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!

Beware of Cholesterol-Lowering Meds

Beware of Cholesterol-Lowering Meds

I wonder if statins are effective against the cholesterol in viruses? I thought I remembered reading (possibly posting) an article about that, will have to look later. If so, I wonder if people w/FM (who frequently have CFS as well) could be having some sort of die-off reaction causing the aches and not the CoQ10 problem affecting them more for some reason?

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 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 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 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.

Up & Down

Well. Couldn't sleep till late, and then the phone started ringing at all hours; I was too tired to go get it (the living room is a maze right now, and with how unsteady I am like that, dangerous, lol) but it kept waking me up, so I just ended up sleeping in until I felt I needed it, which turned out to be close to 2pm! Outrageous, I know, but I was really, really tired, I just couldn't unwind last night, after I lost the sleepy.

I woke up (the 4th or 5th time) feeling I might be physically okay, even if emotionally deflated, and half-heartedly tried to steel myself to make all those phone calls. Orthostatic Hypotension everytime I stood up, but only mild, no biggie. Excited to have the honey wheat bread & butter I bought w/my last few bucks (since I didn't have to pay a copay, yay!) I decided to have some toasted along with a cup of my yummy strawberry banana whey protein.

Apparently that was a BAD idea. Or maybe the bad idea was opening my mail? Paperwork, paperwork, bills. Another copy of that bill from the missed appointment (I think that was today?Or yesterday?) and then some good news, a blank copy of the form I'd asked my social worker to fax me earlier in the week (that I didn't get). The good news, being that it said to get it back a date over a week away, not by today or the end of the month, like she'd said before. What a relief. (I think, I still need to call her tomorrow and make sure.) For some reason, my stomach felt queasy looking at all the darn papers in my lap. So sick of forms. Forms, forms, everywhere, it seems. Literally, too because my living room is still waiting to be completely emptied of the files I've been meaning to scan away into digital land. I desperately wanted to be away, outside, in nature somewhere open & uncrowded, and wondered if I could make the walk down the path to the tree-y area at a creek/preserve I like to go to a few minutes away. It's like one of those wild park places. Ducks in the creek, huge trees, some pretty old (they have labels, so one knows) plenty of grass, and most of all the peace that only nature can bring.

And then, the queasiness turned into an actual twisting pain and full-on nausea. I had to move to the couch. Okay, okay, I'm used to stomach problems now, to the point I almost don't notice, I just deal with them, and onwards. So I went to the cupboard and grabbed a couple of ginger candies. They helped with the nausea a bit, but not the pain, ugh. Long story short, the toast didn't stay in me long. I actually lost two pounds between when I woke up and all that was over, mostly liquid, and I felt weak as a kitten, and most definitely not okay anymore. Back to bed I crawled. After a couple of hours, I made myself heat up some broth and drink it down, and that definitely helped. But by then it was evening, so no phone calls, no nature. Nothing done today.

I guess I really need to get some rest! (Well, I did make myself stay in bed catching up on TV shows) but most of all I guess I need not to push. Wait. I don't really have that option!

I also got my file from my attorney today. Wow, it was heavy! A box that felt like it should only have a ream of paper but had 2-3, plus an extra envelope. I couldn't bring myself to open them. I'm so absolutely sick of papers. Especially medically-related. I'd been dying to go over the records, I thought, but once they were here...I just want to scream, NO MORE!
That's not going to work though, is it?

Later today I remembered I have to go get labs done. Ugh. Was a little iffy about it yesterday, but convinced myself it would be no big deal, I was doing better than last weekend & it would be okay, but now I'm dreading losing any of my blood at all, I could use every last drop! Oh well. I have followup appointments to go over them already and I've already learned my lesson on missing appointments, lol.

Oh, jeez, I feel like I'm coming across as so negative, but I swear, it's more sarcasm. I'm pretty okay, so much more level. Just exhausted, but in the moment, which is a comfortable place to be. Ohhh, and I realized, all that anger I was feeling last week? It's PMS! I keep forgetting, but I always feel like that the week before the last year or so. I'm seriously going to go put a reminder for it in my phone, because I keep forgetting, and maybe I won't feel so desperately awful if I know all that seething anger isn't technically coming from me, it's more my accursed hormones. The human body is a trip man! More and more, it seems to me more and more literally like a computer. See what being sick does to you? You end up watching way too much TV and start believing the stuff you see on the Sci-Fi channel! I really need to make a trip to the library soon. (Actually, I have some books I could read in Spanish, classics, I think maybe my brain might be able to handle that now! Yay!)

