I’m a nurse in a NYC public hospital and we have a cohort of patients w/SC who I see in the ED at least everyday or every other day. The hospital has a SC clinic but when it closes the patients come to the ED. They don’t have to wait and everyone knows them. So for the next 6-8hrs they are given high doses of Dilaudid/Benadryl (at least three rounds) and are released. Okay, the question – are they addicts? I mean I KNOW SC is a horrible disease and reading your blog only drives that home for me. But honestly as a nurse my compassion is waning. The patients wait at the desk 2-3hrs on the dot after the last dose saying they need the next. Seeing them on a daily recurring basis only decreases my compassion as well. I really would like to get your take.
No, they aren’t addicts. Think of the worst pain you have ever had in your life. It could be a broken limb, labor, migraine or even the shock like twinge you get once a while when you turn your head the wrong way. Okay now multiply that pain by 1000. And imagine that it’s unrelenting, constant and totally all consuming. Picture that pain not only in the affected limb but all over your body. Imagine the pain immersing every single one of your body cells, coating them like fire while a million men are drilling into your bones. You can actually feel every single cell in your body screaming in pain, you can feel with every breath the pain gets worse and worse and worse and worse.
That was just a short snapshot of what a pain crises feels like, in fact, that was just a mini-compilation in words. In actuality it’s so much worse. You’ve been on all kinds of pain meds all your life, in fact one might say you’ve built a tolerance to them. See tolerance is not the same as addiction. Addiction occurs when you crave the medication but you don’t have any pain at all, Tolerance occurs when you’ve been on pain meds for a while and your body is accustomed to the dose, so now, a dose that you consider ‘high’ is actually barely scraping a few shards off the pain.
At the most, the Benadryl zonks you out enough that you can ignore the pain, but it’s still there like a beastly monster, waiting for an hour or so just to pounce and devour you in waves of agony all over again. Your tolerance is to the level that the Dilaudid dose just helps to take the edge off, the edge that would otherwise have you screaming and rolling on the floor in hysteric misery.
Unfortunately for you, your prescription ran out, or you don’t have a high enough dose to cover the immense pain that you are feeling. The clinic is closed. You were just in the ER yesterday, but got discharged still in pain. You don’t want to go back to the hospital, but you have to, because right now at this very moment, you feel like if you don’t get some help, you are going to die. It’s a fine line between wanting to live and wanting to die, and that’s the determination that makes you go to the hospital.
The nurses and doctors remember you from the day before. The doctor tells you that you were just here yesterday and should see your primary care physician. The nurse tells you to stop messing around, she’s busy and doesn’t have time to deal with fakers or addicts. You try to carry on a brave front, but inside you are a roiling mass of despair. The pain doesn’t even let you focus, it doesn’t let you express what you really want to say. All you can do is grip your sides and pray to God for mercy.
You watch the clock, still hurting but too proud to ask for more meds. The dose the harried nurse gave you was small and didn’t do much. You smile and say thank you, gritting your teeth and sweating profusely in the effort to remain civil even though this fiendish torment is owning you, claiming you, torturing you. The hands on the clock creep slowly onward until finally you realize it’s almost time for another dose. Perhaps this time you will find relief from the anguishing waves of pain. Perhaps.
Alas, your wishes are in vain as this dose barely does anything more than the last did. You know you should ask for more pain meds, but the look the nurse gave you when she injected the so called ‘large’ dose was enough to keep you quiet. You don’t want to risk rejection and apathy from the people that are supposed to show compassion to you. So you go inward, into your happy place and become zombie like, trying to float outside of your body so that the pain doesn’t get you. The nurse thinks you are sleeping, and tells another, “she’s just drug seeking”. Those words reached you and caused your heart to break some more. Now it’s not just about the physical pain, but the emotional abuse you’ve gotten from the hands of the ‘helpful’ has just made you realize how bleak your situation is. No one understands.
Finally after the last dose, the nurse and doctor concur that you are well enough to be discharged. Your pain is still there, the underlying problems aren’t solved, in fact they weren’t even addressed. You are about to be discharged because you got the requisite three doses of Benadryl/Dilaudid and the ER ‘can’t do more to help.’ Because everyone knows that three doses is enough to fix you. It’s enough to fix sickle cell pain and let you go home. Besides, they need the bed for sicker patients. You protest, faintly at first, then louder, “But I’m still in pain! I’m still hurting!” Your pleas fall on deaf ears and icy demeanors. You are practically shoved out the door, paperwork appearing instantly, your IV taken out and the CNA unceremoniously comes to the room and tells you she needs to clean the bed.
