17 May 2012

WAAD and some of the ways I am personally affected by Autoimmune Arthritis

In less than 48 hours World Autoimmune Arthritis Day will go LIVE! You can attend this online event at www.WorldAutoimmuneArthritisDay.org (links to the Event will not be available/visible until the virtual doors open). Registration is highly suggested in order to receive Live Schedule updates and changes during the event. Registration is FREE!
Fevers? Check. Debilitating fatigue? Check Check. Feeling winded? Check. Body pain similar to that after an accident? Check, and even sometimes even worse. I've been in car accidents where I didn't hurt nearly  as much afterward as I hurt with RA. But hey you know, I can just take a pill and I'll feel so much better I can do anything I want-climb a mountain, ride a bike in a marathon, run races? Sure no problem! These medications are pretty much a cure-all aren't they? I mean that's what the commercials tell us, right? So because I can't do all that I must be doing something wrong right? I wish!
You may be wondering why I care so much about WAAD, groups like IAAM who is the host of WAAD and then support groups such as 4RATalk (my online home) and others similar to it. Well, it's not just because I was diagnosed with a type of autoimmune arthritis nearly 28 years ago (yes I was only 7 years old at the time) and have since had another type of autoimmune arthritis, Sjogren's Syndrome (SS), along with a number of other chronic illnesses that are secondary to the juvenile rheumatoid arthritis(JRA). I still cannot train myself to use what they now refer to as JA rather than JRA because after 28 years of referring to what you have as JRA, it's not easy to do.

 Not only do I have two types of autoimmune arthritis, but my mother has two types of arthritis that are considered as autoimmune  arthritis (RA and SS), as well as another autoimmune disease (polymyositis) which is classified as a type of arthritis but does NOT fit the definition of "autoimmune arthritis" as defined by IAAM and the Rheumatology Board that worked to come up with the definition and types of arthritis that fit that definition. The reason is that "autoimmune arthritis"  as defined by IAAM first of all includes primary joint involvement in 90%+ of all reported cases. Polymyositis, an autoimmune disease that is considered one of the 170+ types of arthritis by the Arthritis Foundation, does NOT have joint involvement in 90%+ of all reported cases. The joint involvement is considered secondary. So while my Mom has polymyositis, she also has RA and SS. Her RA was diagnosed within the last 6-8 years and her SS was just recently officially diagnosed, even though I've been telling her for some time that she sure had all the symptoms of SS: dry eyes, dry mouth (so bad water doesn't even help) and dry skin.

I also have another reason for caring so much about awareness and the above mentioned groups. My bestest friend, Mary, was diagnosed over 15 years ago with rheumatoid arthritis, one of the types of arthritis considered an "autoimmune arthritis". She also has scleroderma as well. I may not have had the most effect treatment, or for some time any treatment at all. But, her case angers me because not a single one of her doctors has treated her RA aggressively. And she has more joint damage than I do. None of my docs have brought up joint replacement surgery except one who mentioned it was possible within the next 15-20 yrs and it's been only 11yrs maybe. But Mary has had enough joint damage that her docs have recommended joint replacement surgery or some other type of joint surgery 5 times. She had 4 surgeries in as many years I believe. She started with having joints on her right hand replaced as well as having her wrist fused. The next year, same surgery on her left hand. The third year she had surgery on her right foot where the doctor put a rod in all but her pinkie toe so that her toes were straighter and less painful. He also did something to the large joint on her big toe but I'd have to find out what. The fourth year, same thing on her left foot. That was last summer. Now her rheumatologist is recommending surgery on her right shoulder, or at the very least seeing the surgeon and discussing it. I wonder how much of this damage could have been prevented had they been aggressive in their treatment? But the most aggressive treatment she's had was a 2 disease modifying anti-rheumatic drug (DMARD) combo of Plaquenil and Methotrexate (MTX), a chemotherapy drug used in lower doses to treat rheumatoid and other types of autoimmune arthritis. While many consider MTX to be the "gold standard" of therapy since it is the general first-line therapy most docs reach for, it obviously didn't do much to slow the progression of joint damage for Mary. And that bothers me. Because now, there are SO many choices of medications that more aggressively treat RA that are on the market now, a number have been out 5+ years and yet not once have they wanted Mary on a biologic response modifier (BRM). I've been on 3 BRMs and while I have more than my fair share of damage, I don't have the damage she does. And it's not a contest between us as to who has more damage or who hurts worse. Mary was one of my closest friends growing up. How I, of all people, missed the signs of her RA in her teen years I do not know. Well, I do in a way; she was a softball player, so a lot of the warning signs we just thought were from playing softball. Then when she was pregnant the first time, she felt better. After having her daughter, who is now 16, she got worse. The doctors were not finding anything wrong and I think were chalking it up to post-partum depression to an extent. I may be wrong about that. After having her daughter in April, she got pregnant again in Dec. Once pregnant, she felt better. By then I had recognized the signs. I kept on her about not taking the answer of "You're fine" from the docs. But it wasn't until after her second child was born in Aug and she worsened again, as it typical for women with RA who have a child, that they finally made her diagnosis of RA. Like me, she is sero-negative, which means that the marker for RA, rheumatoid factor, is not present in the blood. 75-80% of all people with RA have the marker in their blood. This is called sero-positive or RF positive. Those remaining 20-25% of people who do not have the marker are sero-negative or RF negative.

