Pity Party For One

Here I am wallowing in my Pity Party For One. I have many Pity Parties For One. Sometimes they last a day, sometimes an hour, sometimes five minutes. My longest Pity Party For One was a couple of months, which actually happened to be this past summer. It was a dreadful summer where I was focused on all the things I couldn't do or couldn't enjoy. I do try to put on that brave smile for those watching!

As most of you know, but for those of you who are just stumbling upon my blog, I have been watching my body deteriorate for the last ten years from a disease known as FacioScapuloHumeral Muscular Dystrophy (fsh muscular dystrophy). Since the birth of my children I have watched this disease kick into over drive and become aggressive causing my body to have extreme weakness and stripping me of my independence. There are so many things this disease has taken and continues to take away from me. Each year the decline in mobility increases and last year my doctor gave such encouraging words like "I think it's time for a wheelchair". (Which I was given a prescription for in November of 2007 and finally decided to fill it in April 2008 and I have been fighting the insurance company ever since - because they say it's not for home use, but if they saw the size of my home they would see why! But insurance rants are for another blog post!)

It's the little things I miss like going downstairs to do laundry, going grocery shopping alone, going to the mall alone, cleaning my house properly (I don't think my house has been truly clean for a while now!) I miss being able to walk without worrying about falling every second. I miss getting up and down from a sitting position with a little grace and dignity (it honestly looks like I am in some circus act!) I miss running around with the kids and Matt. I miss "girls night out"-I think my newest circle of friends aren't quite comfortable or aren't quite sure how to help me with those kinds of outings. But I have family that is the same way so I don't blame them for not including me.

The latest invite for my Pity Party came from Matt, who informed me that Prague is not "Diana-friendly" (which means handicap friendly.) I was a little surprised because Quest Magazine (a monthly magazine from the MDA-muscular dystrophy association) listed Prague as one of the few accessible European countries. I guess I will scratch that destination off my list. That's the third scratch mark I've made on my list this year. Originally, we were going to try and see Counting Crows in either Phoenix or Portland. We were also going to try and go to Hawaii this fall or winter but that has also fallen through. And now I have scratched Prague off my list. It looks like the only destination for me is 'homebound!' I guess I will have to continue living vicariously through my world traveller, and through the blogs that I stalk (as long as they stop deleting said blogs!)

The thing about these Pity Parties is that I don't want them to last long enough that suddenly I have turned into a "Bitter Betty". I know we are suppose to endure to the end (or as I like to call it - suffer with a smile!) Some moments are so overwhelming that I need a Pity Party. I also know that even with this disease my life is so full of other blessings. I have so many things around me that I absolutely relish in. The most important reason I can't let these Pity Parties last is, I have a son who is already in a full fledged fight with this disease and he is only ten. At least I had twenty-two years of full mobility, where I was able to participate in sports, dance, and pep squad. I was able to have a normal life. This is something looking less and less likely for Jordan even this early in his life. I think he needs to see someone being a warrior through this and not a victim.

So I know it is time to stop dwelling and time to continue enduring! And the best thing to help me end this Pity Party and dry all those tears of sadness is a clip from something that makes me laugh so hard it brings tears of joy! Enjoy this clip from ELLEN! (*note to readers* I apologize for the inconvenience, but IT Lyte is on the other side of the globe and not here to show me how to attach the video correctly - but the video you want to select on the page my link takes you to is Friday, 10/17/08 Aw Snap! It is worth the effort!)