Wednesday, April 28, 2010

Pissed-off Ticker Syndrome

Stole that from a post on Potsy Girl's Facebook.

I'm trying so hard to stay/get calm right now. I'm so annoyed. My heart's been going nuts. Mostly it's pounding. I took my BP a few times and my pulse wasn't too bad at first, but then I did it purposely when I felt worse, and my heart rate went from 88 to 118. Worse, it feels like it's having trouble beating and it's like, struggling to squeeze. And a brand new thing; my fingers and toes feel strangely heavy, sometimes tingly, like there's too much blood in them. I looked at my fingers & to hands and the tips are a dark mottled reddish-purple. Even my hands were all dark & splotchy for a bit.

I think I figured it out though. I think what set it off is a multi-vitamin my Mom gave me: it has chromium in it. I've never done well w/chromium, since I was a teen it messed with my heart. Grrr. My fingers feel so uncomfortable. And I'm so tired of feeling sick! I'm so tired of having no life. No peace. No company. I'm tired of it all right now...I wish I could just take some kind of tranquilizer right now and not feel stressed even though my heart is racing/plopping around like an SUV trying to be a racecar! Can you tell this is all making me a little cranky?lol

Thursday, April 22, 2010

B.E.D. Notes

Now that I'm comfy (or getting there) in bed, I remembered I did want to note a couple of things about my Body Ecology Diet experience.

First, still itching on all four quadrants of my body, elbows, knees, random areas. Also some burning behind my knees. Not as bad as before though.

Also, I'm toying with an idea. I was reading an article on the B.E.D. website about adrenal fatigue, and it struck me that one of the things I have not tried that is mentioned all over in regards to adrenal fatigue is going to bed early!!!!!

Well, that just has never been easy for me. Even when working, and run down by a flare of FM/relapse of CFS, 11pm was early for me. But I keep reading that the adrenals do the most repair between 9pm and 1am. Sigh...

On the bright side, I am waking up early more often these days. And I do now have all my meds that will help me sleep again...maybe it's worth a try, to start aiming for, say... 11pm?

My gut tells me this adrenal thing is a big deal w/me...not just my gut, experience. I've had problems retaining electrolytes, my pupils act weird, the whoel POTS low/orthostatic bp problems, the fact that I've been given adrenal supplements before and been helped by them when nothing else was working, and that I can't handle ANY kind of stress these days. (It's not lost on me that having a roof over my head that it's not my responsibility to pay for, I could be doing so much with my time and what little energy I had...only I have no energy and I get overwhelmed by the most ridiculous things...even stuff I love and was looking forward to doing...)

So maybe it's worth a shot...

A little bit of peace, brain scatter, and my remedy for a killer sinus headache

I'm feeling silly right now, not sure why. But in a good way. I'm home alone, sitting at the dining room table sipping some Yogi Detox Tea, and for some reason, right now, that is enough. All is well with the world.

Just a couple of hours ago I was near the desperate edge of misery fighting off an excruciating sinus headache. Yep, the allergies are back with a vengeance. It seems what was doing the trick were all the enzymes I was taking, and I had to lay off them during my monthly cycle, because if I don't bad stuff happens. (I won't gross you out w/any more details.)
What is this miracle allergy cure I've discovered? (Well not a cure, but pretty damn close!) Well, I have been taking a supplement called Inflatrol, which contains Papain, Bromelain, and Quercetin (of which the first two help by thinning secretions, i.e., mucous/phlegm, and the third works as an anti-histamine) along with a negligible amount of Vitamin C, and Ginger and Turmeric, two potent antioxidant/anti-inflammatories. That helps a bit. But the last couple of weeks on this diet, I've been taking another digestive enzyme formula as well (it was free, and it contains pancreatin, along with other ingredients which aid in digestion, including some more papain & bromelain). But what I think has really been the key is the Natto I've been eating, which contains Nattokinase. I've noticed the difference right away whenever I have some of the gooey stuff. So yay for the Body Ecology Diet! (I'd heard of Natto awhile back, actually been taking Nattokinase supplements to help keep my Endometriosis in check for awhile on & off, but it wasn't until I heard Donna Gates' Liver Cleanse protocol that I decided to try the icky sounding stuff. As gooey and slightly icky as it is, I can't seem to keep away from it; my body just seems to love it. The protein from the fermented soy beans seems to do be me good, plus it's not as heavy as Tempeh, and seems to help digest whatever else I eat with it.

