Re: Re:Hello Fran/

July 11, 2012

Hi,

Yes I have a suggestion for you. It might do you well to have them check your

adrenal glands to make sure they are funcitoning well enough in a crisis. When

the body gets an infection or calls on extra cortisol, there has to be enough in

your adrenal reserves to cover the extra need for energy to fight what ever in a

lot of cases bladder infecitons that are not obvious yet.

Â

Your symptoms sound a lot like adrenal insufficiency. Were you using

corticosteroids in your life at any time or usng them now?

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Let us know how you are doing ok?

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>To: " Stillsdisease " <Stillsdisease >

>Sent: Monday, July 9, 2012 12:21 AM

>Subject: Re: Re:Hello Fran

>

>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...

>

>________________________________

>From: Francesca Fair <mailto:francescafair%40hotmail.co.uk>

>To: Stills Disease <mailto:stillsdisease%40yahoogroups.com>

>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: mailto:Stillsdisease%40yahoogroups.com

>From: mailto:angela6_21%40hotmail.com

>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 14, 2012

Hi , So sorry for getting back to you late. I haven't been feeling well.

Still having such pain with the bladder infection and the fatigue is horrible! I

can't stand it. It makes every day life a struggle. Just for me to get ready to

go to my Rhem this morning took me over two hours. To answer your questions,hun,

I've been on cortisone injections before and prednisone and now methotrioxate

for the stills. Yet when I went to see my specialist today I still complained of

the constant pain and burning I was having,lower right back pain and sharp pain

in the pelvic area. She agreed to have me stop taking the Methotrioxate, seeing

as I have an infection.Or do I? She said the culture came back negative...so why

am I on Cipro then? And not to mention for the tenth billion time. No one seems

to have answers. The Urologist in Madison actually said that this was all

related to my stills yet my Rhem specialist didn't agree. So now I have a appt

for a

Immunologist but can't get in until Oct 3rd. I'm also on a waiting list for

MAYO for up to six months. I don't have the best insurance. (sigh) I've never

had my adrenal glands checked. I know back in 09 I had to have a biopsy on my

Thyroid Nodules. It came back fine. I really appreciate the advice and

suggestions you've made and will look further into this. THANK YOU SO

MUCH!!!!!!!! My point is I don't know why all these doctors continue to push

these antibiotics on me when they just don't work. I've become so depressed this

past year or so and losing hope in the medical system. I'm even thinking that

since I'm gonna be going to UW in Madison to just start all over and get second

opinions maybe even third. Can't hurt. Again, thanks so kindly. Truly,

________________________________

To: " Stillsdisease " <Stillsdisease >

Sent: Wednesday, July 11, 2012 1:56 AM

Subject: Re: Re:Hello Fran/