More than a Diagnosis Code – Nonfiction

By Suzanne Bair

338.2 Chronic Pain

Is never having a day without some level of pain. Even “pain free” days are not free of pain.  Those days are masked by painkillers with the pain hiding underneath, waiting for the nagging reminder that in order to stay on top of it, more medication needs to be taken. It is amazing how with that much painkiller, you can still feel a headache or when you bang your knee on something because your legs aren’t working the way they should due to the nerves firing on overload.

Chronic Pain is never knowing how to gauge your day, plan your week, or plan your future.  There are periods of high functionality, of ones where nothing gets done, and everything in between. It’s having pain anywhere from the stubbing your toe, an obnoxious kind of pain, to worse than childbirth pains – pain without the drugs! It’s being overly cautious and not doing things for fear of aggravating the pain or overdoing it on a good day because you have been denied certain activities too long, or you just want to play catch up or pre-plan for the next flare. It’s a constant negotiation and comparison to pain you’ve previously had and pain you are afraid to have in the future. It’s realizing that on the pain scale the 10 bar keeps being renegotiated as you learn there is worse pain than you have felt before. It’s looking at options you wouldn’t otherwise consider just to make it stop. It’s having two distinct lives; one before the pain began and the one you live now.

It’s scootching in a chair like an impatient kindergartener because you have been sitting too long or you can’t find a comfortable place to sit; it’s like sitting on a chair with tacks. It’s playing the sit down, stand up, sit down, stand up, take a walk, sit down, stand up, sit down, stand up game all day because you have work to do, but there isn’t a better position to be in no matter how many times you’ve changed positions. It’s looking at the clock every few seconds, knowing that each time you actually look at the clock, somehow you have the power not to speed up the clock, but slow

            it

                        down

exponentially

when you desperately need a break.

It’s having a hair trigger temper. It’s losing friends. It’s unsteady, under or unemployment. It’s not being the self you want to be. It’s renegotiating life; one day, one hour, and sometimes one minute at a time.  

Prescription:  Take a Pill

729.1 Fibromyalgia

Is hurting without seeming to have a rhyme or reason to it.  It’s days when it feels like your hair hurts to brush it. Not your scalp, not your head – your hair. It’s telling the kids “please don’t touch me” and watching their small little faces fall because they don’t understand that they did nothing wrong. It’s feeling like you’ve gotten shocked by an electrical socket and every nerve ending is vibrating with almost an audible buzz. It’s not being able to negotiate pressure sensitivity, how tight you screw on a cap to a bottle, not being able to open a door handle, every physical touch to your body feels like an elephant’s weight zeroing in on a pinpoint location instead of the seemingly insignificant mouse weight it really is. It’s cloudy vision causing your distraction and outlet of reading to be taken away as well. It’s spending three hours in a bathtub throughout the day, trying to find some relief because nothing else is working. It’s periods of remission that offer sweet relief and periods of building anxiety because you can feel it progressing. It’s years of negotiating with doctors whether it is a recognized disorder, whether it’s a mental or physical one, and simply not caring, but wanting it treated or better yet… to go away.

Prescription:  Take a Pill

780.71 Chronic Fatigue

Is not sleeping for more than two or three hours at a time. It’s being cranky and drinking too much coffee that makes your stomach upset and makes you shit or run to the bathroom every 10 minutes because your coffee rental is up. It’s nap time, but there is no nap, and then it feels like that’s all you ever really do. It’s not remembering the last dream you had. It’s trying to pay attention, but not being able to focus and things being a little fuzzy around the edges. And sometimes… it’s just being a bitch.

Prescription:  Take a Pill

309.0 Situational Depression

Is realizing that there are specific reasons for having a depressed mood. It’s hours of counseling and finally accepting that if one more pill can help, what the hell is the difference? It’s times where you thank God for the good things you have in your life even though you don’t believe in God because otherwise…

It’s a glass of wine or margarita with a friend, having a good long cry, or the occasional cosmic meltdown as a means of releasing the pressure valve. It’s a weight that pulls you down that sometimes has no words to explain, that sometimes is fleeting and other times makes itself at home until you figure out how to dislodge your unwanted houseguest.  

Prescription:  Take a Pill

300.0 Situational Anxiety

It’s an asthma attack that isn’t an asthma attack; forgetting how to breathe -both hyperventilating and not being able to make yourself take a breath, and holding the last one for way too long.  It’s a Fibro flare that isn’t a fibro flare; every nerve ending on fire, every sensory perception working on double time. It’s feeling out of control. Sometimes, it’s like an out of body displacement, it feels so removed and other times it is so so present – it simply overwhelms you. And then you are left shaking and limp when it is over; tired, wiped out, and completely spent.

