01.17.2005
09:45 PM - 11:15 PM EDT
MITOchat / MitochondrialChat

hoodlum -- {welcome hoodlum}
m-english -- {welcome m-english}
hoodlum -- hi m-english, how are you tonight?
m-english -- pretty good how are you?
hoodlum -- I think I'm coming down with something, and I'm cold, but otherwise okay :o)
m-english -- yes i think this is the time of year we all catch something
hoodlum -- chat is slow tonight...is there anything I can help you with?
hoodlum -- the weather has changed so dramatically in the past few days. Hopefully this colder stuff will kill the germies
m-english -- no it is quiet here right now and i liked the chats so much last week i thought i would come and see what was going on this week
hoodlum -- I forget is it your son or a daughter that has sma?
m-english -- yes that would help
m-english -- my daughter
hoodlum -- mito chat is usually pretty busy. It may pick up after a while...
m-english -- yeah
hoodlum -- okay, now I remember :o) How is she today?
m-english -- she is good my mom is keeping her and my other daughter tonight
hoodlum -- oic, nice to have a break once in a while :o)
hoodlum -- Do you work outside the home m-english?
m-english -- yes it is nice to get a little break
m-english -- i did but i don't anymore
jennifer-s -- {welcome jennifer-s}
hoodlum -- oic, what did you do?
hoodlum -- Hi jennifer, long time no see...how are you?
jennifer-s -- hi hood, hi m
jennifer-s -- i'm doing pretty well, and you?
hoodlum -- think I'm getting something, and I'm cold, but otherwise okay...
hoodlum -- can I come visit?
donna-k -- {welcome donna-k}
jennifer-s -- i'm getting over a sinus infection and its chilly here too but I kinda like it
jennifer-s -- any time hood
hoodlum -- hi donna, how are you and your clan today?
jennifer-s -- hi donna
m-english -- i was a Pharmaceutical Representative
hoodlum -- thanks jennifer
hoodlum -- cool job m-english...
jennifer-s -- hanna is visiting in april. someone finally tood me up on my offer
hoodlum -- I bet you guys will have a blast jennifer :o0
jennifer-s -- where are you from english?
m-english -- i really liked it but after my daughter was born i was not able to take her to daycare so i'm a stay at home mom now
donna-k -- hi hood hi jennifer
hoodlum -- I used to love to travel, but it has gotten very difficult in recent years...can't do it with all the medical equipment..:o(
m-english -- Colorado
donna-k -- not to bad my back is really bothering me again today
hoodlum -- that is the most important job in the world m-english!
jennifer-s -- i've always wanted to go to colorado
hoodlum -- sorry to hear that donna. I wish there was an easy fix for it...
jennifer-s -- donna i feel your pain...mine is killing me too
m-english -- yes it has really been a blessing to be able to spend all this time with my kids
donna-k -- how is everyone tonight it is very cold here in cleveland
bug- -- {welcome bug-}
jennifer-s -- how old are your kids english?
jennifer-s -- hey bug!
hoodlum -- very cold here too donna...
hoodlum -- hey bug.....
bug- -- hi guys :0)
donna-k -- hi bug how the heck are you
m-english -- 5 and 7 months
jennifer-s -- its in the 40s here too
donna-k -- where are you jennifer
bug- -- i'm ok donna how about yourself ?
jennifer-s -- great ages
jennifer-s -- florida...even if it doesn't seem like it
m-english -- yes it is
hoodlum -- jennifer are you any where near Leesburg?
m-english -- my oldest always wants to help with the baby she is like a little mommy
donna-k -- 40's are cold but it is 17 here my furnace has been running all day just about
hoodlum -- that is great english...I'm sure she will always look out for her little sister.
jennifer-s -- not too far...they just had a plane crash there hood
donna-k -- not bad bug though my back is really bad again
hoodlum -- Oh no! my best friend is wintering there...it wasn't near a trailer park was it?
m-english -- yes she will
jennifer-s -- no, noone but the pilots were injured
donna-k -- english do both of your children have mito
hoodlum -- phew.....
m-english -- no my little one has SMA
jennifer-s -- i have never been there but its in the tampa region
hoodlum -- I'm sorry about the pilots though...was it a commuter plane?