Oh wow, I'm a dork, I think I just passed up the sleepy. (The sleepy being that perfect state of sleepiness where a girl who has a bit of trouble sleeping, can actually fall asleep quickly.) Now my brain feels twisty and irritated, typed too long, uh oh...must go try and grab it back. Definitely need some rest. Better luck tomorrow.

Wednesday, September 28, 2011


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.

Tuesday, September 27, 2011

Thank Goodness!

My day went better than planned. I felt uncomfortable most of the morning & early afternoon, but nothing like the hell of this past weekend. Maybe knocking myself out did me good. Maybe I needed some rest. Or maybe it was the tons of extra-salty double concentrated broth, the huge doses of B-12, some iron...whatever it was, I am so, so, so grateful. I even managed to eat! I was kind of scared to, but I found some stuff, managed to throw it in a pan & throw in the oven, and ate it, without a post-meal flare up. I tried to take it easy, but I felt rebellious and put together my laptop cart that I picked up a couple of days ago. Fortunately the directions were ridiculous detailed, all the parts painstakingly labelled, and it was easy enough to do sitting on the couch! I did get the base backwards, so the larger part of it was sticking out instead of sliding neatly under my bed, but still. It's really wonderful. I can lie down flat, not have to hold anything on my lower abdomen (which aggravates either my Interstitial Cystitis, Endometriosis, or both.) or have to lie in awkward positions sideways w/the lap desk. The only problem? Nowhere to put my elbows, unless I can jam a pillow or something under them, my upper back still starts to kill. It's still fabulous though, doesn't get all hot, either!

Well. I almost feel guilty for complaining so much, as I've realized there are people who live this non-stop. Sure, I always have some degree of limitation, can't stand long w/o feeling ill, sometimes can't even sit long (except in a recliner, those are recommended for us w/POTS actually, something about not letting your legs get as deconditioned) and I get tired at a rate way ridiculous compared to normal people, but now I totally see why I felt like I was used to POTS and it wasn't as bad now; today was so incredibly bearable compared to this past weekend! Weak as a kitten, chest pain, trouble breathing, strange sensations, the fear of eating, when you add those all on it's a whole different ballgame, so I just wanted to tell anyone out there who has to deal with POTS on this level on a day to day basis, you are totally my heroes. Hang in there.

Ahk, neck is starting to bug even w/the cart, ah, well. A little better is better than nothing! I've also been exploring Accessibility features on Windows this weekend, like, Speech Recognition & Text to Speak. I was SO excited about the Speech Recognition, because my hands are threatening lately (had problems w/my wrists/hands since I was 20, younger even.) but when I finished the practice and went to use it live, it could not understand crap! Text to Speech is mainly meant for the blind, but I constantly have tabs open for stuff I've researched but got too tired to read, so i can't wait to try it on that!

Oh, finally, getting sleepy. Important Dr.'s appt tmo at a UC Clinic. Was reading they may have a Chiropractor! Oh how my TMJ would love that! My atlas is all messed up, and it affects my jaw, which is always cracking and popping out. No, thank goodness, not like dislocated, just a little bit, I just have to wiggle my jaw/mouth around a bit or open & close it, and it crunches back into a more suitable position.

So much to ask for. Referrals, referrals, referrals. Neuro for POTS, labs, Ortho, anything that will help me, physically or mentally, or legally. Hopefully I'll have better luck there than at the last clinic... Wish me luck!

Monday, September 26, 2011

What a weekend!

