As a young adult, I thought I was going to be dead by twenty-five. It didn't make me sad to think about, it's just something I had always assumed. This is especially odd since all of my grandparents lived long lives and one of my grandmothers even lived to almost 102 years old. She would be 106 years old now. Her sister just turned 102!
So why did I assume I would live a short life? My guess is that years of chronic illness had convinced me that my luck would run out before my time.
If I had been born when my grandmother was a child, I would not have survived. I was born four weeks premature which in 1981 was a much bigger deal than it is now. I was jaundiced and only four pounds with a submucosal cleft palate and bifed uvula. Say what? A submucosal cleft palate is defined as "bony and muscular abnormalities below the surface of the palate." A bifed uvula is basically a split uvula so it looks like I have two uvulas (the thingy hanging down in the back of your mouth). I also have a tied-tongue which I didn't discover until I was 13 and my mom asked me what I was doing. When I told her I was sticking my tongue out at her she looked shocked and said, "but your tongue is barely out of your mouth." It turns out all those years when I was sticking my tongue out at her, she had no idea!
After a stint in the incubator I was sent home from the hospital to wear doll clothes and doctor's masks instead of diapers because they didn't have preemie diapers back then. While photos show me quickly catching up in size, my health went in the opposite direction. I had so many ear infections that I ended up having my first set of ear tubes inserted via outpatient surgery before I was one years old. Throughout elementary school I ended up having six sets of ear tubes or six sets of surgeries before I was nine years old. Between the viruses, constant ear infections and sinus infections, I was home sick ten times more than the average kid. I always felt like a stranger when I returned to school after a week off, here or there. My parents had to work so I would have babysitters from different services watch me when they couldn't take off any more time. I didn't mind and I'm sure, after a while, I probably preferred to be home reading and watching tv than awkwardly trying to fit in at school with kids who had no idea what it was like to be constantly sick. I think that's when my love of film and music started. You can be anyone you want to be in your imagination or when you're lost in a movie.
As a preschooler I had to go to speech therapy because my hearing had been affected so much during the years when a baby would normally learn language and communication. I would only say the beginning of words because I couldn't hear the rest. Thank goodness the speech therapy was successful because I like to talk (in case you can't tell)!
The sinus infections eventually led to two surgeries in high school in which my caring friends made me cards and came to visit while I wanted to hide under a rock. During the first surgery they packed my sinuses with loads and loads of gauze. Imagine every empty space in your head being filled up with gauze while it tries to heal from being sculpted (no, I didn't get my nose done-- I wish I had while they were at it!). I'll spare you the disgusting details of that healing process. To top it all off, I was already allergic to most antibiotics and the one they gave me after the surgery also caused a serious breakout of hives. I think at that point I only had two antibiotics left that I could take (now I have practically none).
Due to the constant sicknesses and allergic reactions, I had plenty of self-pity days, especially when it came to having crushes on boys because my self- esteem never quite recovered from feeling different. I felt like the odd-one out; like a lab rat that was sometimes freed to go play with the field mice. I wanted to be like everyone else so badly that I only talked about my health problems with my closest friends and was super uncomfortable when people asked why I missed school so often.
Most of the time I dealt with my sicknesses pretty well. I knew how to speak "doctor" and how to fight for better care. My mom taught me how to speak up for myself and to always get multiple opinions. I believe this has saved my life multiple times. Generally I would recommend listening to your doctor and not self-diagnosing but, I have to say, research and persistence saved my life over-and-over. So I think there is a fine balance. If you ever have mysterious illnesses or conditions that aren't being diagnosed properly, you may need to be more proactive. There is no Dr. House (although I wish there was!). Rarely is there a doctor who will go the extra mile and stay up late researching your mysterious illnesses or figuring out a holistic way to treat your health problems. I have had a couple but most give up after their first attempt fails. Just like therapy, you have to find the right health care providers for you. Ones that will listen and, when needed, go that extra mile to fight for your health. It's always been hard for me to listen to friends or family talk about health problems when they aren't being proactive about getting the care they need; especially if their doctor isn't providing a solution.
I tried not to let me poor health keep me from doing what I love but I also pushed myself beyond what my body would allow. My junior or senior year of high school I was in multiple plays at the same time and I remember being so sick with a fever of 103 and feeling exhausted. I gathered every ounce of energy I had to play the part of Kathy Selden in Singing in the Rain (Debbie Reynolds in the movie version) and then collapsed afterwards. This happened over and over again during performances in college and beyond.
I wish that ear and sinus infections were my chronic illnesses. Unfortunately my dastardly immune system was a small piece of the puzzle. I've struggled with autoimmune hypothyroid disorder, fibromyalgia, migraines, meniere's disease, asthma, hearing loss, tinnitus, and more. I'll save the rest for other posts including how I treated one illness and ending up alleviating several others by accident. I have learned a massive amount from all of these illnesses and hope what I have gone through helps others find relief.
In the last few years I have more-or-less moved completely away from Western medicine to treat colds, ear infections and sinus infections. Probiotics, elderberry extract, garlic and a few other herb blends have kept my immune system in much better shape the last few years. In addition to the a big lifestyle change that I found helped improve my overall health, I have found that sleep is key. Anytime I go multiple days in a row with too little sleep, I end up getting whatever childhood illness made its way home from school that day. Do healthy people know how lucky they are? Sometimes I forget when I go a full month with no health problems so I would imagine many take good health for granted. I thank my lucky stars every day that I'm walking through this world without a virus or chronic illness flair. Now I realize that being sick doesn't mean I'm dying young. It does mean that I have to make the most out of the days I have left and appreciate each and every one of them. Life is too short to let my illnesses define who I am.
#chronicillness #sinusinfections #earinfections #submucosalcleftpalate #bifeduvula #surgery #positiveoutlook #lifeisshort #healthcare #advocacy #selfadvocate #doctors #eartubes #probiotics #tonguetied #diagnosis #parenthood #childhood
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