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April Fools Joke..not cool

Hello darlings,

In the interest of full disclosure, I must state that I had pain this week. I actually had to call off of work on April 1st. The pains started as they normally did, twinges here and there, L1s, nothing major, and I ignored them, thinking it was a fluke and would just go away.

However it could not be denied and less than an hour later I was shivering under the blankets in L3 pain all over my body. I had to dig through several boxes to get to my pain medicine (it’s been so long, I’d started misplacing them!). I took a Benadryl/Dilaudid mix, 2 Nicosan and some Motrin.

It was so bad…it wasn’t the worst pain that I’ve ever had, but I haven’t had pain in so long that I think I have totally forgotten how bad it could get and how to deal. I was shocked at first, and then rapidly unable to cope, crying and everything. So. Not. Pretty. It was so weird, almost surreal like it wasn’t me in pain…after all, I was at 11 months pain free!

Grrrrr!

The good news is that once the pain meds kicked in (or maybe the Benadryl) I fell asleep and woke up hours later with localized pain in one leg only. That quickly dissipated throughout the course of the next day and by the 3rd I was right as rain, with only my track record tarnished. My body totally played an April Fools prank on me, breaking my 11 month pain free streak!

Looking on the bright side, it could have been alot worse. I could have been in the hospital in full blown crises mode getting pumped full of pints of blood and poked a bajillion times a day. Okay, that does put stuff in perspective. I’ve truly been blessed.

Hope everyone is enjoying this fine spring weather. And to those that have written in, I will be responding posthaste, I just have to wade through tons of correspondence at the moment.

Ciao everyone…hope you are all well.

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Sickle Cell Warrior

Sickle Cell Warrior

Tosin is dedicated to perpetuating healthy and positive messages about sickle cell. Although sickle cell is a subject often taboo in the communities this condition is most prevalent, Tosin's message is that sickle cell is not something to be ashamed of and you can live a rich and fulfilling life with sickle cell. Sickle cell warriors are the most amazing people in the world, with a great fortitude for compassion, willpower and strength.

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3 Comments

  1. bloodnovsky
    bloodnovsky May 29, 13:02

    I was wandering on google when I stumbled on this site, sc warrior. Well am a sickle cell warrior too if I must confess. I suffer painful crisis also. But ever since I was born my crisis has never been the recurrent one, I mean I don’t visit hospital very often. I am 26years of age now and have only taken blood transfusion twice in my life. The crisis that had me got my last transfusion is d crisis that I would never forget so easily. The pain crisis was so intense that the aftermath got my right hip shifted. Now when I walk I limp. After the serious crisis, that was when I got to know about nicosan, and I have started taking the drug. But it won’t take long after that before I got to know about dioscovite. My dilemma now is, can I take both nicosan and dioscovite together, if not which one is better for SCD patient to take between both of them????
    More over I am a law undergraduate of one of the prestigious university in nigeria which is university of lagos. My actual fear is not now, my fear is when I finish from school. I have been told that law practice is rigorous, it has also been portrayed that only the strong can be able to cut his teeth from the profession. My dream when I finish from the law program is combining helping SC patient with my practice of law. What I really want to ask now is that whether law is just too big a job for an SC patient? Again would i also be able to run around like other people free of SCD to make it in the profession? Also, can I also combine the creation of an NGO strictly for SC patient with law practice?? Please I need answers to all these my questions.

  2. Shelle
    Shelle November 18, 04:55

    I have been a warrior all my 35 years. I have 3 kids and all my life I felt people were just preparing for my funeral every time I got a crisis. In the beginning no one believes you and you are often treated as a bother a nuisance or a pest. I was suicidal for 11 years and no one knew. After being constantly told of what I should and shouldn’t do what my limitations were I just put everything to the Lord he just would not let me die all I begged him. He helped me to exceed all the restrictions placed on SCD patients. ( The pain is that excruciating you really want to die and sometimes the nurses treat you as if you are already dead.) I’m from a tropical country so pace my body for tasks. I prepare my own meals that builds my blood as I grew up in the Jehovah Witness faith I never had a blood transfusion or took surgery as my cuts take extra long to heal. I was in remission for 13 years until my body shut down with a cretin of 250 and blood count of 6 I was taking care of my 83 year old grand pa with prostate cancer and my 3 kids and I had a very stress full position at work which were sometimes 10 hrs shifts. My days started at 5 am and usually ended at 11:30 pm at night. If persons or the medical profession knew what this pain felt like they would be more sympathetic. It gives you a phycological strain that you are often depressed and sad. My last hospitalization I found the drugs given at the hospital I attended were not doing anything just a lot of additives and my last crisis was not a painfully one in my joints like I’m accustomed. It was my kidneys then it went on to my lungs until I had 7 specialists at my bed side. I refused a lot of treatment and meds because the staff was ignorant to what it was for and I came out in one piece. My kids made me walk out of that hospital because dying young and leaving them alone especially if they get a crisis is what makes me push so hard to survive. I know how this illness makes me feel inside and out so I just don’t want my kids to go through the same thing. Every time I go to the hospital or clinic they take another electrophoresis changing my status from trait to full blown. I was diagnosed at 7 years old but I had symptoms from 5 but no one ever believed me until I fainted crossing traffic at 7. My teachers , parents didn’t believe me or the doctors they just gave me x rays and put my hand in a sling for 2 years. Here I am now approaching 36 yrs in a couple of days and still battling mentally and physically. I was played off 2 years ago when because I got sick and its very hard to get a job now and support my family my 2 kids have the trait but my son is experiencing symptoms he is only 8 but he was diagnosed at 7 yes old as well.

  3. Sickle Cell Warrior
    Sickle Cell Warrior Author December 21, 01:08

    @Shelle, we would like to feature your story on the website. Please email us if you approve.

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