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Open Letter To Doctors

What if it was you, in pain?

One day, not so long ago, my life changed. I woke up to pain and after four years that pain has never ceased and, has gotten steady worse. Four years ago I believed the worst part of my ordeal with pain to be over. Pain from Avascular Necrosis that took my left hip. But when I went to the doctor, it was decided not to be a return of AVN but something else. Something that would ultimately lead to two, new diagnoses added to an already long list of ailments and more pain.

 

It was already known I had Degenerative Disc Disease, Avascular Necrosis (Total Left Hip Replacement in ’10), Chronic Migraine, Irritable Bowel Syndrome (IBS-d) and Asthma. Now, there was Sacroiliac Joint Dysfunction, Rheumatoid Arthritis (Inflammatory and Psoriatic) and Fibromyalgia. I also struggle with Anxiety, OCD, PTSD and Bipolar disorder. So many things have seemingly short circuited in my body in such a short time. So many symptoms on any given day that it is a constant reminder that nothing is the same. The number one symptom that is ever present: pain.

 

Four years ago I started on Tylenol with codeine. Then I progressed to hydrocodone and Zohydro and Balbuca and Hydromorphone, to no degree of success. Now I am on Nucynta and I can make it through my day 40% of the time. The other 60% I am struggling. It’s hard and I cry a lot. But you know what? 40% is good and I am grateful for that. Without my medicine that 40% is gone. So I ask those doctors out there who want to take medicine away from patients- why? The opioid crisis?

 

I think I’ve read pretty much an Odyssey’s worth of information on the opioid “crisis.” And it is not that I do not believe it because I am a patient taking opioids, nor do I want to take away anything from those families who have lost someone to opioids, but in my opinion, it’s bad science. I have read the CDC report, I have read opinions, I have read opinions of doctors and of patients. In my opinion, it’s bad science because it lumps people together that do not have a problem and those that do and while I could get into my own observations, this isn’t what this is about. This is about the 126 million pain patients that are sitting on a very precarious ledge, not knowing if tomorrow they are going to be able to get their medication that gives them their 40% or 30% or 20%. Because no matter the percentage, it’s their bit of pain free or even just comfortable, that helps them get through the day.

 

What if it was your son or daughter? Mother or father? What if…it was you I am not claiming I know anything other than what I read. But what if you could not practice your medicine? What if you were in too much pain day-to-day, to practice and see patients?  I’m not a doctor, nor do I play one on T.V., but at 55% of the population, I’d be worried about myself and my future with regards to pain. If you had 55% of the population with Ebola, you’d be well on your way to epidemic and hysteria. This sounds like epidemic to me and so what are you doing about it? Taking patients’ medicine away. Their lifeline to that 40%. It’s not right. But oh well, right. Not you.

 

I would sit down one day and think about how you’d want your family to be treated if you found out they were living in day-to-day pain. How you would like your partner to be treated? Those closest to you. And when you have an answer, think about it really hard. Then, take a look at what is happening in the world, because I doubt very much it is what you thought. The world is on fire with this opioid scare and those patients in pain are the ones being sacrificed. I thought you took an oath to do no harm. Isn’t this harm?

 

Respectfully,

Liza Zoellick

Chronic Pain Patient

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The Green-eyed Monster

It’s been a pretty heavy week. So, I am going to close it out with something a little more light-hearted. It’s Friday and I think we all deserve it, right? Good.

There are times that green-eyed monster rears its’ ugly head and I really feel the pangs of jealousy. Given that there are a lot of things I could feel jealous about, you are probably wondering what it could be? Do I wish I walked without a cane? No. I actually think it’s really spiffy. I want to get flames for it or paint them myself. Do I wish I didn’t have one of my chronic illnesses? Well yes, and a resounding no. I think that while my chronic illness has really complicated my life, that I would not be who I am without the experience of it and so no. There’s no wishing I could somehow alter time so I wouldn’t have these issues. While I like the Sci-Fi aspect of it, I am pretty entrenched in who I am and these chronic issues are a part of me now. What does that leave? Sleep! Yes, my friends. I am jealous of sleepers and nappers.

My amazing husband is one of these. He attributes it to being in the military and so he is able to fall asleep in 2.5 seconds, while we’re in the middle of a conversation sometimes (I’m only exaggerating a little bit), and even after he’s taken a nap. Oh, would that I could have such luxuries. Which, on a small tangent, is always something I laugh about when people hear I work from home: “Oh, you are so lucky! You can take a nap whenever you want.” My face shifting to the expressionless emoji because unless I am sick or truly sleep deprived, I don’t nap. And even sometimes when I am sleep deprived or sick, I don’t nap. And when I do nap, I never go to sleep early. Sleep is truly my nemesis. Which is amusing in a lot of ways, because sleep is something we, as chronic pain patients need. It is restorative and helps us heal and here I am, most nights and after implementing many of my own advice, awake at midnight or 1am. Which is not even touching the surface of how long I can stay up, as I have pulled all-nighters, begging for sleep to come and it never does. Now, however, I am on a medicine that does seem to help and those really late nights have been more spread out.

 

It’s a running joke around my house the difference between my husband’s sleep patterns and mine. He’ll give me a kiss goodnight at 8:30 or 9pm and I chuckle as I watch him go at “Grandpa Hour” and if he asks if I am coming to bed soon, there’s likely to be a sarcastic retort of, “I got sleep three years ago! I’m good.” But the humor aside, I do get serious pangs of jealousy when I can’t sleep and he’s lying there snoring mid-sentence. Generally, it’s pain that keeps me awake. And if it is not out-right pain, it’s not being able to get comfortable because the way I like to sleep hurts too much. So, really, it’s all pain as I think about it now, just sometimes the pain is more in-your-face than other times. Other times still, it’s your garden variety insomnia with a little hint of mania. Something via the bipolar that I think is like a little spice to keep things interesting; keep me guessing how I try to manage it. All the while I stare at my husband while he is sleeping plotting… (just kidding).

Despite how this is all sounding, I do not resent my husband being able to sleep. I am mystified over it sometimes, but I do not resent it. I am glad he can sleep. I am glad one of us is getting the recommended sleep that is advised. In truth, I get a lot done when I can’t sleep. I write a lot and I think about a lot of things I want to write, so I think it is actually a productive insomnia. The only times it is not is when RLS joins the party. Damn RLS is always such a drag at these soirées; doesn’t want to play by the rules. Those are the times I wish I had a hopscotch and the ability, to actually hop, so I could get some energy out of my legs when they act up. I always try to look at the silver lining. Insomnia or painsomnia just means my work hours have been extended and I try to use the time wisely. I know that chances are I will be sleeping earlier the following nights, when the insomnia ends.

 

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I Tried 10 Hacks for Chronic Pain

Let me tell you about my favorite and those that didn’t work so well (for me)

 

1.)   Round Health: App for Medicine tracking on phone: This app is the best thing ever if you forget to take your meds. I have serious issues taking meds. My pain meds, not so much, but everything else my spoonie brain goes into effect and I can’t remember. You can program your meds, your dosages and the time you want to take them as well as up to a 2hr breadth of time where it alerts you that you have to take your meds. So, if you take meds at 9am. Between 8am and 10am you will get an alert to let you know.

 

2.)   Spoonie Nest: Water, meds, phone and charger, Kindle or Nook or Tablet, purse with hard candies and pencil bag with pens and pencils, notebooks you might need, lap top and charger: My nest and writing hub is my bed. I will typically have everything I need from lap top to pencil case all with an arm’s reach radius (barring that I don’t forget ha ha), but even so, it’s only a few steps away. I try to make life easy for me. I’d also advise, if you can and need to, having a cooler with drinks and lunch that you can pack up the night before with/or without help, and then you really have everything you need. More spoons!

 

3.)   Essential oil and diffuser: Cigar boxes are my friend and no, I don’t smoke cigars. But essential oils fit in there perfectly. I keep them in my room, along with the diffuser, and all my favorite scents that make me feel better. I have one that is 800ml and I can keep it going most of the morning and I like putting in a blend called Calm. It makes me happy.

 

4.)   Sticky notes for notes around the house/ Using One Note on Surface: I use the One Note like it’s going out of style. I love the heck out of it. Sticky notes for the house, I am still getting accustom to. I think I need bigger ones. I made the mistake of getting smaller ones that fit like 5 words. Like writing an abbreviated Twitter. Sometimes I am wordy. So definitely yes on the One Note and we will have to see about slightly larger Sticky Notes.

