Re: todays visit with the retinal specialist

[Guest guest]

Hello- boy can I ever relate to you! My family just does not get the fact that I have a brain tumor! They are in such denial...they can not deal with it...so they frequently tell me that there is nothing wrong and I will be fine and many other similar sorts of things. That is why I joined a support group...I could not get it from my family. It is as if, because it is so rare that no one can put a name on it, it does not exist. Many days I wish that I had some brain tumor/cancer that had a name...maybe that would help! I am so glad that you wrote to the group! Vent here all you like! Believe me, many of us understand! You are in my thoughts and prayers. Deborahtamimulder <tamimulder@...> wrote: Today I had my visit with the retinal specialist from the U of Wi for my Retinal Vasculitis. Remember, I'm being treated with steroid injections in my eyes and eye drops for the increased pressure in my eyes. My right eye has gotten just a little better, but only because we caught it sooner than the other eye. It is still a big concern and vision slightly "off" in it. My first affected eye isn't any WORSE this visit, tho it isn't any better either. Vision still very "off" in that eye. Dr. said "I would suspect that you have vasculitis in others areas as well" and "I strongly suggest you see a rhuematologist" and they got me an appointment with one for July 18th. Earliest I could get in. I'm to see my retinal specialist in one

month again.He also beleives that the burning, cracking and bleeding around my mouth (and now inside my nose!) is related to my RV AS WELL AS my Ulcerative Colitis. Also, besides the area around my lips cracking and bleeding (NOT my lips, but around them), my finger tips and the "cracks" at the first digit on the fingers are starting to get deep cracks in the skin that burn. Tho they don't bleed yet.I have yet to feel ill. But I do get tired more easily these last few weeks. With all the work I do to keep the yard up on the farm with my husband gone driving truck, I just can't keep up with my full time job at a hog farm, the yard work AND my house work! Heck, I haven't even sheared my sheep yet (and I hear about THAT every weekend that DR comes home!)I guess what makes me angry is the fact that NOBODY seems to understand (family and friends, not Drs.) My mom and step father, along with my

husband, don't understand WHY I don't want to go to work full time AND start nursing school (besides my illness AND the fact that my vision is impaired, I'm also 47 years old, and a very petite woman of 5'1" and 120 pounds.) My MIL thinks a pair of cheap magnifying glasses will "fix" me. I already wear glasses and I can't make her understand that glasses won't "fix" my problem, grrr! Why is it that if your aren't running a fever and vomiting, then you must be fine!I now want to sell the farm. I just can't keep it up any longer and the medical bills are making it harder and harder to make the mortgage payments. We have enough equity in it (and there is a BIG demand for farmettes as we are about 100 miles from Chicago!) to get a good deal of $$ and pay cash for a nice house somewhere. That would ease my burden and stress SO much!Please tell me I'm not alone here. You'd think at the very least, my husband

would understand as he is a 20 year cancer survivor!Thanks for letting me vent!Tami in northern IL