Times, they are a changin'

Six years ago I was getting ready for my wedding.  May 20^th was the day I thought I’d fondly remember as one of the best days of my life.  Only four years later I received official divorce papers on what should have been my anniversary.

My marriage fell apart due heavily to my disease and the pressure your other half feels when you get sick.  As much as I tried to warn him, as much as he witnessed and as many good times that came in between the bad days he left for greener, healthier and much younger pastures.  He cemented May 20^th in my mind as a horribly dark day. 

I’m very happy to tell you that May 20^th is now the official Worldwide Autoimmune Arthritis Day.  On this wonderful day people just like me will educate, support, and change each other.  The non-profit I am proud to be a part of is making history with a brand new virtual event that will host all kinds of chats, forums, and live presentations from real people living and thriving with my disease and other autoimmune diseases.  I can’t tell you how this has changed my view on this day. 

With everything that the last six years in my life has brought I’d gladly go through it all over again as long as it brought me right back here to this time in Autoimmune Arthritis.  I’m beyond proud to know that my hard work as well as many others and especially due to Tiffany Westrich(my boss lady),  has set in motion an amazing time to have autoimmune arthritis.  For the first time, in a long time, I can feel positive change in my bones. 

Here’s to IAAM, the new commitment in my life…I’m proud it’s my other half!  

                                                               I was a bride...

                                           ...but I'm happier in this relationship!

Join us, it’s going to be AMAZING!!!

http://worldautoimmunearthritisday.org/

Love, other drugs and endings that don't have to draw a box office crowd

"Cause when it comes to me,

Well, their kisses come free...

But they never give all the heart."

It’s hard to realize you might not cut it.  I’ve always been great at being the girlfriend.  Mothers adore me.  Siblings too.  I give everything I have in a relationship.  I give until there’s nothing left to give.  

In a month I’ll be 28….28 and starting over.  Only this time I’m pretty sure it’ll always just be me.  I can’t possibly just be picking the wrong men anymore.  I realized while I unpacked my things into the guest room at my parents house, for the second time in my adult life, that being the sick girl might just be too much.  

When my marriage ended I could have told you why.  I saw the red flags for a long time, felt him slipping away.  I think deep down I knew the moment he started cheating.  He, who will remain nameless, got lost in the chance to better his name by being with me.   I think Amy said it best when she explained he always wanted to play the hero.  Only thing is I think he couldn’t possibly understand just how constant the battle of my health is.  And when you’re not the sick one and you have choices, it’s a lot easier to sneak off with the young girl at work who can stay up as long as she wants to and has enough energy and ability to do anything.  I try to look at things from his perspective, with how much challenge I present to nearly every aspect of life, why wouldn’t you move on to greener pastures?  I’ve forgiven him, really.  I understand his choice.  I just wish he would have come to me and talked it out, I would have respected him a lot more than I do.

There’s a line in Sex and the City where Carrie says something about getting older and not dating wildly inappropriate people anymore.  This brings me to the present.

When you go through a divorce, you promise things to yourself.  You make changes and you swear you are a better woman for them.  I thought I’d prepared myself for what I expected the next go around.

Problem with me is when I really care about you, I go into fixing mode.  How can I make your life easier?  What can I do to help?  I take care of people as much as I can, because I know there will come a time when I will need them.  My life is full of asking for help and admitting defeat, so when I have an opportunity to be helpful I take every opportunity.  

Love this time around came in the form of someone who needed me just as much as I needed them.  It was refreshing.  I liked the balance.  I counted on this balance to help see us through.  Truth is, I expected him to give as much as I did.  And sometimes my expectations are too high.  My fault in all of this is thinking that we had the same frame of mind.  I thought if I could set us up for success for as long as I physically and emotionally could, it would be easier to hand over the reins when I was in need.  That everything would fall into place because I’d tried so hard.  I thought from the beginning that falling for someone who’d lived through their own trauma would make it easier not to hurt each other.  If I could be brutally honest about whom I was, he might be able to handle it because he knew what was coming.  I also let my age, my biological clock and my grief over things we had both lost take hold of my better judgment.  My life has an expiration date on it.  I thought I could make him understand that.  I thought if I gave him a life he’d been searching for, than maybe he’d give me what I needed so badly.  Problem is I usually assume the best in people.  Not that he’s a bad man.  He’s actually up there on the list of good qualities.  I remember being so happy that he never saw me as the sick girl, but I think in the end this was our downfall.  I have to live a certain life and he, just doesn’t.  Things move faster and incredibly slow at times in my life.  Turns out it’s very difficult to keep up with me.

