All Alone

So, I've been meaning to blog on this subject for a while. I've found that a lot of people with any kind of rare disease, disorder, or illness, have problems relating to people, because they don't understand all the issues associated with it. I have a different problem. My best friend has EDS, the same type I have, and she has known her whole life. I didn't find out until I was into my teens. So, my friend has it a lot less severely than I do, and she can't understand the constant pain I'm in, or the frequent injuries any more than "normal" people do. She has only ever injured herself in an EDS-related way twice. Once when she dislocated her knee dancing, and once when a nurse dislocated her shoulder trying to pull her into a sitting position when she was still loopy from the drugs they gave her for her c-section. Her knee was put back into place, and she had it properly immobilized, and was in a wheelchair for a few weeks, then she got better, and now she doesn't seem to have any problems with it. She says her shoulder still bothers her a little, but it's only been a few months.

I, on the other hand, sublux my shoulder so often I barely even notice anymore, and dislocate it frequently. I can pop it back into place 'easily' and I've never been hospitalized with a dislocation. By the time I make to the hospital, or doctor there is nothing "wrong" with my joints, and they can't understand how it could have been dislocated, and popped into place again in such a short amount of time, and with no medical help. With my left knee, I dislocated it severely, and when I tried to stand up, the weight of my leg pulled it back into place, and I couldn't get a doctor to listen when I said it was dislocated... They simply didn't believe me. They told me I probably just stretched the tendons or ligaments, and that I should wear a brace when I walk or stand and it should be fine in a couple of weeks. This happened almost 3 years ago, and I still walk with a limp.

Okay... so back on topic... Even though I do have a friend whom I've known since I was a year old with the exact same genetic disorder I have, I still feel all alone, like I have nobody to talk to that could possibly understand me. Oh, and my husband has a disorder similar to mine, but all of his joint issues have specific reasons behind them. His left knee is screwed up because he was hit there with a baseball bat years ago. His hip is screwed up because of a work related injury. So again, it's hard for me to talk to him, and to have him understand that even though you can't SEE anything wrong with me, I am in pain all the time. Since I dislocated my right knee (not as bad as my left) I occasionally don't walk with a limp, and people close to me assume it's because I'm not in pain, but the reality is that I am in more pain than usual, it's just pretty even between the two knees, so I walk without a visible limp.

Sick

So, I'm sick.
I have a sinus infection. The first sign that anything was wrong was last Wednesday, when I was achy all over. Then Thursday morning I woke up, and I could barely breathe. I went to work anyway, but they sent me home by noon, then I went to the doctor and got some antibiotics. I was off sick Friday too. Saturday and Sunday I was too sick to do anything, except a little crocheting. I finished 2 more blankets.
That's all I've got for now.

Someone invented something...

So... I always read bookofjoe, and I happened to come across something that I personally think would come in handy for gimpy/klutzy people like me.

http://www.bookofjoe.com/2009/02/roll-n-pour.html

That's all I've got for now... the stupid keyboard at home doesn't like me, so I'll have to keep posting from work.

An Extraordinary Day in My Life...

So, last night, after a 9 hour shift at work, I went grocery shopping... I didn't have any quarters with me, so I couldn't get a shopping cart, so I had to use a basket... Not fun with my shoulders. So I walked around the store, and I bought all the ingredients I needed to make a stew, plus a few snacky things, and when I was on my way to the cashier, it felt like my left elbow was going to dislocate. As I was reaching over with my right hand to take the basket away from my left hand, my left shoulder subluxed. As soon as I got the basket (which I miraculously didn't drop) out of my left hand, my shoulder made that gross sound it makes when it "pops" back into place. I made it to the cashier, and unloaded everything from the basket, using my right arm, cuz my left arm was pretty much useless still from being subluxed, and I'm standing in line, and my hip subluxed, because I was leaning. I almost fell over, and the guy behind me looked at me like I was drunk or something. I made it from there all the way home with no further mishaps.

When I got home, I decided to make the stew I had just bought the ingredients for. In order to do that without driving myself crazy, I had to sweep the floor, and do the dishes, and clean off the counter, before I could start making the stew. I had been avoiding the dishes for a while, so I had to wash quite a few. When I was done washing the dishes(amazingly-no dislocations involved), I took a break to let them air dry, then I put them away, washed the counter, and started prepping for the stew.

