I’ve been holding off on posting about this on here because, well, I didn’t know what was going to happen. And maybe I still shouldn’t write anything. But…who cares, I guess. So, almost TWO YEARS AGO I was terminated from a temp job because of something related to my RA. Since then I filed a charge of discrimination with the Minnesota Department of Human Rights – which was a long, tedious, annoying ordeal. Just a few days ago I got my answer – my charge was dismissed because there is “No Probable Cause” of discrimination. I’m very angry and frustrated by their decision, however I’ve been told by a couple of attorney friends that it’s not surprising (they probably didn’t do a very thorough investigation – short on staff, short on funds?). Now I only have about a week to appeal this decision and I don’t know what to do. Is it worth it to appeal it? To go to court? I’m beyond broke right now and I can’t afford to hire an attorney. But what this company did to me is so completely WRONG. It infuriates me to think of them being able to get away with it.
This has been a difficult winter so far. I’ve been sick since Christmas, basically, with either bad RA flares or this upper respiratory thing that keeps coming back. I feel really whiny lately, which I hate, but I do hope some good things will start to happen here soon. I’m ready.
Sorry I’ve taken so long to post again. I’ve been busy, ah, lying around being bored and feeling pathetic, I guess. Actually it’s been almost four weeks since the surgery and my ankle does feel better, which is wonderful. I drove for the first time today which was very exciting (it really was). I only drove a short distance though so I’m not sure how far I can go without it hurting too much. I don’t want to aggravate it and set myself back, of course. I’m dying to get out of the house though!
A lot of things have been happening regarding my RA, and well, with everything really. I’m having surgery on my right ankle again on October 31st (I hope my surgeon doesn’t play any “tricks” on me in the operating room). It’s the same surgery I had five years ago – the doctor is going to scope my ankle to try to see what’s going on in there. Like last time, I have a feeling that he’ll also end up removing inflamed synovial tissue. The frustrating thing about my ankles, the right one in particular, is that nothing ever shows up on the MRIs and X-ray scans yet I continue to have debilitating pain and swelling. As the surgery date gets closer, I’m starting to get more nervous and scared, but I just hope the surgery is more of a success than it was last time. I had my pre-op physical yesterday and I’m good to go. Whoohoo! Happy Halloween, eh?
Tennis star Venus Williams just recently withdrew from the US Open tournament announcing that she hasSjogren’s Syndrome, which is an arthritis-related auto-immune disease. I heard the news on the radio when I was driving home from work last night and I immediately felt surprised and really sad. If she has been having any joint pain and fatigue similar to RA, I can’t imagine how she can continue to play tennis. Hopefully she will get on a good treatment regimen right away and that she won’t have to give it up.
In 2004 I was diagnosed with Sjögren’s myself after waking up one morning with extremely dry and inflamed eyes. It was horrible and probably the worst pain I have ever experienced in my life. My vision became blurred and I felt like I had shards of glass cutting into my eyes. The only relief I got was when I was asleep; my time awake was torture. After waiting a month to see a dry eye specialist (I fault my former rheumatologist for this), I finally got in and had tests done to try to determine what was really going on. I was scared to death that the inflammation was attacking my tear glands and that my eyes would never be normal again. Luckily, my tear glands were fine and were producing enough tears. It was my tear quality that was bad resulting from inflammation of my eyelids, also known as blepharitis. After using steroid eye drops and other drops and tedious home remedies, my eyes finally returned to “normal” after about a year of dealing with this. I have little flare-ups from time to time but thankfully my eyes have never gone back to being as bad as they once were. However, I still can’t wear contact lenses (which makes me really mad and depressed because I hate glasses).
My heart really goes out to anybody who suffers from Sjögren’s Syndrome because I know how incredibly painful and frustrating it can be, emotionally as well as physically. I hope Venus will get the care and support that she needs having this chronic disease.
This Saturday is the annual Juvenile Arthritis March (JAM) which is held at the Mall of America in Bloomington. It’s a pretty big event with families walking together in order to raise money for the Arthritis Foundation. I took photos at JAM last year for the first time which was also the beginning of my volunteer work photographing other Arthritis Foundation events. I’m really looking forward to helping out again (despite needing to arrive there at 6:30 AM). It’s inspiring to see so many people coming together to work hard for such a personal cause. All of the kids (and adults) wearing blue T-shirts last year were people who had some form of arthritis. I was 18 years old when I was diagnosed with RA, which is very young, but it’s nothing compared to the courageous little kids who are forced to deal with this debilitating disease at such young ages. Suddenly having the intense physical and emotional pain of RA thrust upon me at age 18 was incredibly devastating, yet I’m very grateful I was able to have a normal pain-free childhood. Many of the kids who participate in JAM each year will most likely never be able to experience that. Finding a cure for arthritis is important for everyone who suffers from the disease – but especially for the little ones. No child should have to suffer from constant pain.
Rheumatoid arthritis is such an obnoxious, sneaky disease. Example: I went to bed perfectly fine last night (well, my normal “fine” that is). This morning I was cruelly awakened by a sharp stabbing pain shooting through my left knee whenever I moved it. My initial thought was, oh no…not this again. I had had this happen once before when I had to go to the E.R. because the pain was so intense. Luckily this morning I was able to carefully roll out of bed without passing out from pain. I hobbled into the living room and noticed that my left knee was swollen compared to my right one. So now, here I sit writing this blog with a bag of frozen peas icing my knee while I wait for my rheumatologist’s assistant to call me back about a plan of action. I’m pretty certain that the doctor will order me to go back on prednisone. Hopefully I won’t have to go into the clinic today. This flare-up is especially frustrating because today would be Day 3 of me being prednisone-FREE again. I so badly want to get off of that medication and STAY off of it. I’ve been tapering down/off for the last three weeks. If Dr. B puts me back on it, we’ll have to start the entire process over again. However, I’d rather take prednisone right away if it will knock out this flare-up. Anytime something like this happens, I get extremely nervous, of course, that damage is being done to my joint and that it will never return to normal.
Another depressing thing about this flare is that I’ve recently been enjoying riding my bike a lot. I’ve been trying desperately to lose weight by biking but have also come to really love it and look forward to my daily rides. I’m assuming that there will be no bike rides for a while thanks to this knee.
RA is really a jerk sometimes. It obviously doesn’t care that I have two medical appointments I need to go to today. Nor does it care that I also had to call in sick to work for tonight. I know life is full of surprises and interruptions for everyone, chronic disease or not. However I’ve noticed that my R.A. seems to get a kick out of rearing its ugly painful self in my life when it’s most inconvenient. It’s a very helpless feeling when a disease controls you, forces you to lie around with a bag of peas on your leg when you feel perfectly fine otherwise, and stops you from doing the things you love – like those wonderful summer bike rides.