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Friday, June 17, 2011

Stuck

Every now and then I forget that I can't drive. I am no longer struck by the oddness of gazing out the window and seeing only one car in our driveway. My 2007 Green Tea Honda CR-V, the first new car I ever bought,  no longer feels like mine when my dad is driving me home from dinner at my parents' house. I am used to scheduling appointments and errands around the availability of others. I even enjoy the freedom to have another glass of wine after dinner, because the responsibility of driving home never falls on my shoulders.

Then I am reminded. Like, the breath has been physically sucked from my lungs, I realize that I can't drive. Because, I can't see well enough to. As much as my vision has improved, it remains full of holes. Holes that blur the details. Details like distance, speed, the color of traffic lights, the name of street signs. Details that are somewhat important to heed while driving. Weeks may go by between these realizations, but every time it feels brand new. Like I've lost my sight all over again. I've gotten used to a lot over the last year.But I will never get used to this. 

Every little thing requires planning. Planning that doesn't always come naturally to me. Impulsivity and the need to plan are always colliding in my life. I want to be prepared, know what is going to happen next, predict my next move but I like the freedom to change my mind; to decide on a whim that I am going to do THIS instead. This internal conflict makes me, me.

Not driving is by far the hardest thing about losing my vision. I want to be able to take Emy to Mommy and Me classes, to the beach, to see my grandparents. I want to be able to call friends and arrange to meet for lunch in an hour, go to grocery store when I am inspired to cook a real meal for dinner. (a VERY rare occurrence, therefore one that shouldn't be discouraged), I want to be able to take my daughter to the doctor without my husband having to take the morning off work.

I want to be free.

Friday, June 10, 2011

Peace, Love, and Cupcakes

We celebrated Emeline's 1st Birthday yesterday with several of our closest friends and family. It was a memorable day and fun was had by all. Especially, Emy. I was fearful that she'd be overwhelmed by the noise, people, and general chaos that arises when you mix 15 adults and 9 kids in a small space.Once again, I found myself amazed at the adaptive skills of my daughter. Emy relished in the attention and completely held her own while playing with everyone. Several times throughout the afternon, I tried to take a few minutes to observe how she interacted with all the people who know and love her.
This party was about  more than just a kid's birthday party. It was a celebration of the love and strength our friends and family have given freely and unconditional over the last year. It was a celebration of surviving the last year. Not just my survival either, but everyone who journeyed with us, providing love and strength along the way. I can't make any predictions on what the future might hold nor can I speak for anyone other than myself but I believe unequivocally that we are in a far better place than we were a year ago. It was just as important to me to celebrate that as it was to celebrate the birthday girl.
A long-time friend of the family made amazing personalized decorations, cupcakes, and a small cake for Emy all around the theme - "Peace, Love, and Cupcakes." She is so creative and amazingly talented. She is available for hire, so let me know if you'd like her contact information. I have included some pictures of the event to show off her handy work as well as some of my favorites for the day. Thank you Erin for making our house look as festive as possible!









Thursday, June 9, 2011

Back in a Gown Again

As you may recall, back in April, I had an unexpected trip to the ER while residing in Kalamazoo. You can read about it in this post: A Drama Free Existence. Since that day, I have been undergoing "further investigation" since that time. "Further investigation" has consisted of appointments with my primary care physician, my internal medicine doc at U of M, and the gastro-intestinal specialist she referred me to. I met with this specialist, Dr. E.two-weeks ago and like every specialist I have encountered at U of M, found hr to be exceptionally qualified, compassionate, and knowledgeable.

Dr. E hypothesized that the semi-constant pain I feel is caused by "chronic pancreatitis." Basically, when someone has had a case of pancreatitis as severe as I had it can lead to permanent damage to the pancreas resulting in pain, often after eating. In order to confirm her hypothesis, an Upper GI Endoscopic Ultrasound would need to be performed. During an EUS a small, lighted tube, approximately the diameter of a finger, with a camera attached to the end, is inserted into to your esophagus in order to get detailed pictures of t digestive track and surrounding organs. In my case, Dr. E. was most interested in my pancreas. Twilight sedation is required for this procedure and the benefits of accurate diagnostic information highly outweigh the minimal risks associated with an EUS.

My EUS was yesterday. Tuesday night, I was a wreck. Every time I am faced with a diagnostic test or an appointment with a new doctor occurs all logic and reasoning goes out the window and is replaced with crazy, spiraling, worst-case scenario possibilities. Basically it comes down to this: I am TERRIFIED of getting sick again. The idea of hospitalization, intense pain, and the months and months of recovery I underwent sends me into a full on panic attack. Voluntarily going to the University Hospital, putting on a hospital gurney, having an IV put in, waking up in recovery to a worried looking husband; it is awfully difficult to get psyched up to endure these events once again. But I've been in pain. I am in pain. Sometimes so much so, that I have trouble sleeping and eating. Things that is kind of necessary for survival.  Or at least sanity. As little as I was looking forward to the EUS, I knew it was a necessity to gain information required to move forward.

Everything went very smoothly. Dr. E. is a pro and I felt safe by the precision her team ran the procedure room. She came and talked to me and Josh in the recovery room to present her initial findings. Apparently, there are nine criteria for "chronic pancreatitis" and I only meet 3 of the 9. Additionally, Dr. E. was pleasantly surprised at the overall appearance of my pancreas. The severity of my complications did relative minor damage overall. These are both good things. However, that means the causes of my abdominal pain and tenderness is still undiagnosed. Dr. E. wants to treat me with digestive enzymes. Hopefully, by taking enzymes prior to eating or drinking, I will suffer less. We'll meet again at the end of the summer to analyze the effectiveness.

All in all, I was reassured by this experience. It's nice to know that I am not in dire straits again. I've spent so much time in hospital gowns this year that reaching a steady level of health still seems a ways off. It's good to know that I might be closer than I think.