The Elephant in Every Room...

The Elephant in Every Room...

The Elephant in Every Room... How are you feeling and other lovely questions...

I have had a beautifully busy last few weeks. I have attended dinner parties, birthday parties, a fabulous sparkling water and wine club with the girls, and some fantastic chats on the green sofa. And I'm struck by a common thread... I'm losing my conversational edge... No, really, I don't know how to do social chit-chat.

On my red pen list of things I'm doing wrong: I'm struggling with how to handle well wishes... How crazy is that?  And I know my friends often struggle with the same... 

These days any social encounter, a quick stop at a store, or just being out and about, I'm treated like a celebrity. People are surprised to see me, so they flock to me to say hello, and I LOVE IT!  Nothing makes someone who has a chronic illness feel better than friends and loved ones who are happy to see you... It fills your soul with an extra energy boost. I'm seldom alone on these outings; and I seem to always have a beauty or two with me, and they smile and hold a hand, happy too, to have me out-and-about!

But inevitably the question comes, "How are you feeling?", and it's a hard-one to answer, because usually it has taken all my energy to be anywhere... For instance at Easter, so many friends gave me hugs, love and told me I looked great and asked, "How are things?" and I didn't know what to say. I either make a joke about my magical make-up skills that cover the dark bags under my eyes and horrible pale skin.  I used the make-up line, five or six times... Or I say "fine", which is a lie; or my gran-daddy answer "horrible", or I say "good-enough", because that is all I have. All of these answers seem wrong or lacking...

My Sunshine Girl always asks me in the most loving way, maybe it's because she is Sunshine...  She asks: "Is it a good day?", and I love that question, it's not about my body, or my mind, or my spirit, it's about all of me... And that works for some reason. Because it gives me more ways to answer. And my answers are more than just how my body is working... Sunshine doesn't even know she asks it that way, it's just how her spirit works, open and honest. It gives me the chance to say it's a perfect day, because my beauty just sang in the choir, or  it's a great day because the sun is out and it feels great on my skin. Or I got to the cake store and we are in the possession of some amazing ingredient... You see, I'm the first one to tell people when I have great news or I feel good...

Now if you are someone who has asked me, "How are you doing/feeling?", don't beat yourself up... I catch myself asking people all the time, to friends who are ill, have parents that are sick, and then I get in the car and kick myself, I know this is not an easy question with a quick answer. Or classic/favorite: ask a pointed question with kids standing around, done that more than a few times too... I'm the one who has the illness; the expert. Nice...

We just all want to fix what is broken, our hearts and minds act so differently... Our hearts won't tolerate the pain of a loved one, and we can't settle in our hearts suffering of any kind. To solve the problem, we allow our mind to act as the "fixer". How are you? What can I do?How can we fix the problem? Men hold doctorates in this. Men are hardwired to fix, that's why women get so frustrated; we want them to listen and feel... And we are all too aware, not everything can be fixed. 

There is nothing wrong about any of it... And sometimes it's fine to ask, when I'm alone... But some days you just want to give your chronic disease a holiday, and you from always being known as the sick girl.

Go back to my celebrity analogy for a second, you wouldn't go up to Meryl Streep if you saw her in a restaurant with her kids having a family meal to say, "Hi, I'm your biggest fan, can I have your autograph and talk about your theory on acting"... Listen, I'm not trying to say I'm a zillion time Oscar winner, or I'm better than anyone else... I'm just saying, sometimes Meryl wants to be Mom, wife, girlfriend, not Academy Award wining actress...

Does this make sense at all? Or do I sound like some crazy snob? That is not my point, and if that is your takeaway, I have completely failed in this post. It's just, I'm so happy to be out and about, I want to talk about you, your family, can we gossip about shoes, spring trends, or kids?  Normal stuff and give my chronic disease a day off... 

And to be honest, sometimes I worry that I have lost my cocktail party banter, that I can't talk about anything else...

But, I do understand, it's a double edge sword, because I/we/all chronically ill folks, don't want to be forgotten, and do want you to ask how we are... So it is a fine line... At times, I'm more worried about you, I don't want you to be disappointed when I tell you that my life is hard, and my pain is really bad, and I'm going to be in bed in an hour because I gave all my energy away... 

I do love a quick email that says, "give it to me, what is the latest", and I will speak my truth if you come over for tea, and we have an hour to visit. 

There is no magical answer.  And I know that it is more about me and how I react to the question, then the question itself.

But, I can tell you what friends have said that I have cherished: the extra hug that says, "you look beautiful", "The kids are so happy, don't worry", "This event was better just because we got to see your face", "I love seeing you on my couch, (and I don't care you are in PJ's)", "Jeff is always smiling with the kids", "I'm so touched you made it, thank you", "I've got this spot on the sofa for you and a blanket", or just the knowing smile that says, you rock Kathryn and I'm all in with you.

This post feels heavy handed, and I don't want it too... We all just want life to be normal again, but that may not be possible.  So this is what normal for me looks like today... 

