Some mornings I get up, pour myself some cereal, then can’t eat it because it hurts my jaw too much. That same jaw pain will keep me from talking on the phone, flossing my teeth, and even smiling as much as I normally do.
Menfolk beware: this is a post about feminine things.
Ladies, do any of you RA’ers have any experience with early onset peri-menopause? I’ve been having wonky periods (light, late, non-existent, all of the above! And no, not pregnant.) after years of having heavy, cramp-filled ones. I’ve called the doctor about it, but her nurse just passed on the info that I’m too young for that (which is not what I’ve read in my online research), but that I could come in next month for some hormone level tests.
So if you have any information you’d like to pass on, please do below in the comments or you can email me at:
a w a m i b a @ g m a i l . c o m (without the spaces).
Yay! I can tell when I’m due for an infusion now. My shoulder starts acting up. It’s like clockwork.
Today the infusion room was packed. All four chairs had people in them and one person even had a visitor with them (watching TV loudly on his phone). I pulled out some cards to write, glad that this time the nurse was able to get my left arm to behave so I could get things done. One by one, the people around me fell asleep… And they all snored! It was quite funny actually! The guy on the phone gave I on hearing his phone over it all and left. :).
I spent the rest of the day resting. Tomorrow I work at the school. Whee!!
Writing is a struggle against silence.
Just checking in, keeping up the writing thing, cause that’s part of my ongoing goals this year. I had a writing retreat with a longtime writing friend/partner in crime this weekend. We traveled to an undisclosed location and holed up in a tiny studio apartment and wrote, read books on writing, and shared notes on writing related things. Now we’re trading our WIPs (works in progress- she has one to trade, I’m still trying to get there) for reading and helping along. 🙂 It was a really good weekend. I’m feeling all refreshed and writerly again. I organized my writing folder, downloaded the latest version of Scrivener (writing software that my copy of was an old bug-filled beta), and wrote more yesterday.
The downside of all this travel and writing is that I’ve remembered now part of the reason I stopped in the first place: the pain. Oh the pain. Wrists, fingers, elbows, shoulders, back. I’d forgotten how bad it can get. So now I’m looking into some other ways to get my writing in. I’ve got a memo program on my iPhone that will translate my words to text; which it’s doing better than I thought it might. It just doesn’t have a Save function, so then I’ve got to copy and paste by hand. I’ve just spent thirty minutes with the Speech Recognition software on my computer. The tutorial made it seem easy, but the actuality is not so easy. It doesn’t like blogging. 😦 Maybe I’ll just have to copy and paste a lot. 😉
I’ll let you know how it continues to go.
I had another infusion of Orencia today. I was really excited to see my old infusion nurse there. I asked about the old-new infusion nurse, if she was taking vacation days, but she is GONE, which mightily made me happy. Apparently other people had complained about her. I hadn’t, as I hadn’t wanted to seem whiny, but the truth of it was that she was not careful with me and she insisted trying veins that I knew and told her would not work for me. *sigh* So the old infusion nurse is back. YAY!
Unfortunately my best vein is no longer my best vein. Something happened to it while she was off working in x-ray land and now it has a kink in it. It could ease out or I could be left without this happy vein as an option. Who knows. I’d like it to repair itself. Having the infusion in my other arm impedes my ability to get things done during my infusion, like writing, and I’m really trying hard to get back in the habit of daily writing again.
Anyway, I talked to my doctor about the flushing and heat issues I’m having. He hadn’t heard of anything like that, but the nurse later told me that she hears that complaint all the time from other patients, so now I’m a bit confused. Has anyone else heard of this? I’m pretty much constantly feeling overheated and I work up a sweat quite easily. I can’t find anything on the internet on my searches, but maybe y’all have heard something?
I see my primary care physician next week for my usual round of bloodwork and stuff. I’m going to ask him about it and also about how to lose weight. It seems like every time I hit the gym I end up with an infection or complication of some sort, so I’m going to ask for his advice on what to do. It would really ease my pain to weigh less, but I’m going to need some help.
I know it’s a little early, but I doubt I’ll have time again until AFTER the happy holiday to say hello. Have a happy happy Christmas. 🙂
Another month gone by, nearly. I’ve been rushed off my feet with day to day commitments and had been wondering how proper working mom’s handled it all when I had this epiphany: while I’m not paid in cash for any of my volunteer time, I am certainly WORKING in my volunteer hours. So I added up the ridiculous number of volunteer things I do, subtracted out lunches that were more friend visits than volunteer business, added in things that felt like friend things that were actually more volunteer work and came up with NEARLY full time job hours. It was astounding. (Volunteer work I do: Student Health Advisory Committee, Campus Objectives Council, Elementary PTA Secretary and Membership and Homeroom Parent Coordinator–basically 3 people’s worth of jobs, Middle School PTA board, on a team that works as Senders for a Missionary Family, a couple hours a week in the school library, Kitchen Crew at Church, Children’s Social Director at church…and it really does feel like I’ve left something out…)
Anyway, I am still here. I’ve had my last loading dose of Orencia and am having my next dose in January. Still nothing but nausea and easily flushed skin and being sweaty nearly without effort and I’m on the fence as to whether the shortness of breath I’ve had recently is a side effect of the drug or my sedentary lifestyle (I will tell them about it next time I go in, I promise). I’m not noticing any good effects of the Orencia. In fact, I’ve been having a pretty constant mini-flare for the last month; I’ve had to completely take off my wedding band due to circulation issues and can’t get it back on now.
