Saturday, June 28, 2008

Don't you have anything but pain & sickness to write about?

Well yes I do, but I don't know that I will. I make this blog to write about my medical crap so that I have a place to do so. Trust me, no one wants to here this stuff everyday. The problem is I am stuck dealing with it everyday & so that I don't bore everyone around me I blog it.

On a happy note, the Genetics office called & I get to be seen there. I'm glad they'll see me. I was worried they wouldn't see me since I'm not already a patient of Mayo & it can be hard anymore to get in to Mayo if you've not been to one of their outlying clinics. The 1st appt they had was the beginning of Sept. My neuro told me it could be up to 6 months, so all in all not bad. I am going to call the assorted Drs I've seen & get copies of assorted medical files so I can bring that info with me.

I am thinking I may need to see someone regarding pain before then. My neuro said if I needed anything to make an appt, but I don't want to waste her time on something that my PCP should be able to handle. I tried taking some vicodin I had left over & it's really helped this past week. I'm only taking the tiniest of doses. I have 5/500 ones & I'm taking 1/4th of a pain 1-2x per day. So it's not like I'm super drug seeking here, I'd be looking for 30 pills to tide me over til Sept. I do worry however that my sucky PCP will not accept the word of my neuro & decide I don't have EDS & just send me for PT. I am not doing PT/OT until I have a firm dx of EDS so I can tell them what I can & can't do so I don't damage myself. I don't know, maybe I'll call on Monday & see if who I feel I should call.

Saturday, June 21, 2008

Work, Pain & Processing

I work 20 hours one week & 9 the next. I am having trouble doing that. It's hard for me to admit that I might need to look at stopping working for a while. My job requires me to be up at 4-4.30 am 3 or 4 days a week depending on my hours. That combined with the standing for the whole shift & the leaning over & lifting are too much for me.

My pain levels are crap, I am never without pain. I am cane shopping so I can hopefully stop stumbling & falling. I have to use the wheelchairs in the big stores now. I've had my parking thing for almost 4 years now because of falling. It's been years now that I have days where I can not walk down steps & getting up them is always agony. Plus it's been almost 20 years that I have had a horrible headache, everyday.

I need to take some time & process what's happening in my life. I've now finally reached a point where I can't keep fighting this crap & I need to figure out how to deal with it. I can't keep denying anything is wrong & pretend that I'm going to figure out something that will fix it all & I can go back to my old self. I need to figure out how to make friends with this new me.

Hopefully I can get some PT & some braces that can get me to a much higher level of functioning, but that's going to be a while before I can get the dx confirmed, then I'll have to wait til I get referred to the places to try & fix what we can.

Friday, June 20, 2008

Numb Pinkie & An At-Home Sleep Study

Well my left pinkie has been numb for days now. Well not truly numb, it's pins & needles like when you sit in the movie theater for a long, long time & your legs are all cattywhompus. It's been going on for days & nothing makes it go away, it's starting to drive me batty. If it's not better by Tuesday or Wednesday I'm gonna call the neuro & see what she suggests.

Last night I picked up my O2 monitor for my home sleep study. Was just a little dealie I wore on my wrist with a dealie that went on my finger to watch my O2 levels & heart rate. I really don't think I have apenea, but if we can rule that out maybe we can work on what is causing me to be so tired. On an aside it was neat to watch it change when I rolled over. My O2 (while I was awake) was 96-98 & my heartrate was 65-75. When I would roll over it would jump up to 95-or so & then when I got up from bed in the morning it hopped all the way up to 113. Wonder if that's related to my dizzy spells when I get up. It dropped right back down once I was standing for a moment, so I doubt it's anything.

Oh, I ordered some lightly tinted glasses, I am finding that computer glare & bright sun is bothering me more & more, but my sunglasses are too dark to use sometimes so these are 1/2 way between. Fingers crossed they work well. They should be here end of next week or soon there after.

Wednesday, June 18, 2008

No patience

I am still waiting for a call from the geneticist's office to get my appt. I hate waiting darn it! I also haven't heard a word on the sleep study people yet & that's been 6 weeks or so. I called them to see what's up. I should hear back today on that, so fingers crossed. (Hey if a hypermobile girl crosses her fingers does she get extra good luck?)

I think I need to call my neuro back & ask what thought she has for me in the mean time for me to deal with my pain issues. She said it could be 3-6 months before I am seen by the geneticist. I really don't think that I can "suck it up" that long. I wonder if her friend who's a rhummy would see me? I wonder if I see that doc if they suck they would try to cancel my geneticist deal. I wonder why I fret about these things.

I really wish I had my own wheelchair somedays. Weight bearing is becoming harder & harder.

Monday, June 16, 2008

Ouch, Ouch, Ouch

I want to rip my right leg off & fling it in to the streets. Any suggestions on how to do that?

I worked an 8hr day yesterday, which may not seem like a big deal to most everyone, but for me is almost an impossibility. I work in a coffee shop, so it's all day standing, plus the floor is often wet so a fair amount of slipping is standard. Add to that my gimped knees & ankles & you end up with one hurting pup. At least I have then next few days off so I can recover & then go back to my usual 3hr days.

A bit about me & my medical crap. I have OA in both knees & both hands, plus neuropathy in my hands, forearms, lower legs & feet. My neuro & I also think I have EDS. I am waiting for a call for an appt from the referral she put in for me to a geneticist to confirm & maybe even type the EDS. I also have Poland's Syndrome too, which may be stressing my joints even more.