I have a 13 year old son. That means my life is filled with endless joys and many, many moments where I'm reminded that I'm the most annoying, stupid and did I mention annoying person in the world. It's enough to make even the most self-confident woman question herself.
Read moreTips for Friendships with Chronic Disease...
My life is different from everyone in my inner circle. My closest friends and my family don't have the medical struggles that I face. I won the medical lottery, I have been diagnosed with multiple severe and at times life-threatening rare diseases. In addition to managing other conditions that have sprung up as a result. Having a rare disease means my life and that of my family is never predictable. Which could make maintaining lasting relationships difficult. But, that has not been my experience.
Over the years, I have learned how to educate my friends and family so they know all about my health. While I never get a day off from management of my health; I don't want my relationships to be about my health. You have to find the balance between sharing your truth and still living life. It's a fine line, I want friends and family to understand why I may not be at my best without them feeling sorry for me. At times, I have tried to make light of some of my struggles with humor to put people at ease. I also work diligently to explain how hard it is to live in a body that has betrayed me and share that truth with honesty and love.
In October of 2014, my husband Jeffrey and I uprooted our family of four from the suburbs of Washington, DC and moved west to Santa Barbara, CA. I grew up in the DC area, my life, my family, my doctors, and my best girlfriends in the entire world live there. While moving from your support network is hard for any reason; it is especially difficult when you have developed networks of individuals that understand and love you with all of your health issues.
The move was the best decision for my immediate family. My health is better on the West Coast, more even temperatures. No more horrible cold winters and hot humid summers. Santa Barbara has less people, less traffic and a relaxed slower lifestyle which all agree with our family. The move came with sacrifices, leaving my support system and having to forge new ones. I have found that when you are honest from the start about your health it makes relationships a little easier. Everyone in this world has struggles, finding and maintaining friends will be so much easier when you up front share yours.
At a certain point, Jeffrey and I realized that we would have to tolerate the intolerable, and manage my health. I would likely
and never be cured. What was essential was within this space, I needed to find tools to live the best life in my body, to make peace with this life. I needed to strengthen the relationships with the people who could understand this. The ones that loved me at my core, not the girl who "used to" do activities with them.
I found that my "true" friends are the friends who wanted to "be with me" not "do things with me". The two are quite different. We often forget that underneath the label of chronic illness we are still ourselves. Each of us is still funny, smart, charming and the life of the party. Often just the party location may need to change. My life is filled with a circle of love, the best girlfriends one could ever dream. I still listen, laugh and be the best friend ever... It just means I'm on the sofa or on the phone, not drinking martinis at midnight. (I'll just add that most "healthy" mothers of two aren't doing that either!)
Here are my tips for sustaining lasting friendships while struggling with severe chronic illness.
My chronic disease is like having a perpetual toddler so plan ahead and have a back up plan
. My husband and I like to joke that we have three children, our two real kids and the perpetual toddler that is my chronic disease. Everyone has seen a toddler lose it in a public place; well some mornings I wake up and realize that is exactly what my body is doing to me. For no reason my body has decided that it is not going to behave today, that means it's going to be a bad day. We all love toddlers; but we all know they can be a hot mess. You never know when she is going to have a meltdown (i.e. a "flare") and toddlers are amazing in that they are fantastically unpredictable. Toddlers have personalities, charming, delightful but one wrong look, twenty minutes overdue for a nap and you are going to pay the price. My body does the same to me, too long in the hot sun, too long on my feet when I should be resting. My body will shut down and I can be in bed for days. So be flexible, be ready to change plans and know that you will need to cancel some activities on short notice.
How about a wine and cheese party in bed
: When was the last time you had your best girlfriends over for a glass of wine? When I have been in bed too long thanks to my health, I know I need to see my girls. The ones who make me laugh and will talk to me about the normal stuff--let's be honest the life gossip! One of my favorites is when I had a cocktail party in my bedroom. You got it. We had snacks and wine on my bed. They grab the glasses, they know where to find my wine, and carry it all upstairs. My girlfriends come over climb up on my king size bed. I sipped on some tea and they have wine (always in my Waterford crystal glasses) and eat cheese and fruit. We laughed and giggled for a couple of hours, they went home at seven happy to have been with me and I was sound asleep at 8. Jeff may have slept on a bed with a bunch of crumbs that night, but I slept perfectly, with a smile on my face for days.
I'm the queen of text parties
. How often does it happen that I feel great only to have my children come down with the dreaded stomach flu the one night in three months I'm ready to go out. My solution, text parties during movie award season. My besties and I send group texts discussing who wore what and who shouldn't have! It's the best. I have had one of my girls over and we are texting the one girl who was home with a husband traveling or a sick kiddo. It reminds us that no matter a friend's schedule or health, we can all still enjoy an evening together. You will also be shocked how often you laugh out loud when reading texts.
I still love lunch dates with my best girlfriends.
How about take-out lunch on your sofa. Who needs to sit in a restaurant all dressed up when your biggest accomplishment for the day is brushing your teeth and showering. I have a favorite Thai place that has the most amazing take-out. It also tastes just as amazing on my sofa in my sweats.
