Happy 30th Anniversary????

Happy(???) 30^th Anniversary!

On 21 September 1984, after spending a  week in the hospital at Riley Hospital for Children in Indianapolis, IN,  we heard the words that would forever change my life. I had been in the hospital all week. But unlike the rooms where most hospital stays occur, this room was more like an efficiency room in a hotel, a private room with a small refrigerator (I think), of course a private restroom. There was less a feeling of being hospitalized and more a feeling of just staying there for tests because it was more convenient. I vaguely remember being seen by quite a few doctors and nurses as well as having lab-work, X-rays, eye tests, and other exams. We had went into the situation with a fairly good idea of the outcome. The problems I'd been having for awhile were getting less scary and more of a hassle than a major worry. i don't know if I got more used to the pain and so woke up less in enough pain to scream as had happened at first. Or if I just got used to it enough that it no longer took me by such surprise and was a shock to me. In the beginning, Mom, like most parents would have, assumed I was having nightmares. And in a way, she was right, I was having a major nightmare, but not in the way most parents consider the use of the word nightmare. I was so wracked with leg pain that i was unable to move my legs. The stiffness and pain was unexplainable really beyond the tears and saying I hurt. So, like most parents, she took me to the doctor. He was one of those old country docs who practiced in a tiny rural town in the early 1980s. I later heard that he did not have a good reputation amongst older family members, which I don't believe Mom was aware of. We left there with no clues as to what was going on. All that doctor would tell her was that I had "growing pains". But something about that just didn't sit right with Mom. I wonder if her own pain led her to see that my pain was very real and went beyond what is typically described as "growing pains". In addition to waking up at night, screaming and complaining about leg pain as well as being unable to move them, I also had a problem with my right ring finger that we later found out was called a "trigger finger" as well as a ganglion cyst on my left hand.  Over the last 30 years my hands have changed to what is now noticeable damage and misshapen fingers but not to the extent in the drawing below. I do have each of the items mentioned: boutonnière deformity in my thumbs, ulnar deviation of my hands as well as swan-necking of the first joint of some of my fingers and hypertension of the middle joints on some fingers. The  drawing is much worse than my hands are thankfully.

Needless to say, she took me to a different doctor in Danville, IN. This doctor, after examining me, declared that he was not about to treat me and that I needed to be seen by a specialist at Riley Hosp. for Children in Indianapolis. His concern was that I had either a muscular dystrophy or a form of juvenile arthritis. The next I remember was the week-long stay at Riley, which culminated in the official diagnosis: seronegative poly-articular juvenile rheumatoid arthritis, quite a mouthful for a 7 yr old! The seronegative part simply meant that there were none of the markers of JRA in my lab work, a not uncommon occurrence. In adults, at the time, at least 20%

of patients with RA were seronegative. My erythrocyte sedimentation rate, or SED rate for short (aka ESR) was elevated but it can be elevated with any kind of inflammation in the body, including infections. I had a lot of problems with upper respiratory and ear infections so having an elevated ESR was not too out of the ordinary. But I was never positive for Rheumatoid Factor (RF) at any point in my life. According to Lab Tests Online, RF is: "Rheumatoid factor (RF) is an autoantibody, an immunoglobulin M (IgM) protein that is produced by the body's immune system. Autoantibodies attack a person's own tissues, mistakenly identifying the tissue as "foreign." While the biologic role of RF is not well understood, its presence is useful as an indicator of inflammatory and autoimmune activity." I have NEVER tested positive for ESR in the past 30 years. There are more tests now that they can use to lead to diagnosing RA or distinguishing between the various types of arthritis but the last I recalled, i am either completely negative for those tests that the results are either negative or positive, or for those that have a cut off of the normal levels of what is being tested for in the blood, I am under that normal level. I have been tested for the Sjogren's antibodies, anti-CCP, CRP etc. and even now everything is either in normal ranges for that particular test or is negative. My labs still show that I am sero-negative 30 years later. Again, my SED rate is often elevated but that could be infection related as much as anything else. 

I recall the doctor thinking when we first got there that I had some form of juvenile arthritis most likely.  As the week wore on and tests were done and results were in,  I think he was more and more sure of his original thought. I remember that Mom was certain that since it was my body and my life affected by the diagnosis, that she wanted me to be told everything. I had to know what I was dealing. I don't know if my doctor, who at the time was Dr. Murray Passo, agreed with her that it was the best choice or not, but, he went along with it.  And for me, it worked. By the time I was 10, I would go to the reference section of the library and read medical books for fun. Not that I understood the greater portion of it but I understood enough. I was used as a teaching student. I was at the clinic enough that it made sense to have me as one of the patients that student doctors visited on their trips through the clinic. After awhile, because I tended to pay attention to what the doctor said, I began to be able to answer his questions if the students would or could not. It was not any great feat of intelligence I can be sure of. It was quite simply repetition. No matter a child's age, if they hear something repeated over and over, especially about themselves, they are likely to remember it. I was 10 when I asked about how RA shortened people's lives, which I think was surprising to many people. I know at one point, Dr Passo had told me the worst case scenario —that by the time I was 16, I'd not walk again, I'd be on medications for the rest of my life, I'd not work part time even let alone full-time and I'd not marry and have a family. I was determined to prove them wrong. At 10, was my hand surgery. Because of the concern of giving a child pain medications for more than a few days post-op, I did not have adequate pain control when it came time to begin PT. It was then I began considering PT to be patient torture vs physical therapy. But, I also had a hard time explaining how I hurt beyond say "I hurt," which admittedly makes it hard on a doctor to know if the child truly is experiencing pain and is used to it enough that the typical reactions to pain are not there (I can be in a lot of pain now and no one but those who know me well can tell IF I am not wanting it to show; after this long of my being filled with some amount of pain everyday for as long as I can remember, you tend to learn to mask it) OR if there is something else bothering them.  I know many of my doctors in the past had a hard time believing I was really in the pain I said I was in. Another reason I think I have such difficulty in explaining how I hurt id the fact that I truly do not remember what it is like to be pain free. I know at some point in my childhood I was pain free but it was so long ago that I do no remember it. It's as if between the time that has passed and all that my body has experienced, that those pain-free days have been pushed out of my memory.

 I do know that Dr Passo was a great doctor. Looking back, it might be wondered why I was never put on any of the disease modifying anti-rheumatic drugs available at the time. Or why I'd never been given ______. The biggest reason is simply that I was not considered to be a severe case of JRA.  This was during a time when ibuprofen and naproxen were beginning to be studied as treatments for kids with JRA. There was hope that they would work well enough that the stronger drugs with the worst side effects could be avoided. This was before the practice of "early aggressive treatment" was given the emphasis that it is given today. We know now how important it is to slow the progress of JRA in children and RA in adults as early as possible. We know now that it is in the first 10 years that the most damage occurs in those patients who are disabled by RA or JRA. As Dr Passo explained it to me, the difference between the three forms of JRA, pauci-articular, poly-articular and systemic are: those with pauci-articular JRA tend to have five joints or less affected; those with more than five joints affected have poly-articular JRA and those with salmon colored rashes, daily fevers, etc in addition to the five or more joints being affected are those with systemic JRA. As it was explained to me, polyarticular JRA is much like adult RA while systemic JRA is also known as Still's disease, which generally occurs in children but can wait until adulthood to begin, in which case it is known as "adult onset Still's disease" (AOSD). That said, poly-articular JRA, (which I will hereafter refer to simply as JRA and the other forms by their longer names) as well as adult RA both have components of the disease that are systemic. The low grade fevers common to many patients with both JRA and RA, especially during periods of active inflammation is common as is fatigue, feeling flu-like, etc. For many patients of either, slow healing cut and sores are common as is increased bruising. The bruising can be related to certain medications, primarily prednisone or other glucocorticosteroids but in some people can be part of RA/JRA. I was not on any glucocorticosteroids of ANY kind until after I was 2 and had my son, yet I bruised VERY easy as a pre-teen and teen. Even into adulthood, I bruised fairly easy. At one point in my life, I was seeing a physical therapist who, during the course of the treatment ordered by my doctor was leaving rather large bruises on me. They were not overly painful, but the PT was concerned at first as to what my husband would say when he saw them. I assured him that my hubby would know about them before seeing them so that he was not upset over them. He knows my easy bruising nature anyway and so is unlikely to become angry before giving me a chance to explain. I can understand the PT's concern  as well since I was bruised from neck to the back of my thighs, because he was doing myofascial release massage therapy, which released the knots formed by muscular waste chemicals that would build up in the muscles. It was hard work in a way to have that type of massage therapy. The waste that was broken up and released into the system caused nausea and sleepiness on the days I had therapy. So while it felt good in a

way to have those knots broken up, the sleepiness, fatigue and nausea were too much. 



