First Week

The first week home and out of the hospital wasn't good.  It was so discouraging to admit it, but ultimately, I was in the same place I was before I went into the ER 2 weeks ago.  When I left the hospital, the plan was to wait for my blood work to return and follow-up with the GI in a week to get my new medication started.  So, for a week, I was at home waiting.  And, in the mean time, struggling to keep my pain under control while dosing up on steroids to help temporarily relieve the chronic inflammation from my stomach through my small intestines.

Needless to say, we were very much looking forward to my GI appointment yesterday in Houston.  I anticipated receiving positive results from my blood work and getting my referral to Home Health so we can get this show on the road and get all this pain to disappear.

Babe and I left the house at noon to give us extra time to park.  My appointment was at 2pm, but they asked us to come by 1:30pm to fill out paperwork.  We were right on time.  And there we sat...and sat....and sat.  Let me be clear, between Babe and I, I am the patient one every time.  But, now, I am on Prednisone and it makes me irritable, short, and overstimulated.  I am well-aware. {Please take note so if I am snappy, you will forgive me:)}  We finally were taken back to our room, where we sat some more.  My GI, whom I think is a very good doctor, was in and out so fast, we felt pretty sure that this "Clinic" is not his forte.  (We had visions of Dr. House being forced into clinic duty.) He is a researcher, a very smart man and patient-care is not where his heart is.  He asked ME which drug I wanted to take, and what I wanted to do, but so much so that I felt like I had just treated myself...and I am no doctor.  And he was gone.  We waited and waited some more for the nurse to come in.  Evidently, I needed a few more vaccinations, so I received the first round of those.

I wanted to be weaning off my Prednisone, because I don't like the way it makes me feel.  The doctor, in his brief moments, said I could, but didn't tell me how.  When I asked the nurse, she said, "Are you sure you feel back to normal?"  Of course I didn't.  She told me NOT to come off the steroids.  As much as I want to, I agree with her, as the steroids are the only thing allowing me to eat any food at all.

As for getting on the Humira, she initiated my Home Health visit which she said could take up to a week...or TWO!  UGH!  They have to get it pre-certified with my insurance company (which will, of course change with Babe's new job in November) before they can call to make the appointment to send the nurse to my home.  

In our discussion with the nurse, Babe commented how busy they must be.  The nurse admitted that because they were so busy yesterday, that the doctors didn't know there were more patients around the corner...in additional rooms, despite being told.  Information, we really didn't want to know, that we had been sitting in that room while his other patients were being seen and we were forgotten.  When we walked out of the room, the entire office (which was huge) was shut down, not a soul in the waiting room, and the gates were already pulled so we were locked IN the office!  It was after 5pm....which translates to rush-hour traffic if you are headed ANYWHERE in the city of Houston.  We left our house at noon and returned home by 7pm for one fairly unproductive doctors appointment.

I feel better getting all that out.  So very frustrating, but still feel so grateful to at least be able to manage my pain and even have ONE option to help me feel better.  We are blessed.