Re: Re:Did you see an Immunologist?

July 9, 2012

Dear ,

I have a friend who received great help from:

1/ an Immunologist, who helped with detox, nutrition and supplements.

2/ Stress reduction, which it looks like you may be working on doing so if you

are trying to go in disability.

Good luck, Hope to see your posting soon with positive results.

o

--- El lun 9-jul-12, manfredini escribiÃ³:

De: manfredini

Asunto: Re: Re:Hello Fran

Para: " Stillsdisease " <Stillsdisease >

Fecha: lunes, 9 de julio de 2012, 4:21

Â

Hi , and everyone else. I have only posted once. Mainly because I've

been in out of the hospitals lately. I just got married a few weeks ago and

landed back in the hospital the day before the fourth of July. I had fainted and

right in front of my hubby and complained of migraines and had fevers and

feeling fatigued all day. I woke up to finding four paramedics in my home and

rushed to the E.R. Once there many tests were performed and once again they ran

the usual tests along with the cultures to test for any bacterias for a UTI

bladder inf etc..of course it came back for a bladder infection. As i've been

fighting these for over a year and a half now. I'm at the point where my

fatigue,constant lower back pain,joint pain,chills,spiking fevers,rashes,and

chronic migraines have me wondering if this truly is ADULT STILLS DISEASE and

not something else. I've been to every specialist out there. I've exhausted them

all. I've now started on a waiting

list

with the MAYO CLINIC and was told it would be six months. So now I am pretty

much a advocate for myself. I'm feeling all alone in this and don't know what to

think. I'm always in pain. Depressed and losing hope. I use to love my job and

looked forward to working and now I have hired a lawyer and looked into

collecting disability. I never thought this would be my life. It's frustrating.

I am looking to get a second a opinion from U.W. I feel the CIPRO they have put

me back on will not have any affect on me. The methotrioxate has helped with the

flare ups to some degree I must add. I free in some areas it has helped. Any

suggestions or ideas would be greatly appreciated. Thank you so kindly...Take

Care...

________________________________

To: Stills Disease <stillsdisease >

Sent: Friday, July 6, 2012 3:00 AM

Subject: RE: Re:Hello Fran

Â

Dear , I'm so sorry it has taken me a while to write you. Like Holly, my

heart hurt when I read about how alone you feel, and I think you are really

brave to talk about that here. Functioning every day just feels like an uphill

fight, doesn't it? It took me a long time to realise that part of my problem

with that was I was " fighting the fight, " if that makes sense? Punishing myself

when I can't do things, either by forcing myself to do them - and suffering even

more for it - or being angry / upset / depressed about them...feeling as though

I had failed. OK: here's the grandmother and eggs story - d'all use that

phrase??? " Teaching your Grandmother to suck eggs " ? One of the biggest things I

have learned from this family is about pacing and planning. And, I don't get it

right - I haven't got it right this past two weeks and landed myself in a big

mess (hence the delay in replying....). There is a good section on this on the

Stills Foundation

website, and it does take practise and diligence. Oh so easy to throw the plan

out of the window when you are having a " good " day, right? And then again,

somedays you will have the grand plan, and have it all mapped out but it goes

pear shaped. What am I trying to say here? A skeleton plan, whether that's by

day or by week, whatever you can manage, is something that works for me - and

remembering to give yourself a pat on the back is an important part of that. At

the same time, it is only skeleton and if it doesn't work out, it doesn't work

out and you have not failed. In fact, you have won by perhaps curtailing the

plan, or ditching something from it altogether, because you have recognised it's

too much and reigned yourself in. I wonder how other peoples' planning goes and

works out? My big lesson the last two weeks - I still cannot cope with

incorporating the unexpected. I think I can / thought I could, but I can't.

Furthermore, I need to be

firmer with others in saying " no, I can't do that. Thank you, that's a lovely

idea, but no. " It's not letting them down, it's not letting yourself down. You

are being kind to yourself. Which I suppose brings me on to other people and the

sense of isolation. Ach, , I just don't know what to say. It must be so

hard for friends and family who one minute see us being " ok " (I'm sure you have

the cover up down as well as the rest of us), and the next minute in a complete

mess. On the other side, I know I feel that one minute they are understanding

and I am overwhelmed by their kindesses, the next, I feel so hurt by an apparent

lack of understanding and I am screaming inside " why can't you see? Why do you

make me spell this out to you every, single time? " What is your situation,

? Do you live alone, or with family? What's the set up? I wonder if it

would be useful to hear from friends / family - their story? It would seem like

a timely

moment for that if there is anyone out there prepared to offer their

perspective or experiences. Hugs to you all - and you are not alone, .

I'm so sorry it took me a while to reply. Please do let us know how you are

going. Fran x

To: Stillsdisease

From: angela6_21@...

Date: Tue, 26 Jun 2012 02:34:34 +0000

Subject: Re:Hello Fran

Honestly Fran I don't know how I function day in and day out. At times when I am

surrounded by people I feel very much alone. No one around me understands what I

feel or go through except this group of people.

..

July 10, 2012

Hi o, Thank you, Truly! I see my specialist on Friday and I'll suggest

this to her. I never thought of seeing a Immunologist before. I've exhausted

just about seeing everyone else and so maybe this is the answer. Again I