Well. Finally finished off the last of the Thanksgiving leftovers today! Just in time to start taking advantage of all my birthday club coupons that began arriving in my e-mail over the weekend! Uh-oh. And I was doing so well with eating healthy and sparingly! Oh well, birthdays only come once a year, and it's not like I'll be getting out much to get stuffed with holiday goodies.
My stomach, thankfully, listened to me and behaved, at least for a couple of days. I think what's helped is that I've started taking a Cat's Claw supplement. Not one of the ones I had recommended to me, way too expensive, at least at the doses recommended on the bottles, just a generic one my Mom got me at the health store for under ten bucks. Their store brand is usually pretty good, so we figured, why not? I think I started out at too high a dose, but hard to say, because that's the dose I was taking at first, then I backed off/forgot to take it for a day and got worse, so I chose to knock it down a capsule, and so far so good, and thank goodness, because the acid reflux and nausea especially, were getting awful. (Ginger wasn't helping, nothing was; and stomach pain to boot.) So the tapering off the anti-viral is going way, way better than I'd expected. I'm down to half a tab daily.
Tomorrow, it's off to the cardiologist. Fingers crossed that she can do something to help me. I had the luxury of choosing from an entire group of cardiologists at this medical group, and her bio mentioned orthostatic hypotension and tachycardia. Hopefully, with her support, I can get them to allow the autonomic testing.
I am SO glad I've had a little bit of a break from all the crazy doctor appointments this past week. This week doesn't seem so bad, especially since two of my 3 appointments are close by. The follow-up with my PCP is the only far one, but that's okay.
Physical therapy has been interesting, though I've only gone once so far besides the evaluation. The Therapist continues to impress me. Although I still think she may be a bit gung-ho in wanting me to start with 20 minutes of cardio, pending the cardiologist's approval. The exercises she gave me were super-easy...except they're not for me, and every time I do them it seems to set off the pain. It really sucks not going more than once a week, especially at the start, because it's hard to get the hang of doing them right. (I'm terribly uncoordinated, couldn't memorize a dance routine to save my life.) But I think she said that after the cardiologist's input, I can ramp it up to two. She also said that my muscle weakness was equivalent to an 80 year old's (so there, relative who practically called me a liar for saying that I feel like an 80 year old sometimes) but that she has seen someone my age that weak maybe weaker, before, once.
So, all is basically well for now. I've volunteered to foster a couple of cats, I just couldn't take the solitude anymore, and I made the mistake of watching one too many cute cat videos, haha. I wasn't keen on having to clean litter again, but I'll manage. They are young & playful and will be fun to have around I think. I figure, my allergies haven't completely gone away since mine's been gone, so hopefully it won't be that much worse. So I'm excited! I'm not having company over on my birthday after all, I hadn't realized it was my brother's 30th birthday, so I had to forgive him for scheduling his birthday celebrations on my actual birthday, but I'm still getting the place cleaned, a great birthday present to myself! I can't afford it, but I don't care! Like my sometimes illogical mother is fond of saying when she's going to spend money on something she can't afford, "I deserve it!". Well I do, right? Okay, well I'd better go to sleep before I start thinking that I idea through. It's not like I'll have enough money for everything I need anyhow, no matter what I spend it on I'll be short. Oy. Story of my life! Okay, well now I'm going to go meditate on abundance!
Showing posts with label day to day life. Show all posts
Showing posts with label day to day life. Show all posts
Monday, November 28, 2011
Saturday, October 22, 2011
Fabulous Article on Pacing
Although I just tried it, and all that happened when I decided to stop after 20 minutes or so to rest, is that I ended up feeling too tired to get back up! Ah well, I did clear up the living room and some of my room. But what I really, really need to do is vacuum...if I want to sleep in that master bedroom. (I sprinkled carpet powder on it a few weeks back, and if I don't vacuum it up first it's likely to make my allergies attack.) Hmm...Little Engine that Could is playing in my head...(I think I can I think I can...) While I attempt to convince my body it wants to get up, here is a great article from the amazing Adrienne Dellwo on Pacing for CFS & FM, which in truth, is a good idea. After all, that's how I got enough dishes done last night to eat breakfast AND lunch in, woohoo! That and a glass of wine...lol. While you're there, check out her articles on Stress, Acceptance, and Grieving for those with FM/CFS! I wish I could have found these articles a couple of years back!
Monday, October 3, 2011
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!
Friday, September 30, 2011
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!
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!
Thursday, September 29, 2011
My Virtual Ramblings - CoQ10, More Viruses, Supplements & Medical Records
Listening to some nice, calm, Tibetean flutes, cuz I really need to relax. I feel so frazzled at nights lately, and my shoulders are killing me. (Not sure which came first but they definitely go together.) Last night was a tough one. Partly I think, because I kinda decided to wean myself off Elavil, which helps me with sleep. I don't know, maybe I'm stupid, because I've tried it before, and it's always interfered with sleep, causing worsening of stuff. But I've been reading for a couple of years now that it inhibits CoQ10 absorption, as does my beta blocker. I'd love to be able to supplement it, have tried in the past, and even though the price has gone down, I'm just kind of going crazy trying to keep up with all the supplements I need. (I'm low in Vitamin D, Iron, B-12...possibly other B's, and bought a B Complex, which was once always my must-have, but it irritates the heck out of my IC (too acidic for my poor bladder lining). Plus there's the ones I take for allergies, to boost my immune system, to help regulate my hormones and smack my Endometriosis back into remission...Whey Protein for my immune system & to make sure I'm getting all the protein I need as a vegetarian... With the vitamin deficiencies, I have been trying to talk myself back into eating meat after 11 years, and it was going well...until I unsuspectingly caught Chef Ramsey on TV at some horrendous butchering warehouse where they specialized in blood, watching a live pig having the blood drained out of it for Blood Sausage, ahhhhhhhh! Back to square one. I'm an ethical vegetarian, I believe we're beyond needing meat to survive, but if my anemia contributes to my getting worse, maybe I personally do need to eat it...Will have tests next week to find out just what kind of anemia it is, because my red blood cells seem to be enlarged, so they're testing for B-12 and folate deficiences, and then, I believe there is a chance it could be caused by the anti-viral I take, which would suck, because it helps. Dammit. I hate being broke. I know I should have had my Infectious Disease specialist monitoring that, but w/o insurance I can't have blood tests done outside of my county, so he can't order me any, and for some reason all the ones I send send him from other docs never seem to make it. I guess I should've tried harder, but I always seem to run out of stamina and just end up so overwhelmed I shut down, have to not think about it for awhile...It always comes back to money. The lack of it causes all kinds of stress and inconvenience and it seems nothing can be done properly. Who knows, if I had some, maybe he'd have been able to see what worked and didn't more easily, I would have been able to follow his recommendations more thoroughly...