 

 

5.)   Slow Cooker: So, pros and cons here and maybe you won’t agree. Pros are the convenience and clean-up. Cons are that sometimes I will forget what I am doing and look at the time and it’s like 2pm and I can’t throw something in the crock pot and expect it to cook in there in 4hrs. Well, some recipes I could, but it’s almost never the ones that I plan for.

6.)   Bullet Diary: I am going to have to revisit this one. I love the idea behind the Bullet Journal but, the way I am, very creative, it takes time away from other projects I have and I am still a little unclear on the purpose. Because if the purpose is to make me more efficient, I am failing miserably. I have thought of only a bullet journal for menus for the week. Right now I use a regular note book, but I like the idea of keeping track of food I eat with it too, to help narrow down some issues with IBS.

 

7.)   Basket with non-perishable foods for those days when you can’t get out of bed. Keep it in your closet or under your bed, just keep it close: I can’t do this because I have pets that like to eat and I could see all my granola bars gone and a very sick dog in my future. But, just because I haven’t tested it out I thought it was worth writing about. I can see keeping a stash of non-perishables under the bed in a beer box. Most liquor stores keep them or try to recycle them. You can probably go to one and get a couple. If you have room in your closet, which I don’t, you can store them there safely away from pets.

 

8.)   Wet wipes and dry shampoo: No shame for No showering. Wet wipes are something the military uses when they are out remote in the desert and other places. You clean the essentials and leave it at that. Pits and Pubes is there motto! It may feel gross, but as someone who was on bed rest for 3 months, let me tell you, these saved my life. The dry shampoo is ok. I’ve tried it twice. I think my OCD is twitched a little by this, because I associate clean hair with water and shampoo, but you can get away with a few cleanings without it and I go 3 days in between washes. So might as well use it in between to not feel dirty or look greasy, if you have issues with that.

 

 

9.)   Letting your hair dry au natural. Don’t freak about curls: This one is hard for me. My hair is between really curly and straight. So, it’s wavy and curly in some places and if I dry it, I can get it straight without a straightening iron. But it takes so so so long. I hate it. So, I have been letting it dry on its own, to the point I have to dry it and then I dry without using a brush and just use fingers. It doesn’t look as pretty, but on those days, I am exhausted, my body thanks me. Most days though, I can’t do the curly/wavy thing. I literally look my Medusa. But It may work for you.

 

10.)                   Bed Yoga: Yes, there is a thing. Yoga in bed can be something to help wake up in the morning and function. It can also be utilized to get to sleep at night. I think for reducing anxiety it is wonderful and if you are a blogger or otherwise work from home, doing these little exercises in between assignments is wonderful. It revs you up for the next blog post of research you have to do.

 

 

 

Why Would You Want To Do It?

**Warning**Triggers Possible**

“Why would you want to kill yourself?”

I’ve heard this question posed to me before and often in conjunction with, “You have a husband and four, beautiful children. Aren’t they worth staying alive for?”

The first thing I would say is: I didn’t W A N T to kill myself. What I wanted was to stop hurting. I wanted to stop existing in the kind of torment I was experiencing. It wasn’t a case of mind over matter either. When you are in that dark place, where you are contemplating thoughts on suicide, you just want the hurt to end.

The second thing I would say is: In my case, because I am not sure about others, I was not thinking about my husband and children. Not in that way, at least. Instead of thinking: “What would their lives be like with me gone?” I was thinking: “My life would be better with me gone.” It’s almost as though I was seeing this as some kind of twisted mathematical equation, where you can eliminate that x with no consequences, instead of knowing that you have to take that x from both sides. I did not think about them at all, even though I love my family (husband and children and parents and pets). A suicidal person, like myself in that moment, is completely submerged in self-loathing and pain.

The third thing I would say: “Does not having a family make it okay or somehow more acceptable to kill yourself?” I should hope this would be a resounding no, but when people bring up my family, I get very upset. It is not that I did not care. In fact, it was almost like I cared too much. My depression and mania often wreak a lot of havoc in my household. I was trying to spare them.

