On to more serious things.
Because forgetfulness is part of my brain damage, I recently got a dry erase calendar so I can keep track of when I clean my house. I can't do everything on the same day, and some weeks I can clean more on Thursday, some weeks Friday, some weeks the following Tuesday! So to keep from cleaning the same thing twice in a week...and to make sure things get cleaned more often than once a month!...the calendar was a perfect solution. However...this idea ain't such a bad one! I have gotten to the point where if you come over and want to clean something, I'll gladly get out the proper norwex cloth.
On to more serious things.
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October is AVM Awareness Month! What is ironic is my last doctor called what was in my head some other kind of M--he said it wasn't an arteriovenous malformation, but a cavernous malformation. The doctor who initially told me what ruptured called it a venous malformation, so technically just a VM, because my tangle was considerate and only messed with the veins, not the arteries. But a VM is basically the same thing as an AVM. I did look up Cavernous Malformation and it is also basically the same thing.
After all these years, I'm probably just gonna stick with AVM, since the various Malformations are so similar and my medical bracelet says AVM. And also...if one doctor says "VM" and another doctor says "CM", what's to stop my next doctor from calling it a..."QM"?! I am of the persuasion that I have a malformation so unique that no one can agree on what it's called. Maybe they'll keep studying me and name this new malformation I apparently have a JM! When my neurologist referred me back in July, apparently she didn't tell them anything, because the nurse walked in and said, "Tell me why you're here, because I got nothing!" So we gave her a short-ish history and she took my vitals and scurried off.
The NP came in then, and she took a better history than anyone I've ever seen. She asked probing questions (the first words out of her mouth were, "nosy questions here--" ) and circled back to the same thing multiple times (since I would give partial answers first and then remember more later). It was wonderful knowing I was her sole focus. I didn't feel rushed or like a number in their day. Today's the day! The tank is clean! No, just kidding. This afternoon is the long-awaited appointment! I have no idea what will happen, as the nurse wouldn't tell us anything last week when we called.
So specifically, please pray: --they won't give me a hard time about not wearing a mask --they'll let Bill in the appointment with me --they'll listen and be interested rather than simply slapping some medication on me --I get the 24 hour EEG (or get it scheduled SOON) --I get the neuropsych evaluation (or get it scheduled SOON) During this time of flux, I would be remiss not to praise God for specifics: --I am not bedridden or wheelchair bound --I have supportive family and friends (this one is so huge, y'all!) --one of those said friends is able to let William hang out with them during my appointment (such a load off my mind!) --I know that whatever happens, God has my best interest at heart My brain is such a weirdo. It thinks my hand is relaxed like this! It won't listen to me try to convince it otherwise.
Clenched up in a fist like this, my hand naturally gets sweaty, which makes a little rash on my palm. Ever since I hit puberty, my palms have been sweaty, so this may just be something I have to deal with, but I'm definitely asking the doctor about it. I don't know what he can do, but it's annoying and painful! Last week, my hand stayed in a ball for over 24 hours, then it relaxed and I got a headache for three days. Please pray with me that I don't get a headache through Wednesday! (I only have a super minor one right now.) Between my leg sometimes feeling heavy making it hard to walk, and my hand sometimes spazzing out making it hard to do stuff, and my head sometimes pounding making it hard to think, I feel like locking myself in bed and never getting up again. Sorry to complain. Turns out I'm not perfect after all. T minus 9 days til my appointment. Today I noticed a pattern. This is the third time this has happened, and it seemed vaguely familiar, so I wracked my brain and realized this has happened before. Twice before!
