Updated for Father's Day: Family and the Green...

Me and my Dad...

As I sit on my sofa and watch my beautiful husband play a game with his little girl--It reminds me that not every girl's Father's Day were as magical.  So today I re-post this tale--one for every little girl that didn't have the perfect Dad.  For all the Father's that just didn't really know how to do-it.  I'm at peace with mine, I see his imperfections, his humanness and realize that it's in his failures that I have found my greatest strengths. 

I hope so many of you can find your peace too.... xo Kathryn 

Here is the original post: 

Today is my favorite day of the year. It is the day that reminds me of where my people are from. It is familiar, and it speaks to my soul… I wrote this deeply felt post about my father Michael Flynn, but I just can’t seem to hit post… It feels a little too close, that it may hurt my father; paint him in less than an extraordinary light, funny from the girl who has taken to sharing all of her emotions via this blog. 

Why resist sharing about a Man who died so many years ago and why am I resistant to share the brokenness in our family? I cannot re-create his life or make my childhood different…  

My story is what has brought me to this moment... We are all so imperfect, it is only in the next life where we find the perfection, so in my heart I know my Dad is at peace, he carries none of the worries, I carry for him… So it is with that openness and peace that I share this blog post about my Father… My Dad loved his little girl, his KT, his third child and I loved him. So today I share our story…

Family and the Green…

So this weekend, we celebrate St. Patrick’s Day, one of my favorite holidays. Sure, because I’m Irish Catholic; but more importantly, because it reminds me of my Dad. My very handsome father Michael Flynn. 

My father died of lung cancer in December of 1985. I was still wearing my catholic school uniform, when my mom told me in the car. I remember flattening out the pleats in my freshman uniform while I processed the fact that my dad was gone. 

As a high school student, I took the Metro (subway) to and from school daily; and that following Spring, I distinctly remember following a man off the train, watching him on the escalator. I was following him… Searching… 

Something about this man touched me, made me want to connect… Well he looked like my dad.  My mom was waiting for me in the “kiss and ride”…. I got into the car; the tears were rolling down my face.  I was a girl who missed her dad.

My parents divorced when I was four… It sticks in my throat when I say, it. I was so little, but it was all I ever knew…

My father didn't have the skills like so many fathers of his day, he lacked the ability to talk and explain his feelings.  I feel confident saying that my dad likely suffered, as many Irish men do, from depression and he managed it with alcohol. As a child, he would pick my brother and me up and he would drive us straight to a dark, sticky, smoke and stale smelling bar for lunch. While dad had several beers, we played video games, ate fries and had a few too many Cokes. I learned how to count change in a bar… in first grade…

I learned a lot during my dad’s Saturday field trips, the youngest intern project ever… My first on the job training experience, didn't end with learning to count change, it was the first step into the working world… bartending was my ticket to pay for college.

You see for me, bartending was familiar and safe, I have never been uncomfortable, felt threatened. I loved working in a bar.  And frankly, it was a great experiences, I learned how to talk to every kind of person. 

I have never been nervous to talk to anyone which is what I learned sipping cokes sitting on that bar stool next to my dad.  I learned how to cut people off, clearly and directly, tell a guy not to hit on me, I learned how to flirt, something the Sisters didn't teach me in school. And I learned how to be confident and in control.   

I also used these skills to snag my amazingly hot husband while working in a bar… 20 years later, that was still a good play… 

As an adult, my heart breaks for my dad… He had no idea what he was doing… He was clueless. He didn't know what to do with me, my brother shared his passions for darts, trains and electronics. What I loved and needed was his attention.  Not an easy thing to explain or to get when you are a temper-tantrum, vomiting, dramatic little girl… 

Poor dad… If only, we could have gone to a museum, or a concert… He would have seen me. Dad had a love of music, something I loved about his house. He always had music on; he loved a good party and loved to have his family all together.

Gifts that I have inherited; my love of music, still listen to his favorites, I love to entertain, cook and I throw epic, legendary parties…

I loved our Saturday nights, we would watch Love Boat and Fantasy Island and eat big dishes of ice cream in bean-bag chairs… dad was right there between my brother and me. I never could stay awake, so I just remember curling up next to my dad and falling to sleep…

I just loved that moment, that safety with him…

And when the feast of St. Patrick would roll around my father wore this emerald green hat… His homage to the motherland and I loved it… He wore it when he had his beautiful dark brown nearly black hair and even when chemo took that away… And the twinkle in his eye… And it reminded me of why I loved him so much… Because he loved us, in his deeply Irish way… 

His heart was on the outside, he loved too big and it wounded him deeply… It is why I can see his heart in my very Irish son… A true Flynn… A heart too big, too easily hurt… And one that I know my dad looks out for from Heaven…

I feel blessed to have had the shortest of times with him. 15 years, not long enough for a father with a daughter, but long enough to push my boat away from the dock, to set me out on the sea and enough to find my way home again…

May the Road rise up to meet you… 

Today and always…

If you would like to join me on this pilgrimage, filled with my bad spelling, self-invented grammar, and over all foolishness…  Click on the web version of this post and look for the “GET PILGRIMAGEGAL UPDATES VIA EMAIL” option at the top of the right border and enter your email address.

The Many Faces of Pain...

Ecstasy of Saint Teresa,

1647–1652 Cornaro Chapel, Santa Maria della Vittoria, Rome

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profzucker

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We all face pain in our life, the stub toe on the way to work, the toothache that won’t quiet and the countless skinned knee from childhood play.

But some pain is not so fleeting… For some it’s the emotional pain that just can’t be righted, that dark hole that can’t be scaled, still for others it’s the relationship that can’t be fixed and the hearts that will be broken in its wake. 

Or the loss of love, be it the pain of a child, whose dreams weren't realized; or your life long coffee and dance partner, your bed now cold, never to feel their warmth again. 

