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Inspiration For Life's Difficulties
Living With Hereditary Angioedema & Adrenal Insufficiency
Kayla Marie Sherrod |
A Tribute To My Doctors
A special thanks to Dr. Ronald Jorgensen, MD, of Arizona Asthma & Allergy Institute. His compassion, patience and understanding of allergy and immunology led to my diagnosis and proper treatment. I could not have traveled this path without his constant help and support. I also wish to thank the staff at St. Joseph's Hospital for their excellent care during my attacks, and for their part in my diagnosis of adrenal insufficiency.
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Opinions contained in this article are based on my personal experience. Contact your physician for appropriate medical information regarding your personal case.
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My Gift To You: My Story
By Kayla Marie Sherrod
Both hereditary angioedema and adrenal insufficiency are underdiagnosed, and my goal is to help educate the public and the medical community. It need not to have taken 10 years to obtain my diagnosis.
Getting the correct diagnosis is the first step in getting proper treatment.
My name is Kayla Marie Sherrod. I am a 19 year old woman who has had to give up her dreams, her style, her future career, and several other things. I went from running, dancing, and cheerleading to currently undergoing diagnoses, and my life has been turned upside down. I was unfortunately given horrible health issues. However, it is due to my champion attitude, amazing family, knowledgeable doctors, and best friends that I am still going today. I have come to the conclusion that just because I was told I would not dance or cheer again, which were my all time favorite things to do, did not mean I could not make a new dream. I am a champion at heart and have the personality to conquer anything thrown at me. No longer being able to be a champion at cheer and dance does not mean I cannot find a new thing to be a chamption at. I am here today not to share my story with the world for pity, but to share my story so I can reach out and help others out there going through similar situations. I want to bring my craft and sewing ideas to those of you who want to improve your comfort and show your style because being disabled or sick does not mean you are not still you. You can still show your style through crafty ideas.
My story begins all the way back in January of 1991. I was premature by one month. I was placed in an incubator because I could not maintain my temperature or drink from a bottle on my own. Doctors said it would be at least a couple of weeks before I could go home, but I am a fighter and even though I was a baby that was unacceptable for me. The next day the doctors called my mom up and said I could come home after all. Almost immediately I started having seizures. I went through physical therapy, speech therapy and occupational therapy to help catch up developmentally plus took medication to control seizures. I was released from all programs at age 2 and was able to stop all medications. At age two my neurologist said that how well I did physically, only time would tell, and there were no guarantees. I may walk but not run. I may run but not ride a bike. Our only option was to wait and see. My parents were ecstatic when I walked, ran, and started gymnastics and conquered the balance beam without any problem. Besides my hypersensitivities, life was wonderful until around age 9.
At age 9 I started having horrible attacks of abdominal pain. My abdomen would swell up until I looked several months pregnant. I could not even drink water without pain, and I would scream in agony as I curled up into a tiny ball. I would be hospitalized up to a week at a time to control pain and maintain fluids. As I got older my attacks started coming more frequently until I was having one major attack a year. In between my attacks I was perfectly fine. I ran miles a day, I was a dancer since preschool, a varsity Cheerleader, and worked at a Salon. I would have days when I did not feel so great but it was not severe and would subside within a few days. Over the years I was hospitalized 10 times and new symptoms began to appear the older I got. My new symptoms include: bladder, bowel and digestive problems, horrible pain in the bones of my legs down into my toes, muscle weakness in my whole body, tremors, dizziness, fainting, loss of memory, pale white face, heat sensitivity, and pain in my eyes if the light is turned on. In just the last year I was hospitalized five times.
Sadly, after my last attack, I have not recovered as I always did in the past. I am now undergoing further tests and treatment. So far I have been diagnosed with Hereditary Angioedema, Adrenal Insuffiency, Fibromialgia, and Chronic Anemia. It took ten long years to get my diagnosis of Heredity Angioedema. Fortunately, there is now treatment. I go twice a week to receive Cinryze from an infusion center, through my port. It replaces the C1 that I am lacking in my blood. I am still battling Adrenal Insuffiency, Fibromialgia, and Chronic Anemia. However, with the help of Cinryze and my current doctors I know I have a much brighter future.
Before I started my treatments I was in a wheelchair for one year. While I was in the wheelchair I decided that if I was going to ride, I would ride in style. I pimped my ride with bling, custom fabrics, and various other craft items. Everyday simple things have become a struggle for me to do; therefore I am coming up with cute and fun ways to make these everyday things possible to be accomplished. Keep looking because I will have new project ideas for expressing yourself coming soon!
I have experienced things that I wish on nobody. When you start to go through all these things you realize it is the little things that matter. I have had nurses who did not believe me. One of my worst experiences was when a nurse decided she thought she knew what was best for me. When my parents left my hospital room and I went on my walk with the nurse, she ripped my walker out from under me, I fell and my IV got twisted up inside me. My family heard me yell and came back. As my family came around the corner the nurse decided she wanted to be an actress. She immediately grabbed me and said, “Oh honey I am so sorry you fell”. Then when I told my family what really happened the nurse denied it and told the doctors I was crazy. Without my mother’s permission they placed me on mood stabilizing medication because they thought I was “crazy”. Not long after a psychiatrist took me off the medication and said it was not in my head and I truly was sick. The medication I had been put on made me feel sad and upset for no reason and I gained a ton of weight. All because of one bad nurse, I had to diet and exercise and try to be normal again. Experiences like these happened plenty of times throughout my life. I have seen, heard, and experienced things I would not wish on the worst of my enemies.
When I was younger I hardly told people about the problems I was facing, and when I did I never told them of the actual extent I was experiencing. I wanted nothing but to be a normal kid. Every time I missed class or was gone in the hospital I would come back and say something like “oh yeah I had a bad case of the flu so I was absent”. I did not want kids to treat me like I was “different” and “weird”. I went to great lengths covering everything up. However, now it is too big for me to cover up and I want to help other kids out there know you CAN make it through this and still be the amazing person everyone knows you are. I am a firm believer that God gave me this for a reason. He did not do this because I did something wrong and needed to be punished. God gave me these problems so that I could help others out there who need guidance, information, and inspiration. Throughout the years people have wanted me to see therapists to help me deal with everything happening but I always said “I do not want to talk to someone about my problems because how can they really give me advice when their worst problem they have faced was probably having the stomach flu?”
I am here now to answer any and all questions you may have. I have shared my story so you can see that I have been through it so the words coming from me are honest and true. I will NEVER sugar coat a story just to make you feel better. I will always keep it real and tell you how it is going to be. This is a long road I have been traveling on for several years. The journey is still going. I will keep you all updated on any changes. GOD BLESS.
Sincerely,
KayBabii
Kayla Marie Sherrod
A 19 year old survivor still fighting for her life because she knows it IS worth it.
NOTE:
My comments are based on my own experience. I am happy to share inspirational advice. However, I cannot provide medical advice, nor can any of my words be taken as medical advice. See your own physician for medical information and advice pertaining to your own personal health. October 2010 |
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