Re: Share your strength, please

January 1, 2003

Nan

I will post to separatly, but wanted you to know that the sleeping is likely her body trying to re-build energy. Sleep is the only thing that will get me through a crash. If she is that sick, then she is probably in constant crash mode. Anxiety and depression are a normal consequence of dealing with the cronic disease. I take Paxil which helps. I am concerned that if they try to take her off the pain meds that the pain will cause her a bigger crash.

Have you printed off the paper " Management Strategy for Acute Illness in Patients with Mitochondrial Cytopathy " on the UMDF web-site for her doctors? It makes lots of good suggestions that might help .

I can tell how much you care about and how much you want to help. Being the care-giver is sometimes harder than the patient. My thoughts are with you as well as .

Hugs,

laurie

"

Reply-To:

Date: Wed, 01 Jan 2003 10:15:45 -0000

To:

Subject: Share your strength, please

My posts are few but they always seem to be long. For this, I

apologize. However, I wonder if any of your ears were ringing on New

Years Eve?

My daughter and I went to visit my stepdaughter (our Mito 25 year old

girl) who is in the hospital. So far, since I found this group, she

hasn't been home long enough or felt well enough to follow my lead and

" check it out " . She feels very alone in her fight for answers to this

mystery that has become her life. I stressed to her once more that her

goal needs to be to get home and STAY home (out of the hospital max

has been about 48 hours of late) long enough to get connected with

some of the amazing people who belong to this group. She needs to see

that she is not alone, that she can do more than JUST survive this

disease, but she can come to terms of some sort and learn to actually

live with it.

They are now talking about moving her from the GI floor, to the Psych

Unit, to help her with the depression that she is dealing with, with

possible addiction issues to her pain meds (delaudid), and to help her

with sleep/anxiety issues. She sleeps all day. Her pain seems to be

worse when she is out of the hospital and it is felt that this may be

because of anxiety about being out of the hospital. She is afraid to

be home.

I spoke highly of each of you who has shared their stories since I

have joined the group. She needs your strength to help her get through

this period in her life. No one is more justified in their reason for

depression and denial than she is, but she needs some strength and

guidance to help her over this bump in the road.

I have been creating all kinds of note books for her for reference

material. Please, feel free to send whatever words of wisdom or

encouragement that you may have for her. I will print these up and

take the messages to in the hospital to help her see that she is

not alone.

She is not yet a member of this group. But she is a big user of the

internet when she is well and I believe she will become a member of

the group as soon as she is home and well enough to sit at the

computer. If anyone needed your strength and support, she does. Thank

you all for making me see that she CAN survive this.

Thanks in advance -

Nan

January 1, 2003

Good Morning to and Nan,

I'm so touched by this message and hope that this

group can continue to support both of you while you

are enduring these life altering events. Many of us

are quite familiar with the inability of medical teams

to understand this disease and it's treatment. The

most important thing I can share with you is that each

symptom must be treated individually and this often

takes a team of doctors to be involved. I remember

that 's insurance is an issue so this may be a

difficult accomplishment at best but it's one of those

things that you take one step at a time chosing the

most important need first. I'm sorry that you have

spent so much recent time in the hospital, .

That's no fun and we need to get you home!

I want to ask if you are on an IV drip at the

hospital. Usually, this is the case. If Nan would

please look carefully at it, please see if it contains

" ringers lactate " . This should be changed to a

solution of D5 or D10 rather than the ringers because

ringers cause a lactate acid increase for someone with

Mito which would also increase the pain. It takes an

experienced physician to know how much D5 (or D10

which is not often available) to give a patient, but

that should be easier than making them understand that

she should not be on ringers which is the common IV

fluid used. , they should be checking your blood

work for lactic acid build up.

I cannot stress enough what Laurie wrote about sleep.

