Up and not able to fall back asleep at mumblemumble o’clock in the morning… My mind races… my wrist is tender… my toes and fingers ache. I’m thinking taking one of the post-op percocet would be wonderful, just to help … Continue reading
Been humming the old Sesame Street song, That’s About The Size Of It… Here are the lyrics Oh everything comes in its own special size I guess it can be measured by where you put your eyes It looks big … Continue reading
Up bright and early this morning… nothing out of the ordinary there, I’m almost always up obscenely early. But this morning I’m not enjoying it nearly as much as I usually do.
I stopped my Enbrel and my MTX about a week and a half ago… and I’m really feeling it the last day or two. My knuckles are achey… the front half of both feet feel tingly and achey and my toes are starting to not feel right again. I was hoping it would take longer than this to start feeling the “going away” effects of the meds, but no such luck. So I’m taking naproxen to try and ease out the swelling this morning and looking forward to being able to take my meds again.
And according to my surgeons (and I think having doctors with a sense of humor is awesome) I can start taking my meds a couple days after the surgery. It made the PA laugh that I was so surprised…
Yesterday was my pre-op appointment. I found out that it isn’t just in my head that I feel the ends of the bone in my arm moving sometimes. It probably is, since they aren’t connected to each other. And they have apparently never been connected to each other. Nice. At least I’m not smoking anything anything good and imagining it.
The PA told me that they are going to chop off the ulna and wrench my arm to make it able to turn the right way (to pronate, to supinate, to make it work the right way). In my heart I don’t really want to know the details, but it’s good to be told. The answered all my questions about how the chopping off is going to work, what will happen inside my wrist when it happens and they calmly told me all of the ways that this works. In my case it will be cutting off the end. Other people have to have he middle of the ulna chopped out and the end affixed to the end of the radius so the twist happens in the middle of the arm instead of the wrist.
They figure that the surgery will take at least 3 hours (give or take) and it is the kind of surgery that they do all the time.
They took time with me and talked to me. Told me that I need to be taking Naproxen (not the over the counter kind… the holy crap dose they can perscribe) to keep the inflammation down now and for the next month or so so I can heal until the Enbrel and MTX can kick back in. Not thrilled about taking so much, but if it will help and it is just for a specific time frame, I will suck it up and keep my body in as good a shape as I can for the time I need to.
So today I go on a ‘script’ run to the pharmacy and get both pain pills and NSAIDs.
I’m kind of scared of all this. But I probably would be more scared if I wasn’t actually looking forward to being able to use my hand again the right way and all of the weird places and all of the new ouchies are.
The saga continues. I am going to take a nap while this morning’s over the counter meds dose kicks in and hopefully enjoy the biggest part of the day.
Another year, Another chance to take stock and think about my Invisible Illness…
1. The illness I live with is: Rheumatoid Arthritis, Raynaud’s Syndrome, Sjögren’s Syndrome
2. I was diagnosed with it in the year: 2009
3. But I had symptoms since: 2007
4. The biggest adjustment I’ve had to make is: remembering that a compromised immune system means I have to think about everything I do, ABSOLUTELY everything… I can’t buy a glass of lemonade from the kid down the street without thinking about what germies might be flying around the drink, the cups, the hands of the little one. What can I catch from the can of pop I would love to drink? What can I catch from riding the elevator? Hand Sanitize is my best friend. It isn’t fair.
5. Most people assume: I’m fine, I’m imagining things, their condition is way worse than what I may have, that if I take an advil I will be okay.
