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.  


Wednesday, March 13, 2013

Honesty


I like less than amazing TV shows.  I especially like shows that include musical numbers.  Lyrics pull at your soul like strings on a harp plucking out things that are both beautiful and sad. This is not my confession.  This is how my confession came to be. 

I pride myself on educating people.  I enjoy mentoring people and supporting people like me.  Honesty is key when doing these things.  I’m fully aware that people look to me, ask my advice, call me inspirational and I wouldn’t feel right about those accolades if I didn’t come clean. 


Truth time- Sometimes things aren’t so perfect in my life.  Despite my disease, because of my disease how ever you’d like to preface it, I make many mistakes. Sometimes those mistakes affect the people I love most. 

I'm not scared to tell the truth
I've been to hell and back and I went with you
Remind me what we were before
When we said, "You are mine and I am yours"

Relationships are hard work for normal couples.  Healthy couples get together, break up, get married and get divorced all the time. I have spent a lot of time lately being thankful for my relationship, thankful for the supportive man that I have in my life. 

I say, whenever possible, that it took us work to get here.  The kind of work where you fall asleep crying, end up yelling and screaming, and even walk away from each other.  We’re not perfect, in fact Chet and I may be two of the most imperfect people to ever walk the Earth. We’re so alike in so many ways we can argue about who's right even if we both have the same conclusion to get to.  Life has taught us to be stubborn, unyielding, and brave to a fault.  While these can be positive traits, you’re not supposed to use them against each other.  Beyond our faults you can add on a physically taxing job for Chet and a physically taxing disease for Katie, on some days it’s a wonder we’re up and walking at the end of the day.  Top this all off with the fact that dating when you’re in your late twenties both products of a divorce has left you quite literally damaged from the word go.


I don't know much but I know myself
And I don't wanna love anybody else
So let's break the spell and lift the curse
Remember when we fell for each other, head first


Chronic illness is quite the burden, best carried by more than one person.  As a patient we’re pretty comfortable hiding.  We’re great at deception.  We’re even better at it when telling the truth might affect someone we care about.  I can admit now that for personal reasons from my previous marriage I built a wall to keep Chet out of the world where I was really sick for a long time. I kept him out for so long in fact it was hard to communicate just how bad things could get.  I chipped away at the wall giving glimpses of what RA was really like and he researched things and went to Doctor’s appointments, but it wasn’t until hiding became impossible that sick Katie came flooding into our relationship like a dam broke.  All at once we were dealing with something I hadn’t prepared us for.  RA will test who you are just as much as your partner.  It will steal things you were great at, take away that smile he fell in love with, and take you to financial ruin very quickly.  Emotions can justifiably run high when one thing goes wrong in a relationship, but when hardship becomes a juggling act you’re going to be tested and your brain will start playing tricks on you.  RA affects the decisions you make on an everyday basis.  Sometimes long term decisions are unspeakably difficult.  It’s hard to be strong, positive and level headed all the time.  You will undoubtedly get to a point where it’s easy to fall into a dark place where you believe the worst with every cell in your body.  Every Doctor’s warning, every website description, every possible diagnosis swirls around in your brain making it impossible to see past the fog of negativity.  All those times you beat your disease, every time your body surprised you, when you proved a specialist wrong, and you challenged the statistics….all these wonderful things get crowded out for irrational thoughts and leave room for things to seem more dire than they actually are. Have I ever exaggerated my disease?  Publicly, no.  Personally, probably.  That’s not to say I didn’t truly believe things to be as serious as they were right in that moment.  However retrospect teaches us so very much.  Looking back now I can realize where I flew off the handle.  I demanded things of Chet that were unfair.  I presented the harshest of realities to manipulate the outcome I wanted.  Not everyday, but on very serious issues. 

Look at this heart-shaped wreckage
What have we done?
We have got scars from battles
Nobody won

We can start over, better
Both of us know
If we just let the broken pieces
Let the broken pieces go

It was these issues that drove me away from a man I loved.  I loved him in a way I couldn’t fully comprehend.  I won’t quote clich├ęs but I will tell you that we had that something people look for.  The man could give me chills from across a room years after we met, we could fall asleep in each other arms, he knew me better than I knew myself in some respects, and he could tell when my analysis of how I was feeling was more courtesy than reality. 