This is  the real pain that so many face daily… We pass them at the store, getting coffee or at the bank. For years, we sit with them in church or beside them at a football games, never comprehended their pain… So many of us are unable to reach out, make connections, we pass the same faces every day and touch so few… 

Or we suffer and feel no peace…

I feel pain today and it shows… 

It was supposed to be a special day off with the kids, we had shamrock chocolates to make and leprechaun cookies with special “irish” sugar, but it won’t be… I had to call my Irish Soul-Sister 

(ISS).

 The girl next door, at 8am and say I need you for five. I need her help putting a pain patch on my back. My ISS was there before the phone touched the cradle.

My ISS, well she can’t hide it from me, her face showed the worry of  watching my face illuminated in pain. We have been through it all in the last years… We know the shorthand of each another. It’s the voice, the way she runs her hands to her hair, when she can no longer take another thing, everyone else misses it, but I know it. We feel each other’s weak spots. One look and we can guess the struggle. We know the places to guard and never surrender. We know each other’s hidden stories. Women have this for one another. Maybe it’s the centuries of our men off at war, while the women raise, run, and protect civilization…We just love… And that is why pain will not overrun us.

This body, my body, is weak and broken. It hurts just to breath, much less move, it hurts to talk, to raise my voice to its normal sparkle… I’m so hoarse, from inflammation, from pain… I’m on my couch, with the sunshine warm on my face, and the sun also warms my soul and reminds me that we must continue, there is no retreat...

My Beauties can see it today, too.  They sense it and see me struggle. My beautiful children watch with eagle eyes, while I put a Mom smile on  just for them.  When you see the worry look on adults, you can rationalize, educate and teach… 

Not so with your Beauties…. They see a broken parent, and it is scary, and I know, because I lived it…  I watched my father die, I watched my mother fight a brain tumor, and lots of other scary things… Through it all,  I always, always understood when it was really bad... Children are far more intuitive than we give them credit.  

My sweet dear Irish Prince, he starts to act-out and gets a little or a lot fresh. He panics. He has such anxiety.  He then over compensates and wants to tuck me-in, kiss and bless my forehead, and I get a well-powered remote. “Rest mom, watch TV, it will be fine”,  it’s his own home-spun mantra, I can hear him self-sooth, “Rest mom,  watch a little TV,  drink a diet coke, you’re going to be fine, watch TV, and nap”. 

My Princess, she wants to fix, dust, vacuum, and do the laundry… My girl is 7, far too young to take-on the household, but she just wants to keep busy, very, very busy. I can’t think of a woman alive who has not perfected this skill… Stay busy and I won’t notice that the entire world just blew-up. My sweet little girl... she holds it together, until God bless her she can't. Then she is in a puddle on the floor crying... and I scoop her up, and snuggle her in my bed... 

One of my favorite Mystics and Doctors of the Church (what I wouldn't give to have a glass of scotch and talk to her  about the conclave.) is Saint Teresa of Avila. She said and I’m paraphrasing a bit, “pain isn't permanent”. But, she also said to God, “if this is how you treat your friends; it’s no wonder you have so few”.

Seriously, she is going to be a drinking buddy when I get to heaven. St. Teresa, she always gives me hope, I know she has had some good chats with God.

Whenever I’m really sick, or things have gotten a wee bit tricky, inevitably someone pulls out the Hallmark Card God line, “God never gives you more than you can handle.” 

But, sometimes, I’m not so sure…

I'm  overwhelmingly blessed,  I have faith, a husband, family (biological) and the friends who are even greater family and a support system that won't quit... He hasn't given me too much... 

But for some it is too much. For some beautiful souls, well it takes them. Their hearts were too big for their bodies, the pain was too great.  We all know these souls, we have watched them suffer for years of depression, or substance abuse or whatever prevented them from being present with us… to live this life… it overwhelmed them, like a wave coming ashore.

And yet some of us; we don’t go under. Don’t get pulled under by the wave. Why? I think, some of us are able to protect our big hearts outside of our bodies… We are able to open our arms and risk the pain. We are able to see, touch, embrace the gifts we are given.  The Gift of each other… Its more than community, it's our relationships within that community.

That is the gift. We can chose to embrace it, let the ones who love us in… really in… 

Or we can choose to attempt the fight.  Chose to fight, all alone and be in isolation. 

We have the choice…

It is not easy, it is uncomfortable, it is at times very painful… And that is what makes the journey one of hopefulness, of courage, of strength… 

Have we touched, moved and given, who we really are?… These are the ideas, the stories that live long after we do… The life we lead, the people we love… The souls we touch… 

That is the real truth of why pain isn't permanent… But love… Yes, love.

Love is everlasting…

Solitude...

Search for Solitude...

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andywon

 via 

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What Solitude Brings…

This week has been busy, busy in that my Irish Prince was home for days with a bad virus. I've struggled for solitude; that place where you hear yourself and you make peace and find a place for the contemplative life.  

You see my mind has been clouded by life’s noises… The one that starts with worry, and stress and fatigue. The one that begins whenever my children get sick, really sick like a fever that stays 104 for 5 days sick... 

That makes it hard for me to hear my crystal clear voice. It puts me in mama bear mode; ferocious, warrior, and tireless for my children. But, this warrior state is also not sustainable… She has her limits and she may come and go quickly. 

So today, Monday, I sit showered, clean and worn down by the to-do list that has gathered dust for two weeks, time that my family needed my warrior side. But, she is now very weak from these battles and susceptible to attack.

In addition, I have also had to wage war on my own health lately, trying to “get-in” to the latest brilliant mind that can help me, the person who can hopefully unlock the mystery that my body continues to hide. The confounding medical issue these days is that finding the right doctor requires a warrior like mentality. Sometimes it really comes down to connections, who you know, who your doctor knows, who will stick their neck out for you… Will they confront colleagues for you and open the doors when someone may be slow to respond? 

And here is the dirty little secret of medicine; you have to be smart and tenacious to get great care. You have to engage, question, counter and argue for your health. And you may have never been weaker than you are when you do. 

