Answering Some of Your Questions

Ya’ll asked a bunch of questions when you called/emailed/txt’d for my birthday and I should’ve written them down!  If I forgot something, please remind me! It’s taken me a few days on/off to compile the answers. Here’s my last appointment info to bring you up to speed:

Pain:  Yes, my head always hurts, there have only been a very few short periods where my head did NOT hurt.  But there are “different levels of pain.”  I’m just now starting to recognize them and what the signs mean to me and trying to trouble shoot possible causes, etc.  Hydration definitely affects my head pain.  I very scientifically figured out how much water I need to drink everyday.  It sounds crazy but I was actually trying to do it BEFORE “clot” and it made even more sense to verify afterward.  If I’m not drinking enough, I definitely “feel it” but also, if I drink too much.  I don’t make up the rules, I just play the game!  I’m no doctor but I think it’s all “pressure related”… hydration is part of it.  Whenever the pain gets to a certain point, and I don’t have a name for it yet but it’s not “hydration pain,” it affects my vision, my speech, my thinking, etc.  It’s a noticeable change to me and to anyone standing anywhere near me.  You will “see me in pain” OR you will “hear/see a change in my behavior.”  Some of this is relayed to me by family/friends but I know I start having trouble remembering words/phrases, etc but others have shown me stuff I have written during these times and it looks like a kindergartner’s work!i The “not seeing clearly” umm, kinda irritates me. It’s not like glasses would solve my issue because tomorrow I could be seeing clearly again! Like I said about “pressure pain”… sometimes I can feel the pressure/throbbing in my head but sometimes I can also feel it in my neck or pulsing in my hands, etc. I’m weird, I know. I’ve always had a sensitivity to my own heartbeat and now I can definitely feel and even HEAR heartbeat changes in by head!

Bending:  it’s a pain related thing but that paragraph was too long and I lost my place 😉  Sometimes, I can kinda sorta bend to do things like unload the dishwasher.  I have to move slowly, but I can do it.  I’ve totally given up on doing laundry while standing, so you might just catch me sitting in the middle of the laundry room floor (we have front loaders). HOWEVER, I never know if “today is a bending day” until I actually try to bend.  Sometimes, I get partway and just know it’s “NOT a bending day” but sometimes, I’ll be doing stuff and all of a sudden “IT”S NO LONGER A BENDING DAY!”  This often takes my breathe away, buckles my knees and stops me in my tracks.  The best example I can give you is “you just got whacked up side the head!”  Then…. I’m done.  Sometimes, I can go lay down and catch my breath and work back up to moving around but not exerting any effort.  Sometimes, I need drugs.

Cold/Tingly Arm: I think I posted a lot about this last time? Head hurts right now, I’ll try to come back to this later.

Sleeping:  I prop up pillows and try to get comfortable.  USUALLY, I’m propped on right side and can get to sleep.  If my head is bothering me then I can be awakened easily (by wildlife or noises outside (or inside 😉 ).  If my head’s hurting, it takes longer to get comfortable, as long as the pain doesn’t worsen, I can usually get SOME sleep.  If the pain is in one of it’s moods… I try sitting downstairs and/or taking a shower, but there is a fine line between “dealing with the pain” and “bursting into tears” and that’s where pain drugs come in… Actually, if you look at “long-term numbers,” I’d say that I am sleeping better and having fewer severe pain days/nights.  Think about comparing EVERY DAY, or EVERY WEEK, with once a week, or a few times over a few weeks.  But then sometimes, I feel like I take a step back… just like life 😉

Driving:  Driving is not an issue, I have complete memory of how to drive 😉 AND, I’d like to think I was a fairly OK driver before… AND, I’d like to think I’m hyper-diligent now!  If my head is really hurting, I don’t drive… just seems prudent.  So, yah, that does sometimes cause some creative carpooling adjustments but so far, for the past year, we haven’t encountered anything completely unmanageable.  Partially because we have AWESOME neighbors! and Partially because Heather still lives her for the time being and has been incredibly helpful in arranging her class schedules to accommodate “shuttling kids around.”

Blogging: Yes, sometimes I start a post and save a draft and work on it over time. When I actually post it, the date is often whenever I started it and therefore may “suddenly appear” even though you’ve been checking. 🙂 And yes, I guess my posts are shorter if my head hurts. I try not to edit “content” after it’s been emailed out, I’ll add a [NOTE:] but I might edit spelling if it truly affects the meaning at all… if I eventually “see” it or one of you points it out!

Memory:  I forgot.

Just kidding 😉

Memory:  Yes, I obviously have short term memory issues.  At least, I am aware of my short term memory issues, so I hopefully, I am able to articulate that to whomever I might be talking to, so that they can also inform Jeff/kids and/or make arrangements to follow up and help me remember!  I think I am just recently becoming acutely aware of things I have forgotten.  I’m not remembering what I have forgotten, I’m just realizing that there are things I have forgotten (ugh, does that even make sense?)!  I’m still sorting out how I feel about that and how to deal with it!

Math: Let’s not. The best advice I can give you is “Do NOT believe me on numbers or dates, even if I sound convincing. You must get one of ‘them’ to verify!”

Reading/Writing/Grammar:  I’ll include “typing” as well.  I think I am safe to say that I used to be AWESOME at Reading/Writing/Spelling/Grammar/Typing and that’s not an overstatement or bragging.  Now…. I could probably pass a GED… I think, maybe.  Spell check hates me but I assure you that you’d have a hard time following along if I didn’t use it.  For example, I am currently running an experiment, for my own personal insights… before I started typing this sentence, I turned off spell check and started a timer.  If you know me, you know that I used to type well above 180 (ugh, numbers… one-eight-oh) words a minute.  I’m not going to change anything until I am finished and stop timer, then I’ll include the results.

[snip 1st attempt] Reabing/Writeing/Grammar: I’ll include tydeing as well.  I think I’m safe to say that I use to be AWESOME at Reaping/Writing/Sdelling/Grammar/Typeing and thats not an overstatement or praging.  Now… I could brobably bass a GED… I think, maybe.  Sdell check hates me but I assure you that youde bave a bard time following along if I didn’t use it.  For examdle, I am currently running an exberiment, for my own bersonal ingists… defore I started tydeing this sentence, I turned off sdell check and started a timer..  If you know, me, u know that I used to tyde, well above 180 (ugh, numders… one-eight-oh) worps a minute.  I’m not going to cahnge anything, then I’ll inculde the results.  [end snip 1st attempt]

Wow!  That clearly sucked!  It took me 16 minutes to type those two paragraphs!?!?! and that’s not counting the stuff I’ve typed on/off all day, before these two paragraphs, OR this paragraph after them.  And clearly I need spell check!  You’d think that I could just shut my eyes and type what I am thinking?!?!  but nope… I seem to like to add ‘e’ to the end of things??? I do NOT even see that I am doing that! I guess that I’m no where near as good at thinking as I thought I was?!?!  UGH… well, see, now you’ve been part of “the great experiment that is my brain!”

Soooo, now I’m frustrated… I’ll have to see if I can remember any more of your questions and some back later.

But, I do want to thank you for all the calls and emails and txts and thoughts and prayers and support!!!

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