Mitochondrial Chat

lfitzger (Oct 6, 2008 7:02:11 PM)
(This user has entered Mitochondrial Chat)

lfitzger (Oct 6, 2008 7:02:20 PM)
hi jenn

Jennifer-S (Oct 6, 2008 7:02:22 PM)
hi lf

Jennifer-S (Oct 6, 2008 7:02:28 PM)
how are things?

lfitzger (Oct 6, 2008 7:02:35 PM)
how are you doing?

Jennifer-S (Oct 6, 2008 7:02:46 PM)
so so...its been a hard 2 weeks

lfitzger (Oct 6, 2008 7:02:48 PM)
I'm feeling much better - on steroids

Jennifer-S (Oct 6, 2008 7:02:55 PM)
thats good

lfitzger (Oct 6, 2008 7:03:21 PM)
kind of crashy - trying to get some things done now that I can breathe

Jennifer-S (Oct 6, 2008 7:03:40 PM)
did you solve your aide situation?

lfitzger (Oct 6, 2008 7:04:00 PM)
I think my asthma was triggered by a different kind of filter for my vent, so I've not used it for the past few nights

lfitzger (Oct 6, 2008 7:04:29 PM)
I didn't have anyone last week. Region II is coming out tomorrow to re-evaluate my needs

Jennifer-S (Oct 6, 2008 7:04:48 PM)
hopefully they can work it out for you

lfitzger (Oct 6, 2008 7:04:53 PM)
Do you have anyone for transportation

lfitzger (Oct 6, 2008 7:05:26 PM)
I hope so too, but it has taken me three weeks to undo the last one, so I'm a little hesitant

Jennifer-S (Oct 6, 2008 7:05:28 PM)
no unfortunatly

lfitzger (Oct 6, 2008 7:06:00 PM)
I wish you could get that taken care of. I can't imagine being in your shoes

Jennifer-S (Oct 6, 2008 7:06:36 PM)
i've been having to drive because i don't have a choice and i'm not comfortable with it

Jennifer-S (Oct 6, 2008 7:06:57 PM)
they screwed up my social security too

lfitzger (Oct 6, 2008 7:07:07 PM)
Not again!

Jennifer-S (Oct 6, 2008 7:07:19 PM)
yes again. they think i can live on 379

lfitzger (Oct 6, 2008 7:07:24 PM)
A one time thing or another battle?

lfitzger (Oct 6, 2008 7:07:45 PM)
Hardly!

Jennifer-S (Oct 6, 2008 7:07:54 PM)
i don't know. they say they overpaid me $10,000 but that can't be right

Jennifer-S (Oct 6, 2008 7:08:13 PM)
they haven't fixed my medicare yet either and my copays are killing me

lfitzger (Oct 6, 2008 7:08:18 PM)
You have had more problems

Jennifer-S (Oct 6, 2008 7:08:34 PM)
oh thats just the start

lfitzger (Oct 6, 2008 7:08:42 PM)
What else?

Jennifer-S (Oct 6, 2008 7:09:02 PM)
they put me on new meds. verapimil, clonopin and magnesium

Jennifer-S (Oct 6, 2008 7:09:13 PM)
i'll explain the rest on the phone

lfitzger (Oct 6, 2008 7:09:22 PM)
okay!

Jennifer-S (Oct 6, 2008 7:10:59 PM)
i wonder what happened to everyone. I don't want to sit here babysitting a quiet chat again

Jennifer-S (Oct 6, 2008 7:11:23 PM)
any ideas on those new meds

lfitzger (Oct 6, 2008 7:12:16 PM)
I've been on Klonopin. It worked well, but after several years I was taken off because it makes apnea worse.

lfitzger (Oct 6, 2008 7:12:39 PM)
I'm on masive doses of mag. I spill it.

Jennifer-S (Oct 6, 2008 7:12:39 PM)
what were you on it for?

lfitzger (Oct 6, 2008 7:13:13 PM)
Kent took Verapimel for years for migraine control, but I don't think I've taken it.

Jennifer-S (Oct 6, 2008 7:13:27 PM)
i went to dave's wake. he died from an infection in his tube

lfitzger (Oct 6, 2008 7:13:50 PM)
That is so sad. I'm glad you got to go.