It all can change in an instant... 

I heard this quote on the news, I wish I had the source; but it's too good not to share:

"Good things are coming, they are already planned for you!" 

Well alrighty then... Lets get to the getting...

More than any post I have written, I want your feedback... So please share your thoughts, your challenges with love ones or your experiences with chronic disease.

And please, feel free to share this post. Sometimes just pulling the curtain back and talking about the Elephant in the Room, helps us all...

Namaste (the divine in me, bows to the divine in you)

xo,

Kathryn

The P

ilgrimage Gal

photo credit:

David W. Siu

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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.

A New Year...

A New Year...

I started off January with a bang... I got my latest Xolair shot and I'm meeting the team at Hopkins in a couple of days.

January begins with a happy and open heart, it was my best Christmas season in years. I attended all the events I had hoped to and felt well for the majority of them.  All seems to be right (or at least better then usual).

January begins some new adventures that I will chronicle here while putting to bed some old ideas...

I feel truly blessed to be in this place at this time.

Take some time to work on your spiritual journey, whatever your faith or beliefs.

There is no greater time then today...

Namaste

Beef, Xolair and Hopkins, Oh My!!

Beef, Xolair and Hopkins, oh my

Sooo much to say today… I have been remiss in writing, and that is for a number of reasons. Some selfish and others because I just can’t put my feelings down on paper. Jeffrey (a.k.a Clive) reminds me that writing helps me and it is my legacy to the kids….that one day they will read these posts as adults and understand their mom and childhood a little better.

I have started the “miracle drug” Xolair and well so far it’s not my miracle… Jeff and I went through so much red tape to get me the shot. We were denied more than once and put together a packet of over a hundred pages, with doctor’s notes, personal statements, studies showing it should work for me, and statements from friends who have witnessed my health in decline. So when after two shots (and two months), I see nothing, and when the leading expert at Hopkins tells me to sit tight till January… well my patience is thin.

On Friday a cold roast from the fridge, sent me into a downward spiral.  The simple task of taking a roast out of the fridge, letting it sit on the counter for 30 mins and then dredging it in flour to sear it, caused anaphylaxis yesterday… You can imagine why I’m pissed. I was alone, trying to wow my family with a simple comfort food dinner.  The simple act of prepping a roast for the crock pot.  One would think that wouldn’t be a lot to ask. I just wanted to make Jeff’s life a little easier. And the whole catastrophe began… Rash up both left and right arms and hands, gagging, coughing, could not breathe, headache, nausea, joint pain along with the overwhelming desire to sleep, and o’P.S. the hangover effect today….

I’ve got this. I’ve been to this rodeo too many times to count. I by no means take it lightly, but I don’t panic either, I’ve got it, take the meds, relax, text the important players, let them know I’m in distress, sit down and manage it. I’ve got it, no trip to the hospital, but it was close… So when the esteemed doctors from Hopkins tell me to wait till January for his wonder drug to work…. Well I hope he had a nice dinner; because mine almost killed me.  Oh and the best is when my 9yr old says,”mom this is not to my taste, I’ll just have the noodles please”… I just laugh, I mean really laugh… Because my whole day imploded just cause I wanted to have a simple family dinner from the crock pot!!!!!

This is life, the beautiful, the messy the unpredictable. No one wants this shot to work more than me, no one. My kids will have the last combined field trip to the pumpkin patch this year. My first and third graders are so excited, together on the same bus, the best pumpkin picking ever…and my beauty, asked me if I was going…. And the look on her face said it all… how when you are six do you wrap your head around the fact that mom lives in a bubble… She can’t chaperone a trip to the pumpkin patch if the temp is less than 70 degrees.

Oh, and from my field trip to Hopkins I added a few new issues that were not in play before…

I now have hives from cold, hot, evaporative, exercise, from dermographism, which means when I wrap myself in a towel the towel mark causes a hive, or bump myself on a chair, or put a blanket on my legs, the cable knit pattern causes hives… it is so ridiculous I can barely type it out… but again wait till January, to see if the miracle shot will work…

Harvard has no idea but he says “we” often when we talk, I know next to Jeff he has my back, I know he is invested in my health, I’m sure he is failing that course in keeping the wall up between patient and doctor. But F it, sometimes when things are bad you need that, someone who is pulling for you and up nights worrying about you… If not why did you become a doctor. He has never lost his objectivity, his professionalism, but we are an unusual doctor/patient, I’m well aware of that.

He takes one look at me and knows mind, body, spirit where I am. He knows when Jeffrey is tired; he worries when my kids are sick, because he will fix it when they pass it to me….

This doesn’t make him a bad doctor it makes him a human doctor. As Aristotle would have said, it takes both Art and Science. Medicine is made up of too many things we don’t understand…but the spirit is something we can’t miss…

Today, look in your world to make a little sunshine…but don’t make a roast!

Peace be with you, Kathryn