After my first pediatric rheumatologist transferred to a hospital in Cincinnati, OH, I got a new

doctor that I don't recall much about. I don't recall caring much for her but then again, I am not sure if that is the case, or if she just doesn't compare one bit to Dr Passo.  I do remember him a being a great doctor. And he is the one who started to encourage me to learn all that I could about my JRA. He taught me quite a bit as well. And of all the doctors I've met over the last 30 years, and there have been quite a few, he's been one of those I have had the best memories of. I still to this day, even though it's been probably 20 years since I've seen him, would trust him implicitly. Although, in many ways, he made it hard for me to find other doctors to live up to the standards he set. I have been blessed to have a few who do.  And for those I am thankful. One of my biggest ways of knowing if a doctor will work out is how much they value a patient's knowledge. If they have a problem with patients who are well-informed about their diagnosis, then they will not work for me. I will not be treated as if I don't know my own body just to make a doctor like me better. And the doctors, as well as other health-care providers that I see currently all seem to value that in a patient. i am blessed with a great health-care team right now. I am thankful for that to be honest.  Because while I know my own body, and what is and is not normal for me, that's where my knowledge stops. Yes, I know quite a bit about rheumatic diseases but not as much as a doctor who specializes in them. But the best thing is that I do know what is and isn't normal for me and after 30yrs can usually recognize the abnormal. I say usually because as was proven in 2008, there are times a med can mask what would be normal symptoms of a problem that I was well-aware of what the symptoms felt like. Yet, when you have no symptoms of a problem, you can't exactly know it is there!  Thankfully, the medications that caused that issue are no longer ones I take or are ones I still take but at a MUCH lower dose.

Will I ever live a "normal" life again? Of course not. I have way too much joint damage as well as too much deformity etc to have what would be close to a "normal" life. But, while I know that JRA may have taken its toll on me, and it may have won some of the battles, it has NOT won the war. It can only do that if I let it knock me down mentally as well as physically.  And I will NOT let that happen if I can help it. I may not be able to do as much as I was able to do physically before the "long vacation" but it hasn't totally won yet. For that I owe quite a lot to the influence of many people over the last 30 years. But I would not have had as many tools to fight with had it  not been for Dr Passo as my diagnosing doctor. Don't get me wrong, Mom insisting i be told the truth had a big influence on me as did the influence of a number of family members.

Limiting pain

I was going through Mary's FB pics from her trip here last month and just kept going farther back and found this. As hard as it is for most people with chronic pain, I am blessed in that I KNOW certain family and friends, unfortunately, truly do understand my pain and my limits.

Many people run into trouble with in-laws not getting it, but my in-laws all understand since almost all of the females have been touched by RA or fibro, etc. My guys are great about understanding and not making me feel feel bad... I still do but that's just normal.

Mary and Mom both understand because they both live it. Some friends do try to protect me from myself when I am overdoing it or am considering doing something that would not be a great idea. Some friends and family just do not get it though. And there's nothing I can do to make them get it sadly.

I've written a piece about what RA is like but that doesn't even help some people understand. I was once told that what I wrote was "too negative" and "too dark", but unfortunately that's what RA and other chronic illnesses are at times: dark and negative. That's not to say there aren't light and happy times. For many of us, those times are what keep us going during the dark times. And in all honesty, there are times the positive far outweighs the negative, and it is precisely those times that keep us going during the negative times. Having had a pretty rough period, I know that if not for those positive times during that rough period, as well as the prayers and good thoughts of people all over the world that I'd not have done as well as I did.

No one likes to be limited. But, in all the years of living with RA, one thing I've learned is to do my best to focus rather on what I CAN do than what I cannot do or what I am limited in doing. That lesson was brought home to me at the nursing home. Any progress was celebrated. And with Jim, the word "set-back" was not in his vocabulary it seems. There were times I felt a flare was a set-back, but not Jim. He kept telling me that IF I went back in the hospital or did something incredibly dumb (my term) and got injured then I could say that was a set-back. But he was right (as he usually is!) and something that is (or should be) a normal and expected part of a disease process happening is NOT a true set-back and therefore should be viewed as just part of living with a chronic illness.

Appointment at pain management

I had my bi-monthly pain appt. It went as it always does. Spent a bit letting Stacy know life is as usual, she asks the standard "How have things been?" question that I know answering with "fine" will get me the look. I don't know exactly how to describe that look either. It's almost one of those Mom looks that we use when we know there's more to the story than what we're being told. But it's not quite as maternal as the Mom look. But it's a look that says she KNOWS there's more to it than what I am telling her. I told her that there's nothing more than the normal ups and downs of life with chronic illness. That I couldn't complain....to which she replied, "Yes you can." I had to laugh at that because we've discussed in the past how complaining about the normal stuff that can't be changed does me no good. I told her about my new meds. We discussed my request to change how I take my Neurontin and Robaxin. If I took meds as they are supposed to be scheduled it'd go a bit like this:

• 6 am: Neurontin, Robaxin, Prednisone, Vesi-Care, Provigil, Plaquenil, Omeprazole, Calcium, a Multivitamin and then 2 ea. Methadone and Guaifenesin.
• 9 am: Oxycodone Technically it's PRN and I don't take it if I don't need it, but when I am up early, I am usually getting myself cleaned up and dressed around that time of day and need it then. At the nursing home, most of my nurses didn't ask or make me ask if I wanted it since they knew I always wanted it.
• 12pm: Neurontin, Robaxin, Metoprolol ER
• 2pm: 2 Methadone
• 6pm: Neurontin, Robaxin, Acyclovir, Oxycodone (PRN)
• 10pm: 2 Methadone
• 12am: Neurontin, Zanaflex, Plaquenil, Folic Acid, Arava
• 3am: Oxycodone (PRN if I am awake and need it, which is many nights)

That's a bit much. 4hrs at most between doses. And that list doesn't include any Salagen, which I can have twice a day or anything for headaches. It's a lot better than one of the nursing home med schedules they had me on. It was wacky. I didn't have but 2 hrs between a doses a couple times a day. I took meds at 6am, 8am, 9am, 12pm, 2pm, 3pm, 6pm, 8pm, 9pm, 12am & 3am. That didn't last long and thankfully Dr Wilson was great when I told him it was driving me nuts. He sent the unit mgr to work out the schedule I wanted. I don't know if that happens with too many people. But he was also the doc that if I asked for a med and a nurse backed me, I definitely got it. It didn't always take a nurse to back me either. Many times I asked and he said sure. But then again, I am not the type to just ask for meds just to get them. If it were up to me, I'd not need meds. But unfortunately, I do. So I have no choice. I've learned my lesson about leaving RA untreated. It causes more problems than it solves.