A drug that IS working now is my anti-anxiety drug. As I told my husband yesterday, there are certain things I don’t care about any more and I don’t care that I don’t care about them. It’s really quite funny when you think about it. I’ve been told a few times recently that I’m not acting quite myself…and I’m not. I’m finding myself freer with people again, giving them hugs and laughing more and speaking my mind and just feeling mentally better in general. It’s very nice. 🙂
In other news, my mom is still having health woes. She dropped a bomb on us during dinner the other night that she’s in Stage 3 Chronic Kidney Disease. Later on my dad told me that it’s closer to Stage 4, actually. Basically her kidneys are shutting down and it’s just a matter of time before dialysis or kidney replacement. Some people do stay at Stage 3 for quite a few years though before heading downhill to Stage 4, though. She has a special diet to follow and my dad is trying to get her to follow it. I don’t know how successful he’ll be at that, since it tells her to cut out most of her favorite foods and replace them with things she doesn’t care for and she’s already just not as hungry as she once was.
Let’s see, what else? The kids are getting bigger and bigger. Greg turned 6 recently and Ben turned 9. We had a Power Ranger party and a Pokemon party. Greg is struggling with learning to read, which is a new experience for us at our house. We had Ben tested for the GT program and he can read and do math on a high school level this year. David is still struggling with the middle school transition (he went from 20 minutes a night of homework on a bad night to 3 hours of homework on a good night). He’s in four Pre-AP classes. Nick got kudos at work for his exemplary work this year.
We just had a huge weekend of busy-ness, with a trip to the Polar Express (a local train does a short run to the “North Pole” and back, complete with dancing chefs and elves and Santa) on Friday night,
a Whisky/Beer/Wine tasting hosted by us on Saturday night,and the Annual Family Anniversary Dinner last night.
I am worn out. Fortunately my day ahead includes nothing more stressful than waiting for the appliance repair man and then driving a friend to Goodwill later (she’s loading the ent
irety of her tiny garage into my van and we’re dropping it off. WHEE!). So glad it’s due to be a quiet day. 🙂
When last I posted, I was in the middle of a flare. I thought it would be gone soon and I could pick up my regular pace and get some posting in on various topics, but the flare would not die off like they normally do. I started a prednisone taper, got a little better, then got a lot worse when I came off of it. I couldn’t walk farther than my bathroom and back to the couch.
I called the doctor and eventually got fit in. We agreed that it was time for me to start on the big guns meds again, as my range of motion had gotten to the pitiful point, not just in the bursitis-y hip, but my arms, shoulders, hands, etc. So I spoke to the infusion nurse and got signed on to start Orencia once approval goes through (a two week process, I’m told, which I’m nearly at the end of). Also got a shot for the hip, which of course made it worse for a couple days before it got better. The shot made it so I could make it through all of the end-of-the-school year stuff with the kids (graduations from pre-school and elementary school, award ceremonies, parties) and could get back to all my cleaning (the dishwasher went out a couple months ago and it’s been taking me 2 hours every day just to get through the dishes; the new dishwasher is supposed to be in any day now).
Then, of course, just as I was thinking I’d get some down time finally, my mom managed to hurt her back badly enough that I’m needed to go down and help with her. My dad’s been dealing with her on his own for several days and hasn’t managed to talk her into seeing the doctor (she hates them; hasn’t been to one in years) yet, although she’s reached the point where she’s been in bed long enough to get bedsores. I’m going down to dig through their health insurance stuff and try to make sense of it, find them a doctor off their list, try to get her in with a new doctor asap, and then figure out how to literally get her in to the doctor (not just getting her to agree to it, but actually physically getting her into the car).
And I need to figure out who to get to feed the fish. We’ve not had pets in a very long time and we got fish on Friday, not knowing that my mom was doing poorly until after we’d gotten the fish. My husband is also going out of town this week. Do you call a petsitter for fish? IDEK! (Plus must call all the playdates/parties/babysitter for our date and cancel. AIE.)
*This post brought to you by a night filled with tossing and turning and not sleeping, no, never sleeping.
