Monday, September 20, 2010

You won't believe me unless I put in in print for you

Alright my peeps. Still working on that Saturday post. It's actually up in another tab, waiting...no....imploring me to finish it. I will. Probably tomorrow. =P

But right now, I have today's update, which is much simpler..I think. But then, I've just gotten started on this post, so who's knows how long it will run. (I just reread this part, and let me tell you...It's one of the MOST complicated and hectic posts I've done in a while...sorry =/)

I wasn't able to go to class again. It's been weeks, literally. And it's felt like it, too.  But I was able to sleep a bit this morning, which was nice. Since I haven't been sleeping much, it was actually more of a miracle. But it was only a few hours. Then, I had to avoid various contractors looking around the house. We're getting the kitchen completely ripped out, mold growth removed (We had flooding under the floorboards a few months ago that spread to the walls), new cabinets, island, and counter tops installed, and a complete reconstruction of that wing of the house. Then most of the house is getting repainted, and all of the pale hardwood floors (not the dark cherry Brazilian maple though) are going to be ripped out and replaced with new hardwood flooring. It should look pretty nice when it's done. I get to help pick out the paint scheme, which is awesome. My mum comes to me with color swatches and says "I want your eyes on this thing. What would work best where and why". And you know what? I can tell her all that and more! My art teacher Ms. Rew would be exceedingly proud of me! ^_^



Anyway. Once they left, my mum, littlest brother, and I all had to get our things packed up because I had a 2 hour IV therapy at 12:30. It went longer than that by about 40 minutes. The doctor scheduled an impromptu session with us become of more complications (which I'll discuss later *grumpy huff*), and they wanted to do an EKG on me. I've had so many EKG, heart monitors, echo-cardiograms, heart and spinal ultrasounds etc...that I can't count them. It's a bit nuts. But, when they said "EKG time" I just trooped back, put on the most ridiculous hospital gown I've ever seen (Think 1980's bad sci-fi super sleeve thingy...or the final suits of the aliens in Rocky Horror Picture show [Don't EVER see that film though. EVER. It's terrible. Well, except for the Time Warp song :P]. I looked BAD. But I laughed it off, made friend with the tech (Stephanie), and then sat down for my IV therapy. Now, my doctor wanted to run another panel of blood tests, but as I'm so hard to stick, AND I'm going to need all the in tact and healed veins possible for IV therapy, he had them draw my blood from the IV. And man....was that bloody.

The stuck me with the long needle, pushed the catheter all the way in, and then grabbed their largest syringe to hold blood. Then they popped the needle out of the catheter, but were not fast enough in getting the syringe hooked up. Blood started to, dare I say, squirt. It's SUCH a good thing I'm not squeamish with blood, or the blood dripping down my arm and shooting from the tube stuck in my vein might have caused me some discomfort. But, thankfully, there was only a little blood from said tube the second time, when they removed the completely full, very large syringe and attached the various IV leads to my different bags of fluids.
During the 2 hours of sitting and getting more tired from the lydocain (sp?) being pushed into my system, I had to have them turn down the drip rate. My arm hurt. It was also cold. Ugh.
But, eventually, it was all done. They patched me up, and then we talked with the doctor again.

Now, as I keep saying, I never get any good news when I go to the doctor. Today was no different. The last blood panel they did showed that I had a pathogen which was almost like a cross between a bacteria and a virus, a pathogen (not contagious!) that is running rampant throughout my system (this is often a side effect or commonality in people with autoimmune diseases =/). Either my immune system couldn't handle it, or there were more problems going on than the ones already identified, because the little suckers weren't going anywhere.
My doctor is now worried that I have heavy metal poisoning (Yes. BAD), where my body has too much mercury and other metals that are building up in my system. If that's the case, then I'll have to go through some treatments to cleanse them from my system. THEN we'll have to see if my immune system can recover and fight off the pathogen. If not, a huge round of antibiotics + a new medicine regime will ensue. If I DON'T have heavy metals permeating my body, they're going to have to do an even more intensive anti-biotic regime to fight my system's battles for me.
And no. This is not going to fix any of my other problems.
It's just going to allow us to eliminate one more complicating factor.

I have bad news about the IV therapy too. One, it's not working so far. It usually takes 4 treatments to see if it will truly help you, but so far, I've had NO pain relief (which was a major part of this, and which they said I should have noticed after the first few minutes of the lydocain drip), and no more energy than usual. Instead, I've had a stabbing pain going from my chest to my spine, like a railroad spike stuck through my torso. I've had this a few times before, but the pain intensifies with every increase in lidocain, so we're thinking it may be triggering my heart/circulatory syncope....
So my complications are complicating my complicated procedures to help uncomplicate complications caused by other complications.
At least, that's the way my brother put it. But it's so true.
My head really hurts. My whole left side from my hip to my jaw hurts (from my fibro reacting to the IV, my syncope causing my veins to contract, and my nervous system's hypersensitivity taking the contraction as a sign of injury and triggering my fibro to send pain signals to my brain...how's that for a vicious cycle?!)

So, I am again sitting in my room, typing all this up, wondering what God's plan is in all this. I'm not getting better...still. But I'm holding on....barely. My thread is fraying though...