The pain is still intense, you can barely walk—in fact, you find yourself falling as your knees buckle down. Your hands reach forward and prevent you from landing on the floor. Your joints protest as you use them, the cold hitting you and making everything a thousand times worse. You drag yourself by sheer force of will outside, forcing yourself to just keep breathing, keep living, keep fighting. Go Vixen, go! Just take another step, just crawl one more inch.
Tomorrow is another day. Perhaps tomorrow you will find some relief from this all consuming, all encompassing agony. Perhaps tomorrow someone will throw the rule book away and treat each patient on an individual basis. Perhaps tomorrow the doctor at the clinic will give you a higher dose for your oral pain meds. Perhaps tomorrow you will come across someone that actually understands, or at the very least, has some fuckin’ compassion.
But today, all you have is you. You and your pain.
IM A SICKLE PATIENT IN MICHIGAN. FIRST I WANT TO SAY READING THIS JUST I COULDN’T STOP THE TEARS FROM ROLLING AND FALLING FROM MY FACE.FOR I KNOW THE FEELING THAT YOU DESCRIBED ALL TO WELL. UNFORTUNATELY I HAVE MET WAY TO MANY OF THESE ATTITUDES THAT YOU DESCRIBED VERY WELL. I ALSO THANK THE NURSE WHO WROTE THE POST AND HOPE YOU SEE THIS.I MYSELF JUST FOUND THIS SITE. I WANT THE NURSE TO KNOW HOW I CAME ACROSS THIS SITE. I WAS FEELING A LITTLE DOWN AND DEPRESSED BUT AT THE SAME TIME HAVING THAT INNER WILL TO LIVE. SO I WAS LOOKING FOR THE OLDEST LIVING PERSON WITH SICKLE CELL BECAUSE I’M DETERMINED TO BEAT THIS DISEASE, THE ATTITUDES, THE UNFAIR TREATMENT, STEREOTYPES AND EVERYTHING THAT COMES WITH THIS HORRIBLE DISEASE. SECONDLY I WANT TO LET YOU KNOW I HAVE TRAVELED LIVED IN FIVE DIFFERENT STATES AND MEET MANY DOCTORS AND NURSES FROM NEW YORK AND THIS IS NOT AN ATTACK AGAINST YOU BUT, THEY HAVE SOME OF THE WORST ATTITUDES AND MISCONCEPTIONS ABOUT THIS DISEASE. IT’S REALLY SAD I LOVE VISITING NEW YORK BUT I KNOW THAT THAT’S ONE OF THE STATES I KNOW I WILL NEVER HAVE THE PLEASURE OF LIVING IN BECAUSE IM AFRAID DUE TO THE MEDICAL FIELD PEOPLE I HAVE MET FROM THEIR. LETS SAY YOU DID COME ACROSS A PATIENT THAT MAY HAVE BECOME ADDICTED. THIS WASN’T BECAUSE OF KNOW CHOICE OF THEIR OWN. IT WAS BECAUSE THEY WERE BORN WITH A HORRIBLE DISEASE THAT REQUIRES LARGE AMOUNTS OF PAIN MEDICINE TO TREAT. ALSO IF THEY CAME IN THEIR LAST WEEK AS WHAT YOU’RE CALLING DRUG SEEKING THEY STILL HAVE THE DISEASE AND CAN VERY WELL BE IN CRISIS. YES I SEE THIS HERE TO WHERE I LIVE WAY TOO MUCH BUT I’M PROUD TO SAY MICHIGAN ISN’T THAT BAD. MY HEART CRIES FOR SICKLERS WHO LIVE IN NEW YORK. IF YOU BECAME A NURSE TO REALLY HELP PEOPLE HOW WOULD YOU FEEL INSIDE IF YOU KNEW YOU TREATED A PATIENT BADLY NOW KNOWING HIND SIDE THAT THEY WERE HAVING THE PAIN DESCRIBED. I HOPE THIS GIVES YOU A UNDERSTANDING AND MAKE YOU AN ADVOCATE AND EDUCATOR, MAYBE EVEN POSSIBLY A BRIDGE FOR THAT PATIENT IN DESPAIR. YOU COULD TALK TO A DOCTOR AND FIGHT FOR A PATIENT AND MAKE A CHANGE IF JUST FOR ONE NIGHT. YOU WOULD MAKE A DIFFERENCE IN THAT PATIENT LIFE AND THEY WILL NEVER FORGET YOU. THAT IS WHAT YOU BECAME A NURSE FOR RIGHT TO SERVE, HELP, MAKE A DIFFERENCE IN SOME ONE LIFE AT ONE OF THEIR HARDEST MOMENTS. IF NOT MAYBE YOU’RE IN THE WRONG FIELD YOU SEE IF YOU CAN’T HELP DON’T HURT. HOWEVER THANKS FOR BEING HONEST AND AT LEAST SEEKING SOME UNDERSTANDING AND TRUTH. PLEASE I PRAY THIS REACH YOUR EYES AND HEART. GOD HAD HIS WAY TODAY BECAUSE THIS INSPIRED ME AND TOUCHED MY HEART I KNOW NOW FOR SURE IT’S NOT JUST ME THAT TRULY FEEL THAT WAY INSIDE. YOU SEE I WANT EVEN SIT DOWN AND TALK TO ANYONE BECAUSE OF THE ATTITUDES OF PEOPLE WITH THE DISEASE ALTHOUGH I WANT TO NEED TO. SO UNDERSTAND THE DAMAGE YOU HAVE THE POWER OF DOING TO ONE OF GODS CHILDREN. MAY GOD BLESS YOU AND YOUR HEART, PATIENTS. PLEASE MAKE A DIFFERENCE.
