ABOUT Tina Kay

To know me, Tina Kay, you would know that I am a multi-facade, multi-layered, and sometimes even a little complicated.· I look at the world with a different set of eyes that see God’s goodness in everything all around me.· Despite the doctors’ reports, x-rays, Cat scans and some days a body that is in constant turmoil; I still know in my heart that I am in this space at this particular time to make a difference in the lives of others.· My plan is not always the right plan and makes me realize God planned long ago these, my days, for me.· So I accept God’s grace, mercy, love, and challenges as His way of using me to the benefit of and for all of His people.

“Are you living, or are you existing?”· I love this quote because over the past three years as Sickle Cell Disease has begun its attack against my body and mind, many days I feel like I am just here, existing.· I think I am a type A personality, always needing order, a definitive plan, and structure.· However, living with Sickle Cell there is no structure; your days are determined by your body.

During my childhood, I lived like any other child—not knowing or feeling any difference between myself and other children.· I played outside, participated in many sports and school activities and was an over achiever and often times found myself in positions of leadership.· There were only two instances that I remember quite vividly as a child having pneumonia and receiving blood transfusions around the age of 8 years old.· The other time was in college, in a small town, where doctors did not know how to treat this disease.· I had an awful urinary tract infection that caused me to urinate blood.· The doctors sent me home to urinate overnight in a bag.· By the time my mother rushed me home from college (a 2 hour drive) I needed a blood transfusion.· My college days were extremely stressful and I spent many days in the University’s infirmary every quarter during finals to receive IV fluids, to avoid hospitalization.

I spent 10 years working in the insurance industry as a claims adjuster.· The first six years I traveled all over the country working in cities that had been damaged due to a disaster/catastrophe—I was never sick during those years except for maybe 2 times.· My last 4 years, as a claims adjuster, I handled claims over the phone and did not care for the job because the stress level was extremely high— there were quotas, bad attitudes from customers and coworkers, working in a cubicle, and people came to work sick causing me to become ill because my immune system is compromised due to SC Disease.· My last days as a claims adjuster, I could not carry out the basic functions of my position, so I was retired by my company as disabled.

Never in a million years would I have imagined not being able to do simple things in my life.· For instance, combing my hair, cooking a meal, driving myself, washing my hair and body, feeding myself, having children, and putting on my clothing just to name a few.· Life is so precious and taken for granted until something in life causes you to pause and take account of what is really important· and what things or issues are really worth being mad about, fighting for, and spending way too much energy on.· Every day that I wake, I have to do things based on how my body feels for the day—it could mean I stay in bed all day, stay in the house all day, or actually go and have fun.·I have no control and this drives me completely insane.·

It irritates me when people make off hand comments like, ‘You don’t look sick’ or ‘You look good are you sure you are sick.’· The one thing I can control is my outward appearance and this is just apart of my personality, a need to be in control of something, and my appearance is the one thing I can control.·

Currently,· I have bone infarcts all over my ribs, avascular neucrosis in both shoulders (where the bones are slowly deteriorating), bursitis in my hips, blood clots in my stomach, complete loss of hearing in my right ear, and to be determined if I have lupus or rheumatoid arthritis in my hands and feet. I also contracted Hepatitis C due to blood transfusions in the 80’s and early 90’s.· It takes about two hours every day that I wake for my body to respond to pain medication so I am able to move out of the bed.· Despite, the goings on in my body, I feel many days like there is a terrorist in my body, waging war and I have no defense to stop it.· I love my husband so much because he is always by my side as a best friend and whatever else he needs to be.· My family and friends are always at my beck and call to do whatever is needed.· Without the love of family and friends I don’t know that I could make it through some of my worst days.·

I’ve spent many days in the hospital.· I am thankful that President Obama is calling, pushing, and putting into action a new health care plan.· I worry about the ceiling on my health insurance policy, exorbitant amounts I pay for the deductible and out of pocket costs.· I also worry about being dropped by my health insurance carrier because I have a chronic illness.· These are the things that remain at the forefront of your mind when you are often ill.· Whereas, if one has never suffered through any type of health issue or witnessed a loved one suffer, one can not fully grasp the need for health care reform.

I journal to help my mental state; I also, create and design jewelry as a release that is therapeutic for me.· My writings have been compiled into a book to help others who have any type of struggles in life.· The endorphins that are released during my therapeutic hobbies help the pain to subside for just a little while.·

I have so much hope and faith that a cure will come to fruition soon for adults with Sickle Cell because a cure for children with Sickle Cell has already been discovered.· They say the life expectancy for adults with Sickle Cell is approximately 40-50 years old.· People living with Sickle Cell are like the forgotten few left alone to suffer in silence.· There is very little attention given by the medical community to this disease.· There are very few research dollars spent on SC Disease with it being a global problem. In the United States it is estimated that over 70,000 people have sickle cell disease and about 1,000 babies are born with the disease each year in America.· It is also present in Portuguese, Spanish, French Corsicans, Sardinians, Sicilians, mainland Italians, Greeks, Turks and Cypriots. Sickle cell disease also appears in Middle Eastern countries and Asia.· This is not a disease where I did something to contract it, I was born with this disease.· My greatest fear is that I will not be able to do or see all the things in life I hope for before my life comes to an end.

Not only does the African American community but the wider community remain quiet, clueless, and uneducated about SC Disease.· I feel as if I have to be my own advocate, because no one else is speaking on my behalf nor is anyone going before the masses to draw attention to this disease like attention is given to other diseases.· My hope is the larger community will put this disease on their radar, so healing and wholeness can begin to dwell in the lives of those with Sickle Cell.