Voices Across America

Complex physical sickness leads to emotional sickness

Melissa

State: Michigan
Congressional District: MI07

Diseases

Blood Disease, Chronic Pain, Genetic Disease, Mental Health, Migraine, Neurological Disease, Rare Disease

Issues and Challenges

Melissa has encountered: Access to Expert Providers, Access to Medicine, Medicare / Medicaid Issues, Rare / Underserved Disease, Caregiving, Disability, Financial Assistance, Food Insecurity, Invisible Illness, Medical Devices, Prior Authorization, Social Security Disability

My Story

I am a single mom of 7 and some of my children are medically complex. 2 of them are on children's disability. Life is very busy and it is hard to manage my own medical conditions on top of it.

I have had headaches, joint and muscle pain and instability ever since I was a kid. I started getting asymmetrical migraines when I was thirteen. I was sitting in a summer school English class and my hand started going numb. Then my arm and my leg. Then my face and tongue. I was supposed to read out loud but I couldn't make sense of the words and I couldn't speak correctly. Me being me, didn't say anything about what was going on to anyone. I made it through class and started to walk home. The walk was a mile along a busy road. As I was walking, everything else set in. Light sensitivity, sensitivity to the smells and noises of the cars driving by and the pain in my head. I made it home and called my mom crying. She came home and gave me everything under the sun to try to help. About six hours later it started to fade.

My parents thought I had a stroke. Went to the doctor and I was diagnosed with migraines. I have had them ever since. I have been through many medications and am currently on gabapentin for prevention and Nurtec for a rescue med. I now have a yearly MRI to check on the T2 flare hyperintensities in my brain.

I have problems with my knees since I was 17. I went to PT and surgery was discussed. I have strange double jointed thumbs. I have ribs that dislocate. My hips also feel as though they dislocate. I have arthritis in my feet, hips, back, shoulders and hands. I have plantar fasciitis and heel spurs. I have carpel tunnel and tennis elbow. I have compressed discs in my back from getting hit by a car when I was ten.
I have frequent nosebleeds and after having a bout of severe bleeds lasting 20 to 30 minutes each, leading to an iron saturation of 5 - I have since been diagnosed with a hereditary platelet disfunction as well as Factor 7 deficiency. I have been taking iron twice a day for 2 years trying to get my iron levels where my hematologist would like it to be. She referred me to a specialty bleeding and clotting clinic. I had blood tests and genetic testing done. After 40+ years of nosebleeds, this was just diagnosed this year.

I also have sleep apnea and use a CPAP. This year I had a sleep latency test. I have since been diagnosed with idiopathic hypersomnia which is kind of like narcolepsy but no REM sleep in naps and delayed REM onset in sleep in general. To deal with the excessive daytime sleepiness I am currently being treated with Modafinil.

I have been referred to a new rheumatologist for my joint problems for possible connective tissue disorders. I have been to PT for everything from my feet, ankles, hips, back, shoulders and most recently my jaw (TMJ).

That is where I am at right now. I hope to learn more about my conditions but with the rare ones there isn't much to find.

Through this all I have struggled with depression, generalized anxiety disorder as well as PTSD from a previous abusive narcissistic relationship of 12 years. I am in weekly therapy sessions and have been for years.
I have made a tons of progress and I am going to continue to do everything I can to make the best of my situation. Taking everything one day at a time.

My Motivation and Inspiration

My motivation and inspiration will always be my kids. I want to be able to manage my symptoms and function better so that I can be more present and more fun.

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