The socialization question

First, lets do a little bit of grammar.
so•cial•i•za•tion (s sh -l -z sh n)
n. The process of learning interpersonal and interactional skills that are in conformity with the values of one's society.
I think that can be learned at home & around town no problem. The question I think people are actually meaning to ask is about socializing. So that's what I'll address here.

I don't know about you, but when I went to school I heard a lot of "You're not here to socialize, you're here to learn" from teachers. That is true actually; school is for learning, not making friends. Add in to that the homework which means no time for playing with friends after school (& kids are getting homework in kindergarten). Then we have to take in to account the "bad kids", the kids you don't want your kids to play with or be bullied by. That is teaching anti-social behavior. Plus there's learning to worrying about if she's trendy enough. And of course gender norms, learning that girls don't play with trucks & that boys can't jump rope. Those last ones are skills I think she'll be fine without. But again, I don't think this is what people are asking either.

I think what people are asking is how will your child make friends & that is a question I can understand people having. Also how will she find people to date when she's older, of course I can see asking that as well. There are quite a few activities at our Y & at the library for younger school-aged kids. Plus there are groups for homeschooled kids, so instead of going to the science museum with 30 kids her age in school, she could go with 30 homeschooled kids of various school ages. Some homeschool activities are for a small age range, say 6-9, others are open to all homeschool kids regardless of age. She'll have tons of opportunities to interact with lots of kids is a wide range of ages, plus plenty of adults. I did take time to learn about what was out there for her to be able to have kid time, that was my biggest worry as well.

I've called

to apply for SSDI. Damn, that's a hard call to make. I gave them my basics & they will call me back to set up an appt as their system wasn't letting them make appointments.

In other news I am trying to teach myself knitting. It's going very slow since I have to stop & rest my hands so often. I am hoping that I can use knitting as a hand strengthening exercise.

Ow!

I think I screwed up my leg again. I did the steps too many times today & now I have this deep bone ache all thru my knee & lower leg. Son of a bitch it hurts. I don't gets this often so I've never come up with a plan to get rid of it. OW! It's that pain they used to try & tell me was growing pains. Today I am formally announcing I fucking hate EDS.

Ow, ow, ow! Ok, I'll stop now.

How am I?

Well funny you should ask, I have no clue. Because I am unable to work I am on assistance which means I have to jump thru hoops on their timetable rather than my own.

In the very back of my head I liked to keep the thought that everyone is wrong & I don't have EDS & by next summer I'll be able to take up jogging to loose this bit of weight I gained from the Neurontin. I can be the me that is a size 4 & wears platform heels everywhere. The me I was 4 years ago, sure I hurt & had times when I couldn't walk cause my legs wouldn't work, but hey those days were few & far between.

I went yesterday to the dr to talk about my prognosis since the assistance office sent me a letter saying I had to either get back to work or apply for SSDI. I asked if he thought I ought to apply, expecting him to say either he had no opinion or maybe. He said that normally he doesn't suggest it to people, but in my case it'd be a very good idea too & he'd help any way he could. I feel a bit gutted by that I guess. I'm only on my early 30s, I should be applying for social security. I guess this answers my question as to if I am disabled or not.

Parenting Stuff

So I've been thinking about some mom stuff. I am sad that I will never have any more kids. I wasn't planning on having more, so you wouldn't think it would bother me. It's just that it's not my choice, it's as though the choice was taken from me & that bothers me. The amount of decline after each child is significant, that combined with the fact I have EDS mean I just can't risk myself to have any more children. That's just sad to me. Dunno if that made any sense to anyone but me, lol.

Another thing is Toad's pre-school starts registration for the next year this coming week. They have 3 options; 2 are 2 days a week, either mornings or afternoons & 1 is 3 days a week, mornings. This is a change from this year where the kids could do 3 days a week afternoons. The 3 day a week they will have will be very very school-like. I had already been thinking a bit about school since the parent/teacher conference. During that the teacher was all about how Toad isn't too great with scissors or proper crayon grip, the stuff she kicked butt at was kinda glossed over with a quick "I'm sure you know she know --- wonderfully". The scissors are quite large for her hand & I know I sucked with scissors & writing for a long time. I don't see what there is to worry about with a 3.5 year old, but they do. They sent home a pair of scissors for her to practice with. I have a pair here already. Her problem with them is opening them, I am thinking about getting a loop pair to try & see if those are easier for her, they are for me. It's got me thinking about school vs home-school. Not to sound like an over protective freak, but I don't want her to have to be held to useless standards. I learned to cut just fine, just a bit later than most. I loathed gym & a lot of it hurt. From the EDS side I can see a lot of advantages of home school for Toad, plus she is a very high energy kid & that was the other concern they had for her. She needs to learn to not be excited so much. I am going to give homeschool a try this summer with home pre-school & see how it goes.

'Cause one can never have enough stress

I'm filing for disability this month. When one is born with a genetic disorder what is the 1st day of disability? When I had to stop working full time almost 3 years ago, but did work part time (never coming close to the $ amt that counts as gainful employment) what was my last day of employment? If filling this stuff out drives me to drink can I also add substance abuse to the list of impairments?

Frustrating

I have a lot of thoughts & emotions relating to being dx'ed with EDS, as I'm sure you all can guess, but I lack a person who I can talk to face to face about this. My roommate had to listen to all the crap & drama leading up to it & she's sick of it (can't blame her), my mother has freaky amounts of guilt & can't accept that I'm as disabled as I am so we can't talk about it. Which leaves me no one, well I guess I could pay a shrink, but what I want is a friend who has emotion vested in me to be able to talk with me, someone who knows me & cares about me to talk with.

I Know...

I'm still being quiet. I guess I'm feeling at bit in a rut & a bit blue. The days are shorter, I don't leave the house other than to take Toad to school 2 days a week or if we need something from the store. I really don't have any friends at all other than my roommate. I don't drive either. I have no family in the area or in this part of the country even. So I think all the isolation & bitter cold have me down.

Plus much as I love her, spending all of your time with a 3.5 year old is wearing. I don't ever get a day off. If I'm laying on the floor 'cause I have a migraine & she needs lunch, well I just have to do it. I wish I had a partner or sibling or parent in the area to call & say I need an afternoon off every once in a while.

So that's how I am.

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.

My day

Degenerative

It's a sucky word isn't it? Means things don't get better, means instead of working harder & getting better you get to work that hard & if you're lucky you get to stay the same. Now, it's that a joyful thought? Woo hoo, bust your ass for status quo! Plus, it's not even guaranteed, you could work that hard every day & still go downhill. Well with all that can't you see why I signed up?

You may have noticed some sarcasm in that last paragraph. I hate knowing that this might be as good as it gets, that barring something real odd happening I'm not going to get "better". I hate that next month my doc & I will be discussing Social Security.

I just wish I knew where I'd be in 6 months or a year. How far down will I go? It's a bit like falling in to a hole & you can't see the bottm.

I wrote this the other day & for some reason didn't put it up, since I can't remember, I'm putting it up.

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.

Weekend Weirdness

1.) When was your last visit to an emergency room? What happened?
Uh well that depends. Last time I went to the ER they sent me to urgent care since I was there for a migraine. I got to meet the ultimate asshole doc who thought I was just looking for pain meds. I found out from some nurses later that no one likes him & he treats everyone like that. The last time I was in the ER is for when my roommate had a router try to gnaw a few fingers off. It was so gross. I think I still have pics from it somewhere, but I'll spare you.

2.) Who do you look more like: Mom, dad or another relative?
Carbon copy of my mother. I'm a bit taller, wear glasses & my hair is a shade or two lighter, but other than that a carbon copy.

3.) What sounds annoy you?
People chewing can make me feel really rageful. A few of my sweet child's toys drive me up a wall.

