February 21, 2013
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.
November 26, 2011
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!
October 11, 2011
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?
September 28, 2011
This video is really good! I found it on the Arthritis Foundation’s Facebook page.
I gave up playing the piano (I had taken lessons for nine years) 14 years ago when I was diagnosed with RA. This girl is amazing – maybe there’s hope I can play again too?
September 2, 2011
The New York Times article: Williams Says She Struggled with Fatigue for Years
Tennis star Venus Williams just recently withdrew from the US Open tournament announcing that she has Sjogren’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.
February 28, 2011
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.
July 21, 2010
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.
December 4, 2007
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.
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?