https://themighty.com/2016/09/a-lupus-patients-perspective-on-the-opioid-crisis/
Pain Patients
Shut Down The Stigma

Pain peeps: This is important and effects everyone who suffers. It also effects people all over the world. I’d like to do something powerful to make an impact.
Everyone I’ve talked to is deeply concerned about what is going on in this country (U.S.) regarding pain meds and how patients are being treated. I’m a pain patient afraid to seek medical help in a new state, and that’s a problem, too. No one should have to feel this way, but if you heard the horror stories I’m hearing, you’d be hesitant too.
I am going to interview as many people as possible, via phone or e-mail, and write an article for publication. Names can be changed or left anonymous if you’re uncomfortable, but your story is important. If you’re interested, please respond to this post. I will provide you with my personal e-mail address if that’s how you’d like to be interviewed or we can talk and I can listen to your story, whichever you choose. I am covering ALL pain disorders, no one is being left out.
The more real life stories about patients with pain, the better the article will be. I mean business. Please feel free to tell others I’m doing this by sharing this post (It’s probably the only time I’ll ever encourage mass reblogging.). Let’s shed light on the truth of the matter. There’s a big difference between addicts and patients. It’s time to shut down the stigma.
Bright Blessings & Healing Light to all.
#ShutDownTheStigma #PeopleWithPainMatter
It’s Amazing
It’s amazing how quickly life shifts. You think you know your place in this world, and the direction in which you are going. Then, often suddenly and unexpectedly, a letter, phone call, e-mail, or some form of communique shatters the floor beneath your feet. You’re left standing and asking yourself “Why?”, or in my case “Again?” There’s only so much I can handle in a day, but I’ve been dealing with horrible shit for the past eighteen years. When the hell does a person catch a break?! In this respect, I am trying to remain intensely positive because negativity doesn’t help situations one cannot control. The fact that I knew this would happen a few years ago is what upsets me the most. Sometimes, I hate the gift of premonition, and other times I am grateful for it.
On September 12th, I hurt my back. The pain has progressively worsened. I am terrified to seek emergency treatment due to the “war on opiates” and how badly pain patients are being treated everywhere in the United States. Massachusetts is no different. Every single day I have to hear about people overdosing in various parts of the state. Not on prescription pain medication, but on heroin. How is that MY fault, as a pain patient?! A representative for someone running for State Representative for this district was going door-to-door last Saturday, and specifically asked to speak with me. Obviously they’re looking for the millennial vote. 😉
Her first question was “How can Jen insure your vote on November 8th?” Boy, did she come to the right house. We spoke for about thirty minutes regarding Jen Migliore‘s policy for the opiate issue in this state. I said “Until she works to make sure pain patients get treated like patients, instead of drug addicts, she can’t count on my vote. Until she addresses it and does something to put addicts in a separate category from actual patients, she can’t depend on my vote.” We talked about other issues too, but I made sure this one was front and center. She assured me that if Jen doesn’t call me personally, someone on her campaign staff will. I’d actually be surprised to see her at the front door again because she’s already personally been here once, and that was to get her petition to run for office signed. She was a little too much the “made-up politician” for me when I met her, but it was brief and I will try not to judge a book by its cover, because all too often I am judged for “not looking sick”. She’s 25 years old and running for State Representative, and that takes guts. Is it terrible to say I want to re-do her makeup and make her look more her age?!
A few days ago a woman stared at me on the street and said “Oh my G-d! What a beautiful girl you are!” I was the only person in a full block radius she could have been talking to, but it startled me. If she hadn’t been old enough to be my Grandmother, I might have believed her. But then I got home (barely) and looked in the mirror. Not only don’t I “look sick”, but I actually looked amazing, for a change. I almost, ALMOST, indulged in a selfie. The first time I took one was about two weeks ago. I sent it to my brother who said “Holy shit! You look so different.” I said “Different bad or different good?” and he said “Good. You look SO GOOD.” My brother never compliments me, so I know it was a genuine reaction. I then sent the same photo to my best friend in Germany and she said I look absolutely beautiful. I suspect cataracts. 😉 For me, it’s a huge issue for others that I “don’t look sick”. My body, however, begs to fucking differ. 😦
But I digress… I have been off of prescription pain medication since 2012. I was the kind of patient who could make fifty Percocet last for two months, or longer, but the majority of my pain medication that I’d refilled each month (because my insurance paid 100% of the cost) was stolen by a family member in late 2012, someone who went through my private things and took thousands of Ultram and about hundred Percocet I had legally obtained for “bad days”, NOT for someone to get high off of. I was enraged when I discovered all of my medicine gone. I legitimately had the ration out what little was leftover for “bad days”. I wanted the person who did it to die; because they couldn’t respect my private space, my private things, or the fact that I am a pain patient that needed that medication to get through every bad day I experience. All of that “back-up medication” was in case I got cut-off from a physician, insurance, proper treatment, etc. Instead, it went to someone who was drug-seeking, and who, to this day, is still apologizing for it because I will never let them forget how evil what they did was.