Oh well, no point in iffing my life away, it is what it is for now.
But as I was saying, CoQ10 is depleted by this med, so I'm trying once again to cut it out. Besides, I ran out and I'm broke!
Googled & randomly found this aptly named article:Drugs that Steal
It might not all be the drug (I am replacing it with melatonin, and still taking my Soma) but also partly because I was suffering from some of the worst shoulder/neck pain I've had in awhile. (Which reminds me, I'm going to go put my buckwheat neck thingy in the freezer. I don't think it's meant for that, but heat won't do for this.) Absolutely killing me. I guess because I've been spending more time in bed/lying down, and on the laptop. I have to remember to keep my elbows propped on something, which should help my shoulders, but my neck and TMJ are also an issue...my jaw and base of my skull & neck are constantly popping and clicking, it's starting to really bug...I called about the Chiropractor today, but now they're saying I need a referral! When I talked to the PA about it she said to just go next door and make ask for an appointment, so they said they'd check with her and call back. Possibly she just had her fill of all my requests? I don't know, she seemed very genuine and professional...Oy. Well I faxed her a bunch of my medical records, and put a note about the Chiro on there, hopefully she'll okay it. I can't even use the shiatsu massager anymore because the muscles were so knotted up I stayed on it too long the other night trying to get them loosened and made my whole back sore to touch. I need a human touch, lol.
Well, what else? I opened up the dreaded files, I wasn't kidding, there were about 4 reams of paper's worth. I was really surprised to find everything I thought would be in there was NOT. Like ANY records from the Neurologist who evaluated my degenerative disc disease issues, pinched nerve, did the nerve conduction test that objectively proves I have one, and all that MINOR stuff. Worse yet, a friend who works at the clinic that was supposed to send them, who assured me it was taken care of (I even drove 20 minutes when I was feeling like utter crap to pick them up in person, spent an hour chit-chatting with him, and then he tells me he doesn't have them, their in the office, but they were faxed to my attorney the day before, and asks me to come over for dinner later. I went home and didn't make it, was too tired, so now I'm thinking maybe he was just trying to sweet-talk me to get some dessert...people can be so immature!) in the end didn't, or at least that's the conclusion I have to come to, which really, really ticks me off, because I would have found a way to get them over there myself, and it was kind of an important piece of my case, aside from not realizing my Orthopedic Surgeon was not one (which on examining the files, I guess is understandable because it doesn't specify that, just says MD, they didn't have the other records, so why would they think I had real issues with my spine? Ugggghh! Aside from that, there were no records of the second round of PT I had last year from another clinic...Well, at least now I know what I can work on for my appeal.
I also found out that interestingly, I apparently have some other viruses I didn't know about, CMV and HHV6! (To go along with the Echovirus & Coxsackie.) And I've had a low thyroid on more than a couple tests, to go along with the low cortisol, as well as high (at times SUPER high) cholesterol for quite awhile longer than I'd though. (Which I'm wondering if that ties into the CoQ10 issue at all?) I thought I knew what to expect as far as labs, but looking at them all I was actually surprised to find that the picture is of someone who is definitely NOT healthy. I guess it's that whole guilt thing, oh you look fine, you must be fine...
Anyhow, I tired myself out doing all that. My feet & hands are cold, neck hurts, frazzled-tired. I know my Mom would probably get on me for not doing the dishes if I had the energy to do that, but honestly, I didn't think I did have it. I think maybe I just draw on reserves I probably shouldn't because, well, it makes me feel like I am doing something to help myself, to win that damned case so I can get well...It's weird, I don't feel as desperate as I did last week, but I still do feel like there's no other choice. Especially looking at the labs & records from when I was working and I started crashing...wow. I can't have a life like this. With all the time I spent at my Mom's this year, I still didn't see my friends more than a couple of times...it just takes such extraordinary effort. I'm constantly pushing, just to do day-to-day things, even when I was better and I didn't notice as much, it all requires pushing, and will power only goes so far. So it is, tomorrow, I actually have a birthday someone wanted me to spend with them, someone who "likes me a whole lot" but I'll probably stay home watching TV in my pajamas and I don't care anymore, which is so not me. I just have nothing to give. I'll be happy if I can just get out for some air, which I will likely do, up to it or not, because I'm out of my beta blocker (thank goodness it's free!) and though I hardly have any gas, I'm going take the trip anyhow, this weekend will be rough enough without the added fun of my heart going extra crazy!
Ah, but I'm rambling again. I should rename this blog, My Virtual Ramblings, lol.
Oh well, no point in iffing my life away, it is what it is for now.
But as I was saying, CoQ10 is depleted by this med, so I'm trying once again to cut it out. Besides, I ran out and I'm broke!
Googled & randomly found this aptly named article:Drugs that Steal
It might not all be the drug (I am replacing it with melatonin, and still taking my Soma) but also partly because I was suffering from some of the worst shoulder/neck pain I've had in awhile. (Which reminds me, I'm going to go put my buckwheat neck thingy in the freezer. I don't think it's meant for that, but heat won't do for this.) Absolutely killing me. I guess because I've been spending more time in bed/lying down, and on the laptop. I have to remember to keep my elbows propped on something, which should help my shoulders, but my neck and TMJ are also an issue...my jaw and base of my skull & neck are constantly popping and clicking, it's starting to really bug...I called about the Chiropractor today, but now they're saying I need a referral! When I talked to the PA about it she said to just go next door and make ask for an appointment, so they said they'd check with her and call back. Possibly she just had her fill of all my requests? I don't know, she seemed very genuine and professional...Oy. Well I faxed her a bunch of my medical records, and put a note about the Chiro on there, hopefully she'll okay it. I can't even use the shiatsu massager anymore because the muscles were so knotted up I stayed on it too long the other night trying to get them loosened and made my whole back sore to touch. I need a human touch, lol.
