I Was Never Good At Networking Anyways

Since my uber intense fibromyalgia attack struck... and continues to strike... I've had a lot of time on my hands. At home. With nothing to do. And no where to go, seeing as I can't go any where on  my own, because I can't really walk on my own. Well, I sorta can now, but I don't want to take the risk of getting hit with a fatigue bout and having to like, I don't know, dramatically sit/fall down in the middle of a Barnes and Noble isle instead of having my mom/dad help me. Sigh.

Back to the point. Lots of time on my hands.

So I thought that looking for fibromyalgia/chronic fatigue support groups would be a super awesome idea, right? So I spent yesterday searching. Particularly of the young adult sort. After a few hours of searching, I found a really cool facebook page and even a social networking site for people under 40 with neuro-immune illnesses such as:

Myalgic Encephalomyelitis, Chronic Fatigue Syndrome (what I've got), Chronic Lyme Disease, Fibromyalgia (also what I've got), Rheumatoid Arthritis, Lupus, Sarcoidosis, Reflex Sympathetic Dystrophy, Multiple Sclerosis, Multiple Chemical Sensitivity, Mold-Related Illness

Should be awesome, right?

Not.

Okay, so it IS awesome. All these people who feel so isolated because these diseases make us sick and home-bound so much of the time (coughcough--see:mylife--coughcough) being able to "hang out" sort of, with other people who totally are going throught the same sort of stuff. It's awesome.

I can't do it. It made me so ridiculously depressed. And I don't even know why. I guess I like to live my life just floating through it with as cheerful an attitude as I can, not over thinking anything. If I start overthinking it, that's when I start getting sad. I'm not avoiding it, oh no, let me tell you. No cop out's here. I just don't want to center my life on my health problems--- at least, not any more than it is. I don't want my fibromyalgia and chronic fatigue to define who I am, and if all I do is associate with people with the same problems, talking about it, maybe not even complaing about it, but still focusing on it... I don't want my life to be like that. I want my health problems to be part of my life, not my whole life.

So, I was going to change this blog up to be more of a "fibromyalgia diaries" and be an uplifting tale of a young adult and how she deals with the daily trials of health issues... but screw that. I am who I am, I write what I write, and I'm happy as I am. No need to be a saint.

Dear Ellie--

Dear Ellie: You know what would be even more exciting that you being birthed sometime in the next 3 weeks? You being birthed in CALIFORNIA sometime in the next 3 weeks! Love, your Aunt Holly

Snowcovered Sand

So I went to the beach yesterday. Guess what song was stuck in my head?

"Walking in a Winter Wonderland."

Naturally.

Fibromyalgia Diaries

So I haven't been posting lately. If you've noticed. Or if you haven't, well, I just pointed it out, so now you know.
So I thought I'd talk about what's been going on with me lately. Half because I want to explain, and half because I want to document... and half because I just want to talk about it. And if you're wondering how I can be 1 1/2 parts... you know I'm just that awesome :)

No, so, you all know that I have this super fun disease called (to be read in superhero announcer voice):
"FIBROMYALGIA!"
where my body likes to hurt for no good reason. Also, I have Chronic Fatigue Syndrome, which I haven't really discussed on here, but that's what's really the killer-- like I mentioned in a post a few weeks back, where taking a shower had me out on my back for an hour, it exhausted me so bad. It makes the most mundane things suddenly feel like you've been asked to run a twelve mile race while carrying eight bowling balls.

So, about a month ago I had this super major Fibro attack... it's been progressively getting worse for a while now, and finally it got to the point of sheer agony from the tip of my head to the bottoms of my feet and everywhere in between, and no matter what I did, I couldn't get any relief. Not even when I slept. So Mom was out of town visitng my Grandma Betty for ten days, and Dad was working, and I was home alone during the days, just dying from all this pain. I was getting dizzy and light-headed and heavy-futy migraines, and I wasn't getting any sleep because of the pain, so mentally I wasn't getting any rest, so I was starting to drive myself insane... Finally I just sobbed and sobbed because I just couldn't get it to stop... That night, I was up from two in the morning, my arms from the elbows to the wrist completely numb (super weird, right? I mean, really?) and when Dad woke up, I just cried and cried, and cried, and cried some more, and he said he'd take me to the emergency room, since we couldn't get in to see my doctor. Then I took a shower, and my legs started to go numb, so I got out and cried some more. And then we went to the ER.