Maybe I’m just too much pressure for any man.  Maybe putting my stresses and worries and complications on someone else is way too much to ask for.  I’ll probably always be able to steal kisses….not so much their hearts.

Cheer up Charlie

Lately everything seems to be such a mess.  I feel like I’ve been on the precipice of change for quite some time now.  All roads lead to it, and yet I have no idea what “it” is.  I’ll be 28 in a month.  When I turned 25 I made a plan.  I remember thinking 28 was going to look a lot different than it does now.  I have no idea why.  I thought I had better judgment these days, prided myself on making better decisions.  I thought I’d done enough work on myself to move in a new direction. 

I’ve discovered over the years that I’m a wonderful sister, daughter, friend, girlfriend, and co-worker as long as you allow for sick days.

Am I really blaming my RA for my misdirection?  You bet your ass I am.  The common denominator in all my problems is my sickness.  I can accept who I am all day long, but does that really mean the rest of my world does?  Today especially I’ve been wondering, would life be different if I was healthy?

10 simple steps to solving my problems:

1. Eat something ridiculously bad for me and all together comforting without feeling guilty.  I call this feeding my feelings, this brings me closer to actually acknowledging them.(this is what I tell myself to excuse the eating dessert in place of real food)
2. Talk it out with my girl friends.  Spill it, all of it, even the stuff I’m not proud of.  We’ve been friends for so long I know they don’t judge me because if they did we wouldn’t be friends by now.
3. Forget it for a whole day.  Do something very distracting and hope I can turn that part of my brain off for a just a few hours.
4. Drink an adult beverage.  The stronger the better.  Moscato?  Yes please.  Something fruity and girly? Sure why not.  Beer?  I’ll have 3 please.
5. Watch chick flicks where it all works out just fine.  Cry.  Yes this step is essential.
6. Make a playlist.  Notice it follows girlie movies, they can be such bad influences.  Lyrics speak to my soul.  I’d tell you my life story in music if I could.(and I could, try me)
7. Have someone validate my feelings.  Anyone will do at this point I just want to hear I’m right once before I can get over it.
8. Doubt myself.  This always comes later than I expect. I question all my decisions.  Then comes that moment where I want to slam my head against a wall calling myself stupid over and over again.
9. Talk to my sister.  This always takes longer than I want it to.  Some how I get back to that place where we’re little girls sharing a room and secrets.  I let her interrupt me and tell me I know better and let her say lots of complimentary things to me.  Even when they’re not nice, they are still nice to hear. 
10. Write down what I want in that moment.  Save it.  Read it back to myself once a day for as long as I can.  Then, just wait and see.

I’m usually in a much better place by step 10.  Not sure this list will do this time.  I want to get back to that place when life wasn’t so complicated; I was healthier and happier in that place.  Probably time to repeat steps 1-10 again.  Here goes nothing.

It's not JUST Arthritis

If this isn’t the understatement of my lifetime, I don’t know what is.  I’ve also been known to yell something similar to people who can’t understand my wonderful, incurable, aggressive condition. It’s bad enough that my joints are crumbling a little more every day, that every move I take sets off a series of snap, crackles and pops, it also comes with fevers, a weakened immune system, limited range of motion and that whole yo-yo weight issue.  I’m also pretty famous for the statement, it’s NOT THAT kind of Arthritis.  I’m lucky though. I’m not a shy person these days.  I’ll shake your hand and let you know what I have right along with my name.  It wasn’t always this way.  I was raised in a way to be thankful for the health I do have.  I spent so many years walking through Children’s Hospital where we shared a floor with tiny kids on dialysis.   From time to time I walked the same floor hooked to an IV playing hide and seek with terminal cancer kids.  I made friends with children who didn’t even get to see half the years I have.  It made me very grateful to have Rheumatoid Arthritis, just one of the MANY forms of Autoimmune Arthritis.  Because of this fact I’m also pretty famous for the saying, "I’m living with RA, I could be dying from something much more serious.”

While there is so much truth in that statement, there’s so much I left out over the years.  I’ve down played my illness for as long as I can remember.  I hid everything with a smile.  I went to school feeling like death, I sat out during sports and family events, I waved off looks of concern on a daily basis.  I never ever told anyone I was in AS MUCH pain as I was in.  RA was a heavy enough burden. 

