Category Archives: Disability

Posts related to living with a disability.

Stem cells are all the rage…

We hear so much crap about embryonic stem cells… but the fact is, last I checked there have been NO successful trials of anything useful using embryonic stem cells. There’s no way to control them, and they end up producing tumors.

Adult stem cells, however, along with cells from cord blood, are REMARKABLY useful, and are being used SUCCESSFULLY in trials for an enormous range of conditions. We don’t hear nearly enough about adult stem cell research. More remarkably, in the research I’ve done, I’ve yet to see any report of side effects!

They’re just starting human clinical trials, but so far they’re absolutely amazing.  MS, ALS, Auto-immune diseases, CP, Autism, Alzheimer’s, Spinal Cord Injuries, Diabetic patients with impaired circulation, nerve damage… all things for which there has been little to no effective treatment for in the past are suddenly on the brink of a possible cure… and it’s not even an over-statement! 

I’ll never be able to get into any clinical trials, my condition is unique and rare.  But once some of these studies are completed, and the treatments are stamped safe by the FDA, they’ll eventually be available to the rest of us.  There’s a real hope, for the first time ever, that the medical community might actually find a cure, or at least a significant  treatment before I’m too old to care.

If you wanna read more, you can check out some of the articles here:
http://www.cellmedicine.com/news.asp

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Breaks & Blocks

I feel like I’ve been absent from most everywhere for weeks.  I think I forgot to check into Flickr for something like 2 weeks straight.  I only go to Etsy once in a while to convo a customer or relist expired items items, and I haven’t posted on here forever.  The only thing I’ve kept up with is PoshPoints, because dang, I’m getting some awesome stuff through there :P

I had my brother’s youngest girl (13) for a week the week of the fourth, and started a new part time telecommuting job.  Once my niece left, I think I slept for almost a week straight.  I finally made a phone call to a friend:

Me: “I’ve been tired for a week straight, I can’t get ANYTHING done, and I can’t figure out why!  I’ve been taking my pills regularly (I got that new daily pill box thing and have been using it) any ideas?”
Him: “Uhm, how many muscle relaxants have you been taking?”

So yeah, I felt like an idiot, because even though I’ve been taking muscle relaxants for years, and even though I’ve been measuring out my pills into my daily pill organizer, and even though I have been actually remembering to take the pills I put out for a change… I somehow managed to FORGET to put out ANY muscle relaxants for an entire week! 

My muscles stay spasmed if I don’t take the relaxants, which uses way more energy and zaps my strength, so that’s why I’ve been sleeping all day,  and been more sore than usual.  Sheesh!  So I’m finally back taking ALL of the pills I’m supposed to, and I feel much better.  I’ve started getting stuff done again, and my brother’s middle girl (15) is staying here this week.

Today we painted.  All day.  I think we used every paint brush I had out, and something like 20 different paint colors.  I finished some NameBlox™, a couple of Birth Announcement Blocks that were ordered for twins, painted 4 sets of 8 1″ colored cubes, a pair of 1″ color dice, a set of “painted yahtzee” dice, 4 pairs of standard dice (stained, not painted), a set of dice with 18kt gold pips that look awesome!, and uhm… oh yeah about 6 NameBlox™ benches.  Whew. 

Elizabeth painted animals and designs on every little piece of wood she could find, I’m not quite sure what’s she’s doing with them all, but I’ll try to upload a pic to flickr of her creations sometime in the next few days.

I also found time to fix an awesome dinner of Zataran’s Herb Rice (with pieces of chicken breast instead of the hamburger it called for), sauteed zucchini and homemade cole slaw.  And we spent about an hour trying to get Elizabeth into a maple tree with a hand saw so she could help get a couple of limbs down that’d been hit by lightning (she got up there, but dropped the saw, and by the time we got it back up to her she was too tired to fight with the limb that refused to come down lol).  We’ll probably try again tomorrow because she really liked the idea of being that high up in a tree.  The limbs have been dead for a year or so, but they twisted funny and are hanging on by a bit, and refuse to want to come down the rest of the way.

How’s that for an update? lol

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Bizarre Evening

So I went to church this morning, and the family that does worship on Sunday mornings made the following announcement: “Not this next Sunday, but the one after that, we’ll be singing at such-and-such church and would love it if ya’all wanted to show up and worship with us.”

The church I go to doesn’t have Sunday evening services, which I hate because that’s the service I’m most likely to be able to attend on a regular basis… so, I’ve been kind of going to different area churches every Sunday evening just to fill the time. Hearing this I thought, great! A place to go.

Once I got home I lost my mind and convinced myself that they had said they were going to be there *tonight*. I couldn’t remember what time tonight though, so I tried to call the pastor, who didn’t answer his phone, so I figured it had to be either 6 or 6:30 and off I went. I got there at 6, and no one was there, and the sign said service was at 7, so I went wandering around town to blow time, and got a big shake at UDF.

Here’s where the evening got interesting lol. I went back to that church around 6:30, and decided to just read some while I was waiting… 6:45 came and no one was there yet, but this is Ohio, so I figured maybe it’s just one of those churches where everyone’s always running late instead of early.

At around 6:50 one car pulled in. Two old guys walked up and peeked around the back of the car towards my open window and one said “can we help you?”. This seemed like a rather odd question at a church on Sunday evening, but I just told him I got there early and was waiting because so-and-so was supposed to be singing there tonight. To which he answered “Uhm, I don’t think so”. I explained better who it was, and he said “Oh, they’re supposed to be here on the 23rd I think”.

Me: “Oh. uhm. well… are you sure?”
Him: “Well you might as well join us anyway”

So I went in. I’m not all that observant, and didn’t realize until I shook his hand that he only had half of his right hand and a hook on the left… shaking three fingers felt a little strange lol. He had to be in his 80s. The other guy is (I found out later) almost 87.

