Re: Welynda-(kinda long) ((((((HUGS))))))

[Guest guest]

Welynda-

HI!!!! I am not sure if I have formally introduced myself, my name is Keri and I

have been a member of this site for gosh going on 7 years now. I have had this

scum sucking disease for over 7 years and I have been where you are. Please know

that we are your family and we care about you very much. This disease sucks big

time sometimes more then others. And right now I know that you are just fed up

and I can see where you can see that ending it all would be so much easier. But

then you would be letting the dragon win and you can't let him win. He is not

worth, you are a very important to this group and to your family and friends.

I know that  you don't want to hear this but you need to get yourself into the

doctor and tell him/her what you are feeling. If you are in more pain then usual

then your pain meds may need to be bumped up, maybe you need to increase your

dosage on your anti-depressant or change to a different one. You need to get an

appointment with your doctor ASAP. Please promise you will go.

Have you thought about counseling? It isn't for everyone but it helped me. Just

to have someone to talk to and tell EVERYTHING to. You can yell, cry, get pissed

off and it is weird when you leave there you feel a huge weight has been lifted

off your shoulders. Like I said I know it isn't for everyone but think about it

Also something that I have done ever since I was diagnosed with Stills is write

in a journal. I can't tell you how much this has helped me. Sometimes just to

get out, kinda like sometimes you just need a good cry, you feel better. I go

back and read some of my old journals and I can see how far I have come. How

much worse off I was 6 years ago to now.

Just to give you the short(very) short version of what I went through, I was

diagnosed 1 year (almost to the day) after I was married and my son was just 6

months old. I almost died (seriously) I was in ICU for 7 weeks in a medication

induced coma. I had fevers as high as 107.9 (with no seizures, someone was

looking out for me), all of my organs failed at one time or another, I was

trached (so I wasn't able to talk), I was on every medication known to man (it

seemed). When I finally was diagnosed and released to go home before I

went home, I had to go into a rehabilitation hospital because they said I still

needed to be monitored by nurses. I was in a wheelchair for over a year, I had

to re-learn how to walk again, it was like I never had walked before. (Oh I

don't think I told you how old I was, 26.....twenty-six years old). I was one

pissed off 26 year old let me tell you. My husband didn't know what he signed up

for when he married me, my baby boy

was 9 months old when I finally got home. When he cried and wanted his mommy he

had to be brought to me. I was to weak to hold him without help. The only time I

could hold him was if he was asleep, because he wouldn't try to get down. My

husband slept on the couch next to my hospital bed that was in our living room.

My parents had to be there around the clock to take care of me and my son when

my husband went to work. After that first year of hell, I moved on to the next

level of hell. My husband couldn't handle it anymore so he left. (bye) I was so

scared that he would take my baby from me. Now my parents had to move in with me

and my son. (NOT FUN). I just wanted to be a normal 27 year old women. (whatever

that meant) but every year got better and better. Now I am on year 7, and 33

years old. No more cane, I finally found the drug cocktail that works for me. My

husband didn't leave for that long. He found out that he needed me more then I

need him

(LOL, just kidding) My son is 7 years old now and a handful. I, like you, find

a way to be positive for my friends and family but when it comes down to me, it

is a different story. (blah, blah, blah........)

Anyway I just wanted you to know that I REALLY do know where you are coming

from. This e-mail isn't about my pain and suffering it is about you. And you are

strong and you will make it through this, I know you will. You will look back at

this time in your life and say I made it and look at me now.

Okay well this got way to long. If you need to talk off line you can e-mail me

directly at kcbread3@.... I, too, have a couple of days during the week

that I can't sleep. So when you can't sleep e-mail me and we can chat. My Yahoo

instant messenger id is Kcbread3.

You aren't alone we all know what you are going through and we are here for you.

Don't ever hesitate if you need to vent, that is what this support group is for,

we are you second family (for life). You are loved by so many and the world

wouldn't be the same without you in it. Keep in touch and get into your doctor,

please.... You will be in my thoughts and prayers!!!!!!!!!!!!!!!

 Love and Support,

Keri in CA

Depresion

I hate to come on this site and be so " bummed Out " but I am. I get so depressed.

I've been diagnosed now for 5 1/2 years. My Stills has definitely improved but

it's still raging. And, financially it has been devastating. I can't just talk

with my friends all the time, they must get tired of hearing it. You guys are

the ones who truly understand the depth of this illness and the pain.