February 13, 2012
Monday morning. I’m still trying to taper down on the prednisone – at 10 mg now. My ankles feel a little better, surprisingly. I hope this isn’t just a fluke. Too many pills; no wonder I always feel like throwing up in the morning. I suppose I should try to spread out taking them but then I’d probably forget. I’ve started taking plaquenil again too. I had kind of “decided” on my own to stop taking it. Well, it was mostly laziness and forgetfulness that decided for me. I’m determined to get these ankles better so I can take a trip in June. If that means choking down all of these pills then I’ll do it.
February 4, 2012
A lot has been going on lately with my RA and I really haven’t wanted to talk or write about it. But, I suppose I should give some sort of an update. I’m still on the evil prednisone, but I’m starting to taper down as of today. I saw my rheumatologist last week and he increased the dose to 20 mg (I think I was on 10 for a week or so) for a week and then told me to call him, which I did yesterday. My flare-up has definitely improved since starting the prednisone again but I’m still having pain in both ankles. After speaking with my doctor’s nurse yesterday afternoon, she relayed the message that I’m supposed to start tapering down to 15 mg for four days, then 10 mg for four days, then call the office again. She said that since I haven’t seen a lot of improvement increasing to 20 mg that I should start to taper down. That’s certainly fine with me – I hate being on the stuff. However I’m willing to put up with prednisone’s nasty side effects or just about anything else to make the flare-up and pain go away. My Remicade I.V. infusion was also last Friday so hopefully that will start to kick in.
January 18, 2012
Wow I haven’t posted in nearly two months – sorry for that! Things have been crazy and busy and…challenging. I’m still recovering from my ankle surgery in October and I’ve actually been suffering through a pretty bad flare-up for the last 2-3 weeks. BOTH ankles have been really painful making it difficult to walk or be on my feet much. My hands and wrists have also been bothering me during this time, so I’m fairly confident it’s the RA flaring up and not something else. But who knows. My next Remicade infusion is Jan. 27th so hopefully that will help get rid of it. I also finally managed to speak with my rheumatologist’s nurse today and she told me that my doctor wants me to go on prednisone again for the next couple weeks until I see him on Jan. 26th. Great, PREDNISONE. I’ve been trying so hard to stay off this drug; I haven’t taken it since August. Before that I was able to be off of it for an entire year before a bad flare-up forced me to go back on it again. The thought of taking it now is very depressing and makes me feel anxious and kind of sick inside. But what can I do? The pain and swelling in my ankles is driving me crazy – it can’t go on like this.
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.
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”
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?
August 26, 2011
I’m so glad it’s Friday! This has been a long, stressful week. In bad news, my ankles and feet are still in rough shape and are very swollen and painful. I wound up going to the ER Tuesday night because I was kind of freaking out and didn’t want to wait for a doctor appointment. Thankfully all of the blood/urine tests came back normal. The doctor told me that she thinks I just have a random case of edema and she prescribed a diuretic for me to take for a week (Lasix). Today is Day 2 of taking the water pill and I don’t notice anything different. I also don’t feel like I’m having to go to the bathroom more often. So now I’m afraid that the swelling is from the RA. My rheumatologist’s nurse is supposed to be calling me back today about this. When I talked to her a few hours ago and explained what was going on, she didn’t seem to think that my swollen feet/ankles are from the RA. But who knows, right? Most of the time with this disease I can never get a certain answer or diagnosis which DRIVES ME CRAZY. It’s so maddening. I really hope this swelling problem gets sorted soon because I feel like I’m really on the verge of not being able to handle it. What that means, exactly, I don’t know – but I’m close to it.
In good news, my new glasses came in a couple days ago (which I am sporting in the above photo). They’re different than my old frames and a bit bigger, but I think I really like them. Change is hard for me sometimes – arthritis flare-ups, new illnesses, new jobs, new glasses. Stress! I keep trying to tell myself that change can be good. I probably look even more like a librarian in these specs, but that’s fine with me. Librarians are pretty awesome.