I feel you big time “S” the attitudes are unbelievable If any of the nurses that have an issue with sickle cell had this disease they wouldn’t be talking mad shit…my thing is why choose the health field if you don’t have compassion for others? Any position in the health field should be a calling not just a job…So to the nurse that is loosing compassion for her patients with SCD you need to find another job like asap because you will always have SCD patients and the pain isn’t going to stop…
What kills me is people who don’t have Sickle Cell are the ones who can just sit back and easily judge people who do have Sickle Cell. Like I told a nurse one day ” Yeah I Look Good From The Outside But How Do You Know What I Look Like Or How I Feel On The Inside”. I got so sick in my earlier days of my life when I was much younger than I am now. I told my mother that I wish everyone in the world could go through the pain that I’m feeling right now and she turned to me and replied back “No You Don’t. I have never wished to be born with this disease and never in my life knew that I would ever be in as much pain that I could ever take or handle in my life time. If a person could be born and pick their own health condition and you can sit down and read what kind of pain you would have to go through, I bet you no one in the world would pick this terrible disease. If I had a known back then about people working in the work place and nurses working in the ER like I know now I think my life would be a lot better because the way that some people talk to you like as if you are nothing and a nobody. I know now some nurses and some doctors won’t even try to help you because they thinking in their little head that you only want meds to get high with instead of getting it to stop the pain. I only wish that some of these hospitals around the world would take the time and love on the patients no matter what they are there for. If you only see how much attention a person gets when they come to the hospital and the patient has Cancer, they get the most attention and nurses and doctors know they are going through some form of pain but they don’t get treated like us Sickle Cell Patients at all. How do I know because at Wake Forest Hospital at the Cancer Center they have a building just for people with Cancer and Sickle Cell. If you only would sit back and look at the nurses and watch how they treat the patients no matter what they have and no matter what the pain level is we all should get treated the same way, but this is America and certain states are not the same either. I would be glad when some of these hospitals train their Nurses on how to do a more Professional Job instead of being there just for the hours and money and go home and not giving a darn about the Love and Care of the job they are there to do. Stop judging folks and just do your job. God is the only one that will put us all through judgement day once we all die and be able to make it to heaven.
The thing that’s missing and I feel is most important that the medical community realizes is that every crises could be our last. I was told by a nurse tbat they had more compassion for cancer patients because they could die. Newsflash…so can we! The biggest difference being we have dealt with this our entire lives, we have it of no fault of our own, and there is no medicine that can cure us. No one wants to be in a hospital. We distract ourselves from thinking of the pain by talking on the phone, watching tv, mefitating, play a game on the phone/tablet, etc, and are judged as being okay because we were able to do these things. When you’ve dealt with pain your entire life you have to develop techniques to relieve it other than meds or you would not be able to live. Sleeping all day everyday is not an option. If you are truly in it to help others, listen to them. You will NEVER meet a warrior that doesn’t know there body and what works. The pain starts long before it shows in our labs. Levels higher than normal can cause pain too. Stop judging situations you fully understand and remember compassion is free!
As a mother I have watched for 29years my child in pain and being treated like a addict from medical professionals, family members, and other people who are to ignorant to read and understand the natural of the disease. My daughter once said as a child that the children with cancer are treated better than she. When she is not in excruciating pain she doesn’t take her pain meds until the pain gets to the point she feels like she is being stabbed in her bones, over and over. I have been a Nurse for over 30years and have worked in OR, Er and Charge and staff. Er usually will allow you to wait sometime1-3 hours in pain. I have told my child to tell them you have chest pains which lately she has to get attention. Medical staff needs to be educated in med school before internships. The comes from a lack of education on the Medical Schools. I am not angry but fed up for the lack of compassion. What if it was your child.
