Monday, August 12, 2013
The person who was coming to help me is apparently not coming anymore. So tonight I did some chores. It's been 6 weeks and things really needed to get done. Also, I'm seeing the new neurologist for the 2nd time tomorrow (the one I had to email to say I need my doctors to be team players and not blow me off) so everything I did today is going to DESTROY me for tomorrow - meaning he'll get to see my truths! Luckily I was able to get a ride for the appt. I'll be lucky if I can walk tomorrow!
I vacuumed my entire house (probably 400-500 sq ft of carpeting - I rarely move furniture so those areas are skipped - plus the corners in the bathrooms and kitchen), changed the sheets on my couch/bed, and washed the disgusting and smelly sheets, the blankets, and towels. I finished by taking a shower. Through all this I was doing Viggle and some mPoints.
Every joint is SCREAMING at me now. Even my achilles feel like they've been torn slightly - they hurt so bad. My legs have given out a few times, and earlier I had stabbing pains either in my liver or gallbladder, which was a new sensation. It's gone now and there's nothing any doctor will do, so I just get through it and move on. So many of my joints are now cracking, crunching, and grinding that a few times I had to make sure I didn't run something over with the vacuum because it's so loud and sharp. This is why I'm NOT supposed to do this stuff, but when no one else is going to then I have to. Let's hope I can actually wake up tomorrow!!!!
I'm planning on cancelling my ARMHS appt on Tues because there's no way I'll be recovered enough to not bite her head off. If I can be recovered by the end of the week I have many more chores to do around the house (plus my house should be vacuumed once a week to try to keep the incessant cat hair under control) - like taking out the recycling that's all over, cleaning out the toilet that's covered in mold again, etc. I don't give a crap about most cleaning projects because it's just not feesible for me, but the moldy toilet is literally making me sick (my bottom is affected badly by sitting over that mold several times a day) and the cat hair is hell on my allergies.
What really sucks is EDS is progressive, so it's entirely possible that within a few years I'll be completely unable to do even the small amount of stuff I do now and I will live in absolute filth. Not a very appetizing situation, but the county doesn't seem to give a crap about helping me out. So I'll do what I can for now and when I can no longer do it, then so be it.
EDIT: The ride that was supposed to come get me didn't. They're supposed to call ahead of time to say if they're on time, a littl early, or a little late. They were supposed to be here at 10:30 so at 10:35 I called to find out what was going on. The driver was at minimum 30 minutes away, which would probably be closer to 45 minutes considering traffic and traffic lights. There's no way he could make it to my house and to my appointment safely on time! I called the schedulers to tell them what happened. I just had to risk it and drive myself, no matter how unfocused, exhausted, and pained I was. I left at 10:50 and was checking into my appointment at 11:21 - 9 minutes before my appointment - and by 11:40 the doctor was in the room. There was no traffic holding me up at all. If I had waited for him to arrive at 11:00-11:15 I would have missed my appointment completely! The good thing is that since I cancelled I wasn't getting picked up at 12:30 - there were some issues happening as I was trying to check out at 12:15, plus I had lots of new appointments to schedule, so I didn't leave until 1:00! The woman who checked me out felt bad I had been sitting there for so long (I was there longer than I was with the doctor) that she gave me a free parking pass as an apology. That saved me $5. If I had to catch the ride I would have been freaking out because she didn't even get to me until 12:45.
Now I'm home and laying down. My body is throbbing and I'm so crazy tired. I want to attempt a short nap, but I'm not sure if it'll happen. I only got about 3 hours of sleep last night, and after all the stress today, plus every aching, burning, and stabbing pain - AND now that I'm having 2 MRIs done on Friday and 1 seated MRI (checking for problems with blood flow to the brain while seated, which is totally different than laying when it comes to EDS) on Saturday - I definitely don't want to see my ARMHS worker tomorrow, so I cancelled.
Lastly, the neurologist had a student with him today, so this student had the chance to see a unique case. The appointment went better, and we are moving in a direction. I found out that I'm 1 of 3 people with EDS who is being seen in that dept, so hopefully we're all teaching them about how unique this condition makes us. The best way doctors for doctors to learn about the challenges of rare and incredibly unique conditions, and really understand them, is by seeing several similar patients who can help them see what they've never thought possible. If my struggles helps other patients in the future, then it makes me feel a little better about what I deal with.