4.) What are three movies could you(or have you) watch(ed) over and over and still love?
The Others
Nightmare Before Christmas
Night Mother

5.) Do you ever wish you were someone else?
Yeah. It's a game I play when I feel like total crap. It's part of my way that I distance myself from my pain. I also play what would I do if I won a million dollars. I also play who would I be if I was born 100% medically normal. It passes the time better than sreaming & crying would.

6.) What do you think of when you think of Paris?
Butter & cream. Really that's what pops in my head first.

7.) What'​ s the last sport​ing event​ you watch​ed?​
Uuuuuuhhhhhhhhhhhhhhhhhhh............................

8.) What do you think about sexual Role Playing?
Nice for rare variety, but not for everyday.

Potty Training & Discipline

No this isn't a post about those happening together, those are 2 different topics.

Potty Training is doing awesome, she'll even go by herself sometimes during the day as long as she knows I'm waiting at the bottom of the steps. She won't go by herself in the evening, but I think that's partly because she can't reach the light switch. I am going to get one of those dealie-bobs that makes it so she can. Other than nap & overnight she doesn't wear a diaper at all. she still won't poo in the potty & as much I can't wait for that day I won't rush her yet.

As for discipline I think as a parent we have an idea of how we want to discipline, but you won't know for sure til you know the temperament of your child. Right now we are tying the star system. I've got a dry erase board & when she does good stuff she gets a star when she does naughty stuff she looses one. If she makes her goal for the day she gets a treat at the end of the day. She also has one chore on there too that she needs to do (no stars for doing it). It's easy stuff like picking up a room of all her toys. The rewards for getting her goal of stars are little things like watching some tv before bed or painting or stuff like 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.

Weekend Weirdness

1. If you were in a situation where it was either starve to death or resort to cannibalism, would you resort to cannibalism to stay alive or let yourself starve?

Who am I there with & do I have to kill them first? I'd probably starve, but if I was there with Dalmer I'd be more willing to give it a try.

2. Do you know all of the words to the National Anthem and The Pledge of Allegiance?

If I'm singing it I can do 90-95% of the anthem, the pledge I've got down pat.

3. Do you consider yourself a leader or a follower?

Leader, 100%

4. What is your most favorite holiday? Why?

It used to be Halloween, but as I get older Xmas is becoming tied with it.

5. In what ways, if any, are you superstitious?

I don't like to walk under ladders, but that's more of a fear it would fall on me or someone up the ladder would drop something on me.

6. If you had to pick a creature from the Mythical Creatures Guide to be your pet, which would you choose and why?

Father Time, how sweet would it be to talk with him?

What was scampering about in my mind after reading a few other blogs

There are the are the stable disabled, the up & down disabled & the degenerative disabled & some mixes of those. I am the degenerative disabled with a splash of up & down disabled for flavor.

I can only speak for myself & I am a total n00b in the disabled world I grant, but I think it's harder to get the rest of the world to understand the fact the up & down people are disabled. Some days I can't get my legs to bear weight, but most days I can but it's painful. I often don't know if I'm going to be able to do something as simple as snap my fingers until I try to do it which I can either not do it or I can do it & risk a dislocation. I am averaging 1 migraine a week right now & that's a huge improvement over how I was doing this summer. I am disabled by a few different things, but once in a while I get to go visit the land of AB for an hour or so, but I never know when those times will be so I can't even take advantage of them. Those trips suck though, it's hard for me to accept that I am disabled because of them & if I have trouble getting it thru my thick head how can I expect others to figure it out.

When you have an up & down condition you often put off going to the doctor which means you spend a while listening to others tell you to suck it up, you spend a while telling yourself that too. When you have a degenerative condition you start out pretty normal then slowly go down, since it's often a slow trip down you often don't even realize you've gone down hill until things are getting pretty crappy.

I don't know if there is a point really to this, but I read Drake's post & then Yanub's & they got my mind rolling & this is what was scampering about in there.

Because Rules Don't Apply To Me I Can Pretend It's Wednesday

I've decided to do a meme on the weekend, but as no one I know memes on a regular basis I went to the Daily Meme to peruse the selection. The one I liked? Wednesday Weirdness, but I'll be doing it on a Sat or Sun. Yeah, that's the kind of girl I am, the one who does a Wed meme on Sat, yehaw! I also thought a meme would be neat because it would show a more rounded view of who I am, I'm not just a internet gimp-star.

Wednesday Weirdness #27

1.) As an adult, do you do anything for Halloween or is it jut another day?
I used to every year. I think the last year I trick-or-treated for myself was when I was 18. As an adult I went to tons of Halloween parties, heck I was up for celebrating Halloween year round. The last 3-4 years I haven't done too much, Toad was tiny & had some nasty medical issues, so we didn't really do anything. We trick-or-treated at a few neighbors houses, but that was it. This year was the first year Toad really "got" Halloween & I think from here on out we shall be back in the swing of truly celebrating again.

2.) Do you ever dress up for Halloween? What will be your costume this year?
Yep, I have dressed up for every Halloween save 2-3 since I was born. This year I wore my usually Halloween gown. I'll have to get a pic of it. I wear it when I haven't had a chance to show for the year, but need a costume, then I just need to accessorize quick & I'm set.

3.) Have you started Christmas shopping yet? When do you usually begin?
Well after the holidays I usually buy paper, bows & that stuff. It gets expensive & I hate paying a ton for stuff that's just going to get tossed. I also am a bag saver, I save all the bags & use them again. So wrapping is all set.

My roommate's sister is just about done with for shopping. My mom's gift is 1/2 made, so that should be done soon. I will be doing the Black Friday thing & that is usually a chuck of my shopping. I know it seems crazy to go out, but I live in a smallish town so the crowds are light, if I can get a scooter I'll be set.

4.) Do you look people in the eye when talking? Does it bother you when people don't make eye contact during conversation?
Yes & yes.

5.) What excuse do you usually use when you want to take a day off work for no real reason?
When I worked I took so many days off for real reasons I almost never faked a day. I think once in a rare while I faked a migraine, but it wasn't common.

6.) How often, on average, do you find yourself thinking about sex per day?
Um not often anymore. I've been single for a few years.

7.) What company makes your favorite brand of shoes? What makes them your favorite?
Hmm, I don't know if I have an answer for that

8.) Do you ever save alcohol bottles once they are empty?
Do, stopped doing that when I was 20 or so.

9.) Do you enjoy musicals?
Some of them. If you promise not to tell anyone I'll let you know I love The Sound of Music & 7 Brides for 7 Brothers.

Water PT Issues, Plus Some Random Bitching About Being Unwell

Well I had to cancel my water PT appt & make it for the 10th. The swimsuit I ordered may or may not be here in time & since the appt is on Monday I needed to cancel. It was much harder than I thought it would be to find a swimsuit this time of year. I searched the net & being a very full busted gal I can't wear a thin strapped top or I'll look like a stripper. Plenty of places had great suits if I wanted to spend $80-150, other places had awesome deals if I was a size 2 or a 24, some places had wicked suits if I didn't mind wearing a 2 piece, but the EDS has given me such horrible striae that no one should have to see that I figure I should skip those. I did find a nice suit that should work great, the color was even in my second choice black (I'd have loved a red one, that was the 1st choice).

On a side tangent I am tired of being unwell, tired of all the appts, tired of feeling like crap, tired of not being able to do whatever I want. Hell, I'm even tired of not being able to drink Diet Coke anymore (migraine trigger). I'm tired of being flat broke. I'm tired of being a size 14 rather than the size 4 I ought to be. I'm tired of the pain, I don't want to be in pain all the damn time. I'm just plain tired.

Disability & Money

Getting disabled isn't for those with limited income. As a single mom my money needs to go to my daughter not me, but yet I wonder if it won't end up punishing her later on as I become more disabled due to putting myself second.

Poland's Syndrome Stuff

It seems that the main search that brings people here is Poland's Syndrome, but yet I don't end up posting as much on that as I do the EDS. I think at dx & during the pre-teen/teen years people want to know they aren't alone with PS & want info. So I will try to make a effort to help y'all out.

