Tuesday, May 5, 2015

Dating with RA series Part one

Author's Note-This is a fictional story about the pitfalls of chronic illness and one's love life. All characters and events are from my imagination and inspired by many of the people I've known who are dealing with chronic illness.  There is no title just now, but I'm very open to suggestions.  Posts will be made 2 times a week until its conclusion.  


When I was a wife...

I’m going to do a weird flashback thing here, I’ll start where me and Christopher ended, you’ll catch up I promise.  I think this story only makes sense this way.  I’ll go back and show you things, tell you stories that are happy, sad, important and the things that should have been blaring red flag moments, but we’re all so busy and blind they just collect and become regular memories. 

On a warm May night I lay sprawled on the floor of my apartment, where I’d taken a relatively small tumble thanks in part to a crumbling hip joint that was more dust than functioning ball and socket, staring at a screen that held your number in the very first speed dial position.  I watched the light flick on and off quickly enough to know your phone was off.  There would come a time where truth would fill in where doubt once lived.  But at that time I would lay with my cheek pressed into tear soaked carpet wondering why I couldn’t reach you.  I would curse battery life and lost reception imagining all the places at work where the phone would flash with a no service message.  I would lay there for 3 hours, way past the time you should have been off work, wondering if I should call someone else, or chance getting up onto wrecked knees and arms that were tired of carrying me around while my legs had become worthless.  I’d stayed there in so much pain, growing more and more anxious when you didn’t come home.  Back then I even excused your absence with my first thought, that you had stayed to work overtime because God knows we needed it.  Eventually I worked myself up between the table leg and the wall and excoriatingly slowly made myself upright again.  I half dragged myself to bed, alone at a little past 3 in morning, silently wishing you didn’t have to work as hard as you did.  But sometime in the future, months down the line I would sit in a cold and sterile office lined on all the available wall space with files of failed relationships, where our story would join its ranks and be reduced to bullet points and dollar signs.  Here I would learn where you had fled to escape me that fated evening.  How you’d lived on credit, and spent money we never had.  In days that I counted every precious, painful step, my main event of the day making it from the bed to the couch and back again on borrowed time only with the aid of a walker, small surges of painkillers and vicious stubbornness that illness so rarely got to steal.  Not even a mile from our home, you checked into a hotel known for its transgressions under the name we shared as man and wife with a much younger and healthy woman who saw you only for the knight in shining armor qualities.  Perhaps she loved you even then, when I had known you that way, I had loved you too.  It’s easy to love when you only exist in places where the real world can’t touch.  I was racing to get to a hospital that would free me of my last ruined hip joint hoping desperately to rejoin life and Chris was trying to make this time last as long as possible.  Because in my limited existence, he had started a new life, he had begun living again without me. 

When I imagine the things that went on behind locked doors I don’t always imagine the obvious.  I see how he must have seemed so tired, and so defeated.  How he might have reached out in the beginning just to feel like he mattered in a world that had shifted so violently between us.  Our whole life consisted of doctor’s appointments, overdo medical bills, and delayed disability benefits.  I couldn’t do normal tasks anymore, I couldn’t do much of anything beyond managing pain.  Before I needed my hips replaced I prided myself of the kind of wife I was.  On the home I took care of, the meals I cooked, the trips we went on.  When I wasn’t so sick, I spent so much of my energy helping Chris, spoiling him because I knew what lay ahead.  I thought I could bank time. I thought I would create so many memories between the two of us that I could stoke a fire big enough to burn when I no longer had any ability to do those things.  I know he tried to fix me.  I was there.  I remember the tentative forehead kisses he reserved on difficult days where he wanted to spare me any added pain.  I am fully aware the hospital rooms where he slept on chairs, how he watched me walk again with a sparkle of hope in his eyes.  I know at moments he saw the glimpse of what he wanted for us.  If he could have held onto healthy versions of me, I think he would have been happy. But in this life there were too many valleys, and only long ago peaks that so very rarely dotted our existence.  There is something fundamentally wrong with taking medication and not getting any better.  Not everyone can handle what the word chronic really means.  Chris wanted a reward for all the work we did to keep me healthy and RA just doesn’t work that way.

