When My Daughter Is Blamed for Her Chronic Pain

http://themighty.com/2016/04/amplified-musculoskeletal-pain-syndrome-doctors-treat-childrens-pain-differently

This article infuriated me. I know how I was treated as a child with pain and it wasn’t very different, but I feel like the practices have become worse as an adult with pain, not better. You have to fight for everything, and that is unacceptable to me, but for anyone to denounce the pain of a child just plain rattles my cage!

 

Devoid Of Emotion And All That Jazz

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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.

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In case you were wondering, this is how Kitten rolls in hotels. She jumps from the floor to sit on top of the refrigerator. See the defiant little face? #JustLikeMama

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.

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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.

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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. 😦

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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!

lisa1

© 2016 by Lisa Marino & Blackbird Serenity LLC. ALL RIGHTS RESERVED.

Shutting Down

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In more ways than one.

I’ve had roughly six pain-free hours in the past two weeks, so bear with me. I could never say “I hurt.” enough. 😦 That’s not even the appropriate terminology for what I’ve been experiencing, and I hate it.

Pain isn’t always physical. For me, it often is, but sometimes pain is also emotional. I don’t care who you are; we’ve all been there. Whether we care to admit it or not, it is a fact of life, in varying degrees. No one lives a supremely happy existence 24/7. If they do, they aren’t human.

I hate making plans for a day, or even two consecutive days, and not being able to do much of anything, save washing my face, brushing my teeth, caring for Cat, Kitten, and OGK, and doing simple things, like a load of laundry, or cooking a meal. I know for some people, the thought of cooking a meal as a Fibro/Chronic Pain patient means “heavy duty work” (and it’s something so many of you have told me you no longer do, for various reasons.), but for me, it truly is simple nine times out of ten. If it were too much for me, I wouldn’t do it. If I couldn’t do my laundry, it would simply pile up. There are days when I just want to walk out of the house and not come back. Far more than I care to admit. The past few months, I have felt that way a lot. More than a lot. It’s been a daily struggle.

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It’s unbelievably lonely living in a state where you only know three people, where you’re almost completely isolated, where the TV and your laptop (and the cats) are your best friends. It’s not just lonely, it’s sickening and pathetic. But here are the facts: I am not a joiner. I do not talk to strangers simply to “connect” with new people. That’s not me. I am not a small talk kind of chick. I will not discuss nonsense with anyone simply to have something to run my mouth about. You’d think some people would appreciate that level of depth, but instead, people simply see it as me being unpleasant, a bitch, or any number of other things that aren’t true. Ultimately, the truth of the matter is, I am too honest. I lost my filter many moons ago, so if you ask me a direct question, you may or may not like the answer, but that’s not really my problem.

I make an exerted effort to pull back on my temper and be supremely polite and engaging, but if a situation really doesn’t involve me and there’s nothing for me to say, I will quietly observe. The last time I checked, this was not a crime.

I’m hurting, and no one sees it. No one cares enough to do so.

I want to sit, eat chocolate, and cry until I cannot see. Perhaps I have not received the support I need because this is the first time I’m voicing the distress I feel, but come on?! How blind is everyone?! Things are so bad in my life at this moment, I have no idea how to pull myself out of the mess that it is, and yet, all the outside world is going to see is the girl with the makeup on who forges ahead. I could be bleeding out of my eyeballs, but no one would notice that, not unless it started spraying everywhere which, I agree, is completely unsanitary, despite the fact that I am free of blood borne diseases.

My attention span is so poor that it has taken me several months to finish a book I would normally read in a few hours. I cannot watch an hour of TV in one sitting, because my mind wanders and then I have to rewind it back to where I was initially paying attention. And yet, I somehow managed to sit through one of the worst movies EVER (I’ll tell you which one if you ask nicely.) in two sittings, desperately waiting for the fucking plot. Guess what? There wasn’t one, it was absolute garbage. I’d like to get that two hours of my life back, along with three hours from a few years ago that I had to spend dealing with a family member’s meshugas. I’ve since stricken this person out of my life much the same way Ramses tried to strike Moses out of The Ten Commandments (If you haven’t seen this movie, shame on you.).

Too often people refer to their autoimmune diseases and mention how it deeply affects their brain function. They are 100% correct in that it does affect our thought process, among many other things. There are moments when I feel like someone has erased huge chunks from my mind, yet I can recall other things with perfect clarity, to the point where it’s terrifyingly eerie. So, call it “Brain Fog” or “Fibro Fog”, but whatever it is, I definitely feel it more often than not. Last night, at dinner, I momentarily tried to figure out where the piece of bread came from on my plate. I’d been eating not ten seconds before, but I drew an absolute blank staring at this small piece of bread, one of my absolute faves, because I couldn’t recall it being there. I catch myself mentally checking out, shutting down when I shouldn’t, and it’s a miserable feeling. Don’t ask me what I did this week because, unless I wrote it down, I haven’t the foggiest fucking clue! 😦

Before I forget, I want to discuss someone being attacked for suffering from Lyme Disease. I absolutely HATE IT when hundreds of people come out of the woodwork and accuse a fellow sufferer of an invisible illness of faking it “for attention”. As if! Yes, there are people who DO fake all kinds of illnesses, but this person is someone with integrity. She’s not creative enough to make this shit up, and she so desperately wants her old life back that there’s no way in hell she’d put herself through a “fake illness”. It’s not gaining her anything, being sick, so for people to think that and make their accusations public pisses me off.

Lyme Disease is a complicated son of a bitch. It can happen to ANY of us at ANY given time, so only the ignorant are the ones wasting time judging. Lyme can lie dormant for YEARS and is one of the largest, growing epidemics in the world. If caught early, you can be treated with antibiotics and go about your life, but if the disease has been in your system for 10+ years, it is going to take its toll. Most people have no reason to be tested for it, but I’ve been tested for it on a regular basis since I was eight. So, I know precisely what I am talking about.

Instead of allowing fellow autoimmune sufferers to be bashed, we should be banding together in support of those who hurt the way we do. Being a good person means doing a little research sometimes. Being a good friend means you do the research when your friend is suffering, and by no means do you allow others to denounce their pain and suffering. We all know that our symptoms can be co-morbid with other illnesses, it’s a fact, but the next time I hear someone disrespecting a fellow sufferer to the extent that this person has been attacked, I will seriously open up a can of whoop ass on those doing it Steve Austin stole that line from me back in the day, not the other way around. 😉

Now that that’s off my chest, the weekend is here, it’s freezing, there’s a little snow on the ground, and yet, it will be 70 degrees on Wednesday. I kid you not. I am already taking allergy meds, so I suspect this Spring might very well be the death of me, and really, I was hoping to just drown myself today around noon. 😦

Patient X was scheduled to undergo another procedure, but it has since been postponed indefinitely. Hopefully I will get to see him for Passover, if not sooner. I’m sending out prayers in advance to my best friend’s father, who is scheduled for heart surgery in a few weeks. Scary, scary shit. 😦

I am off to do wild and crazy things, like contemplate sleep (or watch the rest of The Originals, you’ll never know which! LOL.) and/or hunt down a cupcake.

Be good to one another. Until next time,

L

© 2016 by Lisa Marino & Blackbird Serenity LLC. ALL RIGHTS RESERVED.

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