I was dx'ed at birth, my mom is still trying to decide if it's her fault or not, honestly as an adult I don't think it's anyone's fault. I do not blame anyone for my PS, it's just something that is. As a baby/toddler/young kid I really didn't feel or act different than any other child except for a few things. I obviously didn't crawl, between the PS & the EDS I think that's a given. My handwriting was the worst in the class, I have PS on the right & am a righty. So for parents don't blame yourself, it's wasted energy & there is no reason your young child can't so anything anybody else is doing.

As for teens I got nothing for the guys, just for the girls as far as how to blend in. For you girls go buy a chicken cutlet, ok not a real one but one of those fake silicone boobs you can stuff in your bra. (They really do remind me of a piece of uncooked chicken.) You can pick up a cheap pair on Amazon or eBay, you don't need the fancy ones, just the $20-ish ones will work fine. Your boob size will change a few times so no sense in spending a ton just to toss them out in a year. Also if you're wearing an opaque bra you don't even need them to match your skin. These things last for about 2-3 years. Oh, buy the set, not the singles, that way you always have a back-up boob incase you need it. When/if you buy a new set keep the old ones, you can stack the older-smaller one on the new larger one if you grow again & that way don't have to rush to get a new set right away.

As for current stuff we are trying to help out one of my fingers. The middle finger on my right hand has curved a lot. It was a bit wonky from birth, but it's gotten really wonky as I've aged. I'm not sure how much is due to PS & how much is due to EDS or if it's just the freaky mix of having both. I got a splint to sleep in to help out.

PT, OT & Gym

Things are going well with the PT, we start pool PT next week. I do feel she's a bit like she's at a loss as to what to do with me. I asked her about helping me to learn to get up off the floor with out looking like a freak or screaming in agony. She asked me to show her how I was currently getting up off the floor, her jaw literally dropped. Guess that means I really was looking like a freak. We went thru a few suggestions & she's going to think more on it. It's almost not for for an EDS'er to go to PT, they rely on stretch & increasing range of motion. I did have her show me the ROM for a few joints, wow I was shocked. I am trying to stay with in the norm as best I can.

I'm not sure on the OT guy, I think I am beyond his area. He made a custom split for my super bend right middle finger to wear at night. He doesn't have Oval8s smaller than a 4 so those are out, he wants to custom make some thing up for me, but I'm kinda eh on that. He did slip me a jar opener which was sweet. He sent me home with a neoprene thumb splinty thing to wear all the time. I'm not used to it so I am just wearing it for 30-40 minutes, then off for an hr or two. I just feel he kinda didn't know what to do with me.

The OT, PT & I all talked about walking aides. The OT left after a few seconds so it was just me & the PT. we talked about crutches (platform & forearm) & walkers. While I will grant that my vanity isn't all that hot on a walker I don't think one would work for me. With the arms being different lengths I think that's gonna be a serious hindrance. The forearm look the least tacky to me, but I worry about my elbows, the platform just feel strange, not a natural movement sort of thing. Any other EDS folk reading this please comment what you use, walker, crutch, chair, litter with servants, whatever. She & I couldn't figure out what would work best for me & I told her I'd see that others are using & we talk again.

Since the water PT is at the gym I had to find out how to get to the dressing room & pool. I got the cute gym guy to give me the tour. Of course I was running late so I had no make-up on, oh well. He seems to be a nice person to chatter with. After he showed me the dressing room & pool I asked if he had time for a full tour & he did. I asked if they did badminton, I have never played, but if EFM can then maybe I ought to work on getting over my phobia & get to trying it. (I'd have to learn to drive to be able to get the chair there & that would be the phobia part.) They cute gym guy said only could I do wheelchair badminton, but I could do wheelchair pickleball (it's a hybrid of tennis & badminton played with like a ping-pong paddle). After the tour he gave me a couple of free passes so I may try the gym out a few times if the PT says that's ok. Nothing big just walking the track or trying to swim (I kinda don't know exactly how to swim, but I think I could fake it a bit to get some exercise).

P/T Appt

Went pretty well. She thought my idea of switching the one exercise was great & it works the muscle perfectly, so much for worrying I'd get a talking too. She tried to use one of the Thera-Band things & I tried it for 2 flexes & declared it a no-no for me. I know they are a no-no for most EDS'ers, but I thought I'd give it a shot.

We used the Nu-Step for a bit, but we had to stop because I swear I felt my right kneecap lift up a bit, kinda creepy. The PT tried to brace my kneecap & have it track right, but as soon as she let go it did it again. So we called that machine a no-no for now, we may come back to it later.




Next week is land PT again, then the week after is water PT, this means I have to buy a swimsuit. Aaahhhhhhhhh! Yeah, I gotta get a swimsuit, this should be just like hell.

A bit of this & a bit of that

I've had 2 nasty common migraines (no aura) in the past 5 days. Thankfully the 1st went away with a good nights sleep courtesy of some meds & muscle relaxers. The 2nd one hit at 3.30am so I couldn't take much for meds (otherwise I might not wake up when the alarm goes off & I won't take much during the day since I don't like to be too gorky), I just rode that one out. It was gone by bedtime.

My right hip has been a bother lately. It's like it's a 1/10 of a nanometer off from where it should be, but it pulls or presses on a nerve so it hurts a bitch. I can't seem to get it to be where it ought to be so I'm just stuck with it like this. Ah, the joys of EDS.

I had PT last week & I go again today. I think I broke the cardinal rule of PT. I changed the exercises they gave me. I was supposed to lay on my back with a my legs out flat & a towel under my knee, the using the top of my thigh press down. I've found if I lay on my tummy I don't hyperextend at all, even with the towel I would a bit. So I might get in trouble for not doing it right. I don't know how often I was supposed to do the exercises, I did most of them everyday. I skipped the headache days, cause to be honest I barely did a thing on those days.

I stopped by my old job & talked to one of the girls there about having her sister come over 1-2x per week for an hour to help me out. I am hoping she'll be up for it. I just need some help with getting laundry down to the basement to wash & getting it back up to the 2nd floor to put away. Plus the trouble of folding it all. I need some help with vacuuming & a few other things. No backbreaking stuff, no cleaning bathrooms, no icky cleaning. I was thinking 1/2 hr of that, then 1/2 an hr of playing with Toad. Just going outside & running around the yard or walking to the park. She needs to get outside more & I can't handle her outside well. She's 17 & adores little kids & thinks I'm pretty cool, so I thinking she would be up for helping me out.

My skin is even better & it's only been a little more than 2 weeks. I am starting to really think this might be the fix I needed. Some days I've skipped the morning cleaning, if I'm not going anywhere or anything I figure there is no reason to clean my face. I am thinking I'll put up a pic Friday since that will be 2 weeks.

Potty training is still doing awesome here. She will ask for a diaper if she has to poop. If we are just running a few errands & won't be out over an hr she doesn't wear a diaper. She's got wiping down great too.

Well I think that covers the highlights of what's going on here for the most part.

Headaches

I got one of my other migraines yesterday & it knocked me for a loop. I don't like to take much for pain meds during the day since I've got Toad here, so I just suffered thru it. At bedtime I decided to try just the muscle relaxer with ultram instead of with vicodin that I an supposed to take. (I take the ultram at bed evernight anyhow.) It worked well, I was able to sleep & normally I'd wake up with a milder migraine or just a regular, but icky, headache. This morning I woke up with a headache just a touch worse that my everyday one. Plus, unlike when I take the vicodin I don't feel oogy- slushy like I usually feel, I feel a bit tired (I did wake up a few times last night). So I think this is going to be what I do for these.

Drunk?

