One Hot (and cold!) Mess

Yesterday was a decent day. Good spirits. Not feeling particularly awful. (Despite persistent IC pain, which I finally knocked out with a Vicodin & some Pyridium.) But I couldn't seem to get moving. I was bored, and feeling well enough to do something, but I didn't feel like doing anything productive; I couldn't even muster the motivation to get myself to do something fun, even after taking the painkiller, which usually perks me up. It was weird.

Today, not so fortunate. I woke up tired. Lethargic. I thought if I rested my energy level would go up, but it wasn't happening. I was going to try and go out anyways to get some supplements I've been meaning to get, but I went to put my makeup on and just felt so tired. I even came up with a novel way to put it on: in bed, using my laptop camera as a mirror! Ugh, my face looked so swollen and fat! Plus the allergies or whatever that were making my eyes puffy seem to have deepened my eye wrinkles. So much for looking 10 years younger. I've been wondering when all this suffering would catch up with me that way, lol. But hey, while I wouldn't recommend it as a sole method for putting on one's makeup, the webcam method made it so I only had to stand in front of the mirror for a few seconds to get a good look and make sure I'd blended okay.

Ah. So got the makeup on. And then I started feeling really sick. (In fact, I'd been about to write a blog earlier, but just couldn't get up the energy to do it sitting up, now that I'm not going to go out, I felt the need to do SOMETHING, so I'm typing sideways from the couch, lol.)

Yup, so really tired. Heart weirdness. No, tired is too mild. EXHAUSTED. Drained. Weak. Then the stomach kicks in. And I start to get cold and feverish all at once. Bundled up and took my temperature. 97.8. Okay, so maybe I'm not crazy feeling chilly? I'm so tired. I really wanted to get out and buy some COQ10, because I was suspecting maybe I felt so tired from not taking my Elavil, so I'd better get some COQ10 in me before I have to start taking it again...but I don't think lack of deep sleep would make me so sick in all the other ways anyhow. Oh well, nothing to do now but lie here like a useless lump, hope my allergies don't kick in too. (Kitty spent the most time in here, and been filing old papers, so sometimes they kick in worse here...but the view is so much nicer, daylight & leaves of trees & pieces of sky...) Ugh, started getting too warm now feeling cold again. Chills? Hate this. Hope your day is going better...

Yesterday...

I'm back in POTS purgatory, and it's partially my fault.

I knew I wasn't free and clear yet...this weekend was almost normal, but only as long as I stayed home resting (though I did manage to shower, and to do my hair, albeit sitting down. Nope, didn't get the grey covered, but I did make the rest look rich and shiny...) mostly.

Yeah, no dishes. I wanted to, but...dishes don't make me happy when I look in the mirror, so they didn't win the toss-up. The shower, that was absolutely necessary, lol.

Fortunately, I don't have problems with showers, at least, not yet. They actually help actually, when I can't get warm. My toes and hands were HA-PPy! I did have a scary moment though, were my head felt kind of funny. That's been happening a bit lately...First time when I was leaving the clinic last week, my head had been feeling that creepy cold feeling, and then when i went outside, I ended up sitting down halfway through the courtyard, to rest for a bit, and my forehead felt kind of numb and tingly, it was bizarre.

Today, I got some cash, so I went out to the poor person's lifesaver; the 99 cents store. Almost didn't make it that far though, because first I went to the grocery store to get some Muscle Milk, and a couple other things. I guess I browsed a little too much though? Well not really...Maybe I drank the Muscle Mlik too fast. I was hot & hungry. The 99 Cents store was practically across the street, but just the process of pulling out of my parking spot (busy shopping center) and driving there wore me out. And on the way there my head started feeling weird again. Well, I was determined, and I recovered a bit after awhile of lying back with my knees scrunched up...and I tried to keep the walking to a minimum but it's hard not to check out every aisle, you never know what they're going to have or not, and when I'm tired I tend to miss things or zone out so I might have to look a couple of times to be sure...One more quick stop across the other street, and I was on on my way home, drenched in sweat. exhausted, and feeling unwell. I remembered halfway (which isn't that far) that I forgot to pick up dinner, I'd promised to treat myself, but all I wanted to do was get home and rest. Not big on food lately anyhow.

It's kind of shocking for me to realize, WOW. I seriously am that weak again. It isn't THAT unusual that this type of outing might tire me out a bit, but...back to the drenched in sweat for no good reason thing, feeling that desperate to lie down...I guess it's a testament to how persistent I can be in my delusional insistence on forgetting the bad and focusing on the good days. Give me a few good days and I start to think maybe I was just being a big baby before. Nah. I was just worse. I'm starting to get that. The bright side is, there's always good days...eventually!

