VENT - Sickle Cell Crisis patients

[abbaking]

This is a well needed vent. This is not to be taken out of context. I am simply trying to make a point. Although Sickle Cell Crisis (SCC) patients are mostly black, this is NOT a racial issue.

Here goes.

In my years working the bedside, I have cared for many a number of SCC patients. In those years I have noticed a common theme or behavioral profile so to speak of these patients. Most of these patients have had repeated hospitalizations from early childhood and become "institutionalized" in some ways when it comes time for re-admission to the facility. What is irritating to me as a professional, is the constant use and misuse of our medical facilities. I understand the remifications of this dreaded disease; However, if a patient so well versed in healthcare like SCC patients (and so many are), why the disregard and lack of involvement in there care?

Of the numerous SCC patients I have cared for in my career, I can only think of 2 that have participated actively in there care. Most of these patients are ordered O2 - Invariably when i do my rounds they have it off or simply refuse to wear the cannula. Many of these patients order vast amounts of food from dietary services, and yet, barely touch any of it - what a waste of food and hospital monies.

Perhaps the most pressing issue is Pain Management. Almost always, the pain level from these patients is 10/10. I am not doubting the existance of their pain, but after seeing first hand palliative care cancer patients in AGONY, I must say that i am skeptical that SCC patients' pain level is 10/10 all the time- everytime.

Maybe I am narrow minded and a bit to harsh on these poor individuals, But from what I have seen in my years working the bedside with SCC patients, MOST of the time - there seems to be a bit of manipulation and a power-play. Sadly, I think it is the patient with SCC who takes the chance and will lose.

This was a vent and Like I said in the begining, This is not a racial issue. I needed to vent this. Please dont come to the conclusion that I am oversteping my boundries or making unrealistic statements.

[BluegrassRN]

These are such difficult pts to work with, simply because of the nature of their disease. The cycling of chronic vs acute pain, the shortened lifespan, the financial difficulties that accompany a chronic, debilitating disease; it's so hard.

I do think a lot of chronically ill pts "use" the system. I also think a lot of them simply "know" the system. Like another pp, I work with about 4 scc pts routine. I know their food likes and dislikes, which pain meds work best in what combo, etc. When they present, they know what they need. It's not so much that I feel manipulated...it's that they simply know, through years of experience, what works. Most seem to be somewhat of control freaks, in part because there is so much they don't have control over. When control freaks (the chronically ill) meet control freaks (we medical professionals), sometimes it's great meeting of minds, and sometimes it's an ugly butting of heads.

Mostly I find these patients difficult to work with because of the difficult nature of their disease. Honestly, these people could do *everything* right, be scary-compliant with all recommendations, and STILL suffer extreme, exquisite pain. You want to be able to help them, but sometimes no matter what, it doesn't work. I would be frustrated if I were them, too.

I just want to remind us all, too, that the frequent flyers you see are the ones who, for whatever reason have great difficulty managing their disease. You don't see all the ones who are able to manage their disease well, and rarely if ever present for care. Recently I took care of a SCC pt, age 37, who had not EVER been hospitalized for her disease before. When I admitted her, I assumed she had just moved to the area, since I didn't know her from previous admissions. Imagine my surprise when she told me she had grown up here, she just had never before had a crisis so bad it required admission. When I said something about it being unusual, she just sort of put me in my place, saying "You think everyone with sickle cell is hospitalized all the time? Really? There are hundreds of us in this city, and I'll bet you hardly see any of us." She told me she has three siblings with sickle cell, and only one of them has been hospitalized more than once for it. She was right to scold me like that, I totally deserved it.

[AngelfireRN, MSN, RN, APRN]

As a fellow migraine sufferer, I can say as well that the pain is something you learn to deal with. I have had these boogers since I was 17, and waited 11 years before my cardiologist got me in to see his wife, a neuro. Imitrez IM never touched me, MS04 and Demerol just made me feel weird, they didn't really help. I used to pass out from the pain, combined with teh weakness from the nausea and anorexia that came with. Yes, my pain was a 10/10, and still is some days, but unless I can catch them at the start with my meds, I know I'm in for 3 days of it, and I can not take sick days every time.

I know it is so supremely frustrating to have to endure the constant carping of someone whose appearance does not match what they are saying. No one sees how I can work with the headaches. Thing is, I can handle pain. The nausea gets me, but the pain I can deal with. I just do my best to not puke on the other docs.

I know how I must have looked when I was younger, saying that I was still hurting, but I was in so much pain, it was unreal. Trouble was, you could not see it. My DH still gets on a kick of calling me lazy when I get a bad one, beacuse if I can, I stay in bed.

It's a pain in the butt, to be sure, I know. I'm a pain in my OWN butt, so I try to make sure I am the only one who has to deal with me, and my poor doc if it's bad to the point I have to have a shot. They really only knock me out for 12 hours, the pain is still there, but at least I can sleep.

Good luck to you, hon. I know I ramble. I'm not judging you. I know how you feel, and there nothing for it. It'll be that way until the end of days, because of the old almighty Press-Ganey. Hang in there. If you need to vent, PM me. Nothing but a sympathetic ear here, from a fellow problem-causer.

[~Mi Vida Loca~RN, ASN, RN]

I saw my first SCC patient. He wasn't my patient but he was next door when I had to go to the Oncology Unit with my patient. As students we are encouraged to look up charts on floors we are on to learn how to get around in them, get the big picture and so on, so we get encouraged to be nosey, as long as it's where we are at. Anyway, I saw this young man getting transported, he looked maybe 19-20, in fetal position in an obvious amount of excruciating pain, I got a glance of his face and he had tears rolling down. I mean if the man was faking, he deserved an oscar! I checked his chart to see what was going on and saw he was admitted for SCC (I wasn't sure why he was admitted onto the oncology floor, is this common?), I heard him screaming, not like dramatic screaming, but like when your kid does that scream and you know they REALLY are hurt and aren't just "upset" anyone that has worked around children knows what I am talking about. Anyway, when they were in getting labs he was screaming out in pain. According to his chart he comes in with SCC about 3-4 times a year, seems to happen every few months. I felt so bad for this man. I later overheard him being talked about negatively which was upsetting. I know what Sickle Cell Anemia is but don't know anything about the acute attacks. What usually triggers it? I know dehydration can right? Anyway, that was the first time I have even heard of SCC and this was the second so I am just curious.

Sorry about your frustrations OP. I was under the impression this was a disease that effected African Americans as well so I didn't find your post leading to any racism. We all get frustrated and need to get it out sometimes. :) It's actually facinating to me why SCA started.

As far as pain, I suffer from Chronic back pain and inflammation. You do learn to cope with a lot of pain, I know I do. I hate having to be seen about it to because I feel like I am being judged. It has been under control pretty well for the past month with Motrin 800 3 times a day for the inflammation, (my whole sacral area gets extremely inflamed and is very painful) then I get sharp pains mid back. I have bone spurs and start of some super long word that for the life of me i can't remember right now LOL. The past few days the inflammation and pain has been back pretty bad. Most people though probably wouldn't even be able to tell from looking at me that I am in pain though, it's simply something you learn to cope with and it has to get really freaking bad.

So many people say that childbirth is the most painful thing to go through and labor, while it's not fun and it is painful. I have had 4 kids, It is not anywhere close to the worst pain I have ever been through.

[Virgo_RN, BSN, RN]

I've never had an SCC patient, but I have cared for several people with chronic disease beginning in childhood, such as Type 1 Diabetes. In my experience caring for adults who have been living with chronic disease since childhood, it appears as though they tend to adopt the "sick role" more so than adults experiencing an acute health crisis or even an exacerbation of a chronic health problem with adult onset.

Once I know an adult patient has a congenital heart defect, DM since the age of 10, an autoimmune disorder since the age of 7, etc., I know how our interactions are going to be. I try really hard not to have preconceived notions, but my experience has borne this out.

One poster mentioned "learned helplessness". This is absolutely a factor. Imagine being 30 and relying on doctors and nurses for everything from a warm blanket to pain medication since you were 5. People adopt the role they are put in. Just google "Stanford Prison Experiment" for a brilliant example of this.

Tonight I gave a patient 100mcg of Fentanyl, 3mg of Dilaudid IV, and 2mg of Dilaudid PO within a 2 hour time span, for a simple headache. Not a migraine, but a simple headache. And the meds didn't even touch the pain. His sats were in the high 90s on RA, RR 16, even and unlabored, and yet he wanted O2. I gave him 2LPM by NC for comfort, and he wanted a simple mask because he didn't like the nasal prongs (I suggested he put the prongs in his mouth). When he had received his first liter of NS and I saline locked him, he wanted more IVF, for no specific reason. When asked if he needed another warm blanket, he said his bottom half was too cold and his top half too hot, and he thought he just needed to "break the fever"; he was afebrile. Every little odd sensation was worthy of reporting to me, as if I could do anything about it. He was nice, but a lot of work, and most of it, IMO, was psychosocial, related to the "sick role". It was as if he wanted pillow fluffing and hand-holding, but had to think of reasons to get my attention. I don't doubt for a moment that he had a bad headache, and I worked really hard to make a dent and feel badly that I was unable to, and he even thanked me for my care when I sent him to the floor. Yet, a part of me was relieved to see him go, because he was so high maintenance, and a lot of it was psych.

I feel like I'm rambling now, but I think I understand how you feel. It's not that you lack any compassion for these folks, and it's not that you don't do your best to care for them. But, they are draining in their own particular way.

[morte, LPN, LVN]

not all SC patients are "Black" though i would think most if not all are African (descent).....

[AngelfireRN, MSN, RN, APRN]

Mi Vida, is it ankylosing spondylitis? I hope I spelled that one right.

[~Mi Vida Loca~RN, ASN, RN]

Mi Vida, is it ankylosing spondylitis? I hope I spelled that one right.

No it was something like moderate vertebral subluxation?? It was 2 years ago when I went to a chiropractor who did X rays and said I had something like that and the start of bone spurs. Then also my neck is straight and not curved. My back issues started when I was 15 caused by a combination of things, I have a large chest, many back labors, a car accident where I rolled 2.5 times and my last pregnancy my uterus was prolapsed so my daughter sat very low in my pelvis the whole time. You couldn't even tell I was pregnant. It was very painful. It was after that the inflammation portion started, they did a thermal scan and showed many areas of inflammation even after I was treated at the chiropractor a lot for 6 months. I couldn't afford to keep going and ins. doesn't cover it.

Every Dr and NP I have seen has done nothing about it. I don't think they take it seriously. I often get the idea they think I am a drug seeker when that isn't the case. I do have a high tolerance to meds, I can take 3 vicodin and it won't even touch the pain. Right now they changed me to 1-2 10mg norco every 4-6 prn and 2 of those helps but BARELY take the edge off the pain. My one bottle of 45 I have had for 2 months so I hardly think I am a drug seeker.

Anyway, never once at the Dr's have they ever thought to investigate, so I don't have a medical diagnosis just "hx of chronic back pain", just what I was told at the Chiropractor and what I saw on my films and thermal scan.

[Spiderella]

A couple of nurses have already approached this from the nursing point of view, so I'm going to try a different angle. As a nurse with sickle cell anemia, I have the unique position of understanding the realities of both scenarios.

Sickle cell primarily affects those of African descent, Hispanics of Caribbean ancestry and is found in those with Middle Eastern, Indian, Latin American, Native American and Mediterranean heritage. Most of the Sickle cell patients in America are black, but I have met those with other ethnicities as well.

Think of the worst pain you have ever had in your life...perhaps childbirth, or when you broke something. Now multiply that pain by 100. Imagine someone pouring hot lava into your veins. How does that feel like? Imagine yourself being set on fire....how does that feel like? Imagine 1,000 men drilling holes into your bones. Imagine all these things going on at once, and you are cold, while an elephant is sitting on your chest. Okay...keep that image in your mind as you read the rest.

I detest going to the emergency room or getting admitted to the hospital for my disease. I will manage it at home as much as I can, but if I need to go to the hospital, it is because the pain is uncontrollable, and nothing in my orificenal works. I do go to my doctor's visits, and have a healthy grasp of my disease process, but I still have to go to the emergency room when in an acute pain crises. Most of the time, even if I go to my doctor's office, it is just a waste of time, because he will tell me to go to the ER.

So coming to the ER because one has a chronic condition is not a misuse of the medical facility. If a diabetic came in with a blood sugar of 45 or 545, would he be misusing the ER? After all, he understands his disease process and diabetes is a chronic condition, is it not? In my esteem, SCD patient coming to the ER with an acute flare-up of a chronic condition should get the same compassionate care as a diabetic coming to the ER with an out of wack blood sugar.

Cold is not good for sickle cell, it exacerbates the painful feeling. And ERs and hospitals are kept very, very cold.

Regarding using Oxygen...even I take off the nasal cannula after a few minutes. It's blowing cold dry air, into a body that is craving heat. I'm trying to stay huddled under this one warm blanket and get warm, but cold air is being pushed into my nose. I prefer a face mask, and have asked for one several times only to be told by the ER nurse that it requires an order from the physician, and I don't need it. And as much as I know that oxygen is good for me in a crises, it really does feel like a huge slimy booger at the tip of my nose. It drives me to distraction, and there is already too much on my plate, and so, I take it off.

I know what works for me because I have been dealing with this condition for 29 years. So knowing what medications, the doses, the regimen, this is all natural, because I have been doing this pretty much all my life. I know that Morphine depresses my breathing and doesn't touch my pain, I know that Dilaudid helps a little but will make me itch like crazy, I know that Fentanyl works only for 5 minutes, I know that Demerol turns me into a delirious, blathering fool and will make me throw up. Therefore, asking for specific medication and doses given in a specific manner, should not be a bad thing, because the patient has a history that only he is aware of. You might have access to his chart from the previous hospitalization, but do you have access to his chart for every admission or ER visit that he has had all his life? It's better to collaborate with the patient and come up with a plan together, this way, you don't have to wade through the whole 'trial and error' process that does not work and just leaves your patient waiting in more pain.

By the time I get moved to the inner sanctum of the ER, and get IV line is established (I'm a very, very hard stick), I have already been in excruciating pain for no less than 2-3 hours. With no relief, the pain keeps building and building until even the paltry first 2-3 doses of pain meds will not do anything to stem the tide. So you getting frustrated after giving me 2 doses, and my pain is still a 10, well this is partly because the pain has been raging uncontrollably for so long that small doses of IV anything isn't going to touch it.

Regarding food: it's a comfort thing. When you are sick, and someone brings you your favorite drink or snack, doesn't that comfort you on some small level? So therefore, me asking for Lorna Doones (my favorite cookies), or peanut butter toast and hot chocolate is not to be rude or to turn you into my personal waitress, it's because, food brings a level of comfort into a painful existence. And not eating the food when it is brought, it is not to waste food, it is because probably right then, I am in more pain, and can't really focus on anything but the pain at that point. Or I'm nauseated. Or...hospital food tastes like crap.

Regarding your point about pain scale, right now, my pain level is a 3. When I have a mini-crises, it's a 5. When I have a major crises it's a 8. When I have pain so bad that it's all encompassing, all over my body in a tidal wave of excruciating fire...that's a 10. And the 2mg of Dilaudid shot you gave me 15 minutes ago barely took it down to a breathable 9.5. My pain score is high not because I'm a drug addict or want pain meds, it's because I'm in an acute pain crises, and at that moment, the pain is really, really, really bad. But the other nurses are right, pain is very subjective. So if the patient states their pain is a 10, treat it like it's a 10. Why does it bother you so? Are you paying for the medication or their medical bills?

A person with chronic pain might not have the same posturing that you expect with a 10/10 pain. With my 10/10 pain, I can't do anything, I don't even want to talk, I just want to cry, curl into a fetal position and pray for a quick, merciful death. However, my sister at a 10, watches TV to distract herself and keep her mind off the pain. At a 9 she can even talk on the phone. And when my parents or family call me on the phone, at a 9/10, I talk and act as 'normal' as possible because I don't want them to be worried. How one deals with pain is should not be the yardstick for the pain scale or your decision to administer or with-hold meds.

Regarding the power play issue you mentioned, there is a huge power-play between the patient and the nurse. The nurse feels like she knows everything and can pretty much decide how miserable she will let her patient be, while the SCD patient who has been dealing with this condition all her life is thrust in the role of the supplicant, begging for water, help to get to the bathroom, pain meds etc..

You also have to bear in mind that many SCD patients have had negative and bad experiences with medical professionals pretty much all their lives. Having experienced painful crises and several hospitalizations, I can tell firsthand the negative attitude that health-care practitioners exhibit towards sickle cell patients. It is common for SCD patients to be labeled as malingerers, manipulators, or even defined as drug seekers by nurses and physicians. So the patient is coming to you with BAGGAGE from all these previous hospitalizations. And you have BAGGAGE from all the hordes of frequent flyers you have taken care of. It's like a toxic relationship, no trust, but tons of baggage on both sides.

SCD patients frequently report dissatisfaction with care they receive, which is often related to inadequate pain relief (Dorsey & Murdaugh, p. 45). Inadequate pain relief results in a poor quality of life, passivity and aggressiveness when dealing with care providers and heightened distrust between SCD patients and their providers (Strickland et al., p. 37).

I have had a nurse tell me, "Don't expect all your pain to go away." I have been discharged in pain and had to crawl through the ER to the waiting room on my hands and knees, while nurses looked on. I have had to wait for hours for someone to help me to the bathroom, and it was the woman who came to mop the floor of my room, that walked me to the bathroom. I have had a doctor tell me "shut up, you don't know anything." I have had a nurse say to me, "Why are you crying, you should be used to this by now." These are just my stories...and I am a nurse myself, and have been exclusively only to the ERs of the Hospitals where I have worked in. So I imagine that your patients are coming to you with the same history---or worse.

So I come to you, with all this baggage, in pain, and I'm asking you to help me.

What you do, well....that's all on you, but realize that as a nurse, you are supposed to help people...and not harm them.

[trixie333, ASN]

Spiderella,,,,thanks....excellent report (and confession).....what a cross you bear in this life....you are very brave to spell it out....I am sorry for all the healthcare providers who were mean and cruel to you....very immature, rude, and unprofessional, and I cringe when I witness it...but it's tough to speak up as it almost always invites lateral violence and bullying...my coping skills there are not the most effective....but I do try to help, not hurt....and fly under the radar, so to speak....I wish for you to be pain-free the rest of your life...and thanks for being a nurse....

[chaxanmom]

A couple of nurses have already approached this from the nursing point of view, so I'm going to try a different angle. As a nurse with sickle cell anemia, I have the unique position of understanding the realities of both scenarios.

Sickle cell primarily affects those of African descent, Hispanics of Caribbean ancestry and is found in those with Middle Eastern, Indian, Latin American, Native American and Mediterranean heritage. Most of the Sickle cell patients in America are black, but I have met those with other ethnicities as well.

Think of the worst pain you have ever had in your life...perhaps childbirth, or when you broke something. Now multiply that pain by 100. Imagine someone pouring hot lava into your veins. How does that feel like? Imagine yourself being set on fire....how does that feel like? Imagine 1,000 men drilling holes into your bones. Imagine all these things going on at once, and you are cold, while an elephant is sitting on your chest. Okay...keep that image in your mind as you read the rest.

I detest going to the emergency room or getting admitted to the hospital for my disease. I will manage it at home as much as I can, but if I need to go to the hospital, it is because the pain is uncontrollable, and nothing in my orificenal works. I do go to my doctor's visits, and have a healthy grasp of my disease process, but I still have to go to the emergency room when in an acute pain crises. Most of the time, even if I go to my doctor's office, it is just a waste of time, because he will tell me to go to the ER.

So coming to the ER because one has a chronic condition is not a misuse of the medical facility. If a diabetic came in with a blood sugar of 45 or 545, would he be misusing the ER? After all, he understands his disease process and diabetes is a chronic condition, is it not? In my esteem, SCD patient coming to the ER with an acute flare-up of a chronic condition should get the same compassionate care as a diabetic coming to the ER with an out of wack blood sugar.

Cold is not good for sickle cell, it exacerbates the painful feeling. And ERs and hospitals are kept very, very cold.

Regarding using Oxygen...even I take off the nasal cannula after a few minutes. It's blowing cold dry air, into a body that is craving heat. I'm trying to stay huddled under this one warm blanket and get warm, but cold air is being pushed into my nose. I prefer a face mask, and have asked for one several times only to be told by the ER nurse that it requires an order from the physician, and I don't need it. And as much as I know that oxygen is good for me in a crises, it really does feel like a huge slimy booger at the tip of my nose. It drives me to distraction, and there is already too much on my plate, and so, I take it off.

I know what works for me because I have been dealing with this condition for 29 years. So knowing what medications, the doses, the regimen, this is all natural, because I have been doing this pretty much all my life. I know that Morphine depresses my breathing and doesn't touch my pain, I know that Dilaudid helps a little but will make me itch like crazy, I know that Fentanyl works only for 5 minutes, I know that Demerol turns me into a delirious, blathering fool and will make me throw up. Therefore, asking for specific medication and doses given in a specific manner, should not be a bad thing, because the patient has a history that only he is aware of. You might have access to his chart from the previous hospitalization, but do you have access to his chart for every admission or ER visit that he has had all his life? It's better to collaborate with the patient and come up with a plan together, this way, you don't have to wade through the whole 'trial and error' process that does not work and just leaves your patient waiting in more pain.

By the time I get moved to the inner sanctum of the ER, and get IV line is established (I'm a very, very hard stick), I have already been in excruciating pain for no less than 2-3 hours. With no relief, the pain keeps building and building until even the paltry first 2-3 doses of pain meds will not do anything to stem the tide. So you getting frustrated after giving me 2 doses, and my pain is still a 10, well this is partly because the pain has been raging uncontrollably for so long that small doses of IV anything isn't going to touch it.

Regarding food: it's a comfort thing. When you are sick, and someone brings you your favorite drink or snack, doesn't that comfort you on some small level? So therefore, me asking for Lorna Doones (my favorite cookies), or peanut butter toast and hot chocolate is not to be rude or to turn you into my personal waitress, it's because, food brings a level of comfort into a painful existence. And not eating the food when it is brought, it is not to waste food, it is because probably right then, I am in more pain, and can't really focus on anything but the pain at that point. Or I'm nauseated. Or...hospital food tastes like crap.

Regarding your point about pain scale, right now, my pain level is a 3. When I have a mini-crises, it's a 5. When I have a major crises it's a 8. When I have pain so bad that it's all encompassing, all over my body in a tidal wave of excruciating fire...that's a 10. And the 2mg of Dilaudid shot you gave me 15 minutes ago barely took it down to a breathable 9.5. My pain score is high not because I'm a drug addict or want pain meds, it's because I'm in an acute pain crises, and at that moment, the pain is really, really, really bad. But the other nurses are right, pain is very subjective. So if the patient states their pain is a 10, treat it like it's a 10. Why does it bother you so? Are you paying for the medication or their medical bills?

A person with chronic pain might not have the same posturing that you expect with a 10/10 pain. With my 10/10 pain, I can't do anything, I don't even want to talk, I just want to cry, curl into a fetal position and pray for a quick, merciful death. However, my sister at a 10, watches TV to distract herself and keep her mind off the pain. At a 9 she can even talk on the phone. And when my parents or family call me on the phone, at a 9/10, I talk and act as 'normal' as possible because I don't want them to be worried. How one deals with pain is should not be the yardstick for the pain scale or your decision to administer or with-hold meds.

Regarding the power play issue you mentioned, there is a huge power-play between the patient and the nurse. The nurse feels like she knows everything and can pretty much decide how miserable she will let her patient be, while the SCD patient who has been dealing with this condition all her life is thrust in the role of the supplicant, begging for water, help to get to the bathroom, pain meds etc..

You also have to bear in mind that many SCD patients have had negative and bad experiences with medical professionals pretty much all their lives. Having experienced painful crises and several hospitalizations, I can tell firsthand the negative attitude that health-care practitioners exhibit towards sickle cell patients. It is common for SCD patients to be labeled as malingerers, manipulators, or even defined as drug seekers by nurses and physicians. So the patient is coming to you with BAGGAGE from all these previous hospitalizations. And you have BAGGAGE from all the hordes of frequent flyers you have taken care of. It's like a toxic relationship, no trust, but tons of baggage on both sides.

SCD patients frequently report dissatisfaction with care they receive, which is often related to inadequate pain relief (Dorsey & Murdaugh, p. 45). Inadequate pain relief results in a poor quality of life, passivity and aggressiveness when dealing with care providers and heightened distrust between SCD patients and their providers (Strickland et al., p. 37).

I have had a nurse tell me, "Don't expect all your pain to go away." I have been discharged in pain and had to crawl through the ER to the waiting room on my hands and knees, while nurses looked on. I have had to wait for hours for someone to help me to the bathroom, and it was the woman who came to mop the floor of my room, that walked me to the bathroom. I have had a doctor tell me "shut up, you don't know anything." I have had a nurse say to me, "Why are you crying, you should be used to this by now." These are just my stories...and I am a nurse myself, and have been exclusively only to the ERs of the Hospitals where I have worked in. So I imagine that your patients are coming to you with the same history---or worse.

So I come to you, with all this baggage, in pain, and I'm asking you to help me.

What you do, well....that's all on you, but realize that as a nurse, you are supposed to help people...and not harm them.

I spent this past summer working with SC patients and, with their help, made a scientific poster and brochure expressing what SC patients wish others knew about living with SC. This post very very accurately reflects what most SC patients feel. Many many kudos to you for expressing this so well. Clearly we still have a ways to go in educating the rest of our profession about SC.

[phyllis525]

Spiderella...KUDOS TO YOU!!!! as a sickle cell warrior!!!

I congratulate you on your professionalism and advocacy.and courage to wake up everyday to 'the unknown' aspects of SCD variability......there is so much more education that is needed for all medical professionals. As a NP I am often disheartened, frustrated, and discouraged by the lack of empathy displayed by nurses toward SCD patients. http//:http://www.scdstresstudy.com is my dissertation study website, my attempt to address the pain and NONPAIN stressors and the effect on QOL of adult SCD patients. Until there is a cure, there is hope. Know that you are not alone, you have clinicians, researchers, nurses etc. who BELIEVE your pain experience and work daily toward finding the cure...just don't have as much federal money to do so. Until there is a cure........you have us. God's Peace & Good Journey

[SharonH, RN]

Please dont come to the conclusion that I am oversteping my boundries or making unrealistic statements.

I'm afraid that is exactly the conclusion I must reach. You are suspicious of SCC patients because they do not react to their illness in the way you feel appropriate. That is the very definition of overstepping boundaries.

I too have taken care of many SCC patients over the years. Next to drug addicts, no other class of chronic pain patient seems to inspire so much resentment from healthcare professionals. It is not uncommon to label them as "drug-seeking" or "frequent-fliers" as though young people want to spend most of their lives lying in a hospital bed. In my experience, they fear a slow response when they ask for pain meds so they take action to ask for the drugs as soon as they can have them. That's a learned response to the system. Think of what part you played in that, talk about a power play. It must be terrifying to be at someone's mercy in that way.

As for them not eating, has it occurred to you that maybe they are not hungry? Hospital food is not that good. Maybe they just don't like that.