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Working together to achieve wellness...
When you are managing a chronic disease or suddenly diagnosed with a major health crisis, it takes more than a village to keep you healthy… It takes a tactical army; of friends, doctors, therapists and great cooks…
My therapist is a Sister of the Holy Names, so in my case I have a therapist who is an expert on medical issues, families with chronic disease, but she is also my unofficial spiritual director… So in one pick I scored a two-fer, and she is my rock next to Jeffrey. She gets life so beautifully and cuts through the foolishness, is action oriented, and gives great hugs. That is a double win in my book.
She gave me a lovely compliment this week; she told me that she didn't know anyone who had assembled a better team… Which made me think, how do you assemble a great team?
Assembling this team has been a process for years, but this core group has been solid for several years… The key to my team, they all understand two fundamentals of my wellness:
First: My husband Jeffery is my whole world and our children are our life
. We were married 10 years before we started our family. We grew into our marriage, I had to grow-up and then we were ready to start our family. And it was the best decision we made and as a couple now married over 20 years; our choices work...
I don’t want someone to just make me feel better; I want someone who demands I get better.
Big difference in this statement… It requires both action and commitment.
When you identify what you are striving for, not just feeling better, but true wellness, it becomes tangible. All of my goals are based on these principles… Medicines, procedures, tests, appointments… How many flipping times have I had to give my medical history… But, it’s a step, a rock we turn over, it moves us down the road… It's more training for this marathon we call life.
Every step is moving me towards wellness, I believe that… I have a clear idea of what wellness is…. Will I be the girl I was before all this, NOPE… Never again… I will have limits…
What I am is fearless, and unbreakable in spirit. Because every person who is welcomed onto my team gets instantly my two guiding principles… It’s that simple… If you are not on team Kathryn, you are lovingly retired and not welcomed back.
You learn that chronic disease is designed for the TYPE A… We are the only ones who will not curl-up and die under the weight of the pain... We learn how to survive and we flourish… My Hawaiian girl stopped by yesterday and we had a lovely chat, while our girls worked on their fairy garden, she said that she loved my “spirit” (so many compliments in a week.) But what she loves is my optimism… If you don’t have faith in wellness, you will NEVER EVER be well…
Many of these team members/players need whole posts on how to select them… Today I'm going to focus on forming the team:
you need one, in my case two, Go-to doctors… The doctors who get you, know who you are, your priorities, your symptoms, tell you the hard truth and see you as a person not a disease. Now here is the thing, this is a relationship and like all relationships they require a lot of work, respect, and a ton of humor.
TIP: You know you are in the presence of a Go-to doctor when they say, “I’m out of answers or I don’t know, I've never seen this before… But, I know a person...” And then: They make the call, send the email, get you the appointment.
Go-to docs have two jobs: manage your day to day and be the conduit for outside help when they run out of answers. My Go-to’s are not my primary physician, I still see her once/twice a year for check-ups, but my Go-to are specialists. One is an immunologist/allergist the other is a pulmonologist/critical care. They are the ones who use their relationships to find me experts on my health issues, they call in favors, make demands of colleagues and fight to get me access to the best the world has to offer.
And I LOVE my Go-to's… My Go-to lost some points and colleague's support by going over the heads of some folks to get me “in-to” the guy she wanted me to see. That is the amazing support of my Go-to doctors... They go above and beyond, just to help me.
Your therapist is the other leg on a three leg stool, your Go-to’s are one leg, you and your supports are another, and your Therapist, well mine stands alone…
Because she is soooo important.
Picking the right one is possibly the most important member of your team, she will be with you for a long time, she knows all your issues is often your co-pilot on sorting things out.
are very simple… I don’t want someone to hold my hand and dry my tears; I want someone who is in-it with me to get answers.
Simple also means… Direct. You should leave every appointment with a to-do list, homework, what you need to get done. You need tangible goals… If you have a therapist that wants you to just smell the roses and pass you tissues… You need to run like hell… You are much too busy for that brand of foolishness, time is not your friend, you have to have urgency
to find wellness. You need to have action oriented steps, plans, goals objectives.
Sometimes my homework is to rest, take care of my body… Other times it is to get my team mobilized for the next hospital and next specialist. She is often the sounding board to my new ideas, plans and goals. She is also the one who helps me shape my "new reality" of what wellness means, how you live happily in the brokenness.
Your therapist does many things, she is an impartial viewer of you…
Sometimes she has a better gauge on where I am; than I do… I get so mired in my own stuff; and she helps me sort-through it. Now listen, I do believe that therapy is vital when facing a chronic or serious disease. I have had frank conversations with both my doctors and my therapist to say, “listen if I’m doing something psychological to make myself sick, then we need to find that too… because I want to be well.” You have to be willing to look at every aspect of your life. Likewise you want your therapist to say, “Kathryn this is not in your head, your body is broken, we will find answers, you are doing the work.”
That is demanding wellness, not just making me feel better…
and Spiritual Guide, your own personal Yoda:
We all need a Yoda, the person who guides us to the “Force” and leads you to your spiritual center. I have been in a women’s prayer group for eight years, drop in on another, I practice yoga, meditation, along with an active prayer life. Also, I have a life-long family friend that I call regularly to talk about matters of faith… And then I have my therapist. Your mental health is equal to spiritual heath in all matters … You need to constantly grow this side of your life…
You must find peace in the foolishness….
a spiritual guide is one of the best investments and she is easy to find… All you need to do is take an inventory of the folks in your life. The person who is always at peace in the hurricane of life? That is where you start… Ask her how she does it? Where does she go? Who does she talk with? Chances are high she does not do this in isolation. And if she does, well she is a saint. So hold on to her!
In the Catholic church, priests and nuns have relied on Spiritual Directors, a kind of spiritual teacher/guide. The job of a Spiritual Director is simple--help you draw closer to God. You can find both formal or informal guides. For some, you’re therapist may be able to provide you with a two-fer, like I have, or you may find that your minister or other faith leader may provide you with the tools to fit your life and lifestyle…
Please, don’t over look this part of your team… Spiritual Direction allows you to grow in so many amazing avenues. When you open the door to this idea, it won’t take long to find your path… You may find that when you are open, the guide will appear.
Your Three AM call
… and your fairy godmothers:
This job falls on a several different girls in my life. This job is the one, when you are really sick you call this friend at 3 am.... They come running and my True Love takes me to the hospital.
This friend comes over in pj’s and sleeps with your kids when you are admitted. She makes pancakes in pj’s, watches tv, and has unlimited hugs, loves till the day or night gets sorted out.
This job also requires creating out of thin air, carpools, play dates, AND world class entertainment, when I was too sick to lift my head.
My list also includes my extended "created" family…. This is for the non-biological members of my family, who are just as important as our "real" family… Jeff and I could not survive without this branch of our clan…
They are most evident in my
The fairy godmothers are the women in my life who are my soul-sisters, who drop their very busy lives, jobs, spouses and roll-in and make the magic happen… They come when my True Love travels, they nurse me, Loooord they feed me sooooo good, and how they love my beauties… It makes me weep just talking about them...
Fairy Godmothers sprinkle the fairy dust... And I rest, sleep and curl up under their beautiful wings… I get to bask in their sunshine. No one has better Fairy Godmothers than I do, and my kids about die when my A-listers roll into town… These women, are the best of the best…
This year we were blessed to have Norah’s godmother Jane and my stunningly beautiful soul-sister Shelly, both came for a week when I was too sick to do much of anything. What makes their arrival so special is they make the time beautiful, fun, seamless and my beauties forget that I'm sick, Dad's away and life is hard... My FG's have known me so intimately for so long, that they can run my household the way I want to and that creates calm and fun…. Which makes it all work for everyone… And it’s a huge help for Jeffrey, because he doesn't have to worry about us and he can drink a beer, watch the game in his hotel and work.
So this is what I mean when I say I have a small army… All of this would be nothing without my Jeffrey and my Mom, who almost daily drops life to help her baby… I am constantly surrounded by my Army of team Kathryn… All searching for the goal of wellness…
In my upcoming posts queue, I will discuss how you find your doctors… The supports at school for my kids... How communication with your team is critical, and more on spirituality/faith, my thoughts on what wellness really means. I would also like to talk about what causes me stress as a Mom with an autoimmune disease... All that and so much more as we roll into spring and summer…
If you have any ideas, suggestions or questions, please leave a comment, or don’t hesitate to contact me directly via email at pilgrimagegal "AT" gmail "dot" com.
As always, thank you for walking along on this Pilgrimage with me...
The Divine in me bows to the Divine in you...
Kathryn 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 and enter your email address.