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

September 22, 2004

Adam

I am so sorry that you are feeling like this It is very scary

I am Jan wife to Duane who has mito My dear husband if he could explain to

you how he feels it would mirror exactly what you said when he could

communicate well he said the same things that you just said and yes it did

pass and then went to some thing else.

You don't ever have to say sorry this is what we are here for to encourage

you, This disease is very hard for the mito patient and the caregiver and we

all need to be encouraged.

Night is my worse time and it is always at an inappropriate time when I

feel scared or lonely and things start to bother me and I cant sleep and

cant call any one because it is to late. I am usually up till 3 am so feel

free to e-Mail me.

Hugs Jan

Having a setback...late night posts r never good.. [g]

>

> Hello..

>

> Having a setback. Felt discomfort in my abdomen before going to bed

> at 10:30p and woke up 45 minutes later feeling more uncomfortable.

> Wide awake now. Not feeling too positive at all right now.

> Noticing some worsening of my overall condition today that I hadn't

> really picked up on before. Feeling like the latest surgery and now

> the inability to eat is really taking it's toll in ways that have yet

> to be discovered.

>

> I feel like my circulation is suddenly worse. Standing at the sink

> to brush my teeth for 3 minutes and the blood is pooling in my lower

> legs and itching so that I have to move and go lay down to get

> relief. Attempted to go outside and found I was light headed when

> trying to stoop or bend forward. Which might be continuing low blood

> pressure which was noted at the hospital. It was down to 89/52

> during the night there. I think my coloring is pale and when I cut

> my finger today, I hardly bled at all. That is nothing new though. I

> feel poor circulation and low blood pressure is really detrimental to

> healing. I think I might have a vascular problem but I have asked

> the doctor about it before and initial evaluation didn't pick up on

> anything. I don't know what they can do to evaluate that anyway

> except blood work.

>

> I have been trying the Reglan medication but I am not sure if it is

> helping much. At first I was getting cramps with it, but now I am

> not getting that. And I am still constipated. I also seem to feel a

> little jittery and not sure where that could be coming from. Not a

> familiar symptom for me. I still have another week to go before my

> appt with the GI doc that specializes in dysmotility.

>

> I realize that there are so many of you on this list that are

> struggling with much more difficult problems than I am. I don't feel

> I should be complaining. I just feel I am reaching a point that for

> me is like a line in the sand. A line that I don't want to cross

> over. I have been below my comfort level for quite awhile. Not

> able to really satisfy my need for much of anything. Still I could

> always set a goal, try to improve something, think I could get back

> to a better place. I don't even feel depressed really, just not

> wanting to accept what is inevitable I guess. Just seems like you

> get to a point where you can't expect to actually improve and gain

> ground so what is there to look forward to except getting worse.

>

> I apologize in advance. I can't really read enough of the archives

> to get a sense of how comfortable the group is with sharing these

> type of feelings. I shouldn't even be up typing at this hour either,

> but...

>

> I don't want to bring anyone else down. I just thought there is no

> way that some of you have not felt this way before and you are still

> here encouraging other people, so I guess you must have gotten past

> it. I don't know how. :-)

>

> Well...I got that off my chest. Guess I will go read a book.

> Good night,

> Adam

>

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

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e mail is entirely responsible for its content. List members are reminded of

their responsibility to evaluate the content of the postings and consult

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>

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>

September 22, 2004

Adamm,

I'm sorry that you are experiencing this setback and beginning to wonder if you

should be on IV therapy at home. I'm not a doctor so I can only wonder but it

might be something to suggest to the doctor. D5 or D10 would be the best choice

for a Mito patient and many do really well if the doctor adds IV Carnitor. Are

you on Carnitor as a med?

Low blood pressure is a very difficult thing to deal with. After my last

surgery, they were very concerned that my BP was 70/40 and I was not allowed to

leave the hospital until it went up. My BP is normally higher.

I'd suggest that you contact the doctor today and tell him exactly what you told

us and please let us know what he says if you can.

You have vented here and this is the perfect place to do that. We understand

and offer that to you. Please never feel afraid to express these things on

Mitoldies. We all seem to have a turn venting.

Alice

September 22, 2004

> Low blood pressure is a very difficult thing to deal with. After

> my last surgery, they were very concerned that my BP was 70/40 and

> I was not allowed to leave the hospital until it went up. My BP is

> normally higher.

My blood pressure gets that low sometimes, but my doctor said

it " isn't a problem " . Yet I am dizzy and light-headed when this

happens. My blood pressure has also gone as high as 180/100 after

surgery.

I am going to a cardiologist soon, hopefully just for a " baseline " ,

but I have had some blood pressure and slow heart rate issues maybe

they can shed some light on.

Take care,

RH

September 22, 2004

Alice

I once had the very low blood pressure following a surgery. They wouldn't

let me get out of bed (not even to use the bathroom) and said they would

keep me until it went up. I told it would be fine, if they would only let me

get up. They finally listened and gave it a try. I went home the same day.

Just another body weirdness that some of us have.

laurie

>

> Reply-To:

> Date: Wed, 22 Sep 2004 07:15:42 -0600

> To: >

> Subject: Re: Having a setback...late night posts r never good.. [g]

>

> Adamm,

>

> I'm sorry that you are experiencing this setback and beginning to wonder if

> you should be on IV therapy at home. I'm not a doctor so I can only wonder

> but it might be something to suggest to the doctor. D5 or D10 would be the

> best choice for a Mito patient and many do really well if the doctor adds IV

> Carnitor. Are you on Carnitor as a med?

>

> Low blood pressure is a very difficult thing to deal with. After my last

> surgery, they were very concerned that my BP was 70/40 and I was not allowed

> to leave the hospital until it went up. My BP is normally higher.

>

> I'd suggest that you contact the doctor today and tell him exactly what you

> told us and please let us know what he says if you can.

>

> You have vented here and this is the perfect place to do that. We understand

> and offer that to you. Please never feel afraid to express these things on

> Mitoldies. We all seem to have a turn venting.

>

> Alice

>

September 22, 2004

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

>

> Reply-To:

> Date: Wed, 22 Sep 2004 04:59:29 -0000

> To:

> Subject: Having a setback...late night posts r never good.. [g]