I'm Charity

and I am my #1!

Type 1 & Then Some…-Living with Multiple Chronic Conditions On Top of Diabetes & Overcoming Loss All In the First Year after Diagnosis. My story of navigating chronic health conditions begins when I was four years old (I am now 30 & have had Type 1 Diabetes for 15 years). I didn't know "juggling" was to be a profession of mine. But it began when I was diagnosed with Complete or Third Degree Heart Block. This is when the impulse generated in the sinoatrial node (SA node) in the atrium of the heart does not propagate to the ventricles. Basically the electrical impulses of my heart do not communicate properly. Today I have a pacemaker for this to keep my heart from growing too large, and beating correctly. As a child and still today this condition has always caused me great anxiety and hyper vigilance regarding my health. At age eight my pediatrician diagnosed me with hypothyroidism and also a genetic condition, which only affects females called Turners Syndrome. Turners Syndrome is when a sex chromosome (the X chromosome) is missing or partially missing. It can cause a variety of medical and developmental problems, including short height, failure to start puberty, infertility, heart defects, certain learning disabilities and social adjustment problems. In order to help my growth I had to take growth hormone injections for multiple years and also had to be on hormone replacement therapy in order to go through puberty. I recall these diagnoses not affecting me mentally and emotionally to the extent my heart condition diagnosis had and still does. I remember thinking to myself “Ok this is quite a bit to deal with I must be done with getting diagnosed with chronic health conditions at this point. I mean I am only 8 an have all this already!!” This however was not to be the case…. In June of 2001 after much consideration, it was decided the best course of action for the worsening of Scoliosis that I had been having monitored had gotten to such a severe point, that corrective surgery was the best course of action. The surgery was long, and complex. My spine would essentially be broken and then re-fused back together along with two 18” rods placed down either side of my spine. Due to my current medical conditions my parents chose Boston Children’s Hospital as the place that could best manage all my medical needs. The surgery went very well, and was a success. I came out with no complications that the surgery had indicated were possible. As I spent the summer recovering my large intake of water was not noticed by my parents (both practicing Registered Nurses themselves) as anything strange. It was not until one day when the only thing my body would hold down was water that my parents became concerned. Off to the pediatrician I went with my dad, thinking “This is probably some stomach bug, or flu I picked up.” After having lab work done, & giving a urine sample the doctor came in. “There is an excessive amount of sugar in your urine…” she said. “I would like to use the extra blood we have left from your lab workup and do a glucose test.” “Ok…” I thought in my head. “Covering their bases, I’m ok with that. My mind had definitely not come to the awareness yet that they were concerned about, and testing for Diabetes. My father smiled at me (he was always such a positive force in my life and would tell me everything would be fine whatever the situation might be) gave his consent to the doctor, & again we were left waiting in the exam room. Once the doctor came back in she sat down wheeling her stool closer to my dad and me. “Your glucose test came back at 660 mg/dl,” she stated. “We think you have Diabetes.” If I had a mirror my eyes probably looked like two giant wormholes out of a Si-Fi movie. The first words out of my mouth in a dazed like state, after hearing the word “Diabetes” were “Five weeks….I JUST had surgery only five weeks ago…” We were instructed by my doctor to go see a specialist the next day. After walking out in silence; my dad doing all of the final talking with the doctor I looked at him and stated, “I don’t believe this… I mean I have all these other health conditions…. How many more can I GET??” at this point my feelings were more of frustration and anger then anything else. I was brought up in a very spiritual household so my next question was why God had decided that I was “The Chosen One” for what I viewed at the age of 15 as “every chronic health condition someone could possibly get.” Shortly after my diagnosis of Type 1 Diabetes, I was also diagnosed with Celiac Disease. I not only had to learn about living healthy as a diabetic, I also learned how to navigate being a gluten-free Diabetic. Doctors believe that the stress of my spinal surgery is what set off my developing Type 1 diabetes. My endocrinologist stated due to my diagnoses of Turners Syndrome it was likely dormant in my system & something I would get it was just a matter of when. Having multiple health conditions has brought many perspectives from multiple specialists. I have reframed the multiple doctors in my life as a positive. I get to here multiple opinions and research from more then just one doctor. My chronic conditions (especially my Diabetes and Heart Block) have caused me to develop a more health conscious mindset, and allowed me to be much more aware of my body and what it is doing with the regular monitoring I receive. I have learned to advocate for my health, and my needs at an early age, and my awareness of how my body feels, and when it is off has grown incredibly from having to monitor myself so closely. I never knew how much I could handle before my diagnosis with Type 1 Diabetes. My diagnoses stressors and feelings of being overwhelmed were quickly forgotten when we found out my dad had terminal Brain Cancer. My best friend, soul mate, biggest supporter was no longer physically going to be there for me. Within my first year being diagnosed with Diabetes, my father passed away. If I had not learned yet about was I was capable of handling, I surely found out when I lost my dad. I knew then that I was going to take on these multiple health conditions and overcome them, not let them overcome me. I was going to live a fulfilling life, a life my dad had always wanted for me. 15 years after my diagnosis I have the first A1c reading below 6%. I may have multiple health issues, but they don’t stop me, and with love and support I manage them all successfully. What I did not think I could do, I have found the perseverance and strength to do. I hope that my story can bring hope and strength to others, and that it can relay a real life person juggling not just the complexity of diabetes but of other health conditions. I have my Masters in Marriage and Family Therapy, and I currently work as a Mental Health Worker with special needs children. I hope to become a bigger advocate in the diabetic community as well as in the community living with chronic illness and anxiety. This is the first time I have shared my story to the public. I dedicate this act of bravery to my father who is always with me every step of my journey. ~Charity Shuster-Gormley

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