jennifer-s -- some kind of private plane
donna-k -- I am sorry english
jennifer-s -- so how was everyones holiday...i've been away for so long
m-english -- thank you donna
hoodlum -- bummer, I will have to call my friend later and see what is up...she is a good story teller.
donna-k -- bug is it cold out your way
bug- -- donna have you ever done PT for your back ?
hoodlum -- Jennifer I want to hear about your birth family...
donna-k -- yes
jennifer-s -- we had a great meet...they are alot like me
hoodlum -- speaking of PT...bug...how's it going and how's your ankle?
donna-k -- and i went to a chiropractor
hoodlum -- that is neat jennifer. Are you planning future get togethers?
donna-k -- I had a work related back injury about 7 years ago
jennifer-s -- definitely...they might come down in feb.
hoodlum -- Wow, you might as well turn your house into a bed and breakfast..LOL
jennifer-s -- i have so much family now
jennifer-s -- I love company lol
donna-k -- same here jennifer
jennifer-s -- i think there is mito in the family too
hoodlum -- that is a good feeling huh jennifer?
jennifer-s -- sure is
jennifer-s -- i have a cousin in atlanta who has droopy eyelids and strokes
hoodlum -- WOW...dxd?
jennifer-s -- no, i don't know her diagnosis...she is kinda estranged from the family but they have promised to update her
jennifer-s -- i'm worried about my little sister and my nephew
bug- -- hood thanks for asking...i'm seeing the doc tomorrow
hoodlum -- brb have to let doggie out....silly doggie...
donna-k -- bug how did the hydration thing go
donna-k -- lol hoodlum
jennifer-s -- oooh love hydration
jennifer-s -- bug was your ankle broken?
jennifer-s -- i am so behind
hoodlum -- I'm back, but will likely have a pupscicle if my sister doesn't come home soon.
bug- -- donna no more problems with hydration thankfully
jennifer-s -- poor puppy
m-english -- {goodbye m-english}
hoodlum -- bug, glad you are seeing the doc tomorrow is this about your back or your ankle?
bug- -- jenn i'm not sure yet...gotta see the doc
hoodlum -- poor puppy...it is her choice.....
m-english -- {welcome m-english}
bug- -- ankle hood...my doc was such a sweetheart that he called me tonight because he saw me on the schedule and got worried about me
donna-k -- I can not find the article that Dr. C wrote that talks about hydration
hoodlum -- awww
hoodlum -- wb english
donna-k -- wb english did you get the boot
m-english -- yes i sure did
jennifer-s -- yuck...i have the best ankle surgeon here...you can see him when you visit lol
bug- -- thanks jenn :)
hoodlum -- donna it is the article about acute illnesses and mitochondrial diseases...that is the title or pretty close to it. You could always call the UMDF and have them send you a hard copy if you can't find it on the site.
hoodlum -- bug, do you think it is broken?
hoodlum -- The article itself doesn't say a lot donna, just that the protocol for acute illnesses should include hydration with d-5 or d-10
jennifer-s -- they gave me sodium bicarb last time too but it might have been for the kidneys
hoodlum -- I bet it was jennifer
hoodlum -- It is also in the Think Mitochondria Book available on the UMDF website
bug- -- hood i would bet it's a hairline fracture of my fibula just like they suspected the first time around
jennifer-s -- i am having issues with swollen lymph nodes...had a breast cancer scare
donna-k -- thank hood lum but I thought someone posted an article that Dr. Cwrote on hydration on the oldies
hoodlum -- brb... pupscicle wants to come in and melt..lol
jennifer-s -- ooh bug stay off of it
donna-k -- sre you ok jennifer
hoodlum -- I don't think there is an article specifically about hydration on MO donna, but I will check...hang on...
jennifer-s -- not totally...very scary...there is shadowing in my left breast and funky lymph nodes but they don't know why
donna-k -- lol hood what kind of pup
jennifer-s -- my mom and grandma had breast cancer
hoodlum -- Yikes bug....would you please ask the doc if he thinks it may be time for MAFO support?