I was reading a book about someone with MS & after he got a cane he was much more balanced when he walked. People then told him they had assumed he was drunk by how he was walking. Now I wonder if people think I'm drunk by how I walk. I sway, I stumble over nothing, I have trouble getting from point A to point B with out these issues. Do strangers think I'm drunk or something? I stumble, trip over the ground & fall from time to time. Ugh, just one more thing to worry about.

P/T with Ehlers-Danlos & Poland's Syndrome

Yesterday was my 1st PT appt & my therapist (here forth known as K) was pretty nice, plus pretty good I think. She did have a student with, who I really just didn't care for the personality of. I asked right off if she was familiar with EDS & with PS, she said she knew about the hypermobility issues with EDS & asked if I had an vascular issues. As for the PS she asked if I had any webbing & knew it mostly has a hand issue, I told her about the missing muscles as well. I told her I was up for trying anything she wanted to try as long as she understood that if I ask to stop she respect that & understood that resistance stuff wasn't going to be an option. She said of course, you could end up with a dislocation or worse otherwise.

She asked me to move each body part thru it's normal range of motion & as I would move she kept saying "Ok, stop, stop that's far enough." I kind of chuckled after 2-3 of those & said I was sorry, but I had no clue what normal was. Then she placed her hands on a few joints while I moved them & she could feel & hear the crepitus & the student across the room could hear it. That was a bit embarrassing. On my other knee she could feel it slide out & back in to joint & I didn't even realize it had done it. That was my right knee, aka the world famous dump me on the ground all the time knee, so I guess I shouldn't be shocked. She then had me push against her to check over all strength & had me stand on each leg in turn & stand with my eyes closed. My balance isn't 100%, but it's not to bad.

I got to wander up & down the hall, I swing my upper body too much, but I knew that. She hated my hurry walk, (sometimes you have to haul ass when you've got a 3 yr old) which consists of locking my right knee turning my hip fully sideways & locking it then walking fast. I talked to her about the problems with my neck & with how I can't turn to the sides well, that my head doesn't turn much. Well I found out that it turns just fine, I guess it's a totally normal rage of motion, it just doesn't hypermobile anymore.

We did a few exercises that barely counted as moving & I am to practice them at home. She is putting in for me to go over to OT for the assorted "toys" & because PT doesn't do hands, that's OT. She also loves the idea of adding in water PT & is fine with doing that while Toad is in school, which obviously is kick butt for me. :D We will do more land PT for a bit first, then add that. We are doing 1x per week right now.

Weight Gain & My Skin

Neurontin has a known side effect of weight gain, add to that the inactivity of my pain & it should come as no surprise that I weigh more now than I did a year ago. 5 years ago I weighed 115, then I got pregnant & with that quit smoking. When my daughter was born 3.5 years ago I weighed 145. Now I weigh between 165-170, I am needless to say not to pleased with this. Going from a 4 to a 14 takes a bit of a toll on the self esteem, but I always took pride in the fact that my hair & skin always looked great. A few months after I went on the Neurontin my skin got bad, like 15 year old boy on his worst day bad. I never wore concealer or foundation & now I had to start & it didn't really hide the fact my skin looked like shit. I tried a million things on my face, but nothing really worked so I broke & bought Proactiv a bit over a week ago. It got here on Friday & my skin looks a bit better already. I know it might just be a fluke that my skin looks a tough better so I am holding out my final opinion on it for a while yet. In 3 months if my skin is clear & staying clear I'll vote it works, but I am just glad that it might. I am glad I didn't have to use concealer today, I'm glad it doesn't looks so red & painful today. Oh & if it does work I will post a pic to show, but not yet. I can handle being a size 14, but only if I can be a good looking 14, if I have to carry 50lbs extra I better at least look damn good doing it.

It just gets old

Like many towns during the fall we have an art fair. I went to mine today, it's small just 2 blocks long & only 4 blocks from my house. My hip wobbled a bunch & my knee when all the way out & then kindly went right back in again. I am tired of this, I just want to be able to walk somewhere & not have things pop out of place, to not have to increase my pain meds. I want to be able to buy my giant caramel-pecan-chocolate covered apple & a nice ceramic mug for tea & a glass bead home with out my shoulder being in agony.



I guess I'm still getting thru my stages of adjustment. Blah, at least my mug is pretty.

Just one of those days

So today was supposed to be PT, but my roommate, who was supposed to watch Toad, scheduled a meeting right in the middle of when the appt would have been. And didn't tell me til last night. So I had to reschedule. I double & triple check what her schedule is for Monday & Tuesday, she says they are wide open. I make the appt for 1pm on Monday, she has a meeting. I debate flinging myself in front of a train, but decide that's more work than calling back & rescheduling the rescheduled appt. I got it moved to 2.30, which is after her appt & the last appt of the day. I also made my appt for podiatry for the 30th. That is a short appt, so I'm guessing it's just a meet, greet, check your feet appt, nothing major being done. I just wanna be done with all these appts, but I know I won't be. The PT is gonna wanna see me a few times per week I'm sure, podiatry will need to see me 1-2 more times. I have no child care other than the 4 hrs she's at school a week (that's 4 hrs for the whole week) or my roommate so it's hard to schedule appts.

My Spine

Something, or rather as I suspect a few somethings, are out of place in my neck. I've got 1 do go back in place, but I have to admit reducing dislocations in my spine kinda creeps me out. It's my spine! You should be moving bits of bone around when they are next to your spinal column, what if you broke something in there? Eek, it just seems wrong, but on the plus side it feel better.

Tomorrow I got for my first PT appt, hopefully I get someone who is willing to learn about EDS. I'm the sort of person who always assumes the worst case & that way if it's crappy I'm not disappointed & if it goes well I get to be pleasantly surprised.

I wonder if you can get arthritis of the scapula. Almost any movement of my right shoulder causes some wicked discomfort & tons of clicking there. Since it's not a joint I'm wagering you can't, but I'd love to know what that clicking is. I hope it's not & that can get fixed up somehow. It's my left arm (aka the good arm).

I have decided once I run out I am no longer going to take my potassium supplement. It gags be so bad. Plus I will be switching my multi-vit to something a little stronger. I currently take a children's chewable because it doesn't have iron, iron kills my tummy & binds me up so seriously it's obscene. My mom suggested checking a few brands that might not have the iron in, plus I am going to pick up some more D. I think I'm going to do 400 3x per day.

I also have to decide what I'm going to do about the Neurontin. I was at 900-600-900 for dosing. I dropped to 600-600-600 & my neuropathy is back & it's bad, but I don't feel so brain fuzzed. I've been putting up with the neuropathy to get a break from the fuzzy, but I think I'm going to have to up the dose again. I hate the fuzz, but I can't function with the neuropathy going on, so it's just as debilitating as the fuzz.

I have rickets!

Well ok technically rickets is only in children, it's really just a deficiency. I got an email telling me my levels were low (around 25) & telling me to take 400IU 2x per day. That's what I already take. I emailed back telling him that's what I have been taking for a year. He said to make sure to take it at 2 different times per day. I was taking it at lunch & bedtime, but I'll switch to breakfast & bedtime & see if that helps. Even though I super, super pale skin & pretty much burst in to flame in direct sunlight I don't wear sunblock unless I am going to be spending a while out doors. I am going to try to make a effort to sit outside in a tanktop (til it becomes way to cold to do it) for a few minutes each day. Anybody got any good vit D boosting ideas that don't involve eating fish?

Wolves

Twice this weekend I heard the same line from 2 different people. A line about crying wolf. Needless to say, I am displeased.

I was talking about my cold to my mom & she said it was hard to take me seriously or even to listen about it since I'm always talking about being unwell. Since something is always wrong with me. It's like the boy who cried wolf. I pointed out that unlike the boy I wasn't just bored, I really an unwell. She said, yeah I know that, but you know what I mean. I dropped it, but in all honesty, no I don't know what you mean.

