From undiagnosed to climbing Mt. Everest!

[Cindy]

Elephant, I hope that you have eye doctors that know about WG! If you are near or can get to Jules Stein Eye Institute at UCLA you should try! The doctors are listed on my blog. Seriously, I was so close to being blind and they stopped it (for now anyway), but I can never go off my meds because I will loose what vision I have left. Good luck and be aggressive with your treatment. After all, it is your life - you deside what is best for YOU!

[elephant]

I went to see Dr Carol Langford at cleveland clinic and she ordered the CT scan. So once I get that done tomorrow my Rheumy will send the pics to her so she can look at them. I had so many CT scans of my head/sinus in the last 2 years and I actually brought one of them for her to see , but it wasn't a good pic of my orbitals. I usually stay on top of things. I will be taking immunosupressant drugs for the rest of my life because of my kidney transplant (1989). Perfect match my brother gave me his kidney. Thanks for the advice. If it get's worse I will look into UCLA. I live in South Carolina.

[Cindy]

I went to the doctor yesterday and found out I have to have an dyophangial study (having problems shallowing my pills). Trying to schedule that now before I leave for Mt. Hood to do some specialized rappel training for several days. It is difficult to manage life, family, work, training, and the medical stuff: a bit little putting a puzzle together!

[elephant]

Cindy,I sometimes have trouble swallowing ( dysphagia) but it is controlled when I take my Nexium. Sometimes I rebel and decide I'm not taking my Nexium this week. Only person I'm hurting is myself. The medicines we take can cause esophagitis( inflammation of the esophagus). Good luck on your test!

[Cindy]

Elephant,
Thanks for the info
I completely understand about the "Pill Rebel"
Sometimes the pills are just overwhelming! And when I am training on these big mountains it is very difficult to stay on schedule. I mean I just cannot stop climbing, pull off my gloves, look at my watch, try to find the pills, taken them - all before my hands get frost bite: but I always love a challenge So, I climb on toward Mt. Everest.

[Cindy]

It just occurred to me that maybe this was all meant to happen to me. The timing of it all goes: I decide to climb Mt. Everest, I have a flare (loose vision in one eye) which leads to me getting diagnosed with WG, I go through the process of tests and treatment, and I am now stable and strong enough to attempt climbing Mt. Everest. Now, I am in the process of getting California to recognize Rare Disease Day and raise funding for the Vasculitis Foundation during my climb (it is an Event posted of their website). Maybe I was allowed this chance to bring WG and other rare diseases to Federal attention so that some legislation can be change/made to help us with our special needs (i.e., research, medications, insurance issues, earlier diagnoses). Just thinking . . . .

[Doug]

I can't think of a more dramatic way to do this! It shows that even a rare disease that one has for life needn't be the end of a life full of activities meaningful to a weggie.

[jola57]

Cindy, thinking's good, getting governments and people to recognize obscure diseases by climbing Mt. Everest is supreme. My hubby did it in the 90's, it was not as comercialised as today

[Doug]

Cindy, thinking's good, getting governments and people to recognize obscure diseases by climbing Mt. Everest is supreme. My hubby did it in the 90's, it was not as comercialised as today

(But did he get to hold a panda cub? There- I went off topic a bit so you don't worry I've lost that ability! P.S. My cat can beat his panda, too!)

[Cindy]

jola57,

That is cool! Why do not you and your hubby join the WG Trek to Base Camp. Some info on another tread called training for Everest. The more that go - the bigger the message.