Re: Caro ... Hey, thanks and a mini novel from me :-)

[Guest guest]

In a message dated 3/1/2004 12:28:45 PM Eastern Standard Time,

c-clark05@... writes:

> Thought you might find this article interesting.

Dear God, that little girl is soooo sad.

I am not at all on that level. I do not feel *proper* pain in my super soft &

thick EDS skin. If you push a ball point pin into my upper arm skin, it takes

a while to register that it is hurting. So, because of this I been known to

sit on things. A bunch of keys will take more than a minute to register that I

am on something, another minute or so I will maybe realize it is hurting.

Then, I will move.

Another example: On the days when I go through not knowing where my feet are,

I tend to bump into the edge of my bed and cut myself. I ignore that small

scrape or cut, because it does not hurt enough to ... well, do any thing about

it. Yes, my mother would be horrified :-D. I discovered, I only feel pain if I

reach and touch the injury. My left leg right now feels okay. Hmmmm ... I just

touched the calf and there is a lump when I last bumped myself. It hurt when

I just now touched it. It stops hurting, immediately I stopped touching it.

No, I do not really know why.

The other thing is my second rectum/colon, on my left side. I suppose that

could be the part of me that really has no feeling. So, we can add EDS fragile

GI ruptures to my list of problems that does NOT give me pain. This is where my

body is weird. I only know about my history of ruptures for surgery for my

GYN problems. The doctors [yes, doctors ... three of them at one time -- working

in shifts; they said my small and large colon was a mess].

They did repairs on what they called excoriations. That was in 1993. Over the

last few years, I now know that if I do rupture, it hurts briefly and within

some hours the pain is gone. I've been told by at least two surgeons that I

heal TOO FAST. Yep. That is all I need on the list. I cannot find a thing about

people who heal too fast. Comic book people, but not real people.

Hey it gets worse. I do not turn red and swell up like I should. Imagine me

going to the ER saying I think I got a rupture. The doctor would ask where does

it hurt. HA HA! Lord help me. You do not know how often I have got sent home.

Because of this I gave up on doctors.

Hey, I am okay. I am now scheduled to be seen at an Institute of genetic

medicine AND the JFK Institute of neuroscience. Your neighborhood freak.

Do you know ... I have eyes that sprout tears when I get urgency that my

bladder is full. I tolerate BP of 300/200 and can actually feel my brain expand

and the blood rushing ... somewhere. I cannot wait for the neurologists to

explain that to me. I am aware I could have a fistula in the brain where my

artery &

vein connects and therefore I do not stroke out or maybe it is just that my

brain is so soft and stretchy :-<.

Finally, I have made a new discovery. Recently I wrote about the terrible

pain I felt in my ankles when I walked. I thought nothing of it. [Remember, I do

not feel pain INSIDE my body.] Well, tonight I made an interesting discovery.

I did an experiment with myself. I said to myself, let me *try* to touch my

foot where I *THINK* it hurts. So without looking, I reached for my right ankle.

And surprise, surprise ... OUCH :-O.

Wait a minute. I felt pain. That is GREAT! If it stays, I may be able to show

this to a foot doctor. It seems it is the right side of my right foot near

the ankle. Right above a round area of tangled veins or arteries ... I am not

sure. This spots swells at time but since it never hurt in the doctors office

when they touched it ... I have been unable to get treatment.

Well, let me repeat ... what a surprise. Today's pain appears to be blood

vessel. A Lumpy swollen blood vessel right where my ankle bends. If I press on

the spot my foot aches like when my BP is too low. [Reminder, I have both

Hypotension & Hypertension.]

But this is good. I can reproduce the pain, so that means some doctor will

listen to me and I can get my food checked out. If it still hurts tomorrow that

is. Sorry for the ramble and thank you for that article on the no pain little

girl. Caro.