Wednesday, December 17, 2008

gluten, dairy & more!

Now that I'm starting to narrow down what's been ailing me, thanks to my super new nutritionist, I've begun to find my way back to feeling better. Seems what's been doing me the most damage is an allergy/intolerance/sensitivity to gluten, dairy (casein to be exact) and peanuts (off all things).

I feel so grateful to have some answers & no longer randomly shooting in the dark. I know these to be THE answers because as I've been eliminating and reorganizing my diet, I have seen the improvements in my energy, mental clarity, emotional stability, chronic pain, digestive discomforts, and sleep quality. It's not to say that I'm cured or even 100% better--it's a learning curve & darn if I don't push the boundaries to see just how close I can get to the line before feeling like crap again. But I'm learning...slowly but surely...what works & what doesn't.

I will use this arena to hone my gluten-free, casein-free, peanut-free dietary skills, share the information I've learned, as well as engage in the online community of other folks navigating the sometimes frustrating waters of dietary challenges.

Thursday, September 25, 2008

the funk of loneliness

I've had friends in & out of my house due to the power outages from Ike. They've come over to do life things like laundry & Internet, as well as sleep & just "be" in electricity. Even though I've felt lonely for some time now, having people around has illuminated just how alone I've become. Simply having someone in another room, a presence so nearby, has been quietly comforting & perhaps even reassuring that I will not forever want to be alone as I have been feeling lately.

As a result of not feeling good physically, I've allowed myself to retreat for rest & to research remedies for rejuvenation (and apparently alliteration). I have always been nursing my aching heart...for many many months it's been due to waiting, longing for my love to come home, but now it's due to letting him go as we've decided, in his words, to "go out separate ways."

I don't know how others do it, but when I'm in pain, I want to be left alone. When I hurt my body, I don't want to be touched & when my heart hurts, I don't even want to be seen. I just want to hole up, endure the pain, and wait for the day when I can confidently crawl out and expose myself again. It's not a particularly good method, but it's the one I've adopted throughout these seemingly many recent years of emotional ups & downs. To me, the cruelest part of breaking up is that you're losing the very person you want to turn to for help easing the pain. It makes being down all the lonelier, if you ask me.

Currently, I'm still down...hurting inside, disappointed, unable to fully accept what is vs. what I want. But with the help of presence...not words or wisdom or forced socialness...I'm reassured that I will have the choice again, one day, to not feel terminally alone.

Wednesday, August 20, 2008

hormones, stress & mold...oh my!

More pieces of the health puzzle have come to light...still more needed.

While hunting down a fly one morning, I swatted spastically in the air trying to get the bugger when I noticed something equally annoying at the air vent above. MOLD was growing around the ceiling & the vent. I ran to other vents, only to find the same thing. But I didn't have time to really give it much thought...or finish off the fly either.

Luckily that day I had my doctor's appointment. During the appointment, we were talking about my last round of test results, which a nurse had already called me to tell me everything came back normal on the hormone tests. But apprarently everything wasn't normal...the doctor reported that my estrogen levels were VERY low & explained that could easily be contributing to the fatigue, depression, weight and sleep problems. I later read it would also contribute to my digestion & back problems as well. I thought, aha! I have found the final link...but why is my estrogen low? I'm only 37, and while I know "the change" can start at my age, I'm not having any unnormal female changes along those lines. Oh goodie, something new to research.

I also mentioned that my sinuses had been bothering me & as those words came out of my mouth, I remembered the mold, so I brought up it. She stopped and said, well that could be the very thing behind all of your CFS symptoms...depending on what kind of mold & how widespread it is. Perhaps IT is the final link?

So now we're testing for mold & yeasts. I've gotten the mold problem at home *hopefully* tended to (and according to the mold people, the issue was isolated just around the vents & not throughout the entire system, luckily). I've not noticed any difference in that respect since.

The only difference I've noticed with the estrogen replacement is that my digestion has calmed down--I'm not AS sensitive to everything anymore. Trouble is, about a week prior to beginning the estrogen supplments, I started smoking again & since I have had more energy...go figure. I know, I know...not the smartest, healthiest or best move after 6 months quit, but I tell you what, I do feel better than I have in six months since quitting & it's not from the estrogen. I don't feel great or even all that good, but I don't feel as run down as I have been. Obviously whatever's making me feel badly was there all along under the smoking, but I don't think it was because of the smoking & I guess the smoking masked how bad it was up until I quit.

