Doctor, doctor, give me the news...

...

So, anyway... I've been on the Parkinson's medication since Tuesday night, and today has been mostly spasm free. My pain levels have dropped significantly, since I'm no longer dislocating and subluxing every 2 seconds, and the side effects of taking the meds have started to wear off.

YAY!

In other news... On January 19th I had my appointment with my geneticist. He put in a request for an MRI to check for a Chiari malformation. He told me not to be surprised if there was a 6-8 month wait before I got it. I got a call today saying there had been a cancellation, and they can do the MRI on Monday!

YAY!

So I would guess within the next 3 weeks, I should have a diagnosis of some sort, and a lot more information under my belt (if all my test results make it to the people that need to see them, and I get called to discuss them, that is...).



This is my best friend's baby, snuggling up in one of the blankets I made for her. Isn't she precious?

Parkinson's Pills

The Parkinson's medication seems to be helping... Which is really nice (albeit somewhat scary). I take one pill every 8 hours, so I've taken 2 so far. Next one at 2pm. I'm still getting the spasms, but they don't feel nearly as powerful, and they are more spread out (time-wise).

I don't know if it's the pills, or the pain from so many spasms, dislocations, and subluxes, but I didn't sleep more than an hour last night.

My left shoulder, which has been hit the hardest by the dislocations and spasms, feels like it's on fire. I just want to go lay down in a snow bank.

I'm not sure if the dose is too small, or if I haven't been on the pills long enough, but the one I took at 6am started to wear off around 10:30am.

I am so EXHAUSTED. I feel like I ran a marathon, on my hands...

*SPASM* ... *SPASM* ... *SPASM!!!!!*

Since early last week, I have been experiencing upper chest/shoulder spasms with increasing frequency. I've had them once or twice a day for several years, but in the last week it has gotten progressively worse, until yesterday the spasms were occurring no more than 10 minutes apart.

It is very difficult to do anything, and I don't know what is causing them. They seem to occur more often, and more severely when I am trying to use both of my hands simultaneously. They are very painful, they are causing my shoulders to sublux, and they are making it somewhat difficult to breathe normally.

Preliminary research on the internet suggests they could be caused by TSH imbalance, iron deficiency, renal failure, or diabetes. I am currently awaiting blood test results which could possibly rule out 3 of those.

I am once again wondering "Why me?" What else could possibly go wrong?

I shall be going to the walk-in clinic this afternoon, once I get off work, and possibly call my chiropractor for an appointment. Maybe even a masseuse. Anything that could possibly help would be nice.

I am exhausted.

You may call me "Spaz," I won't mind.

Any and all advice would be greatly appreciated.

On a lighter note, my best friend had her second baby, a healthy little girl on Thursday, and she is so cute, and little (a bit over 7 pounds). I made her 2 little blankets, and her big brother (13 months) loves them!

Edit* For updates, I occasionally comment on my own posts.

Update: After work, I went to the doctor, and he prescribed a medication for Parkinson's disease, as well as sending me for more blood tests.

Faith in the System

Mine has been somewhat restored!

Today was my annual appointment with my geneticist. He listened to my concerns, he agreed that I was NOT a hypochondriac, and he had a light bulb moment of insight as to what may be barring my path with TTC.

He is sending me for an MRI to check if I have Chiari, blood work to check my kidney function, iron levels (I appear to still be anemic), thyroid levels, and to see if I have Celiac's disease.

I will be scheduled for a follow-up appointment in 6 months, or as soon as the MRI is done, whichever comes first.

He also said he'd send me for a skin biopsy if my previously diagnosed "nickel allergy" rash doesn't go away by the next time I see him. (So far it's been "treated" with steroids, anti-fungals, antibiotics, antihistamines, and something else...? Most of which had no effect, and the steroids made it worse.)

So the "light bulb moment" was that my kidneys may not be allowing my body to absorb (enough of) the iron I'm taking, which would, combined with other things, render me infertile to some degree.

I think I need a tailor...

My body feels like it doesn't fit. Things feel like they aren't where they should be, or that they shouldn't be where they are.

I'm feeling less and less co-ordinated, and more and more off balance.

I don't know where I am.

I can look at my hands, tell them to pick up a cup of coffee, and watch them wander aimlessly for a while, before finally grasping it. Then there's the journey from the table/desk to my mouth... Then tilting it just enough to get the coffee in my mouth, without spilling it all over myself.

I feel like a toddler. Independent, confident in my ability to do everything by myself. Sure of my feet. But as an in independent onlooker, people can see that I can't do it all myself. I can't drink from a big kid cup, or walk without stumbling into things, unless I support myself against a wall, or counter.

I was supposed to be past this stage in my life. I already mastered the art of walking, graduated from a sippy cup.

Where will I be in 10 years? Will I have to go back to Velcro shoes? It doesn't seem too far-fetched.

Pretty Hats

It's Delurker day!!! If you're a lurker... Come out, come out wherever you are! ;) Tell me something interesting about you! Or just say hi. Or even "moo" for all I care...

On with the post:

So, I love how blogger randomly throws pictures wherever it feels like throwing them, regardless of how you upload them, which order, etc... But I do have photos, and they are uploaded, and they're hats! Yay!

The first one is my best friend's son's hat, and it's brightly colored camouflage, and it's too big for him, but SOOOOO cute when he's wearing it.




The second one, purple with the flower was meant to be for my niece, but it's adult size, and I don't know anyone who would wear it...
The orange, pink, green, and yellow one was for the gift exchange at my dad's family's Christmas. It was labeled as a Gag/Girl gift, and was well received.

The purple, purple, blue and green one went to my best friend for Christmas, as it is much warmer than the one I made her for her birthday.

This one is dark blue, and grey, with a grey edging. In the right light it looks like it's blue and silver. It went to one of the ladies in my hat club, and she LOVES it. (YAY ME!)

My current projects include searching for yarn to make my hubby's sweater, and crocheting 2 baby blankets for little ones set to arrive sometime this month. One blanket is for a boy, and it will be green and blue wavy stripes. The other one is for a girl, and it will also be wavy stripes, but they will be alternating between solid orange, and a confetti looking white/orange/white/green/white/blue yarn.

EDS update: Between under-sleeping, and not having any energy, and oversleeping to wake up with multiple dislocations, I have managed to be late for work twice this week. I think it's the hormones again... Seems to be worse (A LOT WORSE) on the days just after I ovulate (tmi?).

Edit: The more I try to fix the placement of the pictures and text, the worse it seems to be getting, so what it looks like now is about the best you'll get. Sorry.

I Win!!! (So do you, 'cuz you get PICTURES!)

So, I've had my pictures sitting on my desktop for almost 2 weeks. I tried in vain to upload them 174 times! My computer kept giving me error messages. I FINALLY figured out why I was unable to upload them TODAY... Grrr...

So without any (more) further ado...

(NOT) My brother's sweater (but one just like it-only a little smaller). This one got sold to my co-worker. He gave it to his daughter for Christmas, and she didn't take it off for 4 whole days!
Next, My friends' ridiculously long scarf (hard to tell from the picture, but it goes to the floor when it's wrapped around her neck once).

Next is my niece's bunny. BUNNY!!! He's a secret bunny, he has 2 big ears, so you can tell him your secrets, and no mouth, so he has to KEEP your secrets!

BUNNY! BUNNY! BUNNY!

And then, the blue bear, with his wobbly head... And his pretty orange scarf!

That's it for now. More pictures hopefully tomorrow... They'll be HATS!!!