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!
Friday, September 30, 2011
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?
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 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.
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.
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
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 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!
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!
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