So now I'm waiting on new test results...for the molds/yeasts, thyroid, adrenal, killer cells, and it seems something else. Apparently the adrenal glands, when chronically taxed, can max out the estrogen levels. So we'll see what the test says re: my adrenal glands, but I have a feeling they could be the masterminds behind all my ill feelings. I know I say that about everything every time something new seems to be the answer, but from everything I read, those damn adrenals can really make or break you. And since I seem to allow myself to live in constant states of emotional stress (and really what I've come to understand as dis-stress) by being in relationships that are never quite working or jobs that I can't find ways to be content with or feeling financially strained no matter how much I make or spend, and not feeling comfortable, settled, or grounded since moving to Houston. Seems I don't know how to get my needs met, no matter what portion of my life I'm focused on, and this causes me a great deal of chronic disstress.

This last bit is a BIG part of this process for me because it could be very situational, but I think it would be this way no matter what the situation, relationship, job, etc is...this I need more time to wrap my head around & perhaps will blog on it specifically later.
Blood testing is easier to understand just now.

Monday, August 11, 2008

wicked webs and the missing link: endometriosis

Just realized there's a link between Endometriosis & CFS. Another piece of the puzzle comes together...

Years ago, I had a female GP who was the first person to mention the word endometriosis to me, and she explained that it might be worth checking out; however, it would have to be done with minimally invasive laprascopy, which would only tell us if there was an overgrowth, for which tissue removal was a temporary fix, but not likely a long-standing cure. Basically it would simply confirm or deny suspicions.

I have heavy periods, but they're not painful periods per se. I do have painful & chronic lower back pain & a general congested feeling in my pelvic area, combined with the fatigue and moodiness and irritable bowel/digestive disorders. I'd always associated the lower back flare ups to corresponding bowel flare ups, but never thinking there might be a 3rd flare up to blame for them both. It was only when I started to feel that the general pelvic area was "inflamed" that the thought of endometriosis came back into my mind.

Now with my CFS-minded research, I've tacked on endometrosis in my research criteria. Turns out, CFS is 100 times more likely in endometriosis patients than the general female population. Yeah, 100 times more likely & Fibromyalgia is something like twice as likely for endo sufferers. Apparently endometriosis is thought to cause (or contribute to) immune system dysfunction...and immune system dysfuction is known to instigate the viral infections & general CFS conditions.

My what a wicked little web my body has been weaving for me...but little by little, I am grabbing the threads to unravel it til I get to where I need to be.

Wednesday, August 6, 2008

a bit of a bitch

I'm going to bitch today because I'm feeling frustrated...with a capital F.

I had a gloriously free & unexpected day off yesterday (due to "tropical storm Eduardo" which turned out to be just a rainy day) and I did nothing with the day becaues I felt so run down and shitty. I'd slept poorly because my back was killing me all night (which I'm pretty sure was due to some flour/sugar ingesting---when will I learn?!?).

Anyway, this is probably why I'm in a pissy mood too...the offending substances are making me irritable, like they usually do. And then I had some watermelon today & have spent the afternoon since lunch bloated & crampy. Is it candida? Who the hell knows.

I'm feeling sorry for myself too because I feel like it's always 1 step foward, 2 steps back. My mom has a friend who's gotten passed CFS and she put us in touch (I was very hopeful he'd have some great advice to impart), but so far it's just been the usual stuff I've already been trying. Then today I joined a ME/CFS group on Facebook (and it's great to be among people who understand), but it's made me realize there's a potentially long road to travel with this thing.

I need to get a meditation routine going...actually I feel like I just need A routine. I think it might help me feel like I have some control in all of this (there is that ever powerful "control" topic again)...or put another way, some say in getting myself well.

So if I put a daily routine together, what would/should/could I include?!?

hot lemon water (am)
yoga stretches & quiet meditation (30 mins total)
body brushing (pre-shower)
various supplements & digestive enzymes w/ breakfast
cider/honey drink (am)
supps & enzymes w/ lunch
aloe juice drink (pm)
walk after work with some light weights/stretching (ideally daily)
supps & enzymes w/ dinner
Epsom bath
sleep aid supps (melatonin & 5-HTP)
stretching & deep breathing
listen to soothing music & journal or read positive affirmation in bed

I'll need to revisit this & see what I can add, but this seems like a good start...and makes me feel alittle less scattered just for putting it down here.

Monday, August 4, 2008

from wiggle worm to PLMD

As a kid, I used to get kicked out of bed when I'd try to sleep with my parents for being a "wiggle worm." In other words, I moved around alot when sleeping.

Now today, as an adult, I've been diagnosed with "periodic limb movement disorder" which sounds made up, but I guess it's just really a fancy way to say I am still a wiggle worm...and I'm assuming it's now an excuse to try to put me on some sort of medication or contraption to make me sleep more soundly. If they could find a way to charge for prescriptions to counting sheep, I'm sure they would patent it & put it in a pill bottle.

There's a whole host of possibilities why, but I haven't the foggiest which one is my why. There are so many theories why people have trouble sleeping, why people toss & turn, why people fidget instead of sleep soundly. Yet another million dollar question to search for answers!

Ugh, the saga continues...

Thursday, July 31, 2008

waves, detours, and miles apart

I spoke to my boyfriend last night, which I do most nights, and usually the calls have been brief, one-sided since his days only consist of working & stress & not feeling well, etc, etc, so I do most of the talking. But last night he was "pished" (Scottish for drunk), but not incoherent. We actually had a rather nice conversation...and it was mostly him talking, and talking, and talking. But it was very nice to hear his chatter. Reminded me of early dating days, not all that long ago,but after so much time apart, feels like forever ago.

Last night was the first time I'd heard him sound so energized (and just generally interested) in a long time. He used to be a professional musician and he definitely lights up talking about music, so when he talked about some of his olden days & some top shows he'd seen & generally relaying his musical opinions & knowledge to me. I could hear that he was all aglow even from 6,500 miles away.

It made me wonder (not that I haven't a hundred times already) what exactly is his motivation for the job he's doing & the life he's leading over there...but mostly wondering if it's worth the sacrifices he's making to be there. Sacrifices like missing out on a proper relationship with me, having a comfortable home to live in, having fun with friends & doing things that feed his soul & spirit, like playing & watching music. I'm sure I've asked him this question before, in varying forms, but he's never really responded. I don't think he likes to think about it too much.

I have been learning lots of lessons through him & his "situation." I grumble about him not living life more, being a slave to the job/project, etc, etc and it's forced me to look at the same for myself. Granted, I haven't been feeling like living life very much in recent years, but watching him "waste" precious time working like he does (well to me it's wasted), makes me want to appreciate more for myself on this side of the world. Just being sick in general has made me appreciate more.

I think about the days I used to complain about having to go I'd give my left nut to be able to sweat at the Park for 30 minutes. Or the times I'd complain about not having anything to I really don't unless I get up & make it from scratch. So when I do have little snippets of energy, I try to make the most of it, in as safe of ways as possible because who knows when the next wave of fatigue will take hold.

I also grumble to myself that things are languishing...I mean, there's no plan, there's no goal, there's no destination--where are we going, what are we doing, what's our future, do we have a furtutre, why am I waiting for him, what am I waiting for...all that crap that swirls in my head on most days. But the truth is, who the hell knows anyway. I could plan it to the nth degree & it wouldn't matter. Life has its own time table, its own game plan, its own routine...and life does what it wants while we're busy making our grand plans anyway, so why bother wasting the days with worry like that? I'm learning that from him...he doesn't have a clue...and from not feeling well.

Here's hoping those waves of energy start rolling in more often...but until then, I will wait and see where the fatigue (and the waiting) leads me.

Wednesday, July 30, 2008

pins & needles

I tried acupuncture for the first time yesterday. It was & wasn't what I expected.

I had been meaning to try it since 2006 when I had some people recommend it to help with my lower back problems & finally got around to asking my chiropractor if he could recommend anyone when visit after visit with him hadn't produced any lasting effects. Why it took me 2 years to finally get around to going is beyond me...but then again, so much of what I do/don't do is beyond me too.

I was, however, reading about some studies that had been done to treat mono with acupuncture. Apparently it had produced some fairly good results (atleast in the case of this study), so I was reminded that I'd been meaning to try this and on one particular day or feeling particularly shitty, I called to make an appointment at the one place my chiropractor had given me the name of.

