Saturday, July 26, 2008

So what's new & exciting?

Um, well nothing actually. Sorry if you were hoping for cool adventures with Jedi Knights & tales of me learning to speak Hungarian in just 1 hour.

I tried to use my exercise bike the other day. I was fine while I did it & even fine afterwards, but after an hour or so my knee left felt loose. Today is keeps slipping, it's super minor but it's super painful. So instead of taking a short walk to the store & get a Dr Pepper I am force to suffer without.

I have another Dr appt with my PCP in the middle of August. (Does anyone else think it's funny that's the abbreveation that docs get? Come on, doesn't anyone else think it's funny? Phencyclidine? Get it? Ok, time to get back on task.) I am going to send him an email before then & tell him we need to do something with my knees & my fingers & see if he wants to do that as one appt or two. Also going to mention that my neuro is sending me to Mayo & see what his attitude is regarding that. I really don't like my doc & don't think much of the care he's given, but have waited thinking he might suddenly become a wonderful doc, but I don't think that's going to happen. So if he has no clue what EDS is he can go study now rather than impressing me yet again with his poor skills.

So there ya go, that's what's new here. Maybe next time I'll have some cool Hungarian Jedi adventures for ya.

Saturday, July 19, 2008


Only 1 big store per day & no more snapping my fingers.

Why do I forget that either off these thing causes hella nasty pain?

Friday, July 18, 2008

Just for fun, a non-illness post!

So last night at 2am I was sleeping soundly. I woke up because my cat ran across my chest (last time that happened there was a mouse in my room) so I woke up & clicked on the light. (I have my bedroom light on a remote due to how often I would hurt myself trying to get back to bed after turning the light off.) As a lay there trying to figure out what's going on I see my cat chasing a butterfly! Uh, wait, there is no way a butterfly is in my room. Blink 2-3 times & realize it's a damn bat! Oh, this is so what I need at 2am! So as the cat has the bat cornered & I'm a bit freaked as I'm still half asleep I run to my roommate's room & wake her up. She is now awake & just as freaked as me, well maybe more since she is terrified of bats. She goes down stairs to find something to capture the bat with. She leaves me with the instructions to make sure the bat doesn't leave my room. Now the other cat saunters up to see what all the fuss is about. He trots in the room & about a minute later he comes out with the damn thing in his mouth! So he runs down stairs with me chasing him yelling my lungs out. He finally drops it & my roommate flips a box on it, then we slid some cardboard underneath. We also attach some yard to the top, slid the whole thing to the back porch, closed the door & pulled the yard so the box came off. The bat just laid there for about 3-5 minutes then took off. Then I got to try to change my sheets & go back to bed. Took me like 15 minutes to change my sheets, cause my hands were being cranky & so was my ankle, but I got it done & fell back asleep.

So what did you do last night? Bet it wasn't that much fun!

Uh, so what is Ehlers-Danlos Syndrome?

Ok, here's what Ehlers-Danlos is for those who want to know.

"Ehlers-Danlos syndrome is a group of rare genetic disorders affecting humans and domestic animals caused by a defect in collagen synthesis. Depending on the individual mutation, the severity of the disease can vary from mild to life-threatening. There is no known cure. Treatment is supportive."

"Individuals with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen. Collagen is a protein, which acts as a "glue" in the body, adding strength and elasticity to connective tissue.

Ehlers-Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders, characterized by articular (joint) hypermobility, skin extensibility and tissue fragility. There are six major types of EDS. The different types of EDS are classified according to their manifestations of signs and symptoms. Each type of EDS is a distinct disorder that "runs true" in a family. "

The symptoms I live with are:
Skin hyperextensibility
Wide atrophic scars
Subcutaneous spheroids
Manifestations of tissue fragility
Skin involvement (soft, smooth and velvety)
Joint hypermobility
Recurrent joint dislocation
Chronic joint or limb pain or both
Thin, translucent skin
Intestinal fragility
Extensive bruising
Early-onset varicose veins
Gingival recession

Wednesday, July 16, 2008

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
Poland's Syndrome

And one of it showing it's EDS-ness
Fingers Crossed!

Tuesday, July 15, 2008

A couple of things

1. If you read the last post you know I quit my job. I physically could not do it anymore. I was in such pain. I was dropping things more & more. The exhaustion was more than a person could bear too.

