I had to take a leave of absence from work, file for FMLA, and basically decided with my husband (J), to try something new. To explore unknown territory, because the well-trodden paths weren't working.
However, I woke up (so, so early) this morning with more than a bit of trepidation. I participate in a few online support groups (Inspire is amazing - my other is on Facebook) and had heard horror stories about pain management programs like this. Not from people with "normal" chronic pain (if you can every truly consider chronic pain normal), but from other people who suffer from EDS. We're different. We're zebras and if you try to treat us like horses, it's most likely going to backfire.
I arrived and immediately was given a binder full of program information and a textbook. A textbook. I felt like I was in school again. High school or college - didn't matter. (And yes, I already have homework. Ridiculous!)
My first appointment was with Dr. R, my pain physician, who was the physician who did my initial evaluation & who will be with me through the entire 4 weeks. Immediately he's asking about my sleep (which sucks, of which he's aware, but he prescribed a medication the last time he saw me. It didn't work). This will become a theme for my entire 1st day. "How's your sleep?" "Do you wake up tired?" "How many times in the night do you wake up?" "How long does it take you to fall asleep?" "Do you nap?"
All of the talk about sleep just made me want to sleep. Especially since I slept like crap last night.
Then it was on to group psychotherapy. I have the same group of people with me for 4 weeks, and surprisingly, I was not the youngest one there. Obviously for HIPAA (HIPPA? HIPPAA? Oh, I dunno. Privacy.) reasons, I can't talk about them, but it was strangely nice to know I wasn't alone in this battle - and that I wasn't "abnormal" for being so young.
This was followed by a nurses' consultation, which was about... you guessed it - SLEEP. Seriously. Everyone was yawning by the end of the hour and it was pretty hilarious. I was given some pretty strict parameters when it comes to my sleep and sleep habits which are going to be difficult to stick to, but J has promised to help me along the way. BEDROOM IS FOR SLEEP AND SEXYTIMES ONLY, PEOPLE. I also have a strict schedule. I must take my meds at the same time every night of the week, go to bed 1/2 hour later, and wake up at the same time every day. Waking up at 6:30/7am on Saturdays and Sundays is going to suck donkey balls.
Oh, also? No naps. NOT FAIR.
Then it was onto my Occupational Therapist, E, who is amazing and talented and I will have so much more to say about her in future posts. After that was my Physical Therapist, R, who was really surprising because she made me repeat "Ehlers-Danlos" 3 times to make sure she had the spelling right. She wants to do research before our next session. This is fairly awesome news because (as fellow EDS-sufferers can attest to) it isn't often that a medical professional admits not knowing something about a condition and openly admits that they need to learn more. So R's response to my condition was so much better than I could have anticipated.
The low point of the day, honestly, was relaxation group - but that was because I was directly next to a guy who doesn't speak English and could have cared less about the relaxation techniques and was frustrating his interpreter to no end. I'll make sure to sit on the other side of the room next time.
Anyway, in order to stick to my strict sleep schedules, I have to go now... I have so much more to say, but I will have to wait for another day. Aw, rhyming! I'm so cute.
Goodnight, my spoonies! (Something else I will explain in posts to come)
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