The story thus far: When my ovary exploded the second time they diagnosed me with scary high hypertension and put me on one BP med. It worked, but not enough so my first post-explosion doc added a second drug. My bp still was not what you could call low, but it was low sometimes, which made my second post-explosion doc leary of increasing anything. Fast forward to the spring/early summer of this year and CNP changed BP med because she noticed some edema. I believe the edema was just my usual PMS fluid retention, but I'm not a medical professional. And I don't actually have M on a reliable basis anymore, but I do have the P and the S. I ask you, is that fair? Uh...NO it is not. Anyway, she took me off the original drug and doubled the second one. This was about the same time I was diagnosed mutant and the blood doc put me on all the supplements.
Where before I had had occasional bouts of light-headedness upon standing, suddenly I have huge bouts of debilitating, reeling down the hall, grabbling things to keep from faceplanting, couldn't drink enough to get this drunk even when I was young, lack of balance. The world swims away, and it goes on and on and on for hours. Well, Mr Moth says ten seconds, but it feels like hours. And then I get a quickie hangover that lasts another thirty seconds to a minute, and then I'm fine.
So CNP changed the bp med, and the dizziness almost stopped for a few days, and then crept back in but not as bad, but that initial low dose let my bp go back up into the scary zone, so she doubled it, and the dizzy came back, still not as bad as before, but bad.
So today was my follow up, and apparently I had forgot to mention the headache aspect (because they aren't that bad, and they're fleeting) but then she put me through all these paces and I know what you're up to woman, you're testing to see if I've had a stroke or similar. Can I hold my arms up, and do my eyeballs track the same. Which I can and they did.
But now she wants my carotid arteries ultrasounded and my brain scanned, to check for blocks and leaks.
If that doesn't turn up anything, she's going to adjust the medication back to what it was originally to see if that resets me.
If that doesn't work, she's referring me to a neurologist.
It probably didn't help that she asked, "When this is happening do you have any chest pain or shortness of breath?"
Three nights a week I am in class at dinner time. Two nights a week, so are Mr Moth and Zor. So we have been eating microwavable crap.
Yes, I suppose I could prepare food ahead of time, except that would require extra work, and a level of efficiency and energy I just don't have right now. I haven't hit my stride for this semester yet.
Anyway, pizza, yo.
So the other night I was making a helper. It was even an actual helper, out of a box, instead of my more usual, "I can make that myself" kind of casserole. I doctored it, of course, because I can't seem to not. While it was cooking, Zor said, "That smells amazing! Probably because it's real food."
Whereupon I almost snorted, because box helper isn't real food.
Later I got to thinking about it and decided that when you get older, anything your mother makes probably gets categorized as "real food." To me it's not, because my mother never made it--it was too expensive, and I was really envious of my friends who got to have such extravagances.
I always thought, and even said aloud, "I'm not flexible. In fact, I'm rigid and uncompromising."
Last winter, when Zor moved out temporarily, I realized it's not me. It's life.
With slack in my schedule I suddenly became all about flexiblility, spontanaeity, go with the flow.
Now, not so much again. It's not her fault. Again, it's life. When there is too much to do, there are no empty slots on the schedule. Making any change is like one of those slider puzzles. Remember these?
To move one "thing", you have to move every "thing", and it fast becomes overwhelming. Also in real life, many "things" you might want to move affect other people, such as the dogs' need to use the yard more than once a day, and some "things" can't be moved at all, such as class start times. Sure I could skip class for whatever, but I paid for it and I don't want to.
That's where legit inflexibility comes in. I don't want to miss things I paid for, piss off my doctor by missing appointments, skip classes I paid for, do without sleep. I don't want to, and ain't gonna, just because someone is going to be all, "You're too inflexible."
Yeah, I am. Not by choice, but I am. And that state of affairs will ease some when Zor is out on her own, but I will be in zero big hurry to slot in a bunch of new responsibilities! Or to sluff off the ones I'll still have, either.
I might, however, occasionally be able to slot in an extra cup of coffee with a friend or a photo trip to the duck park or a cemetery walk or even a date night with the old man.
I recently put a bunch of coffee cups in the goodwill box.
