Sunday, August 31, 2008

My heart broke today

Today was one of the worst days a mom with EDS can have. Girlchild is to young to be dx'ed with EDS according to the "rules", but today I not only realized she as the same HCTD I have, but I caused her joint to come out. I could die I feel so badly.

I was putting her shirt on & she didn't want to put a shirt on & was fighting me a bit & her elbow went out. She was more upset than in pain & it went right back in after she moved her arm the same way I do when my is just a bit out. I have to will make sure I hold her upper arm from now on, not her hand.

How, as moms, are we suposed to deal with this? The guilt is so massive. She is fine & bounced back quick. She flexed her arm a few time over a few minutes & that was it. Ugh, this sucks & it's not going to get easier to deal with I bet. Somehow I think a mom's heart breaks each time their child has a dislocation.

Friday, August 29, 2008

Random Little Things & Some Pictures

Pictures are always fun so I'll start with those. A while ago I took some pics of me doing some EDS "tricks" so that I could ask a group of people with EDS if they thought I may have a HCTD, they thought I looked to be a person who could & told me to ask my doc. Both my docs agreed. I looked at a lot of pictures on the web & kept saying, yeah, but everybody can do that. So I'll share with you a few of my pics, perhaps if you are wondering if you have EDS you may see these & realize it's worth asking your doc about.

Ehlers-Danlos Syndrome
My leg turned in. Both legs do this, but this is just the one turned. I can go further than this, but if I do I causes mild pain, when it's just this far it doesn't hurt.

Ehlers-Danlos Syndrome
Then we have my crap ankles. The left leg is fine, no discomfort standing like that. My ankles roll like that, & more, while I'm walking & cause me to fall & that part sucks, & hurts.

Ehlers-Danlos Syndrome
Then the here's the easiest "trick" I've got, but oddly enough this one seems to gross people out a lot. I really don't understand why this one bothers people so much. This is called Swan Neck, I always called it Witch Fingers, lol.

So now on to my odds & ends. I went to the Parents Orientation for pre-school last night. I really think this school is a great one for GirlChild. She's going to have so much fun. I did mention to the one teacher that she may be a bit more prone to falling than the other kids as her ankles are kinda crappy already. Speaking of she fell & busted her lip today. Her tooth punctured the lip, but thankfully it didn't go all the way through & stopped bleeding before too long.

I am still feeling scared about my upcoming appt. Like what if he laughs me out of the office for wasting his time?

Oh & incase it wasn't obvious my headache is pretty much gone.

Thursday, August 28, 2008

Ow, Ow, Ow, Ow

& just in case you weren't sure Ow.

I have had this one headache at the base of my skull for most of my life. Most days, it hurts, but it's not horrible. It's a bit of a bother, but for the most part I can just ignore it. Every now & again it turns in to headache from hell. Then it hurts as bad as my migraines, but it's not a migraine, nothing much works on the pain either. I just have to wait it out. I've tried going to the E/R for the pain, but as I can't have Toradol they assume I'm a junkie. I'll be seeing my neuro next month & will be getting a headache plan written up & in my file so that they will give me something for the pain so I can at least sleep my way thru it. It usually last 1-3 days, sometimes longer.

So anyhow I'm on day 2 of this beast & was up most the night from the pain. Tonight I get to go the the parents orientation for pre-school. This should be fun. Think they'll mind if I writhe in agony under a table?

Monday, August 25, 2008

Disabled, what does that mean?

Really I don't quite know what disabled means. I know the Websters on it, I'm able to read it & comprehend that. What I don't know is if I am disabled. There are so many forms of disabled that I don't know where I fit.

There is the % disabled where your STD or LTD decides how much to pay you based on how disabled you are. Well I'm not collecting that so that doesn't apply.

There is SSI/SSDI disabled where everyone (well except for those folks who pray for you & think you ought to drink wheatgrass & try harder) agrees your disabled. Well I don't get that yet so I'm not SSI/SSDI disabled.

Then there is the obviously something is wrong with her disabled, the sort where people look at you & say "well bless your heart, your such an inspiration!". I rarely ever get that so I don't think I'm that kind of disabled.

