Monday, April 18, 2011

Garage and Bake Sale

As I'm sure many of you have noticed, I have made a few changes to the website.  One of the changes you will see above.  I have created multiple pages on my website.  Please browse around and take a look.  It is still a work in progress.

Another, very important thing I would like to point out, is that I am holding a fundraiser.  On April 28th, 29th, and 30th, I am having a combination garage and bake sale.  I have decided to do this to help with the cost of a power wheelchair and a lift in order to put the chair in our SUV.  I am also trying to plan a trip to Chicago for the umdf (united mitochondrial disease foundation) symposium.  I will discuss this further below.

Now that I have a diagnosis and have grieved over such diagnosis, I am ready to move on.  In order to do so, I need to make some changes in my life.  I need to make these changes to accommodate the new, mito, me. The new, mito me needs a wheelchair in order to "walk" long distances.  I would love to be able to go to more of my daughters' soccer games, go on walks with them like I used to, and do other things that I haven't been able to do because it requires too much walking.  Of course, too much walking is anything longer than 50 to 100 feet, and that's on a good day.  My husband has taken the girls to many outings in which I had to stay home.

I also want to be more independent.   I am such an independent person as it is, so this last year and a half has been a real struggle.  I absolutely HATE having to rely on others for things.  Someone in the family is letting me use a standard wheelchair that they had just sitting around.  However, I don't have the energy in my legs or my arms.  So, in order to use that chair, someone has to push me.  I want to be able to get around on my own.  For instance, my husband, the girls and I went to Powell Gardens (a place where you can walk and admire lakes, ponds, statues, and lots of flowers).  We borrowed a wheelchair from there.  However, someone was having to push me while also keeping an eye on our two kids.  Luckily, grandma went with us which was a big help.  Unfortunately though, we can't drag grandma to all of our family outings so that we have an extra pair of hands.  I can't wait to return to Powell Gardens and drive myself around while the hubby takes care of the kids. 

As I mentioned above, I am planning a trip to Chicago for the UMDF mitochondrial disease symposium.  My mom, my husband, and I are all planning on attending.  And because she has begged me to go to Mayo in March of '09 and Atlanta in December and March of this year, we are going to try to take my 12 year old daughter as well.  This is an event that is held every year for physicians and researchers wanting to share their knowledge and recent findings about mitochondrial disease with others.  It is also a place where people with mitochondrial disease, or caretakers of those people, can meet with others going through the same thing.  There will be an opportunity to meet with mitochondrial disease specialists one on one, as well as a group panel called "Ask the mito doc."  There will be a networking room for people to connect with others in their area dealing with living life with mitochondrial disease.  The cost of the symposium is $400 for my husband and I.  There will, of course, be the costs of the trip itself: gas, hotel, food, etc.
Here are a couple of links with information about the symposium, in case you're interested....
Symposium home page
What to expect at the symposium

I would really like to attend this symposium in order to meet others dealing with this disease as well as talk to specialists who know more than the doctors I've seen up to this point.  Of course, that wouldn't take much since most of my docs are completely clueless about it all.  For that reason, the money raised above and beyond the cost of a wheelchair will go toward the costs of the trip to Chicago to learn more about mitochondrial disease.

Please click on the section at the top of the screen that says "How you can help. Garage/bake sale info" for more information about the sale.

1 comment:

Bibliotekaren said...

So glad to hear your family plans to go to the UMDF Symposium. And, I too only have a manual chair -- kind of hard to ask folks to push me around. Am in the process of selling my hard-to-access condo and see a scooter or such in my future.

Did you tap into MDA at all for the power chair? I've heard they have a pretty good DME assistance program.

Hope your garage and bake sale are a rousing success.