It truly doesn’t seem real my 42nd birthday is just a few weeks away. I can remember the day my dad left my hospital room when I was diagnosed with this crazy disease. They told my parents I would not make it to the age of 19!! Well it looks like those doctors just did not understand all the facts.
I was five years old when I was diagnosed and I remember that pain ….that first severe and very painful full blown sickle cell crises hit, I thought God was taking me to Heaven and I was fighting him to stay. Every muscle and bone in my little body hurt. Pain I never experience before. I just wanted it to stop. Little did I know many, many, more would follow. Having the disease changed what and who I played with. How I dressed, and my parents keeping me as comfortable as possible.
As time went by I realized I was somewhere in the middle of most sickle cell people. Not always in the hospital, but I had my share of crisis throughout the year. I didn’t even have my first transfusion until I was pregnant with my first child (At the age of 19). And they said I could not have kids for fear of having a crisis during labor. Well I had two. And the doctors was wrong. I had no sickle cell crisis during labor and both my kids came out healthy and strong.
Yes! It has been a very painful road….a painful life. But it is my life and I have attempted to educate myself about my disease over the years to better understand it and learn to live with it. And 42 years later here I am! And not only am I still functioning, active, I try my best to educate as many others as possible with the disease. Along with being a good mother, parent, and the foundation that holds my kids in place.
Turning 42, with Sickle Cell Anemia, means monitoring my disease along with the complications it has caused: 1.) CKD stage 2 (Chronic Kidney Disease 2.) Pulmonary Hypertension 3.) Hypertension 4.) Enlarged Heart…..Yes! I have all of these.
And Yes! It sounds like a lot and it kind of is but its my bag of complications and I will carry them the best I can with the assistance of God. All sickle cell individuals should really get to know their body, love their body,and treat it like the temple it is….And let these doctors know although this is a life long disease , we can improve our quality of life, and enjoy reasonable health most of the time.