In many cases, doctors like to make a patient think they are fine if they are sero-negative. But that doesn't mean they are fine. It simply means that in many cases, they'll have a less active form of the disease. There are always people who don't fit that profile as well. Just as there are many sero-positive people who have a milder form of RA. In the past, to receive a diagnosis of RA, there was a list of 7 items, and 4 of them had to be present, some being present for more than 6 mo, before a patient was considered to have RA. It was not 3 of 6 AND being sero-positive as many docs made new patients think.

Here are the 2010 ACR-EULAR criteria for classification of RA: http://www.rheumatology.org/practice/clinical/classification/ra/ra_2010.asp

Here's what my daily  reality of having RA, SS, as well as  a number of other types of non-autoimmune arthritis is like:

I wake up. Even before I open my eyes, (if they've not gotten so dry in the night that they've almost gotten stuck closed and need a good bit of a rub to be able to open them) I am taking stock of what hurts. Or some days it is shorter to list what doesn't hurt pretty bad. Then I begin to gently begin flexing joints as a measure of how stiff I am and how soon I'll be able to move.If I was smart the night before, I placed my morning medications within reach of my bed. And then also I hope I've left myself enough of a drink or an extra bottle of soda so that I have enough of a drink to swallow at least 10 pills.  Some of which are as big around as my pinkie and as long as from the tip of my pinkie to the first joint. I also hope I don't have trouble swallowing, don't get a pill stuck or anything like that. If a pill sticks in my mouth, say between my cheek and my gums and it starts to dissolve, I'm in for a NASTY taste in my mouth that is hard to get rid of. If I am lucky, it won't be prednisone that gets stuck because then, the taste would be so awful it would put me in danger of being sick to my stomach and wasting the other pills that did go down. To put it in perspective, here is my morning dose of medications: 
Morning Medications 10 pills
I then decide if I must get up before the medications kick in or if I can wait a little while. It partially depends on if I have to go to the bathroom, if I am wet already and how wet I am, and if so am I so wet that if I go potty again before I make it to the bathroom, I will leak. That's just one decision and one factor in how soon after taking medications I have to get up. Was I supposed to be up an hour ago because I have a morning appointment and need to shower and slept through my alarm? Do I even have time to get dressed before we need to leave or should I just call and reschedule IF I can do so without being charged, which is unlikely with many doctors. There are all kinds of things that may mean I need to get up before my medications kick in. If possible, I will wait though.  Then when I get up, I can go to the bathroom and not worry that in my rush I will trip and fall. I can stop and grab clean clothes so that while I am in the restroom, I can go ahead and get cleaned up and dressed. Some days, first thing in the morning, I may wait to get dressed for a bit. That way I am not pushing while I am dealing with the wrongly named "morning stiffness". Why is it wrongly named you ask? Well, I say so, because for many people, it doesn't occur ONLY in the morning. I can occur at ANY time of the day. Some people cannot sit still for more than 30 min. without getting very stiff. For those people who also have fibromyalgia, the same thing occurs with the muscles and many people tend to call that "gelling" because you feel like your body has set kinda like Jello. After all this, I may sit in my wheelchair—office chairs tend to roll when I go to sit down in them and I cannot afford a fall so I sit in my wheelchair so I can put the brakes on and know it isn't going to roll away from me—and get online. If I feel really bad, I get the items I need to keep me occupied and crawl back into bed. I may end up turning my monitor, and moving the keyboard and mouse over to my bed so I can be online AND in bed. But  some days I just know my brain fog, whether from RA, fibro, a lack of good sleep, pain, or just a storm of them all, is too much to be able to be online and productive.