Moving on, the ER wasn't any help--- no one knew what to do. I was fuuuuuuuuuuuuuuuming mad. I would say other things but there's a good chance my mother will read this, so I won't say them. But I did get my very first shot in the butt! Shot version of ibprofin. Woot dog. Then, from there, we went to the partner of my regular doctor, who also had no idea what to do with me, but did end up prescribing me some muscle relaxers, which in the long run helped. Then, later that night, we went to Urgent Care, to get another one of the butt shots because they only lasted 6 hours--- so I got TWO butt shots in one day. I was pretty excited about that, which was random, because I was in so much pain, but I was excited that I had finally gotten butt shots, because we would be learning them next semester in school, and now I would have actually had patient experience with them...

So, after all that happens, it takes a good week or so, Mom finally comes home-- thank heavens!!!-- the muscle relaxers kick in, as do the steriods (oh, yeah, somewhere along the line I got steriods, did I forget that?) and the pain finally starts to go away. Left in it's place? Complete muscle weakness.

I can no longer stand for more than a minute. I can't stand in the shower. I can hardly walk around the house. If I'm walking out the driveway, I need to hold on to Mom. My arms shake if I hold a book for too long.

And I'm thinking... "What. The. Freaking. Crap?" (Sorry Mom.) I'm twenty years old. Not one hundred and twenty. Why am I considering buying a wheel-chair? Why am I looking up places to buy a seat you can put in your shower?  Debating on what color of cane to get? Getting rid of all my high heels, because, heck, I'll never be able to wear those babies again, so why torture myself with having to see them in my closet every day?

Over a week into this, I finally get into see a Rheumatologist, who deals with diseases of the autoimmunsystem, joints, muscles, that sort of stuff, where fibromyalgia patients go. She listens to me. Really listens to me. She asks in depth about my history, trying to make connections with my headaches and other problems. She seems to really understand what I'm telling her and instead of telling me to buck up, she wants to figure out what's going on as much as I do. However, it's not like my body can talk and say, "Hey, Dr. T, we've got MS!" or whatever. Not that it would. My body is a sneaky little devil that keeps it's problems hidden deep within itself where only the deep-searching or open-minded doctors go... So we have to take other routes: I did some X-rays, got an EKG, did some blood tests, and will have a lot more extensive ones done tomorrow.

Thankfully, my strength is coming back. I can stand a whole lot more now, and I can walk around quite a bit. I still haven't driven and gone anywhere by myself yet since all this has happened, but I slowly inching in that direction. I went to the beach today, and walking in the sand was pretty rough, but I didn't have to stop and rest for a minute, so I'm doing good. :)

Hopefully, hopefully, we can figure out what happened. This attack opened not just my mind, but my families mind at just what, and particularly what not my body is capable of. It's no secret that my life has been and is going to continue to be very different from the norm because of these health issues. But I'm thankful for all the support that I've been blessed with, and I'm thankful for all the things that AREN'T wrong with my body.

Although, I really, REALLY could have done without that bout of stomach flu this weekend. Stomach flu... food poisoning... deadly parasite....

I'm not ruling that one out!!!

(You Probably Didn't Notice, But)

Hey, hey, hey.... did you notice? They cutsey little chandlier in the corner?
Yeah, that one up there? ^>^>^
(well, there only is one...)
If you look closely, the jewels move and sway slightly!

Thought I'd just point that out, don't cha know.

Teehee. :)

Baby Fever

So my dear sister Stephanie and her husband, my fantastic brother in law, Greg are due to have their baby in the next three weeks and

I'M.

SO.

STOKED.

You can not imagine the baby fever that has occured at this house for the last nine months; I'm telling you, it's crazy anticipation that's been boiling steadily, daily, for nearly a year now. Do you KNOW how long nine months really is? Really? In reality? Blew my mind.

We can't watch a diaper commercial anymore without blubbering "baaaaaaaaaaby!!!" and getting overly excited.