I do have a parking permit which makes some people give me rude faces, but since I fall randomly the DMV says I'm disabled.

My roommate says I am. So I wonder, when do you "become" disabled & how do you know? I fall randomly, can't work, am in constant pain, have problems with my legs, arms & head. Dunno, think I'll get a note in the mail to let me know?

Sometimes Wheelchairs Suck

Yes, I know, really I do; they are a wonderful invention & are a great thing, but with that said please allow me to begin bitching about them a bit.

I went to the zoo with my daughter & my roommate this past Friday. This zoo is all trails so it's a place I can not do without a wheelchair, & as I am a broke girl, I don't own one. So when we got there the only one they had left was the oversized chair. Now I do think it's great they offer an oversized chair for people, but OMG if you aren't oversized that thing is a torture device. Because of my PS I can't use my arms to wheel very well, which means I wheelchair-walk most of the time. (Ya know sitting & then walking the chair along.) These chairs weigh twice what most chairs I use weigh. I couldn't reach the wheels at all to have used my arms if I wanted to.

Plus the makers of the trails we were on assumed you had a very strong carer with you to push you up the steep grades they had. I didn't. I had to either use the chair as a walker or use the railing on the side to pull myself along. Yeah, that'll help me with my dignity. After an hour & 1/2 we stopped to eat & I checked back out front & they had a normal chair again, thank goodness cause I couldn't have continued with that other chair. We spent 3.5 hrs there, I never would have been able to do that with out a chair, so all in all I am thankful places offer them, but damn if I am gonna try the oversized chair again. I also learned that when trying to build some speed to get going while using your arms those handles really get in your way.

So now my questions about chairs. If anyone knows, please leave a comment for me.

1. Where does your purse go? It gets in the way on your lap, on the back anyone could steal from it.

2. Since I don't own a chair I didn't get the Emily Post's guide to Chair Etiquette, sorry. When a wide bit of trail or road is 90% clear & it's down hill is it ok to zip along at a nice clip as long as you have full control of the chair & can stop or move quickly if needed? If so why did the few people I went past look at me like I was breaking some cardinal rule?

Thursday, August 21, 2008

More about Poland's Syndrome

Well it's just so hard to find info about Poland's & hard to find people talking about it. Most people who are talking about it are parents with an affected child, not adults who have it or they are people who are severely affected. So here are some further details about my PS & how it's effected my life.

I was dx'ed at birth because my pediatrician was familiar with PS. My hand is pretty noticeable if you're looking right at it, as was my chest. While I was in elementary school the only thing that was different about me from other kids is that I couldn't cross the monkey bars or do cartwheels. Aside from that my PS didn't have any real impact on my life. I would hold my right hand so that the fingers were curled under the palm, like a relaxed fist so they were hidden when I wasn't using my hand. Heck I still do this. Once I got to middle school/jr high life kinda became hell for me due largely to the PS. The other girls were getting breasts & I was getting a breast, yeah notice the lack of plural on that. I was never good in gym & had a lot a problems there, but once I was expected to change clothes so that the whole class (well all the girls) could see this? Oh hell no! I simply stopped taking gym most days & failed every year from 5th grade to 9th grade. The teacher would come stand next to me & make me change sometimes. I was mocked for my lack of breast on the right side almost everyday. If I knew then what I know now I would have made my mother pull me from school & do home school or just pull me from gym.

If you have a pre-teen who has PS please for the love of all things holy keep an eye on if they are being mocked & make sure to buy them some of those silicone breast forms, you can pick them really cheap. Also if they have swimming for gym find out if they want to take it, don't assume they will want to since they might like swimming &/or gym. If they don't want to take it get them excused. I was so horrible depressed during that time. I of course failed the scoliosis check each year. You'd think that if you fail once & it can't be corrected you'd be excused for the other years. What the hell is up with having to do that each year? I did I honestly wanted to die from dealing with the mocking & gym class. If you're a parent you kid may be fine in school, so this isn't want will happen, but it could.

