Unexpected Freedom

I opened my car door, slipped in and laid my head on the steering wheel and cried... and cried ... and cried. These were not tears of sorrow, these were tears of relief. I have to admit that I was very surprised by the depth of the relief I was feeling.

It all began an hour before when I raced to Salem to meet with my immunologist from the Conference I was at in Hillsborro. I knew that the immunologist and my other specialists had spoken and all of them had agreed to a joint treatment plan. I even knew that the treatment plan was to put me on a macrolide therapy which would both kill any lingering infections and would strengthen my lungs. What I did not know is when I would begin the gamma globulin treatment again. The gamma globulin that they said would save my life by providing the antibodies I so desperately need, for 11 months had made me dreadfully ill. It was all wrapped up by having a bad reaction to the new brand of gamma globulin they were trying in the hopes it would not make me so ill.  That reaction affected my lungs and I have been fighting to get back on top of things for 3 months. During the recovery time they had pulled me off treatment to allow my body to heal. But I had already had two back to back infections so there was concern over what my immune system was doing.

I was dreading hearing the start date of treatment in a way that really surprised me. I was relieved to hear that I could not do the macrolide therapy and the gamma globulin at the same time. "Ah! Reprieve!" was my first reaction as he told me that I would probably be on the macrolides for at least three months. Three more months of no treatment! And then he said, "I am not in a hurry to start up your treatments again. And I would like to apologize for how long you struggled with it before I took you off." I sat there with my mouth open and my eyes tearing up. My next thought was, "Which of my Drs squealed on me?" Totally unfair thought, but there it was. He went on to explain that most people just do not have any problems tolerating the treatment. I finally said, "You know when you say that, what I hear is, "You are a wimp and should do better". He shook his head and said, We will take another look in 6 months and see what your body and your immune system is doing.

I stumbled out of the office, down the stairs, out through the parking lot and into my car, which is where we started. I am still filled with a deep sense of relief. In many ways I feel like I have been given my life back. Life is so complicated on treatment and I was spending so much of my time sick and so very tired. I have been given at least 6 month of freedom. I am going to enjoy each and every moment.

And freedom feels pretty good!

Just Connie