My Intro and its long .....

[Guest guest]

Hi my name is , Im 41 mother of 3. 22 year old girl , 16 and 9

year old sons.

My beginning of REAL chronic pain started in " 93 "

I broke my Right ankle putting my then 4 year old to bed. It was a tib

fib and the socket sorta of the ankle. I tripped with my son in my arms

on the blanket and so as not to fall on him I twisted to fall on my back

and my body twisted but my foot was caught on the bottom of the couch. 4

surgeries and a year of non weight cast and a year of PT i am walking

again.

But the first month was the beginning. I had such horrible pain. Pain

where I would have 10 kids no pain meds and like it compared to what I

was going through. I wanted to cut my leg off. I had RSD and the DR DXed

me 3 months into the break after i told him if he told me one more time

how it ** shouldn't hurt that bad** again i was going to make him a DR

on a stick. ( meaning i was going to stick my crutch where the sun don't

shine )

Anyway, I tried all kinds of meds and drugs. Nothing was working and all

along I had a horrible case of Crohns going. I didn't know what it was

but all the pain meds kinda helped me to ignore it a lot. Even though I

was loosing weight from the diarrhea. I was also anemic from the blood

loss which is why I went into see the GI Dr. That pain was nothing

compared to the RSD. Now I hadn't brought up another problem. I have had

Hidradenitis since I was about 13 but I didn't know what it was and

either did any of the Drs. I had seen over all those years.

This brings on boil like lesions that are BIG time painful. but that I

also just dealt with. The RSD was my main pain at the time and it was

new and it shook my body so hard with pain, ppl that new me would just

look on and whisper behind my back. LIKE i was deaf or something?? lol.

Yeah I know they were worried, they all knew I didn't complain and they

could see this was breaking me. Hard and fast.

So years passed the Crohns and the RSD took its toll on my body.

Depression set in nothing worked for the pain I went off my meds and got

pregnant. LOL This was not planned. It was make up sex after a good

fight with the now X. The pain took a lot from me my marriage is just

another thing it took. Its was a horrible pregnancy. Pain and illness is

not the way to go. I had my now 9 year old. healthy and happy kid he is

....

Anyway I by that time was on disability. My Crohns got worse I was a nut

from being a diabetic now from being pregnant 3 times it never went away

this last time. The Crohns had me on prednisone and it was what saved my

child. it was all I could take and stay alive myself while pregnant. So

I was a HUGE HORMONE I was really nuts after the baby came.

To top it off I was nuts and in pain. Yep you all are just lucky you

didn't meet me in a dark alley back then. Lol... so now with all this

going on My Hidradenitis (Hs for short) took off into stage 3. I

couldn't move walk, lay down, sit, nothing. I was a mess and this pain

is pretty close to the RSD its different but man its bad. These boil

like things I call aliens get to the size of large oranges.

Well I think i will send you to the site where I am the IL contact have

a yahoo group also. Well there is one for about every state. Anyway

www.hs-usa.org this can explain what it is better and you can see

pictures too so you can get a better idea.

So I guess right now as it stands meds for the crohns messed up my lymph

nodes where the HS had took hold also and i had cancer in the nodes but

they found it so fast because if the surgery's and skin graphs for the

HS so I went through a lot of craziness from 99 until now. with 2

cancers scares. Well they were both real and its drug induced from the

meds for the crohns and my immune system is so strong its attacking me

anytime there is any bacterial activity which the HS is a huge maker of

that so the crohns and the HS gets worse and oh I forgot .. some where

in all this mess I was DXed with RA which is common I guess for ppl with

crohns.

So on and on at this point in my life I am on duragesic 75's and

oxycontin liquid drops ( cant digest pills to well with the crohns so

this way I get the meds) though I don't do the drops until I cant take

it anymore. But these days I just don't care about addictions..

After the surgery's and skin grafts for the HS and cancer the RSD

spread up my right side. I thought I was having a stroke at first then a

heart attack then I thought I was nuts and tried to ignore it. I hate to

complain .. I hate to take the meds for pain. Matter of fact I was in

such pain and the DR had me on just the oxy drops and he was yelling at

me for not taking enough. That was why after coming in the office for a

reg 2 week visit he found me in such a bad place cause i let it go to

long and couldn't get it under control fast enough to see him. So he put

me on the patches.

I have to say I like the idea that I don't have to got and ** take **

the meds all the time. Its just there and I know when it gets to a place

that I have to take a few drops. lol.. and I still don't use enough, but

it's the break through pain that gets me. I have control but its really

all done for me mostly. Now if they would stop leaking i would be OK..

these patches had a recall and I got hold of a bad batch and another 2

that were not recalled but did leak also. lol So i would be higher than

a Georgia pine all of a sudden ...

I know 2 ppl that died from these and yes i laugh. but its because i

have been on so many meds for so long it wasn't enough to kill me. And

well it was fun for the first time in a long long time I was giggly. One

friend asked me what I was doing? This was the first time before it was

known about the defects and I remember telling him I had no idea but it

sure was fun. No pain is a lot of fun.

Well, I'm sorry I knew this would be going long. Its going to storm here

in Chicago. I can feel it in my bones and I have to go. I own moderate a

lot of groups all health related. Some to talk and vent some to exchange

info on meds and we do fund raisers for our not for profit Org. working

on finding a cure for the HS we need medical research.

If anyone does go to the web site for HS please go look at the petition

read some of the entry's and sign it too. It really is heart breaking to

see some of these young ppl with the pain and misery they go through. I

know I'm not that old. But there are so many younger ppl out there that

haven't gotten a chance to do half the things I have ... like have a

child. Walk in the park pain free. .. well you all I'm sure know what

I'm talking about.

Thanks if you read this far lol... I promise I wont do this again

lol....

private email always welcome just please put **chronic pain** in the sub

line so i don't delete it Get lots of spam and I have to read mail I get

a lot of ppl in crisis looking for help.

qeenka@...

[Guest guest]

Hi ,

Welcome to the group. Yes, I did read the whole thing. Don't worry about

posting long ones. Sometimes we need to do it. This group has been a life

saver for me. Lots of information and compassionat people.

It's been my light when I'm in that dark dark place.

Kathleen in Calif

[Guest guest]

Hear, Hear Kathleen, I have found such compassion and kindness here. Not all,

but most. It's great to be able to spill you heart and have people understand.

Take care, donna

[Guest guest]

Welcome ,

Never worry about the legnth of a post! There are some of us out

here who appreciate reading posts. Makes us feel less isolated. I

wouldn't wish pain on anyone, but some days it sure helps to know that

you aren't alone. For that, I welcome and thank you.

Blessed be, Lori in California