In 9th grade I switched schools due to a move & I just skipped gym & was fine. I made sure to get an A in health & so I'd then make out with a barely passing D- for gym/heath since they were graded together. In 10th grade I switched to the Catholic school & there I was again fine. I flat out told my gym teacher I would not be taking gym & would not be changing. She would let me jog or jump rope in my regular clothes & would give me a D for that. I figured that was quite fair & did it. Add in my A in health & I was getting a high C. I eventually did find a good method for stuffing my bra & would change sometimes.

So there you have birth to the end of school, I'll do more stuff later including my breast reconstruction.

Wednesday, August 20, 2008

I am a killer

It's true I am a cold blooded killer. There he was, I first scalded him with super hot water, then when he was stunned I grabbed a chopstick & shoved him down the garbage disposal. That'll teach a millipede to mess with me!

I about died of fear when I saw it, I am such a wimp when it comes to bugs. Took me about 10 minutes to kill it. I'm just glad it was in the sink with the disposal. Sometime I love having an old house & other times I hate it. Bugs get in an old house way to easy.

After having been on Neurontin (gabapentin) for about 10 months I am starting to notice a side effect that I do not care for. I can't spell anymore, not that my spelling was perfect before. I used to just have problems with certain letters, like d, p, b, q & t, for some reason I have always mixed them up when writing or typing. Now I can't figure out what order letters go in a word & am mixing up a lot more letters. It drives me batty, I'll mention it to my neuro next month & see if there is any medical issue with that. If not, which I figure there isn't, I'll just have to deal with it. It is a total pain in the ass though.

I finally got all the forms filled out to see if we can get assistance for GirlChild's pre-school. It took me over 2 weeks to do it & I'm only half way thru the registration forms. It's so hard for me to write anymore & the forms are by hand. The one form made me chuckle. It's incase of a nuclear reactor meltdown it's to allow them to take your child to a safe area. All I could think was of a teacher saying, "Well Timmy we want to take you to safety, but your mom never signed the form so we're leaving you here."

I'm attempting to make eggplant tonight for dinner which should be interesting since I've never made it before & I never seem to follow a recipe. I'm not such a good cook I should wing it, but it's more fun that way.

Monday, August 18, 2008

Trouble Keeping Up & Fear

I am having a hard time keeping up with orders from my Etsy store due to my crap hands. So far I'm able to just barely keep up & some orders are a tiny bit slow. This is my only income so it's stressing me out. Hopefully I can get a recommendation from the geneticist for some ring splints to help my hands keep up.I have coban tape, but that isn't as sturdy as I need.

I am really starting to get scared about my appt at Mayo. I can't decide if a good appt will be one where they tell me I have EDS (or another HCTD) or one where they tell me I don't. If I have a HCTD then I have a HCTD. That means I am stuck with this crap for the rest of my life, that means my kids may have this, this mean I could have heart problems, this means I'm not going to wake up one day & be "all better", this means I will probably spend the rest of my life in pain of some level. On the other hand if I don't then what the hell is wrong with me? Why do I have this many problems? So I am just scared because I don't think this can be a good appt. I'm either back at square one or I'm fucked up. Neither option sounds like a good one.

Oh & it turns out my elbow was fully out this past Friday & it was the upper part (humerus) this time. That one kinda grossed my roomie out. It wasn't a pop-ish noise it was more of a soft thunk & she could feel it go back & see it go back in. When it's the lower arm it a quieter noise & she can sort of feel a tiny shift, this was quite different & apparently was kinda ick. It's strange to me, that I thought I was just cracking my joints, but it seems I was actually putting subluxations & dislocations back & never knew it.

Friday, August 15, 2008

Should be an interesting day

& by interesting I mean crappy.

So Girl-Child got her chicken pox vax she'll need for pre-school yesterday so I'm sure she'll be cranky all day. I can't believe she's old enough for that already. It's just 2 mornings a week. She's supposed to get a backpack large enough to fit a folder in. That would be mid-thigh or knee on her. I think I'll make a 1/2 sized folder & they can just fold the papers they want to send home in 1/2. My thoughts are until we know if she has a HCTD or not, then lets assume she might & minimize any joint damaging activities. And on a side rant, what is up with the fact they want 3 year olds to carry backpacks that size & that schools think nothing of having 3rd & 4th graders carry 20lbs on their backs? Would they carry that proportion of their body weight on their backs? I think that's a crock of shit.