Prescription:  Take a Pill

729.91 Arthritis

Is the audible grinding and popping of bone on bone with movement that causes pain and swelling, that causes more pain, and more swelling – that causes nerves to get pinched that causes more pain, and more swelling, and more swelling, and more pain. It’s not being able to hold a pencil or bend your fingers on the keyboard to write, to button a button on clothing, to bend to put on shoes or pull pants up, to raise your arms above your head to tie your hair back out of your face, hold a makeup brush to apply makeup, to hold your coffee cup, open a damn door knob or twist a key in a lock. It’s wearing clothing for function, not style. It’s stiffness and sensitivity to cold. It’s being your own weather gauge. It’s avoiding camping with the kids, it’s not bowling or horseback riding, it’s not kicking your sister’s butt at a game of pool, it’s hating the stairs with a flaming-purple-passion. It’s being OLD before you’re old.

Prescription:  Take a Pill

724.6 Sacrum Disorder- Sacroiliac Dysfunction

It’s having your hip go out like a little old woman without the option of hip surgery. It’s not only having your hip go out on occasion, but having it go in and out of socket multiple times per day, to the point of shortening or lengthening your right leg up to an inch or more. It’s having to get in and out of the car with both feet, avoiding the stairs because going down them can make your hip drop and going up can push it into the nerve root and jam it into the socket. It’s walking a little lopsided, occasionally dragging your foot, tripping, or being unusually clumsy. It’s not wearing those high heeled shoes and opting for flats out of necessity. It’s not walking over things, but around them.

Prescription:  Take a Pill

356.8 Other Unspecified Peripheral Neuropathy

It usually starts as a buzzing feeling in the leg; that kind of hit your not-so-funny-bone kind of feeling that progresses. As it gets worse, you get the sharp stabbing feeling in the back of your thigh that all focuses into a point about the size of a silver dollar. From there, you get a pain that radiates down the back of your knee and progresses down your leg. By this time, you have already realized where this is going and begin to panic because you know what happens next; it travels down into your foot and that pain becomes a numbness that leaves you unable to feel anything but pain. It wouldn’t be so bad if it was your left leg, you always tell yourself – that way you would be able to drive. In your right leg, you can’t feel the pressure you put on the gas or brake pedal, making it impossible to drive. But then again, you know you shouldn’t be driving when you can hardly walk with your knee going out from under you, not knowing how much pressure you put down with each step you take that causes your ankle to twist, if you’re lucky.

Prescription:  Take a Pill

01.0 Unspecified Diagnosis – Human: Person: Mother: Daughter: Sister: Friend: Lover: Teacher: Student: Volunteer: Employee

How do I explain to someone what my condition is when one bleeds into the next, it doesn’t match the explanations in the medical books, and I am more than a diagnosis code? How do I answer the question, “Are you depressed because you hurt, or do you hurt because you are depressed?” How do I explain to a new lover- wait hold that thought while I go vomit and take pain medication because this pleasurable thing, well, sometimes it’s not so pleasurable? How do I explain to my kids how one day I can do something, but the next I can’t and not have them think it’s their fault? How to I keep friends when they know I are completely unpredictable? And how to do I find the words to answer, “How are you doing?” when sometimes there are no words, sometimes you forget the words, and sometimes I just want to answer with the word, “FINE”?

Prescription:  ———


 

Suzanne Bair lives in the Pacific Northwest with her two sons and is a Graduate student at Western Connecticut State University pursing her MFA in Creative & Professional Writing. She is currently working on a travel book and companion website for people with disabilities. Her previously published work can be seen in Bellingham Alive!North Sound Life, and North End Metro magazines. Visit her at www.aworldwithoutlimits.net or www.perceptions.us.

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samidan19 View All →

Sami Jankins holds an MFA in Screenwriting from UC-Riverside at Palm Desert and is the founder of The Tiny Tim Literary Review. Previously she was a dating advice columnist for The Good Men Project’s column - Dating in the Digital Age with Sami Jankins as well as the press and social media editor for The Coachella Review. She wrote a blog for a number of years called Chronicles of Cheerful Clotter for HemAware Magazine, where she detailed her life with chronic health conditions. Sami is also an associate producer and press manager for the documentary Invisible: The Film, which focuses on individuals living with chronic pain and invisible illness. She has served on the Board of Directors for the National Hemophilia Foundation, spent time as a Senatorial intern, and was Miss Wisconsin for the ANTSO program. In addition, she has had articles published in Chronicality, Elephant Journal, The Glow (Australia), I.G. Living Magazine, The Manifest-Station, The Mighty, National Pain Report, Ravishly, and YourTango. Her interests include ukuleles and sloths. Find her @SamiDan19.

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