People everywhere, regardless of having a love of their life and kids or not, attempt and commit suicide all the time. How this should make a difference eludes me and furthermore, irritates me. Those who are alone have sometimes made a conscious decision to be alone. Some, do not want to be alone and struggle finding people who will understand them past their mental illness. Just because someone is alone doesn’t mean that they are unhappy, either. And, just because someone is alone, doesn’t mean their attempt at suicide is somehow, more understandable. I have heard people say, “Well, if she had someone she wouldn’t have done it.” Not directed to me, but others. Suicide has nothing to do with having love or having happiness. It is a perception of your world, and it is very, very bleak, and people who have love and happiness and money, commit or try to commit suicide all the time. We need to shift this perception and turn the focus to mental illness and trying to understand it and ending the stigma attached to it as well as the idea that if you have it all, it will never happen to you. Because it can. It happened to me.

None of this is to say that those closest to you should not be a huge reason for you wanting to live. It’s been roughly seven years since my last attempt and part of my being mentally healthy, is remembering that my family loves me, and loves me even in my bleakest moments. I work very hard to keep that on the surface of all my thoughts and talk to my husband when the darkness creeps in and tries to steal it from me. Depression is an insidious beast and sometimes it is something very innocuous that happens which causes it to slide its’ icy hands over you. I feel it takes a village to be able to recognize it, meaning your significant other, your children, your parents, your friends and your co-workers and because it takes a village, we all have to understand mental illness and not be afraid of it and not shame the person who has it.

*About the picture: We all need to reach out. Be kinder. Smile at people. You never know what someone’s going through and you never know when your smile, or your friendship, might be that beacon of light they need to keep the darkness at bay. 

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For the Love of a Dog

We will return to our regularly scheduled blogs next week, but with the unexpected and sudden loss of one of our dear pets, I have a need to take a bit of a detour and use my blog as a mechanism toward healing.

One June 11th, at around 8am or so, we were forced to put down our precious Bowie, to free him from the pain that he was already in and would have progressed. It happened suddenly on the previous day. He had been acting normally until around lunch time when he had an accident in the living room. My first reaction was to scold him for pooping in the living room, but as he trotted into the bedroom, I knew instinctively, something was wrong. He plopped himself onto the carpet and just looked ill. Initially, I was concerned, but panic had not set in yet. I thought his adventures in the cat tray and eating that, had gotten him sick. But apparently, cat poop is a delicacy to dogs and they do not get sick from eating it, just the litter. What happened next was fast.

After an hour or so he vomited on the ground where he lay and did not even stir. If you have a pet, you understand that generally speaking, they don’t like laying in their mess. That was the first alarm bell. Promptly after this, he began to experience diarrhea. What was different about this, as opposed to just a case of upset stomach, was that his gums were pale and he was cool to the touch and there was an instance where it felt like he was slightly disoriented. I am lucky that I have my daughter, Megan, who is studying to be a Vet Tech, or I might not have known and Bowie would have died fearful and in pain. The other indication something was wrong was his lethargy. Bowie was a high energy dog and there was little that dampened his energy or spirits. He lay there, allowing us to look him over and fuss, and didn’t even wriggle. I made the decision right then, to take him to the ER, where he further deteriorated, and rapidly.

BluePearl Animal Hospital was amazing in their treatment of both Bowie and our family. The doctors, Villanueva and Ying, were empathetic and kind and took care to explain to me everything that they were discovering through their examination and how dangerous it was to him. The technician there, Katherine (I am hoping that is her name), was also kind-hearted and skilled and treated our Bowie like he was her dog. From the moment we arrived, in a panic, with a very sick dog, to the end and giving us time to be with Bowie before and during the procedure and afterwards, they were absolutely stellar. I believe some places will treat your pet like he is a patient and may provide very good care indeed, but these doctors and technicians treat the animal as family, which they are.

Sadly, it seems that Bowie fell victim to a very, aggressive cancer that caused all these symptoms. There was no real way to find out what kind of cancer without a plethora of tests that, in the end I did not need. I chose to do the test to measure the fluid that was building up around his heart. The best case scenario that would have bought him some time, would have been clear fluid around the heart that was slow to build up. Instead, the fluid was blood and began to refill almost immediately after it was removed, which was ultimately what my decision for euthanasia hinged on. The doctor explained that this was indicative of a very aggressive form of cancer, and that he’d been living with it for a while, and there was little hope that he could get better. Once I was armed with this information, I knew with no uncertainty, that the decision to make Bowie as comfortable as possible and show him mercy, was the best course of action. It doesn’t make saying good-bye easier but assuages the guilty feelings that you are taking a life.

