Oct 10, 2012

The Tide Rolls Again

It has been months since I have been here, feeling very lost the last several months since Sam's passing. I felt so pulled to her today and by the thoughts of others with this disease that I needed to check in. Since Sam passed away, most of us have found, or attempted to find other outlets with our time that was so use to being filled with Sam's needs and friendship. I poured myself into school, completing a two year associates in just three semesters, never have taken a break from school. I have this burning desire to get done and get out there and start sharing our knowledge with other people and hopefully have the opportunity to be the nurse that helps someone else with this rare disease to see through in comfort to the end. I so miss Sam still, I know I always will, but today has been particularly hard.

It is the time of year that my plants will have to be brought in, some to be taken completely down and seeded or bulbs set aside for next year. This is a particularly hard time because alot of my plants were from Sam, the pots they rest in, they too were hers. Since her remains were taken to Florida, where she is from, there is no place here to physically go to to talk to her, so my porch and my flower pot garden was my connection to her. Now I am uncertain where my peace will come from for the winter. I know she is all around us, I know she is always in our hearts, but for some reason I just need something physical to feel she is still with me. Something I can touch, something that keeps my thoughts grounded.

To add to this time, Sam's daughter finally went for her genetic testing. We know that there is no way to know if Shy Dragers (MSA) is hereditary at this time, but there were other underlying syndromes that started Sam's journey down the MSA road. One of the primary ones was Antiphospholipid Syndrome (Hughes Syndrome). There is some debate as to if the Warfrin used in the treatment of this blood antibody disease could be linked to MSA. Long story short, Jasmine has come back positive with having Hughes Syndrome. Sam's beautiful, strong, ambitious daughter....could it be possible that lightening could strike so tragically, twice in one family? Needless to say, the fear of the unknown is playing so hard in our minds today. Thank goodness, Sam's specialist, the one that we can find to know the most about MSA, happens to be the one that Jazzy's doctor has referred her to. Now we play the waiting game, for time to speak to him of what is to come or what could possibly be. I feel that a monster needs two legs to stand on, right now this one only has one, we can knock him over! Time again to grab the bull by the horns and jump off that cliff...I know that bull will hit the ground first because he weighs more and he will break our fall.

I hope that the rest of you are all well. I think I am ready to come back now and share more of the journey as I learn more from you all as well as put more answers together for ourselves to be able to share with you. God bless all, hope you all have a wonderful night!

-Kris

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