Look ma! No delay!

Wednesday, July 2, 2008 (See! I CAN post an entry before midnight...I knew I could)

A new nurse came today; our *regular* nurse went out on medical leave a couple months ago and our interim nurse turned out to be very familiar with HKPP. That was a serious blessing while it lasted. Now we have a new nurse who discretely informed me that my case is being reviewed for termination. That was inevitable, but we were hoping to get as much help from them as possible for as long as possible before we would have to embrace the now *old* routine of being alone in the medical skirmish. The nurse is very kind and understanding, but there is very little she can offer in the way of specialized care and awareness of my disease, if I’m going to be real about it.

The last couple days have provided only a few hours of “normalcy” as I once new it, meaning that for a few hours both days, I have had enough strength and constitution to accomplish a couple things off my list of waiting tasks. Only a few hours out of 48…I think I mention recently that this past Saturday and Sunday included attacks each day, noting that Saturday’s attack, though not triggered by carb spike or potassium drop, was especially nasty and lasted several hours. Those ones hurt the most, aside from the pain that results from ER visits which can be quite painful as well.

Anyway, today has included exhaustion, shortness of breath, chest pain, cold & clammy skin, sweating intensities and intermittent brain fog.

Last night, after posting another blog entry, I went to bed but this time I hooked my CPAP machine to the oxygen compressor so that I would receive oxygen while I slept. I slept straight through until 10:15 a.m. and woke up much more alert. Another plus in sleeping with the oxygen on is that the compressor provides a regular pulsing white noise which both CC and I respond well to when going to sleep. Sometimes the complete quiet can become a point of concentration, in that it is so quiet that it is hard to get to sleep while hearing every little night noise within and outside the house, if that makes sense…well, it makes sense to me anyway.

I don’t know if I included this point in a previous post, but I am now on oxygen all the time, while at home, on the computer, in the car, etc. On the one hand, that concerns me but on the other, it helps me, so I am striving to keep the focus that it is a helpful thing and not focus on the obvious progression of symptoms…again, I’m not ignoring, I’m just trying not to obsess which is my tendency now when I become concerned or scared.

I got an email from a young lady today who is having to contend with the same types of symptoms I am and is not yet diagnosed correctly, if I had an opinion on the matter…not that I have an opinion…I seldom ever do…not.

Anyway, you can be praying for her and for her speedy recoveries from these debilitating symptoms.

Time to get some food from downstairs; it’s 5:08 PM

-peace