Living life with multiple chronic illnesses…. and some other stuff!

Monthly Archives: August 2008

Ok, so I’ve been bad lately and not updating. I apologise. :-).

Anyway, my fatigue has been crazy lately. Most days I have some sort of appointment or another and afterwards… the couch, and only have enough energy to read.

So, had the second appt with the Geneticist. My bro is fine… WHOOT! So, the geneticist thought it might be a good idea to get a skin biopsy done. No Prob. However, after talking with the lab and with her mentor (the head honcho geneticists) and explaining my case, they all agreed that a skin biopsy won’t really tell them anything more that they don’t already know. So no skin biopsy, although, the Head Gen. does agree that I have EDS type III… or, Hypermobility type EDS. DUH! Oh well, at least it’s officially typed and letters are going out to dr’s and specialists to hopefully get a better treatment plan going.

PT is going well. I’m doing all sorts of exercises (that are very conservative, I guess) that will hopefully strengthen my muscles. The other day my SI joint subluxed and I think it shocked the PT. She’s familiar with the condition, but I don’t think she’d ever had someone do that… haha. She got it back into place and all was well. Except, of course, the crazy spasms that I get everytime something subluxes or dislocates. I will be getting a brace for my pelvis to help hold it in place. My pelvis, as I’ve been told, is like an earthquake and very unstable. Most of my issues are from that. Whoot. Also, since the nerve pain is getting worse in my arms from using the forearm crutches, I am not moving onto a rolling walker, or rollator. Fun times…

As if I don’t feel old enough between the braces, the crutches and the walker… I now have to wear READING glasses. My eye dr tried to give me bifocals and I told him flat out “No,” thank you, but I’ll deal with two pairs of glasses. So I now have three sets of glasses I carry with me at all times. The ones on my face to see in general, the ones for reading, and the Rx sunglasses because I can not tolerate contacts. Speaking of, I also told him about my dry eye issues and turns out… I don’t produce adequate tears and have virtually no tear film! Well no wonder my eyes have been bothering me. I have a myriad of eye drops to test out before he gives me something prescription. Since I also have dry mouth issues, and always thirsty… yup, you got it, might be looking at a possible Sjogrens Syndrome dx as well.

I suppose that’s about it for now. I promise I will TRY to be better at posting.


Here’s a picture of one of my splints. It’s more supportive than the other ones, especially in the thumb. They are hard to work with, but I’m managing.

So, it’s been a while… I know. I’ve been so crazy busy with drs appts and PT/OT that by the time I get home I am plumb exhausted. I will try to be better.

Anyway, on with the updates. I now have two custom splints for my wrists. (they aren’t easy to type with… blah). I’ve noticed a bit more stability, but it’s so difficult to do things with them. Also, I have to use both sticks (fore arm crutches) because my spine is twisting and causing all sorts of issues. I need to use them until we can get my back more stable… hopefully, we’ll be able to do so. I go back to the geneticist with my mom and brother for his evaluation and to hopefully be able to type us to get a better hold on a treatment plan.

I’m still working on the website, I have most of a homepage built and ready to launch. I’m having a hard time finding where to start with the other pages. I may just have to sit down and play with things to figure out what I want. It’s giving me something to do. So that’s good!

I’m also trying to get a decent schedule going to do some sewing. I’ve made a couple bags and they’ve come out really cute. A friend actually said that she would buy them from me (I ended up making one for her birthday..hehe.), so at least I know they will sell… to a few at least. I’ll have an etsy shop linked to my website as well as here.

Just got back from camping… as a disabled individual, but I will make a whole other post about that. Was interesting and exhausting, but still fun.

And for some good news… boyfriend got a job!!! Whoot now we will have two semi incomes coming in. haha. It’s something and very grateful for being able to still hang on with what little money we have. Hopefully things will start getting better.

I’ve been busy, sore, etc… I havent had the energy to type anything. It sucks. I have much to say, but not the energy right now. Instead I will leave you with a video of an amazing little girl who challenged the United Nations.