Stacy said that I could adjust the timing within limits. If I wanted to go longer than 6hrs, I could. Not shorter of course but that's not what I needed. She changed both the Neurontin and Robaxin scripts to read PRN, that way if I didn't need them a month after my fill date, the pharmacy didn't hassle me about not properly taking meds. I appreciated that. She said I didn't HAVE to take all 3 Robaxin and all 4 Neurontin if I didn't need them. But I know I need them most of the time. Now when I am in one of those major fibro flares where I am doing nothing but sleep 12-18 days then I may not need them. But I usually do because I definitely notice when I miss em. Especially the Neurontin. The neuropathy gets so bad that I just feel as if my hands are burning and tingling. And anything touching my feet, including socks, has me in that amped up pain state. So because she said I could make changes, I am gonna. What I am doing is dropping the Zanaflex and taking 3 Robaxin a day. Or if I get to where it's not letting me sleep, I have 2 other options. I can double up on Neurontin at bedtime if the neuropathy becomes an issue. The other thing I can do is drop to 2 Robaxin and take Zanaflex at bedtime. That may be what I end up doing. IDK yet. Now with the changes, my med schedule looks like this:

• 6am: Neurontin, Robaxin, Prednisone, Plaquenil, Provigil, Vesi-Care, Metoprolol ER, Prilosec, and 2 each of Methadone and Guaifenesin
• 10am: Oxycodone PRN
• 2pm:Acyclovir, Neurontin, Robaxin, and 2 Methadone
• 6pm: Oxycodone PRN I only take this if I really need it, although many times, I don't need it. 
• 10pm: Neurontin*, Robaxin, Folic Acid, Arava, Plaquenil, and 2 Methadone. *I am allowed a second Neurontin if I need it. 

She was glad I had success with Candyce. We were discussing the addition of acyclovir to my med list because of shingles. That got us discussing the shingles vaccine and whether people who have had shingles can get the vaccine. I thought I'd read that they could but didn't know for sure. (I looked again when I got home.  And that is what I'd read. So I left her a FB msg about that.) Then as she walked me out to the desk I told her again how glad I was to be back in her care. She hugged me and thanked me for saying that. Then I just had to wait on Gar to finish up with his 2 runs. He had 2 ppl at appts and needed to run them home, then he switched vehicles and got his paperwork for today so he could just come home when he picked me up. I kinda crashed for a bit, then looked up the info I wanted to find for Stacy and sent it to her and called Mom and that was it. I was wiped out.

Now I have NOTHING appt wise until 9/25 when I see Stacy at 2 and then labs at 3:30 and I see Candyce at 3:45! That will be interesting!

Follow-Up with New Nurse Practitioner

Follow-Up with New Nurse Practitioner

Another good visit all in all. The nurse Joyce is great. Shocked her by telling her a bit of my past. Especially about the not walking part and docs at the hospital saying how it was unlikely I'd do so or even live at home. Her jaw dropped and she said, "So where are you living now.?" When I told her that I've been home since Nov. 2011, she was happy to hear that. I've somehow managed to drop 2lbs. It took no time for Candyce to come in. I like her. She's not the type to sugar coat things. She did acknowledge that she had to tell me things she knew I was likely aware of just to make sure I knew. It was nice to have it acknowledged that I am a pretty-well informed patient. There's a lot of good news/bad news. Good news on x-rays: my cartilage in my knees is not bad. Which leads to the bad news (that was no shock to me as I had a guess what showed. The pain and swelling is RA, not OA. There's erosions, which to be honest is not shocking as out of the 28 years I've had JRA/RA, I wasn't on DMARDs until 2002. I was on Plaquenil/MTX in varying doses for a little over a year in 2002-03, then off meds until 2006. And then I was on MTX, Arava, Imuran, Enbrel, Humira, and Remicade in various combos until Aug 2008 when I went off Remicade because I lost insurance. I did have Arava, Neurontin and some other meds until Dec 2008 when I got sick on Dec 12 with what I had thought was the stomach flu at first, but after 3 days realized was likely not the flu and was possibly another UTI. Then no DMARD until I restarted Arava in 2010. But that's another story for another day...or week. So the fact there are erosions in my knees, hands, and wrists wasn't too shocking. She doesn't think Arava is enough which is why she added Plaquenil, it's as much for the Sjogren's as it is the RA as she did say Arava doesn't really help Sjogren's. She is planning adding Rituxan but NOT until I can deal with the dental issues that the Sjogren's has caused, because she said to do so is basically sepsis waiting to happen! Even if she felt the risks outweighed the benefits, which I don't see any sane, responsible doc doing in my case, I'm not too willing to risk it, given what all happened the last time I had sepsis. Missing 3 full months and large chunks of another 6-9mo of my life  is NOT something I want to risk if I can help it.

Again she addressed issues before I could ask my questions! On my list was med refills and we started with that list. I also wanted to ask about her mention of a shingles preventative at my first visit. I wondered if, since the treatment for shingles is the same med as for other forms of herpes (antivirals like acyclovir, valacyclovir, and famciclovir) and the maintenance dose to help lessen the chance of  outbreaks of the other forms is taking the med that treats it in a lower dose daily. I don't recall what I was on dose wise for treatment but she verified that I was right in thinking that the treatment and preventative meds are the same ones and she put me on acyclovir 200 mg, once a day. (I later recalled that the 3 times I do remember being treated for shingles, I took meds something like 5 times a day, and the dose of acyclovir for treating shingles is 800mg 5x/day.) She also decided that since my BP was up (for me not as much as it has been in the past) around 140/110 we're treating it. She chose a beta-blocker, metoprolol er 50mg/day. I was on metoprolol in the past. So that's good because I don't recall any side effects. Except good ones, such as less headaches, because it lowers my BP. When my BP is high, I tend to get really bad headaches.

My DEXA scan showed severe (although she didn't give me the numbers) osteoporosis (OPO). Again, just part of corticosteroids, although I forgot to mention that I'd had the OPO dx long before ever taking any form of corticosteroids. And of course she is putting me on something for that. I don't have details yet; she said I'll probably get a call within a week or two. She is referring me to a place called Palmetto Infusion (where I went for my Remicade) for Reclast. She likes that it's once a year and I'm done. Little chance of me being non-compliant! I am good with that. But she said it will do little good to start Reclast unless she also addresses the issue with my Vit D being very low (again no mention of level). I can ask for copies of labs and the results of the DEXA and x-ray reports. I just had so much on my mind  that getting that was the last thing on my mind! So she prescribed Vit. D3 50,000 IU once a week for 12 weeks. I did forget to ask if she wanted me to continue calcium w/vit D or switch to straight calcium and what dose she prefers me on so I called and left a msg with Joyce about that.

Her plan for AFTER I deal with my teeth is to have me get Rituxan infusions. And then after awhile on that and hopefully seeing the improvements many people see, she will send me to a DO who has a good success rate with helping contractures as well as starting pool therapy. I need to let her know of the issue I have with even heated pools causing me to have serious muscle problems for days after being in the pool and doing nothing (since I can't swim) but stand in shoulder deep water. But, who knows, I may not have that reaction any longer since I am on meds and when I had that reaction I wasn't. That was right around my fibro dx. She did say IF I wanted PT we could discuss it then. So basically neither she nor Dr K wants me to have PT right now! Which is good and bad. So I get to look for options for dental ins. and possibly have to wait out the pre-existing issues clauses. But I'm not dealing with ANYTHING else health related today except a stop at the pharmacy. Tomorrow is soon enough. But today I have other plans!

I have the remainder of the eye testing Thurs. and then NOTHING ELSE until the end of July! YAY!!!! I don't go back to Candyce until 9/25. She gave me 3 mo of everything with 1 refill on everything except the Arava and Vit D. So, can't complain there! My biggest concern was not knowing how she was on pred use and then what happens when it started causing cataracts. But she seemed to feel as I do about it. She acknowledged that she was sure I knew a few things about pred but that it is a band-aid approach that controls the symptoms not the disease. I am aware of that but given I cannot take NSAIDs daily, pred is my best option (although somewhere I read that it has DMARD-like properties in addition to the anti-inflammatory ones but that's not many who feel that's true). She also said that cataracts are common with pred use, especially in higher doses or with long-term use, both of which fit me. Although that high dose no longer applies and I am trying hard to keep it that way! And so aside from forgetting I needed that script, which she asked me to double check and make sure she got em all and when I looked, I missed that she skipped 2 meds I needed. I caught one before either of us left the office, just as she was walking out the door, but the pred I didn't catch until late last night when I was telling Mom about my new meds. But I have enough to last until sometime in July so I can call and ask them to either call it in or have Gar pick it up sometime between now and when I run out. 