Movie night, coffee or brunch, what about yoga in your home?
My sister gave me a world class meditation class in the sunlight of my living room floor. Just the two of us, her voice and the best meditation warmed by the sun's healing rays. My living room has also been home to therapy sessions, impromptu yoga class and the best prayer group meetings.
Being a good friend also means being able to step outside your illness.
Being sent to bed is very different from choosing to spend the day in bed. I've lost track of how many times I have been sent to bed by my doctors.
Everyone has struggles in their life. Everyone. When you live with chronic disease it sometimes is easy to get caught up in your world of doctors and treatments and forget that your closest friends lives are still spinning too. I've been in bed countless times and taken some serious phone calls talking my friends through crisis. Sometimes you have to remind yourself that it's not always about you.
As the world's biggest type A, I love to have my make-up on, and my house perfect, but what I have learned is that no one really cares, when your best friends haven't seen you for however long. They really don't care... They really just want to be with you, to laugh, see you and to know that you are one day closer to being back up and running the world. You don't have to leave your home when you aren't at your best. No, you sometimes just need to make sure the key is under the door mat.
As always, the Divine in me bows to the Divine in you.--Namaste
If this post resonated with you, then I think you'll like;
Chronic disease is like a bad boyfriend
.
I love to hear from you, please friend me on
or
. Or send me an email using the form on the right. Only my eyes will see the email, so please reach out and share your truth. I will do my best to get back in touch. I love updates from all of you, so don't hesitate to send me a note with an update of your journey.
XO
Kathryn
PilgrimageGal
Photo Credit:
Tool One: LOVE Times Four...
Happy first Monday of Lent 2015
As promised, here is my first post in my Lenten Series. I have never done anything like this before; and to be honest, it's hard. I like to remind myself, you have to make yourself uncomfortable. You have to push out of your comfort zone. So Eeek, what nerve it takes to say, "I've got my life all figured out and I'm going to tell you how to fix yours." Anyone who knows me; knows I really don't. I'm just like you. Truthfully. What I have been told consistently is; Jeffrey and I share skills as a couple and as individuals that have allowed us to live a beautiful and happy life, in spite of our struggles. We don't often get down and when we have problems, we have the ability to right our ship. We of course maintain that a big piece is due to our faith life. We are resilient as individuals, as a couple, and as parents.
Along with an active faith life, I think the most important skill we try to teach is resilience. We need to own this and teach it in our daily life. We choose how we are walking in this world. We tell our Beauties daily; life is flipping hard and you have to have tools and skills to make it through the tough times. That's resilience.
As we work through the Lenten season, which traditionally is a time for reflection and sacrifice, maybe it's also a good time to share my/our ideas on compiling the tools to live in this big old crazy world and make you and yours more resilient.
What tools do you need in your tool box in order to build a resilient life? Over the next few weeks, I will share my thoughts on several of the tools, including; Love, Community/Tribe, Faith life, Sense of Humor, and Vulnerability. I will do my best to keep the posts topic based. But, this is new for me, so we will see how it goes. Let's start with the most important tool:
LOVE
We are built to love. Hopefully, you do it daily without much thought, to be honest. But, often it is just on the surface and superficial. We need to dig a little deeper.
We know in scripture there are four types of love: The Greeks they love BIG. A quick review includes the following types of love:
Storge: Brotherly love, familial love.
Philia: Friendship.
Eros: Passionate/romantic.
Agape: Unconditional/selfless love.
I'm not an expert in Greek; I'm not trying to offer a new thesis on the biblical uses! We are going to keep with the simple; Us Weekly/People magazine worthy definitions. Nothing heavy here! I'm good with easy. I'm not looking to footnote with scholarly definitions. I'm not even going to go into each one. I just ask you to consider how do each of the four touch your life? And I don't think you need to have all four; what I do believe is that you can never have too much!
No one dies thinking I wish I had loved less... I think everyone wishes that they had loved more.
That leads to the first series of questions:
How do you LOVE?
Are you a consumer of love or a generator of love? Do you make room for love? Do you close yourself to loves' invitation? Are you not good enough to be loved? (that is the lie so many say to ourselves.) Do you love yourself? Your imperfections, your weaknesses and strengths? Do you surround yourself with lasting relationships that include love?
There are no wrong answers here. It's the opportunity for a wee bit of self reflection. There is no scale at the end to rank your "love quotient".
Also for this reflection, please take Eros off the table and the Agape form of unconditional love for your children. If you have it, more power to you. But, you don't need it to live well, to have fulfillment or frankly to love fully. Keep the Agape in your heart and mind for the Divine's love for you, though.
The relationships that include service to others; that is Agape too. When you give of your time and talents to others, you serve, you are knee deep in others, wanting nothing in return. It is this ability to be selfless that fills your love bank. It does the heavy lifting in good times.
You have to put your money where your mouth is. You have to work on filling your love bank on the sunny days. When you are at your best. Do you send that text, do you call when you have five minutes (or 2 hours) when you're needed? I try my best, but can always do better.
I got one this week. I got a text that told me to "call me when you get up!" It was all that I could do not to call immediately at 1 am EST. Do you have folks that can count on you?
