Wayney's BlogPlace

2012-01-09T20:43:00.000-05:00

I am taking a course through RBC Ministries and ChristianCourses.com titled "Ministering to People in Pain". It has been very interesting. One of the lessons deals with helping people develop resilience as the fourth intervention in helping people with pain (PWP).

Resilience is the capacity to recover quickly from difficulties;toughness; recovering readily from adversity, depression, illness, etc.; able to endure tribulation without cracking; strong enough to recover from difficulty or disease.

People with rheumatoid arthritis and other chronic illnesses, especially those that cause pain, need to be resilient or they will not be able to survive in spite of their illness. And not just to survive but to thrive as well. Being resilient is not always an easy thing either.

The lesson discussed a study that may be marks of a resilient person. They are: insight, independence, developing relationships, taking initiative, creativity, humor and morality.

I was struck by the ending comments.

"When we look pain right in the face, and we say, “By God’s enabling grace, I can manage you, because I know this isn’t the end of the story, that the day will come when everything will be changed,” God will triumph and this pain will pass away."
"And resilience comes when we take our rightful place in God’s story as revealed in Scripture. We can do it when we remember that our pain is not a prison that keeps us locked in the past, but resilience comes when we choose to deal with our situation knowing that ultimately God will bring all things together for good. And this gives a different way of looking at our pain."

For some reason, these words hit me as so profound. In the last few years, one could say I've had a rough time. But, I have also learned a great deal in this time as well. Lessons in relying on God to see you through pain. I am thankful for these lessons even though they were learned in extreme pain and hardship. At one point during the time I was in the hospital, I was not alert but was in so much pain that anytime the staff touched me to do care activities, I'd cry. They all felt bad about hurting me and some were troubled enough by my pain that they left the room in tears at times. But, I do not remember any of that time. And while missing a chunk of your life is a very odd feeling, I think it was a measure of God's grace that I was not alert to what was happening and do not remember that time. The pain subsided some and as it did, I "came back" so to speak. I was in an odd state for half of Jan. 2009 through the beginning of Apr. 2009. In that time, my health was bad enough the doctors were questioning my survival. I know it was hard for my family. I was told I may never walk again, that I'd likely be in a nursing home the rest of my life, and so many other things that I've forgotten most of them. One that sticks out in my mind is the doctor who, as we were discussing the options for my next step in treatment after my feeding tube had come out.

I had a feeding tube because I could not keep food down much of the time. It was likely due to the fact my esophagus was a mess of raw places. Those raw places extended through my stomach and into the first few inches of my small intestines. I had NO appetite either. I'd had a naso-gastric feeding tube off and on for months. That is a tube that is inserted into the nose, going down the esophagus and into the stomach. They needed an option that was more long-term. So they inserted a jejunostomy feeding tube (J-tube) is a tube surgically inserted through the abdomen and into the jejunum (the second part of the small intestine). The procedure is called a jejunostomy. This is done under general anesthetic. The J-tube is one that if it comes out somehow, it cannot be replaced. Great care was taken to ensure it did not come out.

One day, one of my CNAs was readying me for my bath. She leaned me forward to remove my gown from behind me. I clearly remember watching her make sure that the gown was not on the tube. She arranged the gown so that it was on the opposite side of my body from the tube. I am grateful that the nurse was in there giving me meds as the CNA came to ready my bath and that because the nurse delayed her, the nurse offered to help the CNA with my bath so that it went faster. As the CNA picked up my gown to put it in the dirty linens, the nurse was standing to my left side, where the tube was; with the CNA was on my right. As she removed the gown, we all watched stunned as the tube easily slipped out of the hole and followed the gown across the bed. We all kept looking from the hole to each other in silence. The CNA was upset and worried she had done something wrong. It had not hurt a bit. I didn't even feel a tug really. The nurse was trying to figure out what happened. The only thing she could see was there seemed to be only a few stitches holding the tube in. I was more concerned about the CNA than what had happened. I didn't want to see her in trouble for what happened. I was very glad the nurse was there to help keep the situation calm.

Over the next few weeks, they went back to using the NG-tube while deciding what the next step would be. I will NEVER forget the day one of the doctors was there for rounds. She wanted me to know that the ethics committee would likely be coming to visit me so that they could decide what to do next. Then she told me that I was a terminal patient and they had to decide whether more procedures would prove beneficial or be wasteful. Had I been myself, that doctor would have gotten an earful! But, I was not myself at all. I had NO fight in me anymore really. Later I was thinking that we are ALL terminal in a way. In healthcare, terminal is defined as: "predicted to lead to death, esp. slowly; incurable". Life is a terminal thing. We are all going to end in death (barring the return of Christ before we die), and for most of us, it is a slow process to lead us there, giving us decades in which to live our lives. But, I did not think of that until much latter. I did immediately call for the head nurse on the hall to tell her what happened and see what needed done so that I NEVER had that doctor in my room again. I think that was a turning point for me. I was angry enough that the doctor said that in such a cold way. I was going to show her. I'd make it and lead a wonderful life, even if it was vastly different than the life I had before the illness started in Dec. 2008. I don't recall speaking to anyone from the ethics committee but, two weeks later, they decided to insert a percutaneous endoscopic gastrostomy (PEG) tube which is placed endoscopically. The position of the endoscope can be visualized on the outside of the patient's abdomen because it contains a powerful light source. A needle is inserted through the abdomen, visualized within the stomach by the endoscope, and a suture passed through the needle is grasped by the endoscope and pulled up through the esophagus. The suture is then tied to the end of the PEG tube that will be external, and pulled back down through the esophagus, stomach, and out through the abdominal wall. The insertion takes about 20 minutes. The tube is kept within the stomach either by a balloon on its tip (which can be deflated) or by a retention dome which is wider than the tract of the tube.

Shortly after that tube was inserted, I began to have an appetite again. I slowly got more movement in my hands and arms. I was alert more, sleeping less, remembering things better, in less pain and able to tolerate being touched without crying. I even was put in a wheelchair and wheeled around the hospital at times. As I progressed, the decision was made to move me to a nursing home. That was a concern for my family members as one family member is a paramedic and has seen some of the horror stories of nursing home care. But, there was no other option.

The nursing home I was transferred to was exactly where I needed to be at that point. The staff there, from the administrator, director of nursing and all the higher ups down to all of the non-medical positions like housekeeping, dietary, laundry, maintenance, activities, social services, and business staff were all extremely caring. The nursing staff and therapy staff were wonderful. Most of the CNAs, nurses, therapists and therapy aides were so supportive, caring, friendly and made you feel like family. In the two years I spent there, I got to know many staff members fairly well. I miss them in all honesty, but I do keep in touch with many of them via Facebook. I also still go visit the nursing home now that I am home. I go as part of a ministry group that I got involved in as a resident. During the morning, we visit residents in their rooms, reading a short devotion and having a time of prayer. Then in the afternoon, we have a Bible study for a small group of residents, I grew to care not only for the staff members but also many of the other residents. I still keep in touch with them during our visits and even through occasional phone calls and text messages.

Had I not had rheumatoid arthritis and the other pain causing issues, I would not have had the problems I had that landed me in the hospital. Had that not happened, I wouldn't have needed to go to a nursing home. Had I not went to the nursing home, I would not have met a number of people that I am so thankful I got to know. I also don't know if I'd be walking yet. It was predicted that it'd take 2-3 years of daily, intensive therapy to stand let alone walk, if I ever walked again. The physical therapist I worked with at the nursing home did not work me intensively or daily. But, he came up with a way to get me on my feet before my leg braces were ready. Then he had me walking less than a month after I stood. All in all, I started PT--- working for an hour a day, 3 days a week--- on Jan. 5, 2011. I first stood on Mar 29, 2011. Then on Apr 18, 2011, I took my first steps in 3 years. I had my son behind me, literally, and the rest of my family and friends emotionally behind me. My son was visiting me while on spring break. He especially wanted to see what I did in physical therapy.

Before that PT session, we had been in a church service that morning. As the service ended, the pastor chose "Victory in Jesus" to end the service. I didn't think anything of that until the next day. I led a devotion time on the Alzheimer's unit of the nursing home. The activity leader on the unit chose a song for us to sing. It was then that the second verse of that song hit me. The line is "He makes the lame to walk...". I almost broke down in tears there. I realized God had done just that in effect. I was lame, I couldn't stand, couldn't walk. But through the hard work of my physical therapist and the prayers and support of my family, friends, their extended circles and churches as well as the support I received at the nursing home, God worked a miracle in me and I was able to walk after doctors didn't think I'd walk again.

God worked my pain and health problems for good. He had a plan the whole time. I am now home, walking with crutches most of the time. Able to do many things for myself now. I still need quite a bit of help at times from my husband, son and a good friend of ours that we live with but that's ok. I am home! I am where God wants me. And He got me through the rough times to bring me here. I think I am to use my experiences to help others with their pain. Exactly how, I am unsure. There are so many possibilities. I worked with an RA support group prior to being hospitalized and am back with the group. But I also think there is more in store for me when the time is right. My last three years have been an example of the verse in Romans 8:28, "And we know that all things work together for good to those who love God, to those who are the called according to His purpose."

AndGodSaidNo

2012-01-04T19:14:00.000-05:00

AndGodSaidNo

A good friend of mine shared this with me while I was in the nursing home. It is a beautiful poem.

An Identity Crisis for RA :: Article - The Rheumatologist

2012-01-03T20:39:00.000-05:00

An Identity Crisis for RA :: Article - The Rheumatologist
Excellent article on nomenclature of RA.

Show Us Your Hands!

2011-12-25T12:40:00.000-05:00

Show Us Your Hands!
From the site:
"Autoimmune arthritis hands are a visible sign of the enormous strength of individuals who experience so much pain, that their hands are literally being pulled out of shape.

We are proud of our hands. They have endured a lot, and they will continue to endure even more.

We will never be ashamed of our hands, no matter what they look like!"

A Fibromyalgia Christmas Song

2011-11-27T18:38:00.000-05:00

A Fibromyalgia Christmas Song

2011-11-15T11:31:00.001-05:00

Had a mtg w/the Nurse Consultant from the Community Long Term Care program. She was really nice. Told me about available services. Went over my dx, meds etc.

Guess What?

2011-11-11T22:11:00.000-05:00

A Hunger for God

2011-08-17T19:42:00.000-05:00

A Hunger for God

2011-06-19T20:00:00.001-05:00

Heading back to the Manor after a night at home! Had a great time with the boys & Barb! Can't forget the puppers! Mini & I cooked Father's Day dinner for BC.

2011-06-19T10:36:00.001-05:00

I'm testing the mobile posting!

Hayseed Dixie Walk This Way

2010-05-01T22:31:00.000-05:00

My Hamster

2008-11-24T09:10:00.001-05:00

I personalized the colors on this lil guy. You can get your own at
http://abowman.com/google-modules/hamster/#gadgetSWF

They have other Gadgets on the blog. The Peg game that is on the tables at Cracker Barrel is on there as is a game called Type-It. They are both fun. I've not played any of the others. Had to post this Hamster though. He's kunda fun.

Parent Teacher Conference, Sunshine Math, and a Report Card

2008-11-06T22:26:00.004-05:00

During our recent parent/teacher conference, Bastian's teacher mentioned putting him in Sunshine Math. It's advanced math, stuff they don't cover in class. They get a worksheet to do on Monday. They have a group meeting on Fri where they go over any of the problems they had a hard time with. They ask parents to help the kids think the problems through but not give the answers. So this is the second week he's had a worksheet. His teacher did warn us it could be a bit of a challenge. I thought I'd give you a couple of the most recent problems he brought home to figure out for it. I actually found myself using algebra to explain one of them to my 6 yr old! Never thought I'd have THAT use for algebra, which was NOT one of my best subjects!

Which piece will make this shape if you have several of them?

Circle your choice below.

Which tile has a different number of dots than the other tiles? Ring the one that is different.

Five scarecrows had a candy corn eating contest.

Ben ate the most candy corn.
Jen ate more than Len.
Jen ate less than Ken.
Zen ate less than Len.

Write the scarecrows' names in order to show how much they candy corn they ate.

The last question was this:
Add me to myself. Then add 2 more. You will get 14. Who am I?

Bastian had trouble with this one. I could only think of one way to show him how to answer the question. Using algebra.
So I showed him this:
x + x + 2 = 14
Then told him to subtract the 2 from both sides and see what x + x was equal to. So he did and saw that x+x = 12. So then I asked him what number plus itself was 12. He finally got it. I was so proud of him. But Mr Barton did warn that these would be hard questions!

I also want to let you know about his report card. For some reason, they included a speech progress report. I guess it was due the same day we had the meeting for releasing him from speech and that's all it says basically. He mastered his speech goal and dismissal was recommended. Now the actual report card:
The highest mark is Consistent. Then Developing, Needs Improvement, and Not Yet Expected.

There are NO needs improvement markings. There is one not yet expected one in "describes, construct, classifies, and compares geometric shapes. Now, he can describe the shapes and make them. I am pretty sure he can compare them but maybe I am thinking of comparing them in a different way than they do. I am not sure about classifying them and what they use to judge that. On developing, there are 4 marks. they are: understands measurement concepts (time, money, fractions, and linear measurement); art, music, phys. ed. All of the other items are consistent!

In literacy they are: is able to read new words, sustains interest in reading-related activities, comprehends what is read, uses strategies to gain meaning from text, reads with fluency, uses technology as a learning tool in reading, prints correctly and neatly, uses basic capitalization and punctuation skills, uses conventional spelling, expresses ideas clearly, write original stories. and uses technology as a learning tool in writing.

Under numeracy the consistent categories are: understands number relationships, performs numeric operations, understand patterns and relationships, uses concepts to solve problems, uses technology as a learning tool in numeracy.

In science, health and social studies the consistent marks are: makes observations from experiences, explores and seeks answers, participates in class projects and experiments, understands basic concepts.

In Personal and social development the consistent marks are: demonstrates responsibility, follows school and classroom procedures, works independently, uses time wisely, listens and follows directions, returns homework and signed papers.

In overall progress the marks are a bit different. The choices are exceeds grade level expectations, meets grade level expectations, or does not meet grade level expectations. The only rate literacy and numeracy on this. But under literacy he received an "exceeds grade level expectations" mark and then "meets grade level expectations" in numeracy. Added to the literacy section is that he is at reading level 18. I know from speaking to his teacher at the parent-teacher conference that they have to reach level 16 to be able to get out of 1st grade. He's surpassed that. In fact, his teacher has a goal of him to either be close to or reach the level needed to get out of 2nd grade by the end of this year. 28 is the level to leave 2nd grade. So hopefully that will happen.

And last but not least: his teacher's comment. "Sebastian is a great asset to the class. He listens and follows directions well. Continue to work on reading more fluently." No conference was needed.

Bastian playing baseball

2008-10-10T07:14:00.002-05:00

Photobucket Album

If you click on the picture above it will take you to a Photobucket Album. It's is Bastian's Baseball album. He really is enjoying playing fall T Ball this year. In the spring, he moves up to the next league which is machine pitch. He could have played in that league this time, but since he has never played at all, we decided T Ball might be a better idea. We wanted him to have some experience, and make sure he liked it before moving him up with the bigger kids. He's loving playing right now. In fact, he gave up Cub Scouts because of baseball. BC is working on getting a video of the game they played at Cal Ripken Experience on Wednesday night. It was a fun night.

Fighting for Accessibility

2008-08-09T23:05:00.005-05:00

Twenty years ago, I was 11. It's been stated many times before on here that I was diagnosed with JRA at the age of 7. It has a way of causing a child to grow up much faster than other children at times. Even so, I was not as aware of things then as the girl featured in this article is now. I also was not in a wheelchair at the time either, which might have made a difference. Now, because of my occasional use of a wheelchair, I am more aware of these issues. It's rather odd this article was published today. I did not receive it until this evening as an RSS feed from a local news outlet. SCNow covers the Eastern area of South Carolina. It is a partnership between one of our local television stations and some newspapers. The newspaper is not a Myrtle Beach paper though.
Accessibility for All

Jana E. Longfellow and Emily Childers

Published: August 9, 2008

The ability to walk down a sidewalk and enter stores and restaurants to shop is something that most people take for granted. But what if you use a wheelchair or a walker for mobility? What hindrances would you encounter? Can a wheelchair get in?

Many people with disabilities (and the people that love them) say it’s just too much trouble.

By the time you find a place to park your vehicle and remove the wheelchair/walker, you face the issues that most of the population do not notice, such as: curbs that a chair cannot wheel up; broken and uneven sidewalks; stairs instead of ramps; doorknobs that are too high to reach or hard to use when seated; doorways that are too tight; not enough turning radius at the entrance and interior of a store/business/ restaurant; or the non-existence of an ADA accessible bathroom.

How accessible is Downtown Hartsville? I thought it would be best to actually bring someone along on my walk about Hartsville, and found the perfect person to join me.

My partner in this investigation was Emily Childers, 11-year-old daughter of Duane and Audrey Childers of Hartsville. Emily has had Juvenile Rheumatoid Arthritis (JRA) since the age of two and has had episodes of joint inflammation and pain that sometimes make walking unbearable. She has a unique perspective for wheelchair accessibility since she uses her wheelchair for only part of the time; the experience has made her a strong advocate for others, especially children and teens.

The article goes on to describe how the pair walked through downtown Hartsville, SC. It relayed their experiences in trying to cross streets, get in and out of stores, restaurants and other places of business. Ironically, one building that is a state office and therefore mandated under ADA rules to be accessible was one that wasn't. The article told how many places were not only accessible but the staff and business owners treated them well. The jaded person in me wonders though how many knew that an article was being written on accessibility and were doing that for show and how many others were sincere. I know that in the Myrtle Beach area, the bad experiences I've had far outnumber the good ones. Business owners need to pay more attention to the buying power of handicapped people though.

This group has $175 billion in discretionary spending power, according to the U.S. Department of Labor. That figure is more than twice the spending power of American teenagers and almost 18 times the spending power of the American "tweens" market.
(source: Reaching Out to Customers with Disabilities )

I was considering today how I'd been treated on recent shopping trips while in my wheelchair. I was also thinking of what happened when I called a local restaurant to inform them that we had stopped to eat at their restaurant. Part of the deal when giving me the prescription for my wheelchair was that I not use it for short distances, something I fully agree with. I simply use it for longer shopping trips or when the amount of walking needed to do an activity would stop me from that activity. With my wheelchair, I have no excuse that going somewhere I'd otherwise find fun would "cost" too much in physical pain, fatigue etc. I can get out more often with it. But, I will not rely on it for short distances. And the distance from a parking space into a crowded restaurant definitely qualifies as short.

