February 22, 2008
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).
November 24, 2007
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.
I’ve been 20-25 lbs overweight for the last 5-6 years, mostly due to medication side effects and lack of exercise (my suspicion). Feeling fat and ugly and sluggish and like a disgusting old lump on the couch only adds to the frustration and depression of having R.A. But this is a topic that deserves its own post(s), so you’ll have to wait to read about that another time.
Let’s get back to me looking ridiculous pumping iron in my pajamas in front of the TV every night. So yes, hooray! I can lift these weights and shave off some of my fat arse in the process. Good plan, right? WRONG. After about a week of weight lifting I am having an arthritis flare-up in my left shoulder, both elbows, and both wrists. At first I hoped it was only muscle soreness, but now I fear my gut instinct is true and it’s the arthritis (it’s not going away – always a good indicator). I’m off my exercise plan and today I reluctantly started taking 10 mg of prednisone to try to get this flare-up under control.
The presecription: prednisone daily, rest, rest, rest, and wait. Don’t move the shoulder unnecessarily. Don’t move the arms, in particular the elbows, excessively or in a weird manner. Wrists? Well, might as well try to not move the hands either (hands are connected to wrists, in case you forgot – I do sometimes).
What’s the next exercise plan that won’t land me in an iron body cast? Swimming/water therapy could be it. The warm water pool at the Courage Center feels like heaven; it just may be a fair enough trade-off for having to appear in a swimsuit in public. Hmm.
It really is a shame I can’t continue with these weights, though. Anybody have any other ideas?
November 20, 2007
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 getting my shit together if I were healthy and arthritis-free. Is the RA to blame for any of these frustrations and failures or is it all me?
November 17, 2007
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.
November 16, 2007
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.
November 7, 2007
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.
After 2.5 years of living with the agony and worry of inflamed and intensely painful ankles, I felt such relief when I found the orthopedic ankle surgeon who performed my surgery. I thought that finally this hell would end and I would be on my way to healing and recovery. However, now a year later, it seems this is not the case.
My ankles (both are painful and inflamed) are a bit better and the right one is a little better, but nowhere close to being normal and pain-free. I recently got the name and number of an orthopedic doctor from my rheumatologist, however I have seen this orthopedic doctor once before and he referred me to my ankle surgeon. My rheumatologist suggested that I see him again, now post-surgery, and see what he says and that maybe something else can be done. I’ve been meaning to call and set up an appointment for two weeks but I either keep forgetting or maybe it’s just subconscious hesitation.
Over the last two years of this mystery-ankle-nightmare, I’ve seen so many different doctors, specialists, orthopedic doctors, podiatrists, physical therapists, etc. How can this “problem” be so difficult to correctly diagnose and treat? My ultimate fear is that it is indeed arthritis-related and the pain and inflammation and disability will be permanent (which means not being able to walk or function like a normal person ever again).
I know I can’t give up yet I can’t even begin to express how exhausted and tired I am with trying with this. Life has turned into a giant schedule of doctor’s appointments with conflicting, confusing answers or no answers at all. Do I want to get back into this “game” of musical doctors again? I’ve been in pain yet limping along fairly well since returning from France in May, trying to occupy my mind and time with other distractions. I know the situation can’t stay like this though. So yes, I will give the doctor a call and set up an appointment, although I fear that once again I will only get no answers or the wrong ones.
On a positive note, I seem to be tolerating the Orencia pretty well. I haven’t had any serious side effects or any side effects at all, it seems. My immune system is quite weak and frankly is pretty shitty lately – hence my weird sinus sickness and now nasty cold. Let’s hope the Orencia kicks in soon and kicks the inflammation right out of my poor little ankles. That’s right, I said “poor little ankles.” They used to be little, anyway.
So yes, today is my birthday. Each year I find birthdays to be more depressing and weird than the previous ones. Maybe that’s normal? I don’t know. Tonight my family will go out for dinner to celebrate not only my birthday but my dad’s as well (his birthday is today too). It will be nice to go out together and it will be a relief to not have the fear of surgery looming ahead. The best birthday gift would be to have normal, healthy ankles again, but I don’t think I’ll get that, unless some miracle happens. However, friendship, love, support and understanding from the people in my life would be a close 2nd, I’d say. Or maybe even better than good ankles.