Re: A stranger (not really) in your midst {{Jan}}

May 11, 2005

Jan, thanks SO much for your update, and exciting news about your

job! I raised three girl scouts so I know you are having fun with the

boy scouts. I have been wondering how you are doing, and I am so glad

you got to put a name to what is going on with your respiratory

system. I don't know if I have ever told you how much I appreciate

all the wonderful positive things that you bring to this group.

It is so cool that you are working in such a neat place! I just know

that God has some great stuff in store for you.

I know we are all concerned about our sweet girl Tawny, and are

agreeing in prayer for her. I am sure she is just busy and maybe a

little delay arose in moving to her new residence.

have a blessed week and thanks for the post- i feel like we've sat

down and had a cup of coffee together.

Hugs from

Jane

> Good Morning, my RA family.

> It has been awhile since I posted, however, I do read the mail

every day so I do my best to keep up with you all.

> To bring you up to date just a little...I have rejoined the working

world and loving it. It is only a minimum of 3 hours a

day...sometimes a little more but it has made the difference for me

in my every day attitude. I am an assistant to a lady that owns one

of the largest insurance agencies here in AZ specializing in high

risk insurance. Her business is run from her tri-level home where

one level is devoted entirely to her business. The dress is casual

and she does not demand that I jump immediately from task to

task...she allows me the pace I need to do my work....kinda the

attitude that she knows it will be done before I leave. I did not

even tell her about the FMS and other ailments until the 3rd week and

then only the FMS. She is extremely knowledgeable about many health

matters, however, in the field of auto-immune diseases...she still

needs to learn more as her knowledge is strictly from the

insurance/text book view. I don't contradict her with her statements

about

> these things, but hope somewhere along the line, she might be

enlightened. She is a wonderful person to work for though. In the

meantime, I find the routine and responsibility of going to work

every day has been extremely helpful in fighting the urges to give in

to this beastie. The work is much like I used to do when I was

office manager for a Blue Cross captive agent office only without the

responsibilities. Besides, this gets me out of the house everyday,

meeting and talking to people other than my 10 (soon to be 11) year

old grandson and into an adult world.

> I have become involved with the world of scouting also...taking

training and an active part in 's scouts. He just crossed

over from Cubs to the Boy Scouts and is doing wonderful. I am so

proud of him....in just six months since we became involved in the

Scouts...he earned the majority of his belt loops, a considerable

number of badges and patches plus his Arrow of Light. If any of you

have any knowledge of Scouts...you know that is not an easy feat. I

was involved in Girl Scouting for over 12 years and this is new to

me. They are willing to take me, FMS and all even though I can no

longer go camping or on the outdoor activities and seems to

enjoy me being a part of it.

> As for my wonderful Internist here with the Air Force...the

military had other plans for him and he is now transfered to San

.....but because of the interest he showed in me since last

August, I now have a name for something that has been bothering me

for years and other doctors just dismissed as being a whiny, old

lady. He did not want my medical records from the other Dr's and

their findings and set out to find answers on his own....and I have

had just about every test conceivable (I know there are others) and

been to many specialists, had a sleep study (the 2nd in 5 years),

extensive pulmonary testing and a cat scan. I now have a new,

working properly, C-PAP with a nose mask that I am not allergic to

and as a result of the CAT Scan, know more about myself and being

treated for a condition I never even heard of

before....Bronchiotactasis which in a nutshell is an enlargement and

scarring of the bronchial tubes. They are always swollen and filled

with matter that can and

> frequently causes pain in my chest. That same pain that used to

take me to the ER (until I gave up) to be told there was nothing

wrong with me. A cursory chest exam and/or ex-rays would produce

nothing and I would be dismissed. At the worst, I would end up with

frequent pneumonia, bronchial asthma, and bronchitis but no one had a

clue or seemed to even care why and the label of C.O.P.D. was given

me for a catch all. The Pulmonologist I was sent to was not happy

with that dx, especially since I have never smoked a day in my life

and ran many tests including the CAT Scan. Since his dx, he has

taken me off of all the numerous inhalers I was on except for Advair

and gave me a new one...Spiriva and it has made the world of

difference...I have more stamina since I am not always fighting for

breath. Hopefully, being able to walk or exercise will follow before

long. He has also ordered a vest device for me that in wearing for a

few minutes a couple times a day will relieve the

> constant congestion...he says removal needs to be daily....much

like a person with CF. And as for the replacement of my Internist,

so far it is a very good woman Internist that I had seen a few times

when my Dr wasn't there and she is aware about FMS and other related

things and is very nice to deal with. My only fly in the ointment is

that on October 1st, I lose my base medical privileges as I turn 65

on the 10th and Luke AFB doesn't handle the over 65 patients...so the

hunt will be on again. Fortunately, all the specialists are off base

so that is a start in the civilian community. As for the uvietis

that has been plaguing me since Christmas, it is still ongoing and

the eye specialist(on base) keeps saying...it could be associated

with RA or another auto-immune and says he will start looking more in

that direction but hasn't yet. And some Dr's especially the

military, you just can not prod to go any faster.

> I want to add my concern for Tawny also, I usually hear from her on

occasion but this is the longest she has ever gone without

contact...so please add me to the list with Sue, Jane, and Tracie and

the others.

> Jane..put me on that list for spare husbands also..at least a nice

companion...I'm ready along with Kathy in IL.

> Tess...as usual..you never cease to amaze me...you are such a role

model to me. Keep it up, the world has yet to hear the name of

Tess...

> ....my ankles are constantly swollen now also...used to

pride myself (what's that...pride goeth before a fall?) on the fact

that my wrists and ankles were so small and could belie the rest of

me (I know, I know...false security), however now the ankles are huge

and extremely painful...I am on lasix and one of the last things my

Internist did before leaving was to give me a referral back to the

cardio Dr who I will see tomorrow.

> Has anyone heard anything of Carol in FL? She has not posted in

the group that I can tell since the hurricanes and any email to her

comes back with the same auto-message that because of the hurricane

there was damage, etc and she would get back to the emailer. I do

worry about her and would just like some assurance she is OK.

> Ken...I love your posts and jokes...you keep me laughing and that

is so important with this beastie breathing down our backs. The

SMILES are our best defense against anything life hands us.

> and a....as always...your devotion to us is not

unnoticed. I appreciate every minute you put into what you do for us

and know it only shows your compassion and love for us.

> Well, I've done it again...an epistle...see why I don't post as

often as the rest of you? I get carried away. Take care all and

know you are all in my thoughts.

> Love and Prayers, Always...Jan =^..^=

>

> ~ " If I could reach up and hold a star for every time you've made

me smile, the entire evening sky would be in the palm of my hand. " ~

>

May 11, 2005