Re: Do you ever feel alone ?

[Guest guest]

,

I am a long ways from you, but feel very close to you in my heart right now. There are many MANY days when i feel completely alone, like i'm the Lone Ranger. I often feel like i am fighting the mito battle for my kids when no one else here "gets it". Even my docs, whom i love, don't really understand mito and they surely don't comprehend the life/death decisions that we as mito moms and dads make on an every day basis. The specialists are in Denver here, and again i think they are great....but we see them once or twice a year. so again, we really are alone for many of the decisions.

I would encourage you to keep trying to get your support group together. I have to tell you that our little group of online support here has been my life line many many many times. When i lived in So Cal, we had a great group out there, too...it was hard to go to the meetings, but when they were over i had the overwhelming sense of relief that there was truly a group of people who understood my anguish, my sadness, my fear of the unknown. They lived it too. It was horrible to have to belong to the group (not because of who they were but because of WHY we were there) but at the same time, it was such a relief that the group existed.

Anyway, this is a long post and i'm sorry. Just know that i'm sending my love to you, and giving you a big cyber hug from Colorado where it's presently snowing like a banshee.

ruth

mom to Mitch (10 next week) and Lexi (7 yesterday--wow!) both mito affected and my treasures

[Guest guest]

Dear :

I am so sorry for Kierra's troubles. It is so heartbreaking. I live

clear across the US from you, but wanted to say how sorry I am that

Kierra and your whole family have to deal with all of this. My boys

have different issues, but I understand the despair and the never

ending routine of doctors and always something more going wrong.

Please feel a hug of support from Washington State.

Cindy (mom to Seth, 13, and Ben, 8 - both mito)

>

> I have posted here many times before. My daughter Kierra is 9 and

> has all 5 complexes and metabolic disorder. She is still on TPN

via

> mediport and had another g tube placed on the 24th of Feb. I just

> feel so lost with her. She is up and down all the time. She had 2

> weeks were I almost forgot that she was sick and out of no where

she

> just turned around and started not eatting much, drinking, and

weak,

> just same ole stuff. I get so sick of calling the doctors. How do

> you all do this. Kierra has not been in school this year. So we

> are together 24/7. She will be 10 in Aug. and holds on to about

> 54.lbs. She wants to be normal, play and do what all the other

kids

> do. But she just can't. I would love to start a local support

> group where parents could meet and talk. I live in Houston Pa.

> About 25 miles outside of Pittsburgh. If anyone in this group is

> close, please contact me. I need someone who understands.

> Thank you

>

[Guest guest]

,

I am very familiar wtih Houston as my father is from Canonsburg and my mom from Washington/Amity. It is a small world. I live in Columbus, OH, now, but every few months or so get over to WashPA to see my grandparents. Email me offline (mkovalci@...) if you'd like to get together or chat on the phone. I understand your frustration entirely.

KK

Do you ever feel alone ?

I have posted here many times before. My daughter Kierra is 9 and has all 5 complexes and metabolic disorder. She is still on TPN via mediport and had another g tube placed on the 24th of Feb. I just feel so lost with her. She is up and down all the time. She had 2 weeks were I almost forgot that she was sick and out of no where she just turned around and started not eatting much, drinking, and weak, just same ole stuff. I get so sick of calling the doctors. How do you all do this. Kierra has not been in school this year. So we are together 24/7. She will be 10 in Aug. and holds on to about 54.lbs. She wants to be normal, play and do what all the other kids do. But she just can't. I would love to start a local support group where parents could meet and talk. I live in Houston Pa. About 25 miles outside of Pittsburgh. If anyone in this group is close, please contact me. I need someone who understands. Thank youPlease contact mito-owner with any problems or questions.

[Guest guest]

I totally understand what you are talking about when you speak of the

up and down roller coaster. We go through that constantly. There are those

wonderful times where both girls are doing fine and other than the tube

feedings, therapies, and medications, they seem to be doing great...and then

suddenly one (or both) of them gets ill or just starts being real fatigued.

Zipporrah seems to be the one scaring us the most these past few months with

her increased fatigue issues, tons of viral attacks, etc. Currently we are

fighting to keep her hydrated and riding the fence on whether she needs to

be the hospital. She has been bouncing temps between 99 degrees all the way

up to 103 degrees, heart rates up to 180's, blood pressure low at 75 over 37

(which is low for her indicating dehydration issues), major fatigue-mostly

sleeping or cuddling all day, etc. One minute I think we can handle it on

our own and the next I am contemplating IV needs. Part of me just hates the

local ER's knowing they will not understand how to treat her and their

underestimating the importance of hydration (because in their eyes after

all-a virus is JUST a virus). Sorry to go on here. I just wanted to write

to you letting you know we understand your frustrations and agree that this

and other forms of support groups are absolutely a Godsend! Hope you can

get one going in your area.

