day to day

I have learned that this “new normal” that I am living is really a day to day process.  I never have a clue as to how I will feel.  I may have a few good days, then a few bad days. I think the hardest part of recovering from the loss of my stomach is the ability to plan anything.

I am learning to be prepared for anything at anytime.  Combining this with all of my other illnesses and the uncertainties caused by them as well leads to some crazy times.  It’s not a bad life, it is a different life.  And with change there are always up and downs.

Sometimes I feel like superwoman and other times I feel like the biggest burden on every single person in my life.  I keep trying to make a schedule for myself and have realized that it is pretty impossible for me to follow any kind of schedule.

I eat as much as possible whenever possible.  The hardest part for me with eating at this point is trying to eat when I have absolutely no appetite.  The victory is the times when I eat and something actually tastes good and I can clean my plate!  My body cannot tolerate dairy, sugar or carbohydrates well at all.  I either get violently ill, severe diarrhea, racing heart rate, drastic blood sugar readings, sweating, faintness…the list goes on.  I avoid these things as much as possible especially sugar, but occasionally I just have to try again.  A glutton for punishment.

I finally received my continuous glucose monitor!  It is a small pain in the ass, but so nice to be alerted that my blood sugar is falling before it is down in the 20s or 30s!  Due to having such severe hypoglycemia so often, my body no longer recognized the symptoms until I was dangerously low.  This is going to be a great tool to avoid those times.

My fibromyalgia has been at its all time worse lately, but slowing getting a little better.  My breathing is always back and forth but holding steady for the moment.  I still have a lot of pain from my incision and was told that I have post thoracotomy syndrome and started on yet another medication to try and help with that…so far I have not noticed any improvement, but I will give it more time.

The plates and screws in my ribs continue to bother me on a daily basis.  I think that if I had some fat on my body to “cushion” that area it might not be so painful.  I am maintaining my weight and did actually gain about 7 pounds, but have now lost those 7 pounds.

My loose sagging skin (gag)….seems like this shouldn’t even be an issue for me with all the other stuff I have going on, but I HATE it and the fact that I cannot do anything about it.  Yes, I could have surgery but I am not a good candidate for surgery.  Unless it is emergent its just not going to happen.  So I am trying to accept this grossness and make fun of it and laugh instead of cry!

 

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