I know she comforted him, told him many times that it was ok to feel lost.  I imagine how she would whisper to him that he had done more than enough, more than so many others had done.  And there is so much truth there.  SO many times I had said the same through a curtain of tearful regret.  I find it funny that this woman I knew so little about could sing his praises in a twisted harmony with myself. 


I’m not as angry as you’d think that they found their way to each other because he needed exile from our life.  I knew, almost immediately, the appeal that any other woman would bring.  I think, even when ladies like myself have great days or weeks or heaven-sent months of reprieve we still fear the coming of tomorrow’s sun because it is not always a promise of new beginnings sometimes it only brings new horror.  On nights where I could dress up and play the healthy counterpart of his wife and his friends would say nice things about how pretty I was, I didn’t look sick, how they wished they had wives who could cook the way I did, these were moments I wished I could freeze time and live only there.  But in lots of ways RA is so much like the way midnight strikes in Cinderella and all the world comes crashing down around her.  My fairytale fell apart because good days are followed by pain, fatigue and limitation.  Probably worst of all, sometimes it crushes the hard work and hope that you have settled in as a couple.  

Friday, May 1, 2015

MAY 2015!

In honor of Arthritis Awareness Month I will be posting a fictional story about dating and RA, hopefully two times a week for the whole month.  I've worked on this story, in more than one form, over the years and maybe it's time to just put it out there.  Today is just a small introduction, so enjoy and stay tuned!


When dating traditionally begins I was in a clinical, medicated remission discovering the whirlwind of teenage romance relatively unscathed by my disease.  It only highlighted passages of my adventures and misadventures, peaking in and out from time to time but never settling long enough to do serious damage, when things went wrong they were usually just a young girl and a young man finding their footing while you wade into the great big sea of fish out there.  What happens when chronic illness awakens like the dormant dragon it was?  

It slowly but surely uncurled itself and stretched back out within my body claiming all its old haunts and filling itself to the ends of my toes and tips of my fingers.  Then there are times it stretches just a bit further and into the lives of people you love.  Sometimes they will love you still, sometimes that touch is too much for others and because they can, they leave.  Even when you think you’ve done enough to make them stay, even when they make permanent choices to be with you, in the end no one really has to deal with your sickness but you and this is the story of staying, going, and trying to do just fine.  Within this text you’ll find out how illness makes us a threesome.

Wednesday, March 18, 2015

The business end of pain management.

It’s a small, nondescript white pill that is sometimes the only shaky bridge over troubled waters so I have a semblance of a normal day.  Sometimes it is relief that runs through my veins and limbs from a time I pushed too long or too far. Sometimes it’s a precaution, it’s a preventative measure so that maybe the pain will never touch me. A curtain to hide from sharp looks and long slow knowing head shakes.  It’s an invisible cane that helps disguise the ever present step, drag, step I’ve long since perfected.

Sometimes I fight the urge to take it and do my best to conjure up old strength and will and I just can’t get there.  I lie in bed staring down the ice breaker to my day, wondering when dependency got this heavy.  So heavy that without it I stand to let down longtime friends, piss off my significant other and disappoint family that has seen me tackle so much more than everyday pain.  It seems impossible to find the words to describe the inferno that RA is these days.  That it spreads as fast as a match lit and even when I can put out the fire the fatigue that comes after it is sometimes so much worse.  Because how do you tell someone, I made it through the pain but I’m just so tired, too tired?

Tired of justifying my pain, fatigue and my need for assistance.  First to myself, next to a Nurse, a Doctor and finally a pharmacist behind a counter who only understands audits and sees pen to paper not a person with a disease.  Most don’t look up from the counter at all, they focus only on a scribbled date, a lazier than usual Doctor’s signature or the real jackpot, when someone new has stepped in to fill out the prescription and they can raise multiple concerns over filling the one prescription, besides my chemotherapy, that gives noticeable improvement.