When we moved in, five and a half years ago, there were two cups. Well, there were a bunch of 'em, because isn't there always? Cups left behind by the sellers who, due to an unfortunate incident involving the police and tasers, didn't fully complete the moving out process. But two of the left behind cups I kept, because they were perfect, and they soon became my primary coffee cups.
Here is a photo. I normally don't allow cups of liquid to co-surface with my computer hardware, but the cup is empty, I needed better light for photo purposes, and this is a special occasion, so.
I even found one more at goodwill, adopted it, and brought it home.
Why are they perfect? Well first of all, that most important of all qualities, texture. You would think all coffee cups would be more or less the same, especially with regard to texture, but trust me when I say, they aren't. I want them perfectly smooth. No texture!
Then there is size. They need to hold the exact right amount. Enough so that the contents cools, but not too fast.
Shape matters. It needs to fit both my hand and my ceramic coaster. (Ceramic coasters are non-chewupable, or at least my dogs are unwilling to chew them up.) In this photo the coaster is absent because I moved the cup. And the shape of this one I find aesthetically pleasing as well, the slightly roundedness of it, as opposed to many mugs that are plain cylinders.
And they are from the LIBRARY! Where I hardly ever go anymore. The last time I went there it was to look for photos to use as a reference for a class project. I remember the look of vague astonishment on one classmate's face when I whipped out my library books.
Getting back to the cups, I found a third one at goodwill and bought it, and if I find more, they are mine, mine, mine.
However, there is one teensy imperfection, namely that the light color is developing progressive staining.
Once upon a time people used to talk to each other about these things. "How do you get stains off your coffee cups?" "Oh, I use a denture tablet and a toothbrush."
I've always wanted to try that denture tablet trick, but I don't have dentures and it seems silly to buy some tablets just to clean three cups. So I'll probably try a magic eraser because they take super glue off eyeglass lenses, yo. A coffee stain should be no problem. But if for some bizarre reason that doesn't work, I guess I'll just google it.
Sigh. I miss when people went to the library and talked to each other--although not generally at the same time. But at least I have LJ and my (almost) perfect coffee cups to keep me company.
P.S., Just this past week I saw a woman and her little boy trudging across the school parking lot, their arms laden with library books. (It's right across the street.) Which made me happy until I realized I no longer live in a world where I could offer them a ride. Add that to the list of things I miss, sigh.
Nothing much going on today. BP is stabilizing. I wish the woozies would go away.
I took Zor to her class and then hit the Kroger on the south side, which is closer to the school. It's been so long since I shopped down there, I had culture shock. I didn't much like that about myself, either. But that is not the main thing that made me not like myself today.
What I also didn't care for was the clerk asking me for my Kroger Plus Card to swipe for the person in front of me. That wouldn't have been a problem, except I wore out my Kroger Plus Card some time ago, and the manager at a different store switched me (us) to the Alternative ID system, which uses my (our) unlisted phone number. So I replied, "I don't have a card, I have an alternative ID." And the clerk said, "Just tell it to me and I'll key it in."
Mind you, I'm two cart lengths away, so I can't just quietly tell him my unlisted phone number. I would have to like, shout it across the store. So I said, "But it's my phone number." To which he gestured exasperatedly and said, "Yes, yes, just tell it to me so I can key it in."
Whereupon I couldn't think of what to say next, so I caved like an ancient mine, and shouted my unlisted phone number across the store. And the clerk went on and on about how I got extra points for free, blah blah blah.
But I didn't want extra points. I wanted--want--people to hear me when I'm saying no, even if I'm not very good at it.
And that is the main reason I don't like myself much today.
So for next time, "NO THANK YOU. IT'S UNLISTED."
I need to learn to do "NO" like Nancy did no at 20 minutes and 50 seconds into this clip:
My PCP never did call back, but I called them several times. Different people kept answering the phone, so I suspect there is some kind of chaos going on there. Either the Office Manager quit or is on vacation or etc., because trust me when I say this is not the usual thing that goes on when I need something, and I am trying to be (a patient) patient.