Ok, I better get back to “work.” Happy weekend!
July 6, 2011
Today was a really beautiful, perfect summer day. However what I had to do this afternoon did not bring me carefree summery happiness. This afternoon I went to CDI to get another steroid injection in my right ankle’s subtalar joint. At this point I can’t even remember how many injections I’ve had in this poor battered ankle. Four years ago I had synovectomy surgery on it which barely helped. I keep joking to various friends that I should nominate myself to be on that show “Mystery Diagnosis.” After six years of “mystery” pain and swelling in both ankles and countless trips to various doctors and foot/ankle specialists (even a trip to the Mayo Clinic in Rochester which yielded zero results other than a motel bill), I feel ready to give up. But I don’t want to give up. I want to be able to walk and just stand on my own two feet like a normal healthy person. The good/bad news is that MRI scans continue to not show any damage or active inflammation. That’s great, but why does my ankle hurt so much? Just looking at it you can see very obvious swelling.
So last week I decided to call the orthopedic doctor who did my surgery in 2006 to ask again if there was anything that could be done to relieve the pain. He ordered a fluoroscopically-guided injection which is what I had done today. Basically, the radiologist uses an X-ray/CT scan to locate the exact location of the joint and where the steroid medication will be administered. Luckily I didn’t have to wait long once I checked in and filled out the annoying paperwork (that I have filled out a million times already for MRIs). I was escorted to a procedure room and was then told to climb up onto the table. The doctor instructed me to lie on my left side with my right ankle facing up. He washed and sanitized the area with alcohol and disinfectant. Then he inserted the needle with a general anesthetic to numb the joint. That hurt pretty bad since my ankle is already very tender and sore to the touch. After the anesthetic was administered (and I was silently gripping the sides of the table trying to not wince from pain), the doctor injected the contrast dye. This felt very strange and despite the numbness, I could feel the liquid of the dye worming its way into my joint. Then, with the aid of the X-ray and the dye, the doctor injected the steroid. “That’s it, you’re done.” Thank God. Once the needle was out I felt a lot better and proceeded to sit up and then hobble off of the table and limp back into the waiting room. I’m really crossing my fingers that this will work and I will finally have some answers about this stupid, frustrating ankle. The technician told me that it can take up to a week for the medicine to really take effect, so I need to be patient. I thought to myself - yeah right, more patience. It seems no matter what is going on with my RA – waiting for steroids to take effect, waiting for flare-ups to go away, waiting for medications to get covered from health insurance, waiting for my next doctor appointment – this disease is constantly testing my patience. Some days I’m amazed that I have any left.
March 28, 2011
Sorry it’s taken me so long to post about JAM, but I’ve been dealing with a particularly painful flare-up for the last few weeks. My right wrist was especially bad, which made typing difficult. GOOD NEWS – the flare-up is much better! And, I didn’t have to go back on prednisone. I just kept trying to eat healthy, stayed off caffeine, took fish oil capsules consistently, and tried to get more sleep. With this mysterious disease, who knows really why the flare-up occurred and/or why it’s now better. I wish I had some answers instead of guesses. I’m so happy to not be in such pain anymore though – I hope it lasts.
Here are a few photos that I took at the Juvenile Arthritis March (JAM) at the Mall of America March 5th. It was my second year photographing JAM for the Arthritis Foundation and it proved once again to be an excellent event. My only complaint is that I feel I maybe got better photos last year. For some reason, the Arthritis Foundation had TWO additional people taking photos. These two girls really got on my nerves by the end of the walk because they kept jumping in front of me “stealing” my shots. I don’t know why three people were needed to take candid shots. But anyway, it was a great experience again and really inspiring to see all of the people who participated in the walk and who raised money for the Arthritis Foundation.
If you’re interested, you can see more photos on the Arthritis Foundation’s Shutterfly site: