What is up with these Sickle Cell Patients?!

SS.audible · Apr 23, 2014

SS, patient here. I'm really sorry if offended anyone ever.

Just going to try best to clarify some points.

1.If we say 10/10 while not looking it, is due to preventibg it.

ex. a Sicklers pension for pain is limited. After a certain point, who we are in and out of pain completely changes on endurance.

2. If we're distracting ourselves, we do it to managae the pain. If you don't see me in pain, its because We hate writhing, but that is not always controllable.

3.A lot of us have evolved in different ways, psychologically mainly. We will reserve/steel ourselves if we think we must, usually this is done keep family and self from crying, we do not purposely mean to be rude. Unless the person actually is rude, which is scarce to me.

4. When you make preconceptions, we suffer, greatly. Yes, there are people who have crazy high tolerance and seems to be pursuing drugs. We as humans who go through dependence may believe we are addicts because of the sheer amount of painkillers to get someone to stop screaming. One doctor paced my room for an hour while I screamed in pain, I could tell he was worried over some reprecussion. That day I wanted to scream at him, but I didn't, I assumed that a minor recieving hydromorphone was serious and gave benefit of the doubts he wasn't doing it on purpose. Perception is the key concept.

5.We can intensly dislike hospitals in general. After so many hospitalizations, and pain, I'd gotten tired with the judgements, the holding back and perceptually endless waiting times. Pain compresses time! It wasn't the staff's fault though, it was the psychological rebound. I'd get sad every time I went to the hospital, tired of the pain killers, tired of feeling numb, tired of the **** feeling and constipation, tired of being alone, all around pretty much in an emotional pit, caused by the chronic illness itself and the reprecussions.

6.When it comes to Sicklers, some of tire quickly, this can imprint on personality for a while, or forever.

7.I haven't been able to sleep, throwing up, etc. as an example, If If an episode sent me to the hospital right now, I wouldn't be a prick, but I have a difficult time staying friendly and showing courtesy. This isn't on purpose, as the pain gets worse, our cognitive functions alter in variable ways. Attitude change, patience, level of thought put into human interaction becomes difficult to process.

7.Some of us have to rush to the hospital alone. This is never a pleasant experience to anyone involved, we're sorry for that.

For this reason, some have caretakers, my mom being mine. I become sad myself making her cry. If this happens, I'm not going to be prick (no one derseves it), but I won't be concerned with politeness.

Please keep in mind, I am just one sufferer of Hb.SS, and all I've written is from my personal experience, another sickler can be completely different!

twinkerrs · Apr 23, 2014

As someone who experiences a type of chronic pain from lupus it sucks to be labeled. I do not take pain meds except ibuprofen because I want to make sure I have options later that will still work. My rheum does not hesitate to send me out with a Vicodin prescription every visit with 3-4 doses a day written on it. Remember this is not a chosen addiction but one those of us in the medical field have contributed to. It is a our bodies natural reaction to the medicine that turns into a psychological reaction. As I am sure we all know addiction is ugly and can make people ugly but if they hurt they hurt. End of story. I know I am grouchy when I hurt and I am sure all of you are as well.

danggirl16 · Jun 25, 2014

I've taken care of many patients with Sickle Cell in my career and I've read through the majority of the postings here. So I have a few comments.

First, I've noticed if the patient doesn't know you they are not going to trust you and for good reason. They have been subjected to health care workers prejudices and degrading attitudes their entire life. More often than not it seems like no one sees them as a person but (and I quote this from a co-worker, appaling!) "that pain in the a**, manipulative, drug-seeking b***ch in room 217 is driving me crazy!!". How would you feel if you knew 75%+ of the time everyone entering your room thought of you that way??

When ever I had an unfamiliar patient, I let them know that my priority was the same as theirs...to make them as comfortable as possible. I always asked what works for them (they should know!), let them know that I would do everything in my power to help them and then I followed through. Once they knew that I was not going to be judging them and that they could trust me...miracle of miracles...the "attitude" disappeared.

A lifetime of pain and suffering, both physical and psychological, is going to wear a person down. There is a point where patients with chronic, debiliatating, painful diseases have to use what limited energy they have just to exist...social niceities become irrelevant.

Additionally, their entire lives are being disrupted constantly. How can you maintain a happy, optimistic attitude when you can't plan anything in your life with any certainty? Frequent hospitalizatons and there goes another job, there goes another relationship, there goes the last semester of school, etc, etc. Even family members disappear so the patient is left in a hostile environment, scared, sick, alone, anxious.