Well, what else? I opened up the dreaded files, I wasn't kidding, there were about 4 reams of paper's worth. I was really surprised to find everything I thought would be in there was NOT. Like ANY records from the Neurologist who evaluated my degenerative disc disease issues, pinched nerve, did the nerve conduction test that objectively proves I have one, and all that MINOR stuff. Worse yet, a friend who works at the clinic that was supposed to send them, who assured me it was taken care of (I even drove 20 minutes when I was feeling like utter crap to pick them up in person, spent an hour chit-chatting with him, and then he tells me he doesn't have them, their in the office, but they were faxed to my attorney the day before, and asks me to come over for dinner later. I went home and didn't make it, was too tired, so now I'm thinking maybe he was just trying to sweet-talk me to get some dessert...people can be so immature!) in the end didn't, or at least that's the conclusion I have to come to, which really, really ticks me off, because I would have found a way to get them over there myself, and it was kind of an important piece of my case, aside from not realizing my Orthopedic Surgeon was not one (which on examining the files, I guess is understandable because it doesn't specify that, just says MD, they didn't have the other records, so why would they think I had real issues with my spine? Ugggghh! Aside from that, there were no records of the second round of PT I had last year from another clinic...Well, at least now I know what I can work on for my appeal.
I also found out that interestingly, I apparently have some other viruses I didn't know about, CMV and HHV6! (To go along with the Echovirus & Coxsackie.) And I've had a low thyroid on more than a couple tests, to go along with the low cortisol, as well as high (at times SUPER high) cholesterol for quite awhile longer than I'd though. (Which I'm wondering if that ties into the CoQ10 issue at all?) I thought I knew what to expect as far as labs, but looking at them all I was actually surprised to find that the picture is of someone who is definitely NOT healthy. I guess it's that whole guilt thing, oh you look fine, you must be fine...
Anyhow, I tired myself out doing all that. My feet & hands are cold, neck hurts, frazzled-tired. I know my Mom would probably get on me for not doing the dishes if I had the energy to do that, but honestly, I didn't think I did have it. I think maybe I just draw on reserves I probably shouldn't because, well, it makes me feel like I am doing something to help myself, to win that damned case so I can get well...It's weird, I don't feel as desperate as I did last week, but I still do feel like there's no other choice. Especially looking at the labs & records from when I was working and I started crashing...wow. I can't have a life like this. With all the time I spent at my Mom's this year, I still didn't see my friends more than a couple of times...it just takes such extraordinary effort. I'm constantly pushing, just to do day-to-day things, even when I was better and I didn't notice as much, it all requires pushing, and will power only goes so far. So it is, tomorrow, I actually have a birthday someone wanted me to spend with them, someone who "likes me a whole lot" but I'll probably stay home watching TV in my pajamas and I don't care anymore, which is so not me. I just have nothing to give. I'll be happy if I can just get out for some air, which I will likely do, up to it or not, because I'm out of my beta blocker (thank goodness it's free!) and though I hardly have any gas, I'm going take the trip anyhow, this weekend will be rough enough without the added fun of my heart going extra crazy!
Ah, but I'm rambling again. I should rename this blog, My Virtual Ramblings, lol.
Wednesday, September 28, 2011
Grateful...
Well. I managed to my doctor's visit, early even. Thankfully, it wasn't too hot, because it was a good 15-20 minutes on the freeway, and I didn't have enough gas to risk using the a/c the whole way. As those of you with Dysautonomia may know, our body's thermostat's can be faulty at times, and a even a little heat can make one feel like one is about to internally combust, seriously a strange feeling, like you're burning up from the inside out.
My new county primary care provider clinic may not have a glorious ocean view 5 minutes away like the last one, but it's just as far (or close, depending on how much gas one has!) and I was definitely in for a surprise. It is located on the site of a Rescue Mission type place, shiny and new. To get in, I had to check in with security, was given a visitor's badge, and directed out another door on the other side of the gate and through a lovely courtyard complete with a sculpture, fountain, and artsy chairs I would later be very grateful for. The clinic itself was clean, sunny, nicely furnished, and surprisingly uncrowded. Oh, and it had a/c, unlike some the other clinics I've been to that the county healthcare program covers. Which was a huge, huge relief, cuz that little 200 ft walk in the 78 or so degree warmth had me weak, out of breath, heart racing, basically, one hot mess!
Long story short, the visit was a success! I was told to expect a Nurse Practitioner but got to see a PA instead, haha. I'm sure when they saw my list of meds and ailments they just handed it off, but better for me! She listened and typed away, didn't make me feel defensive, crazy, or like a bother, which is definitely a change from the old clinic by the beach, where the NP looked at me with fear and the PA rushed off as fast as she could. Subsequently, I was able to explain my situation in a coherent manner, and get ALL my needed referrals and tests! Well, not the ANS test, but that wasn't my strategy anyhow, I'm going to try going via a Neuro first. (Although I did ask the Neuro they sent me to for my disc issues, he just took my bp, saw it wasn't too abnormal, and left it at that. This time I guess I will have dissuade that type of behavior, haha. Gawd, this is why I get so tired of seeing doctors; most of them can't or don't help me...I'm a persistent girl, but between nerves and brain fog and a wearing down of stamina fighting for everything like this, there's only so far that will take me.)
If they can't find me someone knowledgeable or willing to help me manage this crap, or won't approve my test, I swear, I will camp out at the county offices, call them every day, find the freakin' director. I need some "objective findings" for my case, if not treatment then so be it, because if I win, I will have MediCare, THEN I can get treatment. So here we go again...