Well I went home and rested a couple hours and felt better. Couldn't decide if I should go get my dinner or not though...between having little energy, nothing appetizing, dirty dishes, wanting to lose weight, and feeling sick more than half the times I eat, I haven't been that big on food lately. But I really love Indian food, I mean ADORE it, and it's sooo cheap, and I didn't have the sense to buy anything yummy to eat at the store earlier...didn't really want to be starving at 10pm and have to figure something out, especially if I didn't feel well. So finally I went. Took the very light trash out in my cart, because I got so tired bringing the bags I had in earlier, and had water to bring in later. But I got tired just dumping the trash!

I felt worse when I got there, didn't know what to expect, either, since the place had moved to a new place, the whole hating to be stared at, and people in Indian restaurants never seem to know what to make of me...but once I stepped in and saw all the rows & rows of foreign food in the grocery section, I was just sad I couldn't stay and browse! The guy at the food counter was so smiley I felt like I had to make the effort to be lively and bubbly. Well, it was a good idea, not only did it make me feel normal for a bit, but it got me a huge portion of food I wanted that they had already put away, AND a double portion of desert, for free!!! But the effort had me sweating bullets. I got to the car (almost stopped to sit at the tables outside) and wanted to lie down but figured I should just hurry up & go. It was unusually challenging to get the car in gear AND the e-brake off for some reason, but I did it. That's when the headache started. Oy. It's been awhile since I had POTS w/headaches, usually that's only when it's really bad and my blood pressure's super low on standing and I almost pass out repeatedly. It was kind of different though, I had this pain and pressure in the middle of my upper forehead. (I think it's the same place that hurts when I get a headrush and almost pass out, feels like it's squeezing my eyes or something.) So weird, not sure I've ever had it sitting before, at least not this sharp, so I'm driving, hoping this doesn't mean I'm about to pass out...but I figured my best bet was to punch it. Home was close and I didn't even have to change lanes at that point, & all was well.

I seriously don't know how people with Dysautonomia who fully pass out do it. When I think of passing out in the shower...bad stuff can happen like that! Some of it painful and bloody, and dangerous to boot. I think if I passed out in the shower, I'd be afraid to take one not sitting for like, ever...

So anyways, ate my food. It was AMAZING. Naan & yellow & white basmati rice, okra, peas & paneer, the most amazing Samosa I've ever tasted, w/a lovely sweet/sour chutney...tart pickled veggies...I only ate half, so plenty for tomorrow's dinner, and I was absolutely stuffed but was dying for my dessert, Gulab Jamun, these amazing little pastries made out of dry milk and soaked in rosewater syrup till they're soggy...sounds weird, but trust me, it's delicious... so I had it and was even more stuffed. So of course, I'm miserable now. Tachycardia, chest pain, have to be lying down, and yup, headache's back. I was good for a bit though!

Oh. I forgot about something. I was feeling annoyed earlier because I wish I could just gulp Gatorade, but all the citric acid in it irritates my stomach (acid reflux) and IC, so no go. So at the 99 Cents Store, I happened upon Bubble Gum Pediatric Electrolyte Replacement drink. (I'd also been thinking yesterday about how much I liked Bubble Gum flavored anti-biotics as a kid, weird, I know) so I had to get some, even though it had citric acid (less than 2%) in the ingredients...I totally expected it to be gross...but it was yummy, and could barely taste the citric acid, it was really light....I'm so going back there later this week! I love my water, but it's hard to drink a lot for some reason, much less with baking soda and salt and sugar in it, ugh!

So those of you that have POTS, try it, maybe you'll like it!

Whacky Hormones Can Rock

I just got back from the pharmacy, after spending hours trying to talk myself into going, it wasn't that bad at all. My thermostat seems a bit off, but it didn't bug me too badly, worse when I got home and had the nerve to take out the bathroom trash & recycling.

I spent most of the drive contemplating my mood. Because it's good! I feel like I took a happy pill or something.

It was a crazy day. I woke up to a text from my friend who "helped" me with my medical records. He said I should've checked them, lol. Umm, yeah, that's why I went to your office to pick them up personally dude. My attorney said they received the files from them, and since he didn't give them to me, I assumed the Neuro files were in there. So I guess the buck really stops at my (former) attorney. (So glad they let me out of my contract with them!) I know I gave them the doctor's info and told them why those were important, and they knew I was having trouble getting them, I told them I was having them sent to another doctor and they'd send them, and when I asked if they got them they said yes. Oh well. What's done is done. I still have a chance to fix it. Of course it might take a couple of more years of my life...

Then my brother did me the huge favor of going to take care of the bill and ask about my paperwork, but something got lost in translation because he didn't even mention he had a check for them! So they ended up being really helpful, turned out they'd had the doc fill out the paperwork weeks ago, and sent that to me and offered to help in any way possible of he hadn't done it to Social Services' satisfaction this time. But then my payment didn't go through on the card I sent lasts night (which is why I sent my brother with the check instead) and I felt like a jerk. (Frustrating, but hey, at least he tried?)

