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.  

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 clichés 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?

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.

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.  

Camp Chemo

The weekend getaway you never asked for.

One of the major misconceptions about Autoimmune Arthritis is just how serious it is.  For many of us even our closet friends and family don’t know exactly what we deal with.  When I went in for my infusion many people were talking about our illness being invisible.  I’ve heard this complaint a lot more as of late and immediately I thought about how we can change this. 

Patients are commonly prescribed Methotrexete in combination with their biologic, never heard of Methotrexete?  Here is a resource, go check it out.

http://en.wikipedia.org/wiki/Methotrexate

Would you like the cliff notes?  Here are some fun ones.

Methotrexate (rINN) ( /mɛθɵˈtrɛkseɪt/), abbreviated MTX and formerly known as amethopterin, is an antimetabolite and antifolate drug(a compound such as trimethoprim or methotrexate which acts as an antimetabolite of folic acid, interfering with DNA replication and cell division by inhibiting the enzyme dihydrofolate reductase.). It is used in treatment of cancer, autoimmune diseases, ectopic pregnancy, and for the induction of medical abortions.^[1] It acts by inhibiting the metabolism of folic acid.

Adverse effects

The most common adverse effects include: ulcerative stomatitis, low white blood cell count and thus predisposition to infection, nausea, abdominal pain, fatigue, fever, dizziness, acute pneumonitis and rarely pulmonary fibrosis

This was not enough for me to show you just what Methotrexate can do and let me tell you there was way worse, I spared you.  Letting a camera roll during your time at Camp Chemo is literally not a pretty picture.  But with a little courage I thought it was time to get visible.  Although this is quite possibly the most unflattering photo of me, it’s a good reflection of the average reaction to Methotrexate.

 This is what I affectionately call Camp Chemo cuz you’re not going anywhere.  Any Autoimmune Arthritis sufferer will tell you to just snuggle up and get comfy this is our life.  So while you might be spending your weekend posting pictures of your anniversary, a vacation, a great night out….we’re all very happy for you(I don’t want that to come out wrong), I just want to leave you with a little more perspective.  Tonight you might cheers to your camera, blow kisses, make a silly face… but there will be quite a few people spending their weekend at their own version of camp chemo. 

We’ll be busy partying with our immune system who’s a notorious trouble maker and has a blatant disregard for our feelings.  In fact at times it seems they go out of their way to attack us.  When we’re very lucky our protective friends, antibiotics step in and take over….but they’re not all that reliable, afraid they’ll lose their scare factor if they come around too much.  So we’ll spend hours begging white blood cells to show up, but they are just too cool for school.  Steroids always get through the door at some point with that fast talking and empty promises and while they do a little for our image they do nothing at all for our self esteem.  And it never fails that this joint gets way too crowded by the protein gang aka our inflammation.  The only saving grace comes in the form of a narcotic cuz they’ll make you forget your problems….true they’ve got the goods but they never really take away the pain, these guys are the drug companies cooked up version of a band aid(a cover up).  Maybe just maybe our biologic meds can step in and play bouncer…but there’s always a catch….to get the bouncer you gotta have one of two things….the cash or you gotta know just the right person. 

I’m a Camp Chemo veteran since 1992, I know all too well how this party ends, now you have a better idea.

When in doubt(and pain), bake a chocolate pie…

…..and watch Steel Magnolias.  At least this helps me.  Funny thing about the pie is I don’t even need to eat it, I just need to mix it and bake it up and have it come out just as good, if not better than anyone else could do.  The kitchen makes me feel equal on a day full of reminders that I am less than.  Today I had a busy morning.  I drove to three different hospitals trying(unsuccessfully) to make an appointment to apply for MSI(county medical insurance).  Every place I went to sent me somewhere else or with a different phone number.  No one was rude but they weren’t particularly helpful either.  It makes me think of how many times I went out of the way to do my job well and all I did was book reservations and train new cast members.  I went to people who can shape a person’s life and not one of them went out of their way to help me.  And just to give you a better picture of why I’m upset, not one of them looked busy either. 

And what do I have to show for all this early morning effort?  Three different voicemails I left hoping to be answered, red tape and no answers. 

I’m going to keep trying though, my plan for tomorrow is to leave a message every hour.  I could just sit around and collect disability forever, it’s completely justified in my situation but I won’t!  Why?

“Because I would rather have 30 minutes of wonderful, than a lifetime of nothing special”-Shelby

And if you are having one of those days, here's the recipe for this pick me up pie.

http://www.foodandwine.com/recipes/minnys-chocolate-pie

From another good movie about southern women.....go figure.  My Mama would be so proud!

