Thursday, May 26, 2011

It's a Wonderful Life

Good Morning all!  I guess maybe I shouldn't say things like "good morning", "good evening", etc. since you could be reading this at any time of day.  However, it's morning right now and I'm in a decent mood for a change so.... Good Morning!!!

I have not been feeling well since the fundraiser.  My pain has been worse and I have been more fatigued and weak.  My headaches are bothering me a lot more recently as well.  That is caused by both the POTS and the mito.  In POTS, they call it coat hanger pain, because it feels like someone is sticking the end of a wire hanger in the back of my head.  Okay, not really.  It's because the pain forms a coat hanger shape in the back of the head, shoulders, and upper back.  One of my favorite POTSy bloggers said recently that maybe she's being punished by mommie dearest for using wire hangers.  I second that!  I am this close (I'm holding my thumb and finger about 1/2 inch apart.  Trust me.  I am.  I swear!  Okay, you got me.  I didn't really do it.  But you get the point) to taking all of the wire hangers out of my house, just to see if it'll make me feel better.      
NO wire hangers... EVER!!!!
Since I don't have enough health problems, I decided to develop another one.  You know, I don't have enough excitement in my life.  (My eyes hurt from rolling them right now)  This one is a little bit more personal.  However, what the hell do I have to hide?  I won't go into details.  I promise.  I have developed uterine prolapse and rectocele; or pelvic prolapse.  They call it pelvic prolapse because usually more than one organ falls.  Pelvic prolapse is when the muscles in the pelvis are weak for one reason or another.  It usually occurs after menopause because the lack of estrogen in the body causes the muscles to weaken.  Sometimes it can be caused by surgery or child birth.  However, in my case, it was caused by the weakening of my muscles due to mitochondrial disease.

Here is a link to information about pelvic organ prolapse...

There are different stages of prolapse from 1 through 4.  My rectocele is a 4 and uterine prolapse is a 2.  The ultimate solution is surgery.  Especially since mine is at an advanced stage.  However, since I am a very high risk surgical candidate, that is not much of an option for me.  If it was life threatening, or could be if I didn't have surgery, then, obviously, I would have the surgery.   But, it's not.  So, instead, I just get to deal with it.  I am going to try pelvic floor physical therapy, but if that doesn't work, then I just have to live with my parts falling out.  Fun!!! 

On another, more pleasant, note, I have ordered my chair.  A guy came a couple of weeks ago and brought a two chairs for me to test drive.  However, I only tried one.  I had already talked to him on the phone about a chair I found online.  I had asked him if he recommended any other chairs because I had just done a little research and he knows all about different types of chairs.  He said that the one I picked would be a great fit for me.  It turns out that it was.  I loved it. 
I can't wait to use it!  It'll be SO great to be able to be independent when I go places instead of relying on someone else to push me in my manual wheelchair.  Here's a picture of it and a link to more information about the wheelchair.
Permobil - C300 Wheelchair
Unfortunately, it'll take 6 to 8 weeks to get it.  So, once again, I'm counting down the days for something I'm waiting for.  However, this time it's for something good; not a doctor's appointment or something.

Because the sale was so successful, we have raised enough money to go to the UMDF symposium in Chicago.  My husband, mom, oldest daughter, and I are all going.  We will be driving there as it's only an 8 hour drive.  We will be driving up there on Thursday and back on Sunday.  Unfortunately, I will not have my chair by then.  I should be able to rent a scooter, however.  I am really looking forward to it.  I really want to learn as much as possible about this disease as well as talk to other people dealing with it on a day to day basis.

Well, I have more to say.  Don't I always?  You know, I always wonder why my two daughters never stop talking.  Hmmmmm....  You think maybe they got it from me?  So, like I was saying... I have more to say, but I'm getting tired.  I will talk about the other things next time.

Much Love!!!

Tuesday, May 10, 2011

Success! and other thoughts about fundraisers

First off, I want to apologize for the delay in posting.  I know a lot of people are wanting to know how the Garage and Bake Sale went.  Amazingly, I have been pretty busy since the sale.  Busy, that is, in mito terms.  In other words, I have been using my spoons on other things and have not had any left over to post on my blog.

So, to answer everyone's question... The sale was a huge success!!!  I am so happy.  We reached AND exceeded our goal.  We will have enough money for the chair I want as well as our trip to Chicago for the United Mitochondrial Disease Foundation symposium in June. 

We had a great turnout for the sale.  The weather was wonderful.  As my husband has pointed out, we haven't had 3 great weather days this spring yet, let alone 3 in a row.  It was not to hot, not too cold, and we didn't have a lick of rain.  I am so thankful for that as I'm sure it really helped with our great turnout.  I also received multiple donations via this website, check, and cash.  We made over $2K at the sale alone!!!!

I could not have done it without all of your help!  I am SO thankful for everyone who donated.  That includes everyone who donated money, baked goods, stuff to sell in the garage sale, and their time to help with the sale.  We had so much stuff to sell in the sale that we could barely find a place to put everything.  We had LOTS of clothes, furniture, home decor, tons of toys, 5 lawnmowers (which all sold, thanks to my hubby), electronics, and a bunch of brand new items as well.  In addition to that, we had lots of yummy baked goods that sold fast!  We had sold them all by Saturday morning.  We also had a lot of great people who helped with the sale.  My oldest daughter, Kylie, even stayed home from school on Thursday to help, and she was a HUGE help.  I was so proud of how hard she worked.  We could not have done it without everyone's help! 


Something that has been on my mind a lot, and has completely amazed me, is who has helped and who hasn't.  There are so many people that I have never met or only met once or twice who helped.  I was so amazed that some of my friends from my past came out of the woodwork to help.  A short story...  I was resting in the house for awhile during the sale (as I had to do quite often).  My good friend, who was helping run the sale, came in and told me that my friend, Cory, was there.  My response was, "I don't have a friend named Cory".  My husband then came in and told me his last name and I was completely shocked!  Cory is an old friend of mine who I haven't seen since high school or maybe a year after.  That was 14 years ago!  He was on leave from the military and made it a point to come out to the sale to see me and make a donation.  That was so awesome.  The wife of another good friend from high school also did a lot to help.  She posted the flyer at her company (which is large), drove 30 minutes one day to donate baked goods, and then drove out again 2 days later to buy some stuff at the sale as well as make a monetary donation.  There is another story of someone helping out in a huge way that I would love to tell you, but I can't.  But I will just say, I was speechless.

I don't even have the right words to say how lucky I am, how good I feel, how happy I am, etc. because of everyone's generosity.  I do not deserve all of this!  There are so many people out there who need help.  I am so grateful.

As much as I hate to go to something negative now, I'm going to.  After all, this is the place I go to vent.  So I wouldn't be me if I didn't also post my negative feelings as well as my positive ones.  We all know I'm not the overly positive "Polly Anna" type. (Hi, Staci!)  As I was totally amazed at all of the generous help, I was also amazed at the lack of help from some.  It has shocked me that people who I've never met could do so much, when some family and friends don't help at all.  It's just interesting to me.  When going through tough times, isn't it family and friends who are supposed to be there more than anyone?  I am learning that that's not always the case.  There are some family members and friends who didn't do anything.  That hurt.  But, you know, it's a learning experience. 

Now, don't get me wrong.  The good SOOOO outweighs the bad.  I allowed myself to be upset for a few hours one night.  Then, I was done.  Yes, it's still in the back of my mind (obviously, or I wouldn't be posting it).  However, I am NOT letting it get me down.  I know who my true friends are.  I know which family members to rely on when I need someone.

So, to those of you who helped make the sale a huge success, I will say it again.  THANK YOU SO MUCH!!!  Words can not express how grateful I am.

Much love!