Me and Matt went camping this weekend! So much fun!! Got there after dark Friday night, set up the tent by lantern light, then put the lantern out, sat in the field and watched the stars. And boy were they beautiful!!! Being outside of the city really made the sky light up! And there were more shooting stars than we could count. And all so big and bright and close! Marvelous. We sat there and talked for a couple hours and went to bed.
Woke up to a little rain Saturday morning. No big deal. It was nice and cool. Went to Elephant Rocks state park to do some climbing! I've never been there and Matt hasn't been there since he was a kid, so that was a lot of fun. Even if I did hurt all over. We had lunch while we were there and climbed around some more before heading over to the Shut-ins to climb some more and swim.
I didn't realize that the shut ins were that much intense climbing in the water, so my footwear was not at all appropriate, making my job that much harder. But it was so much fun to play on the rocks and splash in the water and swim around. And when we finally got to some pools and waterfalls where we could sit, it felt so great! Took all the stress and pressure off all the aching joints in my body!! But we had to do more climbing and hiking to get out of there and back to the car, so I was beat by the time we sat down to eat a snack when we got back. My hands are very bruised up, and I have scratches and bruises all over, I dislocated more fingers and toes than I can count (usually the same few over and over again), and everything just aches. But it was worth it. Because we had fun. I'm definitely going to need a lot of tylenol for work tonight, and I'm not even going to wait for last rounds to put my braces on (knee and wrist for work)...those are going on to start the night.
And it certainly didn't help that we didn't have enough padding to sleep on, so my body was not supported at all. I was just laying on all kinds of pressure points and sore spots all night. I woke up all kinds of stiff and achy and sore both mornings. We'll have to buy better sleeping gear for next time.
Woke up to thunderstorm this morning, but not enough to flood us out - I kept waiting for the sirens to go off - and then packed up our stuff and left. My gut is giving me fits because of something I ate that it didn't care for...cheese on my sandwich or super-flavorful Tomato-basil potato chips, I'm not sure which, but IBS!fail is the name of the game right now.
Everything is pretty well unpacked and put away. I laid out all the wet stuff when I got home to let it dry, so I just need to roll the tent back up and stuff it in the bag and put everything back in the camping tub that belongs there. And put the tub back in the storage room.
Laundry will be done tomorrow.
After my doctor's appointment. I see the rheumatologist tomorrow. I'm nervous. I still don't know what I'm going to do if she tells me she doesn't think I have EDS. I'm not a doctor, but it just seems to fit. Considering nobody else has been able to give me a better answer, I'm willing to go with what fits now. I know there's no cure, so having an answer doesn't mean all that much to the naked eye. But having an answer means a lot when you've known for so long that something was wrong that you just couldn't put into words for anybody else.
I really really hope this goes well tomorrow. I just want answers. That's all. I know Matt doesn't understand still, he had to ask me a couple times why I was "hoping" this is what I had or why I would "want" to have this. But that's not it. Nobody wants to be sick, but when you are, you want to know what's wrong with you, you want a label to slap on it. It makes it easier to explain to people when you trip and fall over all the time, when you're tired for no reason, when you hurt and ache and crack and pop like an 80 year old, when you want to scream because you're in pain but nobody knows because you never talk about your pain, because there's never been a good reason for you to hurt....
I might need a little extra prayer tonight and tomorrow. That's what I'll work on.
I understand. I didn't have a diagnosis for a long time, and in middle school, and high school, I had no way of telling the P.E. teacher that I couldn't do things. I spent most of those classes either yelling at the teacher, or being sent to the office, because I was belligerant. When I finally got my diagnosis, I was a bit rude about it, and rubbed it in the noses of my teachers. "See, it's NOT ALL IN MY HEAD!!!"
ReplyDeleteIt was such a relief to go from "accident prone, with a bad attitude" to "Ehlers-Danlos Syndrome, Hypermobility Type... High risk of injury with little or no trauma."
Having the diagnosis earlier might have saved me 6 broken wrists, a broken ankle, and other various injuries.
You're in my thoughts,
BubbleGirl
(it's fabulous that I'm only just now getting these comments....way to go gmail :P )
ReplyDeleteYeah, I was always the hypochondriac or needed to tough it out or just go out and have fun. But couldn't get it across to people how tired I was or why/how I was hurting, that I wasn't making it up. So I stopped telling people that I hurt. That's why my docs are slightly confused now that I've never really been on pain meds, never had much therapy, or really anything leading up to this but they see that it probably is in fact EDS (I was given a prelim diagnosis by the rheumatologist, she wants the geneticist to confirm...my guess is that she'll tell me it's classical type).
And apparently that's how it goes for a lot of people...such is the day in the life of a rare genetic disorder, huh. *eye roll* I'm glad you have your diagnosis and are working through therapies and issues though.
We're all in this together!