For now, I keep thinking about how my skin reacts to tape, glue, steri strips etc...I cannot use anything on my skin...it welts up and rashes immediately...then blisters for weeks...I have little scars from every steri strip ever used on me...how am I going to be able to keep a flang on?????
I cannot even imagine what will happen to me if I cannot. What would I do then????
Even Dr C said that in my case he would rather rebuild the k pouch on the left side than try to make me live with an ileo...he knows my body/skin/guts so well.
I am having that 'pain' again...the one where when I sit down suddenly (like on the sofa where you let yourself 'drop') there is a deep reverberating pain low down where you guys have your j pouches.
It usually means that my k pouch is down again. Or at least hanging strangely.
If so, then I can still have it pulled up...I am good with celioscopic surgery...Not so good with open surgery...(I am just be grasping at straws here)
My life (what is left of it) is divided into 2 parts...work...where I bounce around like an 18yr old for 9-12hrs/day (plus 3hrs of public transportation!!!)...I never sit, eat or take a break...I never let the pain in...I ignore it...I live in a bubble of joy & laughter...I love what I do...(how in goodness gracious sake will I be able to do that with a leaky ileo?????)
And home is where I let the pain in. Where I allow myself to feel it. Feels like a baseball bat attacked my lower back and kidneys...like over-tight guitar strings are being pulled inside of me...Can I add the pain and fear of an end ileo to all of this? I seriously do not know.
I work with roudy and randy 18-25yr old athletes (mostly guys)...they respect me (mostly) and listen to me but how will I keep their respect if I am leaking down my leg or my bag bursts? How will I survive the subway rides daily?
(fear of a burst bag and 35 smartphones taking pictures of me in that condition and posting them on the web!!!!)
Those are my fears... Will I have to quit my job? I cannot change it...I am finally on the verge of getting tenure....I cannot quit or show weakness now...or my professional life is over...and I cannot live without my job or salary.
I am not ready to give up.
Darn it.
Sharon