Tomorrow I will be home from the hospital for two weeks and I am pleased that I am more stable. I have also not had an infection for over two weeks so I have been able to stay on the Cellcept. This drug suppresses my immune system and when I have an active infection I need to be off of it so that my body can fight the infection. The problem is that when I am off immunosuppression my disease is exacerbatted and my body is actively attacking itself at a cellular level. The longest I have been able to stay on these drugs since March has been a few weeks before another infection emerges. Then while on the antibiotics I need to be off the other. In order for it to reach it's therapeutic level I may need to be on it for months at a time versus just weeks.
This summer I have been amazed at how well the help in the home has worked out. Having the attendant care program from the Center for Independant Living and the other supports such as nursing and therapies that are in place have made it possible for me to stay home. "Home" may be changing because this house went on the market last week and we are hoping that a move to the Lehigh Valley can take place (the sooner the better). There is better acute care there and I will be closer to Hershey Medical Center and Chris who can help me with the children.
I had some physical therapy this morning while the children were at church and the therapist was able to help stand me up holding onto the walker for almost 20 seconds without my knees buckling. My visiting nurse, Amber has told me that my lungs are diminished and there is concern about them collapsing at the bases. I am awaiting a return call from the Critical Care Pulmonologist on what tests he wants to run to check the status of my lungs. I hope either he or his nurse will call me this week. I have two visits scheduled at Hershey this month and I hope I will be strong enough for the trip. I also will see the family doctor this Tuesday.
I am trying to stay strong and it is hard not to get discouraged at times when there are so many variation in my abilities. This morning I needed help from the therapist transfering from the bed into my power chair and then this afternoon when Chris arrived (from Allentown) I needed less help....now tonight my neck muscles are weak so I am very wobbly and I am struggling to move my legs. I never know how to plan or predict. I have my bed in the dining room and I am trying to be out of the bed and in the chair for a longer period of time. I want my sitting endurance to improve.
Sometimes I hope that I will wake up and be restored back to the activity level that I once had a couple years ago. This morning I cried when the children left for church because I wanted so much to be going as well. I can't take that risk yet because I want to remain infection-free as long as I can and I also need to choose how to use that energy that I am granted for the day. It matters so much that I am able to do what I can but sometimes I desire so much to be out of this house and involved more in the community and part of life outside these walls. On the fourth I wished that I could take the children to a fireworks display like we did in the past. I am trying to be thankful for what we can do together, but there are losses that I experience and many of those losses have to do with my changing abilities.
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