However yesterday when my blood pressure hit 183/110, I did start to get a little crabby about the whole deal. A reading that high is in the realm of a hypertensive crisis, except that I had no other symptoms to go with the numbers.* Still scary though. Pretty sure fear isn't all that good for BP, just guessing. And the numbers came down again pretty quickly and settled back into the "merely too damn high" range of 150/90.
I did eventually get hold of someone who found T's (the PCP, aka Primary Care Person, aka Nurse Practitioner) new orders for me, so she had received my messages, and had responded, I just didn't know it. She had in fact called in a new prescription, and the pharmacy hadn't notified me of that either.
GRUMP, GRUMP, GRUMP.
Anyway, my new BP med has been raised, and after one increased dose I feel much better. This is a tricky balancing act--literally, because we're trying to find the dose that will control my BP without causing the constant and debilitating episodes of light-headedness.
I was causing them dizzy spells, but that sounds so melodramatic, and I learned it is not technically correct. Dizzy means things are spinning, and that never happened. I actually feel more tipsy. Now there's a word! Less unwieldy than "episode of light-headedness" and more accurate than "dizzy spell". Tipsy does make it sound like I might be drunk, which is exactly how I feel when it happens.
And you may or may not know, I don't drink (or use recreational pharmaceuticals). And the reason I don't is not my deep and abiding respect for the drug laws, because I have no such value. I think drug laws are ridiculous in a society where we still sell cigarettes and beer. I don't use these things because I hate how they make me feel. In other words, I don't wanna feel drunk! Or high, or stoned, or dizzy, or light-headed, or tipsy. No thank you!
The irony of one of the few people who doesn't want to feel that way feeling that way is not lost on me.
And now it is time to get this day begun.
* Said symptoms might have included headache, shortness of breath, nosebleed, anxiety, confusion, chest pain, and probably some others. Contrary-wise, when my blood pressure is elevated I feel damn good, mentally, but crappy physically. Keeping it down though, I start to think slower, dis-remember things, but better overall physically. Again, it's a balancing act.
And yes, I know they say high blood pressure has no symptoms. But I do experience a general feeling of crappiness when it gets really high. Which is actually kind of convenient, because I know when to test myself.
Chronic pain and a tendency toward sensory overload do not play well together--I'm already in overload before I'm even out of bed. I so want to go back to bed, but bed hurts.
Yesterday was the second day of school. Part-time is good. I would never survive full-time in my current state. And today I have no class at all. Assignments to work on at home, sure, but not butt-on-campus time. I can drop Zor off and come home. Go back and retrieve her in the afternoon, and possibly scoop up my prescriptions.
Yesterday was a busy phone day. It rang six times during dinner, I shit you not. I felt like I needed to keep checking to see who it was because I called my PCP yesterday because the new BP med is not working very enthusiastically. This isn't a surprise because she started me on a low dose. However, and as I keep forgetting, she is not in the office on Tuesdays, so I'm waiting to see if she's going to call in something else before I pick up. Fewer trips are always better than more.
When I got home last night I learned that everyone and everyone's friends and relations had called during the three hours I was gone, and wanted/needed me to call them back. Not the PCP or the pharmacy though. Then the pharmacy did call, but it was only to harass me yet again about having my meds delivered by mail.
Uh, for the thousandth time, no. I don't want medication sitting on my porch for hours at a time because nobody's home, and also the one drug we do have sent by mail doesn't come reliably. It comes eventually, after repeated phone calls. This is annoying bullshit nobody needs. It is not a convenience, morons, it is what we used to call a hassle.
In the end, the only person I called back was my mom because, well, she's my mom. But I kind of didn't even want to do that, because what I felt like I needed was to zone out in front of some sit-com reruns for an hour or so and then go to bed. We had a nice chat, but sometimes I need to be not-stimulated. Also, it meant I stayed up too late and now I am wiped out.
Today I need to work on assignments and not be constantly on the phone again, but something--call it the voice of experience--tells me that isn't going to happen, either.
Confession. I watched exactly three ice bucket challenge videos. They enraged me.
