What my neurologist said, and what my family didn't say

[Guest guest]

Boy do I hear you! When the tests on my granddaughter came back, I

let some members of my family know. The reactions were from " that's

nice " to " Well, if you tested most of the population, you would

probably find that most people have it. " I see symptoms in several

family members, but they won't even recognize it. It is frustrating

to try to deal with this without their help. Thank goodness for

this support group. Hang in there !

Hugs

Joanne

[Guest guest]

,

It seems ironic that those of us who are sick come to acceptance

sooner than our family members, but this is often true. Maybe

because the disease is so present tense, it is harder for us to

ignore. Everyone else, no matter how close, is at least one step

removed, which allows more wiggle room for denial. A way to shut out

reality if it is too threatening. We live right in the middle of it

every day, but others can choose their distance.

Emerson was right, " People only see what they are prepared to see. "

I think maybe the experience of illness gives us inside eyes to see

what is coming, so that we are more prepared, having the possibility

of adjusting sooner to the smaller spaces imposed, the limitations,

the losses.

But it's not easy. I still struggle to balance my need for someone

to lean on with my husband's need to come to terms with it in his

own time and his own way. Bless his heart, he is a quantum leap

closer to acceptance than he was 20 years ago, but he is still

somewhere behind me on the path and probably always will be. Mostly

I have accepted this too, and when he needs to lean on me (which is

not uncommon, especially during crises), I find others to lean on--

two wonderful doctors have willingly done this for me, one special

nurse, several close friends and my mother. Because I have others to

lean on, my husband can lean on me when he needs to. It is something

I can do for him—-he has to do so much for me physically now.

I wonder if you have considered asking your wonderful neuro about

genetic counseling for your family? A wise, genetic counselor can

sometimes provide the gentle nudges that will help start other

family members on their own path to acceptance. Meanwhile, know that

we all appreciate the warm, affirming person that you are. It is

distressing to know you are so distressed.

Take care,

Barbara

> Dear Listmates,

> On June 16, I saw my wonderful lady neuro in NYC. During the

visit, I

> asked her if it were possible for her to give me a prognosis. As

some of

> you may remember, I ended up in our local Pennsylvania hospital

last

> June with a migraine, unstoppable vomiting, and then extreme

> tachycardia.

> She told me that if, in last year, my endocrinologist, GI

> doc,cardiologist, and she had not worked together as a team, (and

it was

> she who put it together; however, I've had my endo in NYC now for

almost

> 30 years) that I would not still be here--that I would not have

survived

> the year. She says it is these mito " episodes " are what kill. I

think

> most of us would agree with her.

>

> Last week was a really terrible one for me. I have not been out of

the

> house for a week, and have lost 10 pounds. Severe back problems,

> headache, vomiting, etc.

> My liver tests are off, and now the kidney ones. And they can't

get the

> magnesium up.

>

> I had planned to go to Pittsburgh in August, but if it were this

week, I

> know I could not make the drive. My husband can't drive because of

his

> severe eyesight problems. (He had 20/20 early last year.)

>

> This neuro is a close professional friend of the pathologist at

Columbia

> who is in charge of the mito biopsys, and who read mine there in

1999.

> My neuro asked me in April if I would consider another biopsy,

since my

> problems have escalated so much since then. She has contacted the

> Columbia pathologist, and they went over all of my records again.

So, I

> have agreed to have another bx done in September, especially

because I

> have children, and now two new grandchildren. To my great chagrin,

> neither one of my daughters would tell her OB of my mito. In fact,

I was

> standing next to the bassinet of little Claire when a nurse came

in with

> some paperwork, and asked my daughter if there was any hereditary

> hearing loss in the family, and said, " No. " There I was,

wearing

> probably wearing the most powerful hearig aids made, and have been

told

> by more than one specialist that I will lose all of my hearing. I

was so

> upset and flabbergasted, and so was my neuro when

> I told her. My husband agrees with my daughters---why even worry

about

> all of this now?

> I am so very grateful that I can tell you all about this. It is

as if

> they are ashamed of me, or that all of this is my fault. No one in

the

> family will read anything about mito. Right now, I feel broken-

hearted,

> very much alone...

>

> But I know how lucky I am compared to those of you with your mito

> angels---mothers like . There are so many of you, I know, and

I send

> you my prayers.

> Profound thanks for letting me vent....

> I apologize to those I owe posts or private

> letters, but I know you understand---Lynne from the UK, ,

and

> others..

>

> I warmly welcome all of our new members. You have found some of

the most

> wonderful people in the world here..

> God Bless you all.

> Love,

>