Then approximately 3 hrs after taking my morning medications, it's time for a dose of a pain med. This is not a scheduled dose exactly, although I tend to take it around the same time every day. I do so because the act of getting up, getting cleaned up, getting dressed etc. takes a big enough toll on me that it's best I take a PRN pain pill to keep ahead of the pain in a way. But thankfully, the PRN pain med I am currently taking is a fairly small pill! I also tend to take the medication I need to help control my dry mouth. I was diagnosed with Sjogren's Syndrome between 6 and 8 years ago. It is an autoimmune syndrome that causes problems with dry mouth, dry eyes, dry nasal passages, dry skin, and for women, dry vaginas. We're not talking just a little dry. We are talking gritty, sandy, painfully dry eyes that are prone to getting scratches at times because they are so dry that you tend to want to rub them to try to get some relief. Mouths so dry that you get the feeling of the worst cotton mouth you could ever imagine. It sometimes feels so dry that you could swear your tongue is swollen.
PRN or As Needed Medications 2 pills
Now that I took a break for medications, I can go back to whatever it is I was doing. Some days it's just sleeping. Sleeping ALL day, and most of the night, until you feel like if you don't get moving you're going to go nuts. Other days, I can be productive online but not around the house. Still other days I may be able to help out around the house a little bit. Maybe do some dishes, cook a meal. I may need to begin shortly after noon to get things prepared to make dinner. But if I can do a bit, rest, do a bit, rest, etc., it makes it so much easier on my body. I was not finding cooking easy when I first came home. Trying to do prep work at the table, across the kitchen from the stove, microwave and sink was not easy. But at that moment, if I wanted to cook, that was my choice. UNTIL, our friend whom we live with, was moving furniture around. Since no one ever used the bar stools to sit at the bar dividing the kitchen and living room, she was gonna put them in storage. Why I'd not thought of that sooner I do not know. It's not as if I can claim not to see them. They were right by my head where I slept on the couch!!! I even used them to sit stuff on since I really couldn't reach the counter top from the couch. So we moved one into the kitchen and now I can cook much easier. I just need the energy more often to do so and it's a bit frustrating sometimes to want to do more but know that either you will pay for the things you do and end up in bed for a few days because of the fatigue OR you will have pain levels that are very much higher  than normal. On a REALLY good day, I may even attempt some laundry! I usually need help carrying the basket to the washer, then I can take care of the rest. Until it's all done and I need help carrying the basket back to my room. I did find a way that I can carry the basket sometimes! When I was in the nursing home, and in physical therapy, I had to have a gait belt on when I first started walking. It kept me safe! I found out a couple times just how well a gait belt can work at stopping a person from hitting the floor! That and the catlike reflexes of the PT who is working with you! Jim always caught me thankfully. Neither of us wanted to do the paperwork on a fall!

