May 1, 2023
On my first day of work, I was overwhelmed with enormous emotions and a heavy heart as a catholic mass was commencing a final farewell to heaven for my 27-year-old niece, Sami. She passed peacefully in her sleep on March 27th from a ten-year battle with a complicated rare illness. At 17, she underwent a complex surgery removing her whole pancreas.
It was difficult not to attend her funeral, even after several discussions with my sister about juggling my schedule, recently leaving Florida for Michigan and flying to Boston for a medical follow-up to turn around back to Florida, only to delay my job start date. We both agreed Sami would not want me to jump through hoops and exhaust myself. She would wish us to take a sister getaway to honor and celebrate our sweet Sami. She would be excited about my new job.
Even though I helped as I could from afar and spoke to my sister several times daily, I regretted the decision as the days came closer to her funeral. The emotions at times led to anger and screaming cries.
The weekend came as many of my relatives arrived at my sister’s. We were in constant telephone conversations. She was overwhelmed by the support, still in a state of shock. We both had mixed emotions about our decision not to come, but she said she had so many there now. She will need me later. We promised we would make the memorable sister getaway. I was highly overwhelmed after the conversation and as they headed to the funeral viewing. I went for a run even though it was a cold rainy day. I struggled with faith as my anger built in my soul. Is she united in heaven with other family members? After my run, I went to the shore of the place we are staying while ours is under renovation. As tears ran down my face, I tried to calm my anxiety and lost hope. I look down and notice a couple of Petoskey stones. This area is rare to find one but to see three. The water was frigid, but the determination to retrieve them was more important. The only way was to take the dock where the water entry was thigh-high. I took the plunge. I discovered six in my walk to get the three I had seen from above. Is this a sign? I took it if only to appease my anxiety.
On my drive to work, I cried, prayed, and screamed. I blared the music of songs that reminded me of my past family members so dear to my heart. As I pulled into work flooded with guilt, the thick heavy clouds in the sky on this cold morning, a vast hole opened with a bright beam of light as the Lady Gaga song “A Million Reasons” played. Are these signs of communication of hope from heaven? I will believe and hold on to this hope.
I started my job. Is it a learning curve or a question of my capabilities? I am old enough to be the parent of my superiors in the assignment of my responsibilities, which doesn’t bother me. It keeps me feeling young and engaged with the times. But I am slow and challenged one-handed, trying to do many of these responsibilities. They are patient and accommodating with encouragement. I am embarrassed and frustrated. Of course, I will not give up. I am getting creative in conquering these tasks.
I went to Boston for my two-year follow-up. The good news is all the tests were impressive. The surgeon was pleased with the results and the muscle movement. We discussed the challenges of obtaining a prosthetic. He has recommended a new surgical procedure called osseointegration. They would drill a metal rod into the remaining humerus bone, which would need to heal for a few months. The second surgery would be to attach another piece of metal at the end of it to attach the prosthetic. There are many complications and restrictions. Even though I would be an excellent candidate for my type of amputation, I am not ready to undergo more surgeries. We will revisit this in the fall. It was a discouraging visit. I felt the study was moving forward too fast versus analyzing the successes of this surgery to make advances. I have been a patient with nerve damage and excruciating pain for many years. I don’t know much, but I do believe. This surgery could help regenerate nerves for other nerve damage injuries, not just amputees. I am out of pain with the muscle memory and movement of all parts of my missing limb.
It doesn’t discourage me. I have met up with a young prosthetist who is up to the challenge of fitting me into a prosthetic. This week we will do some promo fittings. The big obstacle is dealing with insurance. In this ongoing battle, they determine what is a necessity. I need a blog just on the challenges with insurance approval. I have two-plus years of experience with the never-ending process and still no functional prosthetic.
In December, my daughter sent me a link to a 5K run on April 29th for Limb loss awareness. I was starting my workout regimen. It would be a good goal, even though I didn’t particularly appreciate running any distance. I played sports that were quick sprints and movement. Running felt more like torture. Yesterday, I did the run. It was a lot of fun. I had the best cheerleading squad, and my son-in-law, alongside me, encouraged me every step. It was torture. I did finish!
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