We are going to have to start switching bedtime/wake-up time for Tiny Miss Girl-Child soon too. She has be getting up at 9.30 or so in the morning & school will start at 9, so she's gonna get up at 8ish I think.

I have been zombie exhausted for the last week or two. Plus my left elbow, yet again, is out of wack. Really would it be wrong to gnaw my own elbow off? I'll prob just ace it in a neutral position til my roommate gets home to help me put it back. I have no clue why this started up, my elbow used to be fine, but it's gone all to hell now.

Ok, off to finish my tea & go pry that baby out of bed.

Wednesday, August 13, 2008

Dr Appt Today

I had an appt with my GP today. I wanted to see him before I go to the geneticist for a few reasons.

Firstly I thought it would be a good idea to run past another doc to see if they also agreed that it's likely that I have EDS. He felt that I am incredibly hypermobile & that I do have a heritable connective tissue disorder, of which EDS is one. He wondered if I might have Marfan's, but I really think that's unlikely. I bet he's never before had a patient put their leg behind their head in an exam before, especially one sitting in a chair with armrests & a patient who was fully dressed at that, lol.

Secondly I wanted to know if he would want to be the guy who gets to run the train wreck that is my health. As I am now super interesting from a medical perspective he's totally wanting to be my doc.

Thirdly I wanted to see if I was going to want him to run the train wreck. He apologized for not having noticed this sooner since once I brought out a few circus tricks it was very obvious that there is something going on with my whole body. I said jokingly that I wouldn't have figured it out if I hadn't be researching stuff related to the PFPS that he dx'ed me with & he said no, he felt it was all me who figured this out. I also said I was going to want/need some PT & OT & splints, braces & orthotics, plus some checking on my heart too. He will send me out for anything I need. He first wants me to find out what disorder/syndrome I have so we can figure things out in order of urgency. He is leaning towards getting me some custom orthotics, maybe foot ankle orthotics with a podiatrist. (Is it wrong to ask for a foot rub at the podiatrist's office? Eh, probably.)

So it seems that 2 docs think I have EDS or something similar & both agree I need to be seen by a geneticist to determine what it is I've got going on. It also seems my doc isn't a crap doc that I often accuse him of being, but rather a doc who kinda needs a kick in the pants to get a ball rolling & is fine with me being the one driving this train wreck to wherever it's going.

There is a difference between the haves & the have-nots in life. He told me he couldn't understand why this wasn't discovered sooner since once you looked at a few things it was really obvious. I had to explain that not all of us have had health insurance our whole lives. I told him that from age 18 til now (age 33) I had insurance for 1 year when I was pregnant at 19 & now for the past 4 years. Of the last 4 years I've been his patient for 2 & the 2 before that I was pregnant & then taking care of a sick baby. When you've a sick child you have to put yourself second, doesn't matter what's going on you. I told him I have a variety of crap going on from the last almost 16 years & other than emergency stuff I've had no care. So there is a lot of things that need tending to. I've never seen anyone for my kidney stones, I haven't seen anyone regarding my heart since I was dx'ed @ 15, so lord knows what's going on there & he gets to try to figure out this stuff & send me all over the place. He's up for the challenge & I think I'm going to give him the chance.

Ok, that's enough for tonight, if I forgot anything I post it tomorrow.
Nighty-night all!

Monday, August 11, 2008

I'm feeling grumpy

I'm feeling grumpy today. My hands are not doing their best & the cooler weather, while overall doing well for me, it giving me a nasty headache. So I'll maybe write more tomorrow when my head feel better & maybe my hands will too.

Saturday, August 9, 2008

Stupid Thumbs

My thumbs are killing me today. I over used them earlier this week, then had to use them today so now they are all pissy. I've got it taped up a bit & that's helping, but I'm just guessing on how to wrap them. Hopefully at my dr appt this week I can get him to send me over to PT/OT & get something til I go to Mayo. Even if it's just taping lessons, lol.

