The Last Straw Pt. 1
I am broken. In my last post, I said it’s time to get real. I’m not proud of feeling this way, nor am I comfortable with it. But it’s real. I feel broken…physically and spiritually. The title of my blog is “Life After Groundhog Day” because I wanted to document how life evolves after a moment – for me, being diagnosed with an autoimmune disorder. No, it’s not cancer, but it’s not nothing either. The past two and a half years have been so hard. So hard that I have found myself thinking things that are difficult for me to admit to myself, let alone to a public audience. The thing is, though, the hard hasn’t come just from this illness. Rheumatoid Arthritis is just one bit of straw. There are more.
When I was 14, I was in a motorcycle accident. I made a stupid choice and I have paid for it since. I had a hard time getting through that, but, ultimately, I felt like it made me a stronger person. It became my testimony of faith. The problem was, I mistakenly thought that motorcycle accident was my straw and I didn’t expect more. Don’t get me wrong. I know I am lucky. I have two healthy children, a husband who loves and supports me in every way and friends and family who are there for me whenever I need them.
My father passed away in 2012. It seemed sudden, but after the fact, we all knew he had suffered in silence for a long while before that Father’s day when he was diagnosed with stage four lung cancer. We stayed by his side for the last month of his life, trying to keep him comfortable and “happy” or at least entertained. The pain caused by his death took me by surprise. It left a hole in my chest that took years to heal. It took me several months to be able to go back to church. Not because I was angry with God, but because I was ashamed of myself as a “Christian”. I didn’t talk to my Dad about God. I was unsure of his relationship with Jesus. I felt I had let him down. When I finally went back to church, my pastor’s sermon was on grief. He didn’t know my dad had passed, nor did he know that was why I had missed so many Sundays. But that sermon was exactly what I needed. After the service, I asked if we could talk. I will not go into detail about what was said, but my amazing pastor put my heart and mind at ease about my inability to broach the subject of God when my father was dying.
When I was diagnosed, in 2018, my mom was already sick. In fact, I put off telling her about the RA for months because I didn’t want to add worry to her pain. She had several chronic health problems and her medications were causing her kidneys to fail. She spent much of the second half of 2018 and the first half of 2019 in and out of the hospital.
Through my diagnosis process I found out that I had Hepatitis C from the blood transfusion I received after my accident in 1986. I was lucky, because I apparently cleared the virus and only carry the antibodies. I do not have active infection. I also have some heart irregularities that we are just keeping an eye on. I told my mom none of these things.
On January 21, 2019, my daughter’s 24th birthday, Bryan’s mother died of a heart attack. It was sudden and shocking to all of us. It was especially hard on my daughter to lose her grandmother on her birthday. Bryan spoke about his Mom at her funeral. He did it as only Bryan could and had us all laughing through our tears. It has been hard to watch him, his sister and their father grieve an amazing wife and mother.
On May 21, 2019, exactly 5 months to the day after losing Bryan’s Mom, my Mom passed away. I had watched her decline for years, but the last four months were particularly hard. Her body had so much wrong and it just wore out. I prayed for God to have mercy and take her for at least the last two months, but the suffering continued until that morning.
Grieving my mom has been vastly different than the grief when my dad passed. When my Dad passed, I was there. I was at his side. When my Mom passed, I wasn’t there. I had visited the night before, but I wasn’t there at that moment. I couldn’t FEEL it. I cried and it hurt, but it wasn’t the same as I experienced with my dad. I spoke at my Mom’s memorial. I thought it would help to see her, to speak and to get that closure. It didn’t. I was angry. I was angry at God. I wondered why she had to suffer for so long? Why couldn’t she have passed as quickly and painlessly as others have?
Two months (almost exactly) after this, my daughter lost a very close friend to a senseless car accident. My sweet daughter lost both grandmas and one of her best friends within 6 months of each other. I became even more angry at God. I thought about all of the friends and family who had lost children in the past few years, the young friend who lost her husband, the kids with cancer and other terrible illnesses. For what purpose? My faith started to crumble.
Back to my physical health. In January, 2019, I started on a biologic, Humira, in addition to methotrexate. In April, an average cold turned into bronchitis and a sinus infection. It took two rounds of antibiotics and steroids to beat it. Just five days after finishing those antibiotics, I developed diverticulitis. Within 5 months, I had another sinus infection, diverticulitis again and shingles. The GI specialist suggested we think about surgery to remove part of my colon, but I refused. My rheumatologist and I decided to change my biologic since we believed the Humira was contributing to all of the infections. (RA is treated with drugs that suppress your immune system and they all put you at higher risk for infection) He suggested Orencia and after some reading, I agreed. I had another, much less severe, instance of diverticulitis a few weeks after the change, but have been healthy since. No colds, sinus infections, etc. since April. YAY!
However, during the first weeks of the COVID shutdown, when I was teaching online from my dining room, I began experiencing hip pain again. I hadn’t had this severe of hip pain since my diagnosis and starting medications for RA. I contacted my rheumatologist and he put me on a taper of prednisone – usually a miracle drug for my RA pain. This time it didn’t work. At my next appointment, he suggested I have an MRI, because he suspected it wasn’t RA this time, but a mechanical issue. He and I both figured this had something to do with my motorcycle accident. The MRI came back that I had a torn labrum and I was referred to a hip specialist.
At this point, June 4th, I had been to so many doctors in the past two years – primary, rheumatologist, cardiologist, gastroenterologist, ophthalmologist – I was already pretty beat down and weary. The torn labrum didn’t surprise me, but what the hip specialist told me sure did. After reviewing my MRI and X-rays, he said, “This did not come from your motorcycle accident. When you tell me your hips have hurt your whole life, I believe you.” WHAT THE HELL?
To be continued…
