In a previous column, I mentioned some of the good things that happened to me last year.
This included a decrease in my iron levels and my subsequent switch from Desferal (deferoxamine mesylate) subcutaneous infusion pumps to Exjade (deferasirox) tablets. This was one of my greatest highlights of 2020. I have battled iron overload as a result of my blood transfusion program for years, so it was nice to finally make some progress.
However, shortly after publishing my “good news” column, I received a call from my clinical nurse specialist. She informed me that my iron levels had skyrocketed, and there was a chance I would need to revert back to those dreaded pumps. Needless to say, I was quite disheartened and a little scared. I felt disheartened because my progress appeared to be extremely short-lived, and scared because of the complications that excessive iron can cause.
This demonstrated the reality of living with sickle cell disease, or perhaps any chronic condition. I realized that we can do everything that is required of us, including looking after our body and adhering to our medication and treatment regimens, and still not see any long-term progress in our health or quality of life. As a patient, it was a stark reminder of how quickly the situation can change, and how much is outside my control.
I know this feeling too well. Many times, I have done all that I can, followed the guidance of my specialist team to the letter, and practiced caution in my daily life to avoid any potential triggers in the hopes of seeing some improvement in my health to no avail. I remain acutely aware that I have very little control over my health outcomes.
Even as I write this today, I am still saddened by how things have played out so far. Living with sickle cell means a constant desire to finally hear good news about one’s health, to hear about progress. After being fortunate enough to receive such good news, particularly in the wake of some tough years, I really wanted to bask in it.
Sometimes I feel like an emotional yo-yo. One moment I am up, and the next I am down, all while figuratively being in the hands of others. I understand that my health is not entirely in anyone’s control — not mine, not my doctors, and not my specialist team. I try my best not to allow my diagnoses to dictate my mood or approach to life, and often I am OK, though it gets hard. I think this is one of those hard times.
When I start to feel down like this, I try to look at my life on a macro level. Yes, sickle cell brings me to some really low points, but I have a good life. Although I am forced to alter the way I live to accommodate sickle cell and try my best not to exacerbate my illness, I am still able to live an extraordinary life. I have built up plenty of wonderful memories and experiences over the years.
This helps me to persevere and not give up at each hurdle I encounter, even the extremely high ones. I always liken my health to navigating an obstacle course. It is extremely difficult to jump through hoops of fire and leap over high barriers, especially when I am tired from overcoming the previous obstacle. But I try my best to look inward and find the strength to keep pushing because I cannot give up, and I do not wish to have a pessimistic outlook on life.
So, if I fall four times, I will try my best to stand up five times. While I have even one ounce of strength in my mind and body, I absolutely refuse to let sickle cell steal my joy. Hopefully, I will come back with news of improvement and a reduction in my iron levels — soon!
Note: Sickle Cell Anemia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Anemia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sickle cell anemia.
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