6. The hardest part about mornings are: having to take stock of how I’m feeling and determine what outfit will hurt the least putting it on
7. My favorite medical TV show is: anything on discovery fit and health
8. A gadget I couldn’t live without is: my iPad
9. The hardest part about nights are: finding a position that will let me sleep
10. Each day I take __ pills & vitamins. (No comments, please) 12 (plus two shots a week in the stomach)
11. Regarding alternative treatments I: have tried many, and I know many don’t work
12. If I had to choose between an invisible illness or visible I would choose: invisible, sometimes anonymity has its advantages…
13. Regarding working and career: some days are awful, some days not so bad. Sometimes standing up after sitting for a few hours makes the pain an 11…
14. People would be surprised to know: that even though I’m pretty much controlled, it will hurt for the rest of my life to some degree
15. The hardest thing to accept about my new reality has been: accepting that I have limitations.
16. Something I never thought I could do with my illness that I did was: walk a half marathon very fast
17. The commercials about my illness: PISS me off. I don’t mind being reminded of it, but don’t make it sound like either I can’t do anything or that if I just take your drug I will be able to spend 50 hours a week on the stair-master with a perky little smile.
18. Something I really miss doing since I was diagnosed is: Not having to think about what I could catch from whatever it is I’m doing.
19. It was really hard to have to give up: the concept that I’m okay and I will be okay
20. A new hobby I have taken up since my diagnosis is: Telling people about the fact that it totally sometimes sucks to have RA, but life is livable and you CAN do something, even the small things, to make yourself smile.
21. If I could have one day of feeling normal again I would: go to Disney, carry everything I want to carry, and walk all day long without thinking about how bad my feet and hips and ankles are hurting
22. My illness has taught me: that I have limitations
23. Want to know a secret? One thing people say that gets under my skin is: Oh yeah, my grandma has Arthritis too. Have you tried Advil/tylenol/excedrin/aleve? NO… you know what, I never ever THOUGHT to try pain meds to try to push the pain and lumps and bumps back into the background. THANK you for enlightening me…
24. But I love it when people: ask, talk, smile, and even gentle hugs
25. My favorite motto, scripture, quote that gets me through tough times is:
It isn’t good, it isn’t bad, it is just different
and…
Be The Best of Whatever You Are
Poet: Douglas Malloch
If you can’t be a pine on the top of the hill,
Be a scrub in the valley-but be
The best little scrub by the side of the rill;
Be a bush if you can’t be a tree.
If you can’t be a bush be a bit of the grass,
And some highway happier make;
If you can’t be a muskie then just be a bass-
But the liveliest bass in the lake!
We can’t all be captains, we’ve got to be crew,
There’s something for all of us here,
There’s big work to do, and there’s lesser to do,
And the task you must do is the near.
If you can’t be a highway then just be a trail,
If you can’t be the sun be a star;
It isn’t by size that you win or you fail-
Be the best of whatever you are!
26. When someone is diagnosed I’d like to tell them: your life isn’t over… some days suck, some days are beautiful. Live in the beautiful and carry those days into the days that suck.
27. Something that has surprised me about living with an illness is: I can do it…
28. The nicest thing someone did for me when I wasn’t feeling well was: a hug and a cup of tea
29. I’m involved with Invisible Illness Week because: I have one, I life one, WAY more people live with it than anyone realizes… and it matters
30. The fact that you read this list makes me feel: grateful, hopeful, like I may have accomplished something….
I knew starting out this morning that it was going to be a not great day and (whether it was because I was looking for it to be less than great or because it was just less than great) I … Continue reading
Okay, okay… I’ll admit it, I crazy as a loon. And I will never learn… but… hey… it is what it is. I found Out Of Joint by Mary Felstiner (2005) and decided that it was worth a read… I … Continue reading
Okay… Good news… Enbrel seems to be agreeing with me (at least for now). I had some itchies at the the injection site. I was light headed for about an hour. I had a headache the next day. The light headed was probably because I hadn’t eaten. The headache Sean said usually isn’t Enbrel, but Enbrel says it is common. I had one.. whatever it was, I had one yesterday.
Yesterday my mom kind of poked at me because I was talking about Tai Chi for Seniors because I’m only forty(mumble mumble)… he he he … I’m 45 and that isn’t even 50 yet and that SURELY isn’t senior. HOWEVER… given that sometimes I feel achey and tired… I figure that if I read a book designed for people older than I am… when I have those days… I can stop and think… hey, I can fall back and take even the slowness of Tai Chi just a little more slowly and a little more gently.