Are you there flare? It’s me, Katie

So it’s my new belief that you never really know how tired and sore you really are til someone smaller than you needs your undivided attention.  We’ve definitely had CJ down here with us when I’m not feeling at my best but this is truly the first time he’s been here when I was as bad as I am now.  That and for the first day and a half poor Chet was busting his butt working a 10 hour night shift that rendered him pretty useless our first full day with CJ.  But to his credit he more than made up for it when the weekend came.  I have no idea how he barreled through on maybe 4 or 5 hours of real sleep.  He actually makes me feel stronger just being near him sometimes.  Anyway our first day meant grocery shopping and replacing an xbox controller, cooking two meals, sewing up a treasured pillow pet injury and late night movie/popcorn time.  It doesn’t seem like a ton but it felt like the longest day ever.  I made it through though and that is what counts.  I even got up early the next morning to venture out to the water park.

Here is where RA presents challenges you don’t always foresee when making plans and promises to an adorable mini man.  Me and water are friends, always have been.  It can be heated or frozen to help comfort/treat/tame many an aliment.  It’s also a place I feel strong and capable in.  It nursed me back to normalcy in high school while I enjoyed years of remission.  It has kept muscles toned and strong and before my shoulder injury always helped me keep my weight in check.  I love the water.  Now in saying this, a water park is an entirely different animal. 

-Lots of walking on hard and hot concrete shoeless which doesn’t bode well for permanently damaged feet and toes. 

-Lots of climbing stairs.  Yes it’s usually one or two here and there but there are stairs everywhere, they add up.

-And there are waterslides.  For some reason my adult self had forgotten all about waterslides.  I guess our brain gets taken over by other things like stress and bills and what not and it crowds the part of the brain that used to contain all waterslide knowledge.

So part of me was starting to dread the idea of this water park especially as CJ grabbed my hand and headed over to the slides.  All of sudden I started wondering if I was going to be able to handle waterslides.  But how in the world do you tell your darling 8 year old that you can’t go too, especially when he’s afraid to go without you AND Daddy.  I can understand that fear so why shouldn’t we do this together.  That and there are already plenty of times me and Dad have to explain why Katie has trouble doing one thing or another I was not going to let this talk happen today.  I was going to do the waterslides if it killed me.  

Up the stairs we went.  And as the line moves further and further into the air my anxiety was raising with it.  That and lots of questions too. 

“Should I be doing this with my hips?”

“Can I hurt my shoulder at all?”

“Am I even gonna be able to sit down on that damn thing?”

And as we neared the top and I watched adult and child alike sit down and ride with absolute no thought in doing so, not a care in the world all I kept thinking is, this what everything I do feels like.  Nothing I do is simple.  The only thing that comes natural to me these days is getting sick.  Every little thing I do is hard work.  And now I am dreading this stupid slide that is supposed to be fun.  All I can think of is how embarrassing it’s going to be when I can’t sit down low enough to get down this slide and have to take the walk of shame back down the stairs.  Then CJ is smiling at my side and excited to ride and I think, I need to be excited too.  I need to know I can do this.  So I spend the next few minutes in line trying to communicate with my joints, telling my RA to just let me have this one.  Finally it’s my turn at the slide and I know I’m breathing heavy and cringing as I use the side walls of the slide to sit down.  Everything hurts.  I’m begging my ankles as they protest against the mere weight I have on them, I’m pleading with my knees to bend just a little more, swollen or not.  And as I get closer to actually sitting down I’m holding my breath praying I don’t fall on my new hips that are still not paid off yet.  It’s incredibly slow-going and I am really just slipping down the sides of slide wall more than I am actually sitting but I make it all the way down to the floor and I feel the water rushing around me and as I push myself down into the slide all I can think of is how much I love my body right now.  For the last year I’ve been cursing it and hating every painful moment but right now and for the next minute or so I am just like everyone else.  Every pill, shot, infusion, steroid and chemo treatment is worth it.  This moment is so amazing I want to freeze it and live in it for a while.  I’m weightless and pain free and actually having fun.  Water truly is my friend. 

Sufficed to say, even with the work it takes to go there and the pain that followed I’m a fan of water parks and even though I spent more time in the lazy river than anywhere else I still made it down 2 water slides.  I can still be me.  I can still have fun and I’m thankful to CJ for giving me that push I needed even if he didn’t know he was doing it. 

The rest of the weekend including school shopping, a hair cut, cooking more meals for my favorite men in the whole world and just plain being together.  Was it hard work? Yes.  Am I paying for it as I type this out?  I guess the pain pill, extra celebrex and heating pads can answer that question for me, but it’s the best pain ever because it means I actually lived this weekend.  It’s still possible to beat my flare and remember just who is boss of this body after all.