Sikcell: People living with Sickle Cell
We still Hope
I was Wondering has any one been told that there not in pain that there just ther for the pain meds?
Hello every one my name is Veon now when i was younger i did'nt have too many problems with sickle cell as far as pain crisis went, But it seem like after i turned twenty things have been not so good. shortly after i turned twenty i got pneumonia and what made it worse i was in a pain crisis at the same time. Well last year alone i went to the hospital over 40 times. Well this year is better but at the begining of this year i went to the hospital and my doctor came in and said that your blood looks good so i dont know why your here, i responded cause im in pain in a respectfull tone. So she said to me i bet you cant wait to get diloted then she left the room. So the nurse came in the room and gave me the pain meds. Well the next day the doctor comes back and she says to me i think your addickted to the pain meds then i went off on her but i kept it respectfull i told her that i have all the pain meds that im receving from the hospital at my house i even have some meds that are stronger. But im not the tpye to take pain meds cause of the way they make me feel i get all loopy like. I have to be crying before i take anything. SO IF THERE'S ANY ONE WHO'S GONE THROUGH MY SITUATION THE FEEDBACK WOULD BE NICE GOD BLESS AND YOU HAVE A WONDERFULL
Replies to This Discussion
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Permalink Reply by *Shawnii* on
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girl yes. all the time. they view sickle cell patients as drug addicts....whenever i go to the ER i get no respect what so ever. My mother is a nurse so I know what should be done & what shouldnt. My mother told me that every time I encounter a problem like that to report it to the state board. Things like that can get peoples nursing/doctor licenses taken.Now a day I barely go to the hospital because where I live they actually have a sickle cell clinic that is made especially for people suffering in crisis. The doctors and nurses are the sweetest and they fight for us everyday.
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Permalink Reply by Veon A. McGlory on
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Yeah i Just got out of the hospital today i go to a different hospital now. Bt what amazes me is that the hemotolgist came in and was like well how long have you had sickle cell now this isn't my hemotolgist i was like since i was born i told him it was a hereditary so he said oh ok um well will go ahead and swich you off of iv pain meds to oral pain meds and get you home i was kindda there kinndaa not there so when i woke all the way up i was like i need to talk to the doctor and the nurses kept saying well he's busy and he cant see you... I was like ok can you call the doctor and tell him that i need a blood tranfusion he said yep so the doc comes in the next morning and says to me oh you want a blood transfusion i say yes it might make me feel better! So then he said lets check your blood and see then they gave me blood and i was happy.. I was thinking about leaving Arizona cause the doctors dont know about sickle cell out here
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Permalink Reply by sandra on
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Hi! Shawnii that's great to have a sickle cell clinic where you live. What state areyou from
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Permalink Reply by stephanie eccles on
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where do u live? because I am looking for a clinic like that.
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Permalink Reply by Diana Arevalo on
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I am definitely calling the state board on the doctor that looked at me and said " you don't have sickle cell, only black people have sickle cell". I am hispanic. And that doctor doesn't deserve to have a medical license.
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OMG! See that doctor would have made me so mad. When I go to ER's that im not familiar with now I normally make sure that I start off by telling them I dont want too much medicine. One reason is because like you said, you're kinda there and you're kinda not. So in order for me to be able to handle myself and look out for myself I limit the amount of drugs they give me. I normally ask to see my blood work, because if its really high I know that 9 times out of 10, i have an infection. So I tell the doctors to treat me for the infection, give me fluids, and minimal pain medicine. I'll deal with the pain on my own, they just need to fix everything else. Its so bad when you have doctors and nurses that dont know what sickle cell is or how is it suppose to be treated. I literally stopped going to the ER unless I have to. & another thing that really bothers me is when I go i'm normally in a really really bad crisis and the doctors normally end up giving me pain meds and sending me home. I hate that! Im taking more of a stand now however, and Im being an advocate for myself. I dont allow doctors or nurses to treat me badly now. & if they do I normally let them know how ignorant they are being.