Or maybe that's just me. I do watch "A Baby Story" and "Make Room for Multiples" on a daily basis...

Anyways. Stephanie is officially in her ninth month, and little Ellie was officially considered full term yesterday; or, as Dad calls it "well done," and as I refer to it, "fully baked." Stephanie has yet to comment on these terms, so I hope she does not find them offensive. Must ask Greg.

SO I GET TO BE AN AUNT FOR THE FIRST TIME!!! You can't understand how excited I am to have a baby around. Even though, technically, she won't be "around." She'll be in Utah, and we'll be here. In California. In Vista. By the beach. Enjoying fine beach weather. In the seventies. Year round. Never varying. Ever.

While they are baking in the ninties and up in the summer. And freezing in the winter. With flu seasons. And chilly air. Making for pink, runny noses. Runny baby noses. And snow. Lots of snow. Requiring snow suits for babies. Big, fat snow suits. That babies can't see out of. And might not be able to breathe out of. Hardly.

Just a thought.

So I had a dream last night where Mom and I were at the hospital when Steph was giving birth, and I guess she had a C-section, cause we were just sitting up by her head... Steph was randomly asleep. I like to think that they put her to sleep rather than she passed out, however. :) So the doctor takes the cute, already clean baby out and instead of placing it on Steph like usual, I'm like, "I'll take it! She's asleep!" So I grab it, the first one to hold it--- and we realize, Ooops!!! It's a Junior! Ellie's and Elliot!!!

I woke up this morning and had a good laugh.

And that, my friends, is my baby news, for now. I'm sure I'll have all sorts of stuff to gush about once my dear niece is actually here and I've finally met her for the first time :)

Dumbledore Invented Gel Pens

So my Mom teaches Laurels at church--- the 16 and 17 year old girls.

We were talking about how her lesson went on Sunday. She turned to me and said, "I brought them the gel pens to use for an activity, and Holly, you would have thought I'd brought them a thousand dollars, they were so excited!"

I had a good laugh. What is it with girls and gel pens? I mean, it's so true. There's something so exciting about getting to write in orange, sparkely letters that smear all over you hand as you write, while gnawing at the cheap, sparkely plastic pen cap that ineviatbly break, backfire, and spew ink all over you/your backpack/your mouth.

Getting blasted with a faulty gel pen---particulary in the middle of some middle school class, while you were writing a note to your bestie-- is like an unspoken rite of passage into womanhood.

I still get pumped over brightly colored Sharpies and things. I made sure I got big 25 pack or whatever for Christmas this year (for the express purpose of doodling). Although there is a significant lack of Lisa Frank around the house these days, I can't say I'll ever loose the love for girly school supplies: I just label them as "scrapbooking material" nowadays. :)

And yes, Curious George Stickers do count as "scrapbooking materials"!!!!!!!

PS. Dumbledore always wrote in green ink. Why, I do believe he must have been the inventor of the first gel pen-- with his spiffy quill and out-of-the-box green ink... guess who's even more awesome now? DUMBLEDORE!

(you know I had to do it--- draw in a Harry Potter metaphor.)
(I can't help it. I've got a problem.)

Chocolate Milk Therapy

RX: One large glass chocolate milk taken no more than every 8 hours.
May be substituted for large chocolate milk shake, but only if high in fat.
Hot chocolate may be added but may not substitute for regular dose.
Regular consumption of sweets to be resumed as usual.

:)

This may be the only prescription that's worked so far!

Sorry for Nonposting

Sorry about the nonposting lately.

The last few months have been really hard months, health wise.

The last few weeks, particularly, have been pretty darn terrible.

And today was one of those days that I shook with the effort of getting dressed. That was scary. Haven't had one of those in a while. It took me instantly back to high school and how I lived those few years... every time I my body gets to that point, and I remember how hopeless I felt, I have to fight off a panic attack.

But I'm up, I'm showered, I'm dressed, and instead of lying in bed, I'm sitting on the couch on my computer, and today, that's saying something to be proud of! :) So hip-hip-hooray, I'm gonna sit with my cat under the fan and enjoy what's left of the afternoon.

Happy Wednesday!