Living Beyond 50 with Sickle Cell

Hello fellow warriors and caregivers. My name is Trish and I live with having HB-SS.

My life with sickle cell

My sickle cell was discovered at the age of 10 at a children's hospital. I was totally misdiagnosed when I was younger at a hospital that saw adults and children. The doctors told my Mom I had a bad back. It took a traumatic experience for my mom to know something more was wrong.

I have had it easy growing up with sickle cell. I could take my pain med 1 time, go to sleep, and wake up and it was all over with. Hardly any hospital visits or transfusions. As I have gotten older the SCD started getting a little harder on me. I would usually get a warning in time enough to get meds in my system, but then the last 10 to 15 yrs I would wake up out of my sleep in full blown pain having to suffer while waiting for the med to kick in; not every time though.

Things I have learned

I want to say that you can try to live as long as possible with this horrible disease but it has to be a big effort on your part. Here is what I believe you can do to make that happen:

1.) Do your best to avoid the things that set off a crisis, it's not worth it.
2.) Rest and hydration are key. Stop! Don't wait for your body to sit you down.
3.) Stress is real and for me, I can go into instant crisis. I've learned to let stuff roll off my back, get into a new gear, seek God and it will work out.
4.) Keep your appointments. Talk to your doctor, don't just let them have input when it comes to your body, speak up and have some say. You should know your body better than anyone.
5.) Don't abuse your meds they are looking at that and labeling you and the rest of us as a matter of fact. Seek help if you need it.
6.) Try to enjoy every moment given to you. Be kind and patient to people you will be so blessed.
7.) Don't abuse healthcare professionals. Kindness goes a long way.

Making each day count

I've been through a transplant, bone cancer removal, osteomyelitis in my leg bone, home dialysis and now my spleen is dying. But, guess what? I've been on 10 Caribbean cruises, just finished a 10 rides in 30 days train pass from the west coast to the east coast, forced to retire early but still work part-time on my good days. Another thing: there is nothing wrong with seeking counseling if dealing with illness gets you down. Caregivers you have to be patient; this disease is unexplainable and the pain is indescribable. I say this: embrace life and the cards dealt. I have sickle cell but sickle cell don't have me. Be Blessed everyone!

Cruising May 2022

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