Sometimes I think the "demanding, manipulative" attitude is an attempt also to exert some control over a situation and environment where these people have had most of their control stripped from them.

Next, I do not understand at all why they are labeled as "addicts". They have a chronic, extremely painful condition which requires medication (among other treatments) to manage the symptoms. Most have an incredibly high tolerance to opioid medications but that is an expected, predictable physiological effect of long term exposure. Another expected, predictable physiological effect of long term exposure to opioid medications is a physical dependence.

Watching the clock or setting alarms is also not necessarily "drug seeking behaviour"...it is an attempt to keep the pain under control, to prevent it from getting worse. And guess what? It's partly our fault. Obviously we cannot be in every patient's room right on the minute something is due...but the 30 minutes we are late can be enough to make their pain out of control again. It's much easier to stay on top of it...once it is out of control, it can take hours to stabilize it again. NONE of this stuff automatically makes someone an addict.

[[A personal experience: after a major abdominal surgery I had medication ordered q3 hrs prn. At 2 hours and 53 minutes, I called the nurse for the medication. Over the intercom I was told "You have 7 minutes before you can have it" Seriously?? No one came after that 7 minute period so I called again to request it...45 minutes later the nurse showed up to give it. *this happened over and over during the shift* ]]

OK. I guess that's it for now. To the OP, as a newer nurse, it's good to get into the practice now of a) making your own assessments and reserving judgements on patients instead of automatically adopting the group attitude conveyed in reports and b) integrating the fact that patients are people first into your practice and c) avoiding stereotypes associated with any particular diagnosis.

They have emotions and they have reactions - pleasant or not. 9 times out of 10 they are not intentionally trying to be difficult (yes there are ones who are the exception to everything I've written).

Remember, as you do your tasks, fulfill your orders, and complete your charting...don't forget to also to provide nursing care.

Here.I.Stand, BSN, RN · Jun 25, 2014

This is an old thread and this could have been said already (I didn't read the replies), but frequent pain and hospitalizations since the day you're born can do things to people. I can't even imagine. I took care of a handful of SC pts early in my career when I worked med-surg; I also took care of a lot of adults with CF--similar with the chronic illness, frequent hospitalization, lack of control issues.

Some of them were difficult people, some were perfectly "nice." But that's true of people in general.

I'm sure some of the difficulty stems from the way staff treat them--"just wait and see..." they "like their meds," they "do NOT have pain 10/10. Look at them watching TV?"

Keep in mind with these people, with such severe pain and NEEDING narcs to treat it, they can build up a tolerance. One young guy I took care of took 20 mg of IV Dilaudid q 2 hours. Yes, I said twenty. He also took 50 of benadryl IV q 4 hours to combat the itching. Large frequent doses of narcs does not make one an addict. It means that they are farther up on the celing-less dosing because of frequent need.

They tell you exactly what med/dose to use? This does not make them a drug seeker--it means that they know their own body and what works for them. They tell you exactly where to find a vein? That may not mean a thing other than they have been stuck so doggone many times that they know which areas have a higher success rate. Would YOU want to keep quiet and let your RN poke you like a pin cushion, when you know perfectly well that your hand veins blow every time? Or would you want to save BOTH you and the RN a lot of trouble and tell him/her through which veins s/he can get better access?

Finally, someone with chronic pain are going to behave differently than someone who's never so much sprained an ankle and then broke a dozen bones in an MVC. If they are accustomed to having such severe pain, they're NOT going to be writhing in bed, crying, moaning. Just because they don't behave like you would, doesn't mean they don't have pain.

Cricket183, BSN, RN · Jun 27, 2014

I realize this is an old post but I wanted to put in my two cents. I am (was) a RN in oncology for many years before being diagnosed with RSD/CRPS seven years ago which resulted in me being forced to go on disability. RSD/CRPS is a rare neurological condition that causes severe chronic pain. Chronic pain and chronic illness change who you are as a person. Even when you try everything in your power not to let it, it changes you. The first 1 1/2 years after my diagnosis I went without taking narcotic pain medication despite unbelievably high pain levels because I wanted to continue working. In the end, it just made things worse because it caused the RSD to spread. It started in my neck, right arm & shoulder but is now in my entire upper body and affects my heart and stomach internally. Pain wears you out physically and emotionally. It makes you less able to handle even simple things (like personal interactions). You just don't have the energy for it. (That said, it doesn't excuse outright hatefulness in my opinion.)

I have tried almost every treatment available to help my pain (PT, AquaTherapy, guided imagery, breathing techniques, Spinal Cord Stimulation, endless medications, etc.). I cannot tell you how completely desperate to be out of pain I was. On a daily basis my pain was a consistent 7-8/10. And when I would have a flare there would be times my pain would get to the point I would vomit and/or pass out. (And I had given birth completely natural, so I have a fairly high tolerance for pain.) You do become afraid of pain when you are pushed to that point. Every time your pain starts to go up you fear it's going to get worse than before and you don't see how that is even possible. You watch the clock and you will do almost anything to avoid that pain.

At one point I was on high dose narcotics, 32mg of Exalgo daily and up to five 10mg Methadone a day. (Bad thing is I was still in an incredible amount of pain.) Although not true for everyone, high dose narcotics changed my personality. It numbed my feelings and I didn't care about much of anything for years and years and the sad thing is I didn't even realize it. Six months ago, I made the decision to wean off narcotics (mainly because new studies show that opioids actually make RSD worse due to glial cell activation--fascinating research--but also to start monthly ketamine infusions which work more effectively if you are off narcotics because ketamine and opioids bind to the same pain receptor sites). It wasn't until I was completely off narcotics that I realized how much they affected me physically, emotionally, and spiritually.

If all that were not enough to deal with, I was only 40 when I had to go on disability. Being a nurse was a huge part of my identity. I loved nursing. I had just received my OCN (national oncology nursing certification) and was up for a huge promotion at work (oncology unit manager, my dream job). I was use to doing everything at work and home. Married, busy mom of 2 teen-age boys at the time. Suddenly, I couldn't even cook a meal, or wash my own hair. (Although, I have since regained good motor control of both arms there was a period of time when I lost use of both arms.) I also became completely reclusive. I was completely undependable. I didn't know from one day to the next, let alone one minute to the next, how I would feel. I couldn't make plans for anything. I missed my kids' ball games, concerts, and other events. I lost friends who couldn't understand why I didn't go anywhere with them any more. I couldn't have sex with my husband any more without severe, excruciating pain. It all adds up and wears you down and changes you.

Right now I am receiving high-dose ketamine infusions for four days every four weeks. It doesn't eliminate my pain but it does knock it down to a consistent 4-5/10 daily. I still have periods of severe break through pain that I use AquaTherapy and techniques I learned from a chronic pain psychologist to get through. The treatments are grueling and financially draining but worth it at this point. The hope is that eventually we will be able to extend the time in between ketamine infusions. My ultimate goal is to return to nursing in the next two years. I know that may be unrealistic but right now it keeps me going.

jadelpn, LPN, EMT-B · Jun 27, 2014

Chronic pain absolutely changes a person. Imagine the worst pain you have ever felt. Times 100. Constant, nagging, and unrelenting. And guess what? You have to try and function.

Fast forward to having to go to an ER or your MD with such pain. It is a giant effort to even move. And then you have a caregiver who is judge, jury, and eye rolling over your "little aches and pains" and "drug seeking behavior".

Guess what? They ARE seeking drugs. Much like we all seek drugs when we are ill. And that is ok.

What is not OK is to assume we know that someone is "faking" or "not really in pain". It is not OK to label someone a nuisance because of their need to function.

People who have sickle cell are in constant pain. It is not a disease that is controlled well or easily. And if one looks at it objectively, if I were in constant unrelenting pain 24/7/365 I would want the most medication possible. I would watch some dumb TV show as to not go out of my mind with being consumed on how painful it is to move. I would be cranky...honestly, who wouldn't be. Now add nurse with attitude. Awesome. Now I would be really, really cranky.

After all, how many of us have said "If I ever have that happen, knock me out" or "if that ever happens to me, give me LOTS of drugs" when seeing someone in acute pain. Now, imagine that as a chronic situation.

We are not to sit in judgement. From patients in pain to the patient ordering the nurse around from pillow plumping to other tasks as they see fit, we are not going to get a warm and fuzzy for each and every patient. And not our place to do so.

Objective, non-judgemental.

dudette10, MSN, RN · Jun 28, 2014

This is an older thread, but I've been recently sent to a floor that accepts the SCC patients. In my experience, they are usually the nicest, most non-demanding patients I've ever taken care of. Maybe it's because I encourage them to call me about 10 minutes before their next dose of pain meds is due because I can then fit in the administration right after I finish whatever I'm doing at the time. Many of them have said, "But I don't want to bother you!" I tell them that it helps me because I might not remember when they are due.

dudette10, MSN, RN · Jun 28, 2014

We are not to sit in judgement. From patients in pain to the patient ordering the nurse around from pillow plumping to other tasks as they see fit, we are not going to get a warm and fuzzy for each and every patient. And not our place to do so.
Objective, non-judgemental.

The part about "the patient ordering the nurse around from pillow plumping to other tasks" is just ********. We have to manage our time, and setting limits is appropriate. And expecting to be treated as another human being whose sole purpose at work is to try to make you better deserves some *******ed respect. I do my job for everyone, and I do it well, but if I am constantly ordered around like a lap dog, the patient won't be getting any warm fuzzies from me either.

jadelpn, LPN, EMT-B · Jun 29, 2014

The part about "the patient ordering the nurse around from pillow plumping to other tasks" is just ********. We have to manage our time, and setting limits is appropriate. And expecting to be treated as another human being whose sole purpose at work is to try to make you better deserves some *******ed respect. I do my job for everyone, and I do it well, but if I am constantly ordered around like a lap dog, the patient won't be getting any warm fuzzies from me either.

Some nurses "dread" the chronic pain person, the chronic disease person, and some dread the "do this, get that" patient. There once was a patient that was fully functional, ready to be discharged, and complained to everyone that mattered that the nurse did not refill their water pitcher. However, late night ice cream from the snack kitchen was definetely something in the realm of this patient's function. And the nurse heard about it. From management. Now THAT is just *****.

And setting limits is just dandy, just don't set them too aggressively, as there has been more than one nurse who has been "spoken to" about their lack of customer service skills. Unfortunetely, the focus seems to be on that.

Christy1019, ASN, RN · Jun 29, 2014

On a side note, I have a question... In my 6.5yrs of ED nursing, I can't recall a single time I've taken care of a child in sickle cell crisis. Is it because their parents know to just go directly to a children's hospital? Or is it because they haven't developed such significant narcotic tolerance that the pain meds work more effectively for them at home? I'm just curious because I've heard from pts how they were already being given oxycodone/dilaudid etc by age 3-4yrs old.

Mz. Virgo · May 9, 2015

Walk a day in their shoes & you'll understand what they go thru in and out of the hospital on a daily basis. It's not an easy disease to live with & I admire the strength of ppl with sickle cell who hasn't taken their own lives bcuz of mean, heartless ppl. God knows their struggles, he knows their pain & only he can judge them.

Mz. Virgo · May 9, 2015

As a very young child I used to think All nurses were smart & educated after all one would think so if they made it through nursing school but as a teenager & now a thirty-five yr old female who suffers from sickle cell anemia I realize some nurses are just as uneducated about sickle cell & nursing in General as any other person on the streets. Reading some of these comments makes my theory a fact. If you knew anything about sickle cell anemia you'd know ppl with sickle cell have had this chronic & very painful illness since birth we have been giving these meds for long periods of time which makes the body build a high tolerance to the meds which means when in a PAINFUL crisis it may take more meds or a change of meds heating pads oxygen etc around the clock to ease this pain. To all that don't know what a crisis feels like, it feels as if someone is inside your body with a large knife stabbing you repeatedly & there's no way to stop them. It's 10 times worse than a baby ripping you apart during labor to make their entrance into the world. I apologize if some sickle cell patients are rude but I don't think if you're being stabbed you'd be too polite either. I've seen a lot of rude ppl in labor as well. I've had a lot of rude nurses & doctors in my experience. Ppl with sickle cell are made fun of & treated badly all the time in & out of the hospital.Some of our eyes are jaundice, some of them are smaller in weight than normal. Thank God I do not have as many pain crisis as I did before I had children & I'm also thankful my 14 & 16 yr old are fine but sometimes I do have a crisis once a yr & when I do I'm very hesitant about going to the e.r. bcuz some nurses & doctors hate to see us in the e.r. in fear of having to do serious work. In my experience I've had some great nurses & doctors but Ive also had my share of bad ones too which makes me ask them what were they thinking when they decided to be caregivers? Was it for the money or genuinely wanting to help people? Unfortunately there are ppl with ss that have become addicted to the meds but there are also nurses who are addicts as well. I had one who said she'd given me pain meds when I knew she hadn't bc several normally eases my pain & puts me to sleep for hrs. She'd injected herself with it. Thanks to a good watchful nurse no one would've known she wasnt giving pain meds to patients but taking them herself. Needless to say the police were called. Bottom line let God do the judging & just do what you went to school for, to be a nurse. Also a little kindness & empathy on your part can go a long way & I assure you you'll be blessed.