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.
Sorry for all the cross-posting lately if you are someone reading all the blogs, but this is the way things are right now.
Last week I hosted a girls game night with my little group of friends. We never did actually get to the games, but we had a good time eating snacks, drinking wine, and catching up on things. 🙂 It’s a nice group of gals, most of us are some kind of writer or artist. 🙂 We’ll try an actual Gaming game night another time (soon, I hope).
The next night we had a Robert Burns Night with my parents where we read the poetry of Robert Burns (well, Nick did, but that’s because he had the best Scottish accent) and had some traditional Scottish foods (but not haggis).
Saturday I got the bad news about my friend and had a complete meltdown and stayed at home and cried and drank wine and watched movies all day. So cathartic.
Sunday the kids practiced basketball while I fixed up my desk area where the by-hand writing goes on.
It is tidier and makes the writing go better since I’m not scrambling for pens or notebooks. I’ve tidied up my computer so I know where the files I’m currently using are and I’ve set up a profile for everyone else so I can have mine be whatever I want and don’t have to worry about boy eyes on my things and them getting confused by the voice control setup that I’ve been using.
I have been writing this week. Lots of writing and writing related stuff going on. Working on two novels and a few sad poems. I’m enjoying flipping through old notebooks and files of writing from a couple years ago to see what I would’ve written had I not fallen off the writing track. It’s fun putting stories together again and for that I am very very happy with the universe.
Monday I got a call to work, but had stuff to do at home that desperately needed doing, so I said no and got all my stuff done. Tuesday I also got a call, but had to say no because I was taking David to Dallas to have his X-rays done again and to see if he needed another shoe lift or what. He doesn’t need a new shoe lift, he needs surgery. Oh yay. Probably next summer, but we’ll do another set of scans between now and then because it’s more data for the computer to look at and more data means more accuracy and more accuracy means a better outlook and that could mean putting the surgery off another year and another year could mean a stabilizing of the irregular growth, which could lead to no surgery. So we’re waiting.
Wednesday I was all ready for the call to work. I got up, made myself lunch, dressed in subbing clothes….and no call. Of course. So I did laundry, cleaned the kitchen, and let myself have 2 hours of lovely writing time. It was glorious.
Yesterday was my friends funeral. It was a good one, I think. I sat with my friend Dana. They had to add extra chairs on the sides to accomodate all the people. The first person who spoke was a bit conflicted, but Shannon’s sister and dad and regular pastor got up and said some wonderful, understanding things about the nature of depression and the challenges of living with this disease. It was all very heartening and uplifting. I couldn’t stay to go to the graveside service, as I had a PTA meeting. The meeting was very short, which was unusual for us this year. I spent the next couple hours doing work for the next months worth of activities and went to get the kids.
We’re trying out Choremonster.com for our chore rewards website right now. It looked fun and came highly recommended and the kids are excited about it, but I’m finding it very trying. I had to set up each kid separately with separate logins and separate jobs and separate rewards and I have to log back in every single time they finish something to approve it and it is constantly sending me emails telling me to “Hurry quickly!” like I don’t have anything better to do than use this clunky interface to approve each child’s chore. AIE. Plus there’s no calendar to look at or afix things to. You have to just know when things are going to fall on (plus there’s only a few options for days and I need a “every third day” option since I have three people).
Today is finally a regular day. Kids to school, library volunteering, lunch with Nick, an afternoon of chores and errands. *sigh* But I have two kids asleep on the couch and one asleep in my bed. So where am I typing from? Ben’s bed. It’s comfy. I have a dolphin pillow and my old comforter from college and extra blankies, too. Mmm. I might fall asleep here. 🙂
I am starting to think that what I really need is a mental health blog. Or to combine all my little blogs into one big blog so I can stop repeating myself from different angles. Who knows.
A friend of mine committed suicide this weekend. We weren’t close lately, hadn’t been for a couple years, but once upon a time I lent her all my books about depression and gave her my number and talked to her about my experiences with therapy and brain chemicals that just don’t work right . Through her, I lent her husband the book “How to Help When Someone You Love is Depressed” that I’d gotten for my husband ages ago. She still had a few books that hadn’t made it back to me. I guess they never will. These aren’t the thoughts one generally shares, I know, but somehow they are the ones my brain is holding onto right now, instead of blubbering insanely about how sad it all is and how hard I tried to help her and how I failed to keep up and how I regret it and how I am never ever the person I mean to be when it comes to other people and how I should have kept up with her when she went silent. Because once I get started with them, the tears start, they don’t stop.
THIS YEAR. I CAN’T TAKE THIS YEAR.