Seriously. Yesterday, I just ended up sedating myself, I just couldn't take much more of those symptoms. Tight chest, heart palpitations (or something, because my pulse isn't even that high most of the time, higher than my normal, but nothing crazy, like other times) my feet were even going numb and pins & needle-y...lying down! (Usually only happens if I'm, say, sitting at the desktop pc). Another thing I've only had happen while sitting up and when really not well POTS-wise, my head started going cold, this feeling like someone is slowly pouring a thick, ice-cold liquid onto my scalp. I also kept getting cold. Then hot. Then cold. I couldn't even be on here long, it worsens things, even lying down, I have to be practically flat to not feel more miserable. So after attempting some meditation & watching a nice mellow movie, when I still felt miserable, I took a full mg of Xanax (yes, I know, majorly high dose! lol. What can I say, I know it has addictive potential and so I only ever take the minimum...if I didn't how could I still keep it at .25-.50mg all these years? I believe you can get it as high as 5mg pills so...) Thankfully, it did put me out for a bit. Imagine my surprise when I woke up and it was dark? (I'd slept in till after 1pm because I was up most the night trying to fall asleep with my heart pounding away, so really it wasn't more than 3-4 hours I was out.)
When I woke up, what a relief, my chest was relaxed and I felt so much lighter. Only lasted long enough for me to use the bathroom, and get some more broth to drink. (Not only do I not have any food left that doesn't require cooking, which I can't manage right now, but given my experience Saturday night, I really don't WANT to eat makes things so much worse, which is typical w/POTS, ugh.) On the bright side, I could stand to lose about 10 more lbs...
I did come up with an interesting idea, since holding the laptop close enough to type makes my chest feel more uncomfortable and makes me more tired, and keeping distracted is imperative, I decided to try the Speech Recognition Software that now comes standard on Windows PCs. Amazing stuff, but talking made me out of breath, and it requires some training. Did help when I put on a headset. Willing to try more of that later, as it could save my weak wrists & sore shoulders.

Not feeling to horrible now, though my numbing heels are getting annoying, but I'm guessing it's just a matter of time. Have doctor's appointment at a UC clinic tomorrow, was going to try & hold on till then, but I've decided if I get worse again, which I'm seeing is just a matter of time, I will make a trip down the street to the ER and see if I can convince them to give me an IV of saline...hopefully to help give me the strength to drive myself to my appointment tomorrow, and maybe even get them to do some bloodwork to take with me. My last tests showed some type of Anemia, possibly due to the anti-viral I've been taking, but it could be what's making the tachycardia not respond to the beta blockers as well. Ha, funny how I said the tachycardia I was getting used to several days back! I guess as long as it's alone, but not with all this stuff and HAVING to stay lying down! But yes, hoping all that would help make my case and convince them to get me some proper help. Especially since I'm not sure how sharp I'll be for my appointment...Guess I'd better start making lists. I've been taking a break from the job of professional patient, but I guess it's time to start punching the clock again. Alrighty. Maybe if I get off here my feet will reward me with ceasing to feel like they're being poked by electric needles! Ugh. I have to talk to my attorney today. What a pain. Hope I can remember the points I wanted to make, guess I'd better jot those down too.

Sunday, September 25, 2011

Fun times.

Last Weekend

I wonder if this counts as shock?

POTS and Orthostatic Intolerance Recovery: Coping with POTS

Ohhh! This might be the best site I've ever found on POTS!

POTS and Orthostatic Intolerance Recovery: Coping with POTS

Reading about "Autonomic Storms". I wonder if that's what I've been having this past week. Certainly explains my drenched clothes and bedding the other night, the ridiculous amount of sweating last few days, chest pain, palpitations, even the hyperactivity feeling... covers EVERYTHING.

Saturday, September 24, 2011

Oh My.

Thud, thud, thud goes my heart. Actually out of breath, ughh. Monday I had such a good day, but I think the events of the week have been a bit hard on my health.