When days at the Doctor mean long wait times, lots of tubes of blood, body manipulating x rays, the poke and prod to find the pain exams and then the haul of paperwork over to the pharmacy where I hold my breath each time I walk in because this is perhaps the most uncomfortable part of the day.  It’s a place I have to consciously confront my weaknesses.  I can no longer pretend I don’t need the help, that I can mind over matter my disease.  I have to go here to put into words the fact that, on my own I am not enough.  That as positive as my attitude is I have lost the ability to come through my RA on a some what daily basis.  While I live in a world that has many options to help control my disease, it is still a stupidly strong adversary that has had plenty of time to leave nothing but destruction in its wake. While there were many, many years I counted my worth and strength and wins in how small my orange bottle stash was and just how full I could keep them as the calendar days fell away, that girl seems more of a distant memory than ever.

As I’ve failed one medication cocktail after another, and the dosages go up instead of down and just the word refill hangs heavy with anxiety I wonder why it’s so difficult to get.  Why the red tape of prescription drugs is not mentioned as a side effect yet, I can’t tell you.  For some people who will never live this life, I’m sure I’m the poster child for addiction.  But the difference here is by the time I reach for that prescription bottle I’ve suffered through hours of pain, limitation, and anguish.  Practiced one coping mechanism after another, gone to my mental happy places and back again and still RA and I will do this dance all day and all night and I’ve finally given into the fact that hydrocodone is the only thing willing to support my arms and float along with me on this dance floor, even if it's just a few fleeting minutes or if I'm lucky, hours.  And honestly it’s nice to know that after a decade of seeing the same Doctor he trusts me to know that no matter how bad the pain gets I will take my same dosage just the way it is prescribed and that in the time he can’t see me or protect me, pain medication is what he can do in those difficult moments. We both understand that it is sometimes the only nudge left available to push me back into a version of the world I can participate in.  But even with this much history, understanding and know how between us someone outside of us stands to make decisions about my life and my disease.  An outsider whose knowledge comes from statistics, complete with data not taken from a person like me, will set up fear and misinformation that makes every bump along this journey that much harder to navigate.  So along with pain, limitation, fatigue, and the sometimes companion of depression we can now add frustrating politics to our struggles.   I’m not sure how we got here, but I can say I will do everything in my power to not stay here.  I know that needing a drug is not the same as an addiction, I don’t know that chasing the feeling of health and normalcy is a crime, in fact I’m fully aware of the industry we call “Medicine” and how they've made a business out of it, and if I’m a criminal I’m in quite good company.  

Thursday, January 30, 2014

Victory? Or Defeat?

I received my acceptance letter from disability.

“As of June 2013 you meet all the rules to be eligible for SSI based on being disabled.”

It’s a strange feeling.  I have read and re-read that line 50 some odd times.  I could recite it to you in my sleep.  Part of me, the financially crippled part that watched my savings and credit drain away are terribly relieved.  Part of me was fraying at my seams too close to falling apart.  I can be a poor person, but it was very hard to be an irresponsible person.  To let bills go unpaid, to pay ridiculous late fees, to be at the absolute mercy of Chet and my family. 

Then there is the grown ass woman side.  The tough as nails side. The side that refused to push my pain pump after my second hip replacement because I didn’t want to slip away and miss anything, I didn’t want to deal with the “coming down” part of pains meds, I had too many bad memories from my first surgery.  I held out for so long I nearly gave myself a heart attack.  I almost killed myself to feel in control.  Can you imagine what that part of me feels like?  Part of me will hate me for it forever.  Part of me will always think I failed, that I wasn’t enough….that I let what I have swallow up the person I am.

Printed neatly in the pages of this acceptance letter was another line that said based on my case my health could improve and so I will be reevaluated in 3 years. 

So I tried to think about it, where will I be in 3 years? How much of me will give away my disease from the outside?  How will that woman get around, how many medications will she have tried?  How much more unrecognizable will she be from the woman I am today, who I was 5, 10, 20 years ago?

