Update on Cath

October 6, 2001

Hi :

Thanks so much for your post. Am considering everyday one to celebrate

as best I can, but as we all know things get tough.

Ironically I was in the ER a week ago last friday night until 3:00am

trying to get CT scan to take to neurophthalmolosit. Had to do the

Hospice volunteer program starting at 9:00 am next day and barely made

it through that but God saw me through. The woman had a blast and looked

so beautiful. They all said how good they felt about themselves and it

was an honor to work with these brave survivors. Have had a hard week

with most recent medical troubles and dealing with emotional

rollercoaster on Pred but I know God will get me through it.

Has anyone in the group had myocyitis? It is an inflammation of the

tissues around the orbit of the eye. Well lucky me, I am now the

reciepent of that also. I had noticed my right eye starting to protrude

a little for the past week or so, and watched carefully, but suddently

it really bugged out. Well needless to say working for an

ophthalmologist we acted immediately and had bloodwork done (7 tubes!)

and then CT of the brain. I researched this and since it is an

inflammation, guess what I started again. Pred. I got to the

neurophthalmologist on wed and no tumors seen or inflammation of the

muscles holding the eyes so it must be miocyitis. I am to continue the

pred for a month or so and thankfully the pred brought my eye back to a

more normal size so I don't look like a freak. Still looks larger than

the left, but wouldn't stare at me now. Ironically since May when my

left upper eyelid started to droop with that horrible headache, the doc

is more worried about Myasthenia Gravis now. Am waiting on lab results

from that.

For the members, I have had RP officially since 3/99. I try to post as

much as possible but is hard due to such a hectic lifestyle. I have

been very fortunate to have missed alot of the respiratory problems with

RP and permanent damage, but have vasculitis with it and that seems to

be attacking my central nervous system. For the most part I use Pred

only when flares occur and it reverses it pretty quick. Am on other

meds and for the most part do pretty well, but stress sure does set me

back.

I was blessed to work for a doc who picked up on things early and was

diagnosed at an extremely early stage of RP. If you look at my regular

labs, I look very healthy, but ANA is still coming back 1:1280 and 1:80

is borderline to high. My Sed rate is usually normal but climbs during

stress.

Has anyone ever heard of Anti-myeloperoxidase (MPO) AB test? Mine is

now coming in high as well as my Anticardiolipin Ab, IgM, Qn. Guess

that is why this disease is such a buggar. Can't classify it or specify

what it may be linked to and is different with each person.

They think I have some rare connnective tissue disease also but can't

define. I am reviewing Neurophthalmology books right now trying to get

any clues and will let everyone know what I find. My thyroid came back

fine so my eye bugging out is not from that.

Well enough about my boring info, just wanted to know if anyone else has

had problems with this. I must say God came through again for me with

all my recent visits. They changed my Cobra insurance 10/1/01 and I had

a $500.00 copay on specialists even in the network. It was either that

or go to a direct HMO and goodness knows this disease takes many courses

and that having access to different docs is important so I went with the

PPO since I will be on regular insurance as of 12/1/01. Well God came

through and the neuropthalmologist knew me through Grand rounds at All

children's Hospital and no charged the whole visit. I was in total

shock that he would do that for me. I had tear in my eyes of thanks

since money is so tight right now. God's grace is really never far

away.

I am having a time right now with some depression from the pred, but am

leaning on God to help me through. Caitlin is growing so big and a

little harder to keep in line since her dad doesn't have rules, but am

working on that also and asking God for words of wisdom. We are going

to put up Halloween decorations today which should be lots of fun ( if I

don't cry on the pred)!

Thanks again to all of you terrific people who have such love and warmth

in your hearts. Just knowing I have wonderful people like yourselves to

call upon for strength, support or just to listen makes such a big

difference. I don't know how I could deal with all of this if it were

not for all of you!

To those who know me when I post more regularly, Mom and Dad send a

great big hello. They also are so glad to know that you all care and

are there for me. God truly blessed me with both an internet and

traditional family.

By best to you all and I'm sending a big hug to each of you,

Love ya,

Cath and Caitlin

Cathy,

Have I told you lately what a wonderful and caring person you are?

We are really blessed to have you as a member. Such inspiration you

bring to all of us.

Thank you so much for your posts. No matter how bad your circumstances

are, you always have a good thing to say.

God bless you!!

W

October 6, 2001