So here we go again. No choice, judging from how sick I got the last week, doing stuff I would do if I were working. (Or maybe it was the mushrooms giving me the stamina to overexert myself, or chlorella causing a herx reaction, either way the balance is too easily tipped)
I already have follow-up appointments for next week. Hopefully I'll have money for gas to get there. I went out on a limb and asked my sibling to float me some cash until Sunday to pay the doctor who is holding my form for social services hostage, lol, for a charge for missing my last appointment. I don't blame them for charging me for it. I meant to cancel it, was in the midst of (I thought) arranging for my Mom, who is struggling since my Father left the country to skip out on alimony, to move. I spent the last of my cash on gas to go get her, because she was down to bare cupboards, and I at least had food, and I knew I wouldn't make it back for the appointment, so I set an alarm on my (disconnected) cell phone to remind myself to call and cancel, but, as I found out yesterday when it went off to remind me, I set it for the wrong MONTH! Brilliant, right? lol. (Didn't remember until after the appointment was over, around 5pm that day, ugh, then was too embarrassed and didn't see the point in calling.) Sibling said yes, to the loan, but then never answered my next message, so hopefully he won't pull a virtual disappearing act (again) come tomorrow, and I can get my form signed and to my Social Worker to give to the appropriate department so they can keep helping me out. Lions and tigers and bears! No, seriously. Medicines, gas, & utilities! G'nite. Or Good Morning, depending on where you are....
So as tired as I am (only not asleep an hour ago because anxiety kicked in, hence the writing) and as much as I'd love to sleep in tomorrow, it's gonna be a fun-filled day. Brothers, doctors, social workers, maybe if I'm on a roll I'll even throw in lawyers. On the bright side, I'm hoping to get hooked up with the chiropractor, I was so overwhelmed with gratitude as I left the clinic, I forgot to try & make an appointment, and my shoulders are numb as I type, despite two different types of mechanical massages. (Stopped by the gym solely to use the hydromassager, not very relaxing but I thought it might calm me down and help with the circulation. I suspect the Dysautonomia might affect me there, too. I was relieved but feeling I dunno how to call it, overstimulated? I was excited to have had everything go so well, but I couldn't turn it off so it was uncomfortable, especially given how tired I was. Anyone else experience that type of thing?) Used my Shiatsu pad as well, OMG that felt good, but I can never get it to stay long enough on my trapezius area. So then I tried the Theracane...What I need is some ice, but left my fabulous shoulder ice pack at my Mom's & had to throw the rest out when the electricity was out during the summer. Okay, I'm rambling...Maybe now I can get some sleep.
My new county primary care provider clinic may not have a glorious ocean view 5 minutes away like the last one, but it's just as far (or close, depending on how much gas one has!) and I was definitely in for a surprise. It is located on the site of a Rescue Mission type place, shiny and new. To get in, I had to check in with security, was given a visitor's badge, and directed out another door on the other side of the gate and through a lovely courtyard complete with a sculpture, fountain, and artsy chairs I would later be very grateful for. The clinic itself was clean, sunny, nicely furnished, and surprisingly uncrowded. Oh, and it had a/c, unlike some the other clinics I've been to that the county healthcare program covers. Which was a huge, huge relief, cuz that little 200 ft walk in the 78 or so degree warmth had me weak, out of breath, heart racing, basically, one hot mess!
Long story short, the visit was a success! I was told to expect a Nurse Practitioner but got to see a PA instead, haha. I'm sure when they saw my list of meds and ailments they just handed it off, but better for me! She listened and typed away, didn't make me feel defensive, crazy, or like a bother, which is definitely a change from the old clinic by the beach, where the NP looked at me with fear and the PA rushed off as fast as she could. Subsequently, I was able to explain my situation in a coherent manner, and get ALL my needed referrals and tests! Well, not the ANS test, but that wasn't my strategy anyhow, I'm going to try going via a Neuro first. (Although I did ask the Neuro they sent me to for my disc issues, he just took my bp, saw it wasn't too abnormal, and left it at that. This time I guess I will have dissuade that type of behavior, haha. Gawd, this is why I get so tired of seeing doctors; most of them can't or don't help me...I'm a persistent girl, but between nerves and brain fog and a wearing down of stamina fighting for everything like this, there's only so far that will take me.)
If they can't find me someone knowledgeable or willing to help me manage this crap, or won't approve my test, I swear, I will camp out at the county offices, call them every day, find the freakin' director. I need some "objective findings" for my case, if not treatment then so be it, because if I win, I will have MediCare, THEN I can get treatment. So here we go again...
So here we go again. No choice, judging from how sick I got the last week, doing stuff I would do if I were working. (Or maybe it was the mushrooms giving me the stamina to overexert myself, or chlorella causing a herx reaction, either way the balance is too easily tipped)
I already have follow-up appointments for next week. Hopefully I'll have money for gas to get there. I went out on a limb and asked my sibling to float me some cash until Sunday to pay the doctor who is holding my form for social services hostage, lol, for a charge for missing my last appointment. I don't blame them for charging me for it. I meant to cancel it, was in the midst of (I thought) arranging for my Mom, who is struggling since my Father left the country to skip out on alimony, to move. I spent the last of my cash on gas to go get her, because she was down to bare cupboards, and I at least had food, and I knew I wouldn't make it back for the appointment, so I set an alarm on my (disconnected) cell phone to remind myself to call and cancel, but, as I found out yesterday when it went off to remind me, I set it for the wrong MONTH! Brilliant, right? lol. (Didn't remember until after the appointment was over, around 5pm that day, ugh, then was too embarrassed and didn't see the point in calling.) Sibling said yes, to the loan, but then never answered my next message, so hopefully he won't pull a virtual disappearing act (again) come tomorrow, and I can get my form signed and to my Social Worker to give to the appropriate department so they can keep helping me out. Lions and tigers and bears! No, seriously. Medicines, gas, & utilities! G'nite. Or Good Morning, depending on where you are....