Four years later and I have exactly two doses of Vicodin left for “bad days”. One pill that I cut in half in order to have two doses. I am in such agony as I sit here typing this that I desperately want one of those doses, but in the back of my mind I know I have roughly nine Aleve in my system. I also know that the pain is so intense, the Vicodin won’t work. 😦 If I had taken it when the pain was still bearable, it would have worked, but it also would have worn off by now. I shouldn’t have to be afraid to seek treatment, but I am. If pain management clinics aren’t doing their job (and there is a long wait to get in, providing you get referred to one.), and rheumatologists are now refusing Fibromyalgia patients and telling them to see neurologists, then where the hell do I go?! Do I pray for a solid PCP and hope they’ll give me Ultram and Flexeril to get through all the “bad days”, or do I hope for more?
My feeling is this: The last three states I’ve lived in royally fucked up my medical history. Each state has, over time, shredded my files instead of turning them over to me, which I feel is every patient’s right, even if we have to pay for the photo copies. My concussion history, which began at a very young age, is non-existent on paper! It makes me look like a liar, and I’d never lie about concussion or post-concussion syndrome, which I still have. There are maybe three doctors who still have files on me, but no one else does, and that means I have to start at square one.
This means going to a PCP here and not saying I have Fibromyalgia. I’ll declare my other health issues, like the migraines, but I am not using the dreaded “F word” with a new doctor until he/she mentions it first. It means letting them run every single test in the book and being officially re-diagnosed. It also means immense stress because I KNOW I’m suffering. I KNOW I’m in pain. I KNOW my blood work does not show any other auto-immune disease, but in the back of my mind I have the “What ifs”. We’ve all had these moments. “What if it’s actually Lyme disease and I’ve gotten false negatives my entire life?!” or “What if it IS Lupus or MS?” Of course, none of those other diagnoses make an ounce of sense; not one. I don’t want to waste my time going to physical therapy (I already know it doesn’t work) or anything nonsensical. This is less about medication and more about the correct treatment methods.
The last neurologist I saw told me Botox for migraines was likely my only remaining option for now, so I need a new neurologist to agree with that and get it approved. I’m okay with needles if it works for me. I’m okay with MRI’s, X-Rays, blood work, etc., so long as I see results in my treatment methods. New MRI’s and X-Rays will show the damage to my spine, which explains much, but who knows what else it will show? I don’t care, so long as it means I am getting the correct treatment.
I have zero faith in the medical community. I’ve been treated here once in an emergency and the Urgent Care staff was amazing, but I had injured my eye and the only thing I was given, despite being in pain for months, was antibiotic gel to put into the eye multiple times per day. I’m still using it, because I don’t believe my eye is fully healed. There are days when it looks SO bad that I worry, and while my vision is not any more impaired than usual, it’s disconcerting. That’s okay though; I need a vision exam ASAP any way. There’s nothing like new glasses and new contact lenses. 🙂 Perhaps I’m the only one who gets excited about such things.
I’m sick and tired of the stress pain patients are put through, and the scrutiny of whether or not we “look sick”. No, I don’t “look sick”. I have seen the faces of other Fibro patients and was absolutely mortified. It made me question so much about myself, and not in a good way.
I have blank cop face most of the time (it helps me avoid wrinkles. Well, that, water, genetics, and SPF 50.), and yes, I wear makeup. I don’t do it for other people; I do it for me. It’s an artistic skill-set that I find enjoyable. It doesn’t mean I’m in less pain than one hundred other people, and I’m not going about to compare and contrast because it is NOT a competition, but when I look in the mirror, I realize why I get treated like my pain isn’t real. My eyes are not dead; they sparkle. My skin is healthy and looks good, with or without makeup, and even my bad hair days are still relatively decent. I don’t look exhausted, even when I am. I consider most of this genetics and the fact that I take really good care of my skin, but it makes me feel even worse to know I don’t “look sick”. Again, it’s not a competition, but I am judged for this harshly.
My body is filled to the brim with pain, but I don’t “look sick”. Would I say that to a cancer patient wearing lipstick? NO. However, unless a person tells you what they suffer from, you just plain don’t know what their battle is in life.