One of the most important lessons I have learned is that in my darkest, darkest times. There was ALWAYS someone who had it worse than me.
And that is the grocery store moment. Have you ever been in line at the grocery store at 5 pm on a weeknight gritting your teeth for the one flipping item you need to pull dinner together. Have you ever looked around at the folks surrounding you? Everyone has struggles, some are big and some are huge. For the love of all that is good in the world... Stop judging people. It's the surest way to cut an enormous hole in your love bank. Everyone has a "cross." Be grateful that you don't have theirs. And when you can, reach you hand out and offer it to another. It will make all the difference; I promise. Because no matter what my trial; I have always had someone who could take my hand and walk with me. Who loved me, even with all the Kathryness of it all. And that makes the journey so much more beautiful.
I have held out my hand so many times to find someone else holding mine. Just this week, I've been worrying about the blog. Is this really what the Spirit wants me doing. I guess you could say my love bank was running a little low. I don't feel my best, my Jeffrey is traveling. And what do I have to offer? Does it really resonate with anyone? And that's when the email appeared in my in-box; the email that made my heart sing, the one told me that I helped them, that my words "resonate FULLY" and that my writing is a "blessing to them." Now that is some good love and it was just what I needed at that moment.
So that is what this post is asking: How well are you loving? How well are you allowing love into your life? Who are you holding out your hand to? And have you welcomed, accepted and allowed yourself to feel the glorious light of someone elses love? I promise it makes all the difference.
When you love, it keeps your scales balanced, it keeps you giving and receiving love, and with a little love everything's easier. The good days are great and the tough days are tolerable because you can feel the love and you've got a whole bunch of folks holding you up!
If you feel that your "love bank" is more than half full, then take a second to pat yourself on the back. That's the first step to mastering this crazy thing called resilience.
Till next week...
Love,
Kathryn
PilgrimageGal
photo credit: Love via photopin (license)
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:
via
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Thanks (forward to my book)
The acknowledgement to my book….
So I have been spending a good amount of time thinking about my dream of writing a book… the book that would reach out to other folks who have struggles with their bodies and spirits…
So in an attempt to circle the wagons on all the self help books that say lead with certainty… I’m writing the forward to my book first… here goes:
It not only takes a village it takes a team.
To Harvard (a.k.a. Dr. K) for the sleepless nights, the million phone calls, the amazing care, the kind heart and the trust in medicine as both art and science, you have gone above and beyond what one doctor should ever have to do to try and get a patient healthy. You are the truest and best example of everything a doctor should be and I am eternally grateful every day that you are mine. Thank you seems so insignificant…
To Dr. F., you are the doctor every girl needs, you are an amazing doctor and mother. You understand how difficult it is to wear both hats and as a patient I always feel that you “get it” completely. Thanks for understanding what I mean when I tell you I can’t get off the couch…. You are a dream.
Then of course, a big round of thanks to all my family, friends and miscellaneous support staff for keeping the trains running semi-on schedule.
One of many examples is a recent visit from the best part of my extended family. A shining star was in town visiting me this week. It’s kind of hard to explain, but my mom was engaged to Shelly and Laurie’s Dad… the marriage never happened, but I scored some amazing soul sisters. I was 15 and Shelly was 21, the first time we met, and we just clicked….now we are a long way from 21, but we have a very special and enduring relationship….I love these girls… and Shell just rolled in Sunday and took over, she made tea, cooked, explained subtraction with m&ms, held my hand when I was nauseas, did yoga, made PB&Js for the kids, and we walked and talked….
But, more than anything, I just basked in her light… Don’t you just love the girls in your life who make you better, who see you at your best, when you are not sure that you are, and just love you for all the right reasons… Shell is my sister… We share the same view of faith, of God, of his endless light and love, and his healing grace. I find when I’m with her the toughest weeks aren’t so tough. Shell is a gift, a walking talking gift, she has the grace of the spirit and it shines through… and laughs when I drop the F-bomb.
We were riding in the car and she was telling me this embarrassing story about her, the tango, a dear girl friend, her delicious man, Italy and a lot of wine…. We were at a stop light, in my smoking hot grey beat up Honda mini van with booster seats, drinking our grande, skinny single shot vanilla latte and I was laughing so hard I was coughing, like the ugly cough, tears pouring down my face and we can’t stop. And this very serious looking girl in the mini van next to me with very expensive sunglasses gave us the evil eye… which just made me laugh all the more, cause life is too hard not to laugh until you cry, given the opportunity…
Now all that said, that car ride lead us to the parking lot at Harvard’s office to pick up yet another stupid prescription, this time for my heart… kind of ironic… I’m laughing as I type this cause of this wonderful moment, picturing my girl dancing… and us laughing in the car, well it’s just too much, and exactly what I needed.
When I get permission to tell the whole story I will… it is just too funny… I mean, shut the front door funny….
So this is our life, we make it work, we laugh, lord how we laugh…. As the wise one Tim Gunn tells us, “make it work”.
Lord Tim, I’m trying!
Namaste my friends, Namaste….