So as tired as I am (only not asleep an hour ago because anxiety kicked in, hence the writing) and as much as I'd love to sleep in tomorrow, it's gonna be a fun-filled day. Brothers, doctors, social workers, maybe if I'm on a roll I'll even throw in lawyers. On the bright side, I'm hoping to get hooked up with the chiropractor, I was so overwhelmed with gratitude as I left the clinic, I forgot to try & make an appointment, and my shoulders are numb as I type, despite two different types of mechanical massages. (Stopped by the gym solely to use the hydromassager, not very relaxing but I thought it might calm me down and help with the circulation. I suspect the Dysautonomia might affect me there, too. I was relieved but feeling I dunno how to call it, overstimulated? I was excited to have had everything go so well, but I couldn't turn it off so it was uncomfortable, especially given how tired I was. Anyone else experience that type of thing?) Used my Shiatsu pad as well, OMG that felt good, but I can never get it to stay long enough on my trapezius area. So then I tried the Theracane...What I need is some ice, but left my fabulous shoulder ice pack at my Mom's & had to throw the rest out when the electricity was out during the summer. Okay, I'm rambling...Maybe now I can get some sleep.
Tuesday, September 20, 2011
It's been awhile...
...since last I posted. My hearing didn't give me a good feeling. The judge wanted to see my Facebook profile, and I freaked. Most people would say that it pretty much proves how I've been feeling, I sometimes whine...Most of the pics in the last years are of me, by myself, my cat, my Mom's dog, my brother, or scenery at local parks. But there are older pics, the date that shows on them is the date they were uploaded, even if they are 10 years old, and maybe sometimes I tried to make my life seem at least a little interesting and not pathetic, so I may have purposefully lied by ommission or slanted my statuses in a more positive direction. Knowing what I know from past experience with the SSA, I figured they'd take everything they could and twist it to make my case look bad. It's really weird, they call them Judges, but really the SSA Appeal Court Judges are more like attorneys for the government. I expected the SSA to look at my medical files, but I never expected them dissect my life the way they've tried to do!
Suffice it to say, I didn't give them access to Facebook. It just made me so ANGRY, the very idea made me feel violated, really. I've already had to resign myself to the idea that everyone who knows me judges me for not working, but after all, they're opinion of my medical limitations doesn't hinge on my getting thousands of dollars to pay off my hundreds of medical bills and potentially getting well, or at least, better.
So anyhow, I guess I knew they weren't going to approve me, again. Yes, I think I did. I think that's what I've been preparing myself for all summer, mentally. The couple of weeks after the hearing were the worst, and I wouldn't have made it without the support of my Mom. Yes, we still fight, and she still shoots her mouth off and says really hurtful things occasionally (which incidentally, the SSA used against me, apparently something I said to my shrink, they built a whole thing around it jumping to the conclusion that she didn't support my application, amazing!) but the only reason I've made it through this year so well is because she let me stay with her a good part of the year, not continuously, I would desperately need to come home and veg completely for a a couple of weeks a month at least usually, but it just made such a huge difference to have company, someone to hug or get hugged by when my heart was racing incessantly for no known reason, or I was sad, or exhausted to the point of tears, or feeling like I got hit by a truck. Despite our ups and downs, it was so much better than sitting at home, feeling invisible, to tired to make friends, trying not to let it hurt that my father was making a new life and apparently not planning to include me in it at all...I mean, yes it's awkward when your parents are married for almost 40 years and then they're suddenly with someone else, but that's what introduction dinners and such things are for. I guess really, it shouldn't have been a shock, seeing as how during their last separation he lived with a lady and her two daughters, who we never even met, but it was still a shock and hurtful to find out other members of our immediate family got to meet her before we did. And, in a way, a relief when he called me from the airport to let me know he was leaving the country! Yes, this is really my life!
Having the place to myself has been a godsend, so if not for the fact that he didn't make any arrangements for the bills or anything before leaving, and isn't paying the mortgage or HOA fees, it's been lovely, to feel like a grownup again. I used to get sad because it hardly felt like a home here. He made so many promises to me about how I could decorate the place that never materialized (we finally got blinds on the huge living room windows 2 months before he left, in time for his family to come visit) and then I had to beg and plead for help keeping the place in sanitary conditions. But it's like with all that anger and bad energy gone, I started to be able to see all the little things that were within my reach to make it truly a home. I just wish I could afford (physically and financially) to paint it, but the little things I've done have probably been the cause of my increased POTS symptoms. What could I do, it wasn't ALL vanity. It was a psychological crutch, a way to feel in control, making the place mine while I'm here.
So. I got the decision. UNFAVORABLE it read. (Here's another hilarity: apparently I could do work in a WAREHOUSE! LMFAO! How hilarious is that? Nevermind the fact that I've had problems with my hands & wrists since my teens ::cramping up as I type, matter of fact!:: but the Dysautonomia seems to have made me extremely sensitive to temperature changes, so, nice, icy cold or super hot warehouse? Uh uh. Oh, and my being able to take care of a pet cat is suspect, as well as the fact that I admitted going to a TUPPERWARE party for a couple of hours!They also dismissed my pinched nerve/messed up vertebraes cuz they somehow missed that my Orthopaedic Surgeon who had me do months of PT was an Orthopaedic Surgeon, and since I didn't see one it must not have been that severe. I guess the Neurologist and his Nerve Conduction study didn't figure in either.)
Ah, forgive the rant. At this point it just makes me laugh. I wonder how many other people can claim to have been denied Disability on the basis of their (recently deceased) pet cat?
Suffice it to say, I didn't give them access to Facebook. It just made me so ANGRY, the very idea made me feel violated, really. I've already had to resign myself to the idea that everyone who knows me judges me for not working, but after all, they're opinion of my medical limitations doesn't hinge on my getting thousands of dollars to pay off my hundreds of medical bills and potentially getting well, or at least, better.