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Permalink Reply by Princess Aleah on
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I can relate to this in a way. I was recently in the hospital last week and one of the doctors came up to me and was like are you even sick. I could have choke slammed that doctor. I just gave a look like are you serious.
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Permalink Reply by Maurice Lamount Alford on
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I definately know what you're going through!! I've been told the same thing and have seen the looks and have for sure heard what they're NOT saying by the way I've been treated!! As much as I've been admitted to UCSD hospital my hematologist/sickle cell specialist joked that "they should name a wing after me because they were making millions ''on just one patient ME!! He was right I was in the hospital more than I was at home. I was in my early 20's and I clearly remember being in the hospital from the first of the month until the first of the following month and they still couldn't find the reasons that I was having more and more pain but there was a down side to all of this going back and forth to the hospital and its name is mersa or a staph infection!! After I had my first staph infection the infectious disease specialists along with hematologist/sickle cell specialist (mine) told me that the hospital can be VERY VERY DANGEROUS and should be used as a last resort !! So my hematologist started giving me a lot of stronger oral meds to use at home because he wanted me to stay out of the hospital unless it was really realy bad!! I also had a porta catheter at a young age too because I didn't have any veins left after I was 21. Well this 08-14 I'll be 41 and I understand that you don't like to take oral meds because they make you feel loopy but you should ask to be set up with a PAIN SPECIALIST! Together with you you can find the right meds for you trust me when I say this 40 trips to the hospital a year blows even ME away and I live with daily pain and I'm taking 320 mgs of Oxycontin every 8 hours and this is an extremely high dose but hopefully I'll be getting my dose lower soon.So you talk to your doctor about the PAIN SPECIALIST! I hope this helps you because they're going to keep treating you like you're drug seeking and I know that because it happend to me. Oral meds are your way out! Have a wonderful day.REESE
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Yeah I know what your taking about the porta catheter because i went to the hospital three times last week all the nurses said sweetie you veins are to bad your going to have to get a port put in but my doctor says no to the port because it can cause infection, bt it has gotten so bad that i want a port now because every time im in the er im gettin pocked atlest four or five times and one time i went to the hospital i got pocked eight times and the finally had to poke me in my neck and that was real bad. I was on a pain magement for a while i would take mophine extended reslease 15 mgs bt then i started becoming where the mophine was'nt cutting it no more i would have to take other meds on top of the two morphine i was taking SO I STOPED TAKING ANY PAIN MEDS, and that did work for a while but now im going all natural and well see what that does.
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Permalink Reply by Myra Davis on
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this happened to me last night. the doctor ran my blood work and stated everything was fine and that the pain was all in my head.
i just looked at him and asked why would i endure being poked and probed over 11 times to get an iv in just for fun (smh)
and oh no when they came in with the pain meds finally it was 4mg of morphine.
i told the nurse ive been taking morphine since i was 7 years old (im almost 27). this is not going to do anything i might as well go home and suffer
for some odd reason they act as if you have a bomb in your hand if you mention the pain med demerol sheesh.
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Girl i know they act like you wanna be poked with an iv nine or ten times like they could be doing something better. then they give you that whack morphine likes its gonna help something. I've asked for demerol and the doctor always tell me thats and old medicine and it cause seziures so we rather not give it to you but sometimes thats the only thing that works but doctor are getting real bold now days tho. I went to the hospital the other day they gave me one of dilated and the doctor came back in the room and said your sleeping like a baby how are you doing i told her that i was still in pain can i get more she said no your going home....
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Permalink Reply by lex on
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I don't often take pain meds because seeing my sister effected my taking too many pain pills scares me. She's damaged her organs and she's always sleepy. It was often times she will drive while under the influence of pain meds and she almost got into an accident. One day, she actually got into an accident. She lost a lot of weight as well. So, because I saw what washappening to her, I stayed away from it. I have to be in serious pain in order for me to take some. I'm not going to deny that it could get addictive. It's not our fault, because when we are in pain, we need it. Then any little pain you have, you want to take something. But I picked my health over pain meds. I enjoy living and I enjoy being out of the hospital.
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