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see

a photo look into what Mito looks like

Darla: mommy to

Asenath (5) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomia, SID, global delays, asthma, cyclic vomiting,

bladder issues, wheelchair for distances, eye issues, autistic behaviors,

gastric emptying issues...

Zipporrah (17 months) Mito, strokes, neuro-motor planning dys., SID, GERD,

dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive

phlegm, asthma, trach issues, aberrant subclavian artery, disautonomia,

hypertonicity, migraines, possible seizures, dumping syndrome, iron

deficiency...

Luke (16)migraines, sensory issues, & some evidence of SLE's...

Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4),

Marquis (3) Likely FAS, behavioral issues, SID...

Joey (15 months) with hydrocephalus, dysgenesis of the corpus callosum,

encephalomalacia & leukomalacia, possible arachnoid cyst, 100% G-tube fed,

GERD, left hemiplegia (arm), immobile...

(15 months) dev. delays, SID, right hemiparesis issues...

Do you ever feel alone ?

>

>

> I have posted here many times before. My daughter Kierra is 9 and

> has all 5 complexes and metabolic disorder. She is still on TPN via

> mediport and had another g tube placed on the 24th of Feb. I just

> feel so lost with her. She is up and down all the time. She had 2

> weeks were I almost forgot that she was sick and out of no where she

> just turned around and started not eatting much, drinking, and weak,

> just same ole stuff. I get so sick of calling the doctors. How do

> you all do this. Kierra has not been in school this year. So we

> are together 24/7. She will be 10 in Aug. and holds on to about

> 54.lbs. She wants to be normal, play and do what all the other kids

> do. But she just can't. I would love to start a local support

> group where parents could meet and talk. I live in Houston Pa.

> About 25 miles outside of Pittsburgh. If anyone in this group is

> close, please contact me. I need someone who understands.

> Thank you

>

>

>

>

>

>

>

> Please contact mito-owner with any problems or questions.

>

[Guest guest]

,

While my situation is different from yours I can relate to what you are feeling. This disease can be very frustrating and hard to deal with. I'm glad to see you are looking for support. I started a support group years ago that kind of fizzled because of the limited amount of mito patients in the area. Some other groups have had more luck so it is possible. My suggestion would be to contact your local MDA chapter or another local health related organization and see if they have any support groups in your area. They won't be mito specific but you will find that you share many of the same frustrations as the other parents and patients who are dealing with different diseases. They are great places to vent and find support. MDA also has a mito chat every Monday night. Come visit when you have the time. Its a great group and has been a great help to me. Good luck with finding a group and remember to take care of yourself.

Hugs............ S

[Guest guest]

Hi ,

I live in Berwick, PA, which is about 4.5 hours from you. Its in the North Eastern part of PA. I am sorry I am not closer as I would also love to have someone to get together with just to share/talk/vent. My daughter is 8 years old. She has a GJ tube and is J tube fed. Up until May of last year she was on TPN and was in the hospital more then she was home. Its a very stressful situation. Thankfully, we are going through a good time right now. Granted, we still have all the usual issues she deals with but it is good, none the less right now.

If you are at all familiar with the area I live and willing to make the trip, I would be more then happy to meet up. Feel free to email me at denise.lappan@...

-- Do you ever feel alone ?

I have posted here many times before. My daughter Kierra is 9 and has all 5 complexes and metabolic disorder. She is still on TPN via mediport and had another g tube placed on the 24th of Feb. I just feel so lost with her. She is up and down all the time. She had 2 weeks were I almost forgot that she was sick and out of no where she just turned around and started not eatting much, drinking, and weak, just same ole stuff. I get so sick of calling the doctors. How do you all do this. Kierra has not been in school this year. So we are together 24/7. She will be 10 in Aug. and holds on to about 54.lbs. She wants to be normal, play and do what all the other kids do. But she just can't. I would love to start a local support group where parents could meet and talk. I live in Houston Pa. About 25 miles outside of Pittsburgh. If anyone in this group is close, please contact me. I need someone who understands. Thank youPlease contact mito-owner with any problems or questions.

[Guest guest]

It is tough dealing with this disease. I often feel very alone as well. I look back to when I was working at a job I loved and had a social life. Now I am a stay at home mom, with no social life or any real friends (who are not related to me). I would never have it any other way, though. Since I stopped working Grace has become much more stable and that is worth more than anything. My other children also benefit from having me home as well. I often think of getting a very part time job, and work when my husband is home, but this is really not practical as well since he works so much.

As far as support groups go, you may want to ask at your local MDA. I know the one in my area has a meeting every month or so. There are also alot of UMDF local chapters that have meetings regularly.

Best wishes

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