They were the ONLY two people there! Had I not been there, I imagine they would have talked a bit and went home or something, but since I was there.

Him: “Well, I wasn’t going to preach tonight, and the guy that normally does on Sundays called to say he won’t be coming. You don’t preach do you?”
Me: “Uh… no. I can sing but I don’t preach (literally lol).”
Him: “Oh, you sing?!?…”
Me: “Uh, yeah, some.”
Him: “Well, you wanna sing? Morris sings some…”

So I spend the evening singing random hymns (thumbing through hymnals and song booklets trying to find songs that we all (or at least two of us) knew. Most bizarre, but it actually turned out to be fairly fun. I’m always up for singing, and since there were only two of them I didn’t really feel on the spot…

I think they appreciated having someone else there, especially since, as it turns out, they had to drive over 45 minutes to get to the church tonight.

So they’re hoping I come back lol

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Filed under Disability, Humor, Music & Songs

Little things…

My headache has now been gone for two days!!!

I’m almost certain the problem was/is my neck, so I’m being very careful to stay conscious of how I’m holding my head, make sure I don’t sit in my chair with my hair up, and make sure that I don’t hold the phone with my head when I’m talking on it. This seems to be working okay, my neck is still out, but much better.

I tried to draw a bit yesterday, since my arm had been okay for a few days. And now it’s back to being messed up again… been mostly useless all day. Looks like I’m stuck with a useless arm, and if I want to write or draw or anything I’m going to have to do it with my teeth :(.

Using my hands for this kind of stuff has hurt for years, but I always did it anyway from time to time, when I figured it was worth the pain. Now it’s not just pain, but my arm becomes useless… there’s not many situations where writing a bit is worth losing an arm for a day or two… geez

C’est ma vie. At least my head’s not hurting today.

Tomorrow I get to go see why my car is spewing coolant again.

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leaks and pains

Just leaving an update for anyone who cares…

My arm was out for about a week this time… It stopped working on a Wednesday (the day after my car blew that gasket), and was completely useless for about 4 days, then I had about 3-4 days of partial use.

It’s not back to normal even now, I can’t lift anything heavy and it’s randomly dropping things, but it’s back to semi-normal and it doesn’t hurt to look at it.

My car was out from that Tuesday through the following Thursday I think, borrowed about $600 to fix the coolant leak, and it seemed to be running okay again, but I didn’t drive it much.

Then I went to the neuro Monday (my aunt drove me down). He took his lunch hour to see me, and had some intern with him to show me off… turns out he had just presented my case as a case study at a conference too.

He tells me that if my arm goes out again, I’m just supposed to eat ibuprofin like candy (his exact words were “take a REAL dose” and then “people our size need at least 600-800mg every 2 hours”… “just make sure you take an antacid so you don’t destroy your stomach”), because there’s nothing else they can do for it. Great. He is sending me to an ortho that he seems to think is the best in the world though, so hopefully I’ll get some useful braces for my arms or something, and some new leg braces (for joy for joy). He also gave me some real pain pills too.

I got home from the dr office and crashed, threw my neck out sleeping in my easy chair with my hair up, and had a massive headache that kept me in bed most the time through Wednesday. Went to the store Wednesday night, wore a ball cap and my head stopped hurting, til I took the cap off and the entire top of my head turned read and hurt like I’d bruised it… what the heck? Didn’t stop hurting til Thursday afternoon. I woke up Thursday with a nose/sinus bleed, took a shower, got it to stop, then got a regular nose bleed. Got that stopped, got ready to leave, got in the car to drive an hour and a half and got the sinus bleed and bled down the back of my throat the whole drive.

Get to Urbana, and my dang car is leaking coolant AGAIN!!!

My niece had a nice birthday party, got to play with the kids, headache was gone and everything, sinuses stopped bleeding about the time I got there. Headed home late, went to bed early so I ccould get up and get the car to the shop.

So this morning I can’t get up… this afternoon I still can’t get up… finally pull myself out of bed only to discover that the blasted headache is back full force and my left eye doesn’t feel like it’s opening all the way. I examined myself in the mirror and it looks okay, and looks like it’s open all the way, or at least close to it, and if I try to open it further I can. If I start seeing double or catch myself losing coherancy I’m gonna go to the hospital though…

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Filed under Disability, Personal, Rants

sigh

I officially give up on trying to do regular updates. 

My arm appears to be screwed up again… that’s what I get for trying to use power tools (silly me trying to put LESS strain on myself by using a power sander, what the heck was I thinking, sheesh?)  If I get the use of my arm back, I’ll probably just lose it again as soon as I try to clean the house up.  I should just give up and find a nursing home.

I won a free meal in wilmington (half hour drive).. made a special trip to take advantage of it… car blew something on the way, I’m now spewing coolant, looks like from inside the motor… yep, I’ll be paying for that with my no-money-in-the-bank, electric-in-danger-of-shut-off, 2-car-payments-late, don’t-even-think-about-groceries self.  I’ll get right on that.

I officially hate my life, just in case it wasn’t clear. 

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Spoon Theory

This one is more of a personal entry than anything else, but someone shared this article somewhere today and I found it really well written. If you’ve ever wondered what it feels like to live with a disability that causes pain and fatigue, this is a good read…

http://www.butyoudontlooksick.com/the_spoon_theory/

I finally got to a dr today for the first time in a while and was pleasantly surprised to actually have a decent visit. I was really stressing out about it, but it sounds like I finally found a gp that knows what he can and cannot deal with, and seems perfectly happy to take the time to help me find a neurologist. He was also ok perscribing the meds I usually take without forcing me to go through more tests (that’s a first!).

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