Psalm 23: The Lord is my Shepherd. I shall lack nothing. He makes me lie down in green pastures. He leads me besides quiet waters. He restores my soul. He guides me in paths of righteousness for his name's sake. Even though I walk through the valley of the shadow of death, I will fear no evil for you are with me. Your rod and your staff they comfort me. You prepare a table before me in the presence of my enemies. You anoint my head with oil, my cup overflows. Surely goodness and mercy shall follow me all the days of my life and I will dwell in the house of the Lord forever.
About 2 and 1/2 years ago, I became profoundly aware that my health is not something to be taken for granted. I had declining health after starting a new job and went through months of tests, procedures, scans, biopsies, blood draws. I was sent to every specialist - neurology, infectious disease, hepatology, rheumatology. My case was difficult and I was incapacitated. I didn't work for 6 months. The final visit I had was with a rheumatologist who diagnosed me very quickly after hearing my symptoms and what transpired at the onset. She informed me that I was sick with an autoimmune disease called polymyalgia rheumatica. She said it is rare for someone my age to be diagnosed with this disease since it is typically diagnosed in the 7th or 8th decade of life. However, she said that I had most likely had an over-reaction to several vaccines I received prior to starting my new job. This is more common in certain populations - including people from Northern European decent. Those people can have genetic predisposition to have an over reaction with the immune system where it is sensitive if it is "poked" the wrong way. I started on prednisone and like a miracle, I was better the next day. I had gone from pretty much bedridden and unable to walk to zipping up and down steps within 24 hours of starting prednisone.
The disease is not like it reads on paper. It is relentless, it causes suffering. It is debilitating. I had to cut down hours for work. I had to change my routines of daily life and make adjustments with any plans in my schedule. Anything that might cause inflammation - an illness, a tooth issue, a cold - sets off a "flare" of this disease. To most people I would look perfectly healthy but on the inside I'm suffering with debilitating pain and feeling very fatigued and often times unwell.
Fast forward to this past fall - I was not feeling well at all. I missed several important family gatherings because I wasn't feeling well. Working was enduring each shift. Some I had to call in for because I felt so unwell. There was lots of communication between rheumatologist and myself about dose changes, med changes, how to make things better, how I could still engage in life. By early January I had lost 15 pounds. My rheumatologist was very concerned. He told me to see my PCP for cancer screenings of every type and to have my all over health evaluated. During this time, I underwent a procedure that ended up with accidental cross - contamination with a previous patient's tissue. This is requiring regular testing for the next six months for blood borne pathogens that could permanently affect my life.
By March I had lost 20 pounds. I was having difficulty eating much, feeling full after small amounts. I was diagnosed with severe gastroparesis. I was started on a medication to help my stomach process foods. I was also having difficulty with my bladder functioning properly. I requested a urinalysis because it seemed I was having issues with recurrent infections. One test revealed that I had several signs of infection and also an indicator showed my liver was not working properly. I sent my PCP a message requesting liver panel testing. I continued to deteriorate. Difficulty ambulating, feeling very weak and fatigued. Having excruciating pain in my hips and pelvis. My PCP ordered the hepatic labs at the end of the week - several days after I requested. When they came back on a Saturday, the levels were high enough that I was sent to the emergency department. I ended up being in the hospital for 5 days. While I was hospitalized, I was also diagnosed with urinary retention. I was taught how to self - cath and given medication to help with the situation. With my direction, the doctors realized that the medication I was taking for the severe gastroparesis caused my liver issues. That medication had to be stopped. I saw several specialists in the hospital - all of whom said I have a very complex case and I need to be seen at Mayo clinic for help. The approach of a multidisciplinary team, they all said, is necessary to evaluate the constellation of symptoms.
I have now lost 25 pounds. I have a variety of neurological symptoms that have been added just in the last week. We were directed here by the doctors that know me best and told me there is testing here that is not available in the state of Michigan and will be necessary to help find a diagnosis. We were given an appointment date for May 12 and made arrangements to travel and stay, and for our 4 girls, our treasures. I started stuttering on the 10th of May. It was noticeable but not terrible. During the trip to Mayo, the stuttering was remarkable. We called my neurologist who said continue to Mayo as long as you're able to talk. John wheeled me to the bathrooms at rest areas on the way. I was reclined fully and suffered greatly with pain during the 10 hour journey.
Prior to our first appointment on the 12th, we made our way to the Business Office to pay upfront.( The insurance had asked us to go to U of M first, but UM had denied referral because they are over capacity and cannot take my case. ) We have to pay out -of- pocket prior to every procedure that is done. So we paid the down payment at the business office and made our way to rheumatology. The doctor - a gift from God - listened to my story and was very disturbed by the new onset stutter. She left the room briefly and then informed me that an ambulance had been called and I would be taken to the ED at Mayo St, Mary's. I left on a gurney out of the office without John to the ED. I was called in as a stroke code. So many doctors rushing, went straight to CT of brain , followed soon after with an MRI of brain and brain stem. Thankfully no bleed and no stroke - the hospital planned to admit me but informed me that testing for my condition could not be done as long as I was inpatient, so ultimately I made the decision to go back to the hotel.
We are now waiting for a slew of tests and appointments this week and praying for God's mercy in leading to diagnosis. He has sent angels along the way and we are so grateful. Your prayers are coveted and we are so thankful for all the love, prayers and support. God has shown his mercy through the love of his people.