04 April 2012
I write about my health because by sharing my experiences, maybe I can help others. Being diagnosed (dx'd) with juvenile rheumatoid arthritis (JRA) at the age of 7, my Mom insisted I be part of all of the decisions, discussions, etc because she felt that it was my body and my life that was affected and so I needed to be a full part of everything that affected me. My doctor, a pediatric rheumatologist at Riley Hospital for Children in Indianapolis, Indiana was Dr. Murray H. Passo, who is now head of pediatric rheumatology at Medical University of South Carolina (MUSC), went to medical school at Indiana University (IU) School of Medicine and earned his M.D. in 1974. He also steered me toward being knowledgeable about my health issues. He explained things (albeit not as fully as one might now since back then the secondary conditions such as OA and osteoporosis were not dx'd separately but all part of JRA) a bit more in depth than I've ever known a doctor to do so with a child. Both my Mom and my pediatric rheumy fostered my learning. I was applauded for going to the library reference section and reading medical texts. I remember at the age of 10 I was in a library reading a medical book, I believe it was aimed at nurses, when I first read that autoimmune diseases such as polymyositis (which my Mom was dx'd with in 1981) and JRA/RA can lead to death. It's not very likely, but it is possible. In many cases, it happens with people who do not respond to medications or in people who were misdiagnosed or went undiagnosed and those who were not properly treated for whatever reason. I know many people do not like hearing that JRA/RA can kill, but it's an unfortunate reality. And the way I look at it, forewarned is forearmed. Plus, if a 10 year old read it and understood that it meant her mother could die as could she and was able to handle it with absolutely no problems, then an adult needs to face the truth and take it for what it is meant to be-knowledge. And as I've always been told: Knowledge is power! Only when we know as much as we can about our opponent can we fight it in the best way possible.
I know as a child, I was seen by many of the students at Indiana University Medical School which is the medical school that Riley Hosp. is affiliated with. I know that between all of the things that Dr Passo taught me, and the things he was asking the students about, I got to where I could answer the questions he asked the students. And if they did not answer him, there were times that he looked to me to give the answer. I know some of the students thought that was odd, but they had to remember, that was my life, I lived with the disease they were learning about. Plus, you hear something repetitively enough and you'll likely remember it.
During my last few years of high school, I got involved with an online support group. I was looking for some information and found a source of support. Over the years, I learned a lot about how to find quality health information, which sites are trustworthy, which runs can be used for information but cautiously and with much double checking of the information with other sites. Even with the trustworthy sites, I like to verify their information with another site. I ended up being taken under the wing of the owner of the support group I had been on. Then life intervened and I was away from the online world for a few years.
The one thing I have done is used my experience as an example of how JRA should NOT be treated! I do NOT blame my childhood doctors for the lack of proper treatment. My JRA was atypical. I did not have a positive rheumatoid factor (RF), which is common in somewhere between 20% and 25% of all patients with rheumatoid arthritis. I am unsure what the percentages are for children or if that figure for RA includes patients with JRA as well. When I was diagnosed, my case was considered a mild case. In light of that, the treatment I was given was, at the time, new for children with JRA. I was in a study for ibuprofen shortly after my dx. Later on, I was in a study for naproxen sodium for use in children. Both of those are now common over the counter medications sold under the brand names of Advil and Aleve, respectively. Neither actually attack the disease itself and only treat the symptoms of swelling and pain. I have never had much swelling, and visible swelling was rare during my childhood. In the last 6 years or so, I've had more swelling than in the past. I did have a lot of pain as a child, but it was never the typical pain associated with JRA. I hurt more around my joints as well as in my joints. I had a lot of atypical pain that they were unsure what to think of. Looking back, I honestly think it was fibromyalgia, but that is something that at the time was considered a rare issue. Or doctors looked at it as a "catch-all" disease...one that they diagnosed when they had nothing else to use to name a person's (usually a woman's) symptoms. But, since my JRA was atypical, and mild, giving me an aggressive course of treatment was not high on the list of items considered. That is just what medical knowledge at the time allowed for. I blame no one for my lack of early aggressive treatment, a course that is much more commonly recommended today.
It was not until I was 25, after the birth of my son, that I was given either a DMARD or prednisone. For the first time in a long time, my joints were not hardly as stiff as they normally were. I may not have had much swelling but joint stiffness was a big problem for me. Unfortunately, I did not have the same success with methotrexate (MTX). It made me very fatigued, more than I was before taking the MTX. I had nausea as well with MTX.