My Mother drove me the 50 mile trip to the hospital and back where we paid co pay after co pay for what felt like an eternity.  I knew that hospital like the back of my swollen hand.  Blood tests, prescriptions refills, needles and weekly doses of chemotherapy were my normal.  I saw my Doctors more than I saw my extended family.  Everything about RA is tedious and expensive.  It’s relentless and unforgiving.  I felt guilty every day my family went through it with me.

Crazy part about all this, I know lots of people who felt and still feel the same way.  We’ve spent our lives trying to hold the weight of our disease with permanently damaged hands and knees on our own.  Doctors will classify you disabled, permanent and stationary, and in some cases, a mystery.  Even the word remission doesn't always mean relief in our cases.  Autoimmune suffers live with the traces of their active disease like a physical road map, but you can only see half of where I've been with my disease.  We've always been in a race against time searching out answers and advice without bothering those we loved.  We’re the most independent/dependant people you will ever know.  I realize that doesn’t look right, but meet some with Autoimmune Arthritis and you’ll understand. 

For years on end my seemingly harmless sounding “Arthritis” sent me to emergency rooms, forced me into wheelchairs or worse, threatened major organs and my vision, enlisted the help of severe medications like chemotherapy, steroids and made me desperate enough to try newly tested, unproven treatments.  When you have no answer, you will try anything. 

So maybe the answer I’ve been looking for all these years is for people to take Autoimmune Arthritis more seriously, to get just a little more informed and involved. 

It’s not just Arthritis, it’s a movement that’s starting May 20^th whether you’re ready for it or not.  Tomorrow I’m going to make an appointment for my next 6 hour infusion that kills off abnormal blood cells in my body, if you’re not doing anything maybe you could read up on it and tell your Congressman or Senator how you feel about healthcare for me.  I’ve been fighting alone for a long time, help is always welcomed.  

1 cup of worry

I'm on my way to being the best one armed baker in the world....ok maybe USA, ok maybe California, ok....maybe in Anaheim, or my zip code.

Point is I hate the internet.  No I don't, but I do hate having tons of random information available to me.  Constant pain in my shoulder and the possible prospect of it being fixed in less than a week sent me to Google and all the information I could possibly ever want and consequently not want to see.  So with nothing but time on my hands I carefully read over blog posts, warnings, worse case scenarios, malpractice cases all having to do with my shoulder injury and procedure....I was officially panicking.

I have no idea why.  I've had entire limbs replaced and every time something new comes along I turn into that scared 7 year old who knew my Mom's tears meant something was really wrong.  Panic, stress, worry, these are pretty normal feelings.  Know what happens when I'm stressed?

I used to detest baking.  I cook by feel.  I measure nothing.  I never follow a recipe, I peruse, I improve.  A recipe really is a suggestion to me.  Baking is not this way.  You have to use measuring cups and spoons, the slightest mistake can ruin everything.  There are always tons of dishes!!!   I'm a fan of one pot meals and baking never fit that bill.  But stress has caused me to be one with my kitchen aid mixer, my oven, and even those crazy measuring cups.  When I am worried and overwhelmed baking forces me to concentrate on something completely different.  For about an hour or more all that matters is flour, vanilla extract and getting my oven to hold a steady 350 degrees.  This is my sanctuary.

My swollen ankles, knees and fingers would probably prefer I choose any other activity but even the pain I have to deal with later feels like an accomplishment.

And I have to tell you that when Chet comes home and I am covered in flour, sweating and too tired to even explain he knows we'll talk later and he knows the delicious treats in the kitchen are going to be all his.  It also doesn't hurt that when he came home to chocolate chip cookies and blueberry muffins yesterday he told me it was sexy....that helps considering I barely touch my make up these days and for the first time in a week I had actual clothes on rather than pajamas.  That guy gets me...it's kind of scary.

Somethings got to give.

I'm more than a patient.  I'm more than my disease.  But my disease is everything to me.

I work really hard to change things.  I take every opportunity I can to find ways to change things in my world and for the future of people with Autoimmune Diseases.  I've flown around the country to promote awareness and medications, I've spoken to Doctors, patients and most recently lawmakers about this life, and you always leave with this warm feeling.  You leave thinking you've done your part.  I'm sure my parents and family and friends are proud of the credits that could follow my name, I feel this way sometimes too.  I feel this way until I walk through the Rheumatology wing at Children's hospital in LA.  I feel this way until I get an outrageous bill from my health insurance.  I feel this way until I read the posts from my fellow volunteers in my non-profit.  We're all still struggling.

No one really understands.  Sometimes I feel like I will be six feet under when it finally hits people that we're just scraping by.  It's such a contradiction really.  Our field has brought so much to the medical community.  We're literally changing lives.

