I’m having a flare-up now for seemingly “no reason.” Both ankles, knees, hands and feet are really hurting. I DO NOT WANT TO GO BACK ON PREDNISONE! Hopefully if I drink more water, lay off the caffeine again, and get more sleep ASAP this will get better. Otherwise I really have no clue why this is happening now other than my body wanting to be a huge jerk. Do you ever find yourself silently urging RA to just leave you alone? I’d love it if it would take a damn break once in a while. I’m so crabby. Go away, pain. Go away.
Sorry, I know I forgot to post yesterday. However it was a strange Monday which felt more like a Sunday, so…ah, yeah. I also didn’t get out of my pajamas all day (lazy). Surprisingly my work was closed due to a crap-load of snow we just got Sunday and yesterday. I’m so sick of this weather. CABIN FEVER. Will Spring ever come? I am growing more and more doubtful. And restless.
In RA news, my right hand and wrist are starting to flare up. I’m a few weeks overdue for my Remicade infusion, so maybe that’s why. I just scheduled my Remicade appointment for Friday afternoon, so it will be good to get that over and done with until the next appointment in April. Not surprising, but I also found out recently that PANF (Patient Access Network Foundation) is currently out of funds, so after this infusion Friday I will have to pay all out-of-pocket costs for my future Remicade infusions unless they get more money. This is worrying, but it has happened and worked out in the past so I hope by the time I need another infusion they’ll have more funds for RA. I just can’t afford to pay $1,000 every two months for one medication.
TONIGHT is Week Two of the karaoke contest at Grumpy’s. The theme this week is “the 70s” – I think I’ll be singing Hanging on the Telephone by Blondie and Heroes by David Bowie. KARAOKE MANIA! When my RA or the weather or any other little stupid thing is getting me down, it’s always really great to get together with friends. I can’t wait for tonight. Hope I don’t bomb.
This weekend was a bit of a crazy one, for me anyway. I went out Friday and Saturday night getting about five hours of sleep total. Alcohol units consumed – too many to want to count. Surprise, surprise my joints were very sore and painful Saturday and Sunday thanks to the incredibly unhealthy weekend. Oh yeah, also add in the fact that I ate a disgusting amount of McDonalds and WHITE CASTLE. Someone should probably just shoot me right now and end the misery. But! It’s Monday, a new day, a new week. It’s time to detox and get back on track. Was the sleep-deprivation and arthritis flare-up worth it? Yes, I think so. I feel like I haven’t had much of a social life lately and it was really great to hang out with friends again, even if I overdid it a bit. The joints seem to be back to normal now, thankfully, after sleeping 12+ hours last night. Rheumatoid arthritis is such a frustrating mystery most of the time, however I do know with 100% certainty that lack of sleep (and boozing) makes me noticeably flare up and hurt all over.
Sunday afternoon I decided to take some photos in the St. Anthony Parkway area of Northeast Minneapolis. It was a very gray dreary winter day, but I think I got some good shots. Check out the photos on Tumblr – meinherz.tumblr.com
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.
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.
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
In a brief effort to improve my health and lose weight a week or so ago, I decided to try lifting these little 3 lb orange weights a few times a day, every day. At first I was huffing and puffing and “feeling the burn” at the end of each mini “workout,” but also feeling good and energized and happy that I had exercised a bit. I really hoped that this would help me lose some weight, too.
I’ve been 20-25 lbs overweight for the last 5-6 years, mostly due to medication side effects and lack of exercise (my suspicion). Feeling fat and ugly and sluggish and like a disgusting old lump on the couch only adds to the frustration and depression of having R.A. But this is a topic that deserves its own post(s), so you’ll have to wait to read about that another time.
Let’s get back to me looking ridiculous pumping iron in my pajamas in front of the TV every night. So yes, hooray! I can lift these weights and shave off some of my fat arse in the process. Good plan, right? WRONG. After about a week of weight lifting I am having an arthritis flare-up in my left shoulder, both elbows, and both wrists. At first I hoped it was only muscle soreness, but now I fear my gut instinct is true and it’s the arthritis (it’s not going away – always a good indicator). I’m off my exercise plan and today I reluctantly started taking 10 mg of prednisone to try to get this flare-up under control.
The presecription: prednisone daily, rest, rest, rest, and wait. Don’t move the shoulder unnecessarily. Don’t move the arms, in particular the elbows, excessively or in a weird manner. Wrists? Well, might as well try to not move the hands either (hands are connected to wrists, in case you forgot – I do sometimes).
What’s the next exercise plan that won’t land me in an iron body cast? Swimming/water therapy could be it. The warm water pool at the Courage Center feels like heaven; it just may be a fair enough trade-off for having to appear in a swimsuit in public. Hmm.
It really is a shame I can’t continue with these weights, though. Anybody have any other ideas?