Re: I am new HELLO

[Guest guest]

Dear Sharon,

I'm so sorry about the recent loss of your father. My mother passed away on December 5, and I miss her so very much. My dad died in 1994. If you were a Daddy's girl like I was, the loss is heartbreaking. This can cause a lot of stress and seems to make these autoimmune diseases worsen, so I hope you'll seek some help through family or friends as you work through all that life has thrown at you recently. This group of wonderful people has strong shoulders, great ears and the kindest hearts if you need to unload your burdens - day or night.

My name is . I live in Kansas City, I'm 53, married to the world's greatest man, have 3 grown children, and 3 adorable granddaughters who are the lights of my life. Oh, and I also have RP and Wegener's Granulomatosis. My symptoms began in September 2000, and I was diagnosed in March 2001. And, after a full year on meds, I'm doing pretty good except for a day of fatigue here and there.

I think we were all very afraid when we learned of our diagnosis. Then we rushed to the internet to see what the medical world had to say. It wasn't pretty! But I'd encourage you to face your fear and arm yourself with good doctors and all the knowledge you can to fight back. If you don't feel confident that you can reach your doctor the minute something starts flaring or you become ill, fire that doctor and get a new one. Seems like little things can go from bad to worse really fast with these diseases. I've learned that the hard way!

By the way, I've read emails from 4 or 5 group members who take colchicine which I believe is a chemotherapy drug for certain types of cancer as well as gout. Must be a good immunosuppressant. I take Cytoxan, Bactrim and Prednisone (the drug we love to hate!). But it's working.

Take care of yourself and keep asking questions and learning all you can. Life can get better.

(KC)

----- Original Message -----From: Lee27a@...Date: Wed, 20 Mar 2002 12:09:07 ESTTo: Rpolychondritis Subject: I am newContent-Type: text/html; charset=US-ASCIIMy name is Sharon and I have just been dx with Rpolychondritis 3 days ago. I am in a lot of pain in my left ear. I also have Sjogren's Syndrome, Fibromyalgia, Raynauds--the list goes on. Today my ear is a lot more painful. I am afraid. The doctor put me on some gout medication which I haven't taken yet. I went to ER on Sat. and that doc said I had (after giving him my opinion) bacterial dermatitis. I saw the ENT doc on Mon morning and he dx me and said I had to see my Rheumy. I saw him on the same morning and told me to continue to take the Augmentin that the ER doc prescribed for me and then to start on the gout meds. Why gout meds? Do a lot of you have this much pain? I just had surgery on March 11th for an endometrial ablation and that seemed to aggravate the situation. I remember the first time I woke up with my left ear all swollen and hot and painful--I thought I had an infection from an earring since I am so sensitive to certain types of earrings. Silly me, it couldn't be that simple:( Also I just lost my dad who went through a terrible death on the 1st of Jan. and lost my mom 13 months before to cancer. I don't know how much this new disease is caused from being a nervous wreck because I am and I don't know how much is caused from--being the disease. I thought the Sjogrens and the other autoimmune diseases were a lot to deal with, and they are--I Iive at doctor's offices. Please, can you share some of your information with me--how you were dx, what meds help, how bad this can get etc etc. I am really, really having a hard time right now. Thank You, Sharon DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU