WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Friday, January 27, 2012

Mito, the value of Internet Support.

Today I was emailing back and forth with a lady on one of my "community-freecycle" groups. We both recognized the value of those emails we send out on a occasion to our group where we share a peek into each others lives. She is a Senior without a lot of family and since losing much of her hearing has felt very isolated. for us it has been Abby needing to be home or trying to keep her safe from germs. Either way, we both find days where we are terribly lonely.

Online support for Mito Families is essential. Many families have either major energy,immune, or severe disease where getting out to a social function or even just a trip to the Dr. becomes nearly impossible.

I have had a couple good chuckles about the UMDF walks.. Ironic that they would pick a "walk" and a near all day event that at least for us is absolutely impossible to participate in!! We tried to go to a UMDF meeting, but by the time Abby was brushed and dressed and the drive down there, she was too tired to go in!! LOL So, the thought of being at a function for a walk, is simply insane to us!

Okay, so I know that not all families with Mito are as handicapped by fatigue as we are, but still you have to figure at least 50 percent of families so in need of support could never rally the energy to attend a meeting and certainly not a walk!! If I asked friends and family to help me fundraise, they would expect that we would be participating right? Then also add in the fact that often even the healthiest among the Mito world frequently encounter crashes,flares and unexpected illness, probably less the 25 percent of Mito families can participate.

Over the last year I have been lucky to find a few ladies to chatter on the phone with- those phone calls are GOLDEN! To simply hear another parent who is struggling with any of the variables of Mito is magic to me. I know my oldest and dearest friends MUST be exhausted with 15 years of my need to talk through Abby's issues- and I know I have lost quite a few friends and family that just could not handle it- I have mourned each loss as I NEED the human connection.

MitoAction does have a schedule of online conference calls, and I think I will give them a try. I have stayed away from any of the UMDF activities because of energy and the feeling of elitism that we have encountered in Houston(and I am hearing from other families they are getting that same feeling of elitism and alienation all across the Country). So I have been leery of trying MitoAction. However, MitoAction seems to understand that there is a huge population of Mito Families that are in serious need of support, of a community. I am so impressed with the fact that they are listening to those of us who don't have the Energy to Walk for a cure!

I have been a little disturbed over the last year when I find articles about different fundraiser activities for Mito. The ones that get the most attention are the ones that involve the most Money and Energy. Two things that many in the Mito Community do not have the means to participate in. I have also heard and witnessed a disconnect between those who run those functions and the rest of us. It saddens me that so many Mito patients who would benefit from a friendly call or email are ignored, brushed off, because many involved in these activities only include those who will either connect them to people of means or have financial or Energy means. Where does that leave the rest of us? We do want to help, and we need support too!

On the other hand, they are only doing what every other disease association is forced to do. Like breast cancer awareness walks that cost thousands to participate in,and the disease associations that beg or pay celebraties to be ombudsmen for their cause. I know it is just the way the world works- but while they are raising money and attending balls and celebrity functions, don't forget that we want to help too! Can you post a live feed of a fancy dinner so we feel like we are there too? Can you send us all a ribbon to wear so we can spread awareness everywhere we do manage to go? Can you help us start a phone tree? Or help us figure out which family Drs. in our community can handle a Mito patient? can you call the ER's and teach them about Mito? Can you have a Mito representative that works as an advocate for a Mito patient when CPS is called? I know you need the funds you raise for research, but when you prescribe supplements we cannot afford, or we need medical equipment our insurance won't pay, or you prescribe PT,OT our insurance won't cover, none of the Associations help with that...

The other day I posted that the UMDF is setting up a table for Mito Awareness in partnership with Texas Childrens and Texas protective(family services)services(CPS).. Right now in Houston not many folks trust or think kindly of CPS in the Mito world or in any other struggling families- they have a history this last couple years of making rash and destructive decisions that were simply wrong. I kind of scratched my head wondering which Mito family would volunteer to help them? Okay, so a little paranoid, but seriously don't these representatives who set this stuff up think about this stuff? I suspect one of the board members or families with adult children will end up volunteering- would a Houstonian with an underage child who has either suffered at the hands of CPS(either out of CPS's ignorance or corruption)or heard of another family suffering actually sit there and help them?

This is where our online support is essential. I can go to a forum any time of day or night and find another Mito patient who has been there done that! I have made friends... I have been able to help other Mito patients, I have been able to spread awareness. The internet is my life line to the world- as it is for thousands of us- help us find a way to use that to get the word out there! We do make a difference just teaching people about Mito, but it sure would feel good if we were thanked the way the Associations thank someone who just writes a big check. Don't forget who it is you were trying to help- don't lose your course and turn working to help people into only thinking about yourself or your Association as a money maker- Keep it real!


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