bug- -- jenn it's fine...i have to do my daily exercise or my body is so stiff i can hardly get out of bed
hoodlum -- choc. lab (12 yo) stubborn and cranky
jennifer-s -- wear a brace then bug
bug- -- hood i have a brace that he had me order...i just didn't think i needed to wear it all the time
donna-k -- riley loves the snow and being a schnauzer he has some long hair and the snow just sticks he comes in with big snowballs stuck on him
bug- -- just like last time, i can jog on it i just have very little lateral stability
jennifer-s -- my fracture rubbed together until it all shattered and it took 14 yrs and 3 surgeries to fix it
bug- -- it's weird
hoodlum -- guess it is time to rethink that bug...:o)
donna-k -- sorry hood i do remember hershey
bug- -- ugh jenn that sounds terrible...i'm so sorry you had to go through all of that
hoodlum -- donna....I'm certain it is the Management of Acute Illnesses article. and that is also on the MO website
hoodlum -- yuck jenn...ankles can be a real problem...
bug- -- i don't know hood, i jogged a couple of miles on it tonight and it seems ok painwise
jennifer-s -- its perfect now...the ankle of a 10 yr old...just don't make the same mistake i did and ignore it
bug- -- if i lay on my side in bed the pain is severe, but otherwise it's fine
hoodlum -- IMHO bug, you push too hard sometimes and are probably doing more damage...(speaking from experience...)
bug- -- your probably right
jennifer-s -- bug i climbed the steps of lincoln's boyhood home and danced on mine...trust me you can do damage
bug- -- like i told my doc, i keep thinking i can cure myself
bug- -- he said "didn't you try that and it didn't really work for you did it ?"
jennifer-s -- jogging a couple of miles...i have never been able to do that
bug- -- he cracks me up
jennifer-s -- i'm wagging my finger at you right now bug
jennifer-s -- lol
hoodlum -- me too bug....lol
bug- -- jenn i know your right :0(
bug- -- lol
hoodlum -- m-english..feel free to jump in anytime...we get carried away sometimes.
jennifer-s -- you can do plenty of exercises while relaxing your ankle
jennifer-s -- yah english...but is used to us picking on her
jennifer-s -- bug i mean lol
bug- -- i have been, but i need aerobic exercise too
jennifer-s -- put a brace on and ride a bike
hoodlum -- MAFO's extended my ability to walk by almost 3 years bug and that was with a torn achilles...I'm thankful I had that time.
hoodlum -- lol jennifer, I like the but
jennifer-s -- where is alice tonight?
bug- -- that's great hood
jennifer-s -- yah bug is now butt lol
m-english -- it's ok I try to jump in but it gets a little hard at times
bug- -- are you looking at my butt ? lol
hoodlum -- gram has been super busy with SHHH stuff and will be through the middle of February
hoodlum -- NO WAY bug, I'm not that kind of girl...
jennifer-s -- no i called you one lol
bug- -- whew !
hoodlum -- although from my perspective sitting in my wheelchair I do see a lot of butts :o)
hoodlum -- LOL
bug- -- oh that's ok jenn...you wouldn't be the first
jennifer-s -- my bad typing lol
jennifer-s -- i noticed that too hood lol
jennifer-s -- not always a good sight lol
bug- -- i have my two medical students coming over for dinner tomorrow...they're really great kids
hoodlum -- no, not always (especially at the mall)
jennifer-s -- thats cool bug...teach them early
bug- -- i love the fact that i can corrupt them before they start seeing real patients
bug- -- yeah they are 1st years
hoodlum -- that sounds neat bug are you introducing them to mito and other weird illnesses?
bug- -- don't i have them all hood ? lol
jennifer-s -- i always do that when i go to columbia pres. they are a teaching hospital
bug- -- i've been stressing to them that they don't necessarily need to know about all the rare diseases, just keep an open mind to the possibility that someone could have one
hoodlum -- I think between us all there is a pretty good chance those first years would see everything they are told they'd never see...LOL
bug- -- definately
jennifer-s -- lol we are special
jennifer-s -- my neuro has brought up schleoderma as a possibility for me but I don't see how that is
bug- -- we are able to talk rather informally here at the house, so we've all gotten to know each other pretty well
m-english -- {goodbye m-english}
bug- -- i get to hear the dirt about med school too
hoodlum -- hmmm that is strange jenn...I think I remember someone else on MO who was either dxd with it or has a family member dxd with it.
