Homecoming

Today I was once again released from the rehab facility. I am so relieved to be free from all of the confines and limitations and difficult conditions. I celebrate my freedom and my overcoming and my accomplishments. I still have a ways to go, but I have gone so much further than I imagined possible. I use adapted tools for now (special dishes and silverware and pens) but will get back to using normal items. I still cannot do buttons or zippers or snaps or tie things but that will come with time. Thank God for pull on pants and super cute Sketchers tie-less shoes. I am able to do so much more than I could at the end of January and it is a blessing to be home. It feels weird to not be confined to such a small space, to be able to get a drink when I am thirsty, to have a choice over what I eat, to not share a bathroom with four strangers, to not have to wait until it is convenient for someone to give me my medicine. It would be better if my mother were not in the hospital right now recovering from a stroke and a serious infection. I am still lonely and still missing someone to talk to and be with.
Yet for so many at that place there will be no homecoming, no new freedoms, no return to family, no return to a "normal" life. That existence is all that they will know from now on and that breaks my heart. In so many ways it is so wrong. It is so neglectful, so undignified, so restrictive, so demeaning, so limited. People become diagnoses become problems. Many workers are there because they care and want to be there, but many are there because it is a job and it pays and they were hired. They do not have any investment in the job, any compassion, any dedication. It is a paycheck. The system is broken and after 3 months living it I can say how it is broken but not clearly how it needs to be fixed. There are so many things to fix and from so many directions - policy, hiring, staff behavior, staff ratio, facilities, etc.
Most of all tonight I am giving thanks for my return home and prayers for those that I left behind.

Just Breathe

I will never again take for granted the gift that is breathing. For a while I have been having issues with difficulty breathing due to the mitochondrial disease but nothing like this. Whatever infection hit me hit me hard and set up a chain reaction of lupus inflammation and mitochondrial weakness in my lungs. I am getting by on breathing treatments every 4 hours around the clock (yes you can fall asleep giving yourself a breathing treatment sitting on the side of the bed) and the maximum dosage of cough syrup every 4 hours around the clock plus now steroids. I have had pneumonia, I have had walking pneumonia, I have had bronchitis and never have I had to work this hard to breathe. I am thankful that in the end this will taper down to a new normal for me. That it will ease off once the inflammation settles and the muscles come back on board as much as they are willing. I will probably do breathing treatments forever now, but I am blessed. I can breathe without oxygen (I cut that border line close a few times but I made it), I can receive the treatment I need, I am improving ever so slowly and I know that after this breath there will be another one. I am blessed. For now I am blessed to just breathe.