I'm sick and tired of being sick and tired!!!!!

I'm a 30 year old mail, I've had Sickle Cell trait all my life & have experienced being jaundice, episodes of intense pain in my lower back/spine ribs joints and large bones one doctor said it must be a crisis and managed my pain for 3 weeks in hospital but then the next time it happened a different doctor snubbed me and said i was the wrong skin colour to have a crisis, (I'm half cast) it's getting harder to deal with because I cant say to my wife either way what is going on and it is straining our marriage, also when I am in pain I've called a doctor out to my house and he's called an ambulance and asked the hospital to treat it as a crisis, But I'm wondering if any one else out there has this problem?? As I've said I'm 30 now and it's time for some answers!!!

2 Replies

  • you are not alone many of us with trait are getting sick the older we get the sicker i have frequent crisis i finally have a primary doctor and a hematologist that know that i crisis and deal with me appropriately my heme doc gives me fluids in the office as needed and monitor s my bloodwork my primary doc gives me pain meds as needed. i have chronic pain in additon to the crisis at this point i think its bc my crisis went untreated for so long before. if you look up trait on cdc sit you find that they confirm that trait can pain crisis but most docs dont believe it even with clear proof staring at them. there are tons of studies confirming that trait can have some of the same problems as teh full ss diseaase. you need to stick with the first doctor that treated you properly. it is a strain on the marriage but you havfe to educate yourself and then your wife on teh disease. it took a while for my husband to adjust and its still hard but hes doing better with it now. just hang in there. your health is the most important thing so you have to fight and advocate for your self. some things that might help are Noni juice from Only NaturalInc you can get it on line. it has the highest concentration of the active ingredients. chlorophyll either as a liquid tincture which you can buy at whole foods the best on is chloroxygen and or green herb. i like green vibrance but any brand should do hydrate yourself profusely a hot bath or shower can sometimes help and a heating pad. otc ibuprofen can help if all this fails you dont have a choice but to get help bc then you need iv fluids adn iv pain meds or your body will suffer and unfortunately if its bad enough death is a possible out come. so do some on line research about crisis in trait, exercise tolearnce in sickle trait, complicatons of sickel trait and you will start to find proof. there will always be naysayers but you know what you are experiencing is real. god bless you hope this helps.

  • btw are you white? or just light skin? its a blessing if you are white bc teh jaundice will show easier and they will be forced to take you seriously skin color doesnt matter the issue is whether or not you have the sickle gene. that doctor that told you that was an idiot. are you AS or SC or S-thal?

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