My rheumy at the time officially diagnosed the osteoarthritis and osteoporosis as well as fibromyalgia. She informed me I'd likely need shoulder surgery within 10 years or so because of the joint damage. But then she also informed me that she did not see how I was in the pain I claimed to be in. I don't understand how she could tell me one visit that I had shoulder damage and then the next time that she didn't see how I was in the pain I "claimed" to be in. I was on the maximum dose of Ultram, and it was barely touching the pain. I have since found out that it just was not the correct pain medication for me. Some people react to one pain medication and not to others, and other people respond well to a different medication. Back then, I almost felt like it was MY fault that I didn't get relief from the meds. Not everyone responds to certain meds. I am 100% UNABLE to take selective serotonin reuptake inhibitors (SSRIs), They're a class of anti-depressant that is also commonly used in lower doses for treating fibromyalgia. For me, they're a horrible medication. I become nervous, jittery, anxious, angry almost. And since the dose I was on was taken at bedtime in order to take advantage of the sedating properties, I would wake up the next morning unable to open my mouth very far because I'd been clenching my jaw in the night. My jaw would take a good 20-30 minutes to loosen up and would be painful and stiff for a few hours.
During a psychiatric evaluation after I applied for disability, the psychiatrist doing the evaluation cautioned me against EVER taking SSRIs again. It was not just the jaw clenching. I also felt more depressed the whole time I was on SSRIs than I have EVER felt in my whole life. At one of my lowest points, I was in so much pain, and so depressed about it that I told my husband that I could understand why someone who did not have the things and people that I had in my life to live for would feel that suicide was the answer. I had too many people to live for. But I honestly could understand if someone was alone and feeling how I felt, that they could feel that was the answer. I also feel that because of my personal relationship with God I could not see suicide as an option, but that is my opinion. Others in the grips of depression and especially one with multiple diseases, who is also dealing with side effects of multiple medications, may feel that even their relationship with God is not enough and end up suicidal. I don't judge them for that, depression can do a number on people. Each person has a different level of what they can handle. One thing the psychiatrist told me was that in some people, the chemical reactions of a SSRI can cause them to be suicidal when otherwise they would not be. He cautioned me to NEVER take SSRIs again. And believe me, I am very adamant about that. I do NOT want to return to that place of being in so much pain that all I do is lay in bed and sleep 12-14 hours a day. In the end, part of why I had such a reaction during that time was I also was dealing with pregnancy hormones (and did not know it) as well as extensive "morning" sickness....that lasted all day and night.
This painful time all started during a chaotic time of my life. I'd received the tentative fibro dx in March 2001. In April, I flew to IL because my father was dying and then I dealt with his passing, and all of the arrangements for his funeral as well as the funeral. Then in May the fibro dx was confirmed. In June I received the life insurance from my father's insurance company. In July, I left my job because I just couldn't keep up with it and I was noticing my level of anxiety and anger even rising, as well as the fact I was having a lot of nausea, and pain in the area of just under my rib cage on my right side. In August we bought a house and moved. In September the country was rocked by 9/11 and I was getting worse health-wise as well as the good stress of having company and being on the run more often than usual. In October, the pain, fatigue, and stomach issues that had been occasional worsened. In November, I got to where I couldn't eat much of anything except Kraft Easy Mac. And in December, I got an answer as to why I was having nausea, vomiting, horrendous heartburn, no appetite all on top of the pain and fatigue I had.