2. Sleep study results are in & I do not have apena, just like I told the doc. Well, I shouldn't complain, he did listen about my having been so tired. The downside is I'm back to square one.

3. The more I watch Girl-Child I can see she is very hypermobile. I'm praying she's so bendy due to being 3 rather than EDS, but my heart says otherwise. I look at her legs & ankles when she stands & it matches me at that age to a T. I watch how she rolls her ankles under at will to fall.

4. I'm not sure if either of the boys have it as neither live with me. Eldest-Boy I placed for adoption when I was 18. It's a very, very open adoption so his mom & I talked & I send her a ton of info & she doesn't see anything indicating EDS. Once I am dx'ed I'll suggest he is seen to double check. Unsure about Boy-Child he lives with his father. I will have to talk to him & see how he is doing. Oddly enough both boys went thru a phase where neither grew for about a year when they were 2ish. I'll have to double check on the age to be sure. When it happened with Eldest-Boy the docs were wondering if he might be a little person. My mom said it happened to both boys of a first cousin of hers, so Eldest-Boy's doc said they would wait to do anything then & he isn't a little person. When it happened to Boy-Child we knew it probably would happen so no one batted an eyelash when he did. I have no clue what bearing that has on anything, but it's interesting & it's in the same family line as the EDS.

Random Encounter

So I went to the grocery store last night cause I needed to pick up a few things (forgot 1/2 of the stuff I went there for, darn I need to make lists, but then I forget the lists). Anyhow, as I was leaving I ran in to a woman from my old job. I hadn't seen her in a while so we were catching up. I told her how I had quit my job & my last day had just been the day before. She had asked why I had left & I told her really it came down to my health. I just couldn't do the job anymore, I was killing myself & my boss wouldn't allow me to work less hours so there really wasn't a choice. I needed to do what was best for me. She knew a bit about my health & I told her that my neuro & I had talked & that I was going to be going to Mayo to see if I had this condition that cause problems with my joints & connective tissues. She asked if it was called Daniel's something. I told her no it wasn't, but it was called Ehlers-Danlos & sort of sounds like Daniel. She said a friend of hers had this as well. Uh, what are the odds?? I live in a town of 16,000 people. If EDS is one in 5,000 then that means (statistically & in a broad non-literal sense) there are 3 of us in town. My jaw about hit the floor. She told me about her friend & the problems with her health. She's in a wheelchair & can't even take care of her kids by herself. She finally has the docs here understanding that she's not a pill seeker, I should find out who she sees. I told her to please pass on my name, # & email. I told her that I felt the expression "Misery loves company" had a different meaning for those of us with chronic illnesses. It's not that we want others to be in as much pain or deal with what we have to, it's that we just want someone who "gets" what we deal with. Who can relate, who knows about our fears & pain. Someone who can understand when we bitch & moan about our problems we don't want someone to sit there & give suggestions (odds are we've heard them a dozen times), we just want someone to say "I know & it sucks" & really does know. I hope she calls.

I've got some other odds & ends to post, but I want to do it in another post.

Thursday, July 10, 2008

Sorry been a bit odd here

Well maybe odd is the wrong term, odd is my everyday.

Anyhow, I hurt my foot. I thought it might be a stress fracture, but it was just tendonitis. I am on Prednisone for it. First time I've had tendonitis anywhere except my arms. Thankfully the Prednisone seems to be working so I can walk again. Still hurts & I can only walk in my Crocs, but beats all hell outta being layed up on the sofa in pain.

I have decided I need to quit my job. I just am not physically able to do it. The walking, standing & running are just more than I can handle. I ended up missing 2 days of this week (my last week) due to my foot, which just re-enforces the fact that I can't work. I'm out with a docs note at least so they can't think I'm faking. I am planning on going back to school here in the fall & will go to school from home.

I also got a laptop about 2 months ago & just last week finally was able to afford a wireless router so now I can finally use my laptop as a laptop, lol. I am shocked at how much difference I find in what I can do on it compared to my desktop. My roommate took my old desktop cause it was much, much newer than hers. So both of us ended up with a much better computer than we had.

So they messed up my sleep study results. I had the thing on for like 10 minutes, but it wasn't working right. I then wore it for the whole night, but the tech only sent the first 10 minute part to the doc, so I called & got that corrected. They told me they would get it to my doc the next day, but it's been 4 business days & he still doesn't have it so I guess I'm going to have to call again.

Ok, I'm all typed out for now, more later maybe.