So today, as I was having a rather unpleasant reminder of just how awful allergies can be (I had no energy, brain fog up the yazoo, although only slightly worsened by the allergies, and I was starting to feel fluey, feverish, heavy-headed and just plain miserable. And oh yeah, the sinus headache felt like my forehead/skull were being pried in two. That bad!) when I decided to say screw it, and get back on the enzymes. First, I had some Natto, whipped up with some gluten-free Tamari, some Nori flakes, and a side of cultured veggies. (I know that sounds totally gross, but I feel compelled to eat it! Almost, even, maybe...LIKE it!)

In slight desperation, while out running errands, I'd taken a pseudoephedrine (decongestant that is an upper, sometimes sets off my POTS, or makes me very restless and cranky) but that wasn't helping, neither was my nasal spray, so I gave in and did a sinus rinse (I cannot get used to that whole deal!) and what a relief right there...well about halfway... Next I took a couple of acetominophen (paracetomol for those in Europe or outside the U.S.) and some ginger tea (in hopes of it acting as an anti-inflammatory. I also sucked on some chewable enzymes (about $3 a Trader Joe's, great for when you forget to take the non-chewable kind in time, and in this case, for liquifying & loosening phlegm clogging up your sinuses. I knew it wouldn't all help instantly, so in the meantime, to keep any more allergens from entering my poor nose, I coated it with Vicks Vapo-Rub and trapped the vapors inside w/cotton. An hour later, much better.

Now if I could just get my attention span back...I can barely even seem to write an e-mail, much less chat or Tweet...can't even seem to watch a DVD...To think I used to be the Queen of Multi-tasking...not much hope trying to do anything useful until that improves a bit...

In the meantime, I'm going to rev up the detox tea and water w/lemon, since I seem to be out of Vitamin C, and it just occurred to me that the reason they keep saying to sip water w/lemon is possibly partly at least because of the Vitamin C in the lemon...good for energy...well off I go to throw my hippie self into a reclining position, back's so tired!

Oh wait! Speaking of back!
The rheumy I saw yesterday called and left me a message that she looked at my MRI report (uh, that's what I gave it to her yesterday! Shouldn't she have done that then?) and I have some issues w/my spine that cause pain so she's going to refer me to a pain management doctor and there's an injection that they can put in my spine to help with that.

!!!?!!!?

Hmm. Needle. Spine. I'm not in THAT much pain!
I actually feel grateful, because my pain is actually not constant, and even though it's been worse this past year than it has been in awhile, I know if I could just afford to see a chiropractor I could get it under control, probably completely, plus some physical therapy to strengthen it and get rid of those trigger points I always get...

Maybe she didn't believe me that 30 Vicodin last me at least 3 months... I know that stuff is addictive and if I don't have anywhere important to be or anything to do, I'd rather ride it out in bed w/my trusty ol' heating pad, unless it gets really bad. Other than that, I only take them when I have something to do, like drive...go to family function, etc. and being out for a couple of months and detoxing my body w/this diet has made me want to take them even less frequently. (Not to mention people close to me abusing Rx meds or becoming dependent on them! Still enough of a control freak there that I couldn't stand to have a drug controlling me.)
Fun stuff when you're poor and have a pain condition! One doctor alternates between pushing pills I don't need (which I declined!) and then warning me they're addictive, another tells me if I should lose my bottle I won't get a refill! I miss my old doctors. They knew me, had access to all my med records for the last several years, and never made me feel like a drug seeking addict. Ah, well. Someday I shall know the joys of private insurance again! Or not need pain meds other than Tylenol! I know the day will come.:)

Wednesday, April 21, 2010

Friday, April 16, 2010

Waxing and Waning

...is the name of the game.

So maybe I did jinx things by putting in print that I've been basically content and things were at least feeling up...
Or maybe it's just my darn girly hormones messing with me. The timing is right. Just out of the blue I just started feeling my mood go down suddenly, like being on an elevator w/the bottom cut out. Suddenly halfway down the well and flailing for something to hang onto. It's not pitch black but I still now I need to find something. (Don't worry, today I've found a ledge and I'm resting comfortably.)

My physical symptoms have been waxing & waning too. At the beginning of the week, I was having some mean head-rushes, newly combined with jelly legs, and of the variety that threaten headaches if they persist.

