to all members

[Guest guest]

if you could help me in this matter I would appreciate it greatly. I

had just returned from a doc. visit. He and I discussed the findings

of this biopsy. He is having more test done. But it is determined

that I have Mito. He feels Melas syndrome. Doc and I have been

through thick and thin and I trust him very much. Well his advice and

his knowledge in this disease, informed me that I am to do nothing.

Because of the shape I am in. He said it is bad. It just took along

time to diagnose, while I deteriated. Now I was told to do absolutely

nothing but to use a wheel chair instead of walking or he would order

me a scooter, which ever I prefer. But not to walk hardly at all. My

energy level is critical. My blood test results showed a very high

Lactic acid and CPK levels were off the chart by alot. My breathing

has been a number one problem which we are dealing with. But upon

finding this all out, I left his office feeling nothing. Here's the

problem, My sister and I are together, living in same house. Her

upstairs and me downstairs. We had buried both our parents at a very

young age. Both our parents required alot of medical help. They both

needed to be taken care of by us, cause their were of young age and

couldn't receive medicare, etc. Since they were both young we didn't

want to put them in a nursing home, and we felt we could do it.

Sister would take the days, and I would take the nights. Well, we did

our good deed. After our parents were gone. We swore we would never

do it again for anyone, because of the way it affected us health and

mentally. Well, here I am needing to be taken care of in some things.

My husband has been through this with us and done his share. I can't

ask them to take care of me now. It is very hard to accept. I didn't

want to be a burden like my mother and father were. Plus now my

sister and I have health problems, My husband had a major heart

attack two years ago, works 6 days a week, and my sister now has a

family of her own, and her own marital and medical problems. How did

you people stay from getting depressed and dealing with the fact of

this disease. I have become very emotional and depressed. Any

suggestions as to how to deal with this would be greatly appreciated.

Joing some of these mito groups have helped. I feel I have someone to

talk to, since I don't want to of feel I can talk to my family,

because of what we had already gone through.