Unfortunately, this restaurant has their handicapped parking spaces located at the BACK of their building. Granted, there is great ramp access if you're in a wheelchair. But, the length and grade of that ramp would have been way too much for me to walk that particular evening. All spaces closer to the door necessitated walking up 6-8 steps, which were unfortunately also too steep for me. On a better day, it might not have been an issue for me. Anyway, I called to speak to a manager. Unfortunately, I had not realized the time and when I looked, I decided just to ask when a good time to call back would be as I knew it was the begining of lunch rush. The staff member I spoke to was polite and mentioned a time. When I later called back, I asked for the manager and was again treated well. When I spoke to the manager, I first wanted to make sure he was not overly busy. I am mindful of that because I have been in the service industry. I've been in retail. So I do see both sides of the issue. This man was extremely polite. Listened to my concerns and said that likely no one had ever considered people who are handicapped and have walking difficulties but are not in a wheelchair. He assured me he would pass on my concerns to the owner. I actually thanked him for being so nice about it. For not giving me the attitude I've faced in other places in this area.

I've been ignored while in my wheelchair, with store staff speaking over my head to my husband...when I am the one asking questions. I've been told that the store was in compliance with ADA standards when I couldn't fit through aisles. My wheelchair is not 36 in wide and ADA standards state asiles should be at least 36 in. I've had store staff actually laugh at me for struggling through aisles and banging my hands on racks. In that case, the staffer also asked how I was and when my reply was "not good, I keep hitting my hands on the racks" she had the nerve to laugh again and then say she thought I was joking with my husband. Believe I was not in any way sounding like I was making a joke. This person also made us request a bag for our purchase, was offended when I got angry and told her how I felt about her laughter and then told us "God doesn't like you either" or some such piece of crap. She then followed us to the front of the store but told her boss she was trying to make it easier for us to leave, that she was going to open the doors for us. Except I am curious how she was going to do that when my son was in front of me and my husband was behind me and we could barely get through between the racks. Was she going to shove us out of the way to get to the door? The funny thing about this incident: It was in a Christian clothing/bookstore. Yep, real great Christian values there.

Anyway, I had thought today that someone needed to write a story on this. I can write my opinions and feelings from the standpoint of someone actually in a wheelchair. But to the "mainstream" I'm just another bitter handicapped person who thinks everything should be handed to me. The flaw in that is I'm generally not bitter; although with enough treatment like I have had in the past I could easily become so. And I definitely do NOT think I need everything handed to me. No one "owes" me anything just because I am handicapped. I do however expect businesses to comply with the law. Unfortunately, in this area, you are considered less than second class by many if you are handicapped; so the thinking seems to be "why should we do as the law says when handicapped people do not matter?"

Stories like the one below though, give me hope that there are others who are advocates. It also gives me hope that our future is not as bleak as many would like to make it out to be. That not all of our children are slackers. I find it brave that an 11 year old is fighting for her rights and the rights of others. It does make me wonder though; why it takes an 11 year old. Where are the adults who should be fighting for these same rights? I know I am. Are you?

Chronic Disease - Childhood vs Adult

2008-07-20T15:41:00.001-05:00

I've always said if my having JRA helps someone recognize their own symptoms (did that for my best friend unfortunately), or if my story and lack of proper treatment causes someone to realize how important being aggressive in treatment is, then I've fulfilled my purpose. I tell people I am the poster child for how NOT to treat JRA. If that means that someone gets aggressive in treating their RA or if it means a parent can put aside the natural fears of toxic meds, then great. Basically it just means that what I've been through and shared might stop another person from going through it.

I've also always said that if JRA has to happen to a kid, having a parent with RA is a huge help. Been there, done that. Well, Mom wasn't dx'ed with RA at the time but did have polymyositis, which is one of the 100+ types of "arthritis". So, I fit too many categories. Person with JRA/RA, child of parent with a form of arthritis (now multiple forms) and parent to a child who hurts.

Now all of that said, as much as I hate seeing ANY child in pain, especially my own; I fully believe that it is SO much easier to have JRA hit as a child than it is for TA to hit an adult. I know that all the secondary stuff that has hit or become a major problem in adulthood has been so hard to deal with from a mental/emotional standpoint. And that is even with good coping skills I've learned over the years. Kids on the other hand are constantly learning, adapting and changing. Adapting to JRA is just one more thing. And sadly, the younger a child is diagnosed (which is hard on anyone close to the child) it does make it easier to accept. I was 7. Had I been older, it would have been harder. But for me, it's just a normal part of life. Is that fair? Nah, but life is not fair. Do I wish JRA on any child? Nope, but again the younger you are, the easier to adapt. Do a lot of people, especially parents, not like me stating things like this? Probably. But this is just how I feel about the situation...having had both a childhood and adult dx'es. I know which ones have been easier to adjust to.

As a kid, it's natural to learn new coping skills. For adults, it's a bit harder to change how we've done things most of our lives. It becomes second nature to adapt for a kid. Is it easy to deal with peers? Not always. Did the teasing of my peers damage me for life? No. It's a bit easier than accepting how adults can hassle those of us with RA. A kid with a chronic disease isn't normally disbelieved by adults, isn't told "you just need to ____" or many of the things we hear. Kids are just usually pitied by adults. Adults with RA on the other hand, tend to face other adults not believing them. Giving them unfounded "advice", telling us of "cures", saying things like "get more exercise" etc. All of the things that are annoying, hurtful or potentially dangerous to us.

Like I said, this is just how I feel. Many others don't agree. And that is their right. This is a copy of a post I made on 4RATalk in regards to having a childhood chronic disease (in my case JRA) versus getting one as an adult.

Backup? Who needs stinkin backup?

2008-06-26T06:40:00.002-05:00

Umm EVERYONE who values the files one their PC is who! Hi, my name is Wayney and I'm an idiot. I should have learned when BC had his slight problem of a seriously screwed up PC and kinda sorta lost everything. But did I? Nope. Actually, I was in the process of doing some organizing and cleaning so that I was not dealing with old files, duplicates etc etc. yesterday so that I could do a backup and I kinda sorta deleted a bunch of font files. No problem right? Except I lost a very important font file. Something that put the little X on every window to allow you to know which button to press to say close it. I lost text on pretty much ALL buttons. I opened one program and it looked blank because it had no text to read. So lesson one: don't delete any system font files! Lesson two: make a regular back up of your PC files.

My family!

2008-06-24T15:27:00.001-05:00

Create your own family sticker graphic at pYzam.com

The Gorilla In Your House

2008-06-21T09:40:00.002-05:00

This Is My Blog: The Gorilla In Your House

This post is a VERY good analogy for living with chronic illness. I was pointed to it from a post on 4RATalk. And I found it to be good reading. It's so true that living with illness is like having a gorilla here. You can't ignore it completely....I mean really, who could ignore a gorilla sitting in someone's house? You do need to learn to live with it and not constantly fight it. It's not easy all the time. And sometimes even after learning to live with it....something happens and you have to adjust all over again. Like when the gorilla invites his friends over to party. Yeah that's always fun.

You can rest when you're dead Mommy!

2008-04-19T21:11:00.003-05:00

We had a great day here. We started with a play date in the nearby park with a little boy from Bastian's school. Then we went to pick up our Angel Food Ministries food box, went to the store and then came home. I'd marinated a pork roast before we left and then cooked it this evening. I did decide to lay down between getting home and cooking though. Even with better pain meds (ahh the wonderful Fentanyl patch) in me now, I am still fatigued. Nothing much helps that. Especially during the PMS/monthly fibro flare combo I get. Oh yay!

Tonight after eating, somehow something my hubby and son were doing led to a short video of how a baby grows in the womb. Kinda one of those animations or something. Stops prior to birth. Except, Bastian decides to ask how the baby gets out of the tummy. So, I started with a graphic of the female anatomy and he was sorta getting it but sorta not. So, I searched around and found "Life's Greatest Miracle". So after viewing some animations of birth, we asked if he'd like to see a real live birth. He was up for it and we only watched the last segment of the program. But, he did fine watching except he didn't like seeing the crotch. Umm little dude, that's where the kid comes out. We explained that he was born that way too and he asked some questions about his birth and we answered and that was that. I did ask if he was going to be more careful asking questions because of how in depth we answered them from now on but he said no he liked good answers.

Later on he was watching other videos with BC and finally it was that magical moment....bedtime! Ahh the time mothers everywhere love, even if they won't admit it. And no matter how much you love your kid or how close you are...bedtime is still a wonderful time of day. I also decided to go lay down but not go to sleep yet. So we all went upstairs, including the dog and one eyed kitty. Bastian kids around some, we joke back. Then explain it is time for hugs n kisses. So he comes to me and then BC. Gives the hugs n kisses and comes back to me to "cuddle". And begs so adorably to sleep in our bed with us. Um nope! I actually wouldn't care so much but I hurt more when he does sleep with us because there's the two of us, the dog, him and then one or two kitties at times. His remark to try to sway me: "But it's my day off!" My little response was "when is my day off?". I wasn't trying to be mean, just to get him to think. He said Daddy could take care of him for a day to give me a day off...I said but I'm still your mommy. I don't really want or need or day off of motherhood by the way...sometimes a day of being an adult without the husband and child (and pets) all crawling up my butt all day might be a nice thing but hey, no one said Mom's would ever get privacy again! He thought about my comment that I'm always going to be his mommy...even after he'd tried to say I'd get a day off when he's an adult. He kept thinking and suddenly looked at me and grinned and said "You can have a day off when you're dead!"

Stopped us both cold. Was funny. Then he tried to convince me to just cuddle him a little more. Now, I love me some Bastian cuddles. But, I wasn't born yesterday so I know when he's using the cuddle to stall technique. So I mentioned I was all cuddled out for the day. Which led to BC saying that was great, that Bastian ruined it for him because if I was all cuddled out, then he couldn't even get a hug or a kiss from me.

Needless to say, Bastian went to his bed, BC got his hug and kiss and now I am writing all about them. And wondering...will I really get that rest when I am dead or will I still be out there being a mommy?

At least he did not call me a smart ass this time!

A Milestone for Bastian!

2008-04-12T12:19:00.006-05:00

Whoo hoo. We've had a milestone today! Bastian lost his first tooth sitting here watching Toy Story. It's been loose for a few weeks now and he's been playing with it. And today it popped out. He's calling Daddy at work now to tell him. He had me push on it a bit as well. But I wasn't about to push too hard because I did not want to hurt him and have him never trust me again. So I told him to wiggle it around and that it might come out today. And all of a sudden he said it came out. Well now, the tooth fairy needs to come! YAY!!! Will post a pic when Daddy gets home to take it.

Spring Break 2008

2008-03-30T15:52:00.004-05:00

Photobucket Album

Click on the image to see the photo album of our trip to Indiana during Spring Break in March 2008. Trip diary to follow. The image showing is of a video showing my Mom, aka Oleknitter, enjoying the snow on Easter Sunday. To the right of my Mom is my bestest friend Mary and in the background is my son Bastian.

Tips on Dealing with Grief

2008-03-01T15:28:00.001-05:00

The following came from a friend on a Chronic Pain group I'm on. She in turn got it from a grief group that she is on. We are not aware of the author. I think these tips are pretty useful for dealing with any kind of grief. From the grief of losing family or friends to the grief we need to go through on the way to accepting our diseases.

Be patient with yourself. Do not compare yourself to others.

Go through the mourning process at your own pace.

Admit you are hurting and go with the pain.

Apply cold or heat to your body, whichever feels best.

Ask for and accept help.

Talk to others.

Face the loss.

Stop asking "Why?" and ask "What will I do now?"

Recognize that a bad day does not mean that all is lost.

Rest.

Exercise.

Keep to a routine.

Introduce pleasant changes into your life.

Know that you will survive.

Take care of something alive, such as a plant or a pet.

Schedule activities to help yourself get through weekends and holidays.

Find someone who needs your help.

Accept your feelings as part of the normal grief reaction.

Postpone major decisions whenever possible.

Do something you enjoy doing.

Write in a journal.

Be around people.

Schedule time alone.

Do not overdo.

Eat regularly.

Awww how cutez!

2008-02-15T11:50:00.001-05:00

so, u wantz marry her? « Lolcats ‘n’ Funny Pictures - I Can Has Cheezburger?

I seldom post cutesy things. But this, I needed to post for some reason. I'm not the most romantic person in the world. Ok, BC didn't get a card for Valentine's Day from me. He got a book but I ordered it too late and it's not here yet. But, this was so sweet and cute.

Exhausted!

2008-02-03T22:05:00.000-05:00

I'm exhausted. I have had a long day. I have not had proper meds today...my own fault pretty much though. But, I got off track this morning and didn't take my meds that need taken for breakfast until 1 pm, definitely not for breakfast. Then it means I couldn't fit in all of the other doses I needed. Which is ok for the lunch/dinner meds. I can generally combine them in a way to take meds three times a day rather than 4. But not today. Because I've been so off kilter, I've gotten busy sitting here doing stuff and just realized when I went to move (because I was so tired I didn't MAKE myself move like normal) that I missed that combined lunch/dinner dose and I was hurting. Now it's about an hour and a half til I will take my bedtime meds (I'd taken them now if I didn't wanna be awake until BC came home) that I can't do that. No wonder my BP was up the other day. I can miss partial doses of meds without withdrawal. But, it definitely does NOT feel good. Duh. If I felt good without meds, I'd not be on them since I REALLY hate taking them. I do not like living by the knowledge that in order to have less pain, I must take certain meds so many hours apart.
Don't get me wrong; I'm more than thankful I have my meds. They do help. They don't cure the pain. They don't even always let me do more than I would without them. But, I'm easier to be around when I am taking my meds for pain. I am not fighting pain with every mental bit of energy. When I am off meds and using all of my energy to ignore (ha), fight, distract myself etc from pain, I am not fun to be around. I don't even like me. It's just that high levels of pain tend to make me very grumpy. And they raise my BP, which adds more pain sometimes because it can lead to a headache etc. The meds make me more comfortable basically. Is that a better life? Yup. For me, it's good enough to keep taking the meds. Would I like more relief? Who wouldn't? I'd also like a couple of million bucks. Am I likely to get either? Doubtful. The pain relief isn't likely to get increased because of the nature of my diseases. I am realistic enough to know this. I went into pain management not wanting to get rid of my pain. But, wanting to reduce it. And we have. I can manage better some of the time. And others, it's not the pain that is the issue.
Those times, the issue is the overwhelming fatigue. Fatigue that we're fighting in multiple ways. One way, by reducing pain where we can. Another: by regulating my nighttime sleep. I don't wake up like I used to. I am still a light enough sleeper that if my son needs me, even medicated, I hear him. But, I'm not a light enough sleeper that my hubby wakes me every time he moves. A third way we're trying to reduce the fatigue is by controlling the diseases where we can. Fibro is manageable, RA is manageable, all of the others, manageable. Are they controlled? Eh...not so much. Fibro especially. RA isn't as bad as it could be although there will never be a healing of the joint damage I have. Sucks to be me doesn't it? But, you know what? Sucks to be a lot of people...and this was caused more by lack of good knowledge and not by doctors who just didn't do their jobs properly. Even if RA were cured tomorrow, I'd still have to live with the effects of what it has done. Them's the breaks! And aside from all of the other self- care strategies for helping fatigue that I know the last way we're trying to combat fatigue is by keeping me awake during the day.
All of that combined is NOT helping this week. Of course, I've been pushing myself WAY too hard. And because this is a busy week for my son, I will continue pushing until I either crash or it is over. Either way, it will mean I've thrown myself into a flare up of fibro at the very least. The last few weeks, my muscles haven't been hurting. I've had joint achiness and some pain even but not surprising due to the weather. But, fibro wise, it's been the fatigue and mental fog. And the fatigue had started to clear. Until...
Friday I had a doctor's appt. BC and I also ran some errands and did some shopping we don't normally do. Saturday, I tried to recover some but did a few things around the house. Today was a horrible day. I did not go to sleep until after 2:30. I was awakened at 6:30. We left the house (late) by 7:30 and found out...we had a flat tire. Waited at Wal-mart to get it fixed for an hour and a half. But it was never fixed. BC ran an employee home from work, and then we went to Costco to find out if they could just do all 4 tires. No, needed to special order. All through this, I've been unmedicated because like an idiot I left without either taking meds or even grabbing my case. Stupid! Thankfully, I am not to proud to use a wheelchair! Then home to take meds. I decided I was done. The boys went to get the tires finally and then BC dropped Bastian at a friend's house before going to work.
Tomorrow, I have to take BC to work, get an oil change at least, but possibly a tune up, go to the doctor, find and order 2 Batman cakes, get a haircut, find something to wear to school Thursday and to Bastian's party Sat., pick up Bastian, pick up BC and pick up a list of things to turn my son into a Dalmation! This week, I also need to: pick up drinks for 30 kids, pick up plates, cups etc at the party store, pick up the stuff for goodie bags and put them together, go to the pharmacy, go to the medical supply store to get my wheelchair fixed and pick up replacement electrodes for my TENS unit, call about the food for the party Saturday, keep track of RSVPs, pick up my Mom Friday night, and have the birthday party then take Mom home Sat. All of that in addition to my usual stuff I HAVE to do like oh, housework, pay attention to the boys and critters, sleep, help Bastian with homework, have lunch on Bastian's birthday at school, sleep, shower etc.
I almost never do this much spread out over 2 or 3 weeks let alone in a short time.
I am already tired and hurting. So I am not sure when I'll crash. But, it's coming. After awhile, you can recognize the signs when they are building. Can you always stop doing? NOPE. Despite my fondness for saying "You're a human being not a human doing." and "You can't take care of others until you take care of you" those don't get the job done.
So, it will come. And then...I will crash and be in a great deal of pain and fatigue for awhile and then eventually it will lessen. Notice I did not say go away. Pain and fatigue are my constant companions. Sadly, they are the bad friend that you are not sure why you keep around and really for one reason or another can't escape. But, I've also lived with them long enough to know that if they were suddenly gone, it would be a big adjustment for me. I'd not miss them in the sense of wanting them back. Nor do I let them define me (or I try hard not to) but, in a way, since I've grown up with them, I'd have to learn to live all over again without them. I honestly don't remember a day without pain at least. The closest I can come is the day I gave birth to my son. I had a good amount of strong pain medication in me and the worst part of labor and delivery was the leg cramp that wouldn't go away. Then feeling the stitches as the doc stitched me up and when she broke my water. Even those weren't painful so much as uncomfortable. Just as "normals" who get diagnosed with a chronic illness have to completely rethink their sense of normal when they are diagnosed, I'd have to do the same if the pain and fatigue disappeared. And it likely would be pretty hard.
Ok this is way too deep. I gotta get to sleep before I get even deeper.