One of my good friends from junior high died this last year: breast cancer. My ex-boyfriend from high school was accused of sexual misconduct with a student and I can’t quite bring myself to admit that I really do think it’s something he did, because then I’d have to admit out loud to my family and other people how awful he was (in college I had girls email me out of nowhere and ask me to join their therapy group because ….) and they don’t need to hear that. Then there was my mom and the hospital last summer. And another ancient friend’s husband died unexpectedly from pneumonia. Another one’s brother died and I somehow totally missed it and I feel awful about it, but don’t know what to say now. Another friends son had a terrible car accident months ago and is only now walking. And then the husband of a girl here in town that was one of those friends-of-a-friend that you always hear about that you feel like you know even though you’ve actually never met them? The one you’ve heard dozens of stories about? Yeah. Her husband died trying to save someone after a car accident. And now this.
I told my spouse that I needed a Self Care day. He was busy, of course, because we are NEVER not busy these days, and said the wrong thing and that made me cry more. He apologized and said the right things later but I ….well… I am broken at this point. And thanking God or the Universe or Whatever I’m Believing In This Week that I asked the doctor for those anti-depressant, anti-anxiety meds way back in October. Because I don’t know what or who to believe in these days, but SCIENCE seems like a good thing. Quantifiable, you know. I don’t, I just don’t know. Nobody is available on a Saturday to talk, so I’ve been making due with a bunch of movies (The Decoy Bride I need to own and Wild Targets I’m going to rewatch and A Good Woman I’m in the middle of, but it’s kind of bland so far despite good reviews – I’m thinking I just don’t like Scarlet Johanssen) and a bottle of wine and a box of chicken quesadillas.
Thank you for listening and thinking about me. I know we don’t know each other in person, but you mean the world to me, you really do. *big big hugs*
Already! 🙂 They were ALL NORMAL!! Liver function, good cholesterol, bad cholesterol, kidney function, blood count, thyroid, everything else in the universe, all normal.
So we’re doing a happy dance and I don’t have to go back until July. I called the office and asked if there’s any further testing for this so-called “heart condition” and was told just to keep on keeping up with my health journal and if I have anything scary happen chest-pain-wise to seek the nearest emergency room.
All that worry for nothing. I’m terrifically relieved. And now back to trying to fit exercise into the busy schedule. 🙂
Physicals, or check-ups as I like to call them, are so delightful. This time around they had a totally new computer system that wanted to know my height and blood oxygen levels and whether I was left or right handed. Woo hoo. Apparently I’m an inch taller than I think I am. I pointed out that the last time I’d had my height measured I’d been 18 and barefoot, but the nurse did not care. 5 foot 5 is my new height. It’s in the computer so it’s official. Well, okay, then.
Other new things:
– More blood work. Fasting. Tomorrow. Oh yay.
– I need to lose at least 20 pounds. Me: “Yes, I know, but it’s very hard to lose weight when you spend quite a lot of time not being in any condition to exercise properly. Isn’t there anything else we could try?” Doctor: “Since you have a heart condition….” Me: “Wait, what?!”
-I have a heart condition. Undescribed. Awaiting some test results. No big deal. Umm….
– (back to the weight loss woes) “… you can’t have drugs to help that along.” I can, and should: walk, do low-impact exercise, swim, etc, and eat healthy. Which I’m already doing, but I’ll try harder. Maybe I’ll just travel everywhere with whole grain bread and tea and carrots. Why not?
– The doctor checked EVERYTHING, even my swallowing and listening to my throat at rest. I have no idea what that was about; he’s never done it before and frankly at this point I couldn’t handle anything else.
– My left side is way less limber than my right side. (Wherein I realized that my rheumatologist never does range of motion checks any more. Hmm.) Arm, leg, protesting. Which is weird because it’s my less grouchy side, at least the side that generally hurts less.
I think that’s it. More than enough.
Between us, the children and I all managed to catch either the flu or bronchitis or both, so we’re having a low-key holiday. Here’s hoping you all are having a very healthy winter break! See ya in the new year!
-*- Love, Us.
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. 🙂
There really are a lot of quotes out there about being tired of something, but none of them really fit this situation, so no quote today. 😦
I saw the neurologist again this week. There was a horrifically long wait (I was seriously late for a meeting at the kids school), but the neurologist is great because she really does spend all the time with us that we need, so I have no complaint there, really. We talked about my test results (negative), my blood pressure (back to normal) and my (new lack of) headaches. We talked about my issues sleeping (the falling asleep part, not the waking up due to pain), the newly reawakened numbness & tingling I’ve noticed that the rheumatologist is absolutely insistent is not part of the RA, and all the possibilities of further illness/disease/whatever.
She suggested a sleep study (looking for possible sleep apnea), an EMG (because of the weird sensations that don’t line up with anything she can think of), and something else that totally didn’t register…because my mind was alive with shouting “NO NO NO NO NO NO no more tests!” I told her I’d had a sleep study years ago, nerve testing (which apparently is different from an EMG), and just could not right now even think about starting another process of yet more testing. She was very kind and allowed me a two month time frame to think over this decision and see if I could either a) get all better without further intervention on her behalf or b) decide to go along with more testing or c) decide to take a longer break from the neurology department.
So for now I’m thinking about it all, trying to decide my next move.
“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*