Then last night my roommate was complaining about catching the cold Toad & I have & how it was so horrible. I told her maybe she should follow the advice she gave me to just suck it up. She tossed out the wolf line. I told her than unlike the boy I really am constantly being attacked by wolves. I am a wolf magnet. She said you can't really feel like crap all the time, no one can. Uh, with all due respect she's 100% wrong, I do feel like crap all the time.

Colds

Ya know, it's funny, I don't get colds often & when I do they are gone pretty quick. Toad brought a cold home from school last week & it's been kicking my ass. I guess when you're already tired all the time & achy all over adding a cold to the mix really just makes you feel like a blob. I went to bed last night at 8.30. I can't take cold meds cause they cause my heart to race so fast it feels like it will explode, so I'm just stuck suffering thru it.

On a good note the drama with getting my pain pills cleared up & I finally have them. I don't think I mentioned that, but I'm not sure, so I'm sorry if I'm repeating a bunch. My doc rx'ed some extended release pain pills, he said some insurances won't cover them. I go to fill it & the pharm says that my insurance is canceled. I got some paperwork in a few days late & so my insurance was canceled on 30/9, but it should have been reinstated on 1/10. My insurance was, but the rx part wasn't for some reason. So I call, the chick there says it should be good, but she's gotta call the other part & get them to switch it. So they didn't get it fixed til the next day. I couldn't get to the pharm til just before 5, they re-run the rx & the med isn't covered. At this point I consider banging my head on the wall. The awesome chick at the pharm calls over to get the rx changed to another form of the drug. My doc isn't in, so she get transferred to the talk to a random doc line. They don't answer & she gets transferred to someone to leave a message, she tells them it's 5 to 5 & doesn't want to leave a message, she wants to talk to a doc since this is a Friday. The person on the other line says they will have the doc call back, that they will give him the message personally. I wait a bit & then tell the pharm I am going home, to call me when they figure out/hear back. She calls me later & tells me the random doc said if I was in pain, I should just go to the E/R & they could decide if I needed pain meds. (BTW to that doc, Thanks asshole. I think I know who that doc is too, there is one doc there who doesn't believe in giving pain meds.) I am now lining my head up with the wall to start banging, but the pharm chick says she decided to just call the E/R & see if the doc there would help. It was a doc I'd seen before when I hurt my foot. He was fine with writing for me thankfully. I told her it was too late for me to get them that day but I would pick them up the next day (Sat) & thanked her a lot. So tomorrow I'll call my doc & check that this matches up with what he was going for, which I'd think it would.

Hm, I guess this post was less about my cold & more about the pain meds. Well one more thing on the cold front, this is the first "big" cold Toad has had & while there is more whining than one person should have to listen to, she's been dealing very well with it. There is no pre-school tomorrow, which is kinda good cause she would have to miss it. I just hope she's ok by Wed for school, I'd feel bad if she missed a whole week. My roomie finally got the cold yesterday & she's out of sick time at work so this week is gonna be a hell week for her.

Thoughts from my brain

I am tired of being stuck within the same walls everyday. I'm tired of never going anywhere, never doing anything. I don't drive, with the EDS & with having a pre-schooler it means I don't go anywhere. I have never learned to drive & just sitting behind the wheel gives me panic attacks. I got my permit this week, so now I just have to figure out how to get over the panic & fear & actually learn.

I got back my B12 results, they are more than fine 1200-something. I think I'll switch from the 1000mg a day to alternating 1000mg one day & 500mg the day after & go back & forth. It should keep my levels up just fine then. No word on the D yet.

I guess I'm borrowing trouble, but I am a bit worried about the PT & if they will be knowledgeable or at least open minded or if they will think they know best & offer lots of resistance & stretching. The Poland's will effect what I can do to, ugh.

My insurance was canceled by mistake on the 30th of Sept, but was to restart on the 1st of Oct, so I shouldn't have run in to any issues. Well it seems the pharmacy part of my insurance didn't get the memo & there for the new meds the doc rx'ed for pain weren't covered. So now today it's all fixed so they should be covered, I'll be calling the pharm to see if the rx will go thru now.

& the GP says

Remember the post I wrote about being disabled & wondering if I was? Well I now have the answer, I am.

I went to see my GP* yesterday to discuss the results of the trip to Mayo & to decide where we are going. The appt lasted 45min & we discussed tons. He did ask how I was feeling & how I'm handling this. I told him I've had a few down days, but right now I think I'm overall just fine & coping well. I was also referred out to podiatry for orthotics, cardiology for an echo & PT/OT for whatever they can do. I did have him check & see if my B12 was up to a nice happy level (it was low about a year ago & I've been on supplements since) & check my vit D, cause that's often low in EDS folks. He wants me to keep an appt down at Mayo for OT since they would have access to more gadgets & thingie-bobs to help me do stuff. He was certain that the one here wouldn't have as much as I would need. After a month I'll go see him again & see what's up with what from the appts.

We talked a lot about my ability to do things & my pain levels & how often I'm popping stuff out. I made the comment that while we couldn't fix me, I wanted to make sure we slowed down the damage as much as we could. I also talked about what I could do 5 years ago before I got pregnant the last time. I told him I thought I was on a razors edge before I got pregnant & that the relaxin was all I needed to push me over the edge. He did ask if I was done having children & I told him yes I was. Based on his body language while we talked he doesn't think I'm going to be much better than I am now, but he does think we can slow things down. I can tell he read the stuff I gave him last time & looked up more from how our conversation went. I gave him some more info & he said he'd read it, which I'm sure he will. I told him I think I have a structural issue & that's what my everyday headache is & he said it totally could be. He said on his own that just because a laying down MRI is fine doesn't mean there isn't a structural issue, even on normal people there are changes between laying down & standing up & on me there definitely would be.

Got a call from PT/OT for an appt to see what they can do for assistive odds & ends. She asked what sort of things I would be needing (cause I'm 99.99% sure she had no clue what EDS is) & I gave her a 1-2 line run down on my issues. She asked if I had a wheelchair already, I fibbed & said no since the one I have is a bulky travel chair that isn't quite the right size. I don't think my insurance would cover one since I wouldn't be full time, but hey never hurts to try. I go next week for that & based on what they have/do I'll figure out how soon I want/need to go to Mayo. They did offer an appt for tomorrow, but I can't get to that. She was a bit worried that an appt at the end of next week was a long way off, but I told her this is my everyday life. I have some coping skills/tricks & they would bide me thru for another week. I told her I have Poland's Syndrome too. I thought it was kinda nice that a medical place cared if I was gonna be ok.

*Ok, he's really an internist, but that's long to type & I hate the term PCP, so my doc gets a small demotion when I type about him. He's pretty laid back so I think he'd understand.

Things running thru my brain

Oh let’s see, how do I begin this. Around the beginning of this year I first heard of Ehlers-Danlos and began to consider a if I might have it. It seemed so farfetched to me, I had the pain I had problems but nothing that severe I thought. So I read more of a research more and asked questions, trying to learn more about this to prove to myself that I couldn’t have it and yet with each question I asked and with each thing I learned it seemed more and more likely that I did. When it finally became fairly obvious that that was what was wrong with me I had asked my neurologist if she concurred. She did. Then I went to Mayo was diagnosed. Thus began the attempt to transition my mindset from that of a person who was trying to figure out and fix what was wrong to one who now knew what was wrong and that it could be easily fixed.

It’s a strange thing trying to figure out what the normal is when what you thought was normal has nothing to do with what is normal. When I was young I thought it was really neat to be able to be so flexible to do the little tricks I could do with my hands. I always had pains but I thought everyone did, growing pains, headaches just plain aches. What kid doesn’t have those things? It turns out most kids don’t have them every day, I did. My sister and my mother had these things too, so in our house it really was normal. By the time I was in my teens I never even bother to mention these things. I’m no longer sought medical attention when I hurt myself by simply walking or just going about my day. I realized there was no point; an ace bandage and maybe a pain killer were all they had to offer. In my early twenties I learned that my tricks were good for a free drink. By my mid-twenties my pain went from I really could ignore, that I could push to the back of my mind if I needed, to something that often screamed, demanded my attention. This began the game of trying to find a doctor who would listen and value what I had to say. Finally I got to the doctors I have now and to the diagnosis I now have.

