She was so encouraging about how God will use my health problems for good. She told me God had given me many gifts and put me in a place where many people listen to me and respect me. My disease will give me an opportunity to share my faith with others and let them see the peace that comes from a relationship with Christ. Whether your theology says everything that happens is the will of God or it says that God will provide care and comfort during difficult times brought on by a world of free will, I pray that I can be a living example of God's love through this time.
Alan and I were talking the other night about so many things that have happened to put us in a place to be able to deal with this in the best way possible....the ONLY physician in Ohio listed on the Amyloidosis website as having interest and experience treating Amyloidosis is Dr. Efebera. So many patients have to travel to Boston, New York or Minnesota to get the most advanced treatment. I can get it 20 miles from my house. The twice yearly meeting of the Ohio Amyloidosis support group just happens to be scheduled this Saturday at the James Hospital at OSU. And, regardless of how frustrated I was with my primary care doc not taking my symptoms seriously, I was directed to those who did and they diagnosed this disease before I had any organ damage (at least that's what I know so far.)
I have my own personal health advisory and care committee...my husband Alan Medical ICU nurse, my daughter Amy adult care Nurse Practitioner, my brother in law David Internal Medicine Physician.
I found out one of my best buds from college is a hematologist/oncologist Nurse Practitioner working on her PhD who worked on the Stem Cell/Bone Marrow Transplant Unit at the University of Florida hospital for 6 years. A former colleague at Nationwide now works at Vanderbilt University Hospital with hematologist/oncologists on a program designed to use data and analytics to help guide physicians to the most appropriate diagnostic tests.
Two years ago, I was co-chair for my church's capital campaign. I got to work with one of the founding members of our church, John Rucker, on this effort and we developed a wonderful relationship. He went through high dose chemo and stem cell transplant 6 years ago. We had a great phone call tonight and it brings me a lot of comfort knowing that someone I know and respect has gone down this road and will be there to help me along the way.
So, do I get mad at God about this disease? How could I? When I have received something good from God, I never stopped to question "Why me?" It would be wrong (hypocritical, really, and I HATE hypocrisy) of me to do that now that something bad has happened. I don't believe my disease is from God....its from a combination of genetic and environmental factors that has caused my bone marrow to go haywire. I do believe that all these seeming coincidences I list above are really what my friend Cass calls "God-incidences"....visible examples that God is there to help lessen a burden that the world placed upon me. I pray I can continue to see God's comfort as I progress through this and can be a symbol of God's love to others.
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Current medical update:
- meeting with Dr. Efebera on Thursday to get treatment plan and find out if bone marrow biopsy showed Amyloidosis.
- appt Monday with the nephrologist to "get him on board" per Dr. Efebera's nurse and to do a kidney biopsy of the Amyloidosis didn't show in my bone marrow. Having been hit in the kidneys playing basketball, the thought of a long needle being inserted into my kidney is not appealing.
- Cardiac MRI scheduled on 3/19 to check heart function.
1 comment:
you are amazing in your outlook. thank you for sharing your journey in all this. of all the things I hate about social media, the ability stay connected and informed with friends during times like these is a blessing. Thinking of you, praying for you.
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