My meds are now:

Acyclovir (shingles prevention), Arava (RA), Folic Acid (side effects of Arava), Guaifenesin (chronic sinus congestion), Methadone (pain), Metoprolol (hypertension), Neurontin (neuropathy), Oxycodone (breakthrough pain), Plaquenil (RA and Sjogren's), Prednisone (RA), Prilosec (GERD),  Provigil (sleepiness), Reclast (osteoporosis), Robaxin (muscle spasms), Salagen (dry mouth), Vesi-Care (bladder problems), Vit. D (Vit D Deficiency).

Hydroxychloroquine Retinopathy, Glucocorticosteroid Induced Cataracts and Rheumatoid Arthritis

Hydroxychloroquine Retinopathy, Glucocorticosteroid Induced Cataracts and Rheumatoid Arthritis

Your eye is a complex and compact structure measuring about 1 inch (2.5 centimeters) in diameter. It receives millions of pieces of information about the outside world, which are quickly processed by your brain.

Today I had an eye appt  because  I needed to have a baseline exam done since I just recently started taking Plaquenil again. Turns out it was a good thing but not because of the Plaquenil. The problem with  Plaquenil is that it can cause retinopathy.  So when a patient starts taking it, they need to have an exam within 12 mo of beginning the med. Normally it needs to be done by an ophthalmologist. The doctor I went to is technically an optometrist but they have the proper training and equipment to do the needed testing. I noticed on their website that they do treat diabetic retinopathy, so obviously they know what they're doing. They do have an ophthalmologist that does come in weekly. I had called to set up my appt, told them the testing I needed and expected them to say I had to wait for the day the ophthalmologist was in. But it was explained to me that their optometrists were trained to do everything the ophthalmologist could do except eye surgery. In that case, I don't care either way who does the testing as long as they know what they're doing and are familiar with what I need to have checked and done. We set my appt for 3:45 and so I arranged for transport. I knew I was having my eyes dilated. That's part of the testing. They called me that morning to say the doctor I was scheduled to see had to go out of town and did I want to come in around 9:30am? I couldn't change my transportation so she asked if I minded seeing a different doctor. I told her I didn't mind as long as they knew what I needed. So I got there and got checked in. I don't think I waited even 10 min before they called me back.

The tech did a test of my peripheral vision and said I saw ALL of them!! Then we dilated my eyes. Wasn't as bad as I thought it would be from my memories as a kid. The doctor was a younger guy, mid to late 20s. Very nice. Asked about my nickname, but then when I said that I DO go by Wayney most places, his reply was "I am going to call you Mrs Porter" which is up to him but makes me feel old. I ought to tell him Mrs. Porter is my hubby's grandma! He did a few of the needed tests today as it was kinda late in the day, I go back next Thurs to finish up one or two exams. I have almost 20/20 vision but need reading glasses, which I already have in the strength he said I needed. There was only one small hitch in the appt. A teensy weeensy bit of news that's neither surprising nor good. I am farsighted and because of this barely there problem, he said it's as if my eyes have to work doubly hard to see as well as they do. The problem? I have the beginnings of a cataract in my right eye. Oh lovely. As I said, I'm not too surprised. Not much surprises me medically anymore I don't think. So it's something to just keep an eye on, no pun intended (my words not his). So aside from the knowledge that I'll more than likely be having cataract surgery in the future, it was a good check-up. I was honest with him about knowing what caused me to start getting a cataract at age 35, 20mg/day of pred for an extended period of time. Aside from burst and tapers, I hope I never get on that high of a dose again. But it was justifiable at the time. I don't blame Dr T at all as I knew full well the risks and just couldn't face how much pain I was in and how much stiffness I had without it and how the dose needed to be where it was to keep me comfortable.

Normal vision (left) becomes blurred as a cataract forms (right)
Image from Mayo Clinic

A cataract occurs when the lens of your eye becomes cloudy. Eventually, a cataract can advance to the degree of the one shown in this person's right eye
Image from Mayo Clinic

I did ask what his opinion on testing for Plaquenil induced retinopathy was and he said up to the 5 yr mark and especially if taking doses of more than 400mg/day, then the risk is higher than for those taking less than 400mg/day and on it less than 5yrs. I believe he said before the 5yr mark, the incidence of problems is about 1%. I think it is a tolerable risk as low as it is. And he did make sure to warn me about the long lasting affects of Plaqenil.

Plaquenil Toxicity

Normal Macula

 Macular images from

Alberta Retina Consultants

Some resources about Plaquenil (hydroxychloroquine) and retinopathy:

  

Screening for Hydroxychloroquine Retinopathy 08/2011  This is the American College of Rheumatology Position Statement 

Hydroxychloroquine (Plaquenil) is a commonly used medication in the management of various rheumatic diseases. Standard doses used by rheumatologists are 200mg to 400mg per day.  Although serious toxicity with hydroxychloroquine is very unusual, the most important is retinal toxicity. More than forty years of experience in monitoring retinal toxicity has documented that it is extremely rare. The American Academy of Ophthalmology (AAO) has reviewed the cumulative experience with hydroxychloroquine and has published updated recommendations for retinal toxicity monitoring summarized below. Ophthalmology 2011;118:415-422. The purpose of monitoring is to recognize early toxicity, not the prevention of toxicity. Once abnormalities are observed, toxicity has occurred and it may not be reversible. While there is a strong suggestion from the literature that toxicity is cumulative with adose greater than1000 grams and duration of treatment over 7 years, the majority of cases involved doses of more than  6.5 mg/kg/day and more than 5 years of use. Of more than one million patients using  hydroxychloroquine, fewer than 20 cases have been documented with doses less than 6.5  mg/kg/day, and all occurred after 5 years of use. The AAO is concerned that retinal toxicity, although rare, may be more common than previously recognized, based on a study by F. Wolfe et al which found risk exceeded 1% after 5 years.

Patients beginning hydroxychloroquine therapy should be informed of the possibility, although
extremely rare, of retinal toxicity and that periodic monitoring can limit the toxicity by early recognition. The AAO recommends that the following factors be taken into consideration when  assessing increased risk for hydroxychloroquine toxicity: cumulative dose of 1000 g, treatment  for more than 7 years, obesity, significantliver or kidney disease or advanced age, and pre-existing retinal, macular disease or cataracts.

All individuals starting these drugs should have a complete baseline ophthalmologic examination  within the first year of treatment including examination of the retina through a dilated pupil and  testing of central visual field sensitivity by an automated threshold central visual field testing  (Humphrey 10-2 testing). Examination by Amsler grid is no longer recommended as it is deemed  too dependent on patient interpretation. If available, examination by an objective test such as multifocalelectroretinography (mfERG), spectral domain optical coherence tomography (SD-OCT), or fundus autofluorescence testing (FAF) is also recommended. If the patient is considered low risk and these examination results are normal, the AAO recommendation is that  no further special ophthalmologic testing for hydroxychloroquine toxicity is needed for the next 5 years. Some ophthalmologists may elect to screen more often based on the patient’s age and  other risk factors. For patients who are considered high risk, annual eye examination is  recommended without the initial 5 year delay. If any abnormality is detected by Humphrey 10-2  testing or retinal examination, follow up with the previously mentioned objective testing is  imperative. The sensitivity and specificity of each of these objective tests for  hydroxychloroquine toxicity is still being determined. 

If toxicity is suspected or documented, ideally the drug should be stopped. However, there are  situations when this is not an easy decision, e.g., if the impression of toxicity is early or tenuous,  or if the treatment has been very effective. Alternatives to hydroxychloroquine are potentially more toxic. The rheumatologist, ophthalmologist and patient can make a cooperative decision to  stop the drug or cautiously continue it with close monitoring, with the knowledge that some vision could be lost.