That's better, but last night I didn't realize I'd run out of Metoprolol in my nighttime pill organizer (I was forgetting what I'd just taken wayyyy too often.) and ended up sleeping fitfully for only a couple of hours before getting up at 7:30am, trying again, rinsing, repeating, and giving up on sleep. Only to realize around noon that the first time I woke up it was my heartbeat misbehaving that woke me. (It was misbehaving again at the time.) The reason I'd done nothing about it at 7 was that I had been sure I'd taken it, the pill organizer was all set up. But now I remembered that I'd run out of my rx, and hadn't had enough to put it in the last couple of slots, Friday & Saturday Day. I checked to see if I had any in there for the morning, and nope...Yup, must've taken the last one yesterday morning or Wednesday night. Grrrrrrr.

I guess I should feel lucky at least I found a doctor who knew this was a thing w/CFS and that I wasn't as crazy as some of the other docs sometimes make me feel, and that he actually prescribed me something to help, cuz I was sinking fast before beginning the Metoprolol. Spending far too much time in bed, and just plain trying to distract myself from my racing heart (if it was slow enough to allow it). It doesn't completely stop it, and now, the day I miss a dose I can usually count on my heart wigging out at full speed on a race to nowhere. But still it's been a lot better, and I'm grateful.

Lethargy. I guess that's the best word for what's kept ne from calling UC Irvine to further investigate their ALS/Neuromuscular Disorder Clinic to find out if they do indeed have the type of testing I'd like done on my Autonomic Function.
Since I still feel some level of sickness caused by what I belive is Dysautonomia on a daily basis, even when Tachycardia is under control, I really feel it's important to my Disability case to have these darn tests done (In the case of the tilt-table test, RE-done, AND interpreted by someone who knows how!) it should be a top priority. Ah, I think seeing THAT in print may have just been the thing to make me truly understand that! (As well as the lovely episode of nonsensical feeling hot, breaking into a cold sweat and feeling weak, nauseous, and really, really ill I had earlier today!)

The other thing of consequence (cuz, yes, my laundry is of consequence, cuz I have nothing (much less anything cute) left to wear but whatever I slept in, is getting my butt on the waiting list at some of the affordable housing apartment buildings around here, which are actually pretty nice!
Of less immediate urgence, but still with the potential to have a high impact on my happiness, health, and sanity in the not so far off future.

I think a lot of the time now...well, it's been so long that it's seemed like no matter what I do right, how I prepare, try to plan, find ways to move forward, I can't get there...I kind of feel like it's pointless. My life has been on some type of hold for 7 years now. Almost total hold for the past two.
I've had to let go to survive and stay sane. So I'm not as on top of things as I once was, and that's frustrating on the days I care, and as I've mentioned before, I have trouble deciding if it's for the best or a sign of an impending depression sneaking up to envelope me...but as I just said, it's a necessary conecssion for sanity, so I guess there's my answer.

Did I mention I'm starving? Sharing that is my way of excusing the perceived previous rambling. I had a yummy shredded carrot/ginger/lemon concoction with some Young Coconut Kefir pudding a couple hours ago, but I'm starving and so tired of chopping and cooking veggies. Microwave baked potato to the rescue! Here I come!

Wednesday, April 14, 2010

Cortisol Testing

I got to see a cardiologist this week. (The GP at my new clinic sent me to him so he could manage the POTS & all that.) Thankfully, he was very sweet; an older gentleman. He listened. He had no answers, but he tried, he listened, he examined, and best of all at least he didn't give me the impression he thought I was a loon. (he didn't tell me what I needed was exercise,like the last one I saw, a suggestion so far off base it drove me to tears...because at the time I could barely stand!)

His only idea was to have my cortisol tested. When the do that test though, it always comes back normal. However, last year, I had the other version, the one where they have you collect saliva a few times over a 24 hour period and compare the measurements to what they should be at those times. Mine was low in the daytime, and high at night, which explains my insomnia and the fact that I feel quite energetic at about 1am...And any little thing stresses me out in thee early afternoon (I don't even get up in the morning anymore! Lucky me? Not really, it kinda sucks!)

Anyways, found this article that describes it & thought I'd share.

http://www.nutritionalmedicine.org.uk/phdi/p1.nsf/supppages/franklin?opendocument&part=6

On the bright side, I asked him if I could find a place that did Autonomic Nervous System Function testing, he would give me a referral. :)

Friday, April 9, 2010

Cheered Up!