Just mostly trying to cope with my latest SSDI decision. Lots of anger. Especially after I guess I took too much advantage of my good Monday, I got optimistic, installed a WordPress blog, scanned about 1/4 of my papers I'm filing w/my NeatDesk Scanner Trial, and did a couple loads of laundry, though couldn't fold them, and then Tuesday I was in bed all day, too exhausted to do much, and that's bad for my mood. Can't remember what Wednesday was like,probably a bit devastated to have it thrown in my face yet again that trying to work is overzealous, but Thursday I decided maybe it wasn't the judge's fault, he seemed to have such a sketchy view of my situation, and maybe the problem is that I haven't sufficiently illustrate for them the exact reality. I proceeded to begin writing them a letter, clarifying and presenting evidence for anything they got wrong, or any incorrect assumptions, reiterating that it's not that I'm contradicting myself, but that my condition is constantly fluctuating. Yes, there have been times when I've done things that I "couldn't" do if I was THAT sick, but I'm not THAT sick non-stop, and there have also been times when I've been bed or couch ridden. Many more of the later than the latter... Clarifying things like that I in fact WAS under the care of an Orthopedic Surgeon for my degenerative disc problems see files from Dr. So & So dated xx/xx/xx, and that my Mother does in fact support my case and would write a letter attesting to that fact and describing what she has seen me experience, stuff like that.
I painted a far more thorough picture of my life in the last five years; the monthly battles, the day to day fluctuations, month to month, year to year. The ups and downs. I hadn't realized, but they somehow got the impression that I was laid off from my job and THEN claimed to be sick, having showed no signs of decompensation, prior to the event, which is grossly incorrect. I have a termination letter that actually states that the reason for my termination was excess absences, and I have proof that I was actively seeing doctors trying to find a solution to stay healthy enough to work for months, and that I actually deteriorated further after having surgery 3 months before I stopped working.

Before I knew it, I had 20 pages, which was fabulous. And felt pretty ill even though I'd been in bed the whole time. (That sound thorough enough? lol.) I've often wondered if many people w/POTS have that problem, feeling ill from being on the computer sitting bed? If so, it's likely the sitting up. If not, maybe it's my c-spine problem. All I know is I have an overwhelming urge to lie down completely flat, even a pillow won't be had. Had to be at least part Dysautonmia though, cuz I felt clammy and nauseous, like I was being choked by my heart beating in my throat.

Overdid it I guess. What can I say? I'm struggling to survive. I woke up with a severe case of anxiety and had to do something because I could hardly stand it and I didn't see sleep returning, plus it seemed like an idea. And I knew if I stopped I might not finish.

Yesterday, was rough. More dealing with overwhelming anger. I want to jump kick things and punch stuff. I considered the walls, but I decided I like them the way they are. I tried talking myself into going to the gym for the hydromassager, and maybe while there I could bat my eyes at a staff member and get them to show me how to use the punching bags properly so I didn't feel so stupid wondering if I was doing it wrong, and if maybe they had gloves for rent, but I couldn't. I just felt to fragile for that public and adventure. (Scathing argument with my Mom over boundaries the night before, ending in scathing insult text messages, most of which I avoided reading or didn't even believe, but for some reason fighting with her always makes me feel so damaged. It leaves me wondering how I could possibly be sane and whole with that kind of relationship with her.)

Sometimes, I feel SO damaged, inside and out, and like even though I need people in my life it's hopeless because I end up just walking around with a big huge gaping wound for everyone to see and they all run... I don't resent the world so much for not caring anymore, I've made my peace with that. The social security judge seemed to think if I did things by myself, it was because I must be okay or people would help me. But there's no one to help me, even if I am sick as a dog, if I need to eat, I either have to go get food or make it. Even when my parents/sibling lived 2 blocks away... I've made my peace with that. But sometimes, when I'm dealing with so much it still hurts that if I reach out to my brother for example, no matter how much he says he cares about me and he'll be there and how he knows how I've suffered and how he thinks I'm brave...Well lets put it this way. Yesterday he texted me that if there was anything I needed him to do, like testify at my hearing, to let him know. Well they don't do witnesses, so I said, yes, if you could write a letter, that would be great. Silence. I sent him a couple more texts about it over the next day, and still, silence. Deafening silence. Another gaping hole, lol.

