Cyndi

[andrew]

**Cyndi's Story - relocated from original site by Andrew**

I have a very long history with WG, but will keep this as short as possible.

I have had WG for at least 25 years and possibly longer - my symptoms go back to early childhood. I have been very very sick with this disease. I have been at the point that I thought I needed to tell my 4 kids and husband good-bye. I have had to go to the ER so many times in a short period of time. I have been hospitalized numerous times and airlifted twice. I have almost died several times.

But I am doing very well now. I am living a pretty normal life - please keep the faith - never give up - keep fighting for the right meds and knowledgeable docs. If you can't find a good knowledgeable doc, then find a good doc who will consult with one of the VF consultants and carry out the recommendations of that doc. You can and will get better with the right docs & meds (& anti- inflammatory / anti-vascultis / anti AI regimen) You can live a good quality life again.

In 04 I could not walk across the room without having to recover and catch my breath. Then I had to work up to being able to walk to the mail box. In & out of the ER & hospital. Complete respiratory arrest a couple times that year. I was on bottled oxygen and I was 40 years old. At death's door at least twice that year. I almost lost my lung - it collapsed and was down for over a year. I had severe SS, tracheal collapse (resulting in full respiratory arrest - requiring intubation, numerous times), sinus involvement, saddlenose, hearing loss, eye involvement, etc etc etc. And this was not my first flare - I had a history of these flares every couple years since 1981. In 81, when I was 17, I hemorrhaged from my lungs so badly that I nearly drown in my own blood as it bubbled out of me and I was too weak to move - I was in a beanbag chair and the blood filled up the chair and covered my face. No dx.

In 04 I kept fighting for knowledgeable docs and fighting for dx & tx. Finally I got both and things started improving right away! A few months later I was still getting better but had some new symptoms and I researched anti-inflammatory foods & supplements and started a regimen and the new stuff went away and I went into remission! Still on the prescribed tx, as well. My lung re-inflated! I am no longer constantly SOB. I can walk a lot. I just spent Tuesday at 6 Flags keeping up with 5 active boys - 4 were teenagers! I am very active and the disease does not give me much trouble anymore. There are a few little symptoms and damage I live with but they are more annoying than life altering. I am able to live a good quality life. I travel, go white water rafting, light hiking, camping, boating, etc. So know it can happen for you too with the right docs & meds & regimen.

Keep the faith & keep fighting for the right tx cocktail. And rest. You need lots of rest and sleep and naps when you are flaring - your immune system heals when you sleep and rest. Even when you are in remission, you need to get lots of sleep and rest in an effort to stay in remission. But during a flare, you need A LOT of sleep and rest.

On your good days, do something enjoyable - but take it easy at the same time - I didn't go hiking on my good days befoe remission - you have to take it slow and easy and work up to the more demanding tasks. Just go to a movie or go on a picnic or something enjoyable yet low-key. On your bad days, read a good book or watch movies, TV, etc and take naps.

Count your blessings - but FIGHT for good docs and the right tx. Keep the faith that you will get better. If I can of any help, you can contact me thru: http://health.groups.yahoo.com/group/wgdiscussion/

Hugs & prayers for improved health for all,

Cyndi Ca ~