These are NOT my feet, but you get the drift.Prednisone, the miracle drug. Besides the pain being back, there are more side-effects than bone-thinning. I saw my primary on Friday (more about that later) and I had gained eleven pounds since last visit. What? Whatty what what??? I don’t eat a lot, I’ve been losing weight, and my jeans have started falling off when I walk. LOL But my legs were and are swollen and it turns out that I gained eleven pounds of retained-water. And bruising. Side-effects of prednisone. My feet were so swollen my toes were in pain from my shoes. Which I’m lucky I could get on, I guess. I don’t wear shoes unless I am going out. Taking the new drug from the rheumatologist, which has issues of its own, but it will allow me to get off the prednisone by cutting back 2 and 1/2 mg every two weeks. Meanwhile, I am back to not being able to Get Things Done, which is not making me happy at all. Walking hurts.
I googled and could find no solution to the swelling except getting off the med, which has to take time or it can kill you. Oh, joy. Working on my own solution, I sometimes like to read in bed with my feet and legs up against the wall. Hey, it’s comfortable. But the pain means I can’t really lie flat comfortably, so I propped myself up on four pillows and then put my huge green exercise ball on the bed and put my feet up on it. Oh, wow, am I brilliant or what? So comfortable, and I can roll the ball back and forth with my legs and Gertrude got over being scared to death after the first half hour and now will sit right next to that big green thing on the bed. “Like where did that come from, and what the heck is it? Oh, well. She’s not freaking, so I guess it’s okay.” She’s shedding…again. Cat hair everywhere.
So my visit to my primary was the last. He was only filling in til the other doctor comes back from maternity leave. Too bad, cause I really like him. He’s done more for me in a handful of visits than my last doctor did in four years. I’m almost a real person again, thanks to him. I was so going to keep him, and I told him so, which made him laugh. I used to have a friend whose mother kept a list of all the people who had ‘wronged’ her, and how. I have a list in my head of people I am keeping. The UPS guy is on it (I get a lot of stuff from Amazon), because he’s friendly and funny, among others. It’s a good thing. 🙂
So that’s the latest on the saga of Jean’s strangely peculiar life. Does anyone actually read this? Does no one have anything to say or are you unable to comment? Inquiring minds and all. You know. 🙂
I think that if we had brains, we wouldn’t allow these things to happen anyway. As a species, we are sadly lacking in common sense.
UPDATE: A new quote: “On top of all the other reasons the right hates Obama, there is also the fact that he is smarter than they are and he knows exactly what they are up to.” John Cole, from here: Balloon Juice
Yesterday it all came back. The pain, the difficult breathing, all of it. Even my feet hurt. Took three aspirin and that helped, but not much. Awake til 5am because I just could not sleep. Much better today, however. Good, because today I saw the rheumatologist. Two hours. Part of that was the nurse asking me ten thousand questions, then waiting while the doctor read my files from my primary care doctor, then more than an hour of the doctor checking me over and asking me ten thousand more questions. Good doctor. Very good doctor. Turns out I do have pleursy, I might not have fibromyalgia, even though I’ve been tested several times and had all the tender points every time, but prednisone does not work on fibro, and I do not have any fibro pain since I’ve been on it. Weird. Of course, this means I could actually have one of the things they supposedly eliminated when I was first diagnosed fourteen years ago. Whatever. I feel better than I have felt in years. No pain, except the pleursy thing that is fine today, I can walk better, I can do things, I can pick up a chair and carry it instead of dragging it to where I want it. But, I now have more blood tests…they took five tubes today, and I am having an ultrasound of my heart. Back to the primary care Friday, back to the rheumatologist in a month. Also got a new med, because he wants me off the prednisone, since it causes bone thinning and other unpleasant side effects. But man, I want to stay pain-free. I want to keep feeling human. It’s been too long. Wait and see, don’t anticipate, take it as it comes. Works for me.