Appropriate standards for children and adolescents have not been sufficiently addressed in the  available literature. Retinal abnormalities or new interference with vision (including color vision)  can be an indication of toxicity and should be discussed with the consulting ophthalmologist on  an urgent basis. Useof hydroxychloroquine in children younger than 7 years of age may be
limited by difficulty in obtaining satisfactory evaluation of color vision in this age group. For this  reason, the pediatric age group should receive an annual examination, as a minimum standard of care, until definitive studies in children suggest increasing this monitoring interval.

Approved by the Board of Directors: 03/03, 05/06, 8/10 8/11 

Information on Plaquenil (hydroxychloroquine) toxicity:
Chloroquine/Hydroxychloroquine Toxicity - Very in depth article by Emedicine via Medscape

Hydroxychloroquine Retinopathy Still Alive and Well

Revised recommendations on screening for chloroquine and hydroxychloroquine retinopathy.

The image on the upper left shows light properly focused by a clear lens. The image on the lower right shows scattered and nonfocused light caused by a cataract.
Image from Mayo Clinic

 

Information on cataracts:

Cataracts - from MedicineNet

Cataracts: 3 Common Types, Plus Symptoms, Signs and Treatments

Cataracts, Facts About [NEI Health Information]

Cataracts - MayoClinic.com

Cataracts | Causes, Symptoms, Diagnosis, Treatment, and Prevention

 

  Cataract surgery

 

I had an appt today with a new NP. She specializes in rheumatology and that is her bigger concern right now than anything else. I got there a little early and had my paperwork all filled out. Thanks to Foxit PDF Editor I was able to type all my info after I downloaded the forms from the office's website. Much easier on my hands! When the nurse called me back, she kept telling me I needn't rush. But I wasn't rushing so much as I am conscious of the fact that I need to try to pick up my speed when I am on a flat surface with few obstacles. I tend to try to pick up the speed just because on that kind of surface, I CAN walk a bit faster. We weighed me and I let her know that my braces are 6lbs since I cannot take them off and stand up to be weighed. She took me into the exam room and asked if I could get up on the table. Yup. She stood close enough to grab me if I had a problem. She commented on the forms. Asked me who typed em up and when I said I did, she thanked me because so often, it's hard to read patient's writing. I said that is part of why I did it on the computer as well as how much writing hurts after awhile. She took my BP and it was a tad high. 130ish over 80something. She attributed it to me rushing. It was possibly that or the pain from this flare. She was REALLY nice. She did decide not to have me change to the gown for my exam, although it wouldn't have been a problem.

When the NP came in, she was really nice. Asked lots of questions, and in asking her questions she basically addressed all but one item on my list. The only thing we didn't go over was me wanting some Voltaren Gel. But I decided to wait because I know there had been shortages of it recently so I decided to see if that had changed before asking. Why waste her time and mine if there was a shortage still? She is concerned about lupus. She didn't say if her concern was RA plus lupus OR that I've been misdiagnosed all these years. I told her I'd been tested but always negative. Which means NOTHING really. Last I read, 5% of people with lupus were sero-negative. And I've read anywhere from 20-30% of people with RA are. I've only seen the 25% and 30% figures a few times; 20% is the common number of sero-negative people. She wants me on Plaquenil. And of course that requires the baseline eye exam for retinopathy. Of course she also did labs and a U/A. I hate trying to fill the cup given my hand issues. It's never easy. I got my blood drawn. The ladies in the lab at the internist's office were nice. I went in and they were trying to tie up things. And one of the ladies said she was ready to scream as she misplaced something she JUST had. The other one said not to scream since a pt was in the room. I told her go ahead. I've been around healthcare long enough to know sometimes you just need to scream. When the woman came over and asked where it's best to get my labs, I said it was her choice and offered both arms or the back of both hands. I told her some people have a lot of problems with my arms and the veins rolling a lot. And I have a lot of scar tissue from the 28 years of labs. So she decided to use the back of my right hand. The one who wanted to scream said they'd get it, they could get it from pretty much anywhere: arms, hands, feet, head. I laughed and said that I've had labs and IVs in all those but my head. I commented that I wouldn't watch her put the needle in but I wasn't gonna pass out or anything. I just found looking away lowers the pain. I found that out years ago. And then I mentioned that study I recently posted on the subject. She said they've told people that for years.

The NP will NOT start me on a biologic until my mouth is fixed, because it's a breeding ground for the germs that cause sepsis. I wasn't surprised. My teeth needed work before I went into the hospital and they worsened there. I am not wanting to risk sepsis at all. Been there, done that, got the scars to show. I wonder if I really need a biologic as it is. I am hesitant to use one because of my past with what happened because of Remicade. I wonder if using just an older DMARD, in my case Arava and now combining it with Plaquenil (I believe she said that was more for the Sjogren's but I'm not 100% sure) might be enough. I've had a number of flares in the last year, but a lot of it starts as a fibro flare that causes my muscles to be stiff and sore, plus the fatigue. That means I don't move as much which means my joints stiffen up more. So often that's what happens. It's rare to have a flare start with RA. I mentioned to her that it'd take a lot of Valium for me to be able to face the dentist and she said they'd put me out with all that needs done. Yay. I can handle that as long as I don't have to listen to the sounds of what they're doing. I hate my mouth being messed with. I also hate mouth pain. I can tolerate a good bit of pain without little complaint. My pain doc is amazed at my tolerance. But when it's mouth pain, I am not so good with that.

I also have to get x-rays and a DEXA scan. She's asked for hands and knees but not my feet since that would mean standing and that's kinda impossible for me! I got that appt scheduled for Wed. The eye doc is Thurs. and I go back to the NP next Mon. I absolutely do NOT think Gar needs to be taking off work that much in that short a time to drive me to the doc's. So I decided to use medical transport. I can certainly request the company he works for although it's not a guarantee I'll get it. I did tell them I HAD to have either a mini-van or a car as I cannot step into larger vans. Calling to schedule transportation was a hassle and a half. I see why clients get annoyed. Unfortunately many take it out on the drivers who have NOTHING to do with the company who schedules the transportation. The company that Medicaid has the contract with to do scheduling is one I don't think I've EVER heard anything good about. The people who had to deal with them at the nursing home ALL said it was a hassle. The people at the cab companies mentioned the hassle. Gar has had ONE complaint since he's been a medical driver and it was NOT a client complaint, it was the company that schedules transport and they complained over the mistake that occurred that left him at a dialysis center OVERNIGHT. The office manager/scheduler at the company he works for defended him, they pulled the GPS to prove he stayed within a few miles of the office. He did leave shortly after dropping the client off to grab a bite to eat, go to the restroom etc. And then later that evening he left for food and the restroom. So I knew before making the call that it wasn't going to be fun. And it wasn't. I had to repeat info 3-4 times. I can handle giving my info and then them reading it back to verify it, and she did that AFTER me having to repeat things multiple times. It was VERY annoying! Then since I had 2 appts. I figured she'd take my info for one, then take info for the second. OH NO! "I'm going to have to ask you to hang up and call again to schedule your other appt because of the high call volume we are experiencing today." They'd not have so much trouble if they didn't hire idiots who can't listen! I needless to say waited a bit to call back and I was SO hoping I got a different person. No such luck. I know they monitor calls or tape them and I know they have scripts at times, but I look at it this way, if the caller has addressed something, they are wasting the caller's time to repeat it multiple times! Even before requested the company Gar works for I said "I know you cannot guarantee this and it could be ANY company that this is assigned to but I'd like to request DiamondMed." She said "I'll put that in but I can't guarantee it." I was almost at the end of my rope with her because of having to repeat things so often and then her telling me what I had already said I knew. I finally said that I had already said I understood that and wasn't an idiot who needed told what I already acknowledged. Then I said I needed to add a stop at the pharmacy when I went home. She said she needed to know when they needed to pick me up at the doc's office. Now, how am I supposed to know when I will be done with a dr's appt? If I were going for an infusion or something that'd be different. Or even if it were a monthly appt like with Stacy where I could judge how long it would take. I have no clue. I told the woman I had no idea. My last appt was at 3:20pm and left there around 5ish. So I can't guess. I didn't wanna tell them a later time than I'd be and be stuck there waiting, especially after the office closes. But if I told them too early of a time, they'd come, wait a bit and then leave and who knows when I could get a pick up then. After I call they have an hour to get me. But, that doesn't mean they will wait very long on me if I am not done when I said I am done. And she told me that if I need to go to the pharmacy, I HAD to schedule a pick up time, they cannot do a will call. So I said forget the pharmacy. I'll figure that one out on my own then. Actually I will just hand Gar the script and he'll drop it off as he drives by of a morning and pick it up that evening when he drives back by. Or if he is in the area and has wait time then he'll pick it up and possibly run it to me. I was just trying to save him that trouble. I have GOT to find some time to go try my driving so I know if I can get my license or not.