How dare anyone presume to tell anyone which charity to donate to, is what I thought my problem was. Seemed like a logical objection, since I had the exact same issue with employer-coerced donations some years ago--although I don't believe in logic, which is a topic perhaps for another day. But the whole, "You have to donate or be shamed before the entire internet" deal, well...I find it objectionable.
Then last night I was talking to a friend about how I had my tubes tied because I can't stand the sound of a baby crying, and that I think this is because my first husband kicked my ass every time I couldn't stop a baby from crying. We had twins, and one of them cried all the time. That's when I remembered.
See, he would also kick my ass if the house wasn't clean to his standards, so there came a day when I was doing a last minute mopping before he got home, and The One That Cried started crying, so I set the mop down and went to get her, and as usual, I couldn't get her soothed. Probably she picked up on my terror, and I'm sure that didn't help. I put her in the wind-up baby swing, which was the only thing that ever worked, only this time it didn't. Then I heard tires in the gravel driveway and froze.
He came in, heard the screaming, picked up the bucket of dirty mopwater, and upended it over my head. There followed an asskicking, abbreviated by the intervention of Uncle Donny, who lived next door and came over and made him quit because he, Donny, was trying to sleep.
I saw in the paper that Uncle Donny died this month. That made me sad.
So I have been deep in the jungle of PTSD Triggerland all this week or so and didn't know why--had forgot the bucket incident. It did happen close to thirty years ago, and that's a long time to remember a single incident in a long list of incidents. Yes, I know I should "just get over it," and if I knew how, I would.
Anyway, ice bucket challenge? Not happening, not even if a hundred thousand people nominate me. And even if I could scrape up a donation right now, I think I'd send it to the women's shelter that helped me escape.
If that makes me a bitch, feel free to hand at least half the blame to the rat bastard that made me this way.
Now that I've remembered it, I can still smell that mopwater.
So. Moving on...
ALS stands for amyotrophic lateral sclerosis, or motor neurone disease (in England), also often called Lou Gehrig's Disease. Gehrig is arguably no longer the most famous sufferer; Stephen Hawking probably is, although his case is not typical because he has survived so long. ALS is a terrible disease that more usually kills people in a horrifying way that is somehow both far too fast and lingeringly slow. If you'd like to learn more, become more aware, and/or make a donation to a worthy cause, go thee hence: ALS Association.
Really, you don't have to dump water over your head. You could just send money. If you're so inclined.
First, my primary care provider is a Certified Nurse Practitioner and not an M.D. I usually don't mention that because I don't feel like defending her. She's kind, which is of vital importance to me, and she is very knowledgeable about conditions I have such as diabetes and high blood pressure. She also used to be the CNP for the blood expert doc, so she knows more about the MTHFR dealie than most regular physicians. And that is all the defending I am willing to do right there. I only mention her actual title because I don't know what to call her when I talk about her. Just calling her Nurse seems goofy, CNP or PCP seem unwieldy, Everyone at her office calls her by her given name, but that would be confusing to everyone who doesn't know who Trecia is. So if I lapse and call her my doc (or any form thereof) I'm not trying to be deceitful, I just need a word I don't have.
Anyway, I went to see Trecia yesterday. It was a fasting visit for bloodwork, and since the appointment was at three in the afternoon, it was a long fast. But I drank lots of water to plump up my veins, and when I got there my back teeth were floating, so I asked could I go pee, and the nurse (Salle, not Trecia) said yes so I did, and then twenty minutes later of course they wanted pee I no longer had.
So the fast went on while I drank more water and waited, but the upside was, Salle was in a story telling mood, and I got to hear about a patient she had once who had been mauled by her own dog in a fight over a dropped pork chop, and also about the blood expert doc. That one almost made me cry. I expect an altered version of it will turn up in a work of fiction at some point during my life.
Eventually I emerged with a new blood pressure prescription. I have been struggling so with the MTHFR (supplement) protocol, but some of my symptoms predate the protocol, and the last thing anyone changed before that was to drop one bp med and double the other in an attempt to address some edema in my legs and feet. It not only didn't work, but my bp has been less stable, and I have felt increasingly like crap including huge reeling dizzy spells.
Changing two things close together is never cool because you can't be sure what caused anything and I have wasted spent most of my summer sorting side effects.