jennifer-s -- thats great
bug- -- jenn do you have any of the antibodies ?
jennifer-s -- oh i hope we didn't scare her off...come back english
hoodlum -- I think that is really great bug. I wish I was closer to Hershey so I could do the same.
hoodlum -- when do you start classes bug, and how many are you taking this first semester?
jennifer-s -- i need to go through testing
bug- -- i started last week and love the class and my prof. she's a former RN with an MBA and MA...just the one class
jennifer-s -- i didn't know you were going back to school bug...thats great
bug- -- i've got a ton of reading though
hoodlum -- Great. I have high hopes in you bug...you will be the one to fix us all...lol
m-english -- {welcome m-english}
jennifer-s -- i miss school
bug- -- thanks jenn...i'm quite excited
jennifer-s -- wb english
m-english -- {goodbye m-english}
bug- -- hood, you'll be the first to know when i come up with the cure
hoodlum -- wb english...you are going to be bruised tomorrow....
hoodlum -- if I'm still around..if not I'll leave instructions...lol
bug- -- but since i'm only taking one class at a time and i'm still a sophomore, it could be awhile...lol
jennifer-s -- hey hood...i found a great picture of merril...i need to send it to you
bug- -- i'm a redshirt sophomore...lol
hoodlum -- Please do jenn...when my old computer died I lost all the pictures I had of her on it.
jennifer-s -- what major bug?
bug- -- molecular biology
jennifer-s -- ok hood i have a few
jennifer-s -- oh wow...you are smarter than me bug
bug- -- i doubt it jenn
jennifer-s -- i miss merril so much...she was a great lady
bug- -- i didn't know her :0(
hoodlum -- Yes she was indeed :o)
jennifer-s -- science and math arent my strong subjects
jennifer-s -- she was one of the early leaders of our group and she helped so many
bug- -- they weren't mine before either, but about 10 years ago i made a commitment to learn math well and it payed off
bug- -- how long ago did she pass ?
hoodlum -- March 15 2001
jennifer-s -- 3yrs hood?
hoodlum -- It'll be 4 years this March
jennifer-s -- bug we had scooter races with her at the cleveland conference...so funny
bug- -- sad
hoodlum -- very....
bug- -- that's cool jenn, sounds like fun
jennifer-s -- it is sad but i like to remember her and the other angels with happy thoughts
bug- -- so hood what's your health status lately ?
bug- -- amen to that jenn !
donna-k -- I think i saw a picture of her before on the umdf websight if I am not mistaken
bug- -- i thought you left us donna
bug- -- you're awfully quiet tonight
hoodlum -- yes, with the tribute I wrote.
jennifer-s -- i never saw that hood
hoodlum -- okie dokie. I think my tube may have migrated again, but I'm avoiding calling the doc because I don't want an admission right now.
hoodlum -- it is in the personal stories section jenn
jennifer-s -- uh oh now we have to yell at hood for not taking care of herself...the finger is wagging
hoodlum -- hahaha
donna-k -- sorry bug I have been trying to find an article
bug- -- hood, YOU'RE wagging your finger AT ME ???? with jenn and YOU aren't taking care of yourself ????
bug- -- grrrrr
bug- -- don't make me come over there hood and smack you upside the head !
donna-k -- is that bad hood
donna-k -- lol bug
jennifer-s -- i'm being good this week...no fingers at me nah nah
bug- -- jenn, i'll save my finger wagging for when you do something really bad ok ?
hoodlum -- hmmmm....I figure as long as my blood work looks okay I don't need exposed to all the nasty viruses that are there now.
jennifer-s -- my lips...er fingers...are sealed
bug- -- hood, you'd be yelling at me right now if i had that attitude
bug- -- can't you at least call the doc ?
jennifer-s -- what does migrated mean in this case?
bug- -- no cooties over the telephone
hoodlum -- U are right....I have to call the GI doc tomorrow anyway as Medicare isn't paying for my protein supplement anymore and we have to figure something out...so I will fess up to her then.
bug- -- moved to an undesireable location jenn
hoodlum -- means the tube is moving or has moved from the small intestines to the stomach....the last time it got kinked and was headed up my esophogus...