And so the appointment day was yesterday & I went in, not knowing much of what to expect other than thin, tiny needles. I laid face down on a massage-like table & she put pins in me in various of the head, base of the skull, upper spin, mid spine, lower spine, across the expanse of the lower back, around my knees & ankles, and even on one hand. Some of the points I could feel as pressed to find just the right spot to stick me. The areas, before the needles, were tender, like little bruises I didn't know were there. The needles themself didn't hurt although I could feel some more than others.

She was hitting spots for my immune system (to help w/ the mono, the fatigue, the sleep problems & digestive issues), as well as for my lower back pain as well. The specific spots met up with things like the gall bladder, liver & spleen, all of which I'd heard other practioners talk about showing signs of distress given my complaints & conditions. So atleast I knew she was operating under the same understandings & I had some consensus going with my alternative treatments.

I laid with the needles all along the back side of me for 45 minutes, floating in & out of relaxation with some ocean sounds playing in the background. All in all, she used about 40 needles. She didn't want to tell me, but I counted as she removed them. She said I should notice some improvment (in energy level especially) after one treatment, but that I would need several to get everything running smoothly again. I figured, even if I can just get a good night sleep or a good bowel movement or feel less depressed it will be worth the $70 & the 45 minutes.

So that was mid-day, and throughout the afternoon back at work I began to notice that my lower back wasn't being as troublesome as it normally is. I didn't need 1-2 minutes of trying to straighten up when getting up from my chair. Could it be? Didn't want to jinx it by even thinking such a thing. I had already decided that after work I would take a little heavier than normal walk in the neighborhood (these lbs that are creeping on are creeping me out & this "resting" is doing me NO good after 6 weeks, so onto plan B, I say). I took my dog (minus the flower from the other day) and we did a semi-power-walk for about 20 minutes & it was awesome...the sun, the sweat, the music in my ears, the cute houses in my neighborhood. I was loving every minute of it and was so glad I did it.

I was a bit tired-feeling the rest of the night, but no more so than any other lazy night of rest, so this was fine. Once in bed I tossed a bit to get to sleep (and mind you, my lower back was bothering me as usual), but I don't remember anything else from the night until about 5:00 when I was awoken by my fat, starvin cat. I put him off, made a trip to the bathroom which indicated I had not been up previously in the night to do so, and laid back down to dose just a bit more. I recalled some dreams I'd had...notably a tall, blonde Swedish hunk wooing me, and realized I probably slept through most, if not all, of the night. Could it be?!?

Now I'm not saying it's because of the actupunture, and I'm not saying it's not because of it either. Could be the placebo effect. Could be the power of suggestion. Could be that I did something else different that day. All I know is that if yesterday is any indication of how things can be, then I'm so very hopeful that my days can be collectively good again. I'm not there yet, but I definitely have a newer hope thanks to this new treatment.

Monday, July 28, 2008

flower heads

The things our pets let us get away pup & a pretty flower out of my birthday bouquet.

Thursday, July 24, 2008


Well it's July 24th, 2008...which marks the 37th birthday in the life of me...and while I'm usually shouting the occassion from the beginning of the month clear through to the end of it, I haven't been as excited about this one.

It has nothing to do with the number attached to it...37 is fine, great in fact. More to do with not having been feeling well & can't really get too crazy this year, plus knowing my boyfriend won't be in town like last year (we went toobing & dare I say [don't get mad girlfriends & ex boyfriends] but this was probably THE best toobing trip, just ahead of the one with my girlfriend smoking cloves & my other girlfriend losing her shoe--you know who you are] because there was hardly anyone there, there had been so much rain that it was moving super fast & we got to go twice for the price of once and it was his very first time in a toob much less the Guadalupe!), and did I mention I just haven't been feeling very well.

But low & behold, the day came around & I decided to make it a happy one FOR MYSELF. It did help that my boyfriend didn't forget my birthday (which I was alittle nervous about to be honest since he's not feeling well himself just now & has been extremely busy & stressed out & is a million miles away), but beyond that, I decided to meet the happiness of the day head on, beginning with a yummy tex mex pollo scramble. I decided to wear my fab new lillybee's from SimplySoles (and built a cute little outfit around it) to dress the happy birthday girl part.

