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)
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.