Well, anyhow woke up in better spirits today. Less angst. Hardly any, really. Lazed around watching DVDs to turn in for more, I didn't feel too bad, even though I woke up twice last night drenched in sweat. Viruses raging I guess. (I actually had to change, because I was freezing!)
But mostly ok...did notice I was sweating for no reason if I got up to pick things up, or tried to tidy up a bit. Took a shower cuz I needed it, and then had to lie down, because I couldn't stop sweating. Heart was acting up & on off, but not too bad, so when a new friend I made called to see if I wanted to do something (had to turn him down last night) I said yes, I was feeling okay...
Until... I went to my local box store, I had an internet delivery to pick up, a cart to see if that improves things with the laptop any to help me explore work options, and get some videos next door at the video store. Not a big deal, right? Wrong. Apparently walking to the back of the store and standing there for a couple of minutes, having the guy put the thing in my cart, and walking back to my car was exhausting. Had my movies in under 5 minutes but was starting to sweat standing in line for about 2. Lugged the 15 lb box inside and was weak, had to lie down. Heartrate nutty again. Got better after a 1/2 hour, 45 minutes or so, so I made the can of soup I'd grabbed while, knowing I wouldn't be able to wash dishes, ate, it was delicious. But it flared my heart up again. (Anyone who doesn't have POTS, eating can make it act up.) I realized I probably wouldn't be going out after all, and was dreading making the cancellation, but fortunately they beat me to it! Who says I don't make the best of things? How many girls do you know who appreciate being cancelled on? hehe.
Another of my friend from my old 'hood is close by at a concert, super close. I feel bad, I can't even invite her over, the place is an utter disaster. I contemplated tidying up, hiding stuff behind couches, picking up papers & such, but...considering until a couple of minutes ago I was having to carefully control my breathing, lying down almost flat, because my heart was pounding so hard...doesn't seem like the best idea. Now I just want to lie here and enjoy my movies...So that I shall do!

Friday, September 23, 2011

Off-Label Use of H.I.V. Medications Is Catalyst for More Controversy - NYTimes

Off-Label Use of H.I.V. Medications Is Catalyst for More Controversy - NYTimes.com

Lame. I don't quite buy that those people are on a waiting list, if they are, well maybe they should get priority if they're dying, but to take it away from us completely would be cruel. I am ever so grateful to my doctor for prescribing me anti-virals; before he did I was getting infection after infection, was so weak, and having reactions to antibiotics, POTS flares...I couldn't get it for awhile because I had insurance and couldn't afford the $500 an Rx price tag, so I think maybe that is their problem. But once I lost my insurance I had no problem getting it for free... (Ridculous, but fact.) I've run out a couple of times and start getting sicker right away...If I had kept getting sick I don't know what would have happened to me...

Wednesday, September 21, 2011

Genetic Testing for Health, Disease & Ancestry; DNA Test - 23andMe

Heard about this site the other day again, but didn't realize it was owned by Google co-founder Sergey Brin's wife. I wonder if this could help us find a cure? Apparently his Mom has Parkinson's and he's discovered that he shares a common gene that may cause it (although it's not hereditary?) and plans on "preventing it" by working out the bug in his DNA like he would in a programming...Maybe we need THIS guy working for us!

Genetic Testing for Health, Disease & Ancestry; DNA Test - 23andMe

Tuesday, September 20, 2011

TLC, Giving, & Tx

First, I suppose I should apologize if I've come off a bit bitter, I was going for sarcastic but positive, and somehow it just doesn't come off on the page as well as it does in my head.

I am okay. I've done nothing all year but hang on and try not to rail against it all too much. I just kept telling myself, a few more months till the hearing, a few more months till the decision...I guess the TLC I received helped, as well as what I got to give some here & there, too. I hadn't realized what a huge thing that was, what a piece of me was malnourished, it feels so good to give. Giving makes you feel useful. Yup, sick people need to feel useful, too! Let us help! (But don't get mad if we can't.)Or at least, let us love, yeah, awww!

I'm so grateful, too, that my brain has been working. Not continuously, but still better than in years. I can remember phone numbers again! If I'm really worn out, it gets worse again, like, a few weeks back I spent a couple of weeks at my Mom's and was dying to go home, because my brain was all pretzeled up trying to keep track of my toiletries & medications & things, as well as remember where her kitchen things/toiletries were located and I kept forgetting why I'd walked into rooms, which is infuriating(see, when I say I'm better, it's relative, cuz you'd think having stayed there for roughly half the year altogether I'd know where stuff was, but...I'll take it. I just hope it doesn't bail on me if I have to get a job. I'll beat if up if it does.)

