Poland's Syndrome

Ok, so I talk a lot about my EDS crap, but what I haven't really mentioned is my Poland's Syndrome. In case you don't know what that is & want a lot more info check here. First let me say lest anyone worry, there is no connection between EDS & Poland's Syndrome that I have found anywhere at all. So if you found this blog because of Poland's & are freaked you'll end up with EDS, stop worrying, they have nothing to do with each other.

So, back to what I was saying, I have Poland's Syndrome (PS), right side affected, a mildly moderate case of it. I have no chest muscles what so ever on the right side except the ittiest, bittiest bit of a pectoral head, nothing on the side of the ribcage & some of the back muscles are missing too. (I think it's funny they are referred to as missing, like I can put up a poster on a telephone pole & someone will call to say they've found them. Well if anyone found them please leave a comment, lol.) I only have 2 bones instead of the usual 3 in my right index finger. I don't have any finger webbing thankfully. I do have scoliosis since birth from the Poland's too. I was dx'ed at birth with PS, it's usually pretty obvious so it's just a matter of a doc knowing the name or just looking it up. This isn't something that's affected my life a ton in a functional manner. Kids are wicked mean so I did have to deal with a lot of crap in the school yard.

I am a righty which surprises a lot of people. Now that I have the OA in both hands I have found my freaky little right hand has a lot more issues & I will never know if that's because it's my dominate hand or because of the Poland's. I can't move my middle finger well & the thing is curving over towards the pinky a lot. Hopefully I can get a ring splint for that finger cause if it keeps going I will have no function in it at all.

Since I missing an entire major muscle system I do have some issues with how I lift, carry & bear weight, add on to that the EDS which doesn't do well with weight borne incorrectly & I've got a lovely catch 22. That is part of the reason I hope to get sent to PT/OT down at Mayo rather than here in town. My small town doc's PT/OT is really going to have to be open minded & willing to learn a lot & change everything from the standard approach.

I'll write more on this as I think of things. The thing with PS is that unless you have a small child with it, are between the ages of 8-18 or are having surgery it's just not something you think of on a daily basis. I really do forget something that everyone one doesn't have a big hand & a little hand, lol.

Here's my right hand showing it's Poland-ness



And one of it showing it's EDS-ness

Don't you have anything but pain & sickness to write about?

Well yes I do, but I don't know that I will. I make this blog to write about my medical crap so that I have a place to do so. Trust me, no one wants to here this stuff everyday. The problem is I am stuck dealing with it everyday & so that I don't bore everyone around me I blog it.

On a happy note, the Genetics office called & I get to be seen there. I'm glad they'll see me. I was worried they wouldn't see me since I'm not already a patient of Mayo & it can be hard anymore to get in to Mayo if you've not been to one of their outlying clinics. The 1st appt they had was the beginning of Sept. My neuro told me it could be up to 6 months, so all in all not bad. I am going to call the assorted Drs I've seen & get copies of assorted medical files so I can bring that info with me.

I am thinking I may need to see someone regarding pain before then. My neuro said if I needed anything to make an appt, but I don't want to waste her time on something that my PCP should be able to handle. I tried taking some vicodin I had left over & it's really helped this past week. I'm only taking the tiniest of doses. I have 5/500 ones & I'm taking 1/4th of a pain 1-2x per day. So it's not like I'm super drug seeking here, I'd be looking for 30 pills to tide me over til Sept. I do worry however that my sucky PCP will not accept the word of my neuro & decide I don't have EDS & just send me for PT. I am not doing PT/OT until I have a firm dx of EDS so I can tell them what I can & can't do so I don't damage myself. I don't know, maybe I'll call on Monday & see if who I feel I should call.

Work, Pain & Processing

I work 20 hours one week & 9 the next. I am having trouble doing that. It's hard for me to admit that I might need to look at stopping working for a while. My job requires me to be up at 4-4.30 am 3 or 4 days a week depending on my hours. That combined with the standing for the whole shift & the leaning over & lifting are too much for me.

My pain levels are crap, I am never without pain. I am cane shopping so I can hopefully stop stumbling & falling. I have to use the wheelchairs in the big stores now. I've had my parking thing for almost 4 years now because of falling. It's been years now that I have days where I can not walk down steps & getting up them is always agony. Plus it's been almost 20 years that I have had a horrible headache, everyday.

I need to take some time & process what's happening in my life. I've now finally reached a point where I can't keep fighting this crap & I need to figure out how to deal with it. I can't keep denying anything is wrong & pretend that I'm going to figure out something that will fix it all & I can go back to my old self. I need to figure out how to make friends with this new me.

Hopefully I can get some PT & some braces that can get me to a much higher level of functioning, but that's going to be a while before I can get the dx confirmed, then I'll have to wait til I get referred to the places to try & fix what we can.

No patience

I am still waiting for a call from the geneticist's office to get my appt. I hate waiting darn it! I also haven't heard a word on the sleep study people yet & that's been 6 weeks or so. I called them to see what's up. I should hear back today on that, so fingers crossed. (Hey if a hypermobile girl crosses her fingers does she get extra good luck?)

I think I need to call my neuro back & ask what thought she has for me in the mean time for me to deal with my pain issues. She said it could be 3-6 months before I am seen by the geneticist. I really don't think that I can "suck it up" that long. I wonder if her friend who's a rhummy would see me? I wonder if I see that doc if they suck they would try to cancel my geneticist deal. I wonder why I fret about these things.

I really wish I had my own wheelchair somedays. Weight bearing is becoming harder & harder.

Ouch, Ouch, Ouch

I want to rip my right leg off & fling it in to the streets. Any suggestions on how to do that?

I worked an 8hr day yesterday, which may not seem like a big deal to most everyone, but for me is almost an impossibility. I work in a coffee shop, so it's all day standing, plus the floor is often wet so a fair amount of slipping is standard. Add to that my gimped knees & ankles & you end up with one hurting pup. At least I have then next few days off so I can recover & then go back to my usual 3hr days.

A bit about me & my medical crap. I have OA in both knees & both hands, plus neuropathy in my hands, forearms, lower legs & feet. My neuro & I also think I have EDS. I am waiting for a call for an appt from the referral she put in for me to a geneticist to confirm & maybe even type the EDS. I also have Poland's Syndrome too, which may be stressing my joints even more.