Today my chest hurts a bit, and the breathing difficulty is back as well. Neither really bad, but there. It’s a damp, foggy, icky day. Maybe that contributes? Still Getting Things Done, which makes me soooo happy. I haven’t had this much energy for longer than a day, or even just for a day, in a very long time, so I am using it. Moved a bookshelf, moved the table and set up the tv, etc., in the corner. The table has to go, which makes me sad, cause I love it, and its’ little chairs, too. But this is a SMALL apartment, with one 12 x 15 main room which has to serve as living and dining, since there is a galley kitchen, not an eat-in kitchen. So minimizing is the way to go. Get rid of things. I can do that.
was a really good day. Went out with my friend Tess. We shopped at three different stores, got an ice cream and sat outside and enjoyed the gloriously beautiful day while we ate it, came back here and played a game on the pc. I walked more yesterday than I’ve walked in a long time. Usually I’m in so much pain after just going to one store that I’m done for the day. No pain yesterday. Energy. Did not get tired until the very end. I am seriously like a different person. Like a real human being. Like I used to be before I got sick. I am not wasting it. Not worrying about if/when it will end. Just taking it as it comes and Getting Things Done and being hyper with the excitement of actually feeling good.
Today my legs are a little stiff and sore, but that’s from walking a lot more than I am used to. It was a really good day yesterday. Makes me happy.
Interesting but disconcerting, when I was looking for something to illustrate this post, ‘women’, ‘men’, or ‘people’ getting things done mainly brought up pictures of housework. Housework. Sheesh! At first I thought it was just women, cause that was my first criteria, but then when I tried the other two, same results. Housework, office work, or irrelevant images. Puzzled R Us.
“Decisions are made by those who show up.” Aaron Sorkin
Still here. Much better than I was, and actually Getting Things Done. I am still on the 20 mg of Prednisone, which almost makes me think I’m not sick, it works so well, but if I go back to 15 mg for a day or two, it all comes right back. Meanwhile, I am working on some serious getting-rid-of-things and rearranging a bit. A little at a time, but it is so great to actually be pain-free and have energy at the same time, I am NOT going to waste it. Getting Things Done is a really good feeling, when you haven’t been able to do that much at all for years.
Trying hard to ignore the news and the idiots who are co-opting our government for their own ends. Remember, voting matters. I’m going with the incumbent, because those on the other side of the aisle are too out there for me. Let’s take away people’s freedoms, let’s starve the poor children and cut off their medical help. I don’t get it, especially since they use religion as a means to get what they want, even though it all flies in the face of what Jesus taught. My friend Tess and I blame cyclamates. Neither of us ever drank soda with cyclamates before it was banned, but a lot of people did, and their brains have obviously suffered for it. Am I right? I am right. LOL
And do we ever need it. Reason and critical thinking seem to be vanishing in today’s America. Fortunately, there are still those whose brains haven’t totally been fried by the crap that’s being put out there. Here’s a link:
Cross-posted from my LJ.
Turns out I may not have whatever they thought I have, and I have to now go to a rheumatologist. My sed rate has gone back to normal, so I should be pain-free. Is that hyphenated? I don’t know. But since I’m not pain-free, and had to up the Prednisone again, something else must be going on. AND, (there’s always an ‘and’, or a ‘but’, isn’t there?) I may have to see an endocrinologist to figure out what’s going on with the potassium levels. Well, I’ve been pretty healthy most of my life, so I guess I can’t complain. But sheesh, I cannot catch a break. Still having minor vertigo since I woke up Wednesday, but doctor says it could be caused by numerous things and to see if the Prednisone helps. So far, not.
On the other hand, I reset my wireless modem to WEP, which is safer, and now I cannot connect my Roku to it. I am NOT going back to cable. I hate Comcast. I don’t watch much tv anyway, but damn, why don’t things just work? Why, I ask you? Oh, you haven’t got a clue either? Oh, well. Later.
I guess this doesn’t just get better. I have pain-free days, and then, like today, pain-filled days. I did have two days (not in a row) where I actually GOT THINGS DONE! Yes! Yes I did!! Not big heavy strenuous things, but things, nevertheless. The best thing about this is the Prednisone is keeping my legs from hurting all the time, so I can actually walk and all without being miserable. Yay, me.