PT, Fish & Tea

Well. Today definitely had some rough patches. I've been having that thing happen again where I wake up and can't stay awake, I have to summon all my willpower to try and prop myself up to a semi-sitting position, or else I fall back asleep so deeply it's like I've lost consciousness, and in fact, I've often debated whether or not I actually do. So that's annoying and been going on for a week or two I think. Usually not a good sign, it's happened in the past when I'm really not doing well, or on my way there.

Worse, usually even if I'm down in the dumps the night before, I wake up okay. I dunno, might it was that I had to answer a call from the doctor right after waking up, pushing me right into overdrive mode. No chiropractor after all this Friday, cancelled, it's a holiday. And I'd realized I had another missed call from them, the transcript of which I didn't understand, so I had to talk to that person too. Which reminds me, I have another phone call, another appointment to make, ugh. Oh, right I'd forgotten. Also an e-mail saying my Internet charge didn't go through, and not a penny more coming in...

So I was grumpy and trying to get ready without stressing out, debating whether to shower or not, that kind of thing. And then I called my Mom for something, she said something that struck a dissonant chord with me (something along the lines about examining what I may have done wrong to bring all this awful stuff on myself) and then I was just fuming, because even though it's totally irrational (unless little kids with cancer have done something wrong and are being punished for it too) of course I've asked myself things like that, more though, like, wondering if this is some kind of karmic payback, in which case there's not a thing I can do but live through this. Still, there's always the guilt, like, I should be able to fix this, I must not be trying hard enough...but you don't need to hear that ish from your own mother...

Anyhow, I was falling apart, feeling like imploding. Like, I'm emotionally, physically, and spiritually so tired, and I feel like I might snap, and where do I turn? But then it was time for my Physical Therapy Evaluation appointment and it was time to pretend to be sane again.

Which turned out to be a good plan. It was just around the corner, so close, and the Physical Therapist was just amazing.

This tiny little thing, cheery, not ridiculously so, but full of energy and on top of her game. Took an extremely thorough history, so much so I realized things I'd never put together before, also gave me some input on the severity of my back problems after looking over the new records/test results I brought with me, and best of all she was interested in the entire picture, not just my problem area, and came up with a plan to try and help with my general well being, not just strengthening my shoulders & stuff, although she wants to wait until I see my Neuro & Cardio docs to have them clear me for some of it. I hope she's not toooo overzealous though, she wants me to start cardio twice a week for 20 minutes...even though I told her I was barely managing 15 minutes and had been planning on re-starting at 10. Well, I will see...I think she's right, I need to do SOME exercise for my well-being. Not just my weight, which continues to go up, but my circulation, muscle tone, and sanity. So that was that...

Tomorrow, mammograph and ultrasound. Yup, they required I throw that first one in with the ultrasound, ick. I've always thought that whole procedure sounded barbaric, but oh well, just another indignity of the female human condition to endure. Besides, if I have cancer maybe I can finally convince the SSA I am sick! No, I'm just kidding, I'm sure I'll be fine. Besides, I feel my case is looking stronger every day...I think maybe something about me has changed, but these days, instead of feeling defensive when I go to the doctor, I find they believe me before I have a chance, they acknowledge that I'm pretty unwell & I've been blessed with a primary care provider that is on top of her game, and willing to do her best to help me, even if it means learning new things, and she even cared enough to suggest I get a cat! Ha! (For those of you that don't know, I had one for 15 years until December of last year, she got sick and passed away, and I'm actually allergic to cats as of a few years ago.) So she suggested a fish, lol. I actually think she's on to something. She convinced me to try doing washing 3 dishes every day, since that's been an issue that's frustrating me. Finally did it today, did 5 actually, lol. Flared my trapz again, badly, but I got to have soup and tea. I was feeling SO tired & stressed, like wired, uncomfortable, so I made some Kava tea, and the stuff is lovely...tastes chocolate-like and relaxes one.Totally got rid of the awful wired feeling. Yay for clean dishes! I so wanted to do more but something is something, right? What kind of fish should I get, any ideas?

Pets, Food, & Professional Patient-ism

Home sweet, disastrously messy home! It's good to be here. Drove out to L.A. to stay with family last night so I could get to my Dr.'s appointment in time, safely, as I never know how I'm going to feel lately in the mornings, and 11am at best is a a time I'm usually okay to get started, not be at an appointment an hour away, hehe. I so did not want to pack up my stuff and drive out there, but I decided it was the safest bet. (And as hard as I tried to focus, I still left my medications behind!)

It was nice to get hugs and see the puppy, adore that little girl! Today, I was having a sad moment and a tear or two snuck out of my eyes, and somehow she knew, and started trying to lick my face! It was so crazy because she sat on my chest and even though I blocked her access to my face with my arm, she kept leaning against it, ready to lick if given the chance...and when I let up, she didn't go for my nose or mouth as usual (yeck, so not down with that, but she's a sneaky one) she went for my cheek right under my eyes and licked the tears right up...I don't know how she knew; it's not like I was sobbing.... Animals are such little blessings. I've been so missing my kitty these last weeks when I've been alone stuck in bed. If I got really desperate and couldn't take it anymore, allergies be damned, I'd pick her up and let her lie on my chest & purr, pet her & hug her. She used to love lying down in the crook of my arm, falling asleep, arching her back against me just like a person, amazing how a being we can barely even communicate with can be so comforting. How amazing it would be to get inside their heads and see how they experience life.

So I for some reason ended up taking Mom with me to my appointment. I dunno, maybe because I was half asleep, or maybe I thought it would help her understand me, or write that darn letter she's putting off for my disability appeal, or be reassured that I'm not a pill junkie and I don't happily take scrips to add to my already annoyingly long list. I think it helped a bit, although I think partly due to her interjection and my foggy brain, when asked what I usually had for breakfast all I could think of was protein & yogurt, lol! This after I've been eating mini quiches for breakfast for most of last week, hoping the protein & fat would agree with my metabolism better than carbs. My doctor ended up suggesting I have oatmeal, and I somehow didn't manage to articulate that that was one of my breakfast staples for so long I'm can hardly stand the thought of it, haha. (W/Cinnamon, butter or coconut oil, and Stevia or Brown Sugar.) No, maybe now that it's going to get cold (I think? You never know these days, with heatwaves in mid-October) I'll begin to find it appetizing again. I've actually been craving Malt-o-Meal.

The truth is, my meals, like the rest of my life, are a hot mess. A month ago it was protein shakes or yogurt with protein & hemp seeds & goji berries, a couple of weeks ago I was practically on a liquid diet, and last week was quiche. Lately it's been yogurt by itself, or cereal (Ugh, a splurge. TJ's version of Cheerios with Coconut Milk tastes like the non-marshmallow bits in Lucky Charms, yum! Plus doesn't mess with my stomach too badly.)

So anyways, the appointment went well. So out of it I kept forgetting I was there to pick up my disability form, too. Doc did take me off the anti-viral due to the anemia, but said I could cut back and taper when I told him I do get worse when I don't take it. Very scary for me. The prospect of being stuck in bed sick alone again, with how filthy this place is already definitely worries me, but must live in the present.

The appointment bummed me out for the day though. I didn't sleep well at all at Mom's due to my neck issues, forgetting meds, & bad pillows, so I guess I didn't have my armor up yet. My doctor is great, I always feel grateful for the validation he gives my illnesses, it's always a relief not to have a doctor/medical professional look at me warily or skeptically, but at the same time I feel SO angry that "the man" doesn't seem to give a damn about all the suffering we are enduring, and doesn't help people like my doctor or myself find a way to fix things and make us well again. Plus, the usual review of symptoms, like I've said, I seemed to have formed some kind of survival mechanism that allows me to negate the bad and focus on the good. Acceptance would be an improvement, I know, and I've come a LONG way there, but I still am not quite at the optimal level of acceptance, haha.

The idea of going home to be alone again with all my frustrations took me down even further, but I managed to take a tiny nap, watch a bunch of shows on the DVR, and then my favorites, some foreign dramas (thank you universe for the internet, globalization, and allowing a culturophile(?!?) like me to watch LIVE streaming TV direct from South America. Hey, my Mom pays for them on Sattelite, but it's a ripoff because they don't even have the same lineup, they pick & choose & custom tailor it for those living abroad, grrr.)

Mom tried to get me to stay, the usual craziness where she acts like it would put her out immensely to have me over for more than a day or two, which is really annoying because I genuinely just want to be at home, and then she doesn't want me to leave! I was tired and tempted, but I have a ANOTHER doctor's appointment tomorrow and can't handle another day on no decent sleep...

So yep, that's me, part-time professional patient. Curious to hear the results of the MMA & Folic Acid tests, and hoping they have some news about my referrals. Can't remember if I mentioned it, but the PA was a doll, had me my referrals before a week was up, but the ahem (!) kind folks at the county insurance plan dealio sent them back with approvals for doctors that don't even take their coverage! 4 Phone calls (and as many touch-tone receptionists) to find out I can't see any of them... I think I found a way to expedite things and get what I need, but I have to call. Calls, calls, calls. I'm grateful, oh so grateful I can manage those now at least...

Well, glorious sleep on comfy pillows calls...wish me luck!

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.

Doctor's Visit, Cimetidine vs. the Immune System

I've been trying to get around to posting since Monday, but it seems like the trip up to L.A. is taking more and more out of me lately.
I seem to spend days recovering my energy.
Anyhow, it went wonderfully. My doctor was a sweetheart, it didn't turn out as expensive as I'd feared, and I came away with a new treatment option.

Unfortunately, the trip up there took a bit out of me as well, plus with brain fog rising back up lately, I just couldn't concentrate on some very interesting info the doctor shared with me on what he thought of XMRV and some tests being done. I remember the info, I just can't seem to make it fit together, so I figure if I come across something related later on, it will probably make sense.

As for the "new" treatment, he suggested I try, of all things, Tagamet, aka cimetidine. Normally used as an antacid, it turns out cimetidine has been used off-label to modulate the immune system, specifically in the treatment of viruses that cause warts. The key word of course, being "viruses". (I can hardly believe I'd never heard this one before!)
But yes, I did some research, and my findings were quite interesting.

So my plan is to get back on the oxymatrine/herbal supplement I was taking (as I've realized that the brain fog began to get worse about the time I stopped it, and with a little prodding from the doc, that the aches & pains & fatigue and feverishness increased around the same time) keep taking the lamivudine (anti-viral commonly used in HIV & Hepatitis which has shown some effectiveness against strains of the Coxsackie B virus) and start the cimetidine. And once again, I will wait. And see.
And I will try and do it patiently. :)

Here are some links regarding Cimetidine and CFS/Viruses/Immune System Function. Also, I was quite interested to see that it has also been used as a treatment for such illnesses as PCOS (Polycystic Ovary Syndrome) Fibroids, Endometriosis, and other "estrogen dominant" disorders, as well as for Interstitial Cystitis (per Wikipedia, source cited). I'm curious to see as well, if it helps control my allergies (being a histamine blocker) and helps my stomach at all. (I also read a tidbit somewhere about it being good to take probiotics with an acid blocking medication for better effectiveness.) Very interesting stuff...


Tagamet on Wikipedia (before you scoff, it has plenty of citations)


Tagamet and CFS

More info on Cimetidine
AboutMeCFS Forum - Tagamet