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.

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.

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!

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 anything...it 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.

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.