I did get an idea of a good eye doc. It's an office that has both optometrists and an ophthalmologist. I checked out their site before calling them. One thing I noticed is they take care of diabetic retinopathy, which made me think they could do what I needed as the problem with Plaquenil is that it causes retinopathy. So I took the chance since they would work for me and called. When I explained what I needed, they said yes they could help me. And I didn't have to wait for the one day the ophthalmologist was there as their optometrists have the training to do everything the ophthalmologist does EXCEPT surgery. Ok, works for me. That seems to be a rare thing as most optometrists don't have the equipment or training to do the baseline exam. I did verify that I was ok starting the Plaquenil before my appt as it takes so long to really get in my system and it takes a bit of time to do the damage. Some sites I read say even up to a year after starting for doing a baseline. Just on my own, I'd say it'd not be good to wait a year. But it's not like it's instant either. I was surprised when I read the new ACR guidelines I posted the other day, they now say IF the first check is good and you don't have any symptoms, you can wait 5 yrs to do a follow-up exam. I was really surprised as it's always been every 6 mo if you have a more conservative doc or yearly if you have a less conservative doc. I'll find out how conservative mine is later on I guess.

Lab-wise, she ordered ANA with Reflex, C3 and C4, CBC with Diff, CCP Igg Abs, CMP, T4, TSH, and Vit. D (25-hydroxy). I know I looked some of these up but not all of them and it has been awhile. 

That was my appt. She was really nice. I liked her. When I checked my notes to see if we'd covered all that I wanted to, she had covered it all without me mentioning any of what was on there. I told her that and she said well she didn't have to ask most of her usual questions either because I provided such good notes with my pt info packet. I'd listed a number of things going back as far as I could recall. I included pics of my leg wound with the cellulitis. How it looked when we came home from MUSC and then what it looked like when it burst open and how it looked after they cleaned it up and then how it looked about a yr after it all happened. I wrote a short history of the hospitalization. A short list of each dx, when it happened and who dx'd me. I provided names, addresses and phone #s of prior docs. I even took the release and duplicated it for Dr T's office, Dr K's office, the hospital and the nursing home. I also signed the release to have them release info to Gar and my Mom if need be. I did forget to ask them to send the report to Stacy but I will add that to my list of things for next Mon. I'll also ask the eye doc his opinion on how often I should be re-tested.

Looks like things are falling into place now. I wish it hadn't taken so long. I honestly wish that the first doc I had at the nursing home hadn't retired. I LOVED Dr Wilson. He was so laid back. If I needed ANYTHING, all I had to do was go to one of the nurses I felt most comfortable with (and whose judgement I trusted) and tell them I'd like a med or needed a shot and if they thought it was a good idea, they told me and then made it happen; if they felt it was a bad idea, they told me and we either found an alternative or we tried what I wanted). When I complained about how my meds were scheduled, he told me to speak to the unit mgr and we could sit down and figure out a schedule that was better for me and he'd write the needed changes. His son is an internist as well but their office is in Conway and I didn't wanna have to make the trip up that often, although I don't mind going every 2 weeks for the ministry group. So I guess if I had to, I would have checked to see if he was taking patients. Although no one I know knew much about him. One thing would have been convenient, Dr L, who did my braces was right next door. I loved Dr L and his nurse Danni. Actually the whole staff, Miss Pat and Nancy. are both very nice. I made a comment on FB one day about the joint on my braces being stiff and squeaky and how I wished it was as easy to get MY joints to loosen up and stop popping as it is to get the brace joints to loosen and quit squeaking. She said I should make my appt to have Dr L look at em. I don't think it's enough for that as it happened while I was in the nursing home and Jim called Dr L and that was the fix. They're not squeaking as bad as they had been while it was winter and when it's rainy. Weird, the brace joints react kinda like my own do with the weather!

More devotions from Rest Ministries
Devotion: God Collects Your Every Tear Through the Pain

Devotion: Why Persevere Through Pain and Trials? Because God Perseveres with Us

Devotion: God’s Love Will Never Fail Us, No Matter Our Weaknesses

Devotion: A Poor Prognosis of Life With Illness, But a Blessed Assurance

 

Some very interesting, health related devotions from Rest Ministries.

Devotion: God Knows You and He Knows Your Suffering When No One Else Does

Dear Fear: A Letter To My Fears When Living with Chronic Illness

Devotion: Finding Daily Strength By Living Each Day of Illness in A ‘Manna Rhythm’

Is There Such a Thing as Being Too Nice?

Devotion: Who Defines When We Are Really Grown Up?http://restministries.com/2012/05/26/devotion-who-defines-when-we-are-really-grown-up/comment-page-1/#comment-4693

52 Ways to Encourage a Chronically Ill Friend

52 Ways to Encourage a Chronically Ill Friend 

The post linked to above is an excerpt from Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend by Lisa Copen. As described in the post, Beyond Casseroles is "a popular little book to help people understand the needs of the chronically ill–and then get into action." In reading the 52 ways listed, a few jump out at me.

"7. Ask, “Would you be willing to talk to a friend of mine who has recently been diagnosed with a chronic illness and offer her some encouragement?” It makes one feel good to know that her experience can offer someone else hope and that God still has a purpose for her life."

I cannot speak for others, but I know that I am almost ALWAYS willing to speak to someone newly diagnosed. Although some people feel that I am too openly honest about the disease issues that are far from encouraging, I am the type that no matter how discouraging something is, I'd rather know about it to be able to expect it, be prepared for it, and know how to fight it. Or possibly prevent it. Prevention is impossible if you do not know what to expect. The only thing I can think of that would have me saying no to speaking to someone is if we couldn't find a good time for us to be able to sit down and have a decent amount of time for a chat, and I mainly would prefer a scheduled time so that the person who is newly diagnosed has time to think of some questions they may have, and I have time to gather some information. I am not the type who likes to just rattle off a bunch of things, without the resources to back them up. If I say to someone "People with RA tend to have a shortened life expectancy" then I want to be able to show where that information comes from. And asking the person to think of some questions they may have, let them have time to think what may be bothering them, or what is concerning to them. At the very least it gets them thinking.

"15. Don’t make her feel guilty about things that she cannot do."

I cannot stress how important this is!  If you are continually making your friend feel guilty over not being able to do things, you're not a very good friend. Friends don't make friends feel guilty. It's likely your friend is already feeling guilty without any help from you. Anytime a person with chronic illness(es) has to say no to an activity because of their illness(es), there are so many things they feel. They feel saddened at missing out on something fun, they feel as if they've let their friend down, there is guilt with the decision especially if the person is also second-guessing themselves. They may feel that they could manage doing something if only they don't do something else and then that adds to the guilt.

"23. Ask her to do spontaneous things, like go to a concert in the park, or just for a picnic. She may be more likely to participate since she knows if it’s a good day or a bad day."

It is so much easier to decide to do things on a more spontaneous basis. And declining a spontaneous activity is less stressful at times if it is a bad day. 