I have a hard day with my side. Lots of numbness, my right leg feeling heavy, my right hand spazzing into a tight little ball. This usually lasts 24 hours or so. Then my balance will come back, my hand will relax, and within an hour I'll get a splitting headache. (Not as bad as when my brain exploded, but worse than a "nagging headache," which I get several times a week now and they don't really interfere with my life.) Anyway, this bad headache comes and plagues me for about 2-3 days. It's not a constant terribleness, but probably a total of 9 hours out of my 15 awake hours, I'm in enough pain for it to interfere with my life. I'm about half way through the blazing headache part of this cycle right now. And before you ask, I'm drinking water and hot tea and diffusing peppermint oil. Already took one nap (woke up in more pain than I went to sleep in). Dark and quiet. Soft music. Nothing has made it better or worse (except the nap), although holding perfectly still does seem to help a little. I'm okay. Not great, but not terrible. My next appointment is in just a couple weeks. Please pray I am articulate enough to communicate to the doctors what my troubles are. Pray they have wisdom to recommend treatments that help, not hurt. Pray I have the strength to get through my days with minimal pain. I know I have friends who consistently lift me up in prayer, and I praise God for each of you.
This week was my birthday. I've also been home alone for more hours than I can remember in recent history! I try to take it easy, so I don't overwhelm myself. And honestly, it's been amazing catching up on so much relaxation. I didn't need my cane at all Thursday or today, and only a little bit yesterday (yesterday was a frustrating day, though).
Next week we are going to Desoto Caverns for my bday, and they are completely wheelchair accessible! I'm so excited! The more I use my wheelchair, the more comfortable I am with it. I still feel conspicuous getting in and out of the car, because I take a few steps there. But...such is the nature of invisible disabilities. I can take a step or two just fine. Walking for 45 minutes, though... So if you've been wondering how I'm doing, I'd say I'm doing really well this week. We're finally finding a rut for the days and usually being in a rut is a bad thing, but it's exactly what I need right now. Praises: -renewed energy -predictable days -after 6 weeks, we finally got a fence around our yard! Prayer requests: -Bill to find a job close to home -my health to stop declining -the hospital to work with us to pay a bill from this spring that insurance refused to cover It's my birthday this week! Someone in my stroke support group said that instead of celebrating "stroke-versaries," he started at zero and is celebrating his birthday on the day he had his stroke (so he said he's turning two this December). In that case, I'm eight weeks younger than my son. I assure you, though, I am much, much older than 15.
Tonight at church was youth night (every fifth Sunday, so four times a year), and this handsome dude led the singing. I'm so thankful he continues to surrender his heart to God's will. Makes it worth all the frustrating times when he was younger of wondering if anything I was teaching was sticking. I praise God that despite my failures, my son is choosing the right path. My prayer is that he continues! So back to my birthday... Fb suggested I make a fundraiser. Well, how about a fundraiser for raising stroke awareness? So anyone who wants to donate to the cause, hit me up. Praises: -a very busy day today that I am exhausted from, but I feel like a regular type of exhausted, not a stroke type of exhausted -the average life span after a stroke is eight years, and I'm still kicking after fifteen! -God continues to mold my son into something He can use Prayer requests: -tomorrow is another busy day (I have Tues-Sat to recover, but I gotta get to Tuesday first!) -some previous scans were not covered by insurance, so pray as Bill negotiates with the hospital Ever since last summer when I had my two setbacks, I have slowly gotten worse. It seems like every month there's something new that's wrong with me. Thankfully my gut and skin are fairly healthy! It's just my brain that's broken.
I have a hard time getting around the house on my own when Bill is at work. I mean, I have a hard time getting around period, but when Bill is home or we are out together, I lean on him. So when he's not around, I wobble and am nervous I'm gonna lose my balance and trip. So he got me this pink cane, which I promptly covered in Hello Kitty stickers! William said, "Those stickers aren't gonna convince anyone you aren't a teenager!" (because I've often been mistaken as William's sister...) I replied, "It's a cane! I don't want to look old!" Every Sunday afternoon when we go out, I always use my wheelchair, and I've got a few stickers left over... |
Who am I, you ask?
In 2006 I had a stroke, and every day my husband encourages me to use my remaining brain cells to the best of my ability. I love to organize, make crafts, and go on adventures (safe ones). I hope that through my blog posts, you will be encouraged to accept and make the best of challenges God throws at your life. Categories
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