Advocate Becomes the Patient: My Diagnosis of MS

Food allergy advocacy has been a part of my life for 11 years. In those 11 years, I’ve talked a lot about RESILIENCE, the capacity to recover quickly from difficulties or exhibit a type of toughness. My son and I have spoke a lot about this word as he struggles with many health challenges: food allergies, asthma, seasonal allergies, acid reflux and polymorphic light eruption. One of the ways that I taught him to be fearless in the face of adversity was to say, “Everyone has something.”

While my son may have experienced a heavier load than most in his short life, it’s true we all struggle with something. Some people have physical or mental health challenges, while others struggle with not being athletically or academically inclined, etc. The list of what one can deal with can be quite lengthy.

Just like you, challenges have not been foreign to my life. I’ve dealt with an array of struggles like infertility, multiple miscarriages and always by my son’s side helping him to brave his health issues.

Everyone has something.

My new something is Relapsing – Remitting Multiple Sclerosis (MS).

After struggling with a variety of more severe symptoms for six weeks, I was finally diagnosed with MS on February 13, 2017.

As much as it was a shock to my husband and me, it really wasn’t. We quickly began to piece together the last couple years of my life and it all began to make sense with symptoms ebbing and flowing during different times.

My initial inclination was to retreat; closing myself off for what has been well over five weeks being introspective and defining what this means for me and my family. The diagnosis of MS is not a death sentence, nor does it mean being wheelchair bound. Thankfully, I’m considered to be a mild case where I will live with the disease and manage day-to-day symptoms and limitations.

I’ve started on injections of Copaxone® which is not an MS cure, as there is no cure. The medication does not manage any MS symptoms rather its purpose is to hopefully minimize the number of MS relapses that could prove to be debilitating. In addition, I’ve started with a personal trainer to strengthen my body and address balance issues. Life is a little slower these days, as I begin to understand what my energy limitations are and how much is too much ensuring that I don’t add to my fatigue. I have good days and bad days, but I had those whether I had MS or not, so I’d say I’m doing very well.

I can’t thank my close family members and friends enough who have been of great support over the last 12 weeks. The calls, texts, cards and emails have truly buoyed my spirits and made me realize that this too is just another bump in the road of life.

Most of all, I’d like to thank my husband Demetrios. This May will be our 17-year anniversary. Through those years we have celebrated too many happy times to count and faced challenges side-by-side buoying one another along the way. While we are often blindsided by life’s challenges that take our breath away, that cause anxiety thinking about the unknown, one thing has always been unwavering – our love, commitment and support for one another. To quote Demetrios, “This is our life together, nothing will ever change it.”

Last, one of the largest decisions in all of this was…who will I tell? Do I keep this all to myself? How far out do I tell of my family and friends? Recently, I had a person with MS follow me on Twitter. In her profile, she listed herself as an MS Warrior since 2012. I sat with that phrase ‘MS Warrior’ for a few days and I even bothered to look up the word ‘warrior’ in the dictionary to help define what it means to me, if anything.

A warrior is a brave and experienced fighter.

I am a brave and experienced fighter of many things…

Infertility Warrior
Miscarriage Warrior
Food Allergy Warrior

And now…

I am an MS Warrior.

Create A Support System You Want and Need

Create a support system that you want and need sounds like an enormous undertaking, especially in the sometimes-harsh, female environment of snobbery and cattiness. I have wondered, is there room for friendship with women who are self confident, yearn for a true connection and mutual support through all phases of life while making beautiful and fun memories together?

Creating a support system is challenging, but can be done.

Who wouldn’t want friends like the women from Sex and the City?! They laugh, cry and fight…but are always supporting one another through it all.

I’ve spent a good portion of my life trying to find my Sex in the City version of best friends. I’ve had plenty of friends in my life; but I’ve never had the feeling, deep in my heart that these girls were here to stay. Many of my friendships felt temporary, like a new tube of mascara, short-lived as it clumps, flakes and dries out in due course. I want women who, despite our different natures, find one another inseparable as we live out the storylines of our everyday lives.

Now that I’m in my, ahem, late 40s I can finally say that I feel like my Carrie, Samantha, Miranda and Charlotte are found…and I’m grateful that there are more than four fabulous women that have agreed to take me on as friends for life. ; ) A friend of mine (MK are her initials) once said to me, “I’m in this for the long haul.”

Many women have confided their difficulty in developing close friendships. I’d like to share how I managed to create a support system of beautiful women.

To create a support system means examining what kind of friend you are.

To have good friends, you must be a good friend. Be sure to clean up your clutter in order to create a support system you want and need!