Guilty pleasures

2008-01-26T12:33:00.000-05:00

Ok, I will say it. I have a guilty pleasure and it is distracting me from my work. I have become very much into reading a blog. It's helping me avoid anything like work. Oh wait, work...that's something I kid myself about. I like to think I do some sort of "work" with posting an occasional news article here and there, but who am I kidding? I don't work. I'm a "lazy bum" in my own eyes but others tell me I'm not.

There's an explanation for that yes. There's there whole "I have NO energy" problem recently. Then there's the stiffness. The pain most days. Although the pain is well controlled, it's not gone. Nor is it realistic to ever think it will be gone. That's just life. Anyway..back to my original reason for this post!

I've been reading this blog for some time now. I Stumbled Upon it. Now it you don't know what Stumble Upon is...click the link and check it out, you'll never have free time again. I should say these blogs rather than this blog as there are currently two. A third, devoted to PhotoShop, seems to be in the works. First up is The Pioneer Woman Cooks. It was the one I originally Stumbled. I love the recipes found there. It's real cooking. Yummy food, full of calories, laden with butter. Check it out if you're not on a diet. Even if you are on a diet, check it out, wishing you weren't on a diet, deciding to splurge just this once and blowing your diet. I am not responsible for weight gained due to PW Cooks! Everything in moderation.

Next is Confessions of a Pioneer Woman. Written by the same woman, it is actually her first blog. I just found the cooking one first. It is about life on the ranch for a late 30s woman who shall we say never dreamed she'd be a rancher's wife. City dwelling, cosmopolitan, food snobby vegetarian maybe.....rancher's wife and mother of four "punks" no. The author, Ree, is about "Keepin it Real". She channels Ethel Merman. She burps and records it for her readers' listening pleasure (or pain). She records her son saying "juice bag" with his slight speech problem that he will one day grow out of. Either that or he will always pronounce "juice bag" the way he currently does as a bit of an inside joke.

Ree is a homeschooling mother. Living as far from a town as their family does, it makes perfect sense. Ree's husband, known affectionately as Marlboro Man, is the stereotypical hunky cowboy. The fact that they have taught their children that there is nothing wrong with hard work is awesome to me. I've long thought kids are being too coddled today. The "punks" as they are affectionately referred to on the blog are not afraid of work. Typical to ranch life, the kids are out doing things most suburbanites wouldn't dream of. 10 and 9 year old girls driving huge farm trucks, 4 and 5 year olds riding horses....the same 9 and 10 year old working cattle just as hard as older boys...all without helmets. Actually, it seems that in reader comments, there was once an uproar over why the kids did NOT wear helmets while horse riding. Ree's answer was simply that it's part of life on a ranch to learn to fall off of a horse and a helmet would teach them not to fall properly. Personally, I think it's sissified to wear a helmet on a horse, unless maybe you're racing or playing polo. (They do wear helmets in polo right?) Then there was the uproar over a lack of seat belts while driving on the ranch. Ummm ok, I'm a city girl but even I know there is pretty much no real need for a seat belt when there's speeds of probably less than 5 MPH and there's no buildings around, no other vehicles, just open ranch. Based on that theory, let's put seat belts of four wheelers and other vehicles that don't have seat belts! But, let's let our kids ride in buses every day without them. Sorry, pet peeve there! We're quickly getting to live in a nanny state where the government decides what's in OUR best interests not us. But, that's another post for another day.

Now, one thing I love about Ree's "keepin it real" attitude is that she pulls no punches when writing about her brother. She's not PC about the fact that, ok to be PC, he has a mental handicap. She grew up before the word retarded was considered insulting. She flat out says "I have a retard". She's just telling the truth. She's not being insulting, she's using the honest to goodness description. It's only an insult if it's used in a hurtful way. And reading her posts, the love she has for her family, including Mike her brother, is awesome. What makes me grin (other than Mike's antics) is the fact that just because he has a problem, Mike wasn't coddled growing up. Ree and her siblings didn't treat him different. Now, that thrills me. Because as a "handicapped person" (person who is "disabled", insert your favorite too PC term here to emphasize person rather than disease) all I want is to be treated as you would anyone else. Personally, my preferred term as long as the tone of voice used isn't rude or condescending is "GIMP"! Do I want to be treated fairly and have the best chance of a level playing field when it comes to access? Yes, what minority doesn't? Women have been fighting for equal rights for a long time as have blacks, Hispanics etc etc. But when it comes to personal interaction, all that PC bull-shit is just that to me. Bull-shit because you're too uncomfortable around someone different to treat them as you would anyone else. So, it is highly refreshing to see someone treat a "retarded" person as they would anyone else.

There's also some awesome photography on COAPW. If you like ranch life, it's there for you. If you like cute pics of kids you don't know...guess what, it's there. And if you like pictures of hot, sweaty, hard workin, good lookin cowboys...well, you're really in luck! Secret confession, I may be VERY happily married, but I can still appreciate a nice specimen of a man. I may be on a diet, but I can still LOOK at the dessert menu. It's the ordering off of it that'll get ya in trouble.

So, that's how I've been avoiding any semblance of work for at least two weeks. I've been basically blog-stalking the archives at COAPW. And I've laughed, I've cried, I've gotten "hiney cringes" and "hiney tingles". I just hope that Ree doesn't think she has some sicko stalker on her hands. I'm harmless really! Just enthralled in how amazing the writing is. So, if you're a reader here...do I actually have any of those...Mom do you still read my blog? BC...you out there? Anyone else who might read my blog that I'm unaware of....please check out COAPW. And if you do and like her and comment...tell her I sent ya! Then I won't seem so lonely stalker type.

Only the child of 2 klutzy people

2008-01-22T08:53:00.000-05:00

Ok so it's a school night and we sent Bastian to bed at a reasonable hour, 8:30. Told him he needed to stay in HIS bed since it was a school night. Made sure he wasn't hungry....well he did. He uses hunger to stall. He took his cold medicine, and his Zyrtec. Thank goodness it does help him sleep. I'd not give Bastian something to make him sleepy just to make him sleepy but I sure love the help that the meds he needs for allergies give him at times. Except tonight, not so much. It's not working!

So, he gets up once because he forgot something downstairs. And he settles back in. I hush the Charley kitty who is sitting outside Bastian's door crying to get let in there. Ummm no, he's a distraction, which is why we started shutting the door in the first place. And it helped him get better sleep for a bit. But anyway, BC IMs me that obviously Bastian is up, which I had just heard for myself. I waited for the inevitable...the "mommy can I please sleep with you just til daddy comes up? please please please???" complete with cute puppy dog eyes and maybe tears. I'm a sucker for those tears and eyes at times. He's not my favorite child, really.

But no little footsteps into my room. He just had to potty. So I'm thinking cool...I got out of being mean. Ummm not so fast. He popped in after going potty. I ignored him for a second and he just snuggled closer. Which I just loathe so much. Actually, that snuggling is one of his tricks as well. And I'm a sucker for it. Then I asked how I could help him except for him sleeping with me til daddy comes up. He just kinda was pouty and said "I hit my head in the bathroom". Now, I'm trying to figure out how an almost 6 year old hits his head in our bathroom without there being water and the tub and a fall involved. So he proceeds to explain. "I bent over to pull my pants up and that white round thing with the hole in it hit me in the head." Ok, so now I'm thinking...the meds are frying his brain. Because I really can't think of what is white in our bathroom that he'd hit his head on. He finally explains it well enough that I got it. I asked "do you mean the toilet seat?" And he's laying his head on my chest this whole time....so he immediately feels me trying to hold in my laughter and he sits up and says "It wasn't funny mommy!" He was indignant about it too. I apologized as best as I could while LMAO! Then I explained...."would you laugh if it happened to mommy?" And of course he said yes and he even laughed a little himself, still telling me it wasn't funny.

Now, you tell me, that was rather funny wasn't it? How in the world do you cause a toilet seat to hit you in the head as you're pulling your pants up? And at least the seat is down now so I don't fall in if I go potty in the middle of the night with no light on! Only my child! He trips and almost breaks his nose on a table, he slips on the bus, he falls going up stairs (and he had no RA to blame), he bonks his head all the time on things...it's a wonder he's made it this far! Last week when he slipped on the bus, he scraped his back. But the funny part is he was wearing his shirt that says "I do all my own stunts". We bought that because he's a klutz! Like parents like son.

Happy New Year!

2008-01-01T11:14:00.000-05:00

I'm hoping everyone I know has a wonderful New Year!

The 12 Days of Christmas, RA Style

2007-12-07T17:16:00.000-05:00

Ok, my absolute favoritest support group has some really talented people on it. This item came from Chrissie. She has a son with JRA. But I loved this so I asked if I could "steal" it for my blog with proper acknowledgment of course...guess it's not stealing then is it? She prefaces it with the following:
"I made this up last year for another site and thought I would share it with you. I have adapted it a bit for the US market."

And now here goes:
The 12 Days of Christmas, RA Style
On the first day of Christmas my true love gave to me a logon for this great site

On the second day of Christmas my true love gave to me 2 specialist nurses and a logon for this great site.

On the third day of Christmas my true love gave to me 3 holistic healers, 2 specialist nurses and a logon for this great site.

On the fourth day of Christmas my true love gave to me 4 pairs of hot socks, 3 holistic healers, 2 specialist nurses and a logon for this great site.

On the fifth day of Christmas my true love gave to me 5 Wheat bags, 4 pairs of hot socks, 3 holistic healers, 2 specialist nurses and a logon for this great site.

On the sixth day of Christmas my true love gave to me 6 Rheumatologists, 5 Wheat bags, 4 pairs of hot socks, 3 holistic healers, 2 specialist nurses and a logon for this great site.

On the seventh day of Christmas my true love gave to me 7 New hips, 6 Rheumatologists, 5 Wheat bags, 4 pairs of hot socks, 3 holistic healers, 2 specialist nurses and a logon for this great site.

(OK you get the drift it continues)

On the eighth day..............8 Fat pens.........

On the ninth day...............9 Mobility scooters.........

On the tenth day..............10 Replacement Knees.......

On the eleventh day.............11 Physiotherapists........

On the twelfth.................12 Repeat Prescriptions.........

Hope you like it HoHoHoHoHoHoHo !!!!!!

Chrissie

RFA

2007-12-04T22:56:00.000-05:00

Well, today was my 4th RFA! I'm not going to detail it here as it's been done to death on my blog before. Just look for the RFA tags. But suffice it to say, I was in a happy, upbeat mood as I went in. Although, I should have been somewhat more mellow because I'd taken Valium pre-procedure like ordered. My BP was good for me. 112/75 and my pulse was only 87 I think. It was higher after of course, but gee, I'd just had 3 nerves fried off so it's normal to be up a bit. Today I didn't use my "other place" thing. My doc, the tech and I chatted. We talked about holiday recipes, I asked what's next after RFAs. Now, it's a bit odd to be laying on a procedure table, with my shirt pulled halfway up and my pants partially down discussing stuffing recipes with 2 men. But, hey I have no issues during medical procedures with males seeing my unclothed body parts. My butt hanging out...sure no problem so long as you're in the medical field.

What's next after the RFAs you ask? Well, right now more RFAs...at least as long as they give me the relief they currently give me of about a year. After that, doc said a spinal fusion. Now, I've heard very little good about the fusions. Too many complications even in otherwise healthy individuals. In someone who has multiple problems that cause the back problems, the fusion has even more complications. And then factoring in my lovely immunosupressant use and the fact that that makes infection a huge worry as well as retards healing..my doc said that's a last resort. He feels an SCS is NOT appropriate because of the same reasons...basically something electrical implanted in me ups the risks even more. So, I'm hoping for years upon years of being responsive to the RFAs. I do not do not do not want a fusion. But, as usual, my inquisitive self will be researching it just in case. I have this need to know as much as possible.

I'm home and recovering nicely. Sore of course. My dear hubby took me to lunch after the procedure cuz I was a good lil girl. Ok, sore to me feels like I've been hit with a baseball bat. But, I know it will go away and be worth it in a few weeks. I stuffed my fat face with food from my fave Chinese buffet. Hey, I've lowered my prednisone and lost weight without trying so it's not hurting to indulge occasionally.

Not much else is happening in my life. Bas is loving school. BC works weird hours. My mom is coming to visit for Christmas. That helps me deal with not being able to go home. My best friend's son almost had me in tears last night because he asked when we were coming back to visit them. I said I didn't know but that I wanted to move back so we were close to them sometime soon. it's just a matter of money and a job for my BC. Mom will likely move with us and live with us at first. Not sure how we'll work out all of the details but we will.

I'm still hosting a daily RA chat. Not that hosting requires much really. The group members do not need a host to chat and I found out today they do gather even when there isn't a host. YAY! Other than that, I do some work on a newsletter as my health allows. I slowly do a few chores a day at home. Mainly laundry and some cooking as well as being the "supervisor" on making sure other chores are done. I help Bas with his homework...yes my kindergartener has homework nightly. Mainly reading but also one other assignment. He likes to do those all at once though since his teacher is kind enough to send a calendar with a month's worth of work each month. The reading is done nightly though and he's making progress. He's also picking up the "Word Wall Words" that they must learn in other places besides his take home books. On TV, on signs, on the computer, etc. So proud of him.

Finally...

2007-10-21T11:49:00.000-05:00

I got off my tushie and did something with the layout of this blog. I don't update that often. I also don't post often but...what's a gimp girl to do? Some days, I have lots to say but no energy to say it. Others, I have the desire to write but nothing to say!

It's been an interesting start to fall here. Bastian's first year of school is going well. He loves it. He's learning pretty fast. His math skills shock me at times because it seems so effortless to him. And his reading is growing. They have nightly homework, even in kindergarten. In addition to that, they have a bring home book to read every night. We've stopped reading them to him pretty much. Usually, we all three curl up on the couch together and he reads it to us. Gar's work is well work. Typical stuff.

I'm having the usual ups and downs of chronic illness. You'd think after 23 years of it, I'd be used to the fatigue. Not a chance. If it weren't for the fatigue, I might be much better off. I still have pain, don't get me wrong. I still have joint damage and it's never going away. But, because pain is such a normal thing for me, it's nothing to complain overly much about. When just folding a couple of baskets of laundry wears me out, you know fatigue is a major problem. I also still have limited ROM but have gotten used to that. Had my periodic check up with the rheumy. I'm now on an every 6 weeks schedule. And we're possibly switching from using the infusion company to getting them done in office. My rheumy has an infusion nurse who is there and stable. Before, it was decided to go with the infusion company to get me started since they're office was having difficulty keeping nurses and the patients they had already established on infusions were having a hard time scheduling them let alone scheduling a new patient.

Pretty routine appts lately. In fact, all we did this time was the usual lab work and changed my Remicade to every 6 weeks instead of every 8 weeks. It helps more than any of the other biologics I've been on. Except, it was definitely wearing off around the 5-6 week mark. So, the doc said let's move the frequency. Getting the lab work was the worst of the visit. I normally have no problems with labs once the tech finds a vein to get. The veins in the crook of both of my elbows though are tricky to get. They like to hide and roll. Part of that is due to scar tissue from having so many blood draws. Having RA leads to needing to visit the "vampires" a lot! Precautionary stuff due to meds as well as some docs use certain measures in lab work to determine if a medication is working. Some patients, that's not a valid tool as they're labs don't accurately reflect things. I'm one of them. According to my blood work, I don't have RA! I haven't checked recently (been very trusting of my doc) to see if my ESR is elevated. I know my WBC is. But, there are two reasons why and infection is NOT one. One is that I am on prednisone. It can elevate the WBC. The other reason is any inflammation in the body can also raise the WBC. So lucky me. The first ER visit I had this year , it seemed to shock the doc when he told me mine was high and I dismissed it saying "I'm on pred and I have inflammation"...apparently he was going to explain to stupid lil me that that could do it. I've not lived with RA for 23 years to NOT know about it in general and more importantly, its effects on my body. I know how I react to things. So, now when someone other than my rheumy orders labs, I just tell them to expect an elevated WBC, and possibly elevated ESR and CRP if they're running those.

I am not sure if I posted this and I'm too lazy to go back and look...but I had a second RFA on my right lumbar spine on Oct 3. It seems to have helped. The area he worked on hurts less but of course, like with the blocks and the other RFAs, everywhere around the area is more sensitive. Especially right above the highest nerve he burnt. It's a dull ache...almost like a kidney infection ache. Annoying to be sure. But, tolerable. I'm going to be scheduling the left side when I see the NP on Nov 1st. Aside from scheduling that, it should be a routine visit as well. Just a monthly check up on how I am doing. Script pick up as well. I like that my pain clinic does not issue pain meds without seeing you monthly.

I'm still fighting disability. I received another denial back in July/August and appealed. That appeal means asking for a hearing. It takes approximately 12-18 months (with 16 months being the average for this district) to even hear a yes or no and then there is a wait for the hearing. So, I do not expect to know anything until after the first of the year if not summer. I'm fortunate that my husband's job has decent insurance and that my doctors are willing to let me pay as slow as I can on things. I've got almost all of my meds as generics. Only three are name brands which helps greatly. As does the fact that Remicade is extremely expensive which causes me to hit my out of pocket maximum for the year pretty early with my 20% co-insurance. Of course co-pays on visits don't count toward that max. And with my pain doc, they're deal with the insurance company and their charges for monthly visits makes it to where each time I pay my co-pay, there's a bit left over. So that helps me with my co-insurance but doesn't go toward that out of pocket. With Remicade, it's over $7000 a treatment. Now, that does hurt a lot! Needless to say, it's no wonder I hit that max the end of August this year.

Let's bash handicapped people!

2007-10-10T13:21:00.000-05:00

I am not sure if anyone has seen this site or an article in the paper. But this site: Handicapped Parking Fraud.org is a group that is taking pictures; leaving sticky notes on people's cars; reporting names, addresses, handicap placard numbers and license plate (or tags as we em in the south) numbers and posting them along with videos if they are caught or pictures. All good in theory right...if people don't have a handicapped placard or plate they shouldn't be using a handicapped spot. The problem is many of the reports are not for people without a tag etc. It's on people who have invisible disabilities who properly display their placard or have a plate. I just think this is a serious invasion of privacy to post names and addresses on a site without the permission of the person.