It's been bugging me for weeks, actually months now, that I really need to post an update! I've been feeling in much better spirits for most of the year now, and I suspect part of what kept me from posting was an irrational fear of bursting the bubble...

I think it's safe to say now that as the year is more than a quarter over, the time has come, so here goes...

Things are good. The downward dragging arms of depression have let up. I don't have very many down, down days like I used to last year. If that's because the holidays are over, or just because my mood-dictating chemicals are re-setting themselves, I don't know.

I've been taking Epivir for 3 months now, and I noticed the difference, at least in my immune system, almost from the beginning. (Although at the very beginning, I did get sicker, I had a stomach flu, i.e., an Enterovirus flare-up that lasted for almost 3 weeks; I could barely eat solid foods, but happily, I needed badly to lose weight) In late January, or early February I came down with a sinus infection, but unlike last year, when one after another had me stuck in bed, achey, feverish, and feeling completely sick and miserable. This time, I barely felt sick. I only suspected I was because of persistent sinus headaches, and the fact that I was spitting up practically pure blood from my nose when I did my sinus rinses...
Anyhow, once treated, I recovered quickly and haven't been ill since. The only other difference I've noticed is I feel sleepy a lot sincee I started the Epivir, as opposed to just exhausted. Despite that, I think I am very slowly but surely gaining stamina.

The other change I've made healthwise, is starting the Body Ecology Diet.

I started it slowly, first working on incorporating foods from it into my existing lacto-ovo vegetarian diet. But I found it easier than I thought, and noticed the difference. My stomach had been bothering me a lot...besides acid reflux that needed constant acid reducers and antacids, I felt bloated and uncomfortable often, even nauseous at times, and I noticed that this also seemed to affect my Interstitial Cystitis symptoms. Once I started incorporating Body Ecology's "seed-like grains", things got much better, and when I ate my old diet things acted up right away again, so I decided to make it a full-time endeavor, even if minus some of the more expensive, difficult sounding foods, such as Young Coconut Kefir and Culutured vegetables.

Things were going great, I lost more weight and starte feeling SO much better about myself, my stomach flattened out so much that my seatbelt in the car didn't bother me anymore; in fact it barely touched my stomach.

Unfortunately in the last weeks I found myself cheating a bit and right before Easter I'd gone gung-ho, inclucing foods like Kimchi, Coconut Kefir (I made my own using a bottle of store-bought YCK as a starter with my own Young Green Coconut water. It worked like a dream! And way cheaper than buying the culture.) and even Natto. I started itching a bit, apparently from die-off or detox...but I got that under control...until I chated again on Easter weekend, and then the itch got insane, like crazy-making...but I read up on it, and came to the conclusion that it's my liver detoxing, probably must more quickly because of the new foods, decrease in grains, and increase in raw veggies.

The one amazing thing that has occured in the last couple of weeks, is that my allergies seem to be disappearing. They're still there, but instead of in the form of asthma attacks, itchy eyes (which respond to ahti-histamines) and excruciating nasal congestion so bad I can barely breath, and excruciating sinus headaches (which don't fully respond) I find myself with very mild nasal congestion, and an occasionally runny nose!

I find myself loving SALADs (yup, I'm one of those vegetarians who hardly eats veggies, subsisting mostly on grains, albeit whole, and protein) and rediscovering the joys of other veggies, raw and cooked. Sometimes my stomach feels a little grumpy, and I feel it asking me for some raw veggies. I eat a salad, or even a simple celery stick, and it becomes relaxed, light, and happy.

So good stuff lately... I've been keeping to myself, but I've stopped minding it. Trying to have a social life right now is just TOO much work. I'll happily spend my weekend nights at home with the laptop and my cable, or visiting my Mom and taking it easy at her place. I no longer seen the point in going out to drink so I can feel like a normal person for a few hours and feel miserable for 2 days. I haven't give up on living, but I don't mind waiting until my time comes again, as I'm sure it will. In the meantime, thid diet is one thing I can do to take care of me, and I have confidence that it will continue to improve my health. I'm also trying to bolster my adrenals a bit, as I still feel overwhelmed about nothing far too much of the time, and I'm hoping I can at least go back to school in the Fall. To think that it's been 2 years already...2 years in which I could have transfered to the university nearby with the great Writing Program...well, I don't beat myself up or get angry these days. I haven't been up for it, and that's that. One day perhaps but now, I just want to find some kind of peace, and I'm getting there.