Sikcell: People living with Sickle Cell

We still Hope

Why must we be treated like criminals or addicts?

I don't know about you guys but I am pretty fed up with hospitals and doctors. One minute they are telling me they believe my pain is real and other times they are telling me its all in my mind. I have had my kidney since 2015, before my kidney my pain was manageable because I was on things like Ibuprofen. But now since I have a new Kidney (Thank you daddy!) I can't have many things, so right after surgery they put me on Dilaudid but now 3 years later your telling me its my fault im on these meds? Or since im not a cancer patient I cant get medication that will decrease my pain? I fight myself to go to work, by the time I get home my legs hurt so bad I cant walk, the pills don't work much anymore and the doctors are now refusing me treatment. I was told I go into the ER too often when my doctor has a way I don't have to visit and ER because he made up the home treatment center and even enrolled me into it but says its not suppose to be used every month, like once every six months or twice a year.

Right now I am currently in the hospital because I got so sick at home I was running fevers and having other symptoms for two days or longer but I tried to not go to the ER because I was afraid one of them would send me home and say there was nothing wrong with me. I knew I felt horrible because at times when my levels drop I start passing out at random times but I was awake for 3 days straight, and I couldn't drink much. These hospitals and Doctors are really making me feel some type of way, they don't listen...why would I waste my time sitting in an ER if I wasn't in extreme pain just because im not crying or look like im hurt doesn't mean its not there. I have just developed a very good mask to put over so people weren't all in my business asking me every five seconds if I was alright. I understand people just want to help but sometimes my mouth hurts too much to speak, or my head hurts too much to hear my own voice. Why am I being treated like a criminal when all I ever wanted was to not be in pain and spend my days working and writing.

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Comment by candace brinker on May 7, 2018 at 10:17pm: We also have to realize....unfortunately they have the upper hand when we go to the ER and admitted. So it no point of yelling or arguing with them. It’s sad I know!

Comment by candace brinker on May 7, 2018 at 9:11pm: Basically because Sickle Cell is a black disease...that pretty much rely on opioids to relieve extreme pain. They’ve never felt our level of pain....so they don’t care. Therefore because we consistently need pain meds and we’re black, we must be addicts!

Comment by Ebony Ravenell on May 2, 2018 at 2:48am: Hey Ali, Hows it hanging! Yea im here in Philly, and they say my doc is the top adult heme person to go too but its become clear to me now that he doesn't give a damn about me. When I was released from the hospital he told me he wanted my levels to go down to 5.0 (Hemoglobin) before he would transfuse me. Whenever I go that low I get so pale, I am barely awake, and the last time I went out like that I didn't remember where I was going, what I was doing, and other things. I am trying my best to find someone who will take me seriously, I have things in this life I want to do and he thinks im just going to roll over and quit I believe he has the wrong idea about me. There are a lot of reasons people call me Wolf, one reason is when I have a goal I go hard to get it done, others is I have a nasty temper and a very mean growl if im pissed off otherwise I am a gentle if im not disrespected. At one point he wanted me to reject the kidney my dad gave me and live my life on dialysis, I don't know about anyone else but Dialysis for me was hell. So if anyone is in Philadelphia the west side and have any easy options please feel free to shout them out!!

Comment by Ali on May 2, 2018 at 12:32am: Hello Ebony, I'm sorry to hear what you are experiencing. I too have experienced attitudes from medical personnel who treat sicklers like drug seekers. I would suggest that you find a new hematology group. My doctors know me and how to treat my crisis pain and all the resulting damage to my body. He always warns me of things to look out for and says call me as soon as, don't wait. I don't know if you are here in the US and what state, but I'll say again , you need better doctors. I tried going to a new doctor just because he was closer to my house and so was the hospital. It didn't work because they would discharge me from the ER and not keep me to treat the crisis. I only went to him for about six months.

Ebony, I hope that you feel better soon and advocate for yourself. Don't let them intimidate you.

Comment by Ade Dotun on April 26, 2018 at 9:42pm: So sorry to hear what you’re going through Ebony and I hope you feel better soon. My sister and I who both have sickle cell have experienced this type of treatment as well and it’s so frustrating. All we can do is continue to advocate and hope things will get better