So anyhow, I guess I knew they weren't going to approve me, again. Yes, I think I did. I think that's what I've been preparing myself for all summer, mentally. The couple of weeks after the hearing were the worst, and I wouldn't have made it without the support of my Mom. Yes, we still fight, and she still shoots her mouth off and says really hurtful things occasionally (which incidentally, the SSA used against me, apparently something I said to my shrink, they built a whole thing around it jumping to the conclusion that she didn't support my application, amazing!) but the only reason I've made it through this year so well is because she let me stay with her a good part of the year, not continuously, I would desperately need to come home and veg completely for a a couple of weeks a month at least usually, but it just made such a huge difference to have company, someone to hug or get hugged by when my heart was racing incessantly for no known reason, or I was sad, or exhausted to the point of tears, or feeling like I got hit by a truck. Despite our ups and downs, it was so much better than sitting at home, feeling invisible, to tired to make friends, trying not to let it hurt that my father was making a new life and apparently not planning to include me in it at all...I mean, yes it's awkward when your parents are married for almost 40 years and then they're suddenly with someone else, but that's what introduction dinners and such things are for. I guess really, it shouldn't have been a shock, seeing as how during their last separation he lived with a lady and her two daughters, who we never even met, but it was still a shock and hurtful to find out other members of our immediate family got to meet her before we did. And, in a way, a relief when he called me from the airport to let me know he was leaving the country! Yes, this is really my life!
Having the place to myself has been a godsend, so if not for the fact that he didn't make any arrangements for the bills or anything before leaving, and isn't paying the mortgage or HOA fees, it's been lovely, to feel like a grownup again. I used to get sad because it hardly felt like a home here. He made so many promises to me about how I could decorate the place that never materialized (we finally got blinds on the huge living room windows 2 months before he left, in time for his family to come visit) and then I had to beg and plead for help keeping the place in sanitary conditions. But it's like with all that anger and bad energy gone, I started to be able to see all the little things that were within my reach to make it truly a home. I just wish I could afford (physically and financially) to paint it, but the little things I've done have probably been the cause of my increased POTS symptoms. What could I do, it wasn't ALL vanity. It was a psychological crutch, a way to feel in control, making the place mine while I'm here.
So. I got the decision. UNFAVORABLE it read. (Here's another hilarity: apparently I could do work in a WAREHOUSE! LMFAO! How hilarious is that? Nevermind the fact that I've had problems with my hands & wrists since my teens ::cramping up as I type, matter of fact!:: but the Dysautonomia seems to have made me extremely sensitive to temperature changes, so, nice, icy cold or super hot warehouse? Uh uh. Oh, and my being able to take care of a pet cat is suspect, as well as the fact that I admitted going to a TUPPERWARE party for a couple of hours!They also dismissed my pinched nerve/messed up vertebraes cuz they somehow missed that my Orthopaedic Surgeon who had me do months of PT was an Orthopaedic Surgeon, and since I didn't see one it must not have been that severe. I guess the Neurologist and his Nerve Conduction study didn't figure in either.)
Ah, forgive the rant. At this point it just makes me laugh. I wonder how many other people can claim to have been denied Disability on the basis of their (recently deceased) pet cat?
Wednesday, September 15, 2010
Frustrated and tired, but hopeful
I've only been up a couple of hours, but my fingers & toes are icy, and my feet have been tingling like crazy. Soon, if I don't get off of this Desktop PC (laptop is unavailable to me at the moment) I'll probably get that creepy feeling like someone is pouring cold water down my scalp. Ickh.
I woke up too early (not as in, like 5 am, but rather early as in, I need 8-9 hours of sleep to be ok, and I got 5-6) for some reason my mind running off on a tangent of suddenly decided to analyze unprocessed information that led me to the conclusion that my Physical Therapist thinks I'm neurotic. I was too out of it to realize it yesterday, but after trying to explain/apologize to her about being late because my state of being suddenly took a nose-dive, I didn't feel like I could drive safely, and I had to persuade and wait for my Dad to get ready and bring me, she asked me if I was seeing a shrink!
"You know, that's known to be a component of that, so it helps". (!?!)
At the time I was taken off guard, happy just to have made it there for my last appointment, and instead of asking her to clarify whether she meant that depression usually becomes a factor in ALL chronic illnesses, or if she was under the mistaken impression that Fibromyalgia, Chronic Fatigue Syndrome, and POTS were all psychological in nature, I told her that the county health insurance "safety net" program I receive doesn't cover mental health. (!)
So annoyed with myself now. And a bit, with her. But more with myself because I could have educated her. Or because I had to? I don't know, lots of mixed feelings. I hate that people are so judgemental. They assume just because I'm capable of getting dressed and putting on makeup and smiling, that I must not be THAT sick?
But then, it's a crazy world, you really can't take people's word for anything these days, so you're almost forced to make a judgement on what evidence you can see...I know I used to, so I can relate. But it still sucks being me, having to cope with stuff like begging my Dad to drive me to an appointment at the last minute because I suddenly feel so exhausted and achy I can't think straight. (Seriously, last time I felt like that, I went anyways, ended up missing the freeway onramp, couldn't decide what detour to take to get back to it, and ended up having to pull over into a parking lot to try and decide what to do, which ended up being to NOT burst into tears of frustration at my lack of brain function and energy, be nice to myself, cancel the appointment, and go home to lie down and not demand anything of myself until I recovered.
Still it makes me so mad though, that Cognitive Dysfunction is SUCH a major symptom of these disorders and even healthcare practitioners know nothing about it.
I've had neurologists and psychiatrists tell me it's Depression, even though research clearly shows the central nervous system is affected, and umm, obviously in the case of POTS & Orthostatic Hypotension, if you're not getting enough blood to the head, that's not going to result in optimum brain function, now is it?
But so is the case with SO MANY of the symptoms of these diseases/illnesses/syndromes, whatever you want to call them. After almost 10 years of research I KNOW for a fact that it's not just me, most others with these illnesses have the same symptoms, what's more, they have been verified by actual, scientific testing...yet only a handful of doctors seem to know this.
(SPECT scans showing blood circulation and brain function for example, studies comparing and equating the Cognitive Dysfunction of CFS with that of Multple Scelerosis...)