It would be nice to live in a world where we judge less on appearances and took people at their word. Of course, Donald Trump is also running to be President of the United States. Perhaps I’ve landed on the wrong fucking planet! 😦
copyright © 2016 by Lisa Marino & Blackbird Serenity LLC. ALL RIGHTS RESERVED.

First Do No Harm: The DEA Targets Physicians Who Treat Their Patients Pain
This is getting insanely out of hand and it infuriates me. Please sign this petition if you have been treated this way as a pain patient (U.S. only), or even if you haven’t to support the cause.
DEA Banning All Sales Of Kratom
http://www.painnewsnetwork.org/stories/2016/8/30/dea-to-ban-all-sales-of-kratom
If you use Kratom, I suggest stocking up in case this becomes a larger issue. This is just another way that the DEA is trying to harm pain patients and take away our rights. It’s completely unacceptable. This is a non-addictive pain reliever. I know, because I’ve used it. The only side effect I ever had was a headache. I suffer from migraines, a headache is NOTHING by comparison.
Pain Helped Him Pull The Trigger
http://mtpr.org/post/pain-helped-him-pull-trigger#stream/0
This just plain upsets me. Denouncing someone’s pain is a personal trigger for me. Leaving pain patients in a lurch without a referral to a new physician is heinous to me. Until you’ve walked 100 miles in a pain patient’s shoes, do NOT judge their need for medication. I can’t tell you how hard the day and nights are without proper treatment, leave alone without medication.
ER Doctors Lobby To Silence Pain Patients
http://www.painnewsnetwork.org/stories/2016/4/3/er-docs-join-movement-to-silence-pain-patients
Crap like this is going to lead to violence at some point, mark my words. Patients Aren’t Addicts. There’s a fucking difference!
Devoid Of Emotion And All That Jazz
I would apologize for not writing anything of substance over the past few weeks, but I’m not sorry for sparing all of you. I’ve had little I’ve wanted to talk about, not just where writing is concerned, but in my daily life as well. When that occurs, I find it is best to retreat inside myself and wait until things are quieter, calmer, less insane, or I reach some semblance of ‘all of the above’. I do have things I will discuss moving forward, things I’ve psycho-analyzed or things I am in the process of psycho-analyzing, but the day-to-day shit? Absolutely no one wants to hear what goes on inside my head. They’d either drop dead from the speed of my thoughts or run screaming into the great unknown. I know, because I’ve tried to do both. It turns out that, at times, your mind is your own worst enemy.
I have been busy working on my passion project. I rebranded it, as I have been doing it for three years and wanted to make it something special and unique to me. I am now able to see it with new eyes. It is becoming rewarding and refreshing, and I believe that with determination, strength, and fortitude, it will continue to grow into precisely what I’ve envisioned it to be, if not end up in a different direction, far larger than I could ever dream possible. I am trying to devote a lot of my “free time” to this because ultimately, it is a career change and is helping break me out of my comfort zones.
My mother used to say “Do not be afraid to dream big, for the dream precedes the goal.” Inspirational words considering I was pretty young when she said it the first time, but she continued to repeat it whenever I’d lose faith and/or get discouraged. There is NO expiration date on your dreams.

Cat and Kitten are slowly making progress in their new environment. Cat is such a sweet, loving, gentle soul, but she’s generally passive by nature, so I was concerned about how she would integrate. I don’t want her to be bullied or get hurt. She’s not a fighter. She has learned how to jump over obstacles, like the pet gate, in order to get to me and/or explore. She’s been dealing with OGK quite a bit in face-to-face moments. Some of their interactions go well, others do not. He chases her out of the living room most of the time, if he sees her at all. Often times, he sleeps through 99% of her living room antics. She’s stealth, I’ll give her that. It’s hard not to laugh as she darts around corners, looking for my approval before she goes exploring. One night he chased her and cornered her in my room. He hissed like a lunatic, but she stood and watched him. She refused to back down and I was so proud of her. She is coming into her own and showing how strong and brave she is. She has finally gotten to a point where she’s back in my bed, sound asleep, whenever possible, and has gone out of her way to remember her kitten days and crawl into my lap, despite the fact that she no longer fits. I know this normal part of our Mommy/Cat routine is why she has often looked dejected and depressed these past few months. It makes me sad whenever I see her big gold eyes staring at me as if to say “Can I come out now? Why is this gate here? I want to be with you.” I know that in another month or so, there will hopefully no longer be a need for the gate, but for now, I can say it has truly been a God-send.