Shawn. I tends to concur with you. My doctor once sincerely told me it’s because this health challenge is predominantly an African and it’s decendants challenge that the world has not so much taken it up as a matter of urgency to find a cure.
To the shitty treatment meeted out to warriors when we visit the er, I would just say i don’t blame them, they don’t know the feelings and can’t feel the pains since it’s not them who are feeling it, so why can’t they afford to treat us shabilly? Shit happens in life and i can never wish the pains of SCD on anyone but if only they know. If only they know. Smh. It’s crazy really.
I couldn’t stop the tears from falling as I read your response. I don’t have Sickle Cell but my baby sister did. We lost her in 2004. She was 36. I spent many days and nights in hospital with her. We eventually found a doctor that wasn’t worried about ‘addiction’ because of the levels of pain she dealt with but the insurance company tried to make a big deal out of it. I remember before him though, cussing out nurses because my sissy was crying and they needed to call the doctor and get her pain meds increased. And I would do this until she was able to sleep. But I remember her crying and screaming in pain when she would be in crisis. The information is there. Doctors should know what the current treatments and techniques are. There is absolutely no reason anyone should be dealing with uncontrolled pain.
Good job Tosin! I’d also like to add, that it is clear to me that Healthcare providers don’t really understand the complexity of Sickle Cell. Just because
one isn’t in a “crisis”, doesn’t mean one is not having pain. I have Sickle cell and for the past year or so I have had pain every day, varying from low grade to medium. It’s still bothersome pain and over the counter medicine does nothing to relieve it. So what about people like me? Are we perpetual fakers because we claim to have pain every day? Recent studies done even say that sicklers are still sickling even when they are not in crises, meaning their cells are constantly breaking down and they’re still getting vascular blockage. I’m tires of the traditional notion that sicklers only have one type of pain and that is a crises, and that’s it. It’s time we recognize that we all have different kinds of pains, and we all perhaps even characterize a “crises” differently. The low grade pain I get everyday is enough to keep me bed ridden & stop me from doing daily activities, yet I wouldn’t necessarily categorize it as a crises. Food for thought, something to think about.
This is the main reason why I don’t go to the hospital!!! I guess you can say,” I must love the pain” I have been through these same situations!!It spoke my life. And hope It broke it down for them!! If you know that I go through all of this why won’t you help me??? Stop looking at me see my pain!
For 62 years I have Soildered through with a so called ” lesser degree” of SC. Most recently my primary care physician sent me to the ER and after the long painful wait my name was called and I was moved to an exam room only to be met eventually by a physician who said to me ” I don’t know why your doctor thought your complaint was worthy of your coming to the ER for further testing I’m NOT DOING IT”. Well you can imagine my complete and utter shock to hear this as I’m in major pain. We as SC Warriors I say go through this description on the constant which probably would take the average individual OUT!! Our bodies feel as if the whole body or joints have been placed in a vice and tightened up as tight as it can be and just when you think it can’t possibly become any worse……it does!! We ate kind and hospitable through it ALL when others are playing the why me song we say why NOT us, because we wouldn’t put this on anyone else and we know the Lord has chosen us to carry this torch as we have incredible strength, dignity,endurance and grace to make our way through. Keep on pressing your way fellow Warriors and Warrior parents and families……..Linda
I’m a patient who was hospitalized 4 times last year a total of 4 months to be exact. Last year was one of the worst moments being hospitalized back to back in excruciating pain and having to be away from my 2 little boys and husband. My last one in December, I was treated horrible by the hospitalist who was treating me and according to her she was also communicating with my hematologist, come to find out she was not. She had a Pyschology Doctor come to evaluate me because she didn’t believe I was in so much pain and because I required a pretty high dose to help control my pain!!! The Pyschology Doctor was so shocked by her allegations and apologized to me for having to go through that kind of treatment. The admitting night Doctor looked at my records and saw my past orders so she ordered Dilaudid every 4 hours and Benadryl every 6 hours for itching which I always get and never had any issues in prior hospitalizations. However this Doctor just made up her mind before even speaking to me and thought I was faking my pain to get high doses of pain meds. I’ve never had any issues in the past and almost all of the hospital staff knows me and knows that I only go to the hospital when the pain is unbearable and I just can’t manage at home anymore. So it was a huge shock when this Doctor came into my room without even asking how I was feeling and telling me that I’m getting too much pain meds and because of “new hospital policy” they don’t give high doses of Dilaudid and iv benadryl anymore and the oral dose works just the same. I was already in so much pain that I couldn’t talk let alone open my eyes but I was just in complete shock that she was – 1) accusing me of being addicted and not in real pain and 2) lying to me about this so called new hospital policy and not communicating with my hem Doctor. I’m sorry, but if you’ve never experienced true pain don’t stand there and accuse someone who is well respected by all of the hospital Doctors and nurses and only goes to the hospital when needed. Another thing please don’t accuse us of being addicted to Benadryl as well. You would never understand that annoying burning itchy feeling throughout your entire body that you get from the pain medication as well as horrible migraines. It’s like we can never catch a break. To the nurse who wrote this post I hope you read these comments so you can get a better understanding of why we require Dilaudid and Benadryl, believe me it’s not by choice and unfortunately your concerns and judgement doesn’t help us feel any better. We come to the hospital not by choice but because we have to. No one wants to lay in a hospital bed sharing a room, in most cases, with a complete stranger having to get poked a hundred times running test after test for days on end and only to be treated like our disease and pain is not real. What I would suggest is don’t treat everyone the same because we all have different stories and read up about the disease and educate yourself so you can get an idea and better understanding of what we go through.