I believe our Bowie chose us. That he ended up on our door step that hot, June, day for a purpose. That purpose: to teach us about love – unconditional love- and unfettered joy and laughter. He was a warrior from the day we laid eyes on him with a badly broken hip and lacerations, on our front door step. I used to kid around that Gandalf must have carved into my door a sigil for wayward Pitties, as that month we’d found several. But it was him that we kept. His body bore the scars of a difficult life, both literally and figuratively. I hope he loved every minute of his life with us, the way we loved it with him.

You can rest your head now Bowie.

You gave all your love without reserve.

Brought us immeasurable joy and happiness in the form of toothy grins and floppy ears.

Run with joy. Find your pack. Wait for us over the Rainbow Bridge; we’ll be looking for you when it’s our time.

We always thought we saved you, but through the love of a dog, you saved us.

Love,

Your Family

 

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Just Because I Look Okay..

**WARNING**POSSIBLE TRIGGERS**

 Doesn’t mean I am..

I remember the profound sorrow I was feeling the first time I tried to kill myself. Yes. The first time. There were two others, but I am only going to talk about the first one because, I feel if I had ended up in a hospital that deals with suicide, like I did the third time, I never would have attempted the second time. That taught me a lot. It wasn’t that I had tried to take my life in some fashion that made it more believable, it was that they told me I needed to spend time in a hospital and I went obligingly. I would have the first time too, but no such offer was made. They sent me home. I know why, and we’ll get to that but let’s back track.

I’ve often put the blame of my attempted suicide on my ex-husband, who is now deceased by suicide himself. But that is not the case. I had choices. Our marriage was awful at this point but I was the one who went into the bathroom and swallowed Aleve. Our daughter had just been born a few months prior, very early, and I was suffering from post-partum depression as well as an undiagnosed Bipolar. The pregnancy had been ridiculously tough and I had spent the majority of the pregnancy in the hospital where they were attempting to keep the baby inside of me for as long as they could. I was 21 and I had a young daughter already.

My daughter was born amid chaos after we’d been life flighted to this hospital where, just before, they thought we were going to die. I don’t recall much, except for flashes of light and shadows and pretty sure my grandmother was there with me. It wasn’t my time. Funny how I thought I had to fight and then a few weeks later, when I got home, a fight between him and I would provoke me to try and kill myself. But that is how these things work sometimes. It’s not one minute you are fine and then you swallow some pills. It’s weeks and weeks of being not fine. It’s weeks and weeks of having to put on this façade of being fine until something, in my case this argument that, makes that voice inside your head screaming that you are better off not here become deafening and that- that, is what prompted me to lock myself in a bathroom and try to kill myself.

I remember swallowing the pills. I remember him breaking the door in. I remember going to the hospital and being put in a room with glass windows so I could be seen and feeling humiliated. I was scolded by a doctor. Who pretty much told me: “What were you thinking when you have an infant daughter in NICU?” I stared stupidly at him and said: “I wasn’t thinking, Sir.” His reply: “Well you better start thinking for her sake.” My initial reaction was more sorrow and self-hate. I was sitting in the hospital room where I had tried to kill myself and she was fighting to stay alive. I was filled with self-shame. I called the NICU, and I told them what happened and why. Even though why was relative. Just because what happened did, didn’t mean I had to do what I did. It was the wrong response. The right response would have been to just leave him then. Instead I waited 15 months.

The next the doctor came in to see me. I told him I called NICU and I wanted to go home for my baby. I watched as his face lit up like a Christmas tree. “Yes. You have a baby to think of. Focus on her. Everything else will get better.” These conversations are not exact but recalled to the best of my ability because I have gone over them in my head so many times. My mystification that he was going to let me go. In my head my daughter was okay. She was in a place that was taking excellent care of her and she was being fed and she was not going to go hungry if I went away a little while. She was a tiny, little baby. She’d have no recollection of this ever. But no one told me I’d need to get help in a long-term facility. No one recognized my bipolar. The doctor was more than pleased with my response and he sent me off with a diagnosis of post-partum depression and a prescription for Prozac. I found out pretty quickly I was bipolar as the meds sent me into mania that I ended up in the ER again for. But to make a long story short, the doctor did not recognize a suicidal girl just trying to get home and it led to two more attempts at my life.

