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My Potsy Life


Rachel

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Hi Friends,

I haven't gotten back to updating my last couple of topics, so here's one quick update for everything!

Swimming: I never was able to get back to the pool after I posted about swimming for exercise. :( Fatigue and heat have kept me away since that first week of swimming. Come fall I'm going to give it a try again at an indoor pool. I like swimming so much, and if there is any way I can get back in the water on a weekly basis, I'm going to do it!

Blurry vision: It has gotten better, but I do suffer from blurry vision more than I used to. There was a time last week when my husband and I were driving down the road in Nashville and I was seeing everything very clearly. Then all of a sudden the road signs were blurry. I had an appointment at Vandy, so I asked the doctor about this. He said that there haven't been any official studies done on dysautonomia and blurry vision, but that he has had many of his patients mention the same symptom. He believes it is connected to autonomic dysfunction since the ANS controls pupil dilation.

Vanderbilt: My trip to Vandy went well last week. Everyone at the hospital was so nice. I had the best tech for my testing, and Dr. Biaggioni's nurse was so sweet. Dr. Bioggini was very kind and knowledgeable. I didn't learn anything new, but I'm glad I went just to make sure that we haven't missed anything in the testing and treatment process.

Mitochondrial Disease: I've had some labwork come back abnormal, but not enough to make a firm diagnosis. Dr. Cohen is currently working on skin fibroblasts for mitochondrial dysfunction. He is waiting on that test result before deciding what to test next.

Moving: This one is new info, not an update, but yes, we are moving! I'm excited and nervous all at the same time. We've been living with my parents for the past year and a half. It has been necessary due in part to my health problems. I need a lot of assistance each day, plus help caring for my son. It has been wonderful to have my mom here most of the time to help me while Will is at work, but it is time to try to get out on our own again. We are moving to Kentucky so that my husband can get his Masters degree. He'll be going for an MDiv, which should take about 3 years. The school has been very understanding and willing to help us considering our unique circumstances.

One thing I'm excited about is the apartment we will be living in. A two bedroom handicap accessible apartment has opened up on campus just in time for us to move in! I'll have a handicap accessible shower, wide doorways, no stairs, and lower countertops in the kitchen. Horray!

We will be moving this Friday, so I'll be checking in on DINET, but probably won't be able to post much in the next few weeks. The move is and will be very tiring for me. We're going to have a lot of help from friends in the next few days/weeks, so I'll be okay. I will just be very tired!

Well, that wasn't as quick of an update as I had hoped. Oh well. :rolleyes:

Rachel

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hi rachel,

thanks for updating, i like to know how we all are doing! you have a lot going on and i wish you all the best before, during and after you've moved. it's great to have good friends helping you out. i hope the appartment will work out great for you!!

take care,

corina :rolleyes:

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Thanks for the update Rachel - I'm glad to hear that the big move will be into an adapted bungalow, how perfect is that? All the best for the move and getting settled in - don't try to do everything at once, okay? Look forwards to hearing from you when you have moved and opened a few boxes!

Take care,

Flop

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wow.. beeen thinking of you and wondering how you've been doing! you have lots going on..BIG HUGS TO YOU!!!!!!

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hope you're sleeping soundly in your new place! had you in my thoughts & prayers this week as you were getting ready, today as you moved, & will continue to as you settle in. take care of yourself the best you can in the midst of all of your business!

:P melissa

p.s. i would have driven down to unpack you myself if i were a healthy-fish (though i suppose i wouldn't have been on DINET if that were the case in which case i never would have met you, so....i suppose that train of thought doesn't work after all!)

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