Kitten took much longer to emerge, and she’s the Alpha of the two, so I decided to physically remove her from her foxholes. I had to pick her up, bring her downstairs, and force her to immerse herself in the new. She fought with me like a toddler as I carried her downstairs, and immediately tried to leave the second I secured her behind the pet gate. She discovered almost instantly that the new gate is easy for her to jump over (I’m pretty sure she could scale a six-foot wall with ease. She’s huge, and taller than most domestic cats.), so I often find her un-corralled, but only when there’s food involved. If she senses OGK; if she sees or smells him and no one is with her to get in his way, she will hop right back over the gate and either watch him or hide. She’s still hissing at him on occasion, but it’s an innocent sound, a “back off” warning that she is giving him for getting too close. What bothers me the most is her visible unhappiness and depression over not being with me 24/7. She’s a Mama’s Girl, and she does not appreciate having her access to me blocked, yet getting her into my room practically required pulling teeth. I am proud to say that she is finally comfortable enough to come downstairs on her own, albeit under my watchful eye. I was coming out of the kitchen one day and she was sitting in the picture window in the living room, staring at me. Unfortunately, in my joy of discovering her out and about with such confidence, I locked OGK in the kitchen and when I went to check on him, the doorknob fell off in my hand. I spent a good 30 minutes trying to re-attach it in order to get him out, feeling terribly stupid. I nearly broke a tweezer and a scissor in my efforts. Thankfully, the handyman is quite handy and was able to fix it in less than a few minutes. He then lapsed into a story about keeping a screwdriver in his bathroom, as the very same thing had happened to him one night, leaving him to try to unlock the door in the dark. It was a little TMI, but he was just trying to make me feel better in a time of great stress.
For roughly the past two and a half weeks, she’s been making it into my room safely, all on her own. She is now comfortable getting into my bed and plopping down beside me for a belly rub and kisses. She’s slowly exploring “our stuff” and is so much happier to spend an hour or two with me as opposed to being solo. So, that’s progress. 😀
I miss them because they’re not with me all of the time. They’re my babies and I love them, but the exhausted, drained, Fibromyalgia part of me is glad that I get some alone time because I spend a lot of time these days feeling physically weak.
As for the Fibromyalgia; essentially it means you are fighting a war inside your body. I need to remind myself that self-care isn’t selfish or wrong. I need to stop being so hard on myself. However, I also NEED to push myself physically and not allow this disease to rob every single day of my life. When I hit the point where I am unable to write, which is usually by 10:00 a.m. most days, I feel terrible amounts of guilt. It’s not that my brain is lacking in ideas, it’s that the pain is overwhelming and when you physically cannot do something, the creative process has to take a break.
I stay in bed when I have to, merely to rest, but I’ve been here for almost four months and I have absolutely no social life to speak of. I do nothing fun. 😦 That’s got to change, ASAP! I’m starting to feel like OGK’s vet’s office is my second home. I am by no means ungrateful or unappreciative, I simply need a reminder that I am young and have a life to live. It’s hard doing that when you spend five days a week talking to cats for 8-10 hours, and harder still when the weekends come and you find yourself sick (my migraines have been brutal), or unable to form complete sentences without sounding like a lunatic.
For anyone who thinks that Fibromyalgia doesn’t affect the brain in some way; you’d be wrong. I am normally sharp, quick-witted, loquacious, intelligent, and direct to the point where it makes people squirm, but lately I cannot handle conversations that require a great deal of thought, and I absolutely cannot deal with stressful shit. I’m already on the high-end of having no patience, but I am currently so frayed at the ends that there’s damn near nothing left. To add insult to injury, I fell in the shower a week and a half ago. I didn’t break anything, but I expected an epic bruise. After all, I fell entirely on my left side from shoulder to knee. Surely that leaves a mark? Either I am extremely slow in the bruising phase or the aches under the skin simply didn’t warrant bruising. Who knows. It took a full week for me to be able to sleep on my left side again, and the fall sent me into a terrible flare-up. Even as I sit here now, I am in a world of pain. In that world, pain laws are changing, and not for the better.
