Thursday, November 24, 2011

I am thankful for....

Today im thankul for...

My Family including 2 parents who I love and who love me dearly. Who are there to help me when I need it, who take all the time off from work they need (sick days, personal days/FML) to be there for my many surgeries and procedures. Who visit me every night at the hospital when I have been in-patient which this year has been to many days and nights to count despite the hour drive one way generaly after they've each worked a full 8 hour day and in my Dad's case often when he has had to go in to work early. I am thankful for the many times this year my Dad has been able to leave work suddenly to take me to the ER and to his employers for letting both my parents take this time with little to no questions asked. Most of all im just thankful to have these 2, my Mom and Dad as MY parents - I dont think I could ask for better parents! They dont meddle, they dont try to rule my life (despite what I know is often alot of worry) and they treat me no different than my other healthy siblings of which I most appreciate. I am thankful they raised me to be so idependent and for instilling the ability to deal with the chaos that sometimes is.

I am thanikful for my sister who although like any siblings we have our disagreements I know is there and I can talk to her and I know she cares. Im thankiful for the beautiful, adorable nephew and niece she has given me and thankjful most of all she wants me to be a huge part of their lives!

I am thankful for my sister-in-law because I can truly talk to her about almost anything and although I rarely talk to people about how I feel with all this MPS stuff I know with Jenn I can vent and while she may not always understand it she listens and doesnt judge and I can talk to her and when with her we just have such a good time. Im thankful to have her and my sister because I dont think a person could ask for better sisters!

I am thankful for my brothers who although sometimes they frustrate me (my oldest and twin) I love them and I know they care in their own ways and I through them I have also been given a wonderfully beautiful couple nieces and another nephew all of whom I adore. I am thankful for being an Aunt several times over!

While this may sound cliche I am thankful for my apt and to know I always have a place to call home if I need it (my parents house). There's somethin to be said for a place of our own and I am incredibly thankful to be able to live on my own but there is also something to be said of always having the ability to rely on our childhood home if we need it!

This may sound a little odd but im thankful to have the cats outside my apt to take care of - Im thankful I have a Dad and brother who can build me shelters for the cats and that I also have a live trap compliments also of my Dad for when I can catch these cats and for the local humane society. On the fli;p side of this I am NOT thankful for people who abandon their cats like yesterdays garbage - no one person or animal deserves this cruelty. I am glad I can help these cats a little. There's something to be said of helpfing something otherwise abandoned!

I am thankful for Genzyme's willingness to take on this 'identifying un-met needs of Adult with MPS I' project as it is something ive been intersted in doing for a long time and I am thankful they've committed the people/resources they have for our population.

I am thankful for a promising new treatment for MPS I which although it would not replace ERT would benefit some of the areas of which I am most affected by MPS (CNS (brain/spine), Heart and joints. I am also thankful for the researchers who are invested in this disorder and genuinely interested in us their patietns lives and helping.

I am thankful for my faith and for my church and being able to be renewed in a sense each week at church. Also my Pastors who have visited each surgery and who care about how things are going.

Lastly I am very grateful for those providrs old and new on my team who go out of their way to help me and to help solve the complicated health issues I/we deal with. I am (not to exclude any providres but these deserve special thanks) especialy grateful to my Pain Mngmt dr who is invested not only in my pain care and treating the various aspects of my pain (neuropathic, joint/muscle) but who also is interested in my life in general and a cheerleader for what I do both with APF, with MPS I and with my life in general. I of course am thanikful to have found my neurosurgeon who while Pediatric trained is also interested in helping adults with complex shunt issues and for her interest in sharing what she knows, always making a way to make it seem understandable and for her ability to pick up on when I just dont seem right even at times when I dont quite realize it yet.
Thanki you to all these people and for all these things!

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