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.

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.

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.

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).

21 October 2008

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.

17 October 2008


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.

16 October 2008


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.

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.

12 October 2008

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.

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.

10 October 2008

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.

09 October 2008

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.

07 October 2008

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?

06 October 2008


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.

05 October 2008


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.

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.

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.