"This illness is to fatigue,
what a match is to a nuclear bomb.
It's an absurd mischaracterization!"
~Laura Hillenbrand

November 18, 2008

Fortunately ... Unfortunately


Do you remember that children's book "Fortunately, Unfortunately" ? This little boy goes through his day with "Fortunately" - a good thing.... "unfortunately"... a bad thing. I don't remember the whole story, but I do remember...

Unfortunately, I had to jump out of the plane.... Fortunately, I had on a parachute... Unfortunately, it had a hole in it.....

And on an on!

These past two weeks I've been living this... let me give you a few examples!

Fortunately - the doctor I saw in NY had one more idea to help with my severe fatigue.
Unfortunately - it meant I had to give myself a shot everyday.

Fortunately - it doesn't really hurt and I can do it!
Unfortunately - my whole family runs when they see me preparing for the next injection.

Fortunately - IT IS WORKING!!!! Whoooo Hoooo!!!! I've had the best week and half I've had in years! I'm not healed, but my brain is more awake, I feel more like myself and I even have less fatigue!
Unfortunately - I had to have a sleep study in the middle of that time - and I sure didn't sleep well... which has thrown me backwards a bit.

Fortunately - The sleep center is such a high quality one, I got to sleep on a "Sleep Number" bed and it was as comfortable as possible with wires glued all over your head and face and things up your nose and on your finger :-) (yes... I did play with the numbers LOL)
Unfortunately - The sleep study showed that I have sleep apnea - a common development in dysautonomia.

Fortunately - It is very MILD sleep apnea.
Unfortunately - I have to try a CPAP mask - and I HATE things that go over my nose.

Fortunately - I have a daughter who works with ordering home health care items and she showed me that there are some great options that only go IN your nose - not over it!
Unfortunately - I have to go back this week for another sleep study to calibrate the CPAP. (more guk in my hair)

Fortunately - It's not til later this week - so I've had a lot of fun painting this week!!!
Unfortunately - I had a sudden and severe flare of my gasteoparesis... the delayed gastric emptying that causes stomach pain and nausea.

Fortunately - I have medications to deal with this.
Unfortunately - it's a really bad one and the meds are only lessening the pain and nausea, NOT taking them away.

Fortunately - Just as I was tempted to despair - I received a very special gift from one of my husband's co-workers. I was reminded that God remembers me and cares about me even when life takes it's down turns.

"Can a mother forget the baby at her breast and have no compassion on the child she has borne? Though she may forget, I will not forget you!
See, I have engraved you on the palms of my hands;
your walls are ever before me.
~Isaiah 49:15-16

2 comments:

  1. What a great post!

    So I will say Yay! for all your new "fortunatelies" and grrr! for all the "unforuntatelies." What shot are you taking?

    The verse at the end is one of my favorites, and also, I have been enjoying "First Steps" on your music queue. :)
    ((Big Hugs))

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  2. what a neat way to write an entry:-) and for better or for worse, welcome to the apnea club?! sounds like you already have some good consultation services for mask advice, but if you'd like to know what's worked for me (& not worked) let me know as i tried several of the smaller/ less-obstructive mask varieties before settling on the one that works best for me. love ya!

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