Wednesday, April 26, 2017

Pain and Change

It is amazing to me how pain can completely alter your body, mind, and soul.

I had pain since Friday on my right side under my ribs which radiated up my neck. I was in the hospital for two nights / two days for what I now know to be a pulmonary embolism caused by a combination of being on birth control pills and my forced sedentary lifestyle. The pain was debilitating, causing me to be (?) or feel (?) more disabled than I am.

I was hooked up to heart monitors and oxygen and IVs. There were wires everywhere. The nurses and others had to empty my ostomy bag and put me on the bedside commode. People I didn't know had to wash me. Marian took control of my care. My father fed me.

My kids saw the pain in my eyes and it scared them; and I saw the fear in their eyes.

Some of the pain medications worked. Some of them didn't. Some made me sleep on and off for hours and made it impossible for me to open my eyes. I kept thinking about how I have a limited amount of time left on this earth and I don't want to spend it in the hospital and in pain. The pain made me cry and want to give up.

And now I am home. The pain is being managed well. I am on a medication for the pulmonary embolism, and with time that will go away. And with that so will the pain. I feel (?) or am (?) less disabled than I was in the hospital. My hands still feel extra stiff and my fingers are still more gnarled. Adam and I jumped back into our regular routine with some small changes. We took a shower and washed off all the hospital grime, the sticky tape residue, and cut off the bracelets. I fed myself. I hugged Gillian and Ean. I anxiously await Sarah's return home for the summer. I once again have plans and life's little gifts to look forward to.

This whole experience was not unfamiliar or new to me. I had lived with pain from my UC on and off for thirty years. Some of it far exceeded the pain I felt from this experience. I had my colon removed in June. I had been in the hospital many times before. This experience held much more of an impact. It had bigger implications. Whereas I knew the end result of UC hospital visits, I didn't know how this one would end. Whether it was realistic or not, my mind was beginning to prepare for the worst, and that was scary.

While in the hospital I had to tell MANY people about my ALS. "I can't move over to the table. I have ALS." "Please place the pills in my mouth. My hands don't work right. I have ALS." Most were quite courteous and asked questions and wanted to learn. "What is the best way for you to do this?" Those who were more familiar with the disease showed a different level of compassion. "When were you diagnosed?" "Has your disease plateaued?" "I'm sorry that you are going through this..."

I am not sure what this post is "about". I just know that like with every other part of my ALS journey, this experience has also changed me.

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