I also think in all of my reading on the site that despite their "don't harass people and don't confront people, just report them" and "keep in mind there are invisible disabilities" comments they encourage people to harass us.

Apparently they don't like me for being too outspoken, shall we say. I made some comments to some posts and they've been deleted. One sarcasm filled one asking why don't they put everyone who has an invisible disability in a "special" place..then saying oooh that's too much like the Nazis isn't it? Ooopsie Bad Wayney huh? Multiple other posts were deleted as well for one reason or another. And oddly they deleted my avatar which was one their site provided. I could really not care much about that but..it's just strange to do that. They have every right to censor me as it is their site. At least it proves there is a moderator or something around and it's not a free for all. But, what they are doing in posting names etc of "offenders" is actually violating their own TOS. I think that's funny. They censor posts of people who disagree with them but allow those who agree with them to harass and discriminate against others.

So, I'm using my gimpy lil fingers and spreading the word about this site. I'll admit I'm all for prosecuting those who park illegally. And yes there are people who abuse the system and have placards that they really do not need. But, to advocate hassling people who do have placards irritates me. I fully support calling the police if someone does park in a handicapped spot without a placard or plate. But, give those who have a placard or plate the benefit of the doubt. I also freely admit I have a facebook cause on raising awareness about not parking in a handicapped space if you're not handicapped. But, I'm not about to say "hey let's take plate numbers/placard numbers/names/pictures/videos and post them on a website to embarrass people." To me, that's a privacy violation to an extent. The plate/placard numbers not so much because they're out there to be seen. But posting names, addresses sometimes, videos and pictures is NOT cool. People in America are innocent until proven guilty. And last I checked, I wasn't a judge.

I also don't appreciate so called "normals" (by that I mean healthy individuals) fighting my fights for me. I am quite capable of doing that myself. I may be handicapped but I'm not too stupid to know how to stand up for my own rights. I did it a few weeks ago on a trip I took. And hopefully, I got results. At the very least, I got placated by a managerial person. I'll post that in a separate post though!

Support groups

2007-10-01T13:48:00.000-05:00

I've been decreasing my activity level in many support groups and being a "lurker". I recently found a place called MD Junction. Here's part of the description from their home page:

MDJunction is a Health related social network,
a center for Online Support Groups.
This community is about people helping people,
sharing personal experiences and knowledge, just as it
used to be in the old days.

They allow you to rate doctors, have forums and support groups for various diseases.

So, here is a link to MDJunction as well as a link to their Fibromyalgia support group. Also, check out their "Find a Doc" section if you are doctor hunting.

Stupid people!

2007-09-21T13:36:00.000-05:00

For the first time in a LONG time I took a long drive alone. I have not really felt up to driving much around Myrtle Beach, let alone taking a trip alone. I went to pick up my Mom and bring her home for a visit with us. We've been wanting to do this for awhile but I just haven't been able to feel good enough to have company...even if it is my Mom.

So, I set off. Forgot my credit card at home and thankfully remembered while talking to Mom less than 10 miles from home. So, I go get it and start out again. Hubby was home from work that day but stayed home so he could pick up Bastian from the bus. It was kinda nice to feel decent enough to have a day alone to go for a drive. It's about 150 miles one way to my Mom's. I chose to take the interstate route since I could drive faster. To get there, it's about an hour drive on a 4 lane road with a speed limit of 60. Then once you hit the interstate, it's 70 the rest of the way. And no one drives that speed...even the police who passed me as my speedometer said I was doing 85.

Before I get to the interstate, there is a Pilot convenience store I stop at to get a snack and drinks...stretch, use the restroom. Well, I was kinda stiff. So, I decided I'd use my right to park in a handicapped spot if there was an open one. I pulled in and there was a John Deere Gator or golf cart looking thing in the handicapped spot. An older man was standing next to it speaking to an older woman. So I figured it might be his if he lived close by. Drove around the parking lot for about 5 minutes until a spot near the building opened up. Happened to be right next to the occupied handicapped spot. Turns out it was NOT the older gentleman's. He'd walked off and gotten into a car parked at a pump or in another spot. It wasn't the woman's, she got in the car that was in the spot I parked in. It was a store employee.

Being the big mouth I am, I asked him if he was handicapped. He said no. So I asked why he was parked there when it was a violation of the law to park there if he is not handicapped. His lovely answer was "to empty the trash". Another employee came up and I asked if he was the manager and proceeded to launch into my typical "what gives you (or your employee in this case) the right to illegally park in a handicapped spot?" rant. The manager tried saying he was only there for a moment and I called him on that one. He also said if he didn't park there the trash wouldn't get emptied and I'd gripe about overflowing trash cans. Who is he to dare tell me what I'd complain about? I offered to call the police and he said it was private property so it would do no good. He also told me they did it because they were trained that way. And that the employee had a disabled father. Uhh, if that's true he has even more reason to know better than to park in a handicapped spot if he isn't handicapped.

I said I wanted to speak to his boss and he tried telling me he didn't have a boss. Now, unless you're the owner of a company, you have a boss. So I called him on that line of BS. He finally got me a name and number to contact. As I left the building, since the manager made me follow him all through the store to get to his office....the maintenance guy told me to have a nice day. Except he was snotty about it. So, I told him where he could stick his sentiment. Bad of me since you do get more flies with honey than vinegar but by this time, I was hurting, I was tired of walking through the store (forgot my cane in my vehicle in my anger) and I just wanted to get to a phone and make a call.

I called the name on the card and immediately got voice mail. So, I called BC to get contact information online. And then called the name on the card again and he immediately answered. My guess is the manager warned him about me! He agreed it was wrong of the employee to park there no matter the reason. Said he'd take care of the matter that day. Retrain them. He also said that he could blow me some smoke but he wouldn't do that and say he could guarantee they'd never park there again. I know no matter how people are trained, they don't always listen. At least he tried to placate me. And he apologized. But the point wasn't his apology. The employee who parked there was the one in the wrong and should have needed to apologize. I know that's never going to happen as employers don't think it is right to make employees apologize to customers. Something about their self-esteem or something. I know my past bosses had a much different outlook. If I did anything even slightly wrong, I was to apologize.

I'm still going to call the company's hot line, or write to them. I truly do think they need to be made aware of the issue. No store manager should act that way with a customer. Having a hubby in the convenience store business, I know how managers are to treat customers.

After that, the rest of the trip went fine. I picked Mom up, we did our grocery shopping for the week or so and then came home. I actually did ok on the trip. Paid for it the next few days which I knew would happen but, sometimes it's worth it to pay for things and this was one of those times. I did not, however feel like making the trip back up there when it was time to take Mom home so BC did it while I waited for the bus.

MBB anyone?

2007-09-12T22:16:00.000-05:00

Ok, not offering an MBB but offering my experience today if anyone is interested. I'm 11 months post RFA on my right lumbar spine at 3 levels. Not too sure which 3 levels though. Doc didn't seem too talkative today. He asked what we were doing and then said "an epidural right?" I said "no a nerve block" just as the x-ray guys said an MBB. Then the doc was going through my chart and realized this was my third time for an MBB and said "ok so if this works, we're burning those nerves again right?" Uhhh well yeah I kinda always thought that was the plan but...sure. Personally, I trust him enough that if he would have said "let's forget the block and just burn the nerves" I'd have said sure because I actually trust my pain doc rather well despite only seeing him either in passing before or after my appts with the NP, or maybe 4-5 times a year for procedures. My appt was at 3:20 and I was getting in my vehicle to head home at 3:38. That's what I get for being about 20-30 min early for my appt.

It was the standard check on BP, pulse and pulse ox. Get on the table, get swabbed with Betadine, get the local which the doc always warns me about and says it's gonna sting. Then some pressure, some movement of the flouroscopy equipment and the table and then we start all over. Then another BP/pulse/pulse ox check and a quick trip to the recovery room to tell the doc how much my pain had decreased. About 50%. I was hurting in my lower back because I did a stupid thing...forgot to send a note to school with my son saying he'd be picked up rather than riding the bus. And we got in there after they'd put the kids on buses because it was raining and starting to storm. Thankfully, the secretary is SO nice and knew I likely had to be somewhere like the doc without me saying so. She asked if I had an appt. I said yeah and so she radioed the bus to get him brought in. She's the one who helped me find a comfortable seat to register my son for school and called when the transportation office called her to notify her of the change the school made for my son's bus stop. His stop was about a block away. I was having a major problem getting him there and being there to meet the bus of an afternoon because the standing was just too much and I can't use my wheelchair alone around here because of the incline and no cut outs on the side walk close for me. I'm wimpy at wheeling myself still. So I called and asked what we could do. Could I sit at the end of our drive and the driver see me and let him off the bus? Google maps said the distance is 200 feet. I felt fine allowing my 5 yr old to walk that far with me watching. My hubby was fine with it, a good friend of ours who is close to my son (like a second mom) also said that while maybe another kid she'd not say it was ok but our kid...she'd feel ok with it. But, the transportation people said they were not ok with it. So, they added a second stop which they normally do not like to do stops that close together. What's wonderful about it is that they didn't make me feel like I was wrong in asking for help. They didn't give me the prevailing attitude that many handicapped people around here complain about. And what's more, they made the decision in about 10 minutes. I was expecting a few days.

But, I digress. I was hurting from the standing inside the school, rushing as fast as I can gimp along in the rain (bet that was pretty funny for an outsider to watch) and from the rain also. Plus, the right side of my back has been starting to hurt frequently hence scheduling the block. Overall my pain wasn't too bad...but my back was painful. And by the time the doc was done, it was about half of what it was. No burning anymore. And the pain that spreads from my lower back to my buttocks is pretty much gone. So, we scheduled the RFA for 2 weeks from today! Gotta see who will drive me. Either my hubby or my Mom who will just happen to be here when I have the RFA. She'd be happy to go with me. Hubby would have to schedule his day off to take me but he's the boss so not a big deal. But he'd be bored waiting on me. Today he dropped me off and went back to work to hang some signs with his little helper. Our son loves to help Daddy do little things around the store.

I'm completely satisfied with the blocks today. But having done this before on the same nerves...I expected no different. I feel a bit tender where he did the blocks but not nearly as sore as I do with the RFA. Felt kicked with it. I'm being cautious letting my son grab me around the waist and having the critters near me just in case they hit it. I am a bit concerned about one little thing. The doc asked if I was on blood thinners. I'm not unless it's a side effect of one of my other meds I don't recall hearing or reading about. He didn't fully say why he asked but I am assuming I bled a little more than usual this time. That's happened to me before. When I was so sick two weeks ago, some needle sticks didn't seem to want to quit bleeding. In fact, my IV that I removed bled a bit after I smacked it on my shower. But others stopped fine. And then apparently (I wasn't told but read it in my records) my OB had trouble with stopping uterine bleeding after my labor and delivery. Sadly, as effective as the blocks are for my comfort level, they help me only slightly in being able to do more. I still have to be careful how hard I push myself or I pay for it for days. But pain wise, they rock at making me more comfy. Once I no longer feel so tender, I can finally sleep in my own bed again!

If anyone wants more details or anything feel free to ask. I'm more than happy to be as open as possible about this. I was thrown into my first MBB on rather short notice. 2 days in fact. Now, I did a lot of reading in those 2 days but firsthand stuff is much better to hear. My pain doc and rheumy and I all kind of have an agreement. They don't waste time telling me about things beyond a name of the procedure/medication/etc unless I ask. That way we can cover more problems in one visit. They both know that even if they explained something in great detail, no matter how much I trust them (and for once I trust my docs VERY much) I'm going to go look it up and research it myself. But my rheumy and I discussed this one time. He basically said after 23 years of dealing with my issues, I know them cold and know how I need to manage them. He particularly said this in regards to managing my dose of prednisone inside the limits he gave me. So, I don't have to call him each time I raise my dose due to a flare or when I taper slowly because the flare is going away.

2007-06-28T08:40:00.001-05:00

You know you have a chronic illness when...

You understand all the medical terminology discussed on the T.V. show Grey's Anatomy.
When you hear the term "Club Med" you automatically think of the hospital.
You ask your child to open the "child-proof" bottles of medicine because your hands are too sore.
Your medical records have to be transported on a cart.
To entertain people at parties you recite the side effects of medications as if you are the voice over on a commercial.
Your favorite Oprah program is when Dr. Oz is on.
To get rid of boredom on road trips, your whole family can go through the alphabet and name a drug that starts with each letter of the alphabet.
When you're unable to sleep because of pain, you watch "The Jerry Springer Show" and feel like you actually have a life.
Your spelling has improved dramatically, especially on words like "fibromyalgia" and "osteoporosis."
Or you've been "Around the World in Thirty Minutes" with CNN's Headline News 57 times in one sitting.
You have a panic attack in public and say, "Praise God this is only the fourth one today!"
You're invited to the wedding of the gal who works at the hospital lab.
You're child thinks watching you do injections of medication is "cool."
You have a flashback and don't know what happened and can honestly say, "I don't know where I was or what I was doing but I'll make
something up if you'd like."

Copyright, Lisa Copen, Reprint permission granted if the following is included:

10 THINGS NOT TO SAY TO A CHRONICALLY ILL PERSON!

10. You can't be in that much pain
9. Stop being lazy and get a job
8. You just want attention
7. Your illness is caused by stress
6. No pain. . . no gain!
5. It's all in your head
4. If you just got out of the house...
3. You're so lucky to get to stay in bed all day.
2. Just pray harder
1. But you look so good!

Copyright, Lisa Copen, Reprint permission granted if the following is included:

How Anne are you?

2007-05-28T11:11:00.000-05:00

How Anne are You?

Memorial Day

2007-05-28T11:03:00.001-05:00

This is a post I made on 4RATalk about Memorial Day. I've added to it somewhat though. For some reason I just felt the need to post this.
The following history of Memorial Day is from: Memorial Day History
Memorial Day, originally called Decoration Day, is a day of remembrance for those who have died in our nation's service.There are many stories as to its actual beginnings, with over two dozen cities and towns laying claim to being the birthplace of Memorial Day. There is also evidence that organized women's groups in the South were decorating graves before the end of the Civil War: a hymn published in 1867, "Kneel Where Our Loves are Sleeping" by Nella L. Sweet carried the dedication "To The Ladies of the South who are Decorating the Graves of the Confederate Dead" (Source: Duke University's Historic American Sheet Music, 1850-1920). While Waterloo N.Y. was officially declared the birthplace of Memorial Day by President Lyndon Johnson in May 1966, it's difficult to prove conclusively the origins of the day. It is more likely that it had many separate beginnings; each of those towns and every planned or spontaneous gathering of people to honor the war dead in the 1860's tapped into the general human need to honor our dead, each contributed honorably to the growing movement that culminated in Gen Logan giving his official proclamation in 1868. It is not important who was the very first, what is important is that Memorial Day was established. Memorial Day is not about division. It is about reconciliation; it is about coming together to honor those who gave their all. Memorial Day was officially proclaimed on 5 May 1868 by General John Logan, national commander of the Grand Army of the Republic, in his General Order No. 11, and was first observed on 30 May 1868, when flowers were placed on the graves of Union and Confederate soldiers at Arlington National Cemetery. The first state to officially recognize the holiday was New York in 1873. By 1890 it was recognized by all of the northern states. The South refused to acknowledge the day, honoring their dead on separate days until after World War I (when the holiday changed from honoring just those who died fighting in the Civil War to honoring Americans who died fighting in any war). It is now celebrated in almost every State on the last Monday in May (passed by Congress with the National Holiday Act of 1971 (P.L. 90 - 363) to ensure a three day weekend for Federal holidays), though several southern states have an additional separate day for honoring the Confederate war dead: January 19 in Texas, April 26 in Alabama, Florida, Georgia, and Mississippi; May 10 in South Carolina; and June 3 (Jefferson Davis' birthday) in Louisiana and Tennessee.

In 1915, inspired by the poem "In Flanders Fields," Moina Michael replied with her own poem:

We cherish too, the Poppy red
That grows on fields where valor led,
It seems to signal to the skies
That blood of heroes never dies.

She then conceived of an idea to wear red poppies on Memorial day in honor of those who died serving the nation during war. She was the first to wear one, and sold poppies to her friends and co-workers with the money going to benefit servicemen in need. Later a Madam Guerin from France was visiting the United States and learned of this new custom started by Ms.Michael and when she returned to France, made artificial red poppies to raise money for war orphaned children and widowed women. This tradition spread to other countries. In 1921, the Franco-American Children's League sold poppies nationally to benefit war orphans of France and Belgium. The League disbanded a year later and Madam Guerin approached the VFW for help. Shortly before Memorial Day in 1922 the VFW became the first veterans' organization to nationally sell poppies. Two years later their "Buddy" Poppy program was selling artificial poppies made by disabled veterans. In 1948 the US Post Office honored Ms Michael for her role in founding the National Poppy movement by issuing a red 3 cent postage stamp with her likeness on it. Traditional observance of Memorial day has diminished over the years. Many Americans nowadays have forgotten the meaning and traditions of Memorial Day. At many cemeteries, the graves of the fallen are increasingly ignored, neglected. Most people no longer remember the proper flag etiquette for the day. While there are towns and cities that still hold Memorial Day parades, many have not held a parade in decades. Some people think the day is for honoring any and all dead, and not just those fallen in service to our country.

There are a few notable exceptions. Since the late 50's on the Thursday before Memorial Day, the 1,200 soldiers of the 3d U.S. Infantry place small American flags at each of the more than 260,000 gravestones at Arlington National Cemetery. They then patrol 24 hours a day during the weekend to ensure that each flag remains standing. In 1951, the Boy Scouts and Cub Scouts of St. Louis began placing flags on the 150,000 graves at Jefferson Barracks National Cemetery as an annual Good Turn, a practice that continues to this day. More recently, beginning in 1998, on the Saturday before the observed day for Memorial Day, the Boys Scouts and Girl Scouts place a candle at each of approximately 15,300 grave sites of soldiers buried at Fredericksburg and Spotsylvania National Military Park on Marye's Heights (the Luminaria Program). And in 2004, Washington D.C. held its first Memorial Day parade in over 60 years.