I have an amazing allergist/immunologist; she is a brilliant doctor, a mother and wife. I wish she didn't have to be my doctor, because in another life, I think she would be one of my closest friends… She gets it… And will get in it… 

She comes from what some argue is the highest culture the world has ever seen; Persia. I think of her as a Queen, because when she enters the room she carries thousands of years of her exemplary culture in her. She is my warrior, she fights for me and that is why she is my Persian Queen.  

My Queen went to bat for me this week, calling the boys’ world of medicine out for not taking care of me. In her regal, calm but decisive way, she let my medical friends know they need to be in it…

Which leads me back to solitude; in English we see this word as dark and sometimes foreboding. But when you return to the Latin or “solus”, it means simply to be alone or single…

Which is what I’m seeking when I use the word solitude.  We all need moments of silence.  We have to carve out the time, create space in our life for a little alone time… Make room to listen. 

To hear our own heartbeat, to breath, to quiet our criticism of ourselves. 

When we turn off this world and connect with ourselves and our Creator, we truly find peace and a path for the future.

Peace be with you…

Shells and T.V...

Shells in my house as a sign of my journey...

If you just caught a glimpse of me on the news tonight...(Here is the link if you missed it;

http://wj.la/Wb2hnK

)

Welcome! The story is true, crazy, I'm well aware, but true.

I suffer from Severe Cold Urticaria.

But you are here....so lets get to the getting...

Why and what is a Pilgrimage Gal.....

Let's start with the name Pilgrimage Gal, well it was a collaboration with my delicious Clive Owen look alike, Jeffrey.  I came up with Pilgrimage Girl.... He thought girl sounded too young.  I went to bed and woke up to an empty blog page called Pilgrimage Gal.  And that Friends is the name.

And what is it? Q

uite simply, It's a journey, my journey...and I share my life, struggles, and daily foolishness. It was supposed to be a record for my young children, a real time document that they would read as adults explaining about their Mom's health. 

I have always-been interested in people who take long pilgrimages come back with all kinds of wonderful, spiritual, life and personal revelations.... I have always wanted to hike "the Way" in Spain like St. James, so my writings are my spiritual reflections on this journey....

So my Pilgrimage is me on my Green Couch, not in Spain, and that's my story... Well kinda of.... You see..

A funny thing happened, other people started reading, commenting and these were folks I had never met.... but they were on this journey, too!  

I have never personally met many of my fellow travelers  Other travelers carrying their own sea shells.  But when, I use my voice, share my struggles, others have found comfort. And this is the gift of a pilgrim, the Spirit, whatever that is for you, works through us all....

So you ask what is this sea shell thing?

When you follow the path in Spain, pilgrims carry, or would wear shells as a symbol of their journey.  The shell on door posts, meant lodging was available. You also would use the shell as drinking cup or plate on your trip. So I keep smaller and larger shells throughout my home as a reminder of this journey. I might not be going far.... But don't be fooled, this is a journey none the less epic...

So that is my little update, explanation, on where things are today...

But, if you are really interested, in me or my story, click on the web version and check out the most popular post marked on the side. They are also some of my most informative....and a way to just dive into life here....

I leave you with the words of Mother Teresa.....

"We can do no great things.... Only small things, with great love."

May your little efforts today be filled with grace and love....

Thank you for joining me on this leg of the pilgrimage.....pick up a shell and join me, or if you have time, send me a photo of your shell.

      - Pilgrimagegal

Anxiety and Lions...

Let Your Inner Lion Roar

photo credit:  Alan Lucas | Dreamstime.com

Why depression and anxiety can’t live with a Lion…

So when this last flare rolled in, I was not ready for it and didn't see it coming… I just realized I had no energy and something wasn't right… And I was blue, down for no real reason and I started to worry, am I depressed?  Was this a new wrinkle, a new symptom?

I know the literature says people with chronic health issues are more likely to suffer from mental health issues with depression often leading the party…

Now don’t get me wrong, I have had periods of what I think is fair to call depression, since suffering from this foolishness… I’m Irish, have a long history of people on both sides of my clan, who shall we say, used alcohol as a life strategy…

And while alcohol has never been an issue for me, the episodes of depression have come on occasion, but for me have thankfully been very brief and always have come in the winter, when it’s been flipping cold and I’m trapped inside. You mix cold, me, bronchitis, poor breathing, bad pain, cabin fever and tons of prednisone and nasty cough syrup and you don’t have a well-rounded girl…  

When this happens, I immediately, call on my doctors; and my wellness guide/spiritual advisor/medical advisor/mental health sounding board, all rolled into my therapist. She helps me manage the periods and thankfully the episodes have rolled out as quickly as they roll in.

But the truth be told, I’m an anxiety girl.

You know the worry thing, as women and mothers, we all have it. I think they go together. You could be a girl that never had a moment of anxiety and the second that pregnancy stick changes colors, you are screwed...

I have shared that I struggle with the “Good Enough Phenomenon.” You know that internal dialogue that can de-rail your day or your life depending on how much time you have.

It begins with my all-star rotation: Am I smart enough, thin enough, witty enough, good enough to be married to my beautiful prince of a husband, I don’t deserve him, am I just faking this whole disease thing in my head for attention, could I be doing more to be healthy?

And my biggest worry: am I good enough mother, what could I be doing to be a better Mom to these beauties.

I've come to learn that these are the LIES of anxiety. These are the biggest parts of our soul; some of the things we are actually best at are the things that haunt us….

And, haunt us they do….and then we are naked and exposed for the whole world to see. The evilness of anxiety just gets in and takes over and you get to the point that it almost paralyzes you. The longer you make room for anxiety, the more of a bad house guest it becomes… 

It takes over more of your beautiful home and that beautiful, clear voice that you have in your soul? Well it gets quieter… You can’t hear her… Until she grows silent… And that is when you are in real trouble, because you have lost your voice… You have damaged your soul… 

You have lost the uniqueness that makes you strong, beautiful and unstoppable…

For women I think it happens so gradually that we don’t even notice at first. We are so busy, running, loving, sharing, giving, nurturing, that we forget ourselves. We put off; we neglect ourselves, neglect our truth, and lose our voice…

My dear friend, my California Beauty (CB), brilliant, amazing and the girl I would so go over the cliff with… We have a contract with each other. I’m not sure when we signed it, we just did. 