I can't find you in the dark
Will we get back to who we are?

We ended our relationship because I was convinced that the future he saw for us couldn’t be accomplished with someone like me.  I tried many times to force his hand and side with me.  I asked him to be ready for steps we didn’t need to take.  I didn’t do this just to do it.  I felt the clock ticking on my body every beat of my heart and it had me running scared ready to throw away something I did have for something that didn’t(and might not ever) exist or work for us. 

And I can't fix this on my own
Our love is still the best thing I've ever known

It’s been my experience that men are deep rooted in reality, logic and facts.  Us ladies, including myself, can live in an idea, a notion, or an alternative reality and hold onto it like it’s the inevitable that positive thinking and sheer will can bring our visions to fruition.  It’s not like it doesn’t ever happen but our odds living in the world today and dating when you’re divorced carrying enough emotional baggage you can no longer claim it as a carry on, that are formidable opponents.  It took losing what we had for me to see things clearly again.  That and good ole professional therapy. 

Look at this heart-shaped wreckage
What have we done?
We have got scars from battles
Nobody won
We can start over, better
Both of us know
If we just let the broken pieces
Let the broken pieces go

We are still a work in progress.  And those things I fought so hard for, the things I walked away for…I try not to think about.  I realized while I sat at my parents house missing him for ridiculous reasons like not having him around to congratulate me for getting dressed without help, that we might have what I’ve been searching for even if it didn’t look exactly like I thought it would.  It still takes work to live label less, to not put time constraints on when we’ll try for another baby, or when I’ll agree to stop working a real job and rest but in the moments that count we’re really happy and it really works.  We don’t agree all the time.  We both have ideas for where we’ll be five, ten years from now but for the first time in our relationship we know that no matter what path we’re on, we’re on it together.

Just hold on to each other tonight





This confession was brought to you by:
http://www.youtube.com/watch?v=UfJugzpJScc shoulder pain and 3am cuz that's when I wrote it.

Inspiration on Tuesday night television, who knew?

Wednesday, February 6, 2013

The Long Winter


I’ve been sitting in a haze of emotional snow these last few months.  I’m just here in sprawling expanses of white snow that get higher and higher as the days go by.  With a laundry list of aliments, staring at what choices I’ve lost, what certainties have presented themselves it’s been easy to just sit, sulk, dwell.  I’m not good at bad days.  I like sunny days, light breezes. 

I’ve never in my life been fired before.  In fact I’ve always been that, “How does she do it girl?” I’ve been fighting to not join the statistics as long as I’ve been allowed to work.  After over a year of not having the resources, money or insurance I’ve been forced to neglect my body and disease in a way that can’t be denied.  There is no amount of positive thinking that will change the very permanent changes happening.  I’ve started to regret my decision to challenge and fight my shoulder injury.  I know my body.  I know what it was capable of and I know what my job did to it.  I’ve let my disease take the wrap for so many things I thought it was time to finally stick up for it. My RA has done the lion’s share of damage to my frame, it however did not make it nearly impossible to move my right(and dominate) arm.  I’ve been fighting since 2011 to prove that people with disabilities are not a liability.  This fight has gone on so long and I’ve watched my reality change drastically.  Tomorrow I start my actual lawyer to lawyer fight with them because sometimes you just can’t do it alone.  It’s been so long since I felt like myself that I’m not even sure what winning means to me, but when I woke up this morning I realized yet again that this is probably not just my fight I’m doing this for the people that will come after me. 

