Thursday, June 18, 2009


I just realized that I have never told my readers my story. The reason I am the Voiceless Wonder. It's a long boring tale, but one that should be shared, so grab a coffee and get comfy.

When I was a kid, I had (Adult-type Juvenile) Rheumatoid Arthritis. Which unlike the arthritis that people get from everyday wear and tear on the body (Osteoarthritis), RA is an auto-immune disease. Basically your immune system thinks your joints, organs and other tissues are evil and it tries to kill the evil. I've had it since I was 2. The doctors told me and my parents, that I'd go into remission in my early 20's and that would be it. No more disease. They also said in a way, I was lucky as it meant I'd also never have Osteoarthritis (OA) as an adult.

I suffered all through my childhood, missing a couple of years of school (had to be home schooled by a tutor during these absences), was on crutches for 1 year spurts 3 times, got sick a lot, and had other related muscle and tendon injuries. I wore many hand and leg splints and I spent 15 years going to physio and occupational therapy. Sure enough, when I was 20, I went into remission. The rheumatologist told me at that time, "Ok, you should be fine now. If you have a problem, just come back and see me." I was fine for a year. A year later, I couldn't walk for 6 months so I was on crutches again. But it took 12 months to get an app't with the RhDr and by the time I went back, I was fine, so nothing was done. After that, I decided to just treat any issues on my own. I was well equipped after 15 years of physio to take care of small flare ups myself. And really I'd only have a minor flare-up for about a month in the winter (usually my foot, knee or hip). The odd time I'd go to my GP if the pain was really bad and they'd tell me, "Oh it's just tendonitis. Your JRA is gone and you can't get it again. Just take this Naprosyn and rest and ice and you will be fine." So I still thought I was in remission and these odd flare-ups were just old injuries being aggravated.

Then, just after my 30th birthday in 2004, I started having lung issues. I lost my voice permanently and suddenly had severe multiple chemical and scent sensitivities (MCS). As lung disease runs in my family, I was tested for everything lung related and was told I had every thing from COPD, to acid reflux, to it was just all in my head. This was even though I had small masses in my lungs showing on CT's. I gave up going to Dr.'s and just lived my life, as debilitating as it was.

About a year ago, the lung issues were worsening and Renzo persuaded me to try once again. I went back to a respirologist (strangely enough, he was the one who told us Renzo's mom was going to die--that was a fun visit as you can imagine). The respirologist said he couldn't help me (wow big surprise). He adjusted my inhalers, and said to avoid all chemicals and scents (easier said than done). He did however, re-do the CT, but this time a high resolution one, just in case something was missed. When I returned for the test results, he said he had looked up my old hospital file and wanted to know why I never told him (or any other respirologist for that matter) that I had RA. I said, "Well I had the juvenile version and I went into remission at age 20 and was told I didn't have it any more. Besides, what does a joint disease have to do with lungs, voice and chemical sensitivities?" He said, "My dear, I don't think you are in remission. You need to see a rheumatologist". I thought he was crazy (as he never did explain his reasoning). But I went back to my family doctor and requested the rheumatology referral. Coincidently, around the same time, I tore the tendons that run from the elbows to the wrist in both arms so at the same time, I got a referral for physio. The waiting list for the rheumatologist was 12 months. I didn't really care as I didn't see what the big issue was. In the mean time I went to physio. I decided to go back to the one I saw for as a kid as I figured she knew me best and could treat the tendon tear a lot faster as a result. She too asked why I hadn't seen a rheumatologist in 15 years. I asked her why is everyone telling me to go? She said, "Because it explains everything. You need to go ASAP. You can't keep living like this!". Well, with a 12 month waiting list there wasn't much I could do but wait. And during the 12 month wait, I not only lost use of my elbows and wrists, but my shoulders were down to 60 degrees rotation, and both knees and hips were so bad that walking or sitting for long periods was difficult.

Finally this past March, I got to see the rheumatologist. When I arrived, I had to fill out a questionnaire and found I was circling everything on the list (including voice loss, skin issues, eye issues and chemical issues). But I still figured that this doctor, like all the others before him, would just say I'm fat and there is nothing wrong with me. Much to my surprise, he never mentioned my weight. He explained that once you have RA, you have it FOREVER. That RA also puts you at an increased for OA due to joint damage. He explained that RA not only attacks your joints, but it also attacks your organs, skin, and also can cause chemical sensitivities as the immune system is in overdrive. The arthritis in the name is really a misnomer. But they call it arthritis as, in most cases, the problem is mainly with the joints.