I feel that people are way too accepting of the guise depressed people will adopt, especially if they are in danger of being found out. Then we really ramp up the normal. My attempts were always preceded by very anger fueled fights. It was the collapsing of a very fragile, delicately maintained exterior. Like a house of cards, what had been seen by the world just collapsed and all the pain and anguish I’d been feeling bubbled to the surface. I think many of us who have been suicidal have felt like they are living in a shell of themselves. I think people need to truly pay attention to their loved ones. Listen to their words, there are clues. I think for me; my words were like armor. I could tell everyone how perfect everything was and it was in that story of perfection that people should have seen through it. Because like grandma said, if it looks or sounds too perfect, chances are, it isn’t. I think for some it’s strength. They get called “the rock.” I think sometimes it is those strong ones that you must delve deeper into to be certain they are not covering for a sink hole of sorrow.

I am better now. I am a suicide survivor and it does not escape me that my position is unique. I have attempted suicide. I have lost people to suicide. I understand how someone can get there and I think I need to use this unique position to help people. I want them to know, as alone as they might feel, that they are not alone.

 

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Well, at Least You’re Not Dying

(Followed by) It could be Worse

It never fails that I discuss my health with someone who I trust and I hear the infamous, “Well at least you’re not dying,” which is typically followed by, “It could be worse,” and more often than not concluding with, “Get better soon.” Please, please, I beg of you who are reading not to make this mistake. If someone you’re close to confides in you a recently received diagnosis of some, incurable (but not terminal) illness, do not tell them “Get better soon.” This will almost always lead to hurt feelings and chances are we are already feeling vulnerable as not many people know or understand our illness. So, while we won’t get angry and we won’t say “How dare you ask me that,” we’ll just nod our head, probably say “Yeah, thanks,” and then just fade into our little chronic illness world where those who share our condition understand what we are going through.

Everything about each of those “well wishes” is incredibly wrong and it’s not your fault if you don’t understand. You are no different than the majority of the population who doesn’t know and so this is partly the reason for our silence; the other reason being the doubt that surrounds many chronic illnesses, leaving us feeling embarrassed we have this diagnosis and also questioning the validity of it. I’ve never really expected anyone to understand and I never took it personally when someone said, “At least you aren’t dying.” I know they mean well, but the crux of the matter is: while death might be permanent and you might think my situation is better, it’s not. There is little chance in the next 20 some years there will be a cure. They’re still searching for a cure for cancer. So, I will be 60 and still have this disease. I do understand my situation might improve and that might be something to stay positive over but, it’s hard keeping positive every day for 20+ more years for only maybe, a small change in my well-being. Is that pessimism? Maybe? I’d like to think I’m more of a realist. Even if I am of a sarcastic bent. It is truth I speak from my perspective.

Truthfully, I do not believe there should ever be a distinction between chronic pain from a serious illness/injury and cancer pain. Both are savage to the people experiencing it. Long term pain is savage just by virtue of long term, whether it is from cancer or RA. I think that until we reconcile this discrepancy, that we will not be able to treat chronic pain effectively and there will be continued problems in our health care with doctors not taking pain patients seriously, because there is this idea that “Well, it could be worse.” No. I am here to tell you that it can’t get worse, and while I would never presume to try and usurp the attention from cancer patients, because cancer is devastating and awful, I want light shed on those who are sitting in the shadows, hiding with their chronic pain because people won’t believe them. I want them to know that their pain is just as important.

My parallel drawn between cancer and chronic pain is purposeful. I have known people to have cancer, to fight it bravely and die. Some who are still fighting with every ounce of strength. I see in their eyes the battle and the exhaustion and I understand. My condition is not a death sentence which automatically shifts people’s empathy. They figure if it is not so serious that it could kill you then you should be okay and it might be a bad lot in life, but you’ll just have to soldier on. We all have something right? Unfortunately, this attitude is reflected in doctors as well and the chronic community is paying the price with an “opioid crisis” and doctors who downplay the pain a patient is going through. We need to sit around the table and talk about this. Have some true, honest discourse about the fate of our chronic pain/illness patients. We need to reevaluate: “well, at least you’re not dying,” and do better than casting our patients aside without enough meds and in so much pain that they wish they were dying.