I also explained to her what squishy is… kind of. The doctor tells me that my joints are squishy. I believe her. She went to doctor for a really long time… I figure she knows. I can’t feel the squish she talks about. My reference to the squishy-ness is… my one pair of running shoes doesn’t fit my toes without hurting so I wear my other pair. My knuckles don’t bend quite right. My wrist aches a little bit differently. My hip or my knee doesn’t feel right. The squishy is swelling (which is why my toes don’t fit my shoes quite right) but not like I got hit with a baseball swelling that is a bump that is big and you can see… more all over swelling. Don’t get me wrong… I can sometimes actually SEE the swelling. My knee has gotten bad enough that I have HAD to wear one of my really big pairs of sweats because my jeans wouldn’t go over it… it was almost twice the size of my other knee. Mostly I feel it, though, rather than see it obviously.
And today (as is the title of the entry) we went for a walk. 8 miles… to the library and back… Stopped off and the pharmacy… picked up Tiger Balm Ultra (it’s white, not red) and warmer and longer lasting… I love this stuff. Right now, I’m feeling the 8 miles… my hip is a little bit sore and I feel like I could nap a week… but I feel pretty good and my “tight” running shoes are fitting fantastically…
It was in the 40s when we left home, it was in the 60s when we got home… I was sweaty BIG time by the time we got home (and for some reason when I get sweaty… my bra… love my Danskin bras… gets soggy and when I sit down I freeze… so hot bath and now a well deserved rest before we go pick up the squirrel)
Posted in Journalling, Post A Day Post, rheumatoid arthritis
Tagged enbrel, postaday2011, rheumatoid arthritis, squishy joints
By: Dave Gordon
The ancient Chinese martial art of Tai Chi may provide physical and emotional relief for people suffering from arthritis. Taking classes twice a week for two months helped people with osteoarthritis, rheumatoid arthritis and fibromyalgia feel better and move more easily. It reduced pain, stiffness and fatigue, and improved balance. Tai Chi involves slow, gentle movements along with deep breathing and relaxation to build strength and flexibility. Participants who took the classes felt better, improved their sense of wellbeing and slept better. The study was funded in part by the Arthritis Foundation and the U.S. Centers for Disease Control and Prevention, and was presented at the annual scientific meeting of the American College of Rheumatology in Atlanta.
Posted in rheumatoid arthritis, Tai Chi, yoga
Tagged rheumatoid arthritis, tai chi, yoga
Yesterday I went on adventure. Okay… it was a LITTLE adventure, but it was fun and it was something I had wanted to do for quite a while. I went to the library. Not the one I usually go to… … Continue reading
Well, yesterday was my first day of yoga. Sixty min a day once a week is going to be the perfect amount to get me started. I tried “taping” the class… but my nano won’t pick up enough to make it very useful. I will try with my little voice recorder next time. It seems to do better.
The class made me sore, but sore in a good way. The teacher gave us a pretty thorough amount of information on poses… and after class people were kind of pulling together into a team to talk about how NOT a total beginner’s class it was and how fast she went and how they thought everyone did.
There were some people in class who were WAY good. I followed along with the lady next to me. Apparently that made me seem to be a better than average person. interesting.
A couple people commented on how far I could take the poses since this is my first class. I figure my Rheumy will kind of comment somewhere along the way. She already made the comment that I should, based on where I am in my disease, hurt way more than I do and be less limber than I am but the stretching that I do in the morning after I work out (which I SO have to get back to…) is having its effect. I’m glad it is. Maybe if it wasn’t… I would have gotten help sooner… but it is what it is.
Now… I need to get a listing of all of the poses that we did and start looking them up and getting a better idea how to do them RIGHT and how to move from one to the other.
Posted in Fitness, Health, rheumatoid arthritis, yoga
Tagged rheumatoid arthritis, yoga
Lots of quality Rheumatoid Arthritis Information from RA Warrior.
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