In 3 years will it go the other way around?  Will I have rested?  Stressed less?  Had the health coverage I needed to rebuild some of the pieces of me that have come crashing down around me?  In 3 years might I be ready to go back to work?  Will my body have finally caught up with this busy brain of mine?

I wish I had as much income as I have questions and worries.  I don’t want to seem ungrateful, I’m grateful for the money I’ll have now.  I am so thankful that I won’t worry that my next run of the mill cold turned walking pneumonia or case of shingles won’t be my last chance at a job that doesn’t understand chronic illness.  I’m thankful that I’ll never have to tell a supervisor I need a reduced schedule.  I’m thankful to be rid of various forms of uncomfortable and borderline prying conversations people who manage you justify asking.  For that part of the working world disability provides a very welcomed escape. 

I already miss having somewhere to be, people who depended on me, looked to me for help, I miss being really good at my job.  I miss watching strangers become guests who remembered me for years.  Guests who only let me handle their vacations, their special occasions, who brought me things on Holidays but mostly I miss the magic that lived in me. 

I miss me.
I miss being cap-able.

Disabled is such a dirty word sometimes.  If words were shackles, disabled and all its suffixes would be some strong ones.  Maybe it's why to this day, no matter how terrible I'm feeling I won't use my handicap placard on purpose.  I'll park as far away as possible and pay for my stubbornness just for the sake of being that stubborn woman, just to feel like I can still access that fire inside me that turned to embers when I wasn't paying attention.

I wanted to write an uplifting post because I know just how hard it is to get on disability.  I know too many people who are turned down when they deserve the help.  But I also want to use this blog to always provide honest reactions.  I’m still an eternal optimist.  It’s engraved in me like an evolution to keep one going in a life like this. 

But in its simplest terms….. I’m still pissed off.  I said it, I pissed off that I’m disabled. 




Sunday, December 22, 2013

Public enemy #1

I yelled at a pepper grinder today.  


Somehow, over night even in the span of a few hours I lost the ability to use my pepper grinder.  My snobby “I only use fresh ground pepper” self bought that for me, something I don’t normally do.  I buy out of necessity and sometimes not even then.  I had splurged for this.  Walked by more than one talking myself out of reasons to spend money on it and one day I just bought one.  Yesterday I was fine, it worked just fine but through the magic that is this disease I found myself unable to make my hands do what I wanted them to do.  Worse than that, the after effects of said effort is protests of pain and swelling and general discomfort.

I should tell you that I learned something today.  That my supportive boyfriend will grind all the pepper I need from now or that I have any number of people that I could call for their perfect pepper grinding skills but that isn’t what happened.  He offered to help and I didn’t want to hand off another limitation.  I wasn’t ready to be ok with needing his help for one more thing.  I wasn’t ok.  So I let myself be pissed off.  All. Day. Long.  I contemplated what I could do to that pepper grinder, how much I hated it, I almost went out to buy some ridiculously expensive mechanical version that will undoubtedly break sooner than I’d like it to considering its price tag.  I should tell you that the pepper grinder taught me some lesson about accepting my disease.  It didn’t.  It just made me angry. I’m still angry.  But for the first time in a long time I stopped talking about the silver lining, shiny version of tomorrow and I let myself feel scared, bad, and angry. 

I don’t do this enough. I bottle up what I feel, I talk myself into thinking things are the way they are for a reason and I’m a better person for the all the things that go wrong and missing.  I am that person, but it’s ok to wish I wasn’t every now and then and I think it’s important that I grieve the loss a little.  It’s like we had a break up, me and this pepper grinder. 


And so I cried.  And cried, ate some cookies and cried some more. In the midst of these ugly tears and ridiculous sniffling I had a realization.  It’s just change.  Not good or bad just different. Me and change we have this volatile relationship, the very definition of a roller coaster but at least it’s in motion.  What if everything in my life just stopped moving all together?  What if the power went out?  How awful would it feel to not feel at all?  There’s a lot of therapy in change and tears and resolve.  Maybe I’ll just have both.  Some fancy grinder and the one I’m not on speaking terms with at the moment….bad days come crashing down on you but on the flip side is you never know when you’ll have a good day, a good day to do some grinding.



