My first day with crutches, sort of

Well today was my first day with crutches, but since it was also a school day I had to have a hand free to hold hand while crossing streets & driveways so I only had 1 crutch. I switched back & forth which leg I matched the crutch up with, I'm not sure which it works best with. If I am only using one it's gonna have to be on my right side, & yes for those of you keeping track that's my Poland's side. Since I have no chest muscles I did find it used back muscles in an odd feeling fashion, not a bad way, but definitely a well worked way. I also found when I matched it up with my left leg I was forced to use my right leg in a more correct way & since I had the crutch I didn't have to worry quiet so much about falling. So I think I am fond of these crutches.

I had been worried that everyone would be staring at me, but most people seemed to pay no mind. Since I live in the midwest where folks were taught far to many manors the world & his granny seemed to want to hold the door open for me. I really prefer to door open buttons since I don't have to worry about hurting a finger holding it while I go thru. Oddly I found more people talked to me, now I wonder if they all thought me strange since I wobbled & staggered a bit. I hope they think I was drunk or whatever, lol.

I got my gym membership today too, that was nice. Now I can go walk their track or do the pool while Toad is in school. :D

Got some things accomplished & Migraines & Headaches

Well 1st up I got a few things checked off my medical to do list. I did get in for the heart echo & thankfully things look good with that, just some MVP. My PT got tired of the hoops the insurance company was making us jump thru, so she told me they have a fund for people who don't have insurance or who have crappy insurance & need DMEs & that she would get me crutches from that fund. They've come in & I should be getting them this afternoon. Also had the casting done for my orthotics, should take 2 weeks for those to come in. We'll see how those go & if needed we'll adjust or make new ones. Hopefully they'll work fine. So the only things left are finger splints & knee braces. Plus I still have 1 of my migraine types totally uncontrolled to work on.

Which brings me to the second topic today, headaches. It seems I don't mention my other medical issues because EDS takes up so much of my mind. I was dx'ed with migraines without aura at 14 & was put on Midrin, didn't stop them, but did help me be able to fall asleep so I could ignore them & I thought that was a very good thing. When I was 18 it was decided that since I was having 4-10 of them a month I ought to be on a preventive, enter Inderal. That was an evil med, I had the most horrific dreams I have ever had & I had a nightmare disorder when I was young. So I stopped that ASAP & went back to my Midrin. When I was 19 or so my sister was put on this miracle drug, Imitrex. She gave me 2 of them to try & they would really reduce my migraines to next to nothing. Somewhere around 18 I discovered I did have an aura, it was a buzzing in my ears, it was my aura for about 2 or 3 years, but then while I would still get it, it no longer was an aura, but an irritating thing. When I was 24 or so I got my first visual aura, that was strange. I still get my aura migraines & Imitrex still kicks their butt. I get 1-4 a month of these since I figured out aspartame was a trigger, before that it was 4-8 a month cause I just about lived on Diet Coke. I miss Diet Coke a lot, haven't had it since early summer.

I also get aura only migraines, there is no headache just the aura & it will last for ages, then I get this odd pressure feeling in my head, but it doesn't hurt. No clue what that's all about, but I don't much care for it. Those a pretty rare, few a year.

I also get 2 other headaches, my everyday headache & my nasty assed common headache. The everyday one is a low level headache that I can, for the most part ignore. I've had it for a very long time. I know by the time I was 14 I lived on Advil, I was taking as many as I could afford. Some days I would take 20, others 100. I know it was there when I was 12, before that I don't think it was everyday, but I know I had nasty headaches all the way back to kindergarten & they were common, but I don't think they were everyday. It's at the back of my head near the base of the skull. Sometimes (read 2-8 times a month) they will switch, with no warning they get worse. It's as though someone is turning a dial up, they go from 2-4 on the pain scale to 7-9. My neuro says these are migraines also. I'm still not sure I believe her on that. I has a MRI & structurally things seem fine. I from time to time wonder about Chiari, but my brain butt (I can never remember the correct name for that bit that effects Chiari, sorry) is way high up on the laying down, so there is no way a Dr is going to order a sitting up one. I also wonder if it's not the tiny bones up at the top that are just under the skull dislocating. I have some ugly click & snap noises with all my neck & head movements. So right now I am just marking on the calendar each day I have a headache & each day I have a "migraine". I don't take anything for the daily headaches. I take Ultram for my EDS pain & I just take an extra one when I get the "migraines" & if it's there at bedtime still I take a Flexeril. Nothing makes either go away, the Ultram does nothing for the everday headaches & it only turns the "migraines" down a notch or two. The Flexeril does help both a small bit.

