Tuesday, January 7, 2014


As many of you already know, I was diagnosed in December with Obstructive Lung Disease and it is far from well controlled. We are struggling to get it under control and I am still very, very sick. None of which is helping my IC by the way.

So today, I had a much needed appointment with my psychologist. Since being diagnosed with IC and going on Disability, I have been working with a psychologist to learn coping strategies for dealing with chronic, incurable illness. I could not manage without this therapy. But since I came down with this new disease two months ago, the challenges have been even greater. When I was in the hospital for 8 days, my psychologist stopped by to visit me for a little bit and that was very helpful. She also called me twice over the last month for 10-15 minute conversations which were also important. But I really felt I was in need of a full one hour session and this appointment has been on the books since before I went into the hospital in early December. I really wanted to keep it. So whenever I have an appointment with my psychologist, I always try to schedule one of my instillation appointments immediately before the therapy appointment. Getting my instillation before the therapy session allows me to sit comfortably for the hour without having to interrupt the session for bathroom breaks. And both doctors are right across the hall from each other. It works out well. So I had an instillation scheduled today to do this. And with all the coughing this Lung disease is causing, my bladder was begging for an instillation!

My Mom dropped me at the door and I had her cane as I am still extremely weak and cannot walk unassisted after 8+ weeks of this disease attacking me. I walked ever so slowly, stopping along the way to try to catch my breath. I was struggling to breathe before I started walking and now I really couldn't breathe. By the time I made it to the IC doctor's office for my instillation, I was gasping for air and collapsed into a chair. I was able to get my instillation and get across the hall to the psychologist but by then it was time to pull out the Rescue Inhaler for a few hits because I really could not breathe. I had pushed myself too far and now I was paying for it. I should have known better, but stubbornness had gotten the better of me and I did more than I should.

When I got into the psychologist's office to talk, we both agreed that when I left after our appointment, that she would call Transport Services and have a wheelchair sent up to take me to where our car was.

Today's trip, while I believe was very necessary, has taken a huge toll. I got home and my breathing was still so bad, we had to do a Nebulizer treatment. I am beyond exhausted and in pain I wasn't even able to nap. I tried, but listening to my wheezing and not being able to breathe well kept me from dozing off. I gave up and asked for another Nebulizer treatment. 

There are still many unanswered questions about this new disease and I am pursuing tracking down those answers. In the meantime, today proved I am just not anywhere near being able to do anything close to what I could before, even with my IC. I thought I was limited before this; little did I know.

So until things improve and we can get control over this: Uncle; I give in. Call for the wheelchair!

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