But yeah, it's hard not to feel like a nut sometimes with these illnesses. They affect one in such dark insidious ways, affecting how you think, interact with people, socialize...I actually keep to myself these days, because I just don't have the brain power. Just trying to have a conversation with my Mother's neighbor while her kids are running around completely overwhelms me. (Doesn't help that she interrupts herself and me all throughout! lol!) It causes me to do stuff like forget to be polite (thanking someone for dinner & the like, stuff that was second nature to me before I got sick) failing to realize I might return a complement, or that I have spent the entire conversation talking about myself (or alternately not being able to hold onto a thought long enough while someone is talking to have anything to say by the time they're done!) sometimes makes me feel like there's not much of who I was left...but I still hold hope I will get better and then happily quit being auch a hermit and be able to properly interact with people again!
Well, I'm off. Have to go rest up to take my beloved 15-year old cat who can't seem to eat to the vet. Having my feet NOT going numb would help, as would not having to worry about whether I can hold onto her if my Orthostatic Hypotension acts up and I have to grab something in an effort to stay on my feet when I have one of my near-syncope spells...Fun times! Wish me luck!
I woke up too early (not as in, like 5 am, but rather early as in, I need 8-9 hours of sleep to be ok, and I got 5-6) for some reason my mind running off on a tangent of suddenly decided to analyze unprocessed information that led me to the conclusion that my Physical Therapist thinks I'm neurotic. I was too out of it to realize it yesterday, but after trying to explain/apologize to her about being late because my state of being suddenly took a nose-dive, I didn't feel like I could drive safely, and I had to persuade and wait for my Dad to get ready and bring me, she asked me if I was seeing a shrink!
"You know, that's known to be a component of that, so it helps". (!?!)
At the time I was taken off guard, happy just to have made it there for my last appointment, and instead of asking her to clarify whether she meant that depression usually becomes a factor in ALL chronic illnesses, or if she was under the mistaken impression that Fibromyalgia, Chronic Fatigue Syndrome, and POTS were all psychological in nature, I told her that the county health insurance "safety net" program I receive doesn't cover mental health. (!)
So annoyed with myself now. And a bit, with her. But more with myself because I could have educated her. Or because I had to? I don't know, lots of mixed feelings. I hate that people are so judgemental. They assume just because I'm capable of getting dressed and putting on makeup and smiling, that I must not be THAT sick?
But then, it's a crazy world, you really can't take people's word for anything these days, so you're almost forced to make a judgement on what evidence you can see...I know I used to, so I can relate. But it still sucks being me, having to cope with stuff like begging my Dad to drive me to an appointment at the last minute because I suddenly feel so exhausted and achy I can't think straight. (Seriously, last time I felt like that, I went anyways, ended up missing the freeway onramp, couldn't decide what detour to take to get back to it, and ended up having to pull over into a parking lot to try and decide what to do, which ended up being to NOT burst into tears of frustration at my lack of brain function and energy, be nice to myself, cancel the appointment, and go home to lie down and not demand anything of myself until I recovered.
Still it makes me so mad though, that Cognitive Dysfunction is SUCH a major symptom of these disorders and even healthcare practitioners know nothing about it.
I've had neurologists and psychiatrists tell me it's Depression, even though research clearly shows the central nervous system is affected, and umm, obviously in the case of POTS & Orthostatic Hypotension, if you're not getting enough blood to the head, that's not going to result in optimum brain function, now is it?
But so is the case with SO MANY of the symptoms of these diseases/illnesses/syndromes, whatever you want to call them. After almost 10 years of research I KNOW for a fact that it's not just me, most others with these illnesses have the same symptoms, what's more, they have been verified by actual, scientific testing...yet only a handful of doctors seem to know this.
(SPECT scans showing blood circulation and brain function for example, studies comparing and equating the Cognitive Dysfunction of CFS with that of Multple Scelerosis...)
But yeah, it's hard not to feel like a nut sometimes with these illnesses. They affect one in such dark insidious ways, affecting how you think, interact with people, socialize...I actually keep to myself these days, because I just don't have the brain power. Just trying to have a conversation with my Mother's neighbor while her kids are running around completely overwhelms me. (Doesn't help that she interrupts herself and me all throughout! lol!) It causes me to do stuff like forget to be polite (thanking someone for dinner & the like, stuff that was second nature to me before I got sick) failing to realize I might return a complement, or that I have spent the entire conversation talking about myself (or alternately not being able to hold onto a thought long enough while someone is talking to have anything to say by the time they're done!) sometimes makes me feel like there's not much of who I was left...but I still hold hope I will get better and then happily quit being auch a hermit and be able to properly interact with people again!
Well, I'm off. Have to go rest up to take my beloved 15-year old cat who can't seem to eat to the vet. Having my feet NOT going numb would help, as would not having to worry about whether I can hold onto her if my Orthostatic Hypotension acts up and I have to grab something in an effort to stay on my feet when I have one of my near-syncope spells...Fun times! Wish me luck!
Tuesday, September 15, 2009
Apathy and Houseguests
I've been feeling so worn out lately. Not just physically, but spiritually as well. I'm maxed out on Zoloft, but I think I may still be depressed. It's weird, there's no rhyme or reason to it...Friday I had to lie down about a dozen times or more before finally being down for the count. (Dysautonomia I guess, still waiting to find out if it could actually be a Thyroid disorder; my T4 came out low, BUT I was having all the symptoms of HYPER-thyroidism: rapid heartrate, hair falling out 10 times worse than usual, gaining & losing weight rapidly, being too hyper to relax even though i was burnt out, dry skin and nails...I checked and it is possible to have both if you have a Thyroid Disorder.)
I got up this morning, and for the life of me, I did not feel like doing anything. I even skipped my meds, which I usually take the second I get up. I can't handle being completely useless though, so I went & took them, made myself breakfast, & after a break, took a shower. So much to do around the house, but I got overwhelmed just thinking about doing anything, so I decided it would be enough just to get myself past this dip and keep myself from falling further into a funk.
I ended up just feeling stressed out. I thought of driving to the beach, taking an impromptu trip to see my peeps in L.A., but in the end, all I ended up doing is dropping off some books at the library, and picking up a few things at the dollar store.
I had spent some time on the computer, but the ergonomic mouse I borrowed from my Dad sets off my tricep pain, which totally stressed me out, too much fighting going on...fighting to keep my mood from falling, fighting my body wanting to lie down, fighting to ignore the pain and concentrate on the other two, while cajoling myself into doing something productive.