To help re-educate and remind Americans of the true meaning of Memorial Day, the "National Moment of Remembrance" resolution was passed on Dec 2000 which asks that at 3 p.m. local time, for all Americans "To voluntarily and informally observe in their own way a Moment of remembrance and respect, pausing from whatever they are doing for a moment of silence or listening to 'Taps."

The Moment of Remembrance is a step in the right direction to returning the meaning back to the day. What is needed is a full return to the original day of observance. Set aside one day out of the year for the nation to get together to remember, reflect and honor those who have given their all in service to their country.

But what may be needed to return the solemn, and even sacred, spirit back to Memorial Day is for a return to its traditional day of observance. Many feel that when Congress made the day into a three-day weekend in with the National Holiday Act of 1971, it made it all the easier for people to be distracted from the spirit and meaning of the day. As the VFW stated in its 2002 Memorial Day address: "Changing the date merely to create three-day weekends has undermined the very meaning of the day. No doubt, this has contributed greatly to the general public's nonchalant observance of Memorial Day."

This got me to thinking, had I ever read "In Flanders Fields"? And I honestly don't think I had. Then it got me to thinking about a piece in an L.M. Montgomery book about "the Piper". In Rainbow Valley Walter Blythe has a picture in his mind. Here is the excerpt:

Their charmed circle would be broken; and, in spite of the jollity of their little festival, there was a hint of sorrow in every gay young heart.
"See–there is a great golden palace over there in the sunset," said Walter, pointing. "Look at the shining tower–and the crimson banners streaming from them. Perhaps a conqueror is riding home from battle–and they are hanging them out to do honour to him."
"Oh, I wish we had the old days back again," exclaimed Jem. "I'd love to be a soldier–a great, triumphant general. I'd give everything to see a big battle."
Well, Jem was to be a soldier and see a greater battle than had ever been fought in the world; but that was as yet far in the future; and the mother, whose first-born son he was, was wont to look on her boys and thank God that the "brave days of old," which Jem longed for, were gone for ever, and that never would it be necessary for the sons of Canada to ride forth to battle "for the ashes of their fathers and the temples of their gods."
The shadow of the Great Conflict had not yet made felt any forerunner of its chill. The lads who were to fight, and perhaps fall, on the fields of France and Flanders, Gallipoli and Palestine, were still roguish schoolboys with a fair life in prospect before them: the girls whose hearts were to be wrung were yet fair little maidens a-star with hopes and dreams.
Slowly the banners of the sunset city gave up their crimson and gold; slowly the conqueror's pageant faded out. Twilight crept over the valley and the little group grew silent. Walter had been reading again that day in his beloved book of myths and he remembered how he had once fancied the Pied Piper coming down the valley on an evening just like this.
He began to speak dreamily, partly because he wanted to thrill his companions a little, partly because something apart from him seemed to be speaking through his lips.
"The Piper is coming nearer," he said, "he is nearer than he was that evening I saw him before. His long, shadowy cloak is blowing around him. He pipes–he pipes–and we must follow–Jem and Carl and Jerry and I–round and round the world. Listen–listen–can't you hear his wild music?"
The girls shivered.
"You know you're only pretending," protested Mary Vance, "and I wish you wouldn't. You make it too real. I hate that old Piper of yours."

But Jem sprang up with a gay laugh. He stood up on a little hillock, tall and splendid, with his open brow and his fearless eyes. There were thousands like him all over the land of the maple.
"Let the Piper come and welcome," he cried, waving his hand. "I 'll follow him gladly round and round the world."

Later in Rilla of Ingleside Walter says a few different things about the Piper.
First he states in chapter IV:

Walter looked at her and had one of his odd visitations of prophecy.
"Before this war is over," he said–or something said through his lips–"every man and woman and child in Canada will feel it–you, Mary, will feel it–feel it to your heart's core. You will weep tears of blood over it. The Piper has come–and he will pipe until every corner of the world has heard his awful and irresistible music. It will be years before the dance of death is over–years, Mary. And in those years millions of hearts will break."

Then later on in Chapter XXIII he writes to her, in a letter she received after word of his death:

"Rilla, you know I've always had premonitions. You remember the Pied Piper–but no, of course you wouldn't–you were too young. One evening long ago when Nan and Di and Jem and the Merediths and I were together in Rainbow Valley I had a queer vision or presentiment–whatever you like to call it. Rilla, I saw the Piper coming down the Valley with a shadowy host behind him. The others thought I was only pretending–but I saw him for just one moment. And Rilla, last night I saw him again. I was doing sentry-go and I saw him marching across No-man's-land from our trenches to the German trenches–the same tall shadowy form, piping weirdly–and behind him followed boys in khaki. Rilla, I tell you I saw him–it was no fancy–no illusion. I heard his music, and then–he was gone. But I had seen him–and I knew what it meant–I knew that I was among those who followed him.
"Rilla, the Piper will pipe me 'west' tomorrow. I feel sure of this. And Rilla, I'm not afraid. When you hear the news, remember that. I've won my own freedom here–freedom from all fear. I shall never be afraid of anything again–not of death–nor of life, if after all, I am to go on living. And life, I think, would be the harder of the two to face–for it could never be beautiful for me again. There would always be such horrible things to remember–things that would make life ugly and painful always for me. I could never forget them. But whether it's life or death, I'm not afraid, Rilla-my-Rilla, and I am not sorry that I came. I'm satisfied. I'll never write the poems I once dreamed of writing–but I've helped to make Canada safe for the poets of the future–for the workers of the future–ay, and the dreamers, too–for if no man dreams, there will be nothing for the workers to fulfil–the future, not of Canada only but of the world–when the 'red rain' of Langemarck and Verdun shall have brought forth a golden harvest–not in a year or two, as some foolishly think, but a generation later, when the seed sown now shall have had time to germinate and grow. Yes, I'm glad I came, Rilla. It isn't only the fate of the little sea-born island I love that is in the balance–nor of Canada nor of England. It's the fate of mankind. That is what we're fighting for. And we shall win–never for a moment doubt that, Rilla. For it isn't only the living who are fighting–the dead are fighting too. Such an army cannot be defeated.
"Is there laughter in your face yet, Rilla? I hope so. The world will need laughter and courage more than ever in the years that will come next. I don't want to preach–this isn't any time for it. But I just want to say something that may help you over the worst when you hear that I've gone 'west.' I've a premonition about you, Rilla, as well as about myself. I think Ken will go back to you–and that there are long years of happiness for you by-and-by. And you will tell your children of the Idea we fought and died for–teach them it must be lived for as well as died for, else the price paid for it will have been given for nought. This will be part of your work, Rilla. And if you–all you girls back in the homeland–do it, then we who don't come back will know that you have not 'broken faith' with us.

I actually found out that L.M. Montgomery wrote a poem titled "The Piper"

THE PIPER

One day the piper came down the Glen...
Sweet and long and low played he!
The children followed from door to door,
No matter how those who loved might implore,
So wiling the song of his melody
As the song of a woodland rill.

Some day the Piper will come again
To pipe the sons of the maple tree!
You and I will follow from door to door,
Many of us will come back no more...
What matter that if Freedom still
Be the crown of each native hill?

Reading about "The Piper" it was noted that it was based on "In Flanders Fields". So here is the text of it.

In Flanders Fields

In Flanders fields the poppies blow
Between the crosses, row on row,
That mark our place; and in the sky
The larks, still bravely singing, fly
Scarce heard amid the guns below.

We are the Dead. Short days ago
We lived, felt dawn, saw sunset glow,
Loved, and were loved, and now we lie
In Flanders fields.

Take up our quarrel with the foe:
To you from failing hands we throw
The torch; be yours to hold it high.
If ye break faith with us who die
We shall not sleep, though poppies grow
In Flanders fields.

—By John McCrae

All of this led me to think of "Taps"
Click the link to hear Taps

Fading light dims the sight
And a star gems the sky, gleaming bright
From afar drawing nigh,
Falls the night.

Day is done, gone the sun
From the lake, from the hills, from the sky
All is well, safely rest;
God is nigh.

Then goodnight, peaceful night;
Till the light of the dawn shineth bright.
God is near, do not fear,
Friend, goodnight.

Update

2007-04-09T14:00:00.000-05:00

It seems it has been awhile since I've posted an update. Wow..October was the last one. Well a lot has happened since then. In Nov. we dropped Arava down to half the dose to see if some of the problems I was having was due to it. Then in Dec. we stopped Arava and replaced it with Imuran. The side effects did not stop and by two weeks after lowering the dose, I started swelling horribly in my feet. To the point that we upped my Neurontin to stop the tingling. We also switched my pain med from 3 times a day to 4 times a day. Which helped. In January, we restarted Arava. And I scheduled the first of the nerve blocks on my left side to prepare for an RFA. Well, I just said I am ready to do the left side and figured that's what was scheduled. Turns out it was scheduled as an RFA. The doctor gave me the choice of doing the RFA without the diagnostic blocks and it maybe not being the right nerves or doing the blocks and returning the next week for the RFA. To me, if he was willing to do the RFA without the block, then he must have confidence it would work somewhat. So I said let's do the RFA. He made sure I'd not be angry at him if it didn't work. I wouldn't be as I know even with the block, there is a chance it won't work. It did. My lumbar area is not nearly as painful as it used to be.

Still having the pain and swelling in my feet. And I'm not a "sweller" generally. Had my first Decadron shot in 3 years in Jan. as well. That helped a ton as did restarting Arava. But, the swelling is still there. I asked for another in Feb when I had company and it wasn't as wonderful as the first. I'll definitely ask for one before my vacation back home because even a little help from it is great!

We now think I have plantar fasciitis in both feet. So doing the conservative care thing for now. Eventually it may lead to injections and worst case, it will lead to surgery. Been having a ton of pain in my right hip since mid-Feb. Think it is RA related...but doc also raised possibility of AVN, which is not what I want it to be. If it turns out that it's not those or something like bursitis, then Stacy (the NP at my PM doc's office) said we should consider a lumbar disc issue causing nerve pain into that hip. Which means ESIs (except with my daily intake of prednisone those may not help), a rhizotomy or surgery. If it is RA in my hip, not much to do. AVN there are all kinds of things to do with the last thing being surgery. So, there's three things now that last resort is surgery. Lovely.

We're trying to get me switched from Humira to Remicade as well. Doesn't look like Humira is doing anything. So, as soon as things get all approved, we'll do that. I found out last week I've been highly undermedicated on my pain medicine. Turns out the medicine I take is a liquid based on a dose of 7.5/500 mgs in 15 ml. Most liquid meds are based on the mgs in a 5 ml dose. So when they converted my dose last year from 5/500 mg pills to liquid, it was figured on the 5ml dose not 15. My NP decided to up my meds last week. And she was figuring the liquid dose based on the available med in her computer and it came out to being not quite 6 times the amount I was currently taking. HUH??? So, I asked at the pharmacy and we found out I'd been taking too little. So they got it all fixed. I actually upped what I'm taking but we haven't upped my dose. I was supposed to be taking the equivalent of (1) 5/500 mg Lortab three times a day. I was taking about 1/5th of that amount. So, we got it to where I am now actually taking what I should have been all along. And it's working! I'm not at all upset with anyone for this mistake because there are three entities involved. My NP who looks at the meds monthly, the pharmacy and myself. I know I should always check these things. And I never did. Any one of us could have caught that. So, no one to blame or be upset with. I told the people who apologized to me that it was nothing and at least we didn't go the other direction and over-medicate me.

On the home front, my hubby got his long awaited promotion. He's now manager of a store on Hwy 544 in Myrtle Beach/Socastee. Bastian is now 5 and going to be starting school in the fall. I'm still waiting on my disability decision. Even with increased meds, I'm not able to do things like I need to do. I can do what I have to do with a lot of help but...doing the extras even is rough.

2007-04-09T13:46:00.000-05:00

Ok, this is cool. Thanks to my friends at 4RATalk I'm now hosting a daily chat at 2 pm EST or EDT, pending season. This is for arthritis and related conditions. Doesn't mean exactly that there will be a topic or anything like that. Just that I am "hosting". You have to be a member there to use the chat. And please don't just register to come spam us!

Service dog's ouster violates civil rights

2006-12-04T17:17:00.000-05:00

Service dog's ouster violates civil rights

I have a friend who is handicapped. She maintains her independence with the aid of a German shepherd service dog named Spirit. This woman is one of the most courageous persons I have ever met.

On Nov. 8, my friend was denied entrance to [a local big-box store]. A manager told her dogs were not allowed in the store. She told him that Spirit was a service dog and explained what a service dog was, so he let her in and followed her. Midway into the store, Spirit shook his head because an insect had flown into his ear. The manager shouted to my friend and loudly told her her dog had fleas and she would have to leave. She tried to explain but the manager insisted that she leave and escorted her from the store.

This is a civil rights violation and a violation of a federal law, which provides that service dogs be granted access to public places.

Doris Nelsen
Myrtle Beach

Service dog's ouster a clear rights violation

2006-12-04T17:13:00.000-05:00

LEGAL FOLLOW-UP URGED

Service dog's ouster a clear rights violation

By Charles McLaughlin

Re Doris Nelsen letter, "Service dog's ouster violates civil rights," Nov. 26:

The letter concerns Public Law 101-336 - the Americans with Disabilities Act.

The laws concerning service animals are therefore under the jurisdiction of the federal government. The ADA specifically prohibits businesses that serve the public from discriminating against persons with disabilities. The federal law is clear and understandable but unfortunately misconstrued or ignored through lack of acceptance by some Myrtle Beach establishments. This is not a frivolous issue, and ignorance of the law does not give license to disobey the law.

ADA as a federal mandate has priority over all state and local laws, as well as any business owner's standard of business, which might bar animals.

All businesses must, under federal law, permit entry to guests and/or customers and their respective service animals, as well as allow service animals to accompany such individuals to all public areas of a property. A property owner/facility manager is permitted to ask whether the animal is a service animal or a pet and whether the guest/customer has a disability. Once that answer is given, further questioning is forbidden under the law. In other words, the property owner/manager may not, under any circumstances, ask questions about the nature of the disability or the service provided by the animal. Likewise, the property owner/manager may not require proof of a disability or request certification that the animal is a service animal. Furthermore, no fees or deposits - even those normally charged for pets - may be charged for service animals.

This federal law applies to all businesses open to the public, including restaurants, hotels, taxis and shuttles, grocery and department stores, hospitals, medical offices, theaters, health clubs, parks, zoos and public transportation (extra fees for additional seating are sometimes allowed). A person with a disability cannot be asked to remove his/her service animal from the premises unless the animal is out of control and the animal's owner does not take effective action to control it (such as a dog that barks repeatedly at a movie) or the animal poses a direct threat to the safety of others. Businesses that sell or prepare food must allow service animals in public areas even if state or local health codes prohibit animals on the premises.

A business, however, is not required to provide care or food for a service animal or provide a special location for it to relieve itself. Allergies and fear of animals are not valid reasons for denying access or refusing service to people with service animals. Violators of the ADA can be prosecuted under the law and are subject to damages and penalties.

The account in The Sun News is most disturbing and indicates a total disregard for federal law. The disabled person so referenced should pursue this matter on behalf of herself, her service dog, Spirit, and all other disabled persons in the area. To allow this incident to go unchallenged is a slap in the face to all law-abiding citizens of our community.

The store manager in question had some kind of nerve to follow the disabled person around the premises and verbally reprimand her, as reported. This is most assuredly a serious form of discriminating harassment and should be legally addressed. To claim loudly that the service animal has fleas simply because the dog shakes his head is tantamount to saying that a child customer who scratches his/her head has lice or anyone who sneezes in the store is a harbinger of germ warfare. This scenario is totally ludicrous.

The woman's explanation to the manager, not required by law, fell on deaf ears and her subsequent efforts went for naught. This is most unfortunate for all concerned. The person who contributed this letter is to be applauded for exposing this atrocity. My advice is for the disabled lady and Spirit to visit the nearest office of the ACLU. And, as a backup, complaints against this manager and establishment should be immediately registered with the Disability Rights Section, Civil Rights Division, U.S. Department of Justice, PO Box 66738, Washington, DC 20035-6738.

The writer lives in Myrtle Beach.

Service dog's ouster violates civil rights

2006-12-04T17:10:00.000-05:00

The following is my response to these letters. This issue angers me more than the frivolous lawsuits against the city in regards to beach access. Balance is needed. And sadly, Myrtle Beach does not seem to care about that balance.

In regards to Doris Nelsen’s letter (Nov. 25) about the store manager forcing a handicapped woman to leave the store…it is not shocking that the woman received this treatment. Stores in the Myrtle Beach area do not care about handicapped people in my experience. I’m occasionally in a wheelchair due to fatigue and pain issues from multiple diseases. Because of this, I cannot walk for long periods of time. Aside from grocery stores such as Food Lion and Bi-Lo, my shopping experiences in Myrtle Beach have been horrible. Stores, for the most part, do not maintain the required clearance for wheelchairs and staff members are rude to those in wheelchairs. I was in a store and speaking to a store employee about blocked aisles and a blocked fire exit. The employee ignored that I was the speaker, not my husband pushing the wheelchair, and directed his comments to my husband. The store’s excuse was that aisles were blocked because it “is the Christmas season” and we’re directed to keep displays out was ludicrous to me. By blocking the way of a person in a wheelchair, the store is making buying much harder for the disabled. The attitude of many, but not all, big box store employees in this area is atrocious. I’ve had numerous stores in both Coastal Grand Mall and Broadway at the Beach that I have been completely unable to enter or move around in. I’ve been poked by racks, scratched by store fixtures and given dirty looks by staff members when my husband has had to move a stack of merchandise to allow me to pass something. He of course returns things he’s had to move to their original spot.

I was grateful to see Mr. McLaughlin’s letter in the Dec 3 newspaper. It contained quite a bit of useful information. As our population ages, the number of disabled people will rise. Unless we stand up for ourselves and ensure businesses follow the law, we are only allowing the discrimination to continue. I would also encourage anyone who has been treated this way to contact the national headquarters of the store to advise them how their stores treat people. Unfortunately, many of the big box stores do not care. But, it is my hope that if enough people speak up and are willing to say they are not going to be treated this way, a change will come.

A few facts on the purchasing power of the disabled from the ADA:

More than 50 million Americans with disabilities - 18% of our population - are potential customers for businesses of all types across the United States.

This group has $175 billion in discretionary spending power, according to the U.S. Department of Labor. That figure is more than twice the spending power of American teenagers and almost 18 times the spending power of the American "tweens" market.

Accessibility attracts not only peope with disabilities but also their families and friends. Like others, these customers often visit stores, restaurants, movie theaters, and other businesses accompanied by family or friends. This expands the potential market exponentially!