My fatigue, it's hard to say. I feel like it's better, but maybe that's just because I choose not to think of it. I just lie down/recline whenever I feel compelled to, which is often if you're not me, but doesn't seem like a big deal to me, not sure if it's fatigue, or the weird nearly imperceptible signals of my dysautonomia pushing me to do it. The confusion is compounded by the fact that I'm feeling good, great even, the last couple of days, but in honesty, looking back the last month or so have been rough, symptom-wise, and it's not like my "great" is normal. Lots of Tachycardia, I think I ran out of Metoprolol, my beta blocker for the POTS twice this summer, and then I also ran out of the Immune Support supplement I was taking. Mushrooms. I've discovered mushrooms are VERY useful. Not that the anti-viral I am taking doesn't help, I was out of that for a few days and all hell was breaking loose, so that seems to be the keystone in my current treatment, but definitely enhanced by the Immune Balance supplement; the ingredients being Beta Glucans and a cocktail of Reishi, Maitake, and Cordyceps I believe.
I also found a bottle of Cordyceps, and found it seemed to work as well if not better for my immune system, plus I think I've seen my endurance strengthen, perhaps emotionally as well as physically. Wait, I take that back. It's more like it increases my ability to push myself, as, like I've said, I've tried to spruce the place up a bit, and that has caused some actual sweating, which felt amazing, ahh! But I have to admit that I also had more tachycardia flareups, which I got frustrated enough with to stop letting them push me around. Yes, I dared them to mess with me! As long as I'm not completely out of breath from them or getting cold, I try and go about business as usual. Before this laptop found me, I was having major issues with pins and needles and iciness in my feet, even cold sweats & nausea from sitting at the computer, but I even got stubborn with that...but pushing past it made me feel weird though, I almost couldn't sleep, I felt this tense, over-amped feeling like someone gave me meth and my muscles were too tight, breathing too shallow. I suppose it has something to do with the autonomic nervous system's control of epinephrine or something related.

Allergies, are sucking, contrary to what the SSA presumed. (That they must be non-existent because I haven't gotten treatment. MSI doesn't cover allergists, so...) I guess I forgot to mention, too, that I actually was taking 4x the normal dose of antihistamines plus natural supplements & sometimes nasal rinses to keep the excruciating sinus headaches at bay? Well, I decided to cut back on the antihistamines cuz I was running out and I felt wary of side effects at that dose, and then my allergy supplement got discontinued! Inflatrol, lovely enzymes, quercetin, turmeric, etc. I've managed to get new supplements with those in the, but they're not working the same, or my body does agree that a double dose of antihistamines is enough and wants me to make it quadruple again? It's usually like this. When I finally get them under control by about the third week, I have to stop taking the supplements because they thin my blood too much and if I keep taking them that last week, I will menstruate indefinitely, eww, I know. That time of month I'm utterly screwed. Not only do I get angry, senstive, and weepy, but my allergies are awful, my blood pressure drops and I can't have salt to raise it because I will not only bloat up but this will cause excruciating cramps and/or bladder pain. (Because my IC acts up, even if it's been good for weeks, that week, ow. (Another assumption the SSA made.) I also re-started taking an Indole 3 Carbinole supplement because my Endometriosis and other hormonal issues are acting up again, ugh. (I'd started eating soy again, big mistake as far as Endo. Another development, I'm anemic, and finally convinced maybe I need to eat meat again...but I can't bring myself to.)Been wanting to check w/my Dr. to make sure it wasn't the anti-viral causing it, but with all the family chaos in addition to my own turmoil, brokeness, and phone being cut off so I could help feed a family member, I missed my last couple of appointments :( I've been hanging on, but that doesn't mean it hasn't been emotionally overwhelming, and I have no tolerance for stress, so I've been missing a beat or two occasionally...)
Huh, you'd think all that would bum me out, but it doesn't, really, it's just my life. I do my best to try and live in the moment, because my sanity depends on it. So I will keep going to the park to take pictures of the beautiful scenery, play with and photograph my Mom's adorable doggie, get joy & satisfaction from little things, and on my never-ending quest to be a better me. Hopefully a me with more cash, and less weight! (I joined a really cheap new gym, awesome deal, under $20 gets you free tanning(?!?) & hydromassage, & a guest pass. So if I feel crummy I can bribe myself to the gym with a massage, which more than likely increase my circulation enough so I feel better, and then I'm already at the gym! Brilliant, no?)OMG, I think I'm watching Jay Leno without meaning to, and I swore I never would again after the Conan debacle! Gasp! Must go!

