Here is my story that was used at the CSF Dinner Dance for a Cure.
My name is Melinda and every day I fight to end Chiari. Not only for myself but for my 2 children. As a family we know how devastating Chiari is. There is not one day in my life that I do not feel the effects of it, and detest the very word. My story started a long time ago, but I was only recently diagnosed.
As a child I was always sick. I never felt good and my head always hurt. I can remember going to school and praying for the day to end. I hated school. The classrooms were hot and made me feel icky. My head ached, and I wanted to play but most days watched as my friends played. Learning to read was a challenge. I tried to explain how the words danced about on the page and made me sick, but everyone said my eyes were fine. I struggled but pushed onward. I remember many nights laying in our living room, the scratchy couch under my cheek, the cool darkness of the room, my mom chatting in the kitchen while washing dishes. I wanted desperately to get up, but I could not. I hated riding in the car. Some days were so bad when my mom even moved the car my eyes would shut and the tears would run down my cheeks.
As a teen I struggled with not being able to keep up with my friends. Getting sick at the worst moments like on trips with friends. I begged the doctors to help me. My mom took me to one specialist after another. I was finally diagnosed with Endometriosis and Migraines. None of the treatments really helped. I was still in pain. In college, my symptoms were awful! I was taking a full load at school and working 3 jobs. I never stopped. And my body felt it. I pushed through pain and kept going. At this point, I was done with docs. I figured I would just drink lots of caffeine, not sleep, and keep myself so busy that I would not dwell on how bad I hurt.
This worked for awhile until my body would just crash. Then I would take a week to recuperate and go right back to the craziness.
Then in my late 20's I felt pretty good. I had several years of health. I married and was pregnant with my first child. During the pregnancy I developed horrible headaches again, and kidney stones. After a 26 hour labor, my son was born. I felt ok for a few years, until I was pregnant again. While pregnant with my daughter the sickness and pain was horrible. I had kidney stones that blocked the exit of my kidney. I had to have a stent placed while pregnant. I was terrified. The stent helped and I made it through the last 2 months. After my daughter was born I had surgery to remove stones. My last pregnancy several years later also took a toll. I lost feeling in m right leg and dragged it for the last few months. Only 6 months after my son was born, my daughter underwent brain surgery. She needed to be lifted and carried. Then 6 months later she had spinal
surgery. Six months after this we moved, and this is when my body spiraled out of control. I could no longer ignore how much pain I was in. I needed answers. I had 3 kids who needed their mom.
I started researching my symptoms. I had many of the same symptoms my daughter had. I found a few docs I thought could help me. One was a spine surgeon and one was a geneticist. They both confirmed I had a Connective Tissue disorder called Ehlers Danlos Syndrome. The geneticist also diagnosed me with Postural Orthostatic Tachychardia Syndrome. I underwent surgery last September to fuse my c1-c2 vertebra. But the pain has not stopped. I saw my daughter's neurosurgeon in June of this year. He confirmed that I had Chiari I Malformation. He also felt I had flow issues because the base of my brain is so large at the opening of my skull. He recommended a decompression surgery on my brain. I am also on a waiting list to see a heart specialist about my POTS and possible Mast Cell diagnosis.
Every day is an uphill climb. I try to do the climb with grace and love. Even though I hurt every moment the pain varies. Some days I can push onward, others it is hard to even get out of bed. But as a mama and wife my job is never over. So for their sake I do not give up. I will keep looking for answers and a way to make it!