This market is growing fast. By the year 2030, 71.5 million Baby Boomers will be over the age of 65 and demanding products, services, and environments that address their age-related physical changes.

Source: http://www.usdoj.gov/crt/ada/reachingout/intro1.htm “Reaching Out to Customers with Disabilities” accessed 12/04/06

I would further encourage all business owners and managers to read a few publications available from the ADA.

Commonly Asked Questions About Service Animals is “[a] 3-page publication explaining the requirements of the ADA regarding animals that accompany and provide services for a person with a disability.” as described by the ADA.

ADA Questions and Answers. is “[a] 31-page booklet giving an overview of the ADA's requirements for ensuring equal opportunity for persons with disabilities in employment, State and local government services, public accommodations, commercial facilities, and transportation, and requiring the establishment of TDD/telephone relay services”.

Reaching Out to Customers with Disabilities, an online course for businesses which covers such topics as: policies and procedures; communicating with customers; removing barriers; and others.

In addition to the above mentioned resources, there are many other publications on the ADA’s website. The U.S. Department of Justice provides free ADA materials. Printed materials may be ordered by calling the ADA Information Line (1-800-514-0301 (Voice) or 1-800-514-0383 (TDD)). Automated service is available 24-hours a day for recorded information and to order publications.

I do hope that Ms Nelsen’s friend does file a complaint as Mr. McLaughlin suggested. Even taking federal law out of the equation, SC law also states in SECTION 43-33-20. Right of use of public facilities and accommodations of blind, other special need persons, and guide dog trainers. [SC ST SEC 43-33-20] that:

(a) The blind, the visually handicapped, and the otherwise physically disabled have the same right as the able-bodied to the full and free use of the streets, highways, sidewalks, walkways, public facilities, and other public places;

(b) The blind, the visually handicapped, and the otherwise physically disabled are entitled to full and equal accommodations, advantages, facilities, and privileges of all common carriers, airplanes, motor vehicles, railroad trains, motor buses, street cars, boats or any other public conveyances or modes of transportation, hotels, lodging places, places of public accommodation, amusement or resort, and other places to which the general public is invited, subject only to the conditions and limitations established by law and applicable alike to all persons;

(c) Every handicapped person has the right to be accompanied by an assistance dog, especially trained for the purpose, in any of the places listed in item (b) of this section without being required to pay an extra charge for the assistance dog. Each handicapped person is liable for any damage done to the premises or facilities by the dog.

State law further lays out the penalties of unlawfully interfering with the rights of a blind or disabled person in SECTION 43-33-40. It is a misdemeanor to do this.

Source: “Code of Laws of South Carolina” http://www.scstatehouse.net/code/t43c033.htm accessed 12/05/06

The South Carolina Protection and Advocacy System for the Handicapped is set up to advocate for people in cases like this. Their phone number is (866) 275-7273. They provide “[p]rotection and advocacy services for individuals with handicaps - physical disabilities, mental illness, mental retardation, etc. Ensures individual rights and appropriate treatment. Attorneys on staff to represent individuals who are victims of abuse, neglect, discrimination.” Their website is: http://www.protectionandadvocacy-sc.org/

I encourage anyone who has been discriminated against to contact the various agencies that help.

Rambling

2006-10-26T12:15:00.001-05:00

I am now a little over a week post RFA and all I can say is it was helpful. Once the rest of my back is taken care of, I might be able to do a little more at home. I expected to have an increase in pain as noted in a lot of what I've read about the procedure. So far, I've felt bruised and tender but that is all. The muscle spasms are still there and of course more noticible when the pain is lessened. I'm not pain free. But it's manageable. I cannot wait to see how long until I can do the left side.

It's been a busy month. Stacy adjusted some meds for me to try to get more pain relief. I had the RFA. I've dropped one support group and the website for it and became owner of another I was on.

I can't honestly say whether my RA meds are helping or not. I'm not having a reduction in flares. At my last rheumy appt. he mentioned my labs were bad compared to their normal. While still comparatively low, my ESR was the highest it has ever been. I didn't look at my other values because I didn't want to know quite frankly. I've switched from Enbrel to Humira because of an injection site reaction that lasted 3 weeks. The injection site reaction to Humira is much less. Less itchy, doesn't last too long...couple days. I'm still stiff and achey and moving isn't easy.

Fibro wise, I'v had a rough time. I feel like I am made of concrete. The increase in muscle relaxers has helped a lot with that. It's now just getting back to being caught up. I still wear out extremely easy, even with Provigil. I am not at the dose I am allowed even but, if I increase it, I just end up pushing too hard and sending the RA into a cycle of flaring. I did go through a period of mental fog that was horrible. Thankfully, that's subsiding a bit.

MY RFA

2006-10-17T19:13:00.000-05:00

Well, I'm home. It was nothing. I got there right before 2 and they got me in. Got my BP and pulse checked which was high, despite Valium. They asked if I was sure I wanted to do it. I said sure. So they got me all prepped and ready. The whole pillows to get me positioned, betadine to clean me...then Dr K marks my skin...numbs me, puts in the catheter, numbs me some more, injects saline and then does a sensory and motor test. The sensory test is real tame..just like a fluttery feeling that I have to tell them when I first feel it. Took a bit on the first 2 to feel it and I never felt it on the 3rd nerve. The motor test is an electrical current and supposedly painful. I found it slightly discomforting but not out and out painful on the first 2 and on the 3rd...barely felt it. Dr K kept asking if I was ok. I was fine. Then after the motor test they turn on the RF and it actually burns the nerve. Dr K kept saying if it hurt they could shut it off and restart it at a lower strength. I never felt a thing. Both Dan (the radiologist) and Dr K said I was tough. Dr K did tell me I have spina bifida occulta. I told him he was the first doc to ever mention it but that I knew cuz of reading x-ray reports. We discussed how I learn a lot by reading reports. Spoke about osteoporosis and how I had it long before ever being on steroids. He asked what caused it and I said I'd read a few studies showing kids with JRA have increased chances of it without steroid use even. One of the times he asked if something was painful, I said that my first tattoo hurt more.

Apparently I am a freak of nature because everyone told me this was painful. It's not something I'd do everyday but it's not like I was clenching me teeth in pain or crying out or anything. I was listening to the radio, half listening to Dr K and Dan talk. Dr K did say I have a high pain threshold. Then Dan said so if you complain of pain, you're not kidding around. I laughed and said nope but I also don't show it much either because after 22 years...you learn to hide it.

So now I am home, waiting on my ice pack to freeze so I can do the ice thing. UGH..I hate ice. And gonna try to battle the Valium I didn't need to take so I can watch some TV with my man!

2006-09-17T11:00:00.000-05:00

I've been staying busy it seems. Of course that includes just getting the basics of life done. Those things tend to take a lot of time in that I need breaks, and lots of them to accomplish things. If something requires sitting, I have to move every so often. Either I shift around a lot or I have to get up and walk. Which walking after awhile is a problem to. It's all in finding balance. I sound like a broken record I think sometimes when I preach balance.

I had my second nerve blocks and they've helped a lot. So just waiting til they wear off some and I'll have the RF done. That area of my back is one place I have no complaints with right now. The rest of my back doesn't feel good and if I push things, I feel the pain move from the original painful spot to the right side where it's not painful right now. I have even adjusted again to the spasms I don't feel when the pain is bad.

I've been in a big flare both RA and fibro wise. Seems I just cannot get it to break. I had some injection site reactions to Enbrel. They lasted 3 weeks each. So we tried adding Zyrtec when I took Enbrel and when that did not help...he took me off of it and wants me on Humira. So I start it Friday. Am feeling being off of it...and I wasn't sure it was working. Either that or my RA is at a bad point. I know my last labs were not good. A record high on SED rate for me. So am wondering what my other lab values were. Need to do better getting copies of records.

I did apply for SSDI. Decided to go with Allsup because they do everything for me. I have a case worker with them and anyone who asks me anything about my claim...gets sent to them. I basically do phone interviews and sign the papers. Knowing my age is an issue, I knew eventually I'd need a lawyer for an appeal. Why pay a lawyer to do the appeal etc after I do the initial legwork and fill out all of the forms...when for the same price, I can have someone do all of the paperwork for me. I've heard good things about Allsup too. So that helped make my decision.

Rambling

2006-08-15T17:01:00.000-05:00

Ahh some free time. I don't allow myself much of it to be honest. Lately, I've been busy trying to keep up with the email groups, although can't say as they are busy. Been working on the newsletter as well which can be time consuming. Although at least it's something I can do at my own pace. I feel productive but it takes me awhile to work on it because of my need to be up and down so much. And thankfully, when those fibro fog days hit, I can leave it alone and come back knowing it's still there. I have also finished (mostly) the website for the fibroknitters group. Need to work on the gallery and a few little things but they are "when it gets done" type things.

Bastian has been working on learning his letters and numbers and writing. Some basic math skills too. So that's been fun. He has such an imagination that it's not funny. He has "friends" who live with us. Lots of them actually..and sometimes their parents are here as well. He decided out of the blue to clean his room today. Without being told. He didn't finish but it looks better!

I've been ignoring some of my hobbies lately. Just not in me to concentrate on genealogy. I love doing it. Love the stories of the past, love seeing how families travelled. Love researching records even. But because I'm at a point where I need to make visits to repositories...well that's just not happening right now. I'm not physically up to it even if I were close to those places.

Right now my health is annoying me. I'm frustrated because for the first time in three years I'm being treated...and treated well. But...it's just keeping me from worsening. I know that nothing is going to make me pain free...that's ok. I'd just like to stop these flares where things worsen. It's just a cycle. And I know it's not going to stop...might lessen with treatment. But it just seems as if the treatments are not doing enough. Maybe it is just the current state of my back coloring everything. I've waited too long for my second series of nerve blocks. My back didn't start getting to the point I was ready until last month. I thought I could tough it out. But, I shouldn't have. It's not like the nerve blocks are painful (to me, others say they are) or complicated. Well there are risks but my doc does everything to minimize the risks. It's not even like it takes that long...less than an hour. No recovery issues for me either. My reason for putting it off.. I wanted to pay some on my current bill before adding to it. Well life has a way of biting you in the butt. Instead of being able to pay on that...we paid for vehicle parts. But such is life. I'm not going to worry about my bill if my doc is willing to let me pay slowly. So when I go for my monthly visit Thurs. we will discuss the appt for the block. I am hoping that like the last time, they are able to get me in quickly. After this wears off our next item in the fight against back pain is the radio frequency neurotomy. If you have a weak stomach...you may not enjoy the description of the procedure. Basically, you lay on a table, have sterile drapping and you are prepped. Using floroscopy, a needle is inserted into the nerve (or nerves) that is causing the pain (discovered through the diagnostic nerve blocks) and the needle is heated to 80-90 degrees C. In effect, it burns the nerve off. Which is how it was originally described to me. "Burn those nerves off" is the description I originally got. Through research, yep that's it. Good thing it didn't scare me. Course little my docs tell me can scare me.

I have found something that does scare me if I allow myself to think about it. Being cautioned not to fall. Normally, falls are nothing to people my age. But, when after discussing issues such as T scores, consequences of the low T score in my hip and back, getting meds to treat osteoporosis and all, my doc says to me..I'm really worried about you falling...don't fall. That kinda scares me. I just picture myself falling up the stairs. Yes, for those who have known me for awhile, you know that is possible. Or I picture the cat tripping me. Or slipping in the shower. I just don't want to fall. And for some reason, I fear it. I guess because not only do I have those bone worries, I know how much I hurt all over muscle wise when I fall. The last fall I had (in July, on the beach) set me up for a horrible fibro flare.

I am also frustrated because despite all the meds...new stuff keeps popping up. At least it might be new stuff. It might be plain ol RA. I have been having trouble with my ankle having pain. In general, it just hurts. When I step on it, it shoots pain up the inside of my ankle and then into my leg. But the bottom of my foot hurts too..mainly the heel but if I stay on it, the rest of it starts hurting. The NP said brace or wrap it, ice if I could tolerate it, heat, elevation. All the standard at home things. Rheumy confirmed those things and said that it might be RA or tarsal tunnel (my guess from research) or plantar fasciitis. Now..the at home things are good for all three of those. If those don't work..next would be a cortisone shot. That doesn't scare me in the least. I get 8 shots a week either from hubby or myself. The only thing is where the needle goes depends on which issue it is. RA would be intra-articular, tarsal tunnel would be near or on the tendon I think, and plantar fasciitis would be in the bottom of my foot. I really don't care where the shot goes. I just want relief.

I finally asked a question at my last visits to both the NP and the rheumy. I asked "do you see me going back to work?" The NP said it's too early to tell. The rheumy looked at me, looked away and then back at me and said he did not see me returning to work. He also said he'd sign what was needed for SSDI. So need to get working on that. It's going to be a long fight I think despite multiple diseases/syndromes. My age is against me. But even though most people would be almost crushed to hear those words, I'm ok with it. I felt that trying to find a job would be unfair to my family as well as make me worse healthwise. And plus, who is going to hire someone who is unpredicatble time wise due to health. I can't always guarantee I can work at a specific time. I'm slower than all get out it seems. I need more than the normal number of breaks to stretch which means I'm not so productive. If I deal with customers, well no matter how good a mood I might be in, if I'm fighting pain, I sound angry. So that's not good for customer service. Then there are the fog days where I don't process things normally in a mental way. Those days, I'm forgetful. I repeat myself constantly and even when I know I've done so, and am trying not to, my mind is stuck almost on what I repeated. Did that once to Gar on the phone..said the same thing at least 4 times back to back. On good days, those things aren't so bad...and I hate that I can't predict the good days to be able to schedule a job. But no one will hire me given those things.

Some days just getting out of bed is all I can manage. I may not accomplish much else that day. Reading maybe, but likely reading something I've read repeatedly so that if I miss something it's not confusing. 10 minutes of anything is about my limit before I have to move. Sit 10 min...get up and walk around a bit. Or I get too stiff.

Some more reading..

2006-06-15T11:14:00.000-05:00

Ok in posting these letters to normals I am just trying to have all of them in one area to make it easier to refer people to them.

Wayney

The Spoon Theory

FibroHugs - The Letter To Normals

FibroHugs - Letter to Fibromites

2006-06-15T11:10:00.000-05:00

Letter to Normals
by Claudia Marek

Here is my letter to Normals. You are all welcome to use it, either as is, or as a basis for writing your own. Obviously not everyone will be interested enough to read through it, but for those who will, I hope it helps.

Fibromyalgia isn't all in my head, and it isn't contagious. It doesn't turn into anything serious and nobody ever died from fibromyalgia thought they might have wished they could on really awful days. I can't control how often I feel good or how often I feel terrible. If you want to read articles or books about fibromyalgia I can show you some that I think are good. If you just want to learn as we go along, that's fine too. This is definitely going to be a process. The first step is for you to believe that there is an illness called fibromyalgia and that I have it. This may sound simple, but when you hear about some of the symptoms I don't want you to think I'm making it up.

Fibromyalgia is a high maintenance condition with lots and lots of different kinds of symptoms. There's no way to just take a pill to make it go away, even for a little while. Sometimes a certain medication can make some of my symptoms more bearable. That's about the best I can hope for. Sometimes I can take a lot of medication and still not feel any better. That's just the way it goes.

There's no cure for fibromyalgia and it won't go away. If I am functioning normally, I am having a good day. This doesn't mean I'm getting better because I suffer from chronic pain and fatigue for which there is no cure. I can have good days, weeks or even months. But a good morning can suddenly turn into a terrible afternoon. I get a feeling like someone has pulled out a plug and all my energy has just run out of my body. I might get more irritable before these flares, and suddenly get more sensitive to noise or just collapse from deadening fatigue. Othertimes there may be no warning, I may just suddenly feel awful. I can't warn you when this is likely to happen because there isn't any way for me to know. Sometimes this is a real spoiler and I'm sorry.

Fibromyalgics have a different kind of pain that is hard to treat. It is not caused by inflammation like an injury. It is not a constant ache in one place like a broken bone. It moves around my body daily and hourly and changes in severity and type. Sometimes it is dull and sometimes it is cramping or prickly. Sometimes it's jabbing and excruciating. If Eskimos have a hundred words for snow, fibromyalgics should have them for pain. Sometimes I just hurt all over.

Besides pain we have muscle stiffness which is worse in the morning. Sometimes when I get up out of a chair I feel like I am ninety years old. I may ask you to pull me up. I'm creaky and I'm klutzy. I trip over things no one can see, and I bump into the person I am walking with and I drop things and spill things because my fingers are stiff and my coordination is off. I just don't seem to connect the way I should. Hand-eye, foot-eye coordination, it's all off. I walk slowly up and down stairs because I'm stiff and I'm afraid I might fall.

Because I feel bad most of the time I am always pushing myself, and sometimes I push myself too hard. When I do this, I pay the price. Sometimes I can summon the strength to do something special but I will usually have to rest for a few days because my body can only make so much energy. I pay a big price for overdoing it, but sometimes I have to. I know it's hard for you to understand why I can do one thing and not another. It's important for you to believe me, and trust me about this. My limitations, like my pain and my other symptoms are invisible, but they are there.

Another symptom I have is problems with memory and concentration which is called fibrofog. Short-term memory is the worst! I am constantly looking for things which I have no idea where I put, I walk into rooms and have no idea why. Casualties are my keys which are always lost, my list of errands, which I write up and leave on the counter when I go out. Even if I put notes around to remind myself of important things, I'm still liable to forget them. Don't worry, this is normal for fibromyalgics. Most of us are frightened that we are getting Alzheimer's.

I mentioned my sensitivities earlier and I need to talk about them again. It's more like an intolerance to everything. To noise, especially certain noises like the television or shrill noises. To smells like fish or some chemicals, or fragrances or perfume. I also have a problem with heat and cold. It sounds like I'm never happy but that isn't it. These things make me physically ill. They stress me out and make my pain worse and I get exhausted. Sometimes I just need to get away from something, I just don't know how to say it. I know that sometimes this means I will have to go outside, or out to the car,or home to sit alone and that's really all right. Sometimes when I feel lousy I just want to be by myself. When I'm like this there's nothing you can do to make me feel better, so it's just better to let me be.

I have problems sleeping. Sometimes I get really restless and wake up and can't get back to sleep. Other times I fall into bed and sleep for fourteen hours. I'm sure that's confusing to be around, and I know there are times when my tossing and turning and getting up and down to go to the bathroom disturbs you. We can talk about solutions to this.

