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: http://arthritisfoundation.shutterfly.com
March 25, 2011
I’m so happy. This flare-up seems to be getting better and WITHOUT being on prednisone! I could cry I’m so relieved. I hope it will totally go away. I think I’ve lost a tiny bit of weight, too. Patience is very difficult sometimes.
February 1, 2011
Sorry for not updating yesterday but I stayed home from work sick and basically spent all day lying on the couch watching TV in my pajamas. I don’t have that much to report right now anyway. I seem to be having a small flare-up in my right shoulder at the moment which started sometime last week. The pain isn’t that bad, it’s just more of an annoyance. I think I should be able to get rid of it without having to resort to going back on prednisone. I hope.
Regarding other exciting RA info – I keep meaning to call PANF (Patient Access Network Foundation) to see if I still have available funds from them to use toward my next few Remicade infusions. I’m due soon for my next infusion and I don’t want to have to put it off, of course. This shoulder flare-up is making me suspicious of needing the Remicade soon. PANF helping me out with my deductible/out-of-pocket for the insanely expensive Remicade infusion is wonderful and I appreciate it so much. However I’m also not looking forward to having to deal with all of the paperwork crap and waiting two months for everything to go through from Fairview billing/health insurance/PANF. Dealing with all of that is such a huge pain, but I know I shouldn’t complain. Without the help from PANF and/or the HealthWell Foundation, I would not be able to get the medication I so desperately need.
January 17, 2011
Not a lot is going on right now with my RA, thankfully. My ankles are painful but they always are, so that’s nothing new. Otherwise my joints feel pretty good. I’m staying away from caffeine, which I believe is helping to keep my RA under control (but who knows, really). However I am still having issues related to my thyroid and anxiety. I went to my internist today to talk to him more about this and left feeling rather disappointed. He seemed to rush through the appointment, not really listening to me that closely. He also contradicted himself in major ways a few times, which I also found frustrating and distressing. I know that thyroid conditions can be very tricky and there is no exact science when it comes to diagnosis and treatment (which is similar to rheumatoid arthritis). Every patient is different and every body reacts differently to medications and the disease itself.
So, long story short, I believe that I have been over-medicated (levothyroxine) for an underactive thyroid (slightly high TSH) which has been causing the anxiety and other hyperthyroid symptoms. I’ve been completely off the thyroid drug for about two weeks now, and I do feel better, yet I’m still having anxiety problems. I’m really hoping that I just need to wait it out a bit longer and that I’ll go back to feeling normal again. In the meantime, my doctor prescribed an anti-anxiety medication for me to take on a temporary basis. It’s supposed to be non-habit forming with no withdrawal symptoms. I hope that will start to kick in soon and give me some relief. This has all been so incredibly stressful. I think I’d prefer to have an RA flare-up rather than deal with this anxiety crap.
December 30, 2010
I’ve been off caffeine now for two weeks, and while I greatly miss my daily cups of black tea and coffee, I think cutting out caffeine has made my arthritis better. I’ve been meaning to give it up just for general health purposes, but this time it’s been out of necessity.
The back story that prompted my caffeine sacrifice is that two weeks ago I started suffering from extreme anxiety and mini panic attacks for seemingly no reason. I’ve had anxiety and panic attacks in the past, but they were always a result of some specific thing(s) I was worrying about. This time, the anxiety hit me out of nowhere. The normal stresses of work and Christmas busyness have been getting on my nerves this month, but nothing to freak out about. Nothing worthy of heart palpitations, shaky hands, stomach pain and nausea.
After a couple days of very uncomfortable jitters and jumpiness, I decided to call my pharmacist and ask about one of the medications I’ve been taking that had just changed. I’ve been on citalopram, a generic for celexa, for the last two years. I’ve never had a problem with it, but wondered if the latest refill might be causing the anxiety. The new refill was also for 20 mg of citalopram, but it was from a different manufacturer than what I was used to taking. Speaking with the pharmacist made me feel a bit relieved (that I wasn’t going crazy) and confirmed that changing the manufacturer of a generic drug could indeed cause these types of side effects. She immediately offered to refill my prescription with the former generic I was used to. The next day I threw out the “bad” drug and started back on my regular medication. I was hoping this would solve the problem and that I’d feel normal again right away. However, it’s not until…um…yesterday that I really feel better. Maybe it just takes this long for the “bad” generic to get out of my system and my old stuff to kick back in? I have no idea, but it’s been really awful feeling so anxious for this long.
July 23, 2010
I had my Remicade I.V. infusion today which went well, as usual. Today’s session was especially nice because for most of the three hours I was there, the entire place was empty. QUIET! While nurses took my vitals, pumped my veins with a steroid, saline, and finally Remicade, I tried to relax and read my book. These bi-monthly infusions are kind of a pain, but I prefer them over having to give myself injections of Humira or Enbrel weekly or bi-weekly (which I have done before). The Humira injection is especially painful due to the preservative that’s in it (the worst stinging pain you can imagine as soon as the needle pierces your skin). Yes, I’d much rather have a nurse gently hook me up to tubes than to have to stab myself with a sharp dangerous needle every two weeks in the fat of my lower abdomen or upper thigh. I’ve been on and off Remicade since 2003, and throughout all of the tests and trials of other similar medications, so far it’s been the one that has worked best. I feel very fortunate that during my decade of having RA I haven’t had a lot of trouble dealing with side effects from all of the strong medications I’ve been on. Other people I know and have heard about have suffered almost more from the meds than the actual RA. It’s a very frustrating and “Catch-22″ situation – what’s worse, the disease or the drugs?
Here is some “fascinating” information about Remicade from their website — if anybody’s interested in what is coursing through my veins at the moment:
REMICADE is a biologic therapy that recognizes, attaches to, and blocks the action of a protein in your body called tumor necrosis factor alpha (TNF-alpha). TNF-alpha is made by certain blood cells in your body.
- The immune system protects the body by responding to “invaders” like bacteria, viruses, and other foreign matter that enter your body by producing antibodies and putting them into action to fight off the “invaders.”
- In plaque psoriasis, rheumatoid arthritis, psoriatic arthritis, adult Crohn’s disease, pediatric Crohn’s disease, ulcerative colitis, and ankylosing spondylitis, TNF can cause your immune system to attack healthy tissues in your body and cause inflammation and damage.
- If these diseases are untreated, it can cause permanent damage to the body’s bones, cartilage, and tissue.
- REMICADE will not cure inflammatory disorders, such as plaque psoriasis, rheumatoid arthritis, psoriatic arthritis, adult Crohn’s disease, pediatric Crohn’s disease, ulcerative colitis, and ankylosing spondylitis, but blocking TNF-alpha may reduce the inflammation in your body.
A possibly lengthy, hopefully not boring post about the hula-hoops I have to jump through and numerous handstands I must do in order to afford to get this treatment. Without insurance , the total charges for Remicade and its administration = $6,275.00 – EVERY TWO MONTHS. I probably don’t have to tell you that my crappy insurance doesn’t pay for all of it. Thank God for The Patient Access Network Foundation, which has allowed me to continue with Remicade and therefore let me live a fairly normal life (instead of one of intense pain and probably bound to a wheelchair). But yes, more on this later.
(P.S. My knee is better and it does not miss the peas)