Jennifer-S (Oct 6, 2008 7:14:30 PM)
i went with julie...remember her?

lfitzger (Oct 6, 2008 7:14:47 PM)
Yes, it took me a minute

Jennifer-S (Oct 6, 2008 7:15:14 PM)
his mom was glad we came

lfitzger (Oct 6, 2008 7:15:28 PM)
How is she handling it?

Jennifer-S (Oct 6, 2008 7:15:42 PM)
very good. i was surprised

lfitzger (Oct 6, 2008 7:15:51 PM)
that's good.

Jennifer-S (Oct 6, 2008 7:15:55 PM)
she lost her other son from mito 17 mts ago too

lfitzger (Oct 6, 2008 7:16:20 PM)
that is really hard then. Does she have it?

Jennifer-S (Oct 6, 2008 7:16:30 PM)
she knows they are at peace not

Jennifer-S (Oct 6, 2008 7:16:41 PM)
she appears very healthy but i don't know

lfitzger (Oct 6, 2008 7:16:45 PM)
that is true, but still hard

Jennifer-S (Oct 6, 2008 7:16:57 PM)
what is scary is that he was always healthier than me

lfitzger (Oct 6, 2008 7:17:00 PM)
you wonder when brothers have it

lfitzger (Oct 6, 2008 7:17:25 PM)
but your attitude and approach to life is move positive

Jennifer-S (Oct 6, 2008 7:17:32 PM)
he was having swallowing problems and his legs were bad but...

Jennifer-S (Oct 6, 2008 7:17:49 PM)
its hard to be little mary sunshine lately though

lfitzger (Oct 6, 2008 7:18:22 PM)
I know. I have had the problem too. I'm not mary sunshine, but usually real positive

Jennifer-S (Oct 6, 2008 7:18:35 PM)
i'm a trying

Jennifer-S (Oct 6, 2008 7:18:48 PM)
randy won his championship!!

lfitzger (Oct 6, 2008 7:18:49 PM)
it is amazing how something as simple as breathing can make such a difference

lfitzger (Oct 6, 2008 7:18:56 PM)
I know you are.

Jennifer-S (Oct 6, 2008 7:19:01 PM)
i know...people take it for granted

lfitzger (Oct 6, 2008 7:19:02 PM)
Hurraayyyy

Jennifer-S (Oct 6, 2008 7:19:16 PM)
firecracker is doing better

lfitzger (Oct 6, 2008 7:19:36 PM)
Sometimes being something you aren't feeling is more stressful

Jennifer-S (Oct 6, 2008 7:19:52 PM)
my niece Haylee was diagnosed finally. chromosone 15 defect

lfitzger (Oct 6, 2008 7:19:54 PM)
I'm glad firecracker is doing better. that is great to hear

lfitzger (Oct 6, 2008 7:20:27 PM)
that is the fragile X or in addition to?

Jennifer-S (Oct 6, 2008 7:20:40 PM)
it wasn't fragile x

Jennifer-S (Oct 6, 2008 7:20:56 PM)
its nicknamed the clown disease

lfitzger (Oct 6, 2008 7:21:02 PM)
Really! I'm not familiar with defect in 15

Jennifer-S (Oct 6, 2008 7:21:03 PM)
have you heard of it?

Jennifer-S (Oct 6, 2008 7:21:14 PM)
its very severe

Jennifer-S (Oct 6, 2008 7:21:20 PM)
she will never be normal

lfitzger (Oct 6, 2008 7:21:38 PM)
Okay, I've heard of clown disease. I'll have to look it up in my syndrome book - if I can find it

Jennifer-S (Oct 6, 2008 7:21:43 PM)
maybe i have the wrong number

lfitzger (Oct 6, 2008 7:22:00 PM)
It sounds like she is severe

Jennifer-S (Oct 6, 2008 7:22:13 PM)
its been verified by testing so they are sure

lfitzger (Oct 6, 2008 7:22:34 PM)
Doesn't matter what number it is - I do better with what they are called

Jennifer-S (Oct 6, 2008 7:22:58 PM)
either way she is at a 12 mth level and will stay that way for awhile

lfitzger (Oct 6, 2008 7:23:03 PM)
It is good they have a definitive diagnosis. Is it an inherited disease

Jennifer-S (Oct 6, 2008 7:23:08 PM)
yes

Jennifer-S (Oct 6, 2008 7:23:22 PM)
we have the genes form you know where

lfitzger (Oct 6, 2008 7:23:44 PM)
My son feels the same way.

lfitzger (Oct 6, 2008 7:23:54 PM)
He does not have EDS

Jennifer-S (Oct 6, 2008 7:23:59 PM)
where is everyone

lfitzger (Oct 6, 2008 7:24:06 PM)
Just some of the symptoms

lfitzger (Oct 6, 2008 7:24:31 PM)
Don't know, but my tailbone hurts, so I won't be here lots longer.

lfitzger (Oct 6, 2008 7:24:53 PM)
I haven't read the transcript lately. Are people coming in later?

Jennifer-S (Oct 6, 2008 7:24:59 PM)
i can try to stick it out awhile. we need to advertise more i guess

Jennifer-S (Oct 6, 2008 7:25:24 PM)
yes a few

lfitzger (Oct 6, 2008 7:25:31 PM)
Yes, we need to get things going.

Jennifer-S (Oct 6, 2008 7:25:32 PM)
lk, artemesia

lfitzger (Oct 6, 2008 7:25:56 PM)
the moms seem to like the later hour or at least that is what they said.

Jennifer-S (Oct 6, 2008 7:26:46 PM)
i want to help them but its so hard staying on that long

lfitzger (Oct 6, 2008 7:27:15 PM)
I agree. I have to sleep when my body is ready.

lfitzger (Oct 6, 2008 7:31:14 PM)
I think I may have dystonia in my neck

Jennifer-S (Oct 6, 2008 7:31:30 PM)
what does that mean anyway

lfitzger (Oct 6, 2008 7:32:17 PM)
It is like a cramp, but worse and it locks and can't be moved. I have it in my hands, feet and ankles

Jennifer-S (Oct 6, 2008 7:32:39 PM)
oh thats what i have...i just call it charley horses

Jennifer-S (Oct 6, 2008 7:32:48 PM)
i have them badly

Jennifer-S (Oct 6, 2008 7:32:58 PM)
thats what the klonopin is for

lfitzger (Oct 6, 2008 7:33:36 PM)
I have bad cramps, but my fingers and ankles twist in ways that I wouldn't think possible and then stay that way for up to an hour.

Jennifer-S (Oct 6, 2008 7:33:37 PM)
mine have been terrible lately

Jennifer-S (Oct 6, 2008 7:34:04 PM)
that pain is right up there with child birth

lfitzger (Oct 6, 2008 7:34:08 PM)
I also have dystonia in my feet that is constant in all directions - just means pain with any movement

Jennifer-S (Oct 6, 2008 7:34:31 PM)
mine freeze like you described

lfitzger (Oct 6, 2008 7:35:06 PM)
I had C-sections, but did have labor. This is worse than labor, but not as bad as torn rotator cuff

lfitzger (Oct 6, 2008 7:35:18 PM)
They aren't fun jenn.

Jennifer-S (Oct 6, 2008 7:35:22 PM)
thats different pain

lfitzger (Oct 6, 2008 7:35:52 PM)
At least rotator pain got better after surgery, but this gets worse.

lfitzger (Oct 6, 2008 7:36:22 PM)
I have the defective gene for adult onset dystonia

Jennifer-S (Oct 6, 2008 7:36:23 PM)
my rheum. approved me for surgery...i'm still nervous about it though

lfitzger (Oct 6, 2008 7:36:34 PM)
On your wrist?

lfitzger (Oct 6, 2008 7:36:53 PM)
sometimes you just have to trust the doc, but it is really hard.

