I’ve been fairly fortunate with my Orencia infusions insofar as side effects go. I’ve been on it since October and this is my first sinus infection. I’ve felt a couple trying to start in the past few months, but I’d been diligent in the past about rinsing my nose out as per the doctor’s orders and resting up. Not so, this time. I was super busy last week with book fair (oh how I love talking to kids about books!) and PTA events (serving BBQ at the Fine Arts Night my kids were singing, dancing, and signing at) and a kindergarten field trip to the planetarium (Did you know there are kids out there scared of outer space?! I had no idea.) and the church’s regional weekend (I signed on to do crafts, which is far and beyond easier than working in the kitchen), so I wasn’t really ever home long enough to do more than eat, sleep, and change clothes. Hence the sinus infection. 😦 So tomorrow I go in for yet more antibiotics and hope that this clears up before my next infusion. I also finally get to check in with my OB/GYN about the menstrual issues. I had blood work drawn last week for this appointment.
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!!
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.
Well, I can now say that my Orencia does help. It wore off yesterday in the middle of the day. Just BOOM, no more helpful drugs in my system. I nearly cried. My hip feels horrendous, my hands are cramped up, my feet ache terribly, and my shoulders no longer like me sleeping either on my left side or my right. It’s delightful. I mean, it really is kind of delightful, knowing that my new wonder drug is, in fact, doing something to help and not just causing a nuisance with side-effects. My next dose is nearly a week off schedule, due to the office being closed for Christmas and then New Years and them only doing infusions a few days a week. But it’ll come soon and then we’ll see how long it takes to kick in again.
Other things I’m waiting for: school to start back up so kids can see their friends again (we were actually pretty happy until this afternoon when they realized their break was quite close to ending and they started missing their friends), PTA to start back up so I can start querying for a couple replacements to train up for next year so I can step back and do a little less, and church day to come back ’round so I can talk to the lady in charge of the kitchen so I can bow out for the next year of kitchen duty. See, my resolution this year is simply to take a bit better care of myself. To choose ME this year instead of others more often. Because I haven’t done that in a long time and when I look at myself and pay attention, I see that I am another year older, another 20 pounds heavier, and stressed out beyond belief. So I’m going to just be good to myself this year and see where that takes me. 🙂
Hope you all are making good plans for yourself for the upcoming year. I’ll come ’round and check your blogs and see how you all are doing in the morning. See you then! 🙂
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.
I’ve had 5 days of switched meds. I’m doing pretty well. I’m not dizzy any more. My blood pressure is getting better. The nose spray has improved my stuffiness much better than the old meds were doing. I’ve made myself a little chart to cross off which pain med I took last so I can be sure I’m rotating properly and not just relying on my brain to remember.
Speaking of making my brain not have to remember so much, I’ve also made a better planner so I can keep track of the things I have to do. I’ve been marking pain levels and headaches on that each day as well, so I’ve got a place to keep track of that that’s not the family calendar (which is too crowded to hold that info) or too separate from daily life to remember writing in.
I’ve been taking daily walks the last couple weeks and keeping up on my PT/stretching type stuff. Next week I’m going to try to get back on track with exercising in the mornings and doing my balance ball PT exercises. I’m happy to be in a healthy enough place to do all that. 🙂
“Providence has its appointed hour for everything. We cannot command results, we can only strive.”
Between last night and today I got all the results I need for a while. Here’s what it boils down to:
1. I’m not having seizures.
2. When I got taken off all the pain meds cold turkey, it a) caused rebound headaches and b) made my blood pressure go up. The neurologist should have known that and shouldn’t have done it that way.
3. The antihistamines I’ve been on for the last decade off and on and off and on and off and on…those are NOT GOOD FOR ME. “Why were you taking them?!” said the doctor. “YOU told me to!” said I. “I did this to you?!” said the horrified doctor. I just nodded. “Oh my.” The doctor told me that in the combination of meds I was taking, we can account for the dizziness, the memory lapses, and the blood pressure raising.
4. I need to take better care of myself. Period. I should have been tracking my blood pressure and my headaches and my dizzy spells and I should have gone in to see the doctor as these things were happening, not just after a few weeks or months of them occurring. I need to rest more, too. Yes, yes, I know this. I’m just never convinced that what’s going on is all that bad, so I put things off. Also, resting is for old people and babies. Well, that’s what my brain says, anyway. It’s wrong.
So in the end, here’s what I’m doing:
1. Stopping the antihistamines. Throwing them in the trash. Perhaps stomping on them.
2. Starting a nose spray. Start breathing again. Breathing more and better will relieve some of the dizziness and help me think more clearly. Who knew?
3. Be more careful with my pain meds. Making sure I cycle through them properly instead of only taking the naproxen, even if the rheumatologist says I can do it that way. The neurologist says that way lies the path of the headaches. (Although maybe I shouldn’t listen to any of the doctors, really. Cause where has that gotten me? Thousands of dollars of testing and insanity.)
4. Call the doctor back in two weeks with more blood pressure stats and let him know if my nose spray helps me breathe.
5. (It pains me to say this) RESTING MORE. (I just spent 30 minutes on the couch watching repeats of Downton Abbey. It was glorious.)
So there you have it. Results.
Sorry about last week, y’all. Didn’t mean to scare/worry anyone. I was having some problems with the meds I was on and apparently it wasn’t just the head-poundingness that was a side effect, but the depression as well. I got a call from the neurologists office, apologizing for having not called me back sooner (my message went astray and the doctor was off at a conference). The told me to stop the new meds immediately and they’d call me back this week with info about NEW new meds, et al. So I stopped the old new meds, felt a bit better Saturday, but had to stay home for the weekend to attend a sick boyo. Yesterday I was doing all right, but today I feel weird again. Not so weird as last week weird, just different. So I’m taking things one day at a time and trying to be easier on myself when stuff doesn’t get done on the schedule I set for myself. And now I’m going to go wander off and do something that requires less concentration because talking/typing seems not to be my strong suit today. *waves at the internet*
I had a follow-up appointment with my neurologist today. One of those super-extra-long appointments that you’re not quite expecting. My “migraine’s” had been getting weirder of late, so I had my headache chart all filled out and made a list of the extra special weirdnesses that had occurred recently. She studied my chart, asked quite a few more questions, and told me I’d be having more tests run and be getting a couple new medications.
One of the tests (done today) was just to check that I hadn’t accidentally overdone it on Vitamin D. I was way low previously, so at my last appointment she’d told me to up my dosage on supplements, which I did, following her advice about how much. So we’re just checking on that. The other test will be an EEG because she’s concerned that my weirder episodes aren’t migraines after all, that they might be seizures instead. In the end it doesn’t really matter, as the meds she’s prescribing will take care of both of those things, but seizures require twice the dosage you take for migraines. (The other medicine is one of those migraine stoppers you take once the migraine hits – I used to take those a lot.)
So…I came home and started looking things up on the internet about seizures. It was quite interesting, but I’m not getting worked up about it, especially after all that testing last summer that ended up coming up with nothing new. I’m going to try to chill out and not worry about it. At this point, what can I do, right?