Tuesday, June 3, 2014

Starting a New Chapter Part 2

I'm in the process of getting all of the testing that Dr K ordered. For those who are interested here are the labs that I had done (these are only blood and urine.) Please excuse the quality of the picture as it's a (bad) cell phone picture.
These are all pretty basic labs that could have been ordered at any time during my long illness. They may or may not show anything, but if they do, they could be the first step in a mitochondrial disease diagnosis. I received the buccal swab test kit in the mail a few day ago and I'm in the process of getting everything ready to do the test. I had to get ice packs and some sort of cooler to ship the tests in as they have to be kept cold. I plan on doing the test in the morning, then taking it straight to UPS to have it shipped overnight. 

I'm working on getting everything covered by my insurance. I had originally faxed a request for coverage, but apparently it wasn't handled correctly. When I called to see about coverage for the testing, I asked about getting my visit with Dr K covered. Surprisingly, within a few days I had an approval!! I was told by the insurance rep on the phone that if they covered the office visit, they most likely would cover the out of network lab testing also. These are the specialized mito testing, not the basic lab work. I still need to meet my deductible, but it will be nice if the visit and these tests can go towards that. I can't turn in a claim until I get all of the notes from my office visit, which I should (hopefully) get late this week or next. I'm really anxious to see the summary of my visit.

I started back on the Mestinon for my autonomic nervous system dysfunction. I do think it's helping some. I'm not up to the full dose that she wants me on as I like to ramp up when I start meds. I seem to be able to regulate my body temperature a bit better. Dr K also prescribed a pain reliving compounding cream that I have yet to fill. It's a bit expensive and I kind of wanted to wait until we got through the next month or so; hopefully, we will have some money left after the wedding, summer tuition, etc...

It took over a week, but I'm finally feeling a bit better. I think I'm still not where I was before we went to Atlanta, but I'm not where I was when I was at my worst. I hope I'm making sense. It seems as though each time I have a bad spell, it takes a bit longer to get back to normal. Our son's wedding is less than two weeks away and I have appointments for my hair and nails. Tomorrow, we are going over to where the reception is being held to finalize things. Saturday is my future daughter in law's bridal shower. I'm really looking forward to that! Between all of these things I have to find time to rest. I'm making some Crockpot meals that will make good leftovers, so that the week of the wedding I'll have very little cooking to do. I enjoy cooking, but it is one thing that really takes a lot out of me. That and shopping. 

I feel as if I need to give an update on Elizabeth here, too. I told her she could do a guest blog posting, but she didn't seem too interested. Anyway, she's been back on the steriods for several week now and she's not seeing any improvement. She said the last time she was on them, she'd already noticed some improvement after being on them for a week or so. She called her GI doc and he wanted her to have some testing done again. Luckily, these were not invasive and could be handled by the lab. I know she's hoping he will start her on something else. She's so tired of feeling so bad. 

I'm about to nod off, so I think it's time for me to go to bed. Here's to a pain free, good nights sleep to everyone!!








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