Posted 6/30/2009 12:15 PM (GMT -6)
Desiree--
I know what you mean. If you were nearby, we could sit inmy comfy recliners and watch movies and play cards or something. I have thick wood blinds on my windows with curtains over them. I can no longer watch the birds at the feeder. I had a recent pet scan for lymphoma and some placeslit up and they wont even biopsy them to see if there is anything wrong. I feel like they are just letting me go. I read about all the better care and treatment other people have gotten in different areas of the country, it makes me want to move. But Ilove where I live.
I also have liver disease which is untreatable and they never know what or when I will go into liver failure. So now I swing between paranoid and scared to just not caring anymore. But I do care. I want so much for people to have the best treatment regardless of their insurance. Just because we are medicare, I feel that docs don't do anything becaue they don't get paid enough. Actually, I know its true.
I really do understand and I am praying for you. I was told I had a year to live and that was 17years ago, then they said they couldn't guarantee me more than 20 years. When I asked my GI how long I had, he said that people withmy condition just plug along sometimes for a long time. My dad is thirty years in now. I am 17 years in.
I have vitiligo that is disfiguring and embarassing. People would come up and say "you have michael jackson's disase" docs and others think I have AIDS because its common with AIDs, some people dont want me near them and I feel they don't want me to swim in their pool, thinkingI have some nasty skin fungus.
Mine is so patchy that makeup and tanners and dyes just make it look worse. So I cover it upbest I can.
I'm sure you wear shades when you can for your eyes, there are some tinted shades that don't actually impair yourvision. I don't know if these are an option.
I don't know about your tumor, what kind it is because I've been gone alot did they mention any types of treatments at all? Sometimes you have to really search and travel to find the right doc. Some docs feel its not worth putting a patiet through alot for a small chance of success but don't let the patient make the choice, other centers pride themselves on being able to treat the untreatable.
Seeing a bioidentical hormone doc helped me get rid of extra estrogen which feeds tumors and put me on a low estrogen diet after testing of course and some special hormones to help me excrete and convert the bad estrogens. They are usually very compassionate, will test things like hormone and vitamin levels that normal docs won't, and may be able to hook you up with some docs that are willing to go beyond the extra mile to help you. I hate to say this but my most discompassionate and incompetent docs have been male.
I am so so sorry this is happening and I know the feeling of being "let go" like the docs say why bother. All I can sayis that you have to go by how you feel. Fight and see new docs if need be, my GI told me I was dying, I saw two other specialists who explained what was going on with me, one put me on experimental treatment that seems to be helping and I may just stay in the state I'm in until old age or somethingelse gets me. On anything serious, especially if they say nothing can be done, I would get a second opinion from a place like Mayo or Cleveland Clinic or a University Medical Center, where theymay have additional treatments to offer.
On the days I don't feel like it, I let myself just do whatever. Sometimes I need to cry,to worry, to make plans, or to escape and forget. Sometimes I need to leave and visit relatives and let them baby me and make me forget about things.
Just know I'll always chat with you, I can talk about nothing, and talk alot if you haven't noticed.; ) I will pray for you. And don't let anyone tell you what to do regarding seeking treatment, taking a treatment or not, do what feels right for you.
Healing can come in a lot of unexpected ways. I hope that somehow there is something they can do beyond this palliative care. BTW, I have positive P-ANCA but docs haven't diagnosed me with P-ANCA vasculitis and keep checking me for Wegeners.