To all my warriors – keep your head up and don’t give up. If we all continue to speak up and tell our stories we can definitely make a huge change and hopefully one day get equal treatment in the hospitals that we all deserve and completely erase this stigma on Sickle cell.
I have a very low tolerance for physicians and ignorant nurses. Her post let’s me know she’s in the wrong profession. Do us all a favor and educate yourself on SC or quit.
Some people say, “Sickle Cell Sucks!”
Yes it does, and we have to let others know! Most people just don’t get it! They have to be a Sickle Cell Expert to really understand “The Sickle Cell Experience!”
Others slowly or quickly kill those diagnosed because they won’t find out from the Experts rather post their opinions and get opinions!
Sickle Cell Community Members?
Did you contact your Senators & Congress Reps yet?
We will be in DC the 23-26 letting them know just that at:
Congressional Briefing on Chronic Pain, Wednesday, April 25, 2018
12:00pm – 2:00pm,
Room 122, Cannon HOB
US Capitol, Washington, DC
TELL YOUR TWO U.S. SENATORS (www.Senate.gov, 202-224-3121) AND U.S. CONGRESSPERSONS (www.House.gov, 202-224-3121), THROUGH THEIR HEALTH ISSUES STAFF REPRESENTATIVES, TO SUPPORT AND PARTICIPATE IN OUR CONGRESSIONAL BRIEFING ON CHRONIC PAIN, WEDNESDAY, APRIL 25, 2018,
12:00pm – 2:00pm,
Room 122, Cannon HOB
THE U.S. CAPITOL, DURING PAIN PATIENTS ADVOCACY WEEK!
While your at it, ask your Senators to Co-Sponsor SB2465, the Sickle Cell Treatment Act!
http://www.PainPatientsCoalition.com/2018Schedule.html
Nita Thompson
Coalition for Humane Treatment of Sickle Cell-
Cfhtosc@gmail.com
http://www.juneteenth.us/sicklecell.html
World Sickle Cell Federation-
WSCFederation@gmail.com
http://www.WorldSickleCellFederation.com
That reminds me of last year when I broke my hand punching my sister’s door (who is a physician and treats me like a damn addict and usually asks me about how to deal with SC patients where she works – this is how much she ignores my disease). I only noticed my hand broke because it got very deformed. I took some time to think about how little it hurts to break a bone. If I could, I would immediately trade SCD with breaking a bone daily.
Also, this year my sister got viral gastroenteritis and passed out twice because of the stomach pain. And my mom always likes to make a point of how resilient to pain my sister is (because I’m always complaining about pain). Two weeks later I got the same virus. Again, hell of a pain, but I wish I could trade my almost daily SCD pain for this…
Also, for the people who believe the ER routine sucks enough for black people, I’m here to tell you it actually gets worse than that. I am white, blonde, and with blue eyes so, over the bias on the disease due to most of my warrior brothers and sisters in the world who have SCD having black skin, I get an extra discredit because I don’t match the usual biotype of almost all of you. Plus, I have some tattoos, which causes even more prejudice. My dream is that one day they come up with a machine that measures the pain scale of a patient so we, brothers and sisters, could top the meters of those machines every time they try to figure our pain, so we can show people in the ER and some friends and family members how much they are wrong about us.
When having to deal with pain almost daily, you just stop acting like you are in pain and, because of this, they think we are ok. I usually keep my good sense of humour even under heavy pain, but in front of a doctor, I’ll cry because if I act normal or laugh over something, they assume I’m not in pain.