Re: Laurie-- Having a setback...late night posts r never good.. [g]

[Guest guest]

Adam

If you have mito and the defect is in the nuclear DNA it can be passed in

many ways and can skip many generations. Mito can start in a family due to

someone having the defect caused by errors in the embryo. Everyone has some

that form, but most don't cause any problem. Mito can also be caused by

toxins, but then this isn't passed on.

My mother was diagnosed in her late 60s, unlike and I who were

symptomatic much earlier. She was just born with fewer " bad " mito. My

grandmother (maternal side) who most likely had it as my mother did as well

as some of her siblings (not officially diagnosed) could run circles around

me when she was in her 70s and I was in my 30s. She did have the

cardiomyopathy which was just a different presentation. The location of the

" bad " mito make a really big difference in our symptoms.

laurie

>

> Reply-To:

> Date: Fri, 24 Sep 2004 13:24:29 -0000

> To:

> Subject: Laurie-- Having a setback...late night posts r never good..

> [g]

>

>

>

> Hi Laurie,

>

>

> Thank you for understanding. :-)

> I agree, it is an up and down existence that is very much effected by

> how you are doing physically. When I am well enough to do the

> minimum, eat some, sleep even 5 hrs a night, watch some TV, be able

> to walk out into the yard a couple of times a day, use the computer,

> then I can handle things. It is a very limited existence just at

> that level. The things you AREN'T able to do are tremendous, but you

> can get by and exist, like in a prison though. But once you dip

> below that level and it starts to look like it is more than just a

> dip, it becomes very very hard to tolerate. I don't sleep all day

> when I get sick like some who have mito. That would be somewhat of a

> relief, since you can't do anything.

>

> Not being able to eat is like the last straw. It is not like I can

> make up for the loss by being more active to take my mind off of it.

> It also accelerates the loss of energy/activity. You feel some sort

> of survival vulnerability when you actually cannot eat. It is a very

> unsettling feeling.

>

> I have had times when I was in such a severe crash, that I had to lie

> down in a dark room and do nothing. I couldn't tolerate the TV,

> can't listen to music, that hurts my head, would get hoarse and out

> of breath if I talked more than 2 paragraphs, and couldn't sleep. I

> hated those days, and thankfully, shutting myself down like that did

> give me just enough of a complete rest, to get some momentum going to

> get back to a better place. But going through that leaves its mark

> even when you do get better. You DON " T want to get back there.

>

> Maybe I will adapt to not eating, I don't know. I have heard from

> someone on the list who has been on liquids for 6 monhts. I talk to

> someone else who has had a central line for a few years. They seem

> to be managing and adapted to it. But I don't know how they do it.

>

> I guess I have been thinking that a lot of my problems were

> gallbladder related. I had a lot of hope that when I had my

> gallbladder out, I could finally get back to eating more normally.

> It has been a long time since I could eat " normally " . So when the

> surgery had the opposite result, it was quite a disappointment to say

> the least. I guess I thought I would go back to the doctor's and they

> would figure out it was a problem from surgery and fix it. I was

> really surprised when they told me the stomach emptying test was

> abnormal. I think I even still had doubts that I had mito until that

> moment. I have only been diagnosed with it for a year, but I haven't

> had a muscle biopsy yet. I have been too sick to travel to get one.

>

> I also have found it curious that I could have mito that I inherited,

> since they say it has to be passed from your mother. My mother was

> not someone who had energy issues. She worked until she was 84. She

> owned and ran a small business and went up and down three sets of

> stairs all day long. She had more energy in her 80s than I did in my

> 40s. :-) So I kept thinking maybe I had something else and didn't

> have mito. I still can't reconcile that fact to the mito, but I

> guess I still think that I must have acquired it and research has

> just not caught up yet with all the ways that it can be acquired.

>

> As a matter of fact, my mother had three aunts that all lived into

> their 90s and gardened into their 80s. So I always thought I could

> expect good genes and health and longevity ran in our family.

>

> Although I have really identified with the symptoms and lifestyle and

> progression of the disease that I have read on the list, the family

> involvement and health issues in the extended family was something I

> wasn't able to indentify with. I have one child who has suggestive

> energy issues and one sibling who had health problems similar to

> mine, but not as bad and that is about it. AT least at this time.

> Maybe there are health issues with family members that I don't know

> about though.

>

> Well...I have worn myself out. Time to go. I expect my posts will get

> shorter sometime soon. [g] Thanks for listening..and I noticed posts

> about an injured arm you have. Hope it gets better very soon.

>

> :-)

> Adam

>

>

>

>

>

>> Adam

>>

>> Never worry about venting. That is one of the most important things

> you can > do. I don't think that I can necessarily improve your

> feelings, but I can > let you know that I understand and care about

> you. Some things can really> look bad and then the sun of the new day

> can help to just get by. Try to be> nice to yourself and give

> yourself a chance. Don't beat yourself up because

>> you are down. We have all been there. When we loose function in

> anyway, we> need to give ourselves permission to grieve for that

> loss. The grieving> process is different for everyone and lasts a

> different length of time. I> think I can understand your frustration -

> I have been there more than once.

>> Your ability to tell the group how you feel is a gift to the group.

> It makes> us become aware or reminds us that our lives are not a bowl

> of cherries, but> somehow we get through and become a stronger

> person. You will too.

>>

>> Hugs,

>> laurie

>>

>

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail is

> entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with their

> physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

>