The hardest part for me is this transition, when do I get to the next stage, how do I move through this and except, because I don’t want to. I’m still me, just a version that is carrying an extra 20 pounds from meds and inability to be as active as I ought to be. I don’t want to sit here and accept that this is that, this is as good as it’s going to be, that I couldn’t get back to the level of activity and ability that I have five years ago. I don’t want to accept that I own a wheelchair, that the only way I can put all these feelings down is to use speech recognition software. (By the way if anything reads really strange chalk it up to the speech recognition crap rather than to me suddenly having horrific neurological conditions.)

Well I guess that’s enough of my ramblings for today.

Quotes

Reality is merely an illusion, albeit a very persistent one.
-Albert Einstein
There are many ways to be free. One of them is to transcend reality by imagination, as I try to do.
-Anais Nin

Just because it's beautiful

Pins & Needles Hand

So needless to say with my shoulder & elbow having been out my hand is all pins & needles. I just feel like whining, but I'll spare you all. The elbow is back where it belongs & the shoulder is just about right, but just a hair off or I pissed off something in there & that's what's hurting, either way it still hurts.

On to other topics, I am off the Pamelor, couldn't take the side effects anymore. The biggest issue one being my heart going flutter-flutter-BOOM, that feeling wigged me out a bit. The neuro wasn't in the office when I called to say I was going to stop taking it. When her asst called me back she said the neuro didn't have my chart to consult, but if I wanted to try Topamax she'd call it in for me, unless I had kidney stones, which she thought I might. I have had at least a dozen that have passed & have at least 1 in my left kidney right now, so I passed on taking that. So I'll stay on my Neurontin for now. I have been reducing the dose a bit even though I I feel my neuropathy more. I am sick of feeling so tired & the neuropathy I have isn't going to kill me. I need a break from the drug right now & I'm not going to stop taking it, but a reduced dose for a few weeks should be ok.

I go see my GP next week & talk over who/where he'll want to refer me out to & what I want to be referred out to. This is also the appt where I decide if he is a doc I will be keeping. He did blow off a lot of issues I was having thinking they would just go away or something & I was thinking of firing him, but he had been getting a bit better & does seem eager to learn. A doc who can admit he might not know everything under the sun & is willing to not only take literature I bring in, but actually read it is a rare doc. So we'll see how this appt goes, see how much of the EDS data I brought at the last appt he read & if he & I are on the same page.

Oh & on a wonderful note the potty training is going wonderfully!

Two

That would be the number of fairly bad subluxations I am sitting here with right now. See it all started with a simple idea. Toad & I needed to swap bedrooms. Turns out I can't move a twin bed by myself. I can't get it to reduce right, neither will go where it needs to. My hand is major pins-n-needles now & my joints just ache, that deep, deep ache nasty pain. If I work hard I can push the pain back enough that I don't have to cry, but this is bad. I'm gonna take one of my muscle relaxers before bed & hope somehow the reduction-fairy comes in the night.

OUCH!

The most important post I may ever make

There are people you "meet" on the net, there are blogs you read, there are boards you belong to. Those people you learn a lot about, those people may be among your your dearest friends. Maybe once or twice in your life time you will find someone on the net that is a soulmate of sorts. Someone who become part of your every day thoughts. Someone who tops the list of people you would go see if you won the lottery. Someone you would count as family.

There is a woman like that & her name is Elizabeth. If you know her you know what an amazing woman she is & her struggles. If you don't then go read her blog Screw Bronze! & find out who she is. She has some hellish medical crap going on & she needs some help. She didn't decide to ask the world for a handout, many of us asked, nagged & pleaded with her to allow us to help. Her wife set up a PayPal account & blog for people to be able to donate & I ask you with all of my heart to please help her out, if ya got a spare buck please donate it. What I'd love is if you read her blog & it touches your heart to donate & then post in your blog about her. There are a ton of us sick bloggers, if we each chipped in a buck or two (& I know for most of us $ is super tight), it will make the difference.

Being a EDS Mom

There are things as a mom that are different for me than for those who don't have EDS. That's not to say the emotions I have aren't the same or similar to those who have other genetic issues.

I was walking my daughter home after school yesterday & the whole way I could feel her wrist slip in & out of joint. I don't hold her hand because of this or her elbow or her shoulder, but rather I let her hold a few of my fingers. That also helps so that if she does that kid thing where she just drops to the ground because she doesn't want to keep walking or go the direction we are going she isn't going to end up with a dislocation & neither will I.

My daughter is 3, I can't carry her anymore. She's just over 30lbs & I stopped carrying her for the most part once she had walking down pat. It causes me too much pain to carry her. I almost never pick her up anymore because it's not really an option anymore. I only do it if it's because there is a danger in not doing so.

I watch her move a lot. Looking at how she is using her body, seeing her do things that are EDS & having a sadness in my heart from it.

Plus there are the odd things at this house. Like say the fact everyone owns at least 3 weeks of clothing, including sock & underthings, because our washer & dryer are in the basement & there are periods where I can't go down those steps to wash clothes. Or the fact I don't walk down steps, I slide down on my butt. Or the fact some days I can barely walk from one room to another. Or the fact on bad days I drink almost nothing so that I won't have to walk up stairs to the bathroom. This is what my daughter thinks is normal.

The Sahara Lives in my Mouth

So the doc said I might have a bit of dry mouth with the Pamelor, but wow this is insane. It's as though I have a bunch of those suckers the dentist puts in your mouth in there it's so dry. I am moving it from a pm med to an am med since it really doesn't make me tired in the least. I'm not sure if it's making me hyper or if it's the lower amt of Neurontin that is doing it. Either way I am enjoying being awake, not groggy.

The bad news is that I don't think it's going to work well for the neuropathy cause that is coming back. I am so itchy, which I used to be before Neurontin, & the pins & needles are coming back too. The itchy is only on my lower legs & arms, plus the top of my chest, which is where it was before so I know it's not an allergic reaction. It might just be that the Pamelor just hasn't built up in my system. Oh & the eating is just ridiculous. I might gain 40lbs in the next week from how I am eating & you just can't help it. So far there is no effect on the headaches either, but it's only been 12 days & only 10mg.

So I'm stilling giving it a go, but I'm not sure how well it's working or going to work.

On a happy note Toad started using the potty! (If you don't have a child you may not get how wonderful this is, but imagine you had to handle items soaked in urine & feces 6-18x per day for 3 years & then you'll know why this is such joy.)

It seemed like a good idea at the time

So I decided instead of walking down to pre-school, then back home, then back down to get Toad & finally back home that I would just take my laptop with me & stay downtown. I really forgot to factor in the fact that I have to walk 1 of the 2 speeds I can walk or walking is very painful & my odds of falling are higher, but my child doesn't like to walk either of those speeds. Add to that the weight of the laptop pulling on my neck & I guess I should be happy I didn't fall. I am in agony & sitting in the coffee shop I just to work in. I am now trying to decide if I would do better staying here & walking home carrying this thing or if I'd do better resting for a tiny bit, walking home with the laptop, then going back down to pick up Toad & walking back. On Wednesday I'll just bring a paperback with & read.

On a slighty brighter note I have a school girl crush on the cute guy at the Y. I know cause I wore mascara to take Toad to pre-school, lol. I think I'll take this second to say that I am a single mom, not sure if I've mentioned this before, but I may have. Toad's biological father is not in the picture at all other than to send a few $ most months & we only dated for a few months. I just don't have the energy to deal with a relationship right now, I'm just trying to get thru life one day at a time. But just because I don't want a relationship doesn't mean I can't feel cute & flirt with someone, so I am flirting with the cute guy at the Y, cause it's fun.