All these symptoms and the chemicals in my brain can me depressed as you'd imagine. I get angry and frustrated and I have mood swings. Sometimes I know I'm being unreasonable but I can't admit it. Sometimes I just want to pull the covers over my head and stay in bed. These emotions are all very strong and powerful. I know this is a very hard thing about being with me. Every time you put up with me when I'm in one of my moods, secretly I'm grateful. I can't always admit it at the time, but I'm admitting it now.

I have other symptoms like irritable bowel and pelvic pain that will take their toll on our intimacies. Some of these symptoms are embarrassing and hard to talk about but I promise to try. I hope that you will have the patience to see me through these things. It's very hard for me too because I love you and I want to be with you, and it makes everything worse when you are upset and tired of dealing with all my problems. I have made a promise to myself and now I am making it to you: I will set aside time for us to be close. During that time we will not talk about my illness. We both need time to get away from its demands. Though I may not always show it I love you a million times more for standing by me. Having to slow down physically and having to get rid of unnecessary stresses will make our relationship stronger.

The Open Letter To Those Without CFS/Fibro

2006-06-15T10:58:00.000-05:00

The Open Letter To Those Without CFS/Fibro ...
(source unknown to Wayney at this time)

Having CFS means many things change, and a lot of them are invisible. Unlike AIDS and Cancer, most people do not understand even a little about CFS and its effects, and of those that think they know, many are actually mis-informed. In the spirit of informing those who wish to understand ...

... These are the things that I would like you to understand about me before you judge me...

Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day flat on my back in bed and I might not seem like great company, but I'm still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.

Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be sicker that ever. Please, don't say, "Oh, you're sounding better!". I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.

Please understand that being able to stand up for five minutes, doesn't necessarily mean that I can stand up for ten minutes, or an hour. It's quite likely that doing that five minutes has exhausted my resources and I'll need to recover - imagine an athlete after a race. They couldn't repeat that feat right away either. With a lot of diseases you're either paralyzed or you can move. With this one it gets more confusing.

Please repeat the above paragraph substituting, "sitting up", "walking", "thinking", "being sociable" and so on ... it applies to everything. That's what a fatigue-based illness does to you.

Please understand that chronic illnesses are variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!". If you want me to do something, ask if I can and I'll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don't take it personally.

Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. CFS may cause secondary depression (wouldn't you get depressed if you were stuck in bed for years on end!?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct - if I could do it, I would.

Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm doing something. CFS does not forgive.

Please understand that I can't spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with a chronic illness.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with CFS then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with CFS, if something worked we would KNOW.

If after reading that, you still want to suggest a cure, then do it, preferably in writing, but don't expect me to rush out and try it. If I haven't had it suggested before, I'll take what you said and discuss it with my doctor. He's open to new suggestions and is a great guy, and he takes what I say seriously.

Please understand that getting better from an illness like this can be very slow. People with CFS have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out.

I depend on you - people who are not sick - for many things.

But most importantly, I need you to understand me.

Now for my comments!

2006-06-11T15:46:00.000-05:00

First off, in my opinion the lawsuit is frivilous. The city does try to make things as accessible as possible for handicapped people. There are far more businesses that are inaccsible to worry about here.

The beach access I live closest to has no steps blocking the beach from the parking lot. The only steps are to the deck with benches. Would I ever attempt to take a non-beach going wheelchair onto the beach at any of our local beaches? Not a chance. It's simply too soft of sand. As for the port-o-potties....even not being in a wheelchair but having mobility problems, I'd not dream of using the handicapped port-o-potties. They're just not convenient to any area I frequent. But, public restrooms are a habitual problem here in MB anyway. There simply aren't enough and permananet public restrooms are a joke here. So the fact that the city has even attempted to provide what is considered accessible (by port-o-potty standards) tells me that they don't have it in for handicapped people.

I also wonder if by chance the information given to handicapped people by locals who are clueless what the city offers doesn't come into play here somewhat. As a former hospitality worker, I had to ask the right questions to be able to help the handicapped guests I had contact with. Most people did not know what the answers to questions such as "where do I find a beach-going wheelchair or handicapped accessible beach access?".

As for the editorial about disability being the problem of the disabled person not the city....I don't fully agree there either. As a nation we have laws to protect the disabled. Without those laws, there likely would be little accessibility in any public place. I don't wish to rely on the kindness of strangers in regards to access to public places. I've had problems in stores in this area that were only resolved by explaining to management that unless changes were made, I'd be filing a formal complaint with the ADA.

It is unfortunate that in one particular store the access was less of an issue than the attitude of the manager and clerk I spoke to. It took going farther up the chain to get changes made. I do not think that a store clerk needs to ignore a handicapped person that is speaking to them from a wheelchair in favor of speaking to the person's companion. I dared shop at Christmas time in a wheelchair and made a complaint about aisles not being wide enough. My husband was pushing my wheelchair and despite him not opening his mouth, the clerk directed his comments to my husband. I spoke to someone in management who assured me the store manager would contact me and that never happened. So, I went up the chain. I was able to share with the district manager some info not only on the accessibility laws but also some training guides for how employees should deal with handicapped people. The last time I was in that store, I did not speak to the staff (as that was a good day where I was walking) but did notice aisles were improved.

Disabled resident: Disability is my problem, not city's

2006-06-11T15:42:00.000-05:00

BEACH ACCESSIBILITY

Disabled resident: Disability is my problem, not city's

By Carole-Anne Hallyburton

Re "City upgrades beach access for wheelchairs," May 20.

I am a 36-year-old adult with cerebral palsy, and I'm the first to admit that even with my UNC Chapel Hill degree I can't navigate a port-a-john. Period. It doesn't matter how many handrails the city installs, my using a port-a-john ain't gonna happen.

The lawsuit [discussed in the May 20 article] leaves a mark on the reputation of disabled individuals that's tackier than a port-a-john at a wine tasting.

Frankly, I'm embarrassed by the plaintiff's allegations.

The Grand Strand has been a part of my summers for 35 years. Like the plaintiffs, I spent a lot of vacations unable to physically go out onto the beach. Unlike the plaintiffs, it never caused me to throw a temper tantrum, call it a lawsuit and try to give the Strand a negative spin in the process.

My family and I opted for more common-sense remedies, like accommodations with breathtaking views of the shore. Examples like this largely compensated for my problem. And that's what my disability is: my problem. It's neither the city's, nor the county's, not even the Advocates for Disabled Americans' problem. And it's certainly not the taxpayers' problem.

These days, I like to perch on the access area in North Myrtle Beach and reflect on how good it feels to be back in Horry County. Like many, I am eternally thankful to both Myrtle Beach and North Myrtle Beach for the ramps built over the past two years. They were wonderful surprises, but not something I felt either city owed me.

Since early childhood, I've seen repeatedly how a "please," a "thank you" and a smile earn myself and my disability 10 times more respect than a threat, a tantrum or a sour expression ever would.

I've also observed that able-bodied individuals are generally happy to accommodate any special needs that arise with me. Normally, they see those needs before I do.

I've eaten in restaurants here of many genres, from the hometown atmosphere of Hoskins to the tropical anonymity of Jimmy Buffett's Margaritaville to the Italian flavor of Carrabba's Grill, which incidentally was targeted by the plaintiffs. Not once have I been unable to wheel inside an establishment, get a comfortable table and enjoy a meal (straw and extra napkins included without my asking).

Other customers at their own will have moved their chairs and even their tables to allow me extra space to pass by.

Restaurants, cinemas, stores and attractions aren't the only locations along the Strand to offer courtesies to disabled individuals. Just the other day a city employee emerged from his manhole to stop traffic on a four-lane street in order to let me cross.

As I watched the sun rise over the ocean on Easter morning this year, I whispered a thank-you for the compassion of the city. It loaned the church a beach wheelchair in order for me to attend the service.

With all the positives I've experienced as a disabled person in Myrtle Beach and North Myrtle Beach, I truly would have to be bored to death and fishing for trouble if I used my energy to engineer a scheme like the present lawsuit. I sincerely hope the judge has the good sense to throw the whole ordeal out of court.

The writer lives in North Myrtle Beach.
Originally published: Myrtle Beach Sun News

Myrtle Beach officials say handicapped access has improved

2006-06-11T15:40:00.000-05:00

Myrtle Beach officials say handicapped access has improved

Published Sunday, May 21, 2006

MYRTLE BEACH, S.C. (AP) - City officials say 45 of 149 beach access points are now usable by people in wheelchairs.

The city is being sued by a disabled activist who frequently sues businesses, cities and counties for failure to provide handicap access to buildings and other areas.

City spokesman Mark Kruea wouldn't talk specifically about the pending lawsuit, but said the city has spent more than $200,000 since last summer to add 14 wheelchair accessible points of entry to the beach.

The city also has increased the number of beach-going wheelchairs that it lets people use for free to 11, Kruea said.

The lawsuit, which is scheduled to go to mediation by the end of the summer, accuses the city of building a walkway with steps to the beach when it was previously a flat access route.

Other complaints include that the city's portable bathrooms lack bars for the disabled and that the city's handicapped parking is flawed because of drains, steep slopes and incorrectly drawn spaces.

Originally published:

Island Packet

Disabled visitors sue Myrtle Beach

2006-06-11T15:33:00.000-05:00

Article published Jan 3, 2006

Disabled visitors sue Myrtle Beach

Associated Press

MYRTLE BEACH -- A lawsuit saying the beaches in Myrtle Beach aren't accessible to the disabled has been filed in federal court.

The lawsuit says the city constructed a walkway to the beach with steps over what was previously a flat route.

It also says Myrtle Beach's portable bathrooms lack bars for the disabled and the city's handicapped parking is flawed because of drains, steep slopes and incorrectly drawn spaces.

Linda Vandeusen, of Columbia, and Edward Law, of Orlando, Fla., are asking for undisclosed monetary damages and an injunction forcing the city to comply with state and federal laws concerning access for the disabled.

Both use wheelchairs and said they visited Myrtle Beach during the last couple of years.

Vandeusen is a member of Advocates for Disabled Americans and recently filed a number of similar suits against Lexington County, Richland County, a Charleston hotel, gas station and International House of Pancakes, a Lexington Applebee's, a Hilton Head Island Comfort Inn and a mall in Greenville.

"I'm trying to have accessibility to things that we people with disabilities should have access to," Vandeusen said.

Myrtle Beach spokesman Mark Kruea said a number of the city's beach accesses are handicapped-accessible.

The city also offers free beach-going wheelchairs and has an employees to make sure the city is compliant with the Americans with Disabilities Act, Kruea said.

Vandeusen's attorney said that is not enough. The city's beach wheelchairs are too heavy for a disabled person to operate without assistance, Anthony Brady said.

Myrtle Beach also needs pathways to the beaches that normal wheelchairs can access, said Brady, who thinks the city should use Hilton Head Island's beach accesses as a model.

A judge has ordered the suit into mediation by Aug. 11 and set a Nov. 1 trial date.

Originally published: http://tinyurl.com/qevym

Can You Die From Chronic Pain?

2006-05-29T13:09:00.000-05:00

This was a question asked on a message board I frequent. The following answer was written by IceDrop, an RN and a person with chronic pain. She has graciously allowed me to use this for a few purposes.

Can you die from Chronic Pain?

By Icedrop

The "pain" itself isn’t going to kill you, but in the big scheme of things what pain can lead to, can kill you. It can cause anxiety which can alter your heart functions. It can cause depression and cause anxiety which leads to imbalances which encourage suicidal ideation. Increased pain can alter your diet, as can the medications. So, I think that pain can cause death in the bigger scheme of things...not all by itself. Severe pain can also cause shock...

Fainting, also called syncope, is a sudden, brief loss of consciousness and posture caused by decreased blood flow to the brain. Many different conditions can cause fainting. These include heart problems such as irregular heart beat, seizures, panic or anxiety attacks, low blood sugar, anemia (a deficiency in healthy oxygen carrying cells), and problems with how the nervous system (the body's system of nerves) regulates blood pressure. Some types of fainting seem to run in families. While fainting may indicate a particular medical condition, sometimes it may occur in an otherwise healthy individual. So, yes severe pain can cause people to faint do to the above.

Living with chronic pain can significantly alter your life. The impact of chronic pain on the patient and their family is significant. Often the patient enters into a vicious pain cycle between the mind and body where the perceptions of the pain contribute to increased stress, leading to increased tension, frustration and fear which can influence an increase in the experience of the pain, which leads to more agony and so on. The goal in part then is to interrupt this cycle and to optimize pain control and enhance psychological well-being.

The pain system is interconnected with other systems in the brain that underlie emotions, cognitions (thought) and behavior. Therefore a person with a pain problem needs to be open to looking at all aspects of his/her life, emotional state and personality in combination with medical treatment of the pain in order to manage it most effectively. Factors such as stress, pain behaviors, emotions, attitudes and physical activity all contribute to the triggering and maintenance of a chronic pain condition. Sleep disturbance, fatigue, muscle tension, arousal, medication abuse, memory and learning are other factors in the pain system.

Pain is not just a function of the mechanics of the body, it is also an experience; that is, a function of the mind. How we perceive pain and the degree of emotional impact varies from person to person. There are additional factors that contribute to pain. Depression and anxiety for example, can significantly intensify the experience of pain and associated suffering.

Individuals with pain undergo many changes in lifestyle, finances, occupational and relationship functioning. As a result the individual is grieving those associated losses that have come as a result of the chronic pain. Due to inactivity, individuals may gain weight, lose muscle conditioning and this can impact self esteem. Increased frustration can erode self-confidence in one’s sense of control over their life. Individuals can feel overwhelmed with the chronicity of their pain and the associated emotional factors which they feel to some degree each day. You, your family and significant others bring a unique blend of feelings, beliefs, expectations, coping styles, support and skills to the overall management of your pain. An obstacle to effective pain treatment can be the lack of credibility that the patient feels at times with health care professionals. Due to the huge psychological impact the pain has on their life, the patient is sometimes treated as if their pain is not real. For most individuals this is not the case; the pain is a very real and a legitimate condition even if it cannot be visibly seen. The challenge of the chronic pain sufferer is to get appropriate treatment for the pain in addition to having the psychological impact acknowledged and validated.

Pain does not exist [solely] at the site of where "it hurts physically". Pain includes the entire body...

Pain sure can feel like its going to kill you and for anyone to make a comment "it’s not going to kill you", is just arrogant and sarcastic. Those words aren’t necessarily in medical care because it does not validate the patient’s complaints of pain. Those are my thoughts on the topic.

What RA is like: a letter for family and friends

2006-05-28T14:58:00.000-05:00

It is possible to walk to the park one day and be unable to do so another day. The reverse is also true. Some days just moving around the house is hard enough.

Some days I need splints, a cane, ACE wraps, or even a wheelchair. Other days I don’t. Just because I don’t always need those helps, doesn’t mean I’m faking it.

My pain can travel from joint to joint from day to day or in fact, hour to hour.

I sometimes need a handicapped spot. I don’t like it. But, I need it. I may look healthy enough that I don’t need it but walking out of the store, I will likely be having problems walking.

The medicines I take may have nasty side effects. I know this. I don’t need reminders of this from someone who doesn’t live in my body and feel my pain. I don’t enjoy taking the medications but I have a disease that needs to be medicated.

Don’t lecture me about the addictive nature of pain medications. I know the risks. And don’t judge me for using pain medications. It doesn’t mean I am weak. It means I have pain. If it is a choice between pain medicines allowing me to live a more normal life and not taking them out of fear, I choose having a more normal life.

Standing, sitting, walking, and laying can all be painful. Life is unfortunately painful. I have pain, swelling, limited energy, joints that don’t move right and other symptoms. Sometimes, I’m grumpy because of this. I try not to be but sometimes it comes out despite my attempts to be happy and nice. In addition to the pain and other symptoms, I may be feverish, feel tired, or even have joints that don’t look “normal”. This is all due to RA.

Please don’t suggest “cures”. RA has no cure (at least now). So, I have it, it is incurable. Live with it…I do. I trust my doctor and the treatment plan we’ve worked out between us, so please don’t try to convince me you know a person who “cured” themselves with diet, supplements etc. It may have helped them or it may not have. It could just be the cyclical nature of RA that fools them into thinking they’ve been “cured”.

If you’ve ever broken a bone, think of that pain and magnify it. Then imagine all over your body. That’s how I feel at times.

When I travel with you, please understand that for my health, I may need to have frequent stretch breaks. I’m not doing it to slow our trip down. I don’t take joy in having a hard time getting moving after sitting for awhile. Don’t hassle me over it.

Don’t assume when you hear the word “arthritis” that I mean osteoarthritis, which is what most people think of when hearing arthritis. Most people associate the word with the wear and tear arthritis of aging. I may have OA as well which is that very type. But, I have rheumatoid arthritis, which is an auto-immune disease that causes my body to attack itself. I’m not too young for either. Infants get RA as well as adults. Unfortunately, OA is not just a disease on its own; it can come as a secondary disease to RA. So, I’m not too young for arthritis, please don’t tell me I am. And if you still think I am, well, my body and doctors say different so I’m going to listen to them, not you.

I may need to rest more often than most people. It’s not that I’m lazy. It’s that RA causes fatigue. And that fatigue can come and go or be persistent. Imagine having the flu all of the time.

I may not have “just” RA. There are many other diseases that can go along with it. Those diseases also take their toll on me with symptoms, medications and problems.

I don’t enjoy turning down certain activities due to my RA. I may not always turn that down; it is just that particular time may be a bad time for me. Don’t assume I’ll always turn things down and stop asking me. That makes me feel so left out. But also if I do say no, don’t try to make me feel guilty. And if I say yes, but have to change my mind later, please don’t be angry. I don’t like doing that but sometimes despite my best planning; I just can’t make my body cooperate.

There are things I can do that I also enjoy doing that may look like a struggle to you. Please don’t try to “protect” me by taking things from me or stopping me from doing something. If I’m doing something and not asking for help, it is because I am ok doing that. I’ll likely ask for help if I need it. But also know that I may be too proud or stubborn to ask for help too. If you wish to help, don’t just take over. Ask if you can help. If I say yes, ask what the best way to help me will be. If I say no please don’t be offended, it is likely something that I may struggle with but gives me pleasure to do. (This doesn’t apply to spouses and friends who have known you for long enough to have worked out non-verbal clues of needing help.)