Friday, May 31, 2013

The Pieces of Me


It’s easy to label yourself many things when you have a chronic illness.  Ill, disabled, lazy, tired, or just plain sick.  I’ve called myself many of these.  When you can take failure to its cellular level and count your immune system something that would be rejected at quality control, it’s frustrating.  When I’m trying to be funny I compare my RA to that cute kid that learns to play baseball and continuously runs to third base instead of first, or scores soccer goals for the opposite team.  My autoimmune disease runs on overdrive daily and its favorite pastime is attacking the healthy parts of me.  It sounds awful and sometimes it just is. 

I’ve had a hard time lately thinking about how my life feels like it’s literally on hold while I wait to completely resolve my shoulder injury and finally be able to get regular meds back in my body. I’ve been battling pretty major fatigue with a side of pain. My body has actually stood up well to the test of not having the meds I know I need but I think after 2 years of this schedule it’s kind of upset with me.  But trust me when I say I’m upset with my shoulder and all the circumstances it has brought with it. 

As time goes on, while you’re on pause, it starts to feel like everyone around you is having these ridiculously fulfilling lives.  My friends have brought beautiful babies into the world, some have gotten married and some are getting ready to graduate.  I’m so happy for all of them and while more often than not all of these events lend a bit of comfort and entertainment(a form of sunshine in dark days) to me, it also provides the inevitable.   Even the most positive person starts to reflect on their own life.  These times when I really feel like a decoration among people who are truly living, it’s hard not to feel like you’re missing out. 

But today I was walking around my apartment and I quite literally stumbled into the side of my refrigerator.  It was a reminder from wherever that sometimes you have to remember what you do have. 

I think this is what I always pictured being a Mom to be like:
a fridge full of CJ related things


When I got divorced I remember feeling like a true failure, I felt betrayed in a weird way.  I was hurt but I was also mad at him for destroying the picture I’d tried to paint for the kids I mentored.  I wanted so badly to show kids growing up with Autoimmune diseases that things could be normal; that they could go to school, get a job they liked and even find someone who saw past what they had to who they were.  I was devastated when he took that away from me.  I thought I’d never get it back. 

Then I met Chet and he brought with him the most amazing little boy.  Suddenly I had double the amount of love and acceptance I had before.  Besides that, they had brought into my life an opportunity, one I had nearly convinced myself would never happen for me.  I became a StepMother.  As I look around my apartment after CJ just spent the long weekend with us I started to see all the pieces he leaves behind that I let myself walk by for a week or so.  I’m not being lazy, I know I do it on purpose.  These are my pieces of Motherhood. 
CJ's koolaid drinks located conveniently next to the 
ketchup, such a CJ move

His favorite raisin bread I only justify spending 4 dollars 
on cuz he loves it!  And "all Katie's healthy stuff" as CJ would say. 
 Our snack boxes look pretty different! haha

His unmade bed.  When's he here we make it everyday 
except his last day, better things to do that day for sure!

Xbox things, he is his Father's child.

Shaped mac n cheese, I have been schooled on just how 
different they taste from the original, they are much better 
as shapes.  I love him.


I don’t get to do this full time but the times we do have together are like medicine for your soul.  Time full of learning and growing, laughing and love. CJ is sensitive and full of empathy like his Dad and his Grammy and its these traits that lend themselves pretty well to a less than perfect StepMom.  He’s patient, kind and considerate.  He’s always concerned and caring and quite the little helper these days.  I'm always critical of the things I can and can't do and I get angry at myself the most if I feel like my illness makes him miss out on anything, but in the end he's always thankful and proclaims each trip "the best time ever!", so who knows maybe I'm too hard on myself.  He’s the greatest kid who was probably made for me.  We’re kind of like this patchwork quilt that came together in my life.  Beautiful pieces that make me feel whole again. 