We are each other’s professional, personal, spiritual and honest girlfriend... We are also each other’s-safety rope…. When we met, it was because of our kids, but we are each other’s real deal. We speak each-others truth… We are each married to a sweet, smart, hot, introvert and well we are not introverts.  And we love our husbands; we are fearless Mama Bears and we have a host of similar life experiences… 

I think that’s what makes us unique soul-sisters….

What does that mean? It means we hold hands, and jump through, slam, crash, and break, mangle, and tell our comfort zone to “suck-it”! Destroying our comfort zone… It means we reassure each other when we need to step out of the box. To be honest, she does it way more for me than I have ever done for her. I think I have done it for her maybe once or twice.

She was the girl, who got me to “come-out” about my blog; she is the one I call when I worry, when the anxiety creeps in, when my voice is hard to hear… 

When the anxiety tries to take over, I call my girl; because she is the one who says you are: “Unstoppable, you are beautiful, trust that voice, you have to speak your truth, you can do it… I believe in you… and by the way, I’m driving, the heat seat is on, get some lip-gloss, we are going...”  I’m not kidding, and she shows up… we go…

Can I just say, I have lost track of how many times…

And you know what? I feel all of those things, not as strongly as she does about me, when my voice is a little shaky; it is nice to have a little push…

I trust her… I mean seriously, I’m willing to go over the cliff with this girl. And Jeff would say, “Fine”, he trusts her and loves her that much too.  

Whenever I say her name, he says “go”, no matter how crazy the idea.

But, here’s the thing, every time you smash your comfort zone, I mean really smash it, EVERYTIME, your true voice gets louder and it gets stronger and you trust it more and the flipping anxiety loses another room in your house. It loses another part of your soul; it just gets shoved out the door.

This is what I know for sure. Anxiety is NEVER good, it never helps, and it never makes you better, it just steals, robs, lies, manipulates….

And let me tell you, anxiety has driven me to throw-up, it has made me cry, it makes me shake, and it has kept me up at night….and question. Question myself…

Anxiety has never given me confidence, never made me push through, dig deeper... It has tried to rob me of my dreams….it never told me, YES, YES, YES, I can do that! Not once...

But my little voice has…. And she is starting to quietly, roar…

Oh yes, yes she is… You go girl!

Find your beautiful, tall, strong, unstoppable, voice and let her roar…

For the entire world to see. 

She is your lion. She is your truth…

Namaste… The divine in me bows to the divine in you… Always….

Raising the White Flag...

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portobeseno

via

photopin

cc

In other words….Doctors, Friends… and Flares

Well let’s just dive right in…I’m getting my ass-kicked in a bad flare. One of the worst I have had in a long time. I was not myself last weekend, tired from my Man’s trip and just had no rally. I was even worried that I was depressed (I will post on anxiety and depression later this week) 

So I should have realized, that I was tip-toeing into familiar territory, I fell asleep on the couch Monday night at 5pm. What mother can fall asleep during the craziest time of the day?  Jeff walks-in and I was-out, at 8pm he sweetly kissed me and put me to bed… I slept till 7 am… That’s when I knew, I was in a full on flare…

Flares suck, they roll in like the tide sometimes slow and steady and other times like a typhoon… I HATE’em… I never make peace. I tolerate them, work to fix’em and move on… I endure them, I don’t thrive in them, I just persevere and wait them-out.

Monday, I went in for my weekly blood test. I walked into Harvard’s office, and I got the look… Now as women, we love the second look, it means you’re hot, you’ve got it going on, but when you have a chronic disease… it is the kiss of death. When you have a chronic illness you spend your whole life in cover mode. I own more foundation, concealer, cover-up… I cover the pasty grey-white color on my face, I’m better than the world’s best make-up artists! So if you get the second look, and you are not channeling your inner Sasha Fierce, you are screwed… The whole office gave me the second look… 

So when you’re heading off the cliff, it is good to have some management strategies… 

What do I do when I fall off the cliff?  I raise the White Flag… 

I did it this week, I posted on Facebook for prayers, which always helps and I send out the white flag email, this email goes to my nearest and dearest girls, the ones who can see me without a bra, without make-up, who understand that right now showers are just not happening. Within minutes, it’s all covered… My girls took my beauties, fed them, loved them, and gave them back good, happy and really tired.  My Hawaii girl, sweet breezes and warm love, took my girl and fed us dinner. My Mini-A’s future mother-in law took my Irish prince, she is always waiting in the wings to be activated! (as an aside, it’s so important to pick your children’s spouses early. I feel good about committing in first grade, it makes wedding planning so much easier when all parties agree on scotch and bourbon). 

So that is part of my white flag strategies, know who has your back and don’t be afraid or too proud to raise the flag when you really need the help.  

The other strategy, is dealing with your doctors…

How do I work with my doctors? It’s a partnership. When you have a chronic disease you need to understand that sometimes you will spend more “quality” time with your doctors than your close friends…. You develop a short-hand and all good relationships require work… You need to own your stuff, your weaknesses, and realize that you have to be willing to negotiate… I’m an advocate for myself, and I also know that I can be wrong just as often as I’m right!

I’m not willing to leave any stone unturned… and that’s what raising the white flag means to me…You are willing to look at everything, try any specialist, go anywhere, because all it takes is one person who says, ”I’ve seen that”… When I sat in NIH and met a top expert and for 30 minutes he kept talking to himself saying, “Wow!  You really are the real deal, I have never seen anyone hive the way you do… you are really sick.” And he went on to marvel that I was able to function at all…. Well I was relived; finally someone who saw the real me… 

I may be unique, but I’m not alone, there are lots of us out there, people who don’t fall into the cookie-cutter mold for medicine… And that’s why you stay tough, stay focused.  