 Oh by now, three hours have passed.Yay! That mean I can take what would be considered my "noon" medications IF I took my morning medications on the schedule I was used to taking them at the nursing home. But sadly, I can set my alarms (usually 4 sometimes 6) and sleep through them. Especially if I was awake late in the night and had just fallen asleep an hour or so before the alarms go off. So they are labelled noon for lack of a better term. And since when I wake up, it's my brekkie time, this is my lunch time (if I ate lunch) and typically people think noon when the think lunch right?
Noon Medications 4 pills
Well my day is moving along. By now I have posted on 4RATalk.com where I am an admin. I keep starting to type moderator. i am so used to referring to myself as a mod there because I've been one for some time now. Before I got sick. But because the site owner is facing the fact that her husband is having major surgery sometime in the near future (hopefully sooner rather than later), then she wanted someone who could approve new members, clean up any posts that should not have been posted (spammers), help people with posting something they are having trouble posting, help change avatars for people, reset passwords in the event they were lost or otherwise compromised. etc. The group is a great group, friendly, extremely supportive, wonderful people. I have to stop myself from saying ladies rather than people because we do have one man posting!

Oh another 3 hrs have gone by! Time for more PRN medications!

PRN or As Needed Medications 2 pills
Another PRN pain pill and another pill for the dry mouth.Back to do what I do. Sometimes I post news articles that are relevant to the folks at 4RATalk. I try to post under Newslady, but many times I just completely forget to sign in as Newslady rather than Wayney. I post as Wayney most of the time there.Sometimes I will take an afternoon nap as well but I generally do not like to do that because I have a hard enough time sleeping some night that I don't need to have slept during the day.

Ok wow! Another 3 hrs have passed! Time for my evening medications.

Evening Medications 3 pills
By now my hubby has gotten home from work and made dinner for me. I am still just doing my thing. Sometimes I decide to just goof off an play a game called Bubble Town.  Other times I am watching TV. I watch HGTV a lot and then History some too. .I also like Jeopardy! That's always a fun show. I will even admit to liking Wheel of Fortune. Sheesh...If someone read some of my comments etc, and knew I liked those shows and was sometimes asleep before seeing Final Jeopardy, one might think I was elderly.  No, I do NOT eat a lot of JELLO or go to the ubiquitous "Early Bird Specials" for dinner!

By now it's almost time for this woman to be heading to bed. Thankfully, another 3 hours have passed! Ahhhh the relative comfort of having a hospital bed to sleep in! I learned a bit of a trick at the nursing home. When making the bed, if you have extra flat sheets, and an extra fitted sheet you can add a bit of extra comfort to the bed. Place a fitted sheet on the bed. Then fold a flat sheet so that it horizontally covers the area where your rear end tends to be on the bed. Then fold another fitted sheet so that it covers the area vertically where you tend to be stretched out. Add a 3rd sheet horizontally and then cover all of these with your regular fitted sheet and you'll more than likely notice that it makes a hospital bed mattress a bit more comfortable and plus, you do not hear the mattress sounding all crinkly because it is covered in plastic or vinyl. 
Bedtime medications 6 pills
If I am able to sleep well, I generally do not wake in the night needing medications. This is good because I've more than likely taken all of my allotted medications during the day. I do have days where I don't take all of my PRN doses of medications so IF I didn't take all of them during the day, THEN I can have a PRN pill. If not, then I really have to think whether I wanna take from my PRN doses for the coming day. If the pain is pretty annoying, then I'll go ahead and take the pill. I am a big believer in treating the pain as soon as possible after it starts most of the time. But, there are times I have to take a less than aggressive attack on treating breakthrough pain (BTP). If I do take the pill, that is one less pill I can take during the day. So it's not always an easy decision to make. But in 7 hours, I will be starting my med day all over again! Fun fun! But, I am very grateful for the medications I have, I am especially blessed to have such a great pain doctor, who is proactive about treating my pain. I am also fortunate that he has an awesome nurse practitioner working with him.She knows what pain feels like.