Anyhow there is my history of headaches.

Crutches

So getting crutches has turned in to a saga. The supply place said they couldn't get lightweight crutches, I called around to a few places couldn't get anywhere as they are the only DME place in town that does crutches. Called my PT to see what ideas she had, she gave me a place to call, but they don't take any insurance (it's one of those you pay us & get reimbursed dealies), but that wouldn't work cause my insurance doesn't reimburse. So called her back again & she called the DME place in town & once she talked to them sudenly they can get in the crutches I need, but they said I had to pay whatever my insurance doesn't cover, I asked if they had any idea what that would be & they didn't know. Since my policy says I don't have a co-pay on DMEs I called my insurance to figure this out. Had like 3-4 calls & finally found out that have to have my doc submit the rx 1st, then they either approve or deny it, if they approve it then I go to the supply place & get it filled. They couldn't tell me if I'd have to pay anything or not til after it's approved. So on the 10th we decided I needed crutches, on the 18th we fitted me a pair, as of today (25th) it's yet to be submitted to the insurance. I am thinking it's going to be a while before we get anywhere on this & since I need light weight ones I think it's going to be denied & I'll have to appeal.

In the mean time I've called my dad to ask for a loan & have sold a bunch of my hair stuff to pay for a pair. I am going to get a pair from my insurance, but I can't go the next 6 to 8 to 12 weeks without them, it's just not an option. So that's the condensed version of the crutch saga thus far, I've left out how I ended up crying from being so frustrated & the headache I ended up with. Hopefully my next post on this saga will be that my insurance decided they'd love to cover them & I'll have them ASAP, but somehow I doubt that.

Sorry I've Been So Quiet

I've been a bit out of sorts. I've been feeling a bit blah.

Let's see medical update, hmm can't recall where I left off. I went to the podiatrist, they left me waiting in the waiting room for 45min cause they didn't check me in correctly. Then they forgot to cast my feet so I have to go back on the 1st of Dec for that.

I have called 2x to set up my echo, but the main # doesn't know where to direct the call so they send me to x-ray, they don't do them at x-ray so they transfer me to the nurse line, no one answers the nurse line & I leave a message & don't get called back. So that's not done yet either.

P/T is going okish, she doesn't have anymore exercise to suggest for me so I am to keep working out on my own & I am going to apply for a Y membership & see if they will give me a "scholarship" for most all of it. The PT is going to be measuring me & whatnot next week for cuff crutches & a knee brace for my crappy knee. We'll wait on getting a brace for the other knee til after I get my orthotics to see if I still need one for that knee & to see if the one I get does work well.

Migraines are trying to destroy my soul. In the last 30 days I've had 4 separate migraines with one of them lasting 2 days. I am going to go see the neuro after the new year. I think there has got to be something else I can take, preferably with the neurontin since it does work so well on the other 2 types of migraines & on the neuropathy & as a nice tiny bit of mood stabilizer. Once I get to 600mg 3x per day I get my neuropathy flaring way up.

I think my OT sucks. He wants to make custom splints for my fingers. I'd rather he try Oval8s, he has size 4 as the smallest so they won't work for all my fingers. I don't get why he can't order smaller ones, I know they make kid ones. The custom splint he made for my middle finger on my right had doesn't really straighten my finger, but it does manage to hurt areas that it presses on that shouldn't be getting pressed one. I think I'm better off going to Mayo after the new year & seeing what they can do for my fingers, I'm not crazy gumby in my hands, but I need some help with them. I think the OT guy is just used to working with elderly arthritis people & I am way the hell out of his depth.