I write this blog, absolutely as a record for my kids… But maybe even more importantly, for other Chronic Disease suffers, the peeps who love them, for the family members who struggle to understand.  I hear all of  you, I get you, I’m in the trenches, and battling this broken medical system, fighting for treatment, expecting the best will come. 

I know that this illness and yours is horrible, but if I can from my green couch, share my experiences so your pilgrimage is a little easier…Then my pilgrimage has been given a purpose. If you love someone with an illness that you just don’t understand, I get it all the time… I hear you…just keep searching…

Don’t forget, you know your body, don’t ever let anyone tell you otherwise.

Raising the white flag, does not mean, you roll over or quit ever... I do stand firm, I HATE, steroids, they are a blessing and curse… Prednisone will shut down my inflammation, it will make breathing, and pain better… But, it has some nasty side-effects, for  it makes me anxious, keeps me up all night, makes me bloated, hungry and grumpy… I have to be really, really bad before I’ll agree to take them… and Harvard and I have an understanding. On Friday, he said, “You have the weekend to get better, on Monday if you are not improved its Prednisone” He told me the stupid icky high dosage and it’s not negotiable. And I made the face. “Fine Monday”…This is our dance…This is how it works for our negotiation. Come Monday, it’s all about honesty… 

I had to fly the white flag to get through Friday.  Sunday has been better.  I hope on Monday I’ll be able to take the flag down and make it through…. But each day brings a new adventure… 

If you would like to join me on this pilgrimage, filled with my bad spelling, self-invented grammar, and over all foolishness…  Click on the web version of this post and look for the “GET PILGRIMAGEGAL UPDATES VIA EMAIL” option at the top of the right border.

Impostors, Trips and a Fairy Godmother…

An Orchid in my living room.  Remember to bring the outside in...

Well it is Friday, thank goodness… We made it…

Jeff had a business trip. (He got home as I’m typing…my heart still leaps when he walks through the door… after 20yrs, it still leaps. He crossed the room and gave me a sweet kiss and I yelped, not with passion, nope with cold… dog gone, his nose is freezing…)

We were loved and cared for by the best, the loving ones who carry us every time… Flower Girl brought communion, and took care of ground transportation… Mini-A’s Godmother and my Fairy Godmother drove up from Norfolk and fed, hugged and loved us all week. Life is better when she is with us. My favorite memory of this trip is all four of us watching a Lego Star Wars movie together and I look over and my Fairy Godmother is laughing as hard as the peeps. How amazing, just to be surrounded by that unconditional love…

Fairy Godmother and I had a few moments of just the two of us, time that was so precious… At one point, she looked over at me, I was in pain, felt the cough waiting to break-free, I had taken my bra-off my ribs hurt so bad, my oxygen levels sucked and it sounded like I was breathing through a straw, it happens… And she looked at me and said, ”Kathryn I have known you for over 20 yrs., I know all of you… from, bartender, to professional rock star at Starbucks, to today… I know you… You have nothing to prove to me.”  

Hammer moment, you know when you get hit over the head when you are not expecting it, she was right!  It got me thinking; how many of us have that…. That kind of truth…  Thank you Fairy Godmother…

We think that we go through life as impostors, actors playing parts, the good girl, the bad, the sinner, the saint…. But when it gets right down to it, how many of us really know ourselves, know our truth… and seriously, what truth are we perpetuating, that we are successful, pulled together, sick,  happy…. When we are not… and how flipping foolish. When we stop and really look at the people who love us, faults and all, they get us, they know our truth… Why waste the energy, trying to put it over on our peeps….

So it made me ask myself that uncomfortable question, what was I trying to prove this week? That I was strong enough?, brave enough?, that I don’t have abandonment issues?, that every time he leaves, I worry that he won’t come back, liked Dad and my Step-Dad?

But, instead of all the uncomfortable questions, the truth is that I can be fine when my Love goes away. And he always comes back. Why do I try so hard, instead of just being honest…

So this week sucked, and it was really hard, but it also held tons of beauty and its share of exquisite moments.

Jeff has a yearly trip in January, and every January it kills me. January is always fraught with health issues, the cold, cough, chronic bronchitis… It is a hard month, filled with joy and pain, Mini-A’s birthday, pure joy, but four days later it’s a lot of pain, it’s the anniversary of the pulmonary embolism…

Four days after she was born, I almost died, and instead of it being a celebration of her life, my life, our life, it’s a painful reminder of what I have lost… My health, my independence, and maybe a part of myself...

It was the beginning of this journey, so every year… I have that moment… Maybe it’s a minute, an hour, a day… it just shows up… This year by coincidence, I had a doctor’s appointment and saw Harvard, the guy who admitted me way back then, and cares for this beautiful broken body, and back then he promised me, that I was going to make it through… and he kept his promise.

I distinctly remember being in the Catholic Hospital, looking at both Harvard and Jeff and saying, “I’m afraid”,  still bleeding from baby girl’s birth, worrying that I may hemorrhage, or die from the legions of blood clots in my lungs and saying, “I just want to see my baby roll over” and I couldn’t even think about that precious two-year old, blue-eyed wonder at home, who’s chubby hand held mine… And then Harvard said the line I will never forget, “you will see her roll over and so much more…“ And he was right; he has kept me alive, and living… So in my best sparkly voice, I thanked him again, seven years later, but he turned his back for a second… I think it gets him… No one chooses medicine to just duct tape people together. They chose medicine to make people well, not just to keep them living.

And while I don’t wish this life on anyone…  What I do wish; is that everyone could put on my glasses and see how clear life can be… Don’t get me wrong, I still really don’t like some people, I call people out… But, I do it with intention, with clarity…. I see the world as it is… I’m the girl who’s heels clicked the floors and took names, told executives how it was gonna be, and I’m the girl now who tells her Doctors how it needs to be…

I’m the wife, mother, sister, daughter, friend and (I hope to someone) a Fairy Godmother….