Daily Medications with Bottles
Close up of Doses of Daily Medications

As a last look, here is what all of my medications look like when seen all at once. The picture at the left with all my medications out (I did not repeat the PRN doses) and their bottles, with the names of what I take and how many times I take them per day listed under neath.  On the right are the pills close up. None of the pictures  show the 2 calcium pills or 2 vitamins I take as well. Including vitamins, calcium and what is shown here, I take 31 pills per day! This does NOT include anything I have to take to treat headaches, colds, infections, etc. which happens more often than I'd like! The pics that are broken down by dose also do not show the eye drops I have to use several times a day (thank you Sjogren's Syndrome) or the various creams I need to use. At times I have to use an anti-fungal cream because I get a rash in my underarm areas that can spread across my chest and under my breasts, and sometimes under where my gut hangs over my waist (thank you pred and inactivity) as well as the creases of my legs where the brief rubs against the skin. At first it was diagnosed as a heat rash. And heat does have an exacerbating and  irritating effect on it. But, it's not as simple as a heat rash. Heat rashes do NOT last for more than 3 YEARS! And generally they are confined to areas where you have skin touching skin. Mine started in my underarm area, yes. But it wouldn't have spread across my chest if it were a simple heat rash. Heat rashes tend to go away when there is a lowering of the level of heat as well. And generally heat rashes are itchy. This oddly was not. No I was the lucky? owner of a fungal rash. The 10 yr old in me is saying "I guess that makes me a fun....gal." Don't worry, I am disappointed in how bad that was myself. I'll not insult good jokes by calling that a joke either. I guess my son and hubby and their weird senses of humor have taken their toll on me! Anyway, where was I? Oh yeah, fungal rash. While I was in the hospital, the rash got so bad that it caused the skin of my underarms to crack open in places! Yeah that was fun. They were treating it with different things. But it was not until I went to the nursing home and they decided to try something different on it. I cannot remember which of the nurses made the decision to ask the doctor for Nystatin cream and/or powder. But whomever it was, I am so glad she did! It took awhile and application multiple times a day. Oh joy. But that did the trick! I was so thrilled to see normal skin. It took awhile to recede. And my underarms were the last to heal, but they'd had the rash longest. And then we also found the the creases of my legs breaking out wasn't entirely the fungus. Nope, it was that I have an extreme sensitivity to briefs and pull-up type undergarments distributed by a specific company. I can use the brand of brief and will break out into raised areas that resemble hives. If the contact cannot be avoided, the area eventually becomes extremely sore, it burns, and if I get too hot and end up sweating, the pain is enough to cause me to almost scream because sores+sweat=intense pain. Not even the cream that finally made the fungal rash disappear touched that. It was not until the nursing home switched to a brief made and distributed by a different company that my skin healed. The difference in how that made me feel overall was like night and day. Unfortunately, Medicare contracted with the manufacturer of the briefs that break me out and the nursing home had to switch brands. Within 2 hours of using those briefs, I was broken out. And it took over a week to heal—just from 2 hours in a product that I seem to have a major sensitivity to. Thankfully, the nurse who was working that afternoon documented the rash, how painful I reported it, etc. Had I been thinking, I'd have handed the aide or the nurse my phone and said take a picture of it and would have had that documentation. But I was not thinking. So, thankfully, there were a few pkgs of the briefs I CAN wear on the various stations at the nursing home. And since it was a definite problem, the nurses sent the aides to go get them for me to use. Eventually, I had used up all the ones that had been leftover. So, the decision was made to order some of the ones I could tolerate and justify it as a medical necessity. I am so thankful they did that. After coming home, I had decided to try the pull-up type of undergarment. One of the aides had gotten me a pack to try and I just had not yet tried them. I wish I never had. I put a pair on and began feeling uncomfortable. So I just shrugged it off as a different product. But the feeling worsened. So I went to investigate. I again had what were larger than a quarter to just slightly larger than a half-dollar coin sized areas that were hive-like, again there was a burning feeling. So I grabbed the package and looked and yup, it was the manufacturer of the brand of briefs I cannot tolerate. Oh joy. So needless to say I did some searching to find out where I could get the brand of briefs I know for a FACT do not cause me to break out.

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