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.
April 30, 2010
I’m driving up to St. Cloud tomorrow morning (EARLY! auuugh…6:30) to take photos for the Arthritis Foundation. There’s an arthritis fundraising walk going on there, similar to the annual one in the Twin Cities and the JAM walk I volunteered for in March. It’s a really nice course/path by the river and I’m looking forward to it. I just hope I can drag myself out of bed and get there in time. I am NOT a morning person, and I’ve had to wake up super early every day this week for Census training. It will be worth it though. Let’s hope I get some good pictures (I’ll post them on here sometime soon, probably).
Sleep…sleep…I JUST WANT TO SLEEP. uhhhhhh.
And my body is hurting worse as I wait to get accepted for Remicade assistance. I worked two hours this morning for the Census and then 5+ hours at Dan’s typing/data entry. By the time I left there my wrists, hands, and shoulders were throbbing. My right hand is starting to swell, too, which is worrying. I just hope my application with the Health Well Foundation goes through next week. Why must these things take so long? I need my drug now! I refuse to go back on prednisone.
ok, goodnight invisible readers
April 28, 2010
Spring is finally here, it seems, and I should be joyous and giddy and rolling around in the grass with happiness. Right. I would be skipping through the dandelions right now if I weren’t so exhausted from working two jobs and trying (unsuccessfully so far) to get ready for a fast-approaching art show/event. Dealing with large medical bills that keep pouring in and problems getting medical assistance for the Remicade infusions I desperately need are also huge weights upon my mind and body. (Sorry if this isn’t a very cohesive post, by the way, but I’m just trying to type out the mess that’s jumbled in my brain at the moment)
I just started a new Census “operation” and I’m in training this week. This is the fourth Census job I’ve worked on since last year and the training is the same as all of the others – HELL. And by hell I mean boring as hell. I’m not entirely sure if hell is boring, but Census training is definitely a form of slow tedious torture which seems like hell to me. It also doesn’t help that I sit next to an irritating blabbermouth woman who watches me like a hawk and constantly asks the leader, the class, and me stupid questions (such as demanding to know what I’m eating for lunch every day, among other things). By the time I escape for the day my head is about to split apart and all I want to do is go home and sleep for a week or two. But no, then I must race to my evening debt collection call center job for another four hours spent being bored out of my mind with a few interruptions from people swearing at me over the phone. This is not my “dream job” either. My tension headaches have returned and my fingers are starting to swell a bit and become painful because I’m due for my next I.V. infusion. I’m actually getting really worried about this but what can I do? I have no choice. I cannot afford to pay almost $1,000 out-of-pocket for this treatment. I’m currently awaiting another medical assistance charity/foundation to review my application to see if I can get assistance from them for Remicade. They’ve helped me out in the past, for which I’m truly grateful, yet I’m reminded once again how they have a bad tendency of screwing things up. My application is now being held up because they apparently have not yet received the form from my doctor. After several phone calls, I was told my doctor DID fax it to them already. So. Is it lost? Do they not know what they’re doing? Was it faxed to the right number? So frustrating. I have to call there yet again tomorrow to try to sort this out. I’m afraid that it will probably be June before I can have my medication/treatment again. This is stressful and worrying because I do NOT want to have to go back on prednisone in the meantime. I’ve been so happy and relieved that I’ve been able to stay off of it for the last three months.
Anyway, sorry for the bitch-fest but I’m just really fed up with everything now. I’m tired of working multiple jobs that never earn enough to pay the bills. I’m tired of fighting with my insurance company and just medical stuff in general. I’m especially disappointed because I found out tonight that I’m probably not going to be able to get the time off work I requested to get ready for the art show. I hope I don’t have to bow-out of it. I just don’t have time to do the things that I actually care about, and that’s what bothers me the most.
Ok, done whining. I’m going to read now for a bit before bed. Oh! Here’s some GOOD news – I managed to get back on my bike today quick before work and did another 4-mile ride around Palmer Lake. I haven’t been biking for two weeks now (SHAME), so I’m glad I made myself do it despite being exhausted from work. It was so beautiful riding along the trails, too, with everything in bloom.
April 3, 2010
Once again I can’t believe how long it’s been since I updated this thing. I am truly sorry, if there’s anybody out there missing me (hello? hello?). I’m still alive and unfortunately I still have arthritis and all of the joys and pains that go along with it.
So what’s new? After a seemingly failed synovectomy surgery on my right ankle three years ago, I basically had given up in frustration on the stubborn joint. Just recently I decided to take up the fight again and try to see if there’s anything else/new that can be done to help me. I’m so tired of having to limit myself and being forced to sacrifice little things that I desperately want and enjoy, such as taking a simple WALK, and being able to travel. I can’t stand to be on my feet for very long due to this constantly swollen and painful ankle. I don’t understand why it has been such a mystery and struggle to figure out what’s wrong with it and to fix it. So, I have started the “process” again of doctor appointments, X-rays, fighting with my insurance company, and having to hand over most of my paychecks to pay the bills. I just had another MRI yesterday and will find out the results in time for my doctor appointment Tuesday. I fear that another surgery is on the horizon, but what other choice do I have? I need to get my life back. Soon.
Despite all of this complaining, I do have some wonderful news that I saved for last. I have been PREDNISONE-FREE for almost two months! You have no idea how happy this makes me. Well, maybe you do. I’m extremely thankful for this and I hope it can continue for a long time.
OK, that’s all for now. I’m also very happy to be back writing on this blog. I have some exciting and positive things coming up soon with the Arthritis Foundation, but I’ll save that news for another time.
EOB = Explanation of Benefits = how much money I have to shell out for medical bills
PANF = Patient Access Network Foundation – I just found out that they are currently out of funds for rheumatoid arthritis patients, so now I’m on the waitlist. This is bad since I have an upcoming remicade infusion at the end of the month and have no way to pay for the out-of-pocket portion ($900).