"24. Don’t say, 'So, why aren’t you healed yet?' or 'I wonder what God is trying to teach you that you just aren’t learning!'"

I cannot even begin to explain how insulting the last half of this one is to hear. The first one is just one of those questions that would make me look at the person asking it and wonder if they were seriously asking me that. The second half I hope I'd respond graciously and kindly. But then again, I might just tell them how rude that is and how it basically is questioning my faith. I could write a whole post on the subject of people who feel if we just pray hard enough and have enough faith, God will heal us. The only issue I have with that, is most of those same people expect an immediate healing. And while I certainly believe that type of healing is fully possible, I honestly believe that God does not immediately heal everyone. Those who do not receive immediate healing aren't guilty of not having enough faith or not praying hard enough or with the "right" words. It may just not be God's plan to heal them right away for some reason. Most likely that reason is NOT so that they learn some sort of lesson that they have failed to learn. It is altogether possible that God's plan is NOT to heal them because He has a purpose for their chronic illness(es). It may have nothing to do with THEM except that at some point He will use their illness(es) to help another person. In the Bible, not everyone who prayed for healing received it. The example that comes to mind without even doing any looking is in 2 Cor. 12:7-10 (NKJV). Paul is being plagued with a thorn in the flesh.

7 And lest I should be exalted above measure by the abundance of the revelations, a thorn in the flesh was given to me, a messenger of Satan to buffet me, lest I be exalted above measure. 8 Concerning this thing I pleaded with the Lord three times that it might depart from me. 9 And He said to me, "My grace is sufficient for you, for My strength is made perfect in weakness." Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me. 10 Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ's sake. For when I am weak, then I am strong. 

In verse 9, God says no to removing the thorn in the flesh. His reason? So that Paul relies on the grace of God. God and His strength and grace are able to allow a person to do wonderfully mighty things in spite of, or sometimes because of, our chronic illness(es). Paul used his weakness to show how God can strengthen us when we have infirmities, needs, are being reproached, persecuted or are in distress. I will refrain from going into too much more detail here on Paul's ordeal and what various commentaries say. Some say it was a physical illness, others feel it was a demonic person or persons who were trying to bring division to the church and ruin Paul's witness.

Suffice it to say, others did not get immediate healing either. Yes, the miracles of Christ show numerous immediate or nearly immediate instances of healing, but Christ's use of miracles was to show his divine nature and how He: is the source of life; is master over distance; is master over time; is the bread of life; is master over nature; is the light of the world; has power over death; and is master over the animal world. Even the ability of His apostles to heal was given to them in order to prove that they were truly messengers of God. The ONLY place in the Bible where healing at a certain time is guaranteed to us is in Rev. 21:4 (NKJV), which says,

"And God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying. There shall be no more pain, for the former things have passed away."

The note for this verse in The MacArthur Study Bible by John MacArthur says,

"Since there will never be a tear in heaven, nothing will be sad, disappointing, deficient, or wrong."

Before I go too deeply into this issue, I will stop here. I will end with reiterating my feelings on this. I fully believe God could heal me, or anyone else with chronic illness(es) at any moment. But I also believe He has a greater purpose in not doing so at times. That purpose will be unique for each person. Just because God doesn't do something, it doesn't mean He can't or won't later on. There are three answers to prayer: Yes, No, and Wait. Many people tend to think if they do not immediately get the answer of yes, that they have received no answer. Well, last I checked, the words no and wait are still valid answers to a request.

"31. Don’t tell her about your brother’s niece’s cousin’s best friend who tried a cure for the same illness and. . . (you know the rest)."

This is one of those things that, to many who have chronic illness(es), implies that our doctors do not know what they are doing. While that is certainly true in all too many cases (why do you think they call it "practicing" medicine?), it is up to the one who has the illness(es) to decide when to seek new treatments. All too many chronic illnesses have NO cure. They may have excellent treatments that bring about remission, which is the the next best thing to a cure for many illnesses. But, even for illnesses where remission is possible, remission rates are not high, and even if remission occurs, the illness can return later on. Many times the supposed "cure" is actually something that can have absolutely no benefit to the body, and some are more poisonous than medications. But at least with the medications, there is generally a good record of proof that they have benefits that outweigh the risks. With many of the word of mouth, doctors don't want you to know about this, type of "cures", there is absolutely NO benefit that would outweigh the risks to using it.

"35. Don’t tease her and call her 'hop along' or 'slowpoke.' Comments you mean in fun can cut to the quick and destroy her spirit. Proverbs 18:14 says, 'A man’s spirit sustains him in sickness, but a crushed spirit who can bear?'"

Oh boy. Where do I begin here? This one is not quite as cut and dried as many of the others I am commenting on. For some people with chronic illness(es), teasing them in any way, shape or form is extremely hurtful. For others, laughing at their illness(es) or the things that they struggle with, or a number of other illness related issues, is a form of coping. And as a friend of a person who copes this way, it may very well be acceptable to tease her about things like that. It's been said many times that it is better to laugh than cry. And many people with chronic illness(es) find that to be true. Laughing about something also takes away the power of the negative thing to be mentally upsetting or to be a hang-up. I know I have laughed over many things that other people would be horrified to laugh at, but I am fully convinced it has helped me maintain my sanity. Or kept me from the brinks of a deep, dark, dank, defeating depression.

The first time I needed a wheelchair to go shopping in the mall, I was, like many people, not thrilled. I was not enjoying the thought that at the age of 24 I was being pushed through the mall in a wheelchair. At the time, I'd not really thought it all through, so it made me pretty unhappy. My husband, being the great guy he is, and also having the wicked, twisted, sick sense of humor that he has soon had me laughing. From the race car sounds as he pushed me through throngs of people Christmas shopping, to brake sounds when we began to stop and a number of other crazy things, he had me in a much better mood in no time. How could I not laugh at being 24, pushed through the mall hearing sounds typically reserved for a kid playing with their Matchbox cars? Then, when he was going into a store that was: a) way too crowded for me not to be hit, elbowed, stepped on, etc. and b) had problems with the store being somewhat inaccessible by wheelchairs when there were no crowds, he parked the wheelchair in one of the areas for seating within sight of the store he wanted to go into. An elderly lady was sitting on a bench nearby. As he parked me, he continued to be silly. Except he didn't think how it would sound if overheard. Which is one thing I love about his silliness, the opinions of strangers do not matter to him. As long as the recipient of his silliness does not get upset, he does not care about what strangers think of what he is saying. He parked me, gave me a quick kiss, and as he walked away gave me a "threat". He told me to wait right there for him. Being the me I am, I replied, "Or you'll do what?" I didn't even notice the elderly woman listening to be honest, I was trying too hard to sound like a smart aleck teen, being defiant and arguing with a parent. He got a funny grin and replied, "OR I will take you to the darkest corner of the mall and put on the brakes and leave you there!" As if I couldn't get up and walk behind him. As if he'd ever do anything mean to me. As if he could leave me sitting alone in a dark place of the mall. But he succeeded in his purpose, which was to distract me from how I felt about using a wheelchair for the first time.  After he left, I noticed the elderly woman giving me a strange look. I figured I'd better do damage control before she flagged down mall security and told them I was being abused and threatened. I smiled and explained to her why my hubby was making horrible sounding threats. I told her how it was the first time I'd had to use a wheelchair to get around and wasn't thrilled about it and how we use humor to get through rough situations and this was no different. I explained how much I appreciated that he gave me something to laugh about when I was dealing with something that wasn't easy.

6 or 7 years later, I actually got a script for my own wheelchair and it made a huge difference in my life. Good thing I got used to using it part time, because in 2008, I had a fall that left me in bed, a Geri-chair or a wheelchair until 2011. Now, I counsel people that if they need to use an aide of some type, be it cane, crutches. a walker, braces, splints, or a wheelchair to be able to have a better life, then they need to just suck it up and use it rather than not use it and end up hurting more or not doing things they would be able to do IF they'd only forget their pride for awhile and use the aide.

