Posted by: kherome | April 14, 2010

The latest!

Despite 3 months of perscription vitamin D, my levels refuse to come up. So it’s another 3 months of treatment and a recheck for me.

Lately I’ve had problems with some wicked dizziness. Last night, I walked right into the corner of a wall…talk about embarassing! I hate the sick, headachey, dizzy feeling.

Next month we’ll be taking the first vacation we’ve had in ages. I am pretty excited, and hoping I will be feeling ok enough to enjoy myself. We’ll be spending a week in Hawaii. I’ve contacted the airline and arranged for a disability accomodation so hopefully the flight will be as painless as possible!

I have an appointment to see Dr. Tinkle! Sadly, his first available is in September! Dr. T: http://www.amazon.com/Issues-Management-Joint-Hypermobility-Ehlers-Danlos/dp/0981836011/ref=sr_1_1?ie=UTF8&s=books&qid=1271265344&sr=8-1

My holter results came back, I had some PVCs and PACs. The doc said that if I become symptomatic to the point where it’s affecting my daily life we’ll have to look at medications or ablation surgery. Neither option thrills me.

I’m desperate to avoid ending up in a wheelchair. While I realize, logically, that I’ll probably need one at some point, I just can’t stomach the idea. At my most recent doctors appointment I was trying to describe my pain and symptoms (again). My doctor, while sympathetic to my plight, informed me that it’s past time for me to start seriously considering leaving work and applying for disability. I can’t even begin to think about that though. I’ve heard from so many others that the process is so long and hard and frustrating. I don’t feel like I am physically or mentally ready for something like that. I’m certainly not financially ready for the loss of my income. That’s terrifying. So I ended up leaving my appointment with little to help me, other than a new handicapped parking permit…which made me sad as well. Yet another concrete reminder that I am disabled.

So, next month I see a new Rheumatologist, and in September Dr. T!

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