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Nikita Ussin

Living with any medical condition is a test of both faith and endurance.  Depending on the condition, life can be a daily obstacle.  However, it is crucial to be determined to persevere past any pain, discomfort, or setback.  After every trial, there is a story of love and triumph to be told.

I am a student living with Sickle Cell Disease.  As a child, I was not able to do all of the things that other kids could do.  Simple, enjoyable tasks such as running, swimming, and traveling to a new city would end in pain and sadness due to my condition.  I was still learning my condition and how to maintain and prevent pain.  I became afraid of telling people that I had Sickle Cell because I was afraid of what others would think about me.  There is a plethora of pitfalls when living with a disorder.  Some of these disorders have nothing to do with the pain already caused by the condition.  One such pitfall is the lack of true relationships with friends and ‘potential’ mates.  There was a time in my life where I felt no one would truly love me.  I have been shunned for having Sickle Cell, and it caused me to not mention having it to anyone.  Not only did I suffer from being shunned from nonprofessionals, I have heard doctors and nurses express to each other their disdain for Sickle Cell patients.  One nurse went so far as to tell a resident not to deal with us Sickle Cell patients because we are difficult.  Her words hurt yet motivated me to continue to be the best patient.  I wanted to show the doctors and nurses that we are pleasant while in agonizing pain and fighting for our lives.  One of the many setbacks of having Sickle Cell is dealing with the pain.  It hurts me to see my loved ones sad because they are not able to help me.  I have had pain that would halt me in my tracks.  Sometimes I would have to revert to crawling or dragging my legs on the floor because I cannot use my legs.  In October 2007, I had the worst hospitalization of my life. I suffered with pain and a blood count level that was too low.  After receiving a blood transfusion, my body rejected the blood, and I experienced my first of many seizures.  The doctors worked hard to keep me alive, and my family and friends rallied behind me in prayer.  I was unaware of everything going on for three days.  After coming off of the medications, I suffered with severe headaches due to a blood clot on my brain.  This led to repeated seizures in two days’ time.  When I was well enough to leave the hospital, the doctors were not sure that I was going to make it to the new year.  During my recovery time, I was depressed, scared, and felt alone in my suffering.   Adding insult to injury, I broke out in a rash of dark spots as a reaction to the medications I was prescribed.  My self-esteem, already below average, was shattered.  It took me years to regain my confidence in myself.

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One of the triumphs I have come to appreciate is being able to educate others on my condition.  I find individuals to be more receptive to learn about Sickle Cell when communicating with a patient.  Not only am I able to educate on Sickle Cell as a disease, I have the opportunity to share my trials and triumphs.  It makes me proud of how far I have come, and my motivation to help others is sparked each time I tell my story. It’s a way of being an advocate for a cause that is important to me and those close to me.  I am honored to have had the opportunity to share my story of adversities, triumphs, and pain management with hematologists, nurses, patients, families and advocates.  Growing and succeeding in life with Sickle Cell has propelled my desire to continue to advocate.   My goal after graduation is to a mentor to adolescent and college aged Sickle Cell patients.  Additional blessings that this disease had brought into my life are the abundant amount of people with whom I met and built meaningful relationships.  There have been many doctors, old friends, families, and loved ones that have come to my aid in my time of need.  Relationships have been created, repaired, and strengthened because of this condition.  In my trying times, I have been able to identify those who did not have my best interest at heart.  I’ve learned that my medical condition does not make me anything but stronger.  Those who have turned away from me were not strong enough to be around, and this is just fine.   Besides strengthening relationships with other people, I have gained a better relationship with myself.  I have learned more about pain management.  What I am most proud of is learning how much fight I have inside of me.  I have battled past seizures, being told I wouldn’t make it past a certain age or hospitalization, and surgeries.  No matter what has happened in my past, I remained strong in my faith and will to survive.

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To those suffering with Sickle Cell, I would first you to seek spiritual motivation and stimulation.  A strong connection in your faith is the best way to stay grounded when you are going through your tough times.  I also advise paying attention to your body as it is essential to controlling pain.  We suffer from a chronic blood disorder.  The mentality I have used for years is that anywhere the blood flows is affected.  Therefore, it is important that we take care our heart, mind, and body as best as possible.  Proper eating, hydrating with water, and exercise is essential.  Before exercising for the first few times, pre-medicate with an anti-inflammatory.  Follow up with medication after the exercise as well.  Listen to your body to know how much you should exercise.  When you feel pain in your day-to-day activities, take a break.   Use this time to rest and not focus on the pain. Keep a small low dose pain pill on hand that you can take to combat pain when it starts.  This way, you may not have to suffer through pain all day.   Always focus your mind and heart on the good out of your day, even when it is bad.  Do not be afraid to have a voice.  You know your body and pain tolerance better than anyone else.  Let your doctors and nurses know how you feel, and work to build a relationship with them.  Their job is to help you, and your job is to help them help you.  Build a strong network of loved ones around you. This is key, especially in those times when you cannot voice your own opinions.  You should always have someone who knows your condition so well, they can tell the doctor when you are not comfortable, your likes, dislikes, and medications.  I make it a point to inform at least three people of where my pain is located and what medication I have taken each and every time there is pain.  If I should require medical attention, those individuals are there to provide assistance if I am unable to effectively communicate.  Use your resources.  Sickle Cell centers across the country are willing to help a patient learn how to cope with their pain.  Look into support groups on social media if necessary.  Contact your doctor about places or people who may be able to provide support.  You may be able to reach out to another patient. Lastly, appreciate what you have.  Remember, every setback is a setup for success.

 

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