AIE, but it’s been a rough week! We had our first ever Spring Recital at church, which my husband and I were in charge of. We had a bunch of people helping us, of course, and lots of people to perform, but there was a lot of behind the scenes work that we did for it (getting refreshments, making & printing programs, emailing performers, etc), plus I was a performer as well (our kids, too), so the week started off with a huge deficit of energy.
But there’s no rest for me, because then of course there was also this week the Spring Carnival for our kids elementary school. I’m on the PTA board as the contact person for the homeroom parents, so I’d already spent several weeks emailing, emailing, emailing, preparing documents, sending things home to parents, etc before we even got to this week. Then there was all the running around the last couple days getting stuff ready and purchased and set up, followed by the 3 hours of carnival itself selling tickets and helping to run booths for my kids classes. It was quite a workout.
Needless to say, really, but I totally overdid it.
So today, since I very literally can’t walk more than 20 steps without falling over from pain (I can get to the closest bathroom, but not to *my* bathroom, it’s really annoying), I’m staying home and resting. Every time I close my eyes, though, I’m back in some panic situation, out of food or tickets or prizes or something, and it’s just not restful. I’m trying to think good thoughts, though. Cupcakes, for example. There are lots of those in my kitchen, thanks to a kindergartner that turned them upside down. They just needed to be flipped over and refrosted and they were good as new (the cake walk lady was going to toss them; oh no, said I). So some triple chocolate yum for me later when I feel up to getting into the kitchen. And in the meantime I’ve found a sort-of upright position to look at the computer from, which is a vast improvement from the morning when I was really stuck flat (my hips hadn’t found the right position somehow, but after a lot of effort they’re in a bit better place). So hey, I have both time and ability to catch up on some blogging and reading others blogs that I haven’t had the last few weeks. So yay for that, too! 🙂
Hello everyone! I have noticed in myself a tendency not to blog while things are going all right. Which they have been for quite a while. A few mini-flares here and there, but pretty good. I got optimistic again. I started a new thing at the kids school (a Lego building club; the librarian applied for a grant and I go up and help her help the kids).
Then last night I started feeling it: the fever, the chills, the exhaustion setting in. Woke up this morning feeling like someone hammered on all my little joints with tiny hammers and all my large joints with rubber mallets. I laid in bed for 30 minutes trying to wrap my mind around getting up. Eventually I worked myself out of the bed and into the bathroom, to take some anti-inflammatories and to put some Voltaren on some of the most painful spots. I’d done quite a lot of stirring for last nights dinner, so of course my elbows and wrists were the most unhappy. Then I went out and snuggled some kids for a while, took the older ones to school, and went back to snuggle the youngest before taking him to school. I’d planned to go to the gym today and to practice piano for special music for Saturday and the clarinet for the church recital which is coming up on Sunday. I got about half way through the piano practice before I just couldn’t play any more. I decided to take a break and come back to it later when I was feeling energetic. Hahahahahaha.
I ended up watching a moderately depressing movie (it had sounded funny from the description) and eating lunch and resting some more after. Some already-folded laundry got put away, as did some already-washed-&-dried dishes. Then I picked up the youngest and took him over to the big kids school to help set up for the aforementioned Lego club, but they wouldn’t let us in because a kid was still doing some state-mandated-testing. So we waited around and eventually made our way down to the library. The stairs, they were EVIL. (I’d have taken the elevator, but it was full the janitor’s cart). Lego club was already in motion when we got down there (they didn’t know I couldn’t come in and I couldn’t call down to tell them). Fortunately we had a bit of a break for yearbook photos.
We went home after that, the kids practiced piano, and now we’re sitting at their piano lessons. I miss having my own lessons, but it was so frustrating with the mini-flares and not knowing when they were going to come on. They are so sneaky. At least with a big flare, I have a few hours warning with the fever. Yay for the fever warning system, right? (Thinking positive is my new goal. Yup, yup, yup.)
What else? Nothing much newsworthy. Just life, which is ridiculously busy.
Now I’ve had the pre-requisite two weeks with my meds switched. My blood pressure has gone back down to regular levels all the time now. My nasal congestion is nearly entirely gone and I can smell again (except for the two days that I forgot the new nose spray; those days I got about half way through the day and thought “Why can’t I breathe?! Where are the smells?”). I’m not having the crushing headaches any more, nor the all day vertigo. In short, if it weren’t for this flare I started earlier in the week, life would be nearly perfect.
So now a question: have any of y’all noticed a propensity for flaring the week before menses? I’ve not kept a regular chart of my RA pain levels in quite a while (no one was checking it, so I stopped keeping up; sad, but true), so I don’t know if there’s really a correlation other than this month and last month, but thought I’d throw that question out there. Thanks for keeping up with me, even when I’m not so posty! 🙂