My elbow came out again this past week. I wonder if I just hadn't gotten all the way back in the first time. Got my roommate to pull the arm while I rotated & that worked much better than earlier in the week when I had to hold the joint while I rotated it. Seems to be back to almost it's old self again.

It's funny in some ways I seem worse since I found out I probably have EDS, but it's just that my understanding has changed. I used to just keep pushing myself if my knees hurt because I knew what the treatment options for OA were if I damaged them, but now know that most of that isn't really an option anymore & that the options left are less likely to work, plus the fact that odds are that I've got another 50 years with these knees & they aren't going to get better. I labored under the delusion that if I kept pushing they would get better. Knowing that what I thought of my ankle just going out from under is actually a my ankle coming partially out of joint, it changes how you react to the injury. I used to just ignore injuries & just push thru pain, now I stop & treat the injury. That's such a change for me.

Tuesday, August 5, 2008

Voice recognition hates me

Well I finally broke out the voice recognition stuff & am trying to use it at the moment. Hopefully it’ll do better at recognizing my voice and I can actually use it instead of typing. My left elbow that I sublux’ed last week is hurting and I think of pinched the nerve. The pins & needles numbness down my arm and in my pinky, ring finger and palm is much worse than usual & it constantly feels like someone hitting my funny bone. The best part of all is that I can only “type” in word because for some reason Microsoft assumes that I have no need to “type” have anywhere else. So I have to “type” everything in word & then copy-paste in to whenever it is that I’m actually wanting to use.

It’s taken me 23 minutes to type this. Hopefully my elbow will feel better & I’ll be back to typing soon because if not in the go insane trying to use this voice recognition crap.

Sunday, August 3, 2008

Illness vs Me

This past week I fully dislocated my right ankle & subluxed my left knee all in one fall. Thankfully once I took the weight off my leg & turned my ankle a bit it went right back in, my knee just did a slide out & back which it likes to do from time to time when I twist wrong. As I mentioned the other day I also subluxed my left elbow just resting my head on my hand with my elbow on the desk. Yeah been a crap week on that front.

I think I am going to have to concede that my cane isn't working. With 2 bum knees & 2 crap hands how does one use a cane without ending up in even more pain? Got a suggestion cause I haven't figured it out yet.

Oh & on a totally random note I finally got a cooling thing for my laptop so it stops getting so hot when I use it.

Plus my fatigue is back in force. I don't mean I'm a bit tired, or that I'm not sleeping well. I am sleeping like the dead & getting what should be a great night's sleep except when I wake up I'm ready for a nap. My body feels like it's moving thru quicksand & it takes so much energy to do anything. Hopefully it's just a phase & gets back to my normal tired instead of this super-double tired I've currently got going.

Friday, August 1, 2008

Fakers, Lazy & Fear

Well I've got to that point, the same point everyone under the sun gets to who has a physical disability that starts up suddenly, slowly or otherwise. It's the point where you realize that people around you who knew you when you were "fine" think that if you really sucked it up & just pushed harder you would be fine again. Um, first off why are they so vested in making sure you look well again rather than making sure you feel as best you can? I wonder if it they think you've just decided to be lazy? I wonder if it's their fear that this could happen to them?

I don't know, but I do know that sitting with my old boss listening to her complain about sick or disabled people who should just work harder to be well makes me worry about how long she will still count me as a friend. Who knows maybe she does already, but was being polite & that's why she was willing to talk to me. Maybe that's why she brought up other people we both know & went on about how they should just push thru it. With her I wonder most if it's lack of understanding or fear. She has a few medical issues herself & keeps going, maybe she's afraid she's next? Who knows.

But people like that make me fear I will be thought of as lazy or a faker so I keep pushing myself as hard as I can. Has that gotten me better? No it's actually made me worse. Does that stop me?: No, so far it hasn't. I am scared to get crutches because I am scared of the crap others I know will give me, so instead I stay in my house all day & do nothing.

So I'm at that point where I am on the tightrope between well & disabled. At some point I will fall & no that's not be being a pessimist, it's being a realist. I subluxed my elbow by sitting at my desk with my head resting in my hand while reading something on the computer. Yeah, that alone is enough to cause my elbow to come part of the way out of joint. I am going to get worse.