...and I guess I'll stick around after all...

So, I think I may have mentioned that if I lost, I would go jump off a bridge. (Or was it suicide-by-cop? Nah, I scrapped that after I lost my Life Insurance, lol.)

Fortunately, thanks to the good year I've had, I've managed to scrounge up a willingness to keep on truckin', as they say. When I think of the what it took to survive before I moved in with my father, and all the hell I've been through since, and the fact that I now have no cushion for my future, I kind of feel a flicker of "please, just let it all be over!" But, then, I've also been entertaining certain ideas.

I do have a certification in Reiki, and am technically able to practice this amazing healing art, per said certficate. The question is, should I? I've been doing good, but I'm not always the most cheery person. Nor am I all that healthy, in any way... Sometimes I'm not even sure if the healing works, though when I recently began to refresh my memory reading my manual, I felt it coming back with a vengeance. (Just for the record, I put on my typing gloves, but my hands still hurt, and my shoulder area just gave a pinched nerve twinge to let me know it wasn't missing out either.)

There's freelancing as a virtual assistant, which part-time I might be able to do, but the stress of dealing with clients might be a bit much, freelance writing, which I've never done, writing a book, which I can't seem to make myself do and I feel if I did I would fall into that obsessive cycle where I get focused on something and do it obsessively, kinda like this typing right now, which although I'm using a laptop and in a recliner is killing me, so it might not be good for my pain levels but...

On the other hand, I was looking at gigs in the classifieds, and found some part-time jobs that I would qualify according to my resume. Those, are kind of overwhelming. My last job was only 20 hours a week, and it was a struggle of pure willpower that I succumbed to and let ruin my health because I didn't feel worthy not working. The memory of the guilt I had at letting my employers believe I was the person on that resume leaves a very nasty taste in my mouth. And I don't believe that would be a sustainable endeavor anyhow.

On the other hand I did the math, and jeezus christ, with a few hundred dollars a month maybe I could help myself, not like I could have if I had thousands of dollars of SSDI backpay and $700/month, but maybe I could manage some more things to make me feel like a regular human being, see a chiropractor, get a massage, treat myself to a movie, make friends w/o worrying about how I'm going to pay for my food/drinks/ticket/gas (part of the reason I quit trying, that and getting ready was exhausting!) get some paid help cleaning, buy myself some slippers...I could be less stressed trying to wrestle a couple of measly hundred bucks into enough to pay for prescriptions and supplements before I run out, not be stuck at home because I have no gas...and now that I've put the bills all in my name, begin to rebuild my credit (and, likely, file for bankruptcy, I can be optimistic, but there's waaayyy too many collection bills for me to pay off working part-time.)

In the past, I've jealously guarded the secret of my disastrous health from my employers until I couldn't. But maybe if I only did that until I was hired it would be less stressful and I would feel less guilty. Maybe if I look at it as a way to make my life easier and not a measure of my dignity and worth, and am not afraid to walk away if my health is suffering... Of course, the problem there is, that only works as long as I have a place to live rent-free, and that's not likely to last. For all I know I could be homeless by X-mas, and I know I can't pay for a place to live. Even if I was lucky enough to talk myself into a $20/hr full-time job, I probably wouldn't last for more than a week or two of willpower-propelled with wrecked credit?

Maybe I can try working part-time, and not think about what will happen in the future, if I will find myself standing on a ledge again, so tired. Or maybe it will give me back the hope to believe that there is a way, if not to get well, to survive without hating my life. I believe I'm here because the part of me that knows what this is all really about knows something I don't and chose for me to be here. The danger is when I wonder if that part of me is right and has a worthy cause, or if maybe it's just for entertainment purposes, cuz this ain't fun and definitely not worth it in THAT case! (OMG, I would take eternal revenge on my higher self if I found out it was putting me through this for kicks!!!!) Fortunately, I've brainwashed myself into believing there's really something all this positivity crap, and so...I just want to not struggle so much for just a little while, maybe that will be enough to replenish my willpower, because right now, my soul feels so battered...more than anything I need a reason to smile. Is that crazy? I think it's crazier that these past years, the few times I've been around people who make me laugh, my face actually hurts because the muscles are so out of use, but it hurts so good...

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?