October 14 – Kidney Ultrasound – Normal
November 4 – Stress Echo-cardiogram of my heart – Normal
November 6
I met with the Neurologist and she ordered a Neuro MRI and Lyme test. The Lyme test was negative and the MRI found an 8mm pineal gland cyst in my brain. Honestly, I was relieved. I thought, this is it…. this is what is causing my migraines and could be what is causing everything else. I was nervous about the thought of brain surgery, but was relieved to have an answer. A week later, I talked with the neurologist and was told that this was actually a common cyst, was not the cause of my symptoms and would be fine left alone. Dead end, again.
November 7
I saw my Dentist and everything was normal. I saw an Ear, Nose and Throat doctor to investigate my sinus, congestion and lymph node issues. The ENT ordered a sinus CT which found that I have a slight deviation of the nasal septum, a septal spur and moderate mucosal thickening, but none of these findings would cause my other symptoms. The ENT doctor also noticed that I was deficient in my pneumonia antibodies, so I was re-vaccinated.
Around this time, I received the call from Mayo Clinic and was scheduled for an appointment, December 17th! Finally, a light at the end of the tunnel, finally, a team of doctors that would work together and run every test needed to get to the cause of my symptoms.
Unfortunately, one week before my appointment, I received a call from Mayo that the insurance would not cover this appointment or any other appointments that would be scheduled while I was there. I was devastated. The insurance company, Cigna, claimed that I had not seen enough doctors in Tennessee to constitute traveling out of network. They recommended I get a second opinion. I then started over…. I got a new primary care physician, this time with Vanderbilt instead of Saint Thomas and I started all over.
December 6
My migraines continued to get worse, as did the rest of my symptoms. My Neurologist ordered a spinal tap and ran every test they could think of on my spinal fluid. The opening pressure of spinal fluid should be less than 18 and my opening pressure was 28. My neurologist called with the news that I had idiopathic intercranial hypertension and that was causing my migraines. I was so relieved, I almost started crying. I was not crazy, there is something going on and we finally have a part of the puzzle… or so we thought…
December 18
I met with my new primary care physician to get a second opinion for insurance. More blood work was drawn and as usual, my CRP was still high as were my lymphocytes, among other things. More signs that something was wrong, but we were no closer to finding an answer. She then recommended I see another Pulmonologist and Cardiologist and around and around I go.
Meanwhile, I was continuing to try to work what jobs I could. Over the summer, I missed multiple shows due to the strenuous activities needed or due to the heat. The hotter it was outside, the higher my heart rate would be and the more difficult it was to breath. Big thanks to David, another wonderful employer who understood my physical limitations and still allowed me to work the NYE event. The whole team pitched in and helped me out wherever they could. I am so lucky to have such support through this crazy time from such a wonderful music industry family.
January 1, 2020
With the start of the new year, I switched insurance from Cigna to Blue Cross Blue Shield, in hopes that new insurance would give me the option to go to the Mayo Clinic. I selected the best possible policy on the Health Care Market Place. I then called Mayo to confirm that they except that insurance and also spoke with BCBS about Mayo, who confirmed that my trip would be covered! I once again got on the wait list and eventually got an appointment at the Minnesota location for February 18th!
January 3 – Oncology / Hematology
Since I was still having swollen lymph nodes, pain in my chest / left breast, and a high CRP, my first primary care doctor gave me a referral to an oncology / hematology specialist. I met with one of their top doctors, he evaluated me and ran more blood work. After the blood work came back, he called and said he didn’t see anything that he could help with, that it was not an oncology/hematology issue.
Oncology: the study and treatment of tumors
Hematology: the study of the physiology of the blood
January 6
I met with a functional medicine clinic to get a look at the whole picture of my body and see if they had any idea of what could be causing my issues. We found that I have several food sensitivities including soybean, peanut, corn, casein, wheat, and egg. This would not be causing all my issues, but was at least something. Later, I learned that they thought that I had been exposed to two strains of pneumoniae and they recommended a plan to help with my symptoms. The recommended plan sounded strange to me, so I sent it to my PCP. She dis-agreed with this plan of action and suggested that it could make things worse. At this point, I knew I was going to the Mayo Clinic in February, so I decided to just wait before trying to treat my symptoms with this plan.
January 7 – February 4
I worked the Super Bowl in Miami. I was determined to get through this event because I was able to bring in a number of friends and colleagues to work with me, and I knew that if I could make it through, then I would be financially stable enough to take off and focus on getting healthy. At this point, I was not as good at hiding how I was feeling, and am again thankfully for the support of all my colleagues during this time. I was focused on doing everything I could to get to Mayo and to get answers!
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