Once at work, I got some festive balloons from a sweet as pie coworker (oh and a $10 winning lottery ticket), a beautiful bouquet of purple & red flowers (my fave combo) from my sweets from far away, a personal chocolate bundt cake (which I can't eat, but it looks so pretty), anther beautiful bouquet from my Houston BFF, several cards in the mail (some with GCs and other fun, flat gifts), and a box of fun gifts from my mother once I was home!

What a fantastically wonderful 37th lieu of having my sweetie right here with me to celebrate, I couldn't have asked for more today!!!

Wednesday, July 23, 2008

hit & miss

I have been trying to figure out why I've felt so poorly for the better part of the last 6 years. It started with some digestive issues that developed in early 2000. After a couple of years, they were still lurking about, so I decided to start seeing a specialist to determine what was up. Nothing conclusive--IBS (i.e. we don't have a clue), eat more fibre & take this pill when it bothers you.

Well, it bothered me every day (at that point for 4 years already) & the fibre made me blow up like a basketball. Plus I was tired all the time & irritable.

NEXT... I half-heartedly tried diets to alleviate my symptoms. I seemed to do better with the low-carb stuff, but never great. I knew already dairy & I weren't the best of friends, but otherwise, it was still a mystery as some things helped & some other seeming similar things did not.

Plus, did I mention I was tired all the time & really irritable? And I had chronic lower back pain too?!?

I always chaulked it up to smoking--if I didn't smoke, I wouldn't feel so run down, I'd sleep better, I'd have more energy, I'd______. I finally quit smoking in February 2008, but I never started feeling any better. I gave it time, let the toxins work their way out, but still no improvement at all. I was angry--here I'd finally given up the thing I thought was my curse only to find I had to go without AND not feel better...and if anything, starting to feel slightly worse. I kept up with my exercise routine, walking instead of running. I thought I was getting lazy, but really I would wipe myself out by exercising one week, and not be able to muster the energy to do much of anything the next week.

So four years after my initial attempt (and plenty of anti-depressants, supplements, diets, exercises, not to mention therapists, nutritionists, chiropractors, massages, and medical specialists, later), I thought I should try yet again to find some (any) answers to why I felt so crappy all the time. I started with the gut again...for some reason, despite the myriad of weird symptoms I'd had over the years, my gut was telling me IT was the genesis of everything else. So I went to a new highly recommended, highly sought after, Mr. Big Time. He ran a couple of tests others had not & suggested others still further; however, he came back to the standard IBS diagnosis, but added that some of my other symptom sounded very similar to the patients he saw that had been diagnosed with Fibromyalgia (FM) & that I should think about seeing a specialist who dealt with that.

Thanks to a friend from work, I was pointed towards an internist who specialized in FM, as well as other similar psuedo- and auto-immune related disorders. She ran tests no one else had run, and sure enough, I was finally starting to get some answers. I have Epstien Barr virus & it's fun offspring Mononucleosis. I also have many other viral infections (Cytomegalovirus & HHV-6 to name 2)--all quite active, thank you very much. No wonder I've been "tired." My poor body had been working overtime (for who knows how much time now--years??) to fight these viruses round the clock, 24/7/365, in addition to fighting my normal bodily fights.

So what now? How do I start putting pieces back together so that I'm not so tired all the time, so that I can get back to being active, have anything other than indifference & malaise as personality traits, and be able to start embarking on the goals & dreams I have beyond my body & caring for it so that it can function in a way that lets me want to achieve anything beyond my current goal of "just making it through the day"?

And this is where my journey begins...

let the lessons begin

On the eve of my 37th birthday, I've decided to change directions with my blog a bit...okay, so I need a more direct direction to begin with, but whatever (as the kids like to say these days).

I started out with dig-it-designs as a means to explore my art interests & the art/creativity of others whose work I admire, enjoy, am amazed by. I started out strong with this & hope to still add to it, but I've since waned. The truth is that lately I've been struggling with some health issues and feeling very confused & heavy with thoughts of what to do, how to feel better, what it all means & so on. I'm kind of sick of "talking" about it & I'm sure my friends/family are sick of "hearing" about it. Plus there is just so much information I'm gathering to educate myself & better understand how to move forward. I figure this can be a great place for me to sort it out for myself & if in so doing I can provide information to anyone else, then all the better.

So here's to figuring it out...or atleast enjoying the journey a bit more.