When I had the stew ingredients in the pot and cooking, I cleaned up the counter again, then took another break for the stew to cook. When the stew was finally done, it was 10:00 at night, and I wasn't hungry. I watched a few episodes of Charmed, while the stew was simmering, and after it was done I watched another one before I put the stew in containers and into the fridge. When I was finally done, I sat down to read the last bit of the chapter of the book I'm reading ( The Mammoth Hunters, by Jean M. Auel).

My hubby got home somewhere around or after 11:00 from work, and I told him all the stuff I did, and he looked at me, and asked (in a not-unfriendly way), "Do you want a pat on the back?"

I'm sure if I was a normal person, my day would sound pretty routine... Work, go shopping, come home, tidy the kitchen, and cook supper... Nothing spectacular right??? But for ME, it was a HUGE day, and I was pretty darn proud of myself.

On a sad note, today was supposed to be my dad's birthday. He passed away 2 years and 3 months ago. He was a tow truck driver for AMA. He worked there for many years, and as a tribute to him, they put his old truck number on all of the trucks in the city, except the new ones... They haven't gotten around to it yet. I saw an AMA tow truck driver today, and I asked him to tell the people at AMA to PLEASE put my dad's number on the rest of the trucks. He went to his truck, and phoned someone at AMA, and told me they'd do it soon. I also told him to let everybody at AMA know that today is my dad's birthday.

Happy birthday dad, I wish you were here to celebrate it with us.

I'm Seeing Stars...

I just thought I would share some of my crocheting projects with you. I made the blue blanket and the white pillow for my best friend's son, and I made the purple blanket (with 2 days notice) for my other best friend's daughter. I have made more blankets, and I made scarves for most people in my family for christmas, but these are the only ones I have pictures of at the moment.

I started crocheting again, around September of last year, because I felt like I should do something, but I can't do a lot of physical stuff. So this is something I can do, and feel like I've accomplished something. I can't crochet for too long, because after a while it starts to bother my shoulders and my wrists, but I can keep at it long enough to feel like I've accomplished something.

And one of the awesome things about it, is I can still watch t.v. and movies, because it doesn't take too much concentration.

I will try to post pictures of my other works *shortly*... but be warned... I'm in love with star-shaped afghans right now, and I'm trying to perfect my technique, as the first 6 or 7 rounds tend to "bulge out" instead of laying flat like they're supposed to.

Vitamin C

Okay, so I've been doing the vitamin C, 2000mg per day for a while now. I haven't noticed any differences yet, but I'm going to keep taking it.

I'm trying to find a way to convince my doctor to let me try prolotherapy: a sugar solution is injected into damaged ligaments or tendons, the solution can create an acute and localized inflammation, which can stimulate the body to repair itself. I think that with prolotherapy and large doses of vitamin C to help rebuild the collagen, there may be a chance to do some good.

The biggest issue I'm having with prolotherapy, is that the doctor wants to try it on my right shoulder first. I'm right handed, and I'm a receptionist... If the prolotherapy doesn't work, or if I'm in too much pain to write after getting the injection, I will be unable to work. On top of all that my right shoulder is my "good" shoulder, and if I couldn't use it, I wouldn't be able to drive any more either. I figure, try injecting my bad shoulder first... If it gets worse, I won't be much worse off than I am now... I can't lift more than 5 pounds with my left arm, I can't drive with my left arm, and I have to be careful picking up a cup of coffee... But, if it gets better, my quality of life would be improved.

If I do get prolotherapy, and it works on my left shoulder, I would then go ahead and get it done to both of my knees, then my hips before I would go for my right shoulder.

Ummm... New news... My niece is talking-ish. She knew my name when I saw her on the weekend, for the first time since Christmas.

Less exciting news... I have a cold. It sucks. My normal pain has increased, and I am experiencing more fatigue than I am accustomed to.

"Not in my job description"

I am a receptionist at an auto body repair facility. There are 9 employees. Yesterday and today, we're short 2 employees, so I get to do things that are NOT in my JOB DESCRIPTION.

I get to wash cars (some of which are standard, bad with my left knee). I have to go get lunch for the office, which includes walking through the mall, and carrying everything back to my car.
I know it doesn't sound like much, but the amount of pain involved is exceptional.

I've also decided to start myself on a high dose of Vitamin C, 500mg 4 x daily. Vitamin C aids in the production of collagen, and all the information I've found tells me that there are practically no ill effects if you take up to 2000mg per day. (Do not mistake this for medical advice, as I am in NO WAY qualified to give medical advice)

I will try to keep anyone who cares updated as to whether this helps or hinders in any way.