He sent me off for a bunch of blood work and X-rays of pretty much every bone and joint in my body. It took me a full day to get everything done. When I went back for the results a few weeks later, he said, "Well the good news is, this isn't all in your head. The bad news is you have RA that has been untreated for 15 years and there is a lot of permanent damage. Because of all the damage, you also now have osteoarthritis in your knees and hips". My blood levels were off the charts. The X-rays showed damage to just about all my joints. I will end up having both knee and hip replacements within in the next 10 years. The lung masses on that CT 5 years ago, were not benign tumors after all. They were damage from being attacked by RA. The voice loss is due to damage to my cricoarytenoid joint, a joint in the larynx (who knew your throat had joints too?!). I was in tears in the office. He said, "Don't worry, while we can't reverse the damage done, we can try to limit any future damage some." I said I wasn't crying because I was upset. I was crying because finally, after 5 years of being told it was all in my head, and worrying I would die before anyone figured out what was wrong with me; I finally have an answer. Yes, the answer isn't great but I wasn't crazy. I really did have something wrong with me. (You have no idea how great it feels just to KNOW.)

The treatments aren't fun. I'm on Tramadol 300-400 mg daily for pain; Naprelan (an NSAID) 1000 mg daily for the OA, and Methotrexate (MTX) 20 mg weekly, by injection, for the RA. The tramadol has left me with no appetite (I've lost 50 lb. so far and still losing); the Naprelan upsets my stomach so I also have to take Prevacid 30mg to protect my stomach lining. The MTX is the worst. I take it on Friday night, and I lose two complete days from the worst of the side effects. I basically sleep for 48 hours Sat-Sun. The rest of the week, I am exhausted to the point where I have to nap every 4 hours or so. I'm shedding a lot more hair than usual-- the other day I had to pick it out of Bazil's teeth! But I have TON of hair, so I'm not going bald or anything. We just have to sweep every day as my hair combined with the dog hair is crazy on hardwood floors. It has also killed my immune system so I have to be super careful around germs. I'm losing toe nails. My fingers nails haven't fallen off yet but they are starting to discolour and are soft so they will soon follow. I've also had cortisone injections, in both shoulders, knees and hips. (Holy OUCH--not pleasant experience!). I have RA related eye issues requiring that I apply lubricating drops or ointment 5-6 times a day; I also take 5mg of Folic Acid daily.

Even with all these nasty side effects, I'm actually getting better. My elbows and hands are much better. Yes, they are still sore and stiff but I no longer have to ask Renzo to cut my food for me. One shoulder is completely healed but the other one, after 2 months of being perfect from the cortisone, has started to stiffen up again. My knees and hips are still bad but that is the OA and not the RA. They will always be sore, until the damage gets bad enough to replace them. But the cortisone has made the pain manageable. My skin is starting to stop peeling off. (I had terrible psoriasis on my head and feet--also RA related.) My voice is not back BUT it's better. I am understandable now. It just sounds like I have a bad cold laryngitis, instead of sounding like an alien all the time. It will never come back for good. The chemical sensitivities will never go away, but MAYBE in time they won't be as severe. The lung damage is permanent but with the new drugs as well all the previous lung medications, it's stabilized. And just the fact that I now KNOW, makes a world of difference. I'm sorry that I wasn't given the correct info when I was a kid as the lung damage and voice loss could have been prevented. But it's no one's fault. Research 30 years ago, or even 15 years ago, isn't what it is today. They just know more now. I am learning more about this disease every day and am amazed at all the new knowledge and treatments there are out there.

I hope that by telling my story, I can save someone else from going though what I have in the last 5 years. If nothing else, I hope I have empowered others not to give up. Don't listen if you are told it's all in your head. Chances are it's not.

Image © Bob Crimi

6 Comments:

  1. macnic said...
    I'm so glad you shared your story. I hope that you continue to find that thing improve for your health.
    daina said...
    Thanks for your story. I was diagnosed with JRA when I was around 8 (but they had been testing me for everything from age 4). I too was told that there was a possibility of it going into complete remission when I was a little older. I went into remission, but only for a couple years, then it came back full force. It hasn't affected my voice, but I have lung nodules and others on most of my organs. I'm on alot of drugs, including MTX, remicade, prednisone, meloxicam. I was also recently diagnosed with Fibromyalgia and was put on meds for that, it never ends, but you seem very well informed! Stay that way!!
    Sadie K. said...
    For what it's worth, I had horrible side effects from methotrexate, and my rheumatologist switched me to Arava, which is a similar drug taken daily. Side effects GONE.

    I know everyone is different, but it may be worth looking into if MTX makes you feel like death.
    Polkaroo said...
    Sadie K.: Thanks for the tip! Since I have switched to the injectable MTX, the side effects are better. No more stomach pains from it other than the initial injection site burning and as long as I make sure I nap every 4-6 hours, I'm pretty good. No more losing 2 complete days anymore at least. Now if I could just stop the hair shedding, my husband would be thrilled. :-)
    doctor T said...
    Steph, I'm so glad someone finally listened to you and helped you, and I'm glad you are starting to feel better. ~treava
    Living It, Loving It said...
    Thanks for sharing your story. I cannot believe RA got to that point. I have RA and I was only diagnosed last year after nearly ten years of suffering and being told it was all in my head. Things will look up soon. Keep us updated.

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