Infusion time again

November 29, 2011

I had my Remicade infusion yesterday and it went fine, as usual. And it was boring, as usual. There was a young girl in the “infusion bay” next to me who was watching TV and had Ru Paul’s reality drag show blaring. So annoying. There was a young guy in another bay blabbing really loudly too, which was also getting on my nerves. If I have to sit hooked up to an I.V. for three hours I’d prefer it to be quiet, but eh, what can you do? I had planned to read a lot more of my book but instead wasted a lot of time playing with my new iPhone. So addictive! That’s all I have to report, really. I’m glad the infusion is done until the next one in eight weeks. Then I’ll have to start fighting with my insurance company and deal with the stress of getting financial assistance for the year. My insurance “starts over” January 1st AKA turns to crap. I know I shouldn’t complain though because at least I have insurance. I can’t imagine what it must be like for people who have RA or other chronic illnesses who can’t afford insurance. It’s criminal, really. I end up paying a ton in out-of-pocket costs, but I’d be so far in debt if I didn’t have any insurance.

Ah, what else is new? I drove again tonight for a bit. Exciting! I also have not taken any pain medications today, although I might have to pop a Percocet before bed. Ok, I’m going to go watch a movie or something.

Vioxx settlement

November 27, 2011

I just read this article on BBC.com about the drug firm Merck & Co. agreeing to pay almost $1 billion to settle criminal and civil charges regarding the drug Vioxx – which was often prescribed for people with rheumatoid arthritis. I remember when Vioxx got pulled from the shelf but I had never taken the drug myself. I did take Celebrex for a while which also has major health risk warnings related to heart attack and stroke (like Vioxx), but it never really did anything for me so I stopped it. Has anybody else had any experiences with Vioxx? Or Celebrex? I’ve been really lucky over the years that I’ve never had any bad side effects from all of the different medications I’ve taken. *Knock on wood* that continues! It’s scary to think about, but a lot of these drugs for RA are very powerful and can be quite dangerous. However it can also be dangerous to not take the medications, which is frustrating.

Check out the article – “Merck & Co. agrees $1bn Vioxx settlement in US”

New haircut, new ankle?

November 26, 2011

The new 'do

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!

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Post-op

November 1, 2011

My surgery went well yesterday and I’m feeling pretty good recovering today. In addition to the general anesthesia I was given, the anesthesiologist also gave me a localized nerve block for my right ankle/foot, which meant it was basically paralyzed for 24 hours. So, needless to say, I didn’t feel much pain at all yesterday after the surgery. This morning I could wiggle my toes again and the feeling in my foot is starting to creep back. My ankle is starting to hurt now, too. I’m drugged up on some percocet and vistaril, which is pretty nice, I must say. However I’m already bored just lying around on the couch with my foot up. Trying to walk at all is a huge challenge – especially with cumbersome crutches I can’t really seem to get the hang of. I will also have to wear this attractive giant black boot for at least two weeks, depending on how fast my ankle heals. This means I can’t drive until I can wear a normal shoe again. Hopefully I can bribe friends to pick me up and help me escape from the house during the next few weeks.

Good news – after I came out of surgery my doctor/surgeon went to speak with my parents about the operation. He said that the scope showed that my ankle joint is not damaged, so this is really great. He also said he removed scar tissue and damaged/inflamed tissue that was from the RA. I wish I had been able to talk to him myself, like last time, but maybe he figured I was too out of it from the anesthesia. I might call the doctor’s office tomorrow or something to see if I can speak with him.

So that’s the surgery news. I’m glad it’s over. And I really hope it works this time and that removing all of that inflamed crap will cut down on my pain, swelling and immobility. I just want to have a normal ankle again.

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?

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Margo’s Story

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?

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.

Frustration

August 31, 2011

My ankles are worse again – puffy, swollen, painful. They had gotten a lot better recently and now they’re back to how they were before. I was so happy because I (wrongly) thought they were going to stay better.

Will my life ever stop being such a roller-coaster?

Swollen

August 22, 2011

Both of my ankles are extremely swollen and I’m sitting here with a bag of frozen corn on the left ankle and an ice pack on the right one. The right ankle is especially huge, and I’m trying to not freak out. They’ve never been like this before, so it is worrying. And of course I made the stupid mistake of trying to find some information online. After typing “What causes swollen ankles?” into Google, I was immediately bombarded with a million posts warning of heart attacks, strokes, blood clots, lupus, kidney failure, etc. etc. So now of course I think I’m suffering from all of those afflictions (at once) and that I’m probably dying. Umm, anyway. I guess I will give this a couple days before going into any sort of panic mode. But once again I’m faced with the frustration of something going wrong with my body and not knowing if it’s from the RA or something else. I’ve learned how to deal with the “devil(s) I know,” but find myself feeling incredibly anxious and scared when something new and strange pops up. I really hate my body sometimes and all of the unnecessary worrying and pain it causes.

Well, on that note, my corn is thawing so I better dig in the freezer for some peas. I really hope this goes away soon.

Arthritis and art

August 15, 2011

Several months ago I was interviewed by a Stanford University student for a project she was working on involving art and biology. More specifically, she decided to focus on rheumatoid arthritis as an example of an auto-immune disease. The student, Catherine, had randomly found my blog and emailed me asking if I’d like to participate. She described the project a bit over email, which sounded really interesting, so I said sure, give me a call. It was maybe a week later that we spoke on the phone and I became quite impressed with Catherine and her ideas after hearing more about the project. She explained it better than I can, but basically she said that she planned to interview several people with RA and then in a series of drawings (of cells, body systems, etc.) she would use their exact words to form the images she would illustrate. As we spoke, I became very excited and inspired hearing her tell me about her studies and what she was doing. The biology and science of RA is something that I’ve been forced to learn about, you could say, and it is a constant presence in my life. I have also always loved art and seeing new ways one can express him or herself through it. Catherine asked me a lot of questions about my history of having the disease and about my life in general. She wanted to know what it feels like having RA and what my fears, hopes, and joys are (if any). We chatted for about two hours with her also tape recording me. She was a very lovely, sweet person to talk to and I feel grateful to be a part of her work at Stanford. But anyway – last week she emailed me a video clip of her presenting her project. She’s also supposed to email me scans of the actual artwork sometime in the near future, which I will post when I get them. So here’s the video clip. Arthritis and art, crazy huh?

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