Just because I look healthy, doesn’t mean I am. RA is in many ways an invisible illness. Normally, it takes many years for the effects of RA to be seen visually. Even those who have had RA for many years may look healthy.

Please do not think it is funny to force me to shake hands and then use a crushing grip. It’s not funny and it’s quite painful to be honest. Also please don’t assume because I don’t shake hands that I’m a snob or anything other assumption. It’s just quite painful, even if my hands look normal.

Please keep in mind that as frustrating as it is for you to deal with my RA, it is more so for me. RA typically means some losses for me, whether it is activities I enjoy, my job, my ability to do some of the things I found simple before. To me it may seem like I’ve lost my identity. Typically, people with chronic diseases, especially the newly diagnosed, go through the five stages of grief. Even those who have had RA a long time may go through the stages many times after their initial acceptance of RA.

Do not assume I’m “just depressed”. Depression does go hand in hand with chronic diseases whether due to the unrelenting pain or stress or any other number of reasons. I don’t need to “get out more” and expect it to make me always feel better. Sometimes that itself can lead to depression if I am facing that I can’t do as much when I go out.

Also please don’t try to convince me that changing my diet will “cure” me. Recall that I said RA is incurable. Changing my diet may help with symptoms but it doesn’t help everyone.

Also, I don’t need to be told I need more exercise. I’d like to be able to exercise more but may not be able to. That is frustrating enough. I don’t need to hear from others that I’m not doing enough.

Please do not tell me that my choice of treatment is invalid because it is not conventional.

Author's note: This would not have been possible without those of you who suggested ideas. For that, I thank you. If you wish to share this work with others please provide source link and © information.

Grief and Chronic Disease

2006-05-28T14:49:00.000-05:00

I've read that with any diagnosis of chronic disease it is quite common to go through the 5 stages of grief.

1. Denial and isolation: "This is not happening to me."
2. Anger: "How dare God do this to me."
3. Bargaining: "Just let me live to see my son graduate."
4. Depression: "I can't bear to face going through this, putting my family through this."
5. Acceptance: "I'm ready, I don't want to struggle anymore."

A close friend of mine who recently passed away started a discussion on this topic one day. Here are her words:
"None of us are accepting of these darn diseases all the time. The fact that we still want to deny at times, get angry at our limitations, feel waves of depression for a day or two or make a bargain with God -- these are all signs that we are human and want to enjoy our lives. Once we can accept our condition, the other stages are fewer and further between, and when we are in them, we are better able to work through them.

It does get better. Our lives can still be rich and rewarding, and we will laugh and enjoy the good days.

When you have a few minutes, you might want to try this. Write a list of the losses you have suffered from RA (or whatever chronic illness(es) you have) and a list of what you have gained. The losses will be longest right now. Put the list away, and a month from now, do the same thing without looking at your previous list. You will probably see the positives grow -- slowly, but they will grow."

Note: This post came about through a discussion on RA-Factor.

update on changes in treatment

2006-05-28T14:36:00.000-05:00

I am moving forward in treatment. I did end up not having the second set of nerve blocks because oddly, the first set has helped for a longer than normal time. Now, I felt odd because of that. In researching the procedure, I knew it was used primarily as a diagnostic tool. It's only supposed to last 3 hrs to slightly longer. So, having this long of relief is just strange to me. It's only now starting to ache a bit in my back when I overdo it. So, that's a good thing. I have also "graduated" to not needing to see the pain management doctor each month but am able to see his nurse practicioner. Seems that I am considered fairly stable right now. We made slight med adjustments, but mainly of the "increase dose slightly on bad days, cut back on good days" type changes.

My rheumatologist has also pushed things forward. He felt a medication for osteoporosis was a good thing. A T score of -3 in the right femoral neck may have had something to do with that. And he did also feel that the changes showing an increase in BMD in my spine are likely a false positive change. So, we added Forteo, which is a daily shot to treat osteoporosis. We also increased my MTX, added Nexium to counteract the heartburn from MTX. I got a cortisone shot in my left shoulder this time and also a script for a prednisone burst and taper. We next discuss biologics. I am guessing he's leaning toward Enbrel but am not sure. So far the Nexium has finally kicked in. Or the effects of last week's MTX have worn off...not sure which.

Relief

2006-05-02T09:39:00.000-05:00

Relief:The easing of a burden or distress, such as pain, anxiety, or oppression. OR Something that alleviates pain or distress.

Relief is a wonderful thing. Pain is distressful. Distress leads to more pain. Vicious cycle. But when you finally find someone willing to listen, belive and treat your pain, they become an important member of your healthcare team.

I've struggled for some time finding docs who not only listen to me but actually believe my pain. A doc may listen, but not feel I'm in pain because lab tests don't show a reason for that pain. Another doc may fully believe me but not believe in doing what is needed to treat my pain because of fear of addiction, which is another story in and of itself. I've been shown to have no addictive tendancies. I had no problems going of of medications when I lost health insurance. I went cold turkey without withdrawal from the ones that were safe to do so and I weaned off of the ones that needed to be removed slowly.

In March, I saw a doctor so uncaring that she refused to treat my RA because of medicine toxicity. Yet her notes say it is because there is no current indication of disease activity. I'd told her there wouldn't be any from my lab work as my labs are always good. It's part of having sero-negative JRA! That whole sero-negative thing is something some doctors tend to ignore! The only thing this doctor would do is give me an anti-depressant for treatment of fibro. And a script for water aerobics. Now, how is someone who is in enough pain that they do not do not go to the grocery store without someone else to be able to do a water aerobics class three days a week? I also told this doctor that anti-depressants have done nothing for me in the past except make me nervous, jittery and caused me to clench my jaw in my sleep. She insisted this was the way to go. I asked for muscle relaxers. Her only offering was one that never helped me. But when I mentioned a specific one that I know worked she said no. Then put in my records that I reported no help from any muscle relaxants.

Needless to say, she is no longer a doctor I visit. I found a pain management specialist to treat what was the biggest problem for me. Pain. He started out by first listening to me, then asking what had helped in the past. He then examined me and we discussed his thoughts on treatment. He wanted an MRI as soon as possible and asked me to see a different rheumatologist. He then gave me the medications that have helped me in the past. He called me not more than three days after the MRI to give me the results. I've never had a doctor personally call me with results. He also asked how I was doing, if the meds were helping etc. When I said that they were but that one is not covered by my insurance, we discussed alternatives. He offered to do more for my back but I was leaving for a trip so I declined at the time. I was asked to call him when I ran out of one of the medications so he could give me the replacement medication. I did as he asked and the nurse didn't think he'd call it in since it's a medication used to treat pain, although it isn't a pain medication specifically. He returned my call and again asked how things were going. Asked about the new rheumatologist.

At my second visit we looked at the MRI results which is something no doctor has done with me since childhood. During my childhood, I got to see the films as the doctors discussed them with my mother and me. But ever since, I've not seen the films and only received reports of tests but never a discussion of them. Part of that is my own fault for not speaking up. We then discussed that while the discs etc all look good, I do have a problem with lumbar facet joint arthritis that seems to be the cause of the pain in my lower back. We decided to try nerve blocks and if those were successful, we would then do a radio frequency neurotomy.

I had the first set of nerve blocks last week, and today I have the second set. So far the first set has provided quite a bit of relief. Things are not perfect by any means but I've been able to do more bending and things like that. I do find that this is one doctor I trust. Well enough to "jab needles in my back" after 2 visits. I described the procedure that way for effect to my close friends and family. He seems aggressive at treating my pain to an extent but not more aggressive than I am comfortable with. We discuss things together. He fully explains things to me as well. Although I could do without hearing "Hand me a 6 inch needle" as he's doing nerve blocks.

I also visited the new rheumatologist last week. He seems wonderful as well. He also listened. Then we discussed why the last rheumatologist didn't give me meds for RA. I explained to him that for me, I know all to well the consequences of not properly and agressively treating RA. I have less worries about medication side effects than I do untreated RA. We discussed results of the last set of x-rays, doing more x-rays, the treatment plan in place by the pain doc. And even where he wants to start with treatment. So, as soon as my labwork is in to make sure I have no liver issues, I start 10 mgs of Methotrexate weekly by injection. Then we will raise it and add more if need be. He also decided to give me a cortisone injection in my right shoulder and ordered 8 new x-rays as well as a Dexa scan for osteoporosis.

I'm hoping today goes as well as last week and then we can go from there. But feeling relief is a wonderful thing.

The easy way out?

2006-03-04T08:04:00.000-05:00

Since I've lived most of my life with JRA, I've had to take help that I'd rather not need just to have a successful life. And to be honest, my life in the eyes of some likely doesn't seem all that successful. I mean look at me, I didn't go to college, don't work, have no plans to work in the future (unless some medical miracle or treatment appears to me). But, despite that lack, I have rich life. I'm active in support groups, help out with a newsletter, and am hoping to start advocating for people with chronic pain. I have hobbies such as genealogy and reading. I have understanding friends in my life who value me for me not for what I can or cannot do. And most of all, I have two wonderful males in my life that are more important to me than anything else. My husband and son are two of the most special people in the world.

When it comes to asking for and getting the help I need, I had to learn growing up that someone with a chronic disease cannot always go it alone. Yes, doing all you can for yourself is important. The world is rough. But there also needs to be a balance of accepting help and not taking advantage of that help. What gets me are adults with RA who have this attitude that kids with RA shouldn't accept certain helps like IEP and 504 plans in school. These are people that have no clue what it is like to grow up struggling in school. These are people who were diagnosed as adults and therefore had more mature coping skills than a teen would. Why in the world would one of them tell a teen not to accept help when it is needed? Teens have it rough already without throwing in chronic illness. Adding that makes it much worse. I doubt I'd have done well in school without some things I was given such as a second set of text books, extra time between classes, an elevator key and extra time on tests if I needed it. I used the extra time between classes and the extra books a lot. Because high school is what it is, I didn't use the elevator key all that much because well frankly the other kids hassled me over it. It shouldn't be up to a teen to advocate for themselves what they need. But, they are capable of knowing what they need. And if need be, quite capable of getting it.

But who is to say that doing that is taking the easy way out? Would an adult with RA tell another adult that using a handicapped sticker is the easy way out? Would they say a cane or other walking device is the easy way out? A wheelchair? No, those devices tend to inspire a degree of pity in people with the ability to be fully mobile. How about pain meds? Those the easy way out? I for one don't think any of that is the easy way out. They are just tools used to cope with chronic disease.

The goal of proper and aggressive care with early RA would be to avoid the need for using those items but no one should shame a patient that does need them. I personally could care less what people think of me. If I need help, I accept it. But I don't stand for adults telling a teen to try not to rely on help, basically because the world is a harsh place and no one should feel entitled to help becausre they have a chronic illness. That just doesn't cut it with me.

What colossal death robot are you?

2006-01-09T20:56:00.000-05:00

Which Colossal Death Robot Are You?
Brought to you by Rum and Monkey

Which horrible affliction are you?

2006-01-09T13:34:00.000-05:00

Which Horrible Affliction are you?
A Rum and Monkey disease.

Which historical lunatic are you?

2006-01-09T13:05:00.000-05:00

Which Historical Lunatic Are You?
From the fecund loins of Rum and Monkey.

Born in England sometime in the second decade of the nineteenth century, you carved a notable business career, in South Africa and later San Francisco, until an entry into the rice market wiped out your fortune in 1854. After this, you became quite different. The first sign of this came on September 17, 1859, when you expressed your dissatisfaction with the political situation in America by declaring yourself Norton I, Emperor of the USA. You remained as such, unchallenged, for twenty-one years.

Within a month you had decreed the dissolution of Congress. When this was largely ignored, you summoned all interested parties to discuss the matter in a music hall, and then summoned the army to quell the rebellious leaders in Washington. This did not work. Magnanimously, you decreed (eventually) that Congress could remain for the time being. However, you disbanded both major political parties in 1869, as well as instituting a fine of $25 for using the abominable nickname "Frisco" for your home city.

Your days consisted of parading around your domain - the San Francisco streets - in a uniform of royal blue with gold epaulettes. This was set off by a beaver hat and umbrella. You dispensed philosophy and inspected the state of sidewalks and the police with equal aplomb. You were a great ally of the maligned Chinese of the city, and once dispersed a riot by standing between the Chinese and their would-be assailants and reciting the Lord's Prayer quietly, head bowed.

Once arrested, you were swiftly pardoned by the Police Chief with all apologies, after which all policemen were ordered to salute you on the street. Your renown grew. Proprietors of respectable establishments fixed brass plaques to their walls proclaiming your patronage; musical and theatrical performances invariably reserved seats for you and your two dogs. (As an aside, you were a good friend of Mark Twain, who wrote an epitaph for one of your faithful hounds, Bummer.) The Census of 1870 listed your occupation as "Emperor".

The Board of Supervisors of San Francisco, upon noticing the slightly delapidated state of your attire, replaced it at their own expense. You responded graciously by granting a patent of nobility to each member. Your death, collapsing on the street on January 8, 1880, made front page news under the headline "Le Roi est Mort". Aside from what you had on your person, your possessions amounted to a single sovereign, a collection of walking sticks, an old sabre, your correspondence with Queen Victoria and 1,098,235 shares of stock in a worthless gold mine. Your funeral cortege was of 30,000 people and over two miles long.

The burial was marked by a total eclipse of the sun.

Resolutions for the Chronically Ill

2006-01-02T12:10:00.000-05:00

Rosalind Jaffe's New Years Resolutions:

In the year 2006

1. I will not limit what I do because of fear of pain or more illness. I will take more risks and stretch my body ‘s limits and my soul because that will help me feel good.

2. I will not, however, ignore my aching self during the day and just keep pushing. I will remind myself that it’s not just important, it is critical to take more breaks at the computer, walk early, mid and late in the day, and do my physical therapy exercises as prescribed.

3. I will not use fatigue and pain as an excuse to be crabby with others. I will recognize that I’m really only angry at me for letting myself get to the point where I feel so badly.

4. I will not wait until I’m desperate to ask for help just because my illness is getting in the way again. I will ask for what I need WHEN I need it.

5. I will not become sad or frustrated by how bad it feels when I am sick, tired or in pain. I will work harder and smarter at what it takes to make me feel good.

6. I will not resent others who seem to complain about the small stuff, especially when it’s a health problem. I will do a better job of reminding myself that life really is a relative experience.

7. I will not become angry with the people whom I love when they don’t notice that I’m not feeling “well”. I will share what I need to share and remember that others can’t really walk in my shoes.

8. I will meditate each day, even for only 10 minutes, because it will make me a more joyful and calmer person.

9. I will not tense with fear when I see that I’m on a path where there is only black ice on the ground. I will practice staying aware so I don’t fall flat on my face.

10. And, finally, I will not forget to give myself a pat on the back at the end of each day. I will remember that if I am not my own best coach and cheerleader, who will be?

Rosalind Joffe, M. Ed.
Rosalind Joffe coaches individuals with chronic illness on how to thrive - not just survive - in the workplace. Drawing on 25 years of living with her own chronic illnesses, 30 years of experience in the workplace, and her extensive training and practice as a coach, she helps others to prosper in their work.
Copyright © 2005 CIcoach.com
All rights reserved (but feel free to copy it, post it, quote it, think about it and forward on to others).

Vanity

2005-12-14T09:43:00.000-05:00

I am frustrated. Frustrated because I'm so sick of people's vanity when it comes to their RA. I've dealt with this for 20+ years and never once did I concern myself with how my hands or any other joints look. I worry about things like joints not properly working or pain or even that RA can kill me eventually. But, I don't worry about the looks of my hands. Gee, they're deformed? Oh really? Wow I did not know that! As long as I can get them to work with the least amount of pain, wonderful. I'll never hide my hands or even try to draw as little attention as possible to them. I just don't care how others see me. While I don't enjoy RA, I also am not ashamed I have it. It's not like I caused it.

I also fail to understand equating having a life as only being physically active. I am not at all what anyone would call active. But, I still have a very nice life thank you very much. I am useful to my family and friends. I like to think (given the comments of others) that because I can't be physically active, I am valuable in helping others understand the beasts of RA and FMS. I'm not the "fuzzy wuzzy hold your hand and pat your back saying 'it'll all be ok'" type but I educate as best I can. I'd never once dream of telling someone in a wheelchair due to RA that I am trying to avoid being in that wheelchair and not having a life. To me that's insensitive, and that's coming from someone who, well let's just say I've never been accused of being overly sensitive but rather a bit cold.

I just don't get trying to make others feel bad with my insecurities. Maybe that is being insensitive to those who are insecure about looks or to those who are vain.

I hate fog....

2005-11-25T13:25:00.000-05:00

not the kind formed by condensation but the mental kind that is common with fibromyalgia and other chronic pain states. The kind that makes people who don’t know you wonder about your intelligence. The kind that makes communicating even the most simple of thoughts hard. The kind that makes you unable to easily comprehend even the most basic of instructions at times.

For me, the fog normally precipitates a major fibro flare. This for me could mean a lot of things ranging from just the fog and mental stuff to full on don’t wanna get out of bed pain. I’ve been trying (for some stupid reason) to ignore the flare. I get them every fall and winter. I guess I’ve been trying to ignore the signs lately because quite simply, I’m sick of this. I’m sick of being unable to do what I want to do when I want to do it. I’m sick of playing pick and choose when it comes to activities. I’m sick of paying the price of even the smallest activities that wear me out. Between the fibro flare and the fact that I’m stiff and achy from RA pain, I’m sick of hurting, sick of a lack of energy. I’m not particularly depressed over it as I know it’s just life with chronic pain. I’ve lived with RA long enough to know that.

Everyone says rate your pain so you can describe it to a doctor. Great advice if I had a normal reference point that others could understand…but how does someone who doesn’t have a normal reference point rate their pain on the normal pain scale? I cannot remember a day in my life without pain. So, to me pain is normal. There are varying degrees of it but it’s not helpful to a doc for me to say my pain is such and such because my perception of pain simply doesn’t coincide with a pain scale. The scale they use with faces even isn’t applicable for me to rate my pain simply because I’ve learned to hide it for so long that unless someone knows me well, they never once suspect I’m in pain. Even people who do know me pretty well don’t always know I’m hurting because nothing much to do about it so why dwell on it.

Introduction

2005-10-28T19:18:00.000-05:00

I guess an introduction is the place to start. I'm Wayney. I decided to create my blog as a way of sharing things about my life, my interests and all. I've got a website (that seriously needs some updating) but I also wanted something more. Here I may just share little things like rants, how I feel, funny stories that happen in our house.