On a very cool note I got a wheelchair for free this weekend! We went to run a few errands this weekend & stopped by Roomie's Dad's house. (Ok, this may get confusing.) Over the summer Roomie's sister, dad, mom & step-father have a ton of yardsales & most things get stored at Roomie's dad'd house. The step-father works as a trucker & is known as the guy who "dumpster dives", most of the time it's just stuff set out at the curb along his route or things people will ask him if he wants before they would throw out rather than climbing in dumpsters. So anyhow we stopped by & in the garage with the leftover yardsale stuff was a wheelchair, so I announced I was taking it. It's the first chair on this page. It's not new nor is it s perfect fit, but it's darn close & it's free. The armrests come off which I have to have or I can't comfortably reach the wheels to push myself, the legrests come off too which is nice since I often leg propel myself.

Oh & because I haven't change the topic enough times let's do it once more! I am switching meds from Neurontin to Pamelor & it's been interesting so far. I was on 600mg in the am & afternoon & 900mg in the evening for the Neurontin. I am now at 600mg 3x per day. As for the Pamelor I am at the 10mg 1x per day at night. I am finding I remember my dreams more, feel a bit less drowsy in the day, those are the good effects. The bad ones are I've become a total flamiong bitch (which I do hope will mellow back to normal bitchy) & the leg itchies have come back in force. I have scabs all over my legs from itching, ugh. It's like RLS except instead of needing to move I get itchy. So hopefully as I ramp up on the Pamelor it will go away again. I do like feeling more alert & dreaming again, but not if it means I have to be an obnoxious bitch who keeps itching her legs til they bleed. (btw: Neurontin=gabapentin & Pamelor=nortriptyline)

Assistive Walking Devices Epiphany & More Thoughts on Headaches

I just realized that I will probably not be able to use a walker or forearm crutches & I think I know why I have trouble with canes. They are transfer weight from the lower body to the upper body, correct? Where would that weight be redistributed to? Yes to the arms & from the arms where does it go? The back, the shoulder, the pecs & to the side. On the right side I am missing all the muscles on the front & side of my ribcage, which means the weight all ends up on my back & neck which isn't really helpful. Plus, add in that my arms are about 3" different in length & you can see that these devices aren't really an option for me. I don't know where I assumed the weight was going to, but it just didn't dawn on me that you need chest & side muscles to use these & that having arms the same length might be useful for pushing a walker. So I have decided I am going to start saving for a chair for times when walking unassisted isn't an option. It'd be nice if insurance would cover it since I'm pretty sure that my doc would write for it once I point out I can't use anything else, but since I don't need it 100% of the time I know they won't.

Ok so I've been thinking more about the non-stop headache I get. OSM suggested it might be related to Chiari, but I don't think it is. I really don't feel that I have Chiari, but I do think I have a structural issue. I think the issue is more likely to be related to the small bones shifting under the weight of my skull. I remember reading on another blog about a doctor at The Chiari Institute checking for that by having her person sit & the doctor used their hand to "lift" the weight of the head & I tried that with my roommate & my headache was cut by more than 1/2 & we didn't know exactly what we were doing. I do agree that there probably are migraines, but they are a symptom not the problem. I know a regular headache can trigger a migraine & I think the structural issue causes the constant headache & that in turn causes the migraine.

Is it wrong that I wish I didn't have to be my own doctor, that I want someone else to figure all this out rather than me trying to do it?

Oh & just for fun my right knee is jacked. I don't know if it's partially out or if it was & is now back but a tendon/ligament is still pissed about it, but it's driving me insane. I've tried a few things to get it "right" again, but it done't seem to want to be a normal knee. It's been wonky for a few days now & it does hurt, but it's like low level pain or wicked bad discomfort so I've just been dealing with it, but I am tired of this & want my normal level of crap knee back.

Starting Pre-School

Ok so now for something more cheerful, Toad's 1st week of pre-school.

There had been an Open House last week so she knew about school & was really excited. We walked to school (since I don't drive & it's only a few blocks away) & she was just about jogging the whole way. The pic here is from when we were in front of the school & I asked her to stop so we could do a pic, she opted to run to the door. When I opened the door she ran in & said "Mrs. N, Mrs. B, I'm here!" After about 5 minutes I left. When it was time to pick her up Mrs N said no one cried or got hurt & in the 3 yr old room that's a big deal. She told me about her day & said she loved it.

Wednesday went just as well. When I was leaving she told me "Bye-bye Mama, I see you tomorrow!"

When it was time for pick-up I was about 20 minutes early & the kids weren't in the class, so I wasn't sure if they were on a walk or in the kids gym (her pre-school is in a YMCA) so I asked the cute guy at the desk where they were so I could make sure I wasn't along the path they would come back & he said to go sit in the pool observation area. I hung out over there & watched some lady getting pool PT which was pretty cool. Then when it was 5 to 11 I headed over to the waiting area & all the seats were taken so I sat on the floor cause I couldn't stand. When it was time to go in the class & get the kids I had to get up off the floor which is an interesting ordeal which involves me contorting a bit & rocking back & forth a few times & then tossing myself up. I can't use my arms or the elbows go out. Of course the cute guy from the desk was there when I did it, but he thought it was a pretty nifty technique. Amelia was a bit cranky it was the end of the day, but all in all she loves it.

Important Request

If anyone knows what a normal damn body is supposed to feel like could they please let me know? Thanks.


So yesterday I went the neuro to talk about the other not migraine headaches I get. I get a lot of types of headaches. For migraines I get aura-then-migraine migraines plus I also get just-the-aura-then-a-slight-pressure migraines (those don't hurt). For my not migraines I get the daily never goes away at the base of my skull headache that always hurts just the levels vary. Sometimes (3-12x times a month) I get a worse headache at the back/base of my head. It lasts for 2-3 days each time (every now & again it will last for a 5 or so days). It comes often when the weather changes or if I've slept poorly or if the universe has just decided I look cute when I'm in agony. These headaches are ones I can sort of function with. I have lived with daily pain for my whole life so I am very good as pushing on when in pain. I usually wear tinted glasses, keep my fluids up & can run an errand or stuff like that, but I am very slow while I do it & have to lay on the floor a lot. Seems my neuro thinks these are migraines as well. Her thought is if it hurts like a bitch, makes your tummy feel like hell & like is a bit like a dagger thru your brain that you have a migraine. I thought if it didn't feel like my other migraines that it wasn't a migraine, guess that's not true. So now I have a dx of 3 types of migraine, lovely.

So just for the record let's look at what I've been dx'ed with this year alone that I thought were normal medical stuff I thought the whole world had to deal with but turns out a freaky things most of the world will never deal with, shall we? Good, here's the list:
2 new types of Migraine
EDS
PFPS-Really was EDS
Arthralgia-Due to EDS
Neuropathy
Not to mention the falls I've had to be treated for

Plus before this past year I have a few things wrong as well. Let's take a look at that list now.
Poland's Syndrome
Asthma
Migraine w/Aura
OA of both hands
OA of both knees
Kidney Stones
Scolosis
Chronic Severe Constipation
MVP w/Murmur
Irregular Heartbeat

So yeah if anyone knows what a normal body feels like please do let me know so I can figure out if I have 80 other things wrong that I thought were totally normal. Ugh.