Things seemed a little better after I got home though.
And then I was having a nice conversation with my Dad, and he springs on me that we are going to be having a houseguest next month. I knew that, and I was warily looking forward to it. (I don't know if this person likes me much, and I wasn't sure I'd be able to be a very good hostess...) I LOVE being a hostess, and hardly ever get the chance to do it. But on my own pretty much? This was going to mean getting up at a decent hour every day, making breakfast, cleaning up...Stuff I barely manage for myself, okay, actually, don't manage very well at all...but still, I was willing to try. I'm dying for some company, and have been dying to get to show people around my new county...It gorgeous here and I love sharing it...and unfortunately, haven't gotten the chance to do it yet, really with any of my closest friends or family because a 40 minute drive is just too much for them...(That's another story though.)
Then today I find out it's not going to be a couple days to a week, like I'd assumed...but possibly 2-3 MONTHS! WHAT?!? And no one thought to ask me if I could handle this? WTH? I explained the drawbacks to this for me...I'm one of those people who needs alone time to recharge, even before I was sick. Plus, well, I have a hard time seeing people when I'm feeling really bad...I mean, lately, I've often thought about what I wouldn't give to have someone visit me, especially on days when I'm practically glued to the bed...but unless I was violently ill, I'd have to make sure the place was relatively clean and tidy, and even if I was violently ill, I'd probably put on a fresh pair of PJs and do my makeup, make my hair presentable, if only in a ponytail...
It's this bizzare personality quirk I have a I guess...I don't mind telling people all about my illness, but I don't really want them to see it. It's like a dirty little secret or something. I just feel very self-conscious, most of all when I'm in pain. Then there's all that guilt, too. I don't want people to feel sorry for me. Sympathy, kindness, and consideration would be nice, but pity, no. And I feel weird asking for help, or letting on that I can't handle something that I know shouldn't be a problem for someone my age...I feel like they'll think I'm being a baby and presume I'm lying. (Which has been known to happen!)
So anyways, the idea of having a houseguest for months seems pretty overwhelming. My Dad says there are other alternatives, but now I already feel like the bad guy. One more thing that I should be able to do that I can't.
Well, hopefully he'll handle it tactfully for once. And who knows, it might end up being nice to have company...either way, I'm a little nervous about the whole thing...but I guess it's too late now...just amazes me that none of these problems were taken into account, I wasn't taken into account, or consulted on the matter...
I have GOT to start looking at affordable housing apartment complexes & got on their waiting lists. The second I get my SSDI approved, I'm out. The fewer stressors I have, the better, so if I can be free of my dysfunctional family dynamic, that would be GREAT...
I got up this morning, and for the life of me, I did not feel like doing anything. I even skipped my meds, which I usually take the second I get up. I can't handle being completely useless though, so I went & took them, made myself breakfast, & after a break, took a shower. So much to do around the house, but I got overwhelmed just thinking about doing anything, so I decided it would be enough just to get myself past this dip and keep myself from falling further into a funk.
I ended up just feeling stressed out. I thought of driving to the beach, taking an impromptu trip to see my peeps in L.A., but in the end, all I ended up doing is dropping off some books at the library, and picking up a few things at the dollar store.
I had spent some time on the computer, but the ergonomic mouse I borrowed from my Dad sets off my tricep pain, which totally stressed me out, too much fighting going on...fighting to keep my mood from falling, fighting my body wanting to lie down, fighting to ignore the pain and concentrate on the other two, while cajoling myself into doing something productive.
Things seemed a little better after I got home though.
And then I was having a nice conversation with my Dad, and he springs on me that we are going to be having a houseguest next month. I knew that, and I was warily looking forward to it. (I don't know if this person likes me much, and I wasn't sure I'd be able to be a very good hostess...) I LOVE being a hostess, and hardly ever get the chance to do it. But on my own pretty much? This was going to mean getting up at a decent hour every day, making breakfast, cleaning up...Stuff I barely manage for myself, okay, actually, don't manage very well at all...but still, I was willing to try. I'm dying for some company, and have been dying to get to show people around my new county...It gorgeous here and I love sharing it...and unfortunately, haven't gotten the chance to do it yet, really with any of my closest friends or family because a 40 minute drive is just too much for them...(That's another story though.)
Then today I find out it's not going to be a couple days to a week, like I'd assumed...but possibly 2-3 MONTHS! WHAT?!? And no one thought to ask me if I could handle this? WTH? I explained the drawbacks to this for me...I'm one of those people who needs alone time to recharge, even before I was sick. Plus, well, I have a hard time seeing people when I'm feeling really bad...I mean, lately, I've often thought about what I wouldn't give to have someone visit me, especially on days when I'm practically glued to the bed...but unless I was violently ill, I'd have to make sure the place was relatively clean and tidy, and even if I was violently ill, I'd probably put on a fresh pair of PJs and do my makeup, make my hair presentable, if only in a ponytail...
It's this bizzare personality quirk I have a I guess...I don't mind telling people all about my illness, but I don't really want them to see it. It's like a dirty little secret or something. I just feel very self-conscious, most of all when I'm in pain. Then there's all that guilt, too. I don't want people to feel sorry for me. Sympathy, kindness, and consideration would be nice, but pity, no. And I feel weird asking for help, or letting on that I can't handle something that I know shouldn't be a problem for someone my age...I feel like they'll think I'm being a baby and presume I'm lying. (Which has been known to happen!)
So anyways, the idea of having a houseguest for months seems pretty overwhelming. My Dad says there are other alternatives, but now I already feel like the bad guy. One more thing that I should be able to do that I can't.
Well, hopefully he'll handle it tactfully for once. And who knows, it might end up being nice to have company...either way, I'm a little nervous about the whole thing...but I guess it's too late now...just amazes me that none of these problems were taken into account, I wasn't taken into account, or consulted on the matter...
I have GOT to start looking at affordable housing apartment complexes & got on their waiting lists. The second I get my SSDI approved, I'm out. The fewer stressors I have, the better, so if I can be free of my dysfunctional family dynamic, that would be GREAT...
Subscribe to:
Posts (Atom)