When someone has Mito and they are in a " crash " they

tend to sleep many hours and sometimes days. This is

the body's way of catching up with the energy

depletion so it's not a bad thing. If she is on a lot

of meds for pain, that would increase her sleepiness

as they usually do. Pain itself takes energy thus the

cycle. Is she receiving any Coq10? Has anyone added

the B vitamins to 's intake? Is she eating any

food at all or is she completely on IV fluids? I know

I'm asking a lot of questions, but all of these things

should be taken into consideration. , if you are

unable to digest food, you may need to be seen my a GI

specialist who could make sure you are getting the

proper diet one way or the other.

Thru the course of my years dealing with this disease

(Many of which I did not know I had it), I have taken

anxiety medicine because I really needed it. There's

something about a chronic illness that does cause

depression and anxiety and it is very real.

Counseling is a good thing for a Mito patient as these

counselors, although they don't understand the

disease, do understand the grief caused by such an

illness and can help us with dealing.

- You have a wonderful support system with Nan.

Let her be your strength and help you thru the tough

times but also come to us as we are here for you. We

are dealing with this in different ways as this

disease seems to strike us all so differently, but we

understand and feel your pain and grief. You are

suffering losses and have no control of that. It's a

difficult thing to accept. Just yesterday, I made a

commitment to recognize my abilities and not the

disabilities. My plans are to make good use of those

abilities and you may find that this would help you

too. I heard that you are pretty internet savvy.

Well..the Mitoldies could use your expertise so

perhaps you and I could talk about this when you are

up to it. I'm anxious to meet you personally but

happy to know about you because Nan has cared enough

to bring you to us.

Get Well....and try to look forward to a brighter

future. We are here to help in any way we can.

Hugs!

Alice

January 1, 2003

Thank you for the reference to the literature but I am having a heck

of a time locating it on the UMDF website. I can't find anything

listed under the name or title of " Management Strategy for Acute

Illness in Patients with Mitochondrial Cytopathy " . Can you help me

out? I am getting rather frustrated. (As noted from the time of my

original post, I couldn't sleep last night).

In response to some of the other things you mentioned, while we

understand that the body will require the " down time " to rejuvenate,

has no apparent " up time " . She sleeps all day and gets little or

no good sleep at night. Her TPN is running at night and she is up and

down for her " bio breaks " and the pain seems to increase at night.

The anxiety and depression are normal. But she has had issues with

depression in the past and we feel that she would certainly benefit

from dealing with a counselor to help her work through some of her

issues. She has been diagnosed with a chronic disease, lost her job

and her independence all in the past 12 months. We, her family, are

ill equipped to handle it when she talks about wanting it all to end

and not wanting to deal with it anymore. Valid statements, yes. Scary

for us, YES. But the fact of the matter is she needs to find a way to

come to terms with her NEW reality. She needs to set realistic goals.

She needs to find a way to want to make it through to tomorrow. And

the pain is making it difficult to focus.

Her 4 year old son, n, is a sweetheart. But he needs help, too.

I broke my thumb on Christmas (long story) then, I became ill with a

nasty bug over the weekend (102 temp, vomiting, etc). n is very

compassionate, but overly protective and gets very concerned. He

thinks if someone is sick, they will go to the hospital and be gone.

He kept bringing me cough drops thinking that the " medicine " would

help me. He should be a wonderful focus point for her, but it is

difficult to remember that through the pain. ( I ramble and apologize).

Anyhoo, any help you can give on finding that article would be

appreciated.

Nan

> Nan

>

> I will post to separatly, but wanted you to know that the

sleeping is

> likely her body trying to re-build energy. Sleep is the only thing

that will

> get me through a crash. If she is that sick, then she is probably in

> constant crash mode. Anxiety and depression are a normal consequence of

> dealing with the cronic disease. I take Paxil which helps. I am

concerned

> that if they try to take her off the pain meds that the pain will

cause her

> a bigger crash.

>

> Have you printed off the paper " Management Strategy for Acute Illness in

> Patients with Mitochondrial Cytopathy " on the UMDF web-site for her

doctors?

> It makes lots of good suggestions that might help .

>

> I can tell how much you care about and how much you want to help.

> Being the care-giver is sometimes harder than the patient. My

thoughts are

> with you as well as .

>

> Hugs,

> laurie

>

> From: " msnanlk <msnanlk@a...> " <msnanlk@a...>

> Reply-To:

> Date: Wed, 01 Jan 2003 10:15:45 -0000

> To:

> Subject: Share your strength, please

>

> My posts are few but they always seem to be long. For this, I

> apologize. However, I wonder if any of your ears were ringing on New

> Years Eve?

>

> My daughter and I went to visit my stepdaughter (our Mito 25 year old

> girl) who is in the hospital. So far, since I found this group, she

> hasn't been home long enough or felt well enough to follow my lead and

> " check it out " . She feels very alone in her fight for answers to this

> mystery that has become her life. I stressed to her once more that her

> goal needs to be to get home and STAY home (out of the hospital max

> has been about 48 hours of late) long enough to get connected with

> some of the amazing people who belong to this group. She needs to see

> that she is not alone, that she can do more than JUST survive this

> disease, but she can come to terms of some sort and learn to actually

> live with it.

>

> They are now talking about moving her from the GI floor, to the Psych

> Unit, to help her with the depression that she is dealing with, with

> possible addiction issues to her pain meds (delaudid), and to help her

> with sleep/anxiety issues. She sleeps all day. Her pain seems to be

> worse when she is out of the hospital and it is felt that this may be

> because of anxiety about being out of the hospital. She is afraid to

> be home.

>

> I spoke highly of each of you who has shared their stories since I

> have joined the group. She needs your strength to help her get through

> this period in her life. No one is more justified in their reason for

> depression and denial than she is, but she needs some strength and

> guidance to help her over this bump in the road.

>

> I have been creating all kinds of note books for her for reference

> material. Please, feel free to send whatever words of wisdom or

> encouragement that you may have for her. I will print these up and

> take the messages to in the hospital to help her see that she is

> not alone.

>

> She is not yet a member of this group. But she is a big user of the

> internet when she is well and I believe she will become a member of

> the group as soon as she is home and well enough to sit at the

> computer. If anyone needed your strength and support, she does. Thank

> you all for making me see that she CAN survive this.

>

> Thanks in advance -

> Nan

>

January 1, 2003

Nan,

Hi, my name is and I am another one of the Mitoldies moderators. I

no longer could find the article referenced by Alice at the UMDF wedsite,

but here is the file. I sure hope this helps . Please tell her I said

to hang in there and let her know that knowledge is power and we will help

her and you learn as much as we can to empower you both to help her and her

doctors.

Nan wrote:

> Thank you for the reference to the literature but I am having a heck

> of a time locating it on the UMDF website. I can't find anything

> listed under the name or title of " Management Strategy for Acute

> Illness in Patients with Mitochondrial Cytopathy " . Can you help me

> out? I am getting rather frustrated. (As noted from the time of my

> original post, I couldn't sleep last night).

>

> In response to some of the other things you mentioned, while we

> understand that the body will require the " down time " to rejuvenate,

> has no apparent " up time " . She sleeps all day and gets little or

> no good sleep at night. Her TPN is running at night and she is up and

> down for her " bio breaks " and the pain seems to increase at night.

>

> The anxiety and depression are normal. But she has had issues with

> depression in the past and we feel that she would certainly benefit

> from dealing with a counselor to help her work through some of her

> issues. She has been diagnosed with a chronic disease, lost her job

> and her independence all in the past 12 months. We, her family, are

> ill equipped to handle it when she talks about wanting it all to end

> and not wanting to deal with it anymore. Valid statements, yes. Scary

> for us, YES. But the fact of the matter is she needs to find a way to

> come to terms with her NEW reality. She needs to set realistic goals.

> She needs to find a way to want to make it through to tomorrow. And

> the pain is making it difficult to focus.

>

> Her 4 year old son, n, is a sweetheart. But he needs help, too.

> I broke my thumb on Christmas (long story) then, I became ill with a

> nasty bug over the weekend (102 temp, vomiting, etc). n is very

> compassionate, but overly protective and gets very concerned. He

> thinks if someone is sick, they will go to the hospital and be gone.

> He kept bringing me cough drops thinking that the " medicine " would

> help me. He should be a wonderful focus point for her, but it is

> difficult to remember that through the pain. ( I ramble and apologize).

>

> Anyhoo, any help you can give on finding that article would be

> appreciated.

>

> Nan

>

>>Nan

>>

>>I will post to separatly, but wanted you to know that the

>

> sleeping is

>

>>likely her body trying to re-build energy. Sleep is the only thing

>

> that will

>

>>get me through a crash. If she is that sick, then she is probably in

>>constant crash mode. Anxiety and depression are a normal consequence of

>>dealing with the cronic disease. I take Paxil which helps. I am

>

> concerned

>

>>that if they try to take her off the pain meds that the pain will

>

> cause her

>

>>a bigger crash.

>>

>>Have you printed off the paper " Management Strategy for Acute Illness in

>>Patients with Mitochondrial Cytopathy " on the UMDF web-site for her

>

> doctors?

>

>>It makes lots of good suggestions that might help .

>>

>>I can tell how much you care about and how much you want to help.

>>Being the care-giver is sometimes harder than the patient. My

>

> thoughts are

>

>>with you as well as .

>>

>>Hugs,

>>laurie

>>

>>From: " msnanlk <msnanlk@a...> " <msnanlk@a...>

>>Reply-To:

>>Date: Wed, 01 Jan 2003 10:15:45 -0000

>>To:

>>Subject: Share your strength, please

>>

>>My posts are few but they always seem to be long. For this, I

>>apologize. However, I wonder if any of your ears were ringing on New

>>Years Eve?

>>

>>My daughter and I went to visit my stepdaughter (our Mito 25 year old

>>girl) who is in the hospital. So far, since I found this group, she

>>hasn't been home long enough or felt well enough to follow my lead and

>> " check it out " . She feels very alone in her fight for answers to this

>>mystery that has become her life. I stressed to her once more that her

>>goal needs to be to get home and STAY home (out of the hospital max

>>has been about 48 hours of late) long enough to get connected with

>>some of the amazing people who belong to this group. She needs to see

>>that she is not alone, that she can do more than JUST survive this

>>disease, but she can come to terms of some sort and learn to actually

>>live with it.

>>

>>They are now talking about moving her from the GI floor, to the Psych

>>Unit, to help her with the depression that she is dealing with, with

>>possible addiction issues to her pain meds (delaudid), and to help her

>>with sleep/anxiety issues. She sleeps all day. Her pain seems to be

>>worse when she is out of the hospital and it is felt that this may be

>>because of anxiety about being out of the hospital. She is afraid to

>>be home.

>>

>>I spoke highly of each of you who has shared their stories since I

>>have joined the group. She needs your strength to help her get through

>>this period in her life. No one is more justified in their reason for

>>depression and denial than she is, but she needs some strength and

>>guidance to help her over this bump in the road.

>>

>>I have been creating all kinds of note books for her for reference

>>material. Please, feel free to send whatever words of wisdom or

>>encouragement that you may have for her. I will print these up and

>>take the messages to in the hospital to help her see that she is

>>not alone.

>>

>>She is not yet a member of this group. But she is a big user of the

>>internet when she is well and I believe she will become a member of

>>the group as soon as she is home and well enough to sit at the

>>computer. If anyone needed your strength and support, she does. Thank

>>you all for making me see that she CAN survive this.

>>

>>Thanks in advance -

>>Nan

>>

January 1, 2003

Nan

I see that Alice and have helped you find the article. Just a suggestion, but I download any articles I feel are worthwhile into a mito folder. This way, when I need a copy for a doctor, I can print it out.

Another reason for depression in mito is that the brain is affected by the mito and depression in many cases is due to a problem with the brain's neurotransmitters. This is also the reason that many with migraines have depression. Living with the condition is bad enough, but when brain chemistry is off, it makes it worse.

Please use us for support. It sounds as if you have your hands full and are needed on many fronts. Long posts are not a problem. If you need to vent, just do it.

laurie

Reply-To:

Date: Wed, 01 Jan 2003 17:34:54 -0000

To:

Subject: Re: Share your strength, please