Inflamed: Living with Rheumatoid Arthritis

Wow, I haven’t posted in months.  Where did those months go?  Well, it’s a long story - I became very sick in the beginning of March with a couple of different issues going on.  It’s been such a nightmare and I basically haven’t had the energy to do anything until just recently.  However, I’ll save the whole sickness business for another post.  I don’t feel up to writing about that right now.

In better news, I recently bought a good used bike with the hope of using it to finally begin exercising again. It’s pretty comfortable, considering the pain and limitations I have with my wrists, ankles, and sometimes hips.  I could write an entire post on the headache it is just trying to find a bike that works and is the least painful for this decrepit body.  Admittedly, I really do envy people who can just purchase things like this (and shoes, for another matter) without having it turn into a huge ordeal.  Yeah, don’t get me going on shoes either.  I can’t find any tennis shoes that fit and don’t hurt my feet.  My former marathon coach is supposed to be helping me find some New Balance ones, but I think he’s forgotten about it.  I should bug him again, I suppose.

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Once again time flew by and I haven’t written in here for a while.  Apologies again to my maybe two readers (ha ha).

For the past month+ I’ve been trying very hard to improve my health and lose weight.  I began an aquatic whole-body conditioning class that meets twice a week (I wrote about this once before but deleted my post in embarrassment because my instructor found this blog and told me about it at class one week. I’ll probably repost it sometime soon once I stop acting like a baby).  I also started this “Colorful Choices” program through work that helps a person eat more fruits and vegetables, as well as giving up all soda and drinking a lot of water.  I’ve been doing pretty well with these things, yet I’m growing more and more frustrated because I’m not seeing ANY results - not pounds-wise or in clothing fit.  What is the DEAL?  Do I have to run miles each day and starve myself to lose even a tiny bit of weight?  I’m so unbelievably sick of this weird weight gain (from the last 5 years) that never goes away despite my efforts.  I just want to be my “normal” self, 25-30 lbs lighter, which isn’t even “skinny.”  I’m working hard yet the flab is hanging around (literally).

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I went to an orthopedic ankle doctor/surgeon at the University of Minnesota today whom I have seen once before (1.5 years ago for the same problem). He actually referred me to the doctor who performed my ankle surgery a year ago. My appointment was at the Riverside Orthopedic Clinic and I have to say the place was hectic and an unorganized mess. Despite that I had called them multiple times before my scheduled appointment to make sure that they had received my records, there were no records to be found today. More than one woman who works there assured me the records had been faxed and received (note to self: next time write down the woman’s name who says such things). So, despite having to wait extra long because the doctor was running behind, I had to wait an additional amount of time while the nurse got my records re-faxed over to the clinic. What is the point of me even calling to assure that my IMPORTANT records and information are there in time for my appointment if I’m not being told the truth anyway and they are NOT THERE? Frustrating.

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Weights or air guitar?
In a brief effort to improve my health and lose weight a week or so ago, I decided to try lifting these little 3 lb orange weights a few times a day, every day. At first I was huffing and puffing and “feeling the burn” at the end of each mini “workout,” but also feeling good and energized and happy that I had exercised a bit. I really hoped that this would help me lose some weight, too.

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It’s nearly 1.30 AM right now and for the last 2.5 hours I’ve been glued to the computer, glassy-eyed and claustrophobic, trying to work on grad school applications (deadlines are coming up way too fast). I really do want to go back to school; I’ve wanted to go back for three years or so but haven’t been able to “get my act together” to actually do it. I applied to two programs at the University of Minnesota two years ago, in a huge messy rush, and got rejected. I also applied twice to a Master’s program in Berlin at Humboldt University; the most recent rejection happened just this May. Throw in an application for a Rotary Ambassadorial Scholarship too, also denied. I did get accepted to a Master’s program at Queen’s University in Belfast in 2004, but I had to decline it because of a freak arthritis flare-up with my eyes.

Oh, pity pity woe is me, right? I know, stop being a baby. But as I sit here feeling like someone is digging sharp knives into both ankles and that maybe another evil person just finished smashing every inch of my body with a lead baseball bat - I do wonder sometimes if I would be having such trouble trying to move on with my life and “get my shit together” if I were healthy and arthritis-free. Is the R.A. to blame for any of these frustrations and failures or is it all me?

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My ankles are worse and have been flaring up these past couple of days. Why? Who knows. My right wrist seems to be experiencing a little flare-up, too. Earlier I was planning to go to a concert tonight, but I’m glad I decided to stay home and take it easy. My entire right leg is throbbing and aching so much because of my ankle. It’s amazing how every inch of our bodies work together, and if one thing is out of sync, it throws everything else off too. I don’t normally like taking any kind of pain medication, because it makes me feel weird, dizzy and like puking (I prefer to reserve these sensations for classy nights out at the bar) but tonight I had to pester the on-call doctor to call in a new prescription for Tylenol 3. I’m minutes away from popping one of those, slapping the ice pack on my ankle again, and then curling up in bed and hopefully being able to relax enough to sleep. This little ankle “charade” is really starting to get on my nerves. It can quit anytime now, honestly. Although sometimes I don’t mind being “forced” to lounge around in my extremely attractive (uhh) sweats while reading books and being lazy on a Friday night.

I called my case analyst this afternoon at the Minnesota Board of Medical Practice regarding the medical complaint against my former rheumatologists. Bad news - the case was closed because the board thought there wasn’t enough evidence to justify disciplinary action. This is very disappointing, yet I’m not really surprised. Doctors are so well-protected and even untouchable, it seems. The arrogance, apathy, negligence, and complete disrespect of my doctors put me through months, years even, of hell. In a just world something should have been done to try to remedy this situation. But no. They get off without so much as a slap on the wrist and are free to treat other patients like dirt. Below is the full and actual complaint I submitted as a result of the most recent mistreatment by my doctors. Thanks to them, I was basically left stranded in France last winter unable to get crucial medication and medical help while abroad.

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I can’t believe another year is gone and it’s already my birthday again. Crazy! It’s also crazy to think that a year ago today I had a synovectomy on my right ankle (what a nice birthday present, eh?). The surgery was not a great success and my ankle (both actually) is still in a lot of pain and I’m very limited in how much and how long I can stand and walk.

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This is my new rheumatoid arthritis blog. Arthritis, hooray! Doesn’t that sound exciting? Don’t worry, I won’t only be writing about my orthopedic shoes and how I have trouble getting out of the bathtub. Oh no, there’s so much more.