Ok, so I feel a touch better now that I got all that bitching done, lol. Anyhow since I guess it turns out I am still getting migraines at least once a week my migraines aren't under control. My neuro wants to switch me from the Neurontin to Nortriptyline. So this week I was already trying to wean down to 600mg 3x per day on the Neurontin since I wanted to see if I could reduce the side effects, but not have the symptoms return. So now that it was 3 days already at the 600 3xs I have added in the Nortriptyline last night at 10mg. I will do 10mg at night for a week then I will take 20mg at night for a week, then 30mg at night from then on. I am to try to wean down the neurontin slowly & see if I can get off it without symptoms returning, if I can't that's ok. 300mg 3x per day would be ok & 600 3x per day would be acceptable. She also wrote me an rx for Vicodin & I got the drug lecture. I told her than if I take 1/2 a Vicodin with a low dose muscle relaxer I can sleep & usually wake with a much less painful headache if not returned to my normal low level pain. So if she could write for that she could give me less of the Vicodin. She did give me the muscle relaxer & the Vicodin as well. It's just a few of each, but when I can't sleep at night from the pain it's nice to know I have something I can do other than cry. When I get sent over to PT she wants them to do some work with my neck. I do wonder if there isn't a structural issue due to the ribcage issues & the missing muscles. I wonder if I am using shoulder muscles for things they “shouldn’t” be used for & there for pissing off my neck muscles. Oh & just for fun I have a history of mild mania & am on a tricyclic antidepressant (Nortriptyline), so life could get very interesting.

I’ll be posting about Toad’s school & how it went this week later today.

and now time for something completely different

Tea, yes we'll be talking about tea for a bit. I used to work in a coffee shop & people would always say how I must drink tons of the stuff & love getting coffee freebies, but really I'm just a Tea Girl thru & thru. I have a cup of tea everyday, until I find the perfect decaf for afternoons. I have either Irish Breakfast or Orange Blossom White Tea for my morning tea. I even keep a small tin of a few tea bags in my purse incase we go somewhere & I need a cup of tea. I have never been a big fan of green teas, every now & again I'll get the urge for a nice dragonwell, but for the most part I'm not big on greens. So anyhow, there you go a bit about me not related to my health.

Digesting Ehlers-Danlos

So I've just spent the last few days just digesting the info that I do have H-EDS. It kind of funny to me that I need to digest it. I was pretty sure before the appt & was fine thru the appt, but I guess it took a few days to really sink in. I know it doesn't mean I'm any more messed up than I already was, but it does mean I'm not going to be getting better. I spent a bit of yesterday crying, not a sobbing mess, but just letting out a few tears.

I think one of the hardest parts of all this is my sister. She died about 2 years ago. Right now I could really use her & this is the first time since she died that I need my sister. There were plenty of times I wanted her & missed her, but this is the first time I've really needed her. We could be going thru this together, but instead I'm alone. She had EDS, but of course we didn't know. She was in horrible pain for so very many years. No one took her seriously. My mother thought it was depression (which my sister had as well). My father thought she might be a drug addict, why else would she be so desperate for pain meds. I though she had pain, but I also thought she had stress & depression which made the pain worse & I thought she liked the attention of being sick. I guess in retrospect we were all a bit off the mark. Her docs thought she had pain, but really it couldn't be that bad. They gave her Percocets & she took Tylenol on top of that. She was very under medicated & due to the acetaminophen she was piling in she killed her liver, then aspirated her own vomit & died. In my opinion EDS killed her. If anyone had noticed, or realized this sooner maybe she'd be here, but she's not & I can't put words on how much I miss her right now.

Naps for the Slacker Queen

I think I need to think about taking a short nap in the afternoon. I know that makes me sound super slacker, but I am already tired all the time so it's not like I could get less productive & maybe I would have some energy in the late afternoon/early evening. I need to be able to get things done & right now I'm too tired. I think I also need to get a better rhythm on my day as well. Perhaps having a set daily routine will help me slog thru getting things done. I kept slacking because I thought I would get better, as that's not going to happen I think I need to come up with some coping techniques for the right now. (Yes, I do know I may be able to get better than I am right now, but I also know that I will always have some days like this or worse & need to be able to function on some level during those phases.) So I think starting next week I'll do a nap in the afternoon when Toad is napping. I can get some chores done while she's at school (or on the days she's not at school we'll do an hour of TV). Maybe that will help.

It is Ehlers-Danlos

Ok, so how did the appt go? Well I am the type who shows up early for anything & my letter said to be there at noon so I was there at 11.30, when I get there they tell me I didn't need to be there til 12.30. So I went down to the subway (it's not a real subway, it's just a little underground mall) & got a bagel & juice since I had forgotten to eat before I left. I got a good spot to sit & eat & read my book. I checked out the medical supply store there & felt like a kid in a candy store, even though it wasn't very big the plethora of wondrous things was astounding. Then I headed back up & checked back in & grabbed a seat.

Then I waited, waited, waited & waited. Finally my name was called. The woman who I saw the the geneticist's PA or something, I didn't ask her title. She did the family tree & did my height & weight & asked a bunch of questions. I didn't know the age of my grandparents when they died, but was able to make guesses that turned out to be within a few years of right so that was good. (Handy tip find out how old people are or were when they died before you go.) I gave her the family symptom sheet I had made at home. Then I went back to the waiting room where I prepared to grow old & die. At about a half hr later I got called back to meet with the geneticist.

I really had some butterflies going at that point & went back. We met in his office & the second I shook his hand I felt much calmer. His pic on the Mayo site made him look a bit formal, but he in person has a welcoming face & a friendly manor. I told him that I have Poland's & said I didn't know if the disparity between my sides would effect any testing & that side-by-side comparison of any joints would not be able to be done. I asked if he could tell me really quick if there were any updates on Poland’s & no they still hadn’t figured that out. He disagrees with the clot theory & thinks there is a genetic component. The first question from him was why I was there now. What did I want from this appt. I told him was there now because I went without insurance for most of my adult life & had insurance now. I told him I was running in to problems with pain & with my joints dislocating more often. I told him I wanted to rule out V-EDS & Marfan's & if we could rule in or out EDS & if in, then what type. I told him I have 3 children & I want to know for them. Seemed that those were good answers & we moved on. He asked about my joints & I showed him a few hand tricks & he said that I wouldn't need to change in to a gown unless I would prefer that. He said he would be able to tell me if I had EDS & should be able to type it. I kinda grossed him out with pulling my finger til the joint at the base separates (that, it turns out is a full dislocation). He asked if I was working & I told him I couldn't. He asked a ton of things about me & the rest of the family & ask if there were more family in the area, but there aren't. He checked my upper chest & skin stretch, plus my joints & how I move when I walk & my scoliosis. We talked about how my symptoms affect me & my life. He explained about the types of EDS & then told me that I do have EDS. I have H-EDS, or by it’s older name EDS III. We talked a bit about that & I asked if the collagen was defective, lacking or both. He said right now they don’t know for sure. He said his thinking about H-EDS is that it may be 2, 3 or more types of EDS being grouped as one. That for some families it may be a lack of collagen or for other families it’s another set of genes & they have defective collagen. I did ask if there was any other connective tissue disorder it could be or anything else it could be. He said no, I have EDS, he said it could be possible that my family is C-EDS, but with only me to examine he felt my symptoms only fit H-EDS.

I then asked about how old my daughter would need to be to be seen. He said some docs who aren’t as experienced my say there is an age children must be, but he feels confident /comfortable seeing kids of any age. I said I would want her seen before she was school age so I along with her pediatrician can formulate anything we need to do for school. He does not treat patients, so I won’t see him again until my daughter goes or if my mom ever moves out here & needs to be dx’ed.

I am kind of still wrapping my head around this, I know I knew going in that this would be the outcome, but that doesn’t make it easy to accept.

Tomorrow

It's the "big" day. I go to the geneticist. I've been spending the day making sure all my paperwork is filled out & making sure I have all my notes from when my mom & I did a EDS related family history. I still have to make a list of questions I have & note a few "odd" things, like all the male babies in out family don't grow for 6-12 months starting around 6-9 months old. No clue what that's about, but every single male, even out to 2nd degree cousins & this is 3 generations of data. Will be interesting to find out if that is anything. So I'll be working on my question list for the appt for the rest of the day. If anyone has any questions they can think of let me know!