So while it’s harder to have these breakthroughs in your most trying times, I guarantee you that everyone has these pieces of themselves, their lives, their goals, something to hold on to til you can get it back.  Enjoy them, I know I do.

Monday, May 13, 2013

Retrain Your Brain Week!


So I spent 2 weeks working really hard on my new way of eating.  I did really well.  I successfully cut out gluten, dairy and most red meat too.   For 2 weeks I felt pretty damn excellent, especially considering I am late on my Rituxan Infusion while I wait on county medical insurance.  For 2 weeks I did some very easy workouts in the morning and 20 mins of cardio at night.  I think I gave myself 1 day off in all of that because I felt the twinge of a flare.  I was pretty happy with the changes too.  I was taking less pain meds, moving better, less swollen and I finally saw the return of the muscles in my legs(I haven’t seen those in over a year). 

Then my Birthday came.  I had a busy week leading up to it so I made excuses to not eat the things I knew I should have been eating, I had fast food and soda again for the first time in over 2 weeks.  I started to notice the tired feeling I couldn’t shake, the swelling in my hands, knees and feet came back AND after two nights of Birthday dinners and alcohol, which I almost never drink, I felt like I’d been run over.  

Now is this all due to letting my eating habits slide?  I don’t know, but I do know that in 2 weeks I gained muscle and lost weight but in 1 week I gained all the weight back….grrrrr.

SO NO MORE MESSING AROUND!!!!

I don’t have a lot of control when it comes to my disease, I’m at the mercy of medication and Doctor’s orders but if the way I eat makes even the slightest difference than that is still something and I WANT to have that control.

Enough of all this talk, I like visuals, don’t you?

 

I made the produce section at Sprouts my B***h!!!  I totally did.  They also had amazing sales so I didn’t break my bank.  I’ve learned that I need to give myself options to succeed in this new eating adventure.  Without variety I get bored and when I get bored I crave all the bad things. 

Here are a few tips I use. 

ALWAYS PREP YOUR PRODUCE. 



Veggies and fruits are wonderful but if they aren’t easily accessible when you’re hungry you will find a reason to eat something else.  It took me about 20 minutes, even with my bum shoulder, to prep all of these options.  Some are salads, some are snack packs, some are for steaming and stir frying….remember when I said that thing about variety?  It comes in handy here too.  This is a lesson in convenience and portability.  You have to have snacks you can take with you. 

SEE-FOOD



Nope, not the fish, although that is good too.  This is about keeping good snacks in your eye line.  Make sure the great choices are never out of sight, out of mind. I keep my blender and fiber powder on my counter at all times so I remember to make smoothies every morning.  I put my fruit into a clear glass bowl so I can see what I have to choose from at all times.  I also keep these whole grain-heart healthy oat snack squares out and about too, or in my purse.  Good options friends, I highly recommend. 


SET YOURSELF UP FOR SUCCESS




You will, at some point in this journey, truly believe you can eat brown rice and vegetables with every meal…..and you would be WRONG.  Your palette will tire of that real quickly.  One cannot survive on brown rice alone, plus there are sooooooo many delicious choices when it comes to grains.  Quinoa and couscous are obviously some of my favorites!


TRICK YOUR BRAIN, NOT YOUR WAIST LINE



 Avoid the need to cheat.  You really are only hurting yourself.  Find fun ways to make room for your favorite things in life.  There are ways to do this.  They have brown rice chips, pancakes made with egg whites and oats that taste like amazing French toast and my personal favorite, almond milk ice cream.   Yeah I’ll take that.  PS…..it’s freakin delicious.  But just like a lot of things in life, even these healthier choices should be eaten in moderation. 


I guess my number 1 tip is to just stick with it.  It is hard work, harder when you can eat cheese fries and pizza any day of the week for a lot cheaper than this life but it’s called fast food for a reason, it’s making your quality of life disappear just as fast.  Sad but true.  I’m 29 now, time to actually think about what I’m putting into this body of mine.