April 3, 2012
Spring is here and change is in the air, it seems. Lots of things are happening right now – good and bad. My long-term temp job at Fairview just ended last Friday so now I am unemployed again. I have a few job applications in the works, so hopefully I’ll get some good news regarding those. My RA has been flaring up out of control over the last few weeks – my ankles are really painful. I’ve been taking 20 mg of prednisone and it doesn’t seem to be working, so I’m really worried. The doctor’s office is supposed to call me back today sometime. Still waiting. My knees and hands have also been bothering me somewhat so it seems RA is probably the culprit regarding my ankles. My surgery ankle (the right one) has been especially painful. I’m almost tempted to wonder if something else is wrong with it. The D.C. trip is coming up in two weeks and I just hope and pray that my ankles will calm down significantly by then. My remicade infusion is scheduled for Friday so I hope this flare-up will get better once I have that.
Good news – Despite the current flare-up, I’ve started riding my bike again! I rode around Palmer Lake (about three miles) two nights ago and it felt really good to just be outside and getting exercise. My goal is to try to go on a bike ride at least once a day, even if just for a short ride. I want so much to be healthier and to lose weight. I know I can do it if I work hard enough. Sticking with healthy eating and exercising is the challenge though. Cutting out Diet Coke again is another difficult challenge. Ugh.
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.
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.
March 9, 2011
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.
February 22, 2011
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.
February 7, 2011
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
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.
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