I am a woman that could never have dreamed this would be my life…

But, it’s mine and I have much to be grateful for…

Namaste… The divine in me bows to the divine in you … The Pilgrimage Gal….

If you would like to join me on this pilgrimage, filled with my bad spelling, self-invented grammar, and over all foolishness…  Click on the web version of this post and look for the “GET PILGRIMAGEGAL UPDATES VIA EMAIL” option at the top of the right border.

The Recipe for Happiness...

The Recipe for Happiness…Oxygen masks included…

Courtesy of the Graphics Fairy

I have been asked the same question, quite a bit lately, "how do you stay positive?" I have had lifelong friends, newer friends and professionals (educators and folks who provide medical, spiritual and therapeutic support) ask me the same. Well it’s a recipe… and one I’m happy to share. But spoiler alert, I have never, ever, ever walked alone… and I don’t mean just in my spiritual journey. Seriously, you don’t survive a bar fight without your wing man, and I have lots of great wing men!

First, a little background on the week; Friday was insane, my Clive Owen look alike, Jeffrey and I had an important appointment yesterday. We have been working to make school and life easier for our beautiful, Irish Prince, Ian.  My Prince of Ireland, his view of the world is very different.  As parents, they need us to be their champions. And when I say champion, I mean that it’s your job to surround them with the brightest, most loving people each and every day.  And it’s so easy when you meet the blue eyed, Wonder Woman that is leading the effort to help us understand how our Ian's brain works… Life is so much easier when your co-collaborators are better people than you are!

But my Mini-A (MA) in training, Norah, had to throw us a curve, she woke up yesterday, barking like a seal and refusing to change out of her PJs. Now for my Princess to punt on school; is like the guy running your Super Bowl pool, turning down a paid First Class Ticket to New Orleans. It’s just not happening… So MA curled up on the couch and rubbed her snotty nose on me, and we snuggled…

Meanwhile, I’m in panic mode, we have this meeting, I need to find soft places for both my peeps to land, my main squeeze has obligations next week that are taxing, my plan for that fell through and its 8 am, and I’m stressssssed… Not good, and not good for the girl with the taxed immune system..

So out of my Magic Bag, I pull my trusty iPhone and two texts later, I’m totally covered. MA, will hang with the Superstar of the babysitting world!  Irish Prince is hanging with Flower Girl.  Across the street, I have three of the best babysitters in the whole world, the eldest had the nerve to leave for college, her two younger sisters are in high school and middle school, respectively. The "Girls" and their parents, save us from catastrophe daily, and in exchange, I always have the stick of butter and the food processor to lend… So my girlfriend, code name Sunshine, because when you talk to her you feel the sun shine warm on your face,  fortunately for me, is working at home, and has my back… Sunshine has been in my room in the middle of the night for one bit of foolishness or another too many times to count…

So after a few phone calls, turns out, she says the best line ever. I tell her I’m in panic mode, she laughed and said, no it is just, “Ferguson Life”. A life that is “serious crazy all at once”, a sick child, a very important meeting, stupid new medicine side-effects (that need immediate attention), serious cold attacks inside, not to mention the walking to the car in 20 degree temperatures, and covering the husband obligations; so when my Sunshine Girl said, “Ferguson Life”, I burst out laughing, like tears in my eyes laughing, meanwhile, snow changes school schedules, and life is still moving, really much too, fast… But, I just laughed, because it is our life…all at once the joy and the pain…

So I promised the  recipe, what does it look like? It's really simple… It's equal parts Faith, Hope and Love… as Catholics we call it the Theological Virtues. It is so simple…

I have been blessed with the faith to move mountains…not sure why, but I do. But, I also have an unwavering faith in others. Faith that my people are going to carry me, as I try to carry them, that the teachers who care for my kids, love because… I love them… seriously, why would you be an educator if you don’t love…

That the world is a loving place, that good people are so much busier doing good than bad…That while life is really, really hard, you can’t get anywhere without a community, whatever that looks like for you.

I look at my doctors and I demand the absolute best of the best from them, I’m way tougher than any Attending ever was... I won’t let anyone who cares for me phone it in. I call them on stuff. But, when Harvard or Hopkins or any of my team tells me I’m wrong, really wrong… I listen, I trust, I really trust, because, I have faith in my choices, and that leading with an open heart means you trust and put your life in those choices… When you view the world that people are really, really good… It makes trusting others a whole lot easier….

Now listen, I'm no Saint… I have cut people out, closed the door, seriously, I've slammed the door on a few…but that’s on the people who have failed to follow the recipe. I can’t surround my heart with the people who lie, who don’t lean with hope, who don’t strive for happiness… Some of these people are close, very close and it hurts….  I had to protect my family, my core, but life is about the oxygen mask….

On the plane when the air pressure drops and your life has value, put the mask on yourself, your nearest and dearest, and then you can care for others, but the comforting part is that often, it’s others who are putting the mask on you…

And that’s why I try, really try to follow the recipe, to do that every day… you can’t walk alone, you need equal parts faith, hope, and love… try it, you will be surprised how joyful the world looks from this beach…. And my beach is going to be in Hawaii, where my friends and I will start a colony, where we will love and care for each other… it’s just a dream of course… but miracles do happen… they really do... I see it every day…

May you find your miracle of Hope, Faith and Love in the world today and always…

xo, Kathryn

PS…..If you want to walk this journey with me on a weekly basis… the horrible spelling, bad grammar, and punctuation… the crazy of the pilgrimage of this gal…. type your email in above…and I will magically pop-up in your inbox…. and your comments, are the best thing going… I love to hear from all of you…. K

Bringing the Outside In...

This week has been amazing, for many reasons... What has amazed me is every one's kindness to my coming out on the blog... About the foolishness of it all, how hard life can be...

I'm a little lost as to what to say this week, I want to stay authentic, but don't want this to turn into "woe is me", I want to share with honesty, but not leave the people I love feeling, well, alienated. This is a tough balance for everyone who loves me and frankly, me who loves them. How do you support, how do you talk about life when it is so obvious life is tricky. And truthfully, why is it so easy for some and so difficult for others? What is it that they do that others can't or don't? 