And I have two VERY busy weeks ahead of me...actually, a month of it!
See, I have a very long tuesday (tomorrow), with tutoring from 10:30-11:30, then Keilation (heavy metals fluid testing) from 12:00 to 6:00. Wednesday I'm home all day resting (I hear rumors that people want to visit me that day...please...do!). Thursday I have another IV therapy in the morning, then tutoring from 3-4, and then the opening night of the 3 day True Woman Conference. My mum is renting a wheelchair for me, especially for Friday's all day sessions. I'm lucky if I'm able to walk unaided these days, and the stress of being out of the house, having to put my "people" mask on, be on so many narcotics, pay attention for extended periods of time, AND keep going for hours at a time is going to be a miracle to survive. I SO want to go--to see my peeps, to hear God's word spoken, to be inspired. But I really don't know if I'll be able to come out of this without a hospital visit. I really don't. This goes through Saturday afternoon. Then, if I want, we have our annual church BBQ bonfire where we do a major neighborhood outreach. I am usually the lead facepainter, and for the full 4 hours or so of the event, I am sitting in a chair with an undending line of people wanting ME to paint their face. It's fun, but I'm thinking no...not this year). Then there's church on sunday (if I can go... =/) and Co-op on Monday and Tuesday. *deep breath* But Wait! There's more!....*glower*

My mum is leaving for Albuquerque, NM on Tuesday after she finishes teaching science to join my dad, who's leaving this Sunday. He has a job and a conference (I think...he may be speaking. I'm not sure). They'll be down there from Tuesday through Friday. And you know what that means? I'm in charge of a two story house with a brother in public school who I have to pick up from swim practices in the evenings, a teenage sister with art and piano lessons, two therapy sessions, two IV treatements, two tutoring sessions (if not more...I like tutoring...but this week will be hard!) AND my 3 year old brother and his needs, nap schedules, and everything...for me alone to deal with.

Ok. So that's a LOT for a healthy person who doesn't have a sucky sleep schedule (if you can call it a schedule...), major health issues, and narcotics that prevent me from driving. So, for most of that week, I will be having to NOT take my most potent pain killers and live in agony. Not fun, to say the least.
Thankfully, I think my mum arranged with my grandma for her to pick the littlest one, Michael, up from preschool on Tuesday, taking him to her house through Thursday or Friday so I can just focus on Matt and Sarah. That way I only have to cook for them, or show them the fridge and say "Eat". =P Maybe I can even pick up Chinese and/or pizza for them sometime. Meh. Who knows.

But it's going to be a freaking hard week for me. And that's AFTER the True Woman conference, which I'm iffy about in the first place.

Ok. So HERE'S the good part. The week AFTER....we're moving out of our house. For TWO WEEKS. Because that's when the contractors will be moving IN. So I'll have to pack up everything to go stay somewhere else. We haven't figured out exactly where yet.

You see, Mum, Matt, Sarah, Michael, and Dad can all stay in the two bedroom suite they found. But while we could have us all stay there, there's one problem. Me. I sleep at all hours, I am sick, I'd keep Sarah up at night and she'd keep me up during the day...
I...I couldn't do it. I need my sleep. And to not have everyone putzing around loudly while I'm trying to do so.
So, we're looking at a separate studio in the same building for me (which would cost about $100 more a night...yikes!), or having me move across the street to stay with a neighbor. We're also just trying to scramble and find other alternatives if possible.
Anyone in Carmel have an open room? I won't need much fridge space, because I only drink right now XD
Anyway.
It's going to be a two week misadventure there.
And there's my month.
Shot in chaos, mayhem, and possible bodily destruction.
*long sigh*
Yow.

So! Please pray! AHH!!!
I'm getting stressed. All that plus doctor stuff, plus catching up on homework, plus plus plus plus! Ugh-a-bug.
My life.Is.Hard.
But then again, everyone's is at some point. I'm just getting a large dose of my life's hardships all in one bracket of years. *le-sigh*
So, I'm just going to continue writing encouraging notes to my sister when she's stressed about school, calling up my friends, and talking to my brother about his costume for Spirit Day at school. 
By the way....if any of you girlies out there would like to call me, or have me call you, during the 6 hours of sheer boredom at the doctors on Tuesday, that would be fab!.....that's a LONG time to sit in a doctor's office =()

So, until next time.

(I hope to have SOME good news....maybe...haha)

Love you all!
Be Well!
-Rae <3

2 comments:

Calandreya said...

Good grief, Rae! That IS a ton for a healthy person, much less someone in your condition.

What do they think is causing the heavy metal poisoning? You're not eating, so it can't be fish, which would be a potential source of mercury.

I sure hope it's not as hard a month as it looks like it will be!

Rae Hitchings said...

Yes.
It. is. a. lot.
=|
But I'll do my best to survive! I will survive!! *rock song plays in head*
Ahem. Anyway :P

The heavy metal poising happens over an extended amout of time. Again, since my liver and kidney's haven't been working top notch, I've had high blood toxicity (high magnesium and calcium in my blood). The same can go for metals that would normally be flushed from my system.

And I'm praying that some of the things, like the kitchen remodel, will be pushed back a week or two. We'll just have to see.

-Rae

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