When I was 16 I was one of the first children to help provide FDA approval for use of Enbrel in children.  Before this biologic I was in a wheel chair or bedridden for the good part of a year.  I have vivid memories of my older brother carrying me from room to room.  My Mother washed and dried my hair on daily basis, my little sister helped me with my clothes.  A doctor told me to my face at the age of 13 that I might not walk again at all.

After Enbrel I resumed a full time schedule in high school participating in sports, music and student counsel whenever I could.  I usually left my house at 7am or so and didn't return home til 7pm, when I was lucky.  I spent weekends at swim tournaments, volunteer events, heck I even worked on the homecoming float multiple times.  For two years in a row my schedule including a ROP class where I worked in a fully functioning restaurant for two periods out of my day, along with a my regular courses.  I was a woman on a mission.  Being active and able was a drug for me.  I thrived on forward motion.  I've had a paying job since the day I turned 15 and spent my summers splitting work with a class I didn't even need to take in summer school.

When I graduated high school I worked only full time jobs, opting for overtime and late hours whenever I was needed.  I always end up in training positions and take great pride in teaching others.  At some points I even worked two jobs.  So much of my life was spent on an imaginary side line I was focused on making up for lost time.

Currently I work four days a week if I'm very lucky.  Long use of harsh medications and therapies from what I refer to as "the dark ages of Rheumatology" have taken a toll on my bones, my stomach, my liver and kidneys and my immune system.  I catch every cold imaginable.  Sometimes I think they seek me out.  24 hour virus don't exist in my world, I know these as trips to the hospital for severe dehydration.  My bones have became so weak that when they took my left hip out to be replaced it literally crumbled into dust in my surgeon's hands.  If I had a dollar for every time I have heard the word infection reference some part of my body, I'd be a millionaire.  Washing dishes, folding clothes, and grocery shopping take a day of prep and usually a long inner pep talk with myself, and are followed by long rest periods.  I cancelled my gym membership when I received an angry memo from my entire body with these kind words, "come on Katie, who are we kidding now?"

I might be exaggerating that last part but in all seriousness I lose so much to this disease I can at least keep my faith, trust, and goals in the right place.  This helps me to remember no matter how sick and tired I am of being sick and tired, there's ALWAYS more work to be done.

Reality Television

Maybe I should stop watching reality television.  So I spent 2 hours of my life watching the Kim Kardashian wedding.  This was probably a bad idea.  I usually don't have a problem with rich people flaunting their riches.  I'm not bitter about people doing what they like with their money.  Sometimes I like to think that I would spend money like that differently but I am not in the position to judge.  Also I've seen quite a few articles and videos where that family does charity or meets with lots of make a wish kids and I do respect that.

Maybe I am just feeling extra sensitive because I am so broke as of late.  This wedding drove me crazy.  I think big weddings in general seem out of place.  I had a fairly large wedding.  When I look back, I wish I had done differently.  And I don't mean that just because my marriage ended in divorce.  In retrospect there is just so much more you can do with that money that will last rather than spend it all on just one day.  It seems so showy. Not to say you can't have a beautiful wedding, I mean people are entitled to what they want but that wedding was just....over the top.

Even before the wedding I thought of what they did to prepare.

Kim's Mom gets a face lift.  Really?  My Mom bargain shopped for her dress for the wedding and I think she might have got her hair done and a new pair of heels but a face lift, really?

Then I watched their gift registry.  Seriously as pro basketball player and whatever it is that Kim does, you're telling me that they don't both have fully furnished homes?  Could they possibly want or need anything else?  I love when celebrities just ask people to donate to their favorite charity, that is classy.

3 dresses.  Yup 3 dresses.  I remember trying on wedding dresses and feeling overwhelmingly guilty with their price tag.  Then alterations cost money too.  Why in the world do you need 3 dresses?  I just felt like, at this point this day was more about what they could get and what they could do more than it was a celebration of love and family.

To each their own I guess.

Chet and I talk about marriage from time to time.  We both come from painful divorces.  These scars run deep on both sides and having a chronic illness doesn't always make me feel warm and fuzzy about imposing it on another person.  We love each other very much.  I love him in a way I didn't think was possible and yet while some days the idea of marrying each other feels like the natural step there are also reality checks that make me realize that weddings cost money, even small affairs.  I wish TV producers would follow someone around with a chronic illness and share their life story so we have something to reference besides Kim's Fairytale Wedding.

Maybe I'm just sensitive today.  Good luck to them.  I actually hope all the tabloids are wrong.  I hate reading about divorce.