To have good friends, you must be a good friend. Be sure to clean up your clutter!

“Maybe the past is like an anchor holding us back. Maybe you have to let go of who you were to become who you will be.” ~ Carrie Bradshaw

I read this interesting entry from Karol Ladd several years ago and it has stuck with me ever since, The Seven Qualities of a Good Friend. Take the time to read her entry as it’s a great way to examine what kind of friend you are. Be sure to commend yourself for your greatness and clean up the clutter that is preventing you from being the very best you can be. To create a support system, this is the first step.

Be brave enough to ask for what you want and need.

“Be bold enough to use your voice, brave enough to listen to your heart, and strong enough to live the life you’ve always imagined.” ~ Carrie Bradshaw

This one is a toughie for many, including myself. Recognize that it’s ok to ask for help, a listening ear, a closer friendship, an afternoon or night out on the town. If you don’t ask, you won’t get and if you don’t get, you’ll just continue to feel unfulfilled.

My parents are deceased, my in-laws are out of state and elderly, my brother is in California and my sister is in Massachusetts so family support is not readily at my fingertips. I had to start asking a few of my close friends if they would be my family, aunts to my boys or I would continue to feel isolated and lonely. This wasn’t easy for me…but the positive end result outweighed any anxiety I had in putting myself out there.

When you ask for what you need, be sure to clarify what family means to you and how you want to create a support system of mutual comfort. If you’re really nervous, use your sense of humor to deflect any discomfort, “I would like to have you as my family, not in a Jerry Springer way, but more along the lines of Oprah.” You get the same point across, yet explain there’s no crazy to be had. ; )

Be vulnerable enough to share.

“Maybe we can be each other’s soul mates.” ~ Charlotte York

Be vulnerable enough to share your life with others. It's the first step to create a support system you want.

Be vulnerable enough to share your life with others. Letting people in is the second step to create the support system you want.

Life has given us all a bunch of lumps along the way. Many times these lumps are truly blessings, becoming a part of our fabric and forming us into who we are.

Our ability to be vulnerable defines the closeness of our friendships. Check out this entertaining, funny and candid TED Talk from Brené Brown, she is a personal favorite of mine, on The Power of Vulnerability.

Remember after you watch the 20-minute video: We are all storytellers. We are all worthy. We all have the ability to fully embrace vulnerability. We are enough. We all want to create a support system.

Friendship needs more than a 90-minute download.

A BFF and I excited for our trip to Seattle. Create a support system by traveling with your friends.

A BFF and I excited for our trip to Seattle.

Friendships don’t magically last for forty years, you have to invest in them. ~ Carrie Bradshaw

I spoke at a conference in Seattle recently and one of my Sex and the City girls agreed to travel with me and be my Karen, Grace’s personal assistant from the show Will and Grace. In my 46 years, it was the first time that I had ever traveled with a girlfriend. In addition, it was the first time I had left my children since my eldest was 18-months old, he’s now 10.

The trip to Seattle made me realize, there is so much more past the 90-minute download. Whenever I would meet up with a friend for lunch or dinner, shopping, a movie whatever…there’s this 90-minute download that always happens to get one another caught up with what is happening in each other’s lives.

After the 90-minutes, that’s where your friendship’s story begins…

You laugh, you begin to enjoy yourself in a different way and a bond forms that one cannot experience in the traditional 90-minutes. Circling back to my Seattle trip…there were memory burns made on that trip. We were able to get outside of our roles as mothers, wives, cooks, bill payers, and of course, Queen of the Toilet Scepter. We were able to step outside of these roles and become women, our truest selves who were travelling and fulfilling our own needs, talking about what is important to us and just plain being silly.

For those of you with young ones yet, I know it sounds like it might never happen…but it will. It did for me finally at 46! Speak with your husband or partner on how to create this kind of opportunity, it doesn’t have to be a travel trip but even just day away with a friend or friends. To create a support system, you need to invest time. Continue reading

Top 10 Ways to Reduce Summer Stress

Top 10 Ways to Reduce Summer Stress and Keep Kiddos Engaged

You’re busy thinking about how to reduce summer stress as another school year is draws to a close. While the first day of summer isn’t until June 21st, technically for anyone who has school age children it starts this month. For me, it’s Friday, June 5th at 3:55 p.m., the moment when those two energetic boys finish their kindergarten and third grade year and meet me in the school lobby. We will have 13 weeks together this summer…for better or worse, in begging for electronics and playing board games, in sweet never to be forgotten moments and sibling heated arguments, to laugh and to cry, till school starts again on September 8th. : )

reduce summer stress - Fun with my boys at Millennium Gardens, Plymouth, MN

Fun with my boys at Millennium Gardens, Plymouth, MN

By all means do not interpret that I think the summer will be bad, rather I’m looking forward to time together with my sons and making those memories that will warm my heart far after they have left the house, or are living in our basement. ; ) And yet…when my children are in the throws of a fiery argument of “Did you just look at me?” I think…isn’t it bedtime?