I am disgusted at pain patients being labeled as “drug addicts” simply because many of us require the use of opioid pain medications in order to do the simplest things a healthy person can do, like walk the dog, take a shower, take out the trash, grocery shop, etc. When I was healthy, I walked endless miles in Spring/Summer/Fall day. It never occurred to me not to walk ten miles one way and ten miles back, because I was out and doing things I wanted to do. I was an athlete. My world came crashing to halt as the early stages of Fibromyalgia began surfacing. One after another, these evil things made their way into my life, but it took years before I agreed to take pain medication. I’d worked for professional athletes and experienced firsthand what genuine addiction post-injury is like. Many of them lost their lives before age 40. I refused to go the same route over pain, though my doctors were calling certain things “injuries” and sending me to physical therapy and other useless wastes of time and co-payment money back then. It took research before I demanded to be tested for Lyme Disease and Lupus. I’d been tested for everything else, so I was convinced I had one or the other. When both tests came back negative, my doctor told me the only plausible explanation for every single thing I was experiencing was Fibromyalgia. Perhaps I’d heard the word in passing, but I’d never given it personal credence until that day, where I was unfortunately way too focused on the fact that I did not have Lupus, to ask the questions I should have. I’ll never walk out of a doctor’s office with a diagnosis again and come away with unanswered questions. I don’t care if it’s a challenge to the physician or not, it saves me from agonizing over it online, which isn’t always the best resource for someone newly diagnosed with anything, especially not during a time when the word Fibromyalgia was barely used. I think research is an excellent tool once you’ve gotten a second, third, or even fourth opinion, but don’t let it make you feel powerless as you read other people’s stories.
Pain patients are NOT addicts. I have yet to meet someone who suffers as I do, as many of us do, who did nothing but pop pills all day long. We’ve all looked at alternative forms of treatment, we’ve all tried different things in order to manage our pain, but in the grand scheme of things, we are NOT criminals for needing the medication and no one should ever make you feel as though you are. If you meet a pharmacist that refuses to fill your prescriptions, please contact the main office of whatever pharmacy you use and file a complaint against them. Also, call your state’s pharmacy board and file a formal complaint. You won’t cost him/her their job, but they WILL be sent to continuing education courses before they are allowed to return to work handling controlled substances, and in some instances, that might very well be a crucial move to save others from what you may experience.
I had to do this myself when a portion of a controlled substance I take went missing from the bottle after it had been counted and bagged. I didn’t have time to count them in the store, who does? I was encouraged, in fact, by my cousin who is a pharmacist and deals with pain patients regularly where she works, not to worry that I may have cost the pharmacist her job (she assured me that they rarely get fired for a first time offense), and that I had the right to demand the full pill amount that was not in the bottle. If it had been a pill or two, I wouldn’t have said anything, but it was nearly 60 pills missing (an enormous cut from my monthly script) and the pharmacist implied that “Maybe I’d taken them myself”. She actually said that to me. My response was “In three days?! I would have OD’d if I did something stupid like that, and we wouldn’t be having this conversation, would we?” If she’d said it to my face, she would not currently have one. I was enraged and we’re not even talking about a prescription for pain medicine.
My brother, post major open-heart surgery, was given very small prescriptions for pain medication, despite the fact that breathing, coughing, and moving around too much were excruciating. The pain has only recently stopped, but I assure you that it was not properly managed except when he was in the hospital and that knowledge sickens me. He’d never in his life experienced so much physical agony, but the first thing I was warned about in caring for him post-op was to make sure he wasn’t “becoming addicted”. I nearly laughed looking at the pill count on the prescriptions. You cannot become addicted with 40 pills, nor can you become addicted on 20. Not when it’s your fourth time in your entire life taking prescription pain medication. I looked at the hospital staff like they were all mentally disturbed. I suspect the subject, as it floats all over all forms of media, will continue to produce angry moments and thousands upon thousands of stories. Don’t hesitate to take to the written word if you aren’t treated with respect as a pain patient. But don’t get discouraged if more than one doctor doesn’t treat you as the used to moving forward. Nothing would shock me. 😦
I hope everyone is enjoying Spring and had a wonderful Ostara (or Easter). Passover is later month and while I, personally, don’t celebrate it the way I did when I was younger, I find that this year, I care more about being around family than the holiday itself. Of course, this requires energy I don’t currently possess, but perhaps Patient X will visit. He was released from the hospital on Monday, minus the Life Vest he has worn since being released in November post-surgery. I don’t know if that’s a good or bad thing (no longer wearing the Life Vest), especially since the additional surgeries he was supposed to have/need are currently off the table because he is too young. I do know that if my brother ends up dead because someone was negligent, there will be hell to pay. I might very well call one of his doctors myself and try to get some answers. My brother’s not big on words at the moment. 😦
I’m glad that my current state of insomnia finally produced something worthy of being posted.
Wishing you all a wonderful weekend!
© 2016 by Lisa Marino & Blackbird Serenity LLC. ALL RIGHTS RESERVED.