Then on to deal with Social Services, where the Social Worker hadn't called me back all week, despite at least two messages, which is rote there. At this point, I have her supervisor's number handy, so I called her, who proceeded to tell me that she WAS there so she'd have her call me right back. After an hour or so, I got a call back from someone else saying she wasn't there! But he offered to help me, so after getting and faxing back another medical release form (I've faxed one to like 6 different places this week, lol, so that's why I say "another") he was able to assure me that yes, I would be getting my money this weekend. Which is a huge relief, because now I can pay the doctor on Monday, as well as get some gas & food if I don't recover enough to wash some pots and cook up the lovely myriad of legumes & rice I have left. Not that I feel like eating anyhow, lol. It's pretty great, actually, I'm finally losing a decent amount of weight. For the first time in AGES my hip bones are sticking out when I lie down, & I only have to suck in my tummy a litle and the belly's gone! Woooo! 15 more lbs to go! (I had a new supplement I was taking to help with that by regulating my blood sugar and all this stuff, but I'll save that for when I have food.)

Ha, I can't get depressed today. I started trying to feel sorry for myself, but I can't. I feel perfectly calm and serene. Yes, the events of earlier today had me a bit frazzled, but I got over it really fast. It's like I've lost the ability to get upset. So I was trying to figure it out. I'm extremely emotionally and physically worn out, so I was thinking maybe I'm just numb? But no, that feels uncomfortable. I feel inconceivably okay. So I'm thinking, it's GOT to be hormones. The same ones that had me raging angry last week, are now on the other end of the spectrum. I'll take it! (And can we bottle it somehow so I can inject it as needed in the future?) I was actually tempted to go to the Toga party I was invited to tonight, not dressed up or anything, but just to say hi and wish my friend a happy birthday, but nah. I'm not going to push it. I really want to get some of those dishes done, I really have to work on scanning my files because I have to return that thing in the next week (wish I could keep it, already having my files on my computer where I can find them; was amazing for my visit to the new clinic the other day!) and if I possibly can, I'd like to dye my darn hair. (I don't care so much about the roots, but the grey is ridiculous, I swear, all my grey hairs grow straight up for some reason, and the old ones are getting LONG. Hopefully the formula I have will work. Just figures, I've spent half my life trying to get my blah and resistantly dark hair a natural, non-brassy shade of brown, and now all I want to do is get the greys dark, and they don't wanna!) So hoping if I'm careful, get lots of rest and enjoy my temporary serenity, and if my Orthostatic Hypotension & POTS doesn't worsen, pain doesn't get past this level, etc., it will be a far more bearable weekend than I'd bargained for! Wish me luck!

One of those Days...

Where I feel like I'm treading water. I keep getting my head well above, and I keep getting dunked by a well-timed wave. UGH.

I'm bored silly. So restless I could cry. At the same time, I have hardly any energy. But I don't really have the will to live in the Virtual World anymore. I'm out of things to do there!

It's just been such a challenge today. I woke up early. Just completely awake, and tired. And angry. Feeling spiritually damaged. I'm so tired of the people closest to me letting me down. But I don't have much choice but to keep them populating my life. Still, I have the foreboding feeling that if I can't get away from all the hurt and end the cycle of forgive and get hurt again, I will soon become so bitter, angry; damaged, that I will cease to be who I am, I will lose the good, joyful, happy, BEST part of me, forever.

I managed to get back to sleep, and felt a bit better. Not so damaged when I woke up. But lots of things yet to go wrong. Mainly, not getting some money I was counting on, the idea of which had kept me going for days. There was medicine, supplements, and toiletries to get. Some foodstuff. But my doctor is being uncooperative. I hope he's not bent out of shape because I requested my records, thinking maybe I'm going to another doctor? I just wanted my new GP to have them, and a copy for me. Anyhow promises from his staff were left unfulfilled. And this, in turn, most likely means that I will lose certain benefits I was receiving and have to start the process of applying for them over again, meaning I will have no money until, perhaps, the end of the month, if I'm lucky.

I also got the joy of dealing with an annoying pharmacy tech who questioned if I was getting one of my meds at any other pharmacies, even after I said "no". (This is a pharmacy I go to regularly, everyone who works with the public there knows me... and could probably tell you that my habits indicate I'm not one to abuse my medications.) Yes, she was doing her job, but I'm so sick of being suspect of something I would/could never do: abuse the medications I use to manage my conditions. Makes me really miss my old, private doctors. They had my history right at their fingertips and could check my medication history and see that I've been using the same medications, in the same, small amounts, for years now, which wouldn't be possible if I were abusing any of the habituating ones.

Ah. Rant.

Well. I have to go see if I can gather up the energy to go to the store and spend all my remaining cash on kitty kibble. I do love that cat, allergic to her or not. I just wish we could cuddle more! Which I guess, if I stuck to this darn diet, I could. But I keep getting blue, and then I go after the nearest chocolate or ice cream I can find...