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Thursday, February 2, 2012

wow, almost 2 months, almost a new person

I look back and I see I haven't posted for almost 2 months. These days, that's like a life time. I no sooner posted that I was having difficulties with my own pouch, with my own intestines, when I got a call from St. Louis that my daughter was really not feeling well in school.  She too suffers from UC.  She was having horrible pain, chills, fever, and couldn't stand up straight. Yet it was the beginning of finals and she didn't want to take time away from studying to rest. She didn't have time not to go to the studio (she an art major), to go to the health center. But it got worse. And worse.. I finally convinced her to go to the emergency room--I would at least know if she was obstructed, or impacted, and she could at least be seen by someone trained in IBD.  But no such luck. No scans, no xrays, not even an invasive physical exam (she's 19 and had this disease since she was 9, she knew what to expect). They sent her home with pain killers, but no treatment. This wasn't a small town no-nothing hospital. it was a teaching hospital in a major city.
I did what any mother with the means, the desire, and the fire to do so would do....I got on a plane.
I rented a hotel room.  I picked her up, brought her to the hotel room,  got them to make scrambled eggs at 11 at night, and went to the drugstore to buy all the horrible remedies that I as a LONG TIME sufferer of Ulcerative colitis know what to use. Ulcerative Colitis does NOT always cause diarhea. SOMETIMES, it causes the opposite. In college, I used to go weeks at a time without going to the bathroom. This continued most of my adult life until finally all I did was bleed. As I've mentioned before, when I was 34 my colon was completely removed because of all this bleeding.
My daughter knows this.
She went to the hospital looking for help.
they did nothing.
The health services at her school the next day were amazing. they did the necessary bloods, got in touch with her Dr. at home, followed whatever the Dr. at home wanted, and made necessary lab and Dr. appointments. When we got the the Dr. the next day, it was like a scene out of 'Terms of Endearment" with Shirley McClaine.  They attempted to have her seen by a physicians asst.  I stood in the middle of a large reception area, with my/her Dr. from home on the other end of the cell phone, and asked, LOUDLY, who was Dr. SOandSO. when someone pointed him out, I said rather loudly, I flew here from NY because your hospital couldn't be bothered to properly take care of my daughter, I'm not leaving until Dr. so and so gets on the phone and speaks and sees my daughter and HELPS HER.  It was exactly the type of moment that would have made me cringe had it been my mother and myself, although, I do remember when I had one of my big surgeries,as an adult, and I didn't like one of the private nurses, and I didn't tell my kind, sweet, husband----I told my mother, and let HER handle it. Like it or not, there are DEFINITELY times we channel our mothers.
We were able to get my daughter through her finals, and able to go away for the break as a family, and then we were busy with the flourish of preparations of packing my daughter off to Europe for a semester. Life is VERY busy sometimes.
While all this has been going on, I've had 2 more of those awful pouchoscopies, (one following an ER visit). The Drs. are discussing more surgery--which I REALLY DO NOT WANT TO DO.  Not fun. Lots of pain.
I've been researching colleges for my son.  ALSO Not fun---especially when we live in a world that relies more and more on one standard; WHY DOES HE NEED PHYSICS? Or PRECALCULUS???  I never took Chemistry! I use credit cards just fine!
Someone recently asked me what I will do when both children are gone.
I will be more than qualified to run a corporation, I just haven't been paid a salary for all my training and experience.