When the difficult times roll in, I always have to tell myself, “I’m normal.” I’m like every other parent out there, we’re praying for an abundance of patience, the ability to temper our temper and establish boundaries with our kiddos so that we strike a balance between family fun and our ability to administer a daily dose of self-care to maintain our sanity.

Speaking of sanity, I’ll get to the point of this entry and provide my “Top 10 Ways to Reduce Summer Stress and Keep Kiddos Engaged” this summer. This is my plan to help manage my stress and keep my boys active, engaged and enjoying this novel thing called “down time.”   : )

  1. Prevent Brain Drain During the first week off from school we head over to the Lakeshore Learning store and grab summer reading and math workbooks. Establish time for workbook, daily or a minimum of four times per week. I always expect that each workbook can be completed prior to heading back to school. Reduce summer stress by setting the expectation that workbook time is finished before any screen time can be enjoyed.
  2. Schedule Activities We live in a society that fully supports and pressures parents to over schedule their kids, so when you’re looking for activities to participate in, make sure that it’s not too heavy of a schedule for them or you. Remember, you’re the one that has to chauffer them to all of these activities, so reduce summer stress by allotting so much time for scheduled activities. ; )
  3. Quiet Time or Downtime Shhh…it’s really important that children know how to self soothe and self entertain. Ensure that there is routine downtime so that they can determine how to spend their time, develop interests, problem solve their own boredom, or do I dare say it – GASP – take a nap. Downtime is a very important element to reduce summer stress.
  4. Fun with Friends If your children are of elementary or middle school age, you’ll want to schedule some fun time with friends. That might mean some time at your local pool/beach, running off physical energy and a picnic at the park or outdoor games of volleyball, croquet, Twister, bocce ball, Chinese jump rope, water balloon fights, etc., at your house.
  5. Create Bookworms Reading not only helps to pass the day, but it increases vocabulary, comprehension and fosters a love for reading. Select a book together and take turns reading it or establish an independent reading time so that you too can sneak in some self-care time. Select a special place for your reading time, under a shady tree, the porch or nook.
  6. Lions, Tigers and Bears Oh My Check out the local attractions where you can spend the day with your kiddos learning, relaxing or having fun! Some great ideas can be found in this article, “100 Things To Do With Your Kids This Summer” or check out your local museums, amusement parks, waterparks, parks, zoos, theater, historic landmarks and other attractions. Perhaps planning something once or twice a month is best, keeping costs in mind and not encourage a bad case of the gimmies with your children.
  7. Workday Yes, we all have to do it. Laundry, dusting, vacuuming, washing the car, mowing the lawn, grocery shopping, etc., doesn’t happen on its own. A workday creates ownership, responsibility and establishes each person’s contribution to the household and family unit. To reduce summer stress also means you being able to be freed up from your household duties.
  8. Rainy Day Rain is bound to show up in the forecast and having a list of rainy day activities is a definite must, i.e., movies, cook special meals, bake, board games, house hide and seek, crafts, puzzles, etc. are all possibilities in passing a dreary day.
  9. Craft Day Whether your children are wee young ones or of elementary, middle or high school age, there’s nothing like a good craft day to connect and get in touch with your creative side. While there may be some moans to start, not too soon after most will enjoy being together and making family connections.
  10. Parents Remember to Care for Yourselves In the middle of all the mayhem it’s sometimes difficult for parents to remember they have to take care of themselves too. If you’re taking care and giving all the time to your children, you’ll eventually find yourself depleted, a bit grouchy and short on patience. I’m very lucky to have a husband that recognizes that I need my downtime occasionally. I’m not certain he recognizes downtime for himself, so I push him to do things that will reenergize him. So pick up a book, go for a walk with a friend, exercise, or garden – whatever you find enjoyment in that recharges you. Additionally, don’t forget to get a babysitter. You and your partner need time to reconnect with each other and your friends.

I’ve shared my view with you; please leave a comment and share your thoughts with me.

Happy Summer!
Kristin

Every Day is a Fresh Start – A Clean Slate

I sense my eldest son is working on a marvelous Mother’s Day gift in his Technology class. Technology is a fancy word for computer class.

First he asked for a picture of me in a jpg format – checkkristin-color-corrected-cