Once again I’ve been M.I.A. from this blog, which makes me feel guilty and embarrassed. I know it’s my blog and I can do (or not do) whatever I want to with it, but I hate that it’s been neglected so much lately. Apologies to everyone who’s been wondering where the heck I’ve been and what I’ve been doing!
Happily, I have still been doing a lot of writing about RA and related issues for RheumatoidArthritis.net. One of my latest published articles gives a bit of info to help explain what’s been going on with me lately, if you’re interested to read it. Basically, it’s been a really rough spring and summer, with months comprised of major health problems and, well, some very bad luck. In May my car was stolen along with all of my camera gear (it was hidden in the car). I also had a ridiculous accident the same night which resulted in several fairly serious injuries. And my RA has been flaring up since April, which doesn’t help matters. So! Below is a link to article where I wrote about all of this crazy stuff. Don’t worry, it’s not entirely depressing and whiny, I promise. I have been working hard to get things back on track!
Hello! I can’t believe how long it’s been since I’ve posted on here. Very embarrassing. So many things have happened regarding my health, work, family, and friends since November. There’s a lot to catch up on and I am going to do it!
Right now, I’m going through a pretty bad flare-up in both feet and ankles and a bit in my hands. The feet/ankles flare started about a week ago and then got quickly worse while I was in Chicago last weekend for a wonderful conference called HealtheVoices. I will write more about that very soon, I promise! Despite suffering through the staggering physical and emotional pain of the flare, I was so inspired and energized being a part of the conference again (I was at the first one held last year in Jersey City, NJ). Just being there with my fellow RA friends and advocates as well as connecting with people who are advocates regarding other chronic illnesses…it was incredibly motivating and empowering. But more on that later! Know that there are a lot of people out there who really care about those who live with RA and are passionate about making lives better. This gives me great hope.
This post is a bit rambling and scrambling, but I wanted to post something now. Finally! I’m still here and this blog and cause are still so very important to me. They always will be. :)
I hope you’re all happy and as pain-free as possible out there…in the Internet universe.
But aren’t they all inconvenient? I’m sorry I haven’t posted in such a long time. This winter in Minnesota (and other parts of the world, I know) has been brutally depressing, and I basically haven’t felt well throughout most of it. As I sit here writing this, I’m looking out my window at SNOW covering everything. We got dumped on yesterday and last night, which isn’t helping my mood or physical state of being. I’m bummed out, I’m stiff, I’m achey, I’m anxious, I hurt all over.
Anyway, I’m currently in the middle of a pretty bad flare-up. My stubborn right foot and ankle have been in intense, swollen, throbbing pain all week. The left ankle is also flaring up but not as bad as the right one (which is its usual pattern). I’m also taking 30 mg of prednisone, which is making me feel sluggish and bloated and agitated and mental and everything that wonderful prednisone likes to do to a person. I think it’s helping, a little. I hope it will hurry up and knock out this inflammation ASAP though. I’m supposed to drive six hours south to Omaha this weekend to spend time with friends I haven’t seen in a while, but I don’t see how I can do that with my inflamed foot. Driving only irritates it more. Not happy.
So, to sum up–winter came back last night and dumped a load of snow and misery on my street. RA came back this week and dumped a load of inflammation on my feet. I’m pretty pissed off about both things. Hopefully there is a silver lining to this, somewhere. There must be, right?
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 Fairviewjust 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.
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.
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.