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Jul 05-11

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Happy 4th
My new urologist at Hershey spoke to me about options after interpreting my recent test results. The recommendations had different levels of treatment. After his breaking down what could be a possibility, I agreed to an additional procedure where he will try to stimulate the nerves. A form of sacral nerve stimulation. I’ve had so much pain and dysfunction with pain in this area that I almost don’t want to risk having this create more. Although it could help the pain. This disease seems to have either invaded or affected almost ever organ. I’m not exactly sure how to proceed in these newly diagnosed areas and I’m not even sure if I’m a candidate until I’m have more testing. This doctor was rattling off so many terms and it put me on information overload. If I’m a good candidate,  this surgeon could place a pacemaker-type device at the base of my spine that might stimulate the nerves, help with pain, and perhaps down the road change the way my bladder empties. At the beginning of August, I will have my first procedure where they will see if stimulation to this part of the spinal cord is even possible. The specialist will also attempt to plug and unplug the SPCatheter to see if the stim will also effect how the organ work and helps me control inflammatory and nerve disease.  I have two Hershey appointments this summer and a few with my LVHN physicians so perhaps these will help keep me on track and help make decisions.
On a similar note, I’ve had some additional nursing visits because I started with a fever, aches, chills and fatigue. Friday night, the nurse got in touch with the doctor on call. The dr called around 8pm and really wanted me to come in to perhaps to see if I needed IV antibiotics. I finally agreed for another weekend nurse visit and she started an antibiotic. I have been feeling a bit  better but today my temp was still there closer to low grade but I’m on an antibiotic 4x a day. Hopefully it will kick in.
Jenn did so well gaining weight but recently lost more than her gain. Some from her oral surgery but it’s such a struggle for her to resume her daily diet. Being back at work helps her enjoy eating with co-workers. She drinks high protein Boost in between meals. She eats but apparently not enough for her metabolism, so she dropped to about 90 lbs. In a week, Jenn and Geoff will meet a neurologist at Good Shepherd Home as part of the MDA Clinic. I’m glad this opportunity is available. I’m hoping we gain more info on Myotonic MD and how they can keep their strength up. Brittany will be attending later this month. Praying for healing and help and hope. Each sibling is affected differently, uniquely but also alike. 
Like you, we are trying to tolerate this heat. This summer I like to go out on my deck in the evening. We just celebrated Brittany’s 26th birthday this past week and had an indoor picnic yesterday.
Blessings and love to you all.


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