I have been beautifully surprised by the outpouring of folks who have chronic illness' and felt like my words this week resonated with them. We all have different struggles, but put people with chronic conditions together and they say similar things... And we relate to similar issues, we understand the lack of balance. And my hope, wish, goal; is to help put my voice with their's and share this commonality of our struggles and share what it is that keeps some peeps doing so well staying positive in a world that can often make people negative...

This is the balance that every person who has faced a serious disease struggles with... For all the great Hallmark cards, the one for chronic disease, well it lacks... Because what do you say? And what do you say when the people you care about look bloated, tired? Or when they look great, happy and joyful, but deep down you know it won't last? 

It is not easy being a friend to one of us...  I do understand, but that doesn't mean it doesn't hurt when you feel let down by the people you love.  Having a chronic disease is a lot like your dearest friend having the worst boyfriend. How do you hold your tongue, when they cry on your couch yet again... Because he is a jerk...  And then what do you do when he sends her roses? Or better still when he has really hurt her and then she goes back? 

Chronic conditions are a lot like the bad boyfriend, how do you support when you don't want to? Or don't have the time or energy? You want your girl with the good Prince. Don't we all? And it is so easy to get mad at the doctors because they prescribed the millionth crazy treatment and your girl still looks like hell... Or you see her out and about Friday and she cancels at the last minute again on Saturday. How can she be fine one minute and fall apart the next? Why can't she rally for you for once? You can't wrap your mind about it and you can't help but take it personally. What have I done? Why is she always avoiding me? Again running back to that stupid boyfriend... How can you have a friendship built like that???

Well I go back to my handicap parking from last week.... It is hard to imagine how big a mess I am when you see me parking at Target, with my make-up on, Mini-me in tow talking a mile a minute, me laughing... To imagine the 2 hours it took me to prep for this twenty minute field trip. Often it is just me working on my Oscar, man I can sing, maybe not like Anne Hathaway, but my daily acting is way better than hers. I do love you Anne, and I want you to win that Gold bald man, but my struggles are epic. 

Getting to see my girl play b-ball yesterday was the best of the week. My pain has been excruciating all week, I missed an important dinner on Friday, my body was wracked with pain, I was slurring and it was stupid cold outside, Jeff called me a disaster. 

But Sunday afternoon, I laughed until I cried, the first grade girls basketball was priceless. It was very cold in the gym, I  had my coat on and a blanket. But, I MADE IT! 

On the really bad days I try to live by the creed

bring the outside in

... Be it whatever, it makes me miss the rest of the world a little less... My flower girl (FG) she helps me, for the last two years she shows up on my door with five TREE branches from the wholesale florist, she brings the outside in... I tend to these branches  and wait in admiration and thanksgiving when they bloom for me...  I have her with me, when I wake, sleep, upstairs and downstairs... FG understands that...

This year's gift from my Flower Girl (FG)

I need the outside too, even when I can't join in! She also brings me communion, she brings my faith to my doorstep, when its too cold or my body can't attend. My spirit does and she shares that with me too... FG also shows up and says, "it is time for tea", she doesn't care that I'm in pjs, she just wants her "old friend" to chat it up. We talk about everything and then she says, "tell me how are you really" and then it changes, she listens, doesn't offer advice, doesn't say anything about this, and she is a nurse! She listens... And I find that she does offer me information in a quiet way... 

You see FG's mom battled chronic disease for years, and I was lucky enough to call her Mom, my friend too... Maybe that's why she makes it easy... She accepts me for where I am today, this moment, not the girl I was five years ago, and not the healthy woman I will be in the future... 

She loves me for where I am today...

Isn't that what we are all called to do... Be present, be here, really here right now... Not to worry about the boyfriend you want your best friend to have, but to love her in the messy life she has today...

So that is a little part of my world and a bit of advice to my compatriots. Bring the outside in, be present, love the life you have today, and be grateful for the messy... 

Today, I an grateful for you and my branches...

Namaste... 

The Real Scoop...

Sorry for the long post… I just have so much to say…

A dear long distance friend asked for the “real” scoop.  So here goes...

I hesitated with this post, not for what others might think, it’s just that it is hard to talk about…

Many people think that I am an extreme extrovert, and while that is true; I am also very private. When I say private, I mean I don’t always share all of what’s in my core. I have written about it for sometime now but, it’s important that I talk about the real toll this disease has taken on me…

I am not sad, angry or in the corner licking my wounds. My spirit is strong, that’s why it’s a good day to share the pain, because I can go back to living when I am done writing. As I share this post, I write it mainly for the future. For the grown up Ian and Norah.  For their future selves, of their lives filled with adventures, joys, pains and roads not traveled, as an insight into what is real, what their Mom was battling as she did the best she could for them…

For some of you this post may be too hard to read, or too “real”. I get it, but I need to put voice to my truth…

I am sitting on the couch listening to Nanci Griffith and Norah is quietly singing and she doesn't even realize it. She is playing with a gift from her birthday, an adorable stuffed animal from my amazing friend Jess and her beauty Eve. The song is so appropriate, “Across the Great Divide”. If you have never heard Nanci Griffith, you are truly missing one of the greatest singers ever. She sings folk, but its more than that, she tells stories with her voice. I hear her sing and I hear prayer, it speaks to my soul. She has too many albums to pick my favorite, but if you don’t know her, you should...  But, back to my road...

Having a chronic disease is a betrayal, it’s personal, it’s DEEP, because your body has unintentionally done it to yourself, and that is hard. You weren't stung or bitten, you weren't hurt by someone’s negligence…

Your body has just thrown in the towel on you…

Now this disease has given me gifts; I never would have known, but today’s writing is about loss and pain…
 
Today is about what I can’t do…

Severe cold urticaria means I can’t take food out of the fridge without gloves, 10 seconds of holding a  gallon of milk can make my hand double in size, I have multiple episodes a day, the worse my attacks, the worse the pain comes. My pain today is excruciating, my lungs feel like I ran out in the cold all day and then threw myself down a marble staircase. My ribs hurt, bone pain, when I take a deep breath, it not only hurts, but it makes me cough, so my breath is short and trying. Days like this are often and can really sap your spirits, but they come when they come, or when I over do it.