With no income and the very real possibility that permanent disability is in my very near future I’ve come to depend on Chet so much more.  Yesterday, when I came home from visiting my family I found him fast asleep in bed by 9:30pm.  He’d worked yet another 10 hour shift and I’d received a text message earlier that day that he’d be working through the night on Friday and Saturday.  He’s paid my bills and our bills throughout January and where he couldn’t my Mother stepped in and paid what she could simply saying ,“no worries”.  Just like when I was a kid all the hard things she kept from me, the stresses she wouldn’t let touch me, she was doing it again and I’d found yet another person in Chet to do the same. He’s taken on side jobs fixing lights and breakers and anything in between to get us by until we know more about me.  No amount of dishes done, laundry folded or hot meals on the table will add up to what he’s accomplished and for the first time ever in my adult life in a relationship I looked down and saw my partner.  When you have nothing but time on your hands it’s so easy to count the things that have gone wrong, I forgot to look at what has stayed constant.  The friends that check in on me, the second family Chet has brought into my life with yet another caring and doting Mother, siblings that encourage me to ask for their help, little CJ who says wonderful things about how strong and beautiful I am.  Then there are the opportunities that come along, the children whose future I will help mold with the work that I can still do.  It was Chet who told me, “There are things you can’t do Katie, but there’s so much more ONLY you can do.”    For the first time ever I didn’t feel guilty for being just pieces of the woman he met, I just felt loved.

 So tomorrow the weather says there is a chance of showers.  Winter is still here and I’m okay with it.

Friday, September 28, 2012

Tips for attending a Wedding while flaring….


-Don’t add things to your to do list.

I am my Mother’s daughter, I can iron like nobodies business BUT I have enough things to deal with right now so I let my local dry cleaner do it for me.  I already needed to get a dress done that I borrowed(which I recommend doing because I don’t like shopping while flaring also it helps when you are budgeting) so I just took in some shirts for Chet as well.  I could have ironed them, but I am a perfectionist so I didn't even want to go down that road.  Plus I have had RA in my hands and wrists the longest so they are the most affected by my disease, so I showed them a little love instead.

-Do something nice for yourself/Plan for your feet. 




 I took care of two birds with one stone here.  So I went shoe shopping with my Sister.  Mostly I was just there for decision making purposes to give a yay or nay, I had resigned myself to the fact that my work flats could suffice.  My Sister picked out some AMAZING heels, the kind of heels us Autoimmune folks wear in our dreams.  Rather than feel really down on things I decided this was my opportunity to do something nice for myself.  My loving sister offered up her birthday coupon to save me a few dollars so I found a pair of wedges.  Wedges provide two things, the appeal of a heel with the support you really need.  Heels and I only get along when I am healthy and even then we don’t always see eye to eye, so wedges have become an answer to this RA girl’s dream.  Wedges give me the confidence I need to walk around safely but also let me feel like every other gal, which is something I crave. 

-Manage your side effects

I want to preface this by saying some people may not agree with this tip but it was a personal choice.  I skipped my chemo.  I convinced my Doctor that some minor congestion I had been having was a full blown cold.  Yes I lied.  I admit it.  Why?  Two reasons, a cold equals no chemo for Katie and one of my oldest and best friends is getting married I missed her bridal party and bachelorette party because of my recent flare I will not miss her wedding. 

-Save your energy and borrow some.

I planned my week out so I could get things done slowly and allow myself time to rest in between.  This is always a challenge for me.  I try to do too much all the time.  I am notorious for spreading myself too thin, not this week.  For the night before I have planned myself a movie marathon rather than going out, I’m leaving nothing to chance. Also….I got a B12 shot.  It helps, you should try it.

-Bring back up

I always make sure to have a few trusty stand bys.  No matter how tiny my clutch or purse is I always carry things like Nauzene or Bonnie(both are used to help with nausea and can be purchased over the counter), migraine meds, Norco and something to snack on.  It’s always a good idea to keep something small like crackers with you in case food is served late.  Weddings are a complicated business and I don’t do well on an empty tummy especially if I need to take some meds. 


For the day of I just plan on knowing my limits.  For me that will mean dancing a little less, sitting a little more, remembering to drinks lots of water, not partaking in alcoholic beverages and to just have fun.  Mostly I’m just thankful my first of two infusions has helped me enough that I can even attend.  Nicole is someone I love dearly and she is going to marry one of maybe the last few known genuinely good men left out there in this crazy world.  They’re going to have an amazing life together and I’m so glad I know them.