In Rare Form

I was diagnosed with liver cancer at three months old. At four months they removed the right lobe of the liver along with the tumor.  While the doctors were confident they removed all of the cancer cells I had four rounds of chemotherapy as a preventative measure.  I was in remission by the age of one.  However, my journey was just starting.

Due to chronic ear infections, I had ear tubes placed in my right ear.  Soon after my ear drum melted.  Yes, you read that right – MELTED. Doctors think it was a reaction because this surgery was done so soon after my chemotherapy.  Over the years I have had multiple surgeries to rebuild my ear drum but neither of those surgeries were successful.  To this day I still have a hole in my ear drum and I have moderate conductive hearing loss.   I have a hearing aid but I rarely wear it.  I’d rather just ask my husband to repeat himself 12 times.

I was also born with a condition called hemihypertrophy.  The entire right side of my body is larger than the left.  Both in length and in girth.  This means one leg and one arm is longer than the other and my feet are two different sizes.  Growing up I wore two different size shoes.  In the 90s Wal-Mart allowed my mother to purchase one pair of shoes with mis-matched sizes which was a huge help.  However, as I got older and wanted not only more shoes but more styles of shoes, I started wearing one size because of the cost.  I would always have to “see if my big foot fits” and “does the back lift off the little foot when i walk?”  For the most part this didn’t bother me growing up.  I was young, it was all I had ever known, and I was never stumped playing those interesting facts ice breakers.

When I was 12 I had surgery to stunt the growth plates in my knee in my longer leg.  This was supposed to give my shorter leg time to “catch up”.  The surgery was considered a success because my discrepancy went from 3cm down to 1cm.  I went on with my life and while I did feel like I was sick more often than others I lived a normal, happy childhood. 

In high school I was diagnosed with IBS and began to develop what I now know to be endometriosis.  I also began to develop anxiety and was a, and still am to be honest, hypochondriac.   I tried to keep busy with school, work, and extracurricular activities.  College was more of the same – occasional anxiety and stomach problems.  On the first day of my period, I was bedridden.  It didn’t matter if I had class, work, etc. on the first day of my cycle I could hardly make it out of bed.  Unfortunately, that is often still the case.

After college my anxiety skyrocketed.  I went from being a few hours from home surrounded by friends and living with a roommate to being alone.  Traveling the country by plane for my job as a sorority consultant and then once I switched jobs traveling alone throughout Kentucky and Tennessee by car.  I spent hours driving just imagining all of the things that were wrong with me and diagnosed myself with a new condition every day. 

I left that job, got married, and moved across the country. I improved my diet and started working out 5 days a week.  Plus, I was in the newlywed bliss period and I was a stay at home dog mom who went to Hobby Lobby after Zumba every day.  My anxiety slowed and I felt happier than ever.  Then we moved to Hawaii and almost immediately I had miscarriage.  This brought on a whole new set of anxiety issues.  After a few very hard months mentally (remember i had just moved across the world and knew a total of 2 people on the entire island) I got pregnant with my now four-year-old.  Pregnancy was rough on my body and I had major postpartum mental issues.  I was never diagnosed with anything but I know I had postpartum OCD. 

At the same time, I was dealing with the shock (both mental and physical) that my larger side of my body had grown during pregnancy.  My longer leg was prompted by the pregnancy hormones and my legs went back to be 3cm apart.  This caused a lot of problems for my back and legs and mental health.  I now wear a shoe lift in my shoe on my smaller side.  This helps even me out which lessens my pain.    I’ll share that long and difficult story at a later time.

By this point if you are thinking “geez, lady you got a lot of problems” than I would say YES, I DO AND IT DOESN’T STOP THERE!  Within the last year I have been diagnosed with fibromyalgia and lichen plano pilaris, which is a scarring form of alopecia, and told that I am at a very high risk for developing glaucoma in my right eye.  I’m being watched closely and go back next month for another MRI of my eye. 

Some days I live a completely normal life – with mild pain and discomfort.  Other days it’s hard to get off the couch.  Managing IBS, endometriosis, fibromyalgia, alopecia, and the pain from hemihypertrophy is a lot.  Both a mental and physical toll that has only been heightened by the pandemic. I hope by sharing my healthy journey I’m able to connect with others who have similar stories and struggles.  I hope I can show that life with chronic illness is so much more complex than what you see at face value.  My main hope is that I can bring laughter to this very sensitive subject.  I don’t really believe that laughter is the best medicine – give me actual medication please – but it definitely helps!

Thanks for being here!

xo – Margo