Jennifer-S (Oct 6, 2008 7:36:58 PM)
wrist, whoulder, hysterctomy...take your pick lol

Jennifer-S (Oct 6, 2008 7:37:11 PM)
i can't type today

lfitzger (Oct 6, 2008 7:37:13 PM)
I hope not all at once

Jennifer-S (Oct 6, 2008 7:37:20 PM)
oh no lol

lfitzger (Oct 6, 2008 7:37:39 PM)
I never can. My tremor is worse on the new inhaler which makes it worse

Jennifer-S (Oct 6, 2008 7:37:41 PM)
thats what needs to be done

lfitzger (Oct 6, 2008 7:38:10 PM)
What hurts the most or don't you get to pick the first spot?

Jennifer-S (Oct 6, 2008 7:38:12 PM)
the wrist and shoulder would be smart to do at the same time though

Jennifer-S (Oct 6, 2008 7:38:23 PM)
oh they all hurt

Jennifer-S (Oct 6, 2008 7:38:35 PM)
the hyst is the most dangerous

lfitzger (Oct 6, 2008 7:38:46 PM)
If it is on the same side, that would make sense. I wouldn't think PT would be a problem

Jennifer-S (Oct 6, 2008 7:38:54 PM)
same side

Jennifer-S (Oct 6, 2008 7:39:00 PM)
right hand though

Jennifer-S (Oct 6, 2008 7:39:08 PM)
i'm right handed

lfitzger (Oct 6, 2008 7:39:20 PM)
A hospital in Lansing is doing robot assisted lapo. hys

Jennifer-S (Oct 6, 2008 7:39:28 PM)
it would mean major pain relief eventually

Jennifer-S (Oct 6, 2008 7:39:46 PM)
i'm not a candidate for those

lfitzger (Oct 6, 2008 7:39:54 PM)
You'll learn to use your left. I can do everything but write after my shoulder injusry

Jennifer-S (Oct 6, 2008 7:40:09 PM)
i know but its hard

lfitzger (Oct 6, 2008 7:40:55 PM)
It takes lots of concentration - especially at first. I still have to use my left due to limited range of motion

Jennifer-S (Oct 6, 2008 7:40:59 PM)
i should have my new computer equipment in a few weeks

lfitzger (Oct 6, 2008 7:41:08 PM)
great!!!

Jennifer-S (Oct 6, 2008 7:41:16 PM)
that should help a lot

lfitzger (Oct 6, 2008 7:41:35 PM)
What things are you getting?

Jennifer-S (Oct 6, 2008 7:42:45 PM)
zoom text, forms problems, adobe reader, laptop, large flat screen, special mouse thingy, etc

Jennifer-S (Oct 6, 2008 7:42:54 PM)
programs lol

lfitzger (Oct 6, 2008 7:43:10 PM)
Super! That should help alot!

Jennifer-S (Oct 6, 2008 7:43:21 PM)
its all visually impaired stuff

lfitzger (Oct 6, 2008 7:43:29 PM)
I love my large flat screen

Jennifer-S (Oct 6, 2008 7:43:33 PM)
it can read things to me

Jennifer-S (Oct 6, 2008 7:43:38 PM)
21"

Jennifer-S (Oct 6, 2008 7:43:54 PM)
rectangular rather than square

lfitzger (Oct 6, 2008 7:43:57 PM)
I think that is what mine is

lfitzger (Oct 6, 2008 7:44:20 PM)
Mine is reg. as well. Only problem is that it means moving mouse futher

Jennifer-S (Oct 6, 2008 7:44:26 PM)
the trackball thingy has a special base for carpul tunnel patients

Jennifer-S (Oct 6, 2008 7:45:02 PM)
i can raise the text wihtout it going off screen

lfitzger (Oct 6, 2008 7:45:10 PM)
Super. I thought of looking at a mouse option. I'm going to ask OT at clinic next week. I do love my optical mouse

Jennifer-S (Oct 6, 2008 7:45:24 PM)
the other programs help me type on forms and let me raise them up too

lfitzger (Oct 6, 2008 7:45:37 PM)
I can put the screen further away )for me) and I like that

Jennifer-S (Oct 6, 2008 7:45:39 PM)
this one has a gle pad

Jennifer-S (Oct 6, 2008 7:45:49 PM)
i need mine close

lfitzger (Oct 6, 2008 7:45:54 PM)
That sounds good

Jennifer-S (Oct 6, 2008 7:46:09 PM)
thats why i'm putting up with the job

lfitzger (Oct 6, 2008 7:46:11 PM)
Now that I have my new lenses

Jennifer-S (Oct 6, 2008 7:46:17 PM)
thats good

Jennifer-S (Oct 6, 2008 7:46:27 PM)
i get my new rx this month

lfitzger (Oct 6, 2008 7:46:28 PM)
Before that I was sitting on top of the screen

Jennifer-S (Oct 6, 2008 7:47:04 PM)
the laptop will be a great help too. i can use it in bed or away from home

lfitzger (Oct 6, 2008 7:47:05 PM)
Mine are almost twice the previous strength, so I had a reason to not be able to read

lfitzger (Oct 6, 2008 7:47:30 PM)
I love my laptop, although I don't use it as much as I could.

Jennifer-S (Oct 6, 2008 7:47:35 PM)
thats a big increase

lfitzger (Oct 6, 2008 7:48:02 PM)
That was in 9 months and I had to pay for them out of pocket which hurt

Jennifer-S (Oct 6, 2008 7:48:21 PM)
well i'm going to sign off soon. this isn't helping my eyes or my wrist

Jennifer-S (Oct 6, 2008 7:48:34 PM)
i can try later and see if anyone signs on

lfitzger (Oct 6, 2008 7:48:39 PM)
Not helping my neck either.

lfitzger (Oct 6, 2008 7:48:50 PM)
okay, I may try to do the same.

Jennifer-S (Oct 6, 2008 7:48:51 PM)
i can maybe call you tomorrow

lfitzger (Oct 6, 2008 7:48:57 PM)
Night!!!

Jennifer-S (Oct 6, 2008 7:49:02 PM)
nite nite

lfitzger (Oct 6, 2008 7:49:06 PM)
I'll be home.

lfitzger (Oct 6, 2008 7:49:09 PM)
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Jennifer-S (Oct 6, 2008 7:49:26 PM)
for eveyone who reads the transcript, have a great week and try to join us soon!!

Jennifer-S (Oct 6, 2008 7:49:34 PM)
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Jennifer-S (Oct 6, 2008 8:12:15 PM)
(This user has entered Mitochondrial Chat)

Jennifer-S (Oct 6, 2008 8:12:21 PM)
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emtdas (Oct 6, 2008 8:33:34 PM)
(This user has entered Mitochondrial Chat)

emtdas (Oct 6, 2008 8:34:22 PM)
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emtdas (Oct 6, 2008 8:37:04 PM)
(This user has entered Mitochondrial Chat)

Jennifer-S (Oct 6, 2008 8:46:48 PM)
(This user has entered Mitochondrial Chat)

Jennifer-S (Oct 6, 2008 8:47:01 PM)
hi emt, how are you?

emtdas (Oct 6, 2008 8:50:11 PM)
hi

emtdas (Oct 6, 2008 8:50:14 PM)
i am fine and you

Jennifer-S (Oct 6, 2008 8:50:58 PM)
ok...has anyone else been on in awhile? lf and i were on earlier but it was quiet

Jennifer-S (Oct 6, 2008 8:51:49 PM)
i need to remember to post something next week on the mito boards

emtdas (Oct 6, 2008 8:51:53 PM)
no i have been here a bit and no one

Jennifer-S (Oct 6, 2008 8:52:03 PM)
how are the girls?

emtdas (Oct 6, 2008 8:52:10 PM)
yep i will be back in the new home on monday and will chat from there

emtdas (Oct 6, 2008 8:52:16 PM)
i am at grandmas on dialup

Jennifer-S (Oct 6, 2008 8:52:32 PM)
i didn't know you were moving

emtdas (Oct 6, 2008 8:52:35 PM)
there doing great .. u heard about there gi battles and hospitalizations

emtdas (Oct 6, 2008 8:52:43 PM)
yep from md to pa

Jennifer-S (Oct 6, 2008 8:52:49 PM)
no i am way behind on mail

Jennifer-S (Oct 6, 2008 8:52:55 PM)
what part of pa?

emtdas (Oct 6, 2008 8:55:28 PM)
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Jennifer-S (Oct 6, 2008 8:57:18 PM)
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