bug- -- thanks hood, i can sleep now
mississippi -- {welcome mississippi}
hoodlum -- U R welcome...lol
jennifer-s -- medicaid is denying my heart medication too...they should be ashamed of themselves
hoodlum -- glad it is that easy bug..
jennifer-s -- welcome miss
hoodlum -- hi mississippi
jennifer-s -- oh hood that sounds bad
bug- -- hi miss
hoodlum -- i agree jenn
mississippi -- Hello everyone!
bug- -- jenn it is bad and that's why she needs to take care of it
hoodlum -- chat will automatically close in about 15 mins.
hoodlum -- could be worse bug...lol
jennifer-s -- no fun
hoodlum -- hi miss...do you or someone you know have a mito disease?
jennifer-s -- granted we are missing Super Nanny lol
mississippi -- I have recently diagnosed-this past month-mito dz.
hoodlum -- sorry to hear that miss. How/where were you dxd?
jennifer-s -- do you know about mitoldies or the mito groups miss?
kahea -- {welcome kahea}
jennifer-s -- hi kahea
hoodlum -- kahea, nice to see you again...:o)
kahea -- hello...almost slept through this weeks chat
jennifer-s -- i did that last week kahea lol
hoodlum -- make us jealous kahea what is the weather in Hawaii?
jennifer-s -- oooh hawaii...so lucky
bug- -- miss where did you go for the diagnosis ?
kahea -- nice sunny lots of snow on the mountains
mississippi -- After 6 months of sxs, some of which were severe, my neurologist was finally able to convince someone to do a muscle bx.
donna-k -- jennifer medicaid is also denying my sons adivan they said they will only pay for the generic which he has tried and does not work they even denied the doctor I said you would rather pay a $500.00 copay every few weeks than you would a $30.00 copay every 3 months
kahea -- has anyone ever had pain to the soles of there feet?
hoodlum -- who did the bx miss?
donna-k -- hi kahea
jennifer-s -- dumb huh donna...mine is a generic
kahea -- hello donna
jennifer-s -- kahea i have foot pain all the time
bug- -- hood :0)
kahea -- on the bottom of your feet? jennifer
mississippi -- There is a guy here who reads the biopsy, but he only sees peds and has little experience in adults-I'm 45.
hoodlum -- where are you from miss?
jennifer-s -- yes kahea, esp the arch and heel
donna-k -- jennifer if he was not on the brand and the once a month hydration he would be in the hospital
kahea -- do you know what the cause is? Jennifer
jennifer-s -- it costs them more in the long run
bug- -- miss is that a university hospital ?
hoodlum -- could it be neuropathy kahea?
mississippi -- Jackson, MS. Anybody got a rec. for a great mito doc. who is really good clinically. I'm willing to go just about anywhere in the US.
hoodlum -- where are you maybe we can tailor our recommendations for you there are several good mito docs nationwide.
kahea -- I am not sure hood
jennifer-s -- i go to columbia presbyterian in nyc miss
bug- -- miss have you tried an MDA clinic ?
kahea -- I have a little problem right now
mississippi -- Jenn.-Who do you see and have you been pleased?
jennifer-s -- kahea mine is part fallen arches and just mito i guess...the tendons teense up
kahea -- I was beat upat work and injured my back..The insurance co. is not paying me because they say my pain is r/t mito
jennifer-s -- Dr Hirano at the mda clinic and hes great
hoodlum -- oh kahea I'm so sorry to hear this.
mississippi -- I haven't tried a MDA clinic. How do I go about getting into one?
bug- -- bummer kahea
kahea -- lost the conversation again
bug- -- you can run a search on the MDA site and it will tell you the closest ones
hoodlum -- Your neuro can refer you miss or you can find a clinic on the MDA website by typing in your zipcode. It will give you contact information
hoodlum -- did you get us back kahea?
bug- -- before we have to go, hugs to all and to all a good night !
kahea -- yes
hoodlum -- TO you too bug...let us know how things go tomorrow. I'll be thinking of you.
jennifer-s -- ditto from me...bug take care of that foot
hoodlum -- to the rest....a happy, healthy and peaceful week!
jennifer-s -- hood go to the drs!!!
bug- -- ty
bug- -- you too hood
hoodlum -- only if necessary jenn...
bug- -- grrrr