Back in July, when all of these symptoms started. my rheumy sent me to a gastroenterologist. Both she and I were thinking that with the side pain and nausea, especially when I ate greasy foods, I had a problem with my gallbladder. My LFTs were a bit off which supported that thought. My older sister took me to my appt. because I was so tired, sick and just could not concentrate well enough to drive. That gastro just was not the right doctor for me. He addressed most of his comments to my sister. I know I looked younger than my age and having a sister old enough to be my mother (her oldest child is 5 months older than I am) with me at the appt likely didn't help the doctor to take me seriously. But, the few times he let me answer a question, he'd look to my sister to verify that was true. She didn't live with me and see me all the time so she couldn't tell him that. But he ended up doing an ultrasound and said that nothing of concern showed up. Fast forward to the beginning of December. I had a few days where I just didn't want food. Then I got to where I wasn't able to keep anything down...even water. My husband insisted on taking me to the ER. I resisted thinking it was all related to the issue with my gall bladder. In November I'd went to a different gastro and was just waiting on saving the money for my co-insurance on an endoscopy. Both Garrin (my hubby) and I really liked this gastro. He was very nice, took time to explain things...just a complete 180 from the previous gastro I'd seen back in July. Needless to say, my hubby won the slight argument over whether I was going to go to the ER, he felt so strongly about me going that he said if he had no other choice, he WOULD pick me up and carry me to the car and take me. Seeing that he felt that strongly, I agreed to go. Of course, ERs being the busy places they are, we were prepared for a long wait. What we were NOT prepared for was the news we'd get. After running labs, a urinalysis, and doing the exam and taking my history, we settled in to wait. This particular ER didn't have actual treatment rooms. The beds were separated by curtains. So privacy wasn't a big thing there I guess. I am not that picky about privacy but in the end, this would make for an odd conversation later in the night.
After much waiting, the doctor came in. Of course it was while Gar had stepped out. She told me that they'd found out why I'd been having ALL of the stomach problems. She the told me that it was because I was pregnant. I was stunned. I remember asking "What did you just say?" And she thought I didn't hear her I guess. I told her I'd heard her but just needed her to repeat it because I couldn't believe I was hearing that. Needless to say I was shocked. I am smart enough to know that no birth control method, short of having a hysterectomy, is 100% sure fire. But, I'd had such irregular cycles so combining that with use of birth control methods I was a bit shocked I could even get pregnant. I even had heavy enough spotting the first few months that I assumed it was my cycle...and then I began feeling even worse and my cycle stopped. That is nothing out of the ordinary for me. The whole time I was in the hospital from Jan 2009-Nov 2009, I only had a cycle when they insisted on me taking birth control pills because one of my medications causes serious birth defects. I didn't get the notion of me taking birth control pills when I was stuck in the hospital, barely able to be touched for daily care so how was I going to be having sex? It was nothing odd for me to not have a cycle when I was in a major flare. So in the summer of 2001, when I was in a huge flare, the fact my cycle stopped was nothing new. Basically every one of the pregnancy symptoms were explained by either the disease processes or medication side effects. Even the movement of the baby in the early stages felt like a muscle spasm to me. And given that I was puking my guts up regularly, I figured the muscles in my abdomen were irritated and I was having muscle spasms. It felt much like the muscle spasms in my legs. So as I processed this news, I asked the doctor to make sure NO ONE spoke to my husband as he walked through the ER! I wanted him to hear the news from me. Needless to say, he was as shocked as I was. As we discussed the fact I'd been on meds the whole time and what could happen, we heard a voice from the bed on the other side of the curtain telling us congratulations. It was a bit odd to hear. But it all worked out in the end. We had a very healthy son in February 2002. He's still very healthy, happy, energetic, smart, just an all around great kid!
As time has passed, I've found 2 wonderful doctors, one a pain doctor who is just excellent. He's also very involved in the running of his office and cares so much about his patients and their lives, not just their pain. I cannot thank him enough for all he does for me. I missed him a lot during the time I was in the hospital and nursing home. He had NO clue that I was there. He thought I'd moved from the area and not told him. The other doctor is also great. With both doctors, I am a PARTNER in my healthcare. We make decisions together, not unilaterally. In many cases, because I am a fairly well informed patient, I can be given options and make a decision immediately. If I need time to research something, my doctors are willing to let me take time to do so. All it then takes is either waiting until my next appt to tell them my decision. OR I can call them and let them know that way.
That leads to a bit of why I write about health matters. I don't blog as much as I should. But I do work with a support group where I have been known to research things for people when they can't do so for some reason. I also tend to (although I've not gotten back into it as I'd like since being home from the nursing home) post news articles that are on the varied topics of interest to the support group. I also have a desire to do more writing. I've been considering something that a number of people have told me. I've heard more than a few times in recent months that I should write a book about my experiences during the last 4 years. By sharing those experiences, I might be able to provide hope for someone who is going through a similar experience. And that is the whole point of why I write: to help others in a similar position, to give them information when I can, to give hope that no matter how bad it gets, there's always something that can be done, to bring awareness to the diseases I deal with so that the more informed people are, the better off they are. All of those are reasons why I write. Admittedly, I've been away from writing a lot for a few years, but even in that time, I did come up with some ideas for things I'd like to write,
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