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.

Sunday, April 10, 2011

Moving on

Well, it's been awhile since I've posted.  In case you're wondering, I'm still alive.  I didn't go jump off a cliff after my last overly depressing post.  In fact, I am doing much better.

Today I got some excellent news for a change.  It's been awhile since I've known what really good news feels like.  Granted, I was relieved when I finally got a diagnosis.  However, that may have taken a huge weight off of my shoulders, but it was far from good news.  So did you want to know what the good news is?  I didn't think so.

But I'll tell you anyway, because I want to.  This morning my husband came in and woke me up at 7am.  For the old Robin, that was not early.  However, for the mito Robin, who doesn't sleep well and usually doesn't fall asleep until 12 or 1am, that's very early.  BUT... I was okay with it because he woke me up to tell me that I had a large amount of money deposited in my account yesterday!

I was approved for social security disability income (ssdi)!!!!!!!!!!!!!  Hale-fucking-lejah!  That's my version of the religious song "Hallelujah".

So not only does this news lift a HUGE weight off of mine and my husband's shoulders, but it is excellent news.  And, to make it even better, they paid me back pay.  That's why there was a large deposit made to my account. (I had given them my info so I could use direct deposit if I was approved.)  Since ssdi is still no where near what I was making prior to becoming sick, the back pay will help us tremendously with whatever bills we still need to pay after my husband's paycheck and ssdi.

I am so freaking happy!  I think I deserve to celebrate.  What do you think?  I think that I deserve a massage.  Sound good?  Yeah, that's what I thought.

I would think that that would be all the good that will come to us for a year or more.  (I hate using two of the same word right next to each other in a sentence.  It looks funny, but it's right.)  However, I was actually happy about something else yesterday.  I know, right?  Two things to be happy about in two days!  It's just not possible!  You would think so, at least, based on my recent history.

In order to tell you the other good thing, though, I will have to start with the typical bad.  Sorry, just bear with me (or, if you're my husband reading this, then bare with me).  Anyway...  My pain has been unbearable (there's that word again) over the last week.  I don't know what triggered it, but I have been having excruciatingly sharp pains in my left leg and right chest.    I called my pain management doctor to make an appt.  They couldn't get me in for 2 weeks!  That would be fine if I was just going in for my standard appointment, but I needed to get in quickly because nothing I was doing was helping my pain.

I decided to call someone else.  My mom recommended someone to me and I got in within 2 days of calling to make the appointment.  So that's part of the good news.  When I went in to my appointment on Wednesday, I was overwhelmingly pleased.  This doctor actually knows what mitochondrial disease is!  And not just from learning about it in medical school in 1918.  He has actually done a study, or presentation, or something on the effects of Propofol in patients with mitochondrial disease.  Not only is he knowledgeable, but he's kind as well.  Double bonus!  He changed my pain medication to something sustained release (slowly released into the blood stream over time), in addition to something for breakthrough pain.  He is going to start me on a different medication to help me with my myoclonic twitches as well (muscle jerking/twitching).  Those have been really bothering me, especially at night when I can't sleep because of them.   And instead of throwing a prescription at me and saying "come back in 3 months", he discussed many different options for almost an hour and told me to come back in 2 weeks so he can assess how I'm doing with the new medications and change something if need be.  After being in excruciating pain for the last week or more (I've had a lot of pain for a long time, but this last week has been awful), I'm so happy to have hope that someone is going to help me get it under control.

You might notice some things on my blog changing over the upcoming days/weeks.  I am currently working on a few changes.  I am adding some additional pages for more information about what mitochondrial disease is, how you can help, and others.  They are currently under construction, but please visit those other pages on occasion as I will be updating them soon.

I will also be getting back to you all soon as I am in the beginning stages of organizing a fundraiser.  I would love your help!  More information coming soon.

Spring is here!  Get outside!  I have.  :o)