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.
Showing posts with label ehlers-danlos. Show all posts
Showing posts with label ehlers-danlos. Show all posts
16 December 2008
14 December 2008
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.
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.
02 December 2008
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.
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.
05 November 2008
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.
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.
31 October 2008
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.
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.
30 October 2008
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.
29 October 2008
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).
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).
21 October 2008
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.
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.
14 October 2008
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.
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.
11 October 2008
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.
I guess I'm still getting thru my stages of adjustment. Blah, at least my mug is pretty.
03 October 2008
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.
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.
02 October 2008
& 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.
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.
29 September 2008
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.
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.
28 September 2008
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!
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!
27 September 2008
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!
OUCH!
25 September 2008
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.
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.
15 September 2008
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)
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)
13 September 2008
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.
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.
11 September 2008
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.
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.
06 September 2008
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.
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.
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