What is overdoing? It’s what you call living.

Yesterday, I got up for the birthday girl and brought it for her. I took a nap, but by dinner, it was obvious I was done.  Attacks brought on by the cold feel like bee stings on whatever is exposed, and the pain gets worse as I warm up, and then I get bone pain and my body swells up everywhere. You feel like you drank the whole bottle of tequila, mixed with PMS, and then throw the hangover on top. I just feel pain everywhere because the inflammation is given gasoline by the histamine response, the body’s ADT alarm system… It’s that someone beat me kinda pain, and my normal pain tools aren't providing the cover they usually do and the side effects suck, after a certain point I may slur my speech from my cocktail of meds or I just sleep the afternoon away. That’s hard, no one wants to waste a day, and I am much too busy!

Bad days mean my legs are wobbly like jello or stiff uncomfortable so it’s hard to walk, I shuffle and some days my balance is off.  My words aren't always easy to come, sometimes that’s from the meds and sometimes it’s the disease, brain fog is a BITCH and I’m not getting any younger. I fell in Ian’s room today looking for dirty socks. That’s just the pain and early morning lack of mobility.

I wake up every morning in pain, the more my core body temp changes the more chances I will sweat which triggers the events again. I change my clothes three times a day, due to the full body sweats. I have taken to buying multiples of the same outfit so people don’t notice my costume changes. When I go to the doctors office they have to take paper towels to my body to remove the excess sweat when I take my shirt off… I carry undi’s, Bras and tshirts in most of my purses, because when I sweat through, I then get the chills horribly and have to start all over again. I have this problem all year round, no temp is perfect anymore. The sweating causes hives as well. My doctors have forbidden me to exercise. Who has a doctor that tells you not to exercise?!  But, when it can send you into anaphylactic shock, it’s a problem. All of these changes make me very nauseous. So I throw up often from the cocktail and other times I just puke from body weariness of too many temperature changes…

So sometimes, I get frustrated when people say, “Oh, if you could get the weight off you would look/feel so much better.” Or, “why don’t you do more”. Or, "why don't you get out of the house, it will do you good". It doesn't even make me angry anymore; it just hurts… Hurts to my core, the place few get invited…

Prednisone is an enemy to women. It helped me pack on the pounds. But, currently I don’t eat any gluten (that’s been for 6+ years), and now I’m not doing dairy, soy or sugar, to hopefully reduce the inflammation.  We’ll see if it helps.

So it’s not like I’m sitting down to a gallon of ice cream. Nope, ice cream makes my throat close from the cold, internal hives really suck and you can’t breathe.

And as my final aside, I have a handicap parking permit, and I use it when I’m by myself or with the kids. So if it is cold, I can get inside as quick as possible before the hives, coughing and full blown cold urticaria attack begins. A short hike across a cold parking lot can be killer. Please don’t look at “normal people” using handicap parking permits as slackers or jerks, you really can’t see all disabilities. When I have makeup on and run into Target, you have no idea what I went through to look this good, so don’t judge...  OK thanks, I needed to say that!

That’s why when I say this disease is killing me, it’s not from a place of fear or depression, it is a fact. My attacks are getting worse, they come more quickly, I’m constantly in fight/flight mode. The disease has more gas than ever and the experts are stuck…

Harvard told me that there have been numerous emails flying around discussing me and my case from the top EXPERTS. Where Harvard said, ”I had to look stuff up that they are talking about, it isn't even in textbooks...“ One expert says, “o’ I have seen one like this, to which someone else said o’ I've only ever seen 4 or someone else says I've never see that..”  Harvard said, ”they are talking about such unbelievable diseases and they are talking about your symptoms.”

But, most importantly, Harvard told me, ”these experts are interested, invested and motivated.”

I can’t ask for much more… but, I am…

So to my beauties, please know that I fight for you both and Daddy every single day… We will find answers, I will be well and I couldn't love you any more than I do…

To all of you on team Fergie; I love you, thanks for holding my hand on this journey.

I must get well, because I have some people who need me to play…

Namaste… the divine in me, bows to the divine in you….

Hopkins Part Deux...

Well seems like a good time to circle the wagons and update my latest adventure...

First, someone is always worse than you... 

We pull into Hopkins and this adorable little girl with her hair in 10 braids and clips was jumping out of her car seat in the handicap parking spot. In her bright pink coat with cozy green scarf... We became fast friends in the waiting room, her name is Sarah with an "h" and she is four and was breathtaking. She had this awesome kid tablet that made kitty cats, hopping frogs and poodles. She even corrected my grammer once... 

Sister Teresa would have loved this child! I can only make assumptions as to why a healthy looking beauty would have a handicap sticker and need to be at Hopkins... But the look of worry on her mom's face told me it wasn't for the cool yellow wristbands all the patients got.... So pray for little Sarah, she stole a piece of my soul...  But let's be real, I gave it willingly...

So that said, after saying good-bye to Sarah and getting my vitals done, we got cozy in another cold exam room and waited for one of the revolving door fellows... But that didn't happen, we got the big dog, he just rolled in and sat down and we got to work... 

He acknowledged that the magic shot has failed me and that it was time to discuss additional therapies. Now I'm the first to say our first encounter was not a love connection; but he won me over this time, he is the guy, he knows it all about my condition. Hopkins wants to send me back to NIH to make a new friend who specializes in an area that makes my condition unique, so we give him props. 

He also gets that the other Docs on my team are invested in me... He liked that and appreciated their concern. 

So the new year brings a new scary drug therapy that gets 4 weeks to work and another field trip to NIH... 

A new fork in the road...  We will see where this new one takes us...

Namaste