One other example of laughing in the face of horrible circumstances.  After a fall, I was extremely ill, unable to walk, stand, even feed myself. For months I was not "there" in a way that is not easy to explain. I was alert and oriented in some ways. I could speak to people in a normal and appropriate way. I made some decisions, although had my family not agreed with what I was deciding, I am sure the doctors would have followed what the family wished. But, because of other things I said, it was quite clear that I wasn't "there". I have virtually NO memory of what happened to me from mid-Jan. 2008 through March 2008. I would say that 75% of April is missing as well. Less of May is missing and then continually lowering amounts were missing. Doctors have no explanation for it. To me, during those months, I was asleep. I recall some VERY odd dreams I was having. Some of which combined reality with whatever world my mind was in. In one vivid dream, I was in Indiana, still ill. But I was at a small (under 5) bed home for people who were gravely ill. The home was the home of the man I call Dad, next door to my bestest friend's house. In my mind, my son and husband were there, staying at her house. I remember that they visited. But she didn't. And in my room in this home, was a whiteboard that had the name of the hospital, the date, and the names of my nurse and CNA on it. The hospital's name on that whiteboard? Grand Strand Regional Medical Center, which is a real hospital. Except it is NOT in Indiana; it is however in South Carolina, where I live. That explains why even though the distance from Dad's house to Mary's house is in walking distance, even for me, Mary never visited me. As I began recuperating, I noticed something that struck me as odd. My husband wasn't teasing me about anything, even the stupid things I  did or said. Then I realized neither was my son. That was odd. So I asked them what was up. They acted like I should have known that they couldn't pick on a desperately ill woman. Uh why? My son apparently took that to heart. Sometime later, they walked into my room to catch me,  with a large bag of potato chips up to my mouth, tapping the end of the bag in order to get all the crumbs from the bottom of the bag. Hey, I'd not been able to eat for months and I had finally been able to keep Doritos down? You can bet I wanted every tiny little crumb I could get into my mouth! As soon as they caught me, my son said the first thing that came to mind, which was, "Piggie!"  I slowly lowered the bag from my mouth, and very quietly and in a voice that sounded as if I were barely controlling anger I asked him what he said. But before I could take the joke any further, I could not keep a straight face. I ended up bursting into laughter. My son at first thought he was in trouble. And from then on, he had no issues teasing me when it was needed! So for some people, laughter is a great coping tool. Before you go teasing a friend though, find out what may be off limits. I will take teasing about some things from anyone.  But, other things, only people who know me well can get away with teasing me about certain subjects. My bestest friend, can definitely tease me about anything health related, especially since I know in teasing me, she's likely teasing herself as well.

"42. Accept that her chronic illness may not go away. If she’s accepting it, don’t tell her the illness is winning and she’s giving in to it."

I touched on this earlier, but will add a bit here. Not only do you need to accept that her illness isn't likely to go away, and need to support her acceptance of it, but not saying she is giving in to her chronic illness(es) is extremely important. Telling me that I am giving in to my illness(es), or that I am letting my illness(es) "win" is a quick way to upset me.  It cannot be said enough that acceptance is NOT giving in. Acceptance is simply acknowledging that the illness(es) is/are chronic, have a cycle of flare-ups and times of less activity, will more than likely require medication for the rest of her life, will require her to do and learn things she never once dreamed she'd have to learn, and will require her to become the manager of her health-care team, a position some doctors seem to resent because they expect patients to be little sheep that follow their every order without question. Well, that's not how it works best for the patient usually. Patients who play an active role in the healthcare decisions are likely to do better at managing their illness(es) based on what I've seen throughout the years of work I've been doing with online support groups. They're generally happier with their course of treatment, they're more satisfied with their doctors, and they feel more in control of their health issues.

"44. Ask her to share her testimony at an event."

If your friend has had a chronic illness for some time, they may likely have some experiences with some pretty surprising things. They may also be more open to sharing than someone newly diagnosed. I know for me, I tend to tell my story (or the shortest version of it I can tell in a short amount of time) because I cannot count how many times as I was in the nursing home and someone found out what I'd been through that they told me I should keep sharing it because it might help someone else going though a rough situation. From some of those people the suggestion was to write a book. I am still not 100% sure I am ready and able to go that far. But, I am entertaining the idea. In the meantime, I would freely share my testimony of how I was told I wouldn't likely walk again by my doctors. They also said I was not likely to live outside of a hospital or nursing home. I'd tell how the doctors prognosis for me did NOT defeat me as it might some people. I would share how I recall asking to be left alone for a bit, not to cry as everyone assumed, although I may have, I cannot fully remember. What I do remember is praying. Telling God that I knew if it was in His plan that I be in a wheelchair the rest of my life, that He could still use me, and maybe even better use me because of that wheelchair. I knew that what I did before getting so ill with multiple infections, cellulitis taking a large chunk out of my leg, losing the ability to walk, and so many other things, I could still do in a wheelchair. I remember being grateful I had made it as far as I did. And I remember little else. I do not even know when this happened to be honest. As I improved, so much happened because of my immune system being a mess. I eventually needed a feeding tube. Yet it came out. So they had to decide if it was worth continuing to do costly procedures on me, or if it was throwing away money on a patient who, in one doctor's eyes was "nothing but a terminal patient." Thankfully they decided to do the procedure. And I think that was a bit of a turning point. It was a long, up-hill much of the way battle. But, in a remarkably short time after finally feeling well enough to begin physical therapy (the hospital PT had predicted it would take me 2-3 years of daily, intensive PT in order to stand, let alone walk, IF it were possible. In the nursing home, I ended up not having PT until Jan. 2011. I went 3 days a week, for approximately an hour a day. On March 29, 2011, I stood for the first time in 3 years. I then increased my PT to 4 days a week, still for about an hour a day. On April 18, 2011, with my son behind me (he was on spring break and wanted to spend a day with me, especially wanting to see what I did in PT) I took the first steps I'd taken in 3 years.It was an unspeakably thrilling victory for me. I know that the staff members and other residents who were in the therapy dept at that time were all thrilled for me. Earlier that morning, we'd had a church service (we had them throughout the week at the nursing home) and my son had arrived shortly before it was over. When the service was ending, the pastor chose "Victory in Jesus" to close the service. I was kinda surprised my son knew the hymn. But it didn't really enter my mind much until the next day. I was leading my first devotion time on the Alzheimer's and dementia unit at the nursing home.  I don't even remember the topic I read about. I do recall that Debbie, who worked in activities on that unit and I had decided about half-way through we would break for a song. It was then that the words of the second verse of "Victory in Jesus" hit me.

I heard about His healing,
Of His cleansing pow'r revealing.
How He made the lame to walk again
And caused the blind to see;
And then I cried, "Dear Jesus,
Come and heal my broken spirit,"
And somehow Jesus came and bro't
To me the victory.

Those first three lines just hit me like  a ton of bricks. I realized that was in effect what had happened to me. I did what the doctors said was highly unlikely I'd ever do again, both in walking and in living outside of the hospital or nursing home. I am sure Debbie wondered why I had such an odd look on my face, if she noticed me. In effect, that's the second time I did what doctors said I would not do. In the first few yrs post diagnosis, my doctors told me I'd probably not walk after the age of 16, I'd not work, let alone work a full-time job, not marry and have children, be in a wheelchair by the age of 16 and be on medications the rest of my life. I began working at age 16, working as many hours as I was allowed to legally work at that age. I was not in a wheelchair even part-time until I was pregnant and had horrible ankle swelling and fatigue that was horrible, it was another 8 years before I was in a wheelchair full-time. And after 3 yrs of being in a w/c, I am back to walking part of the time.

Interestingly, in the hymnal we used at the nursing home, there was a verse with most every song if not every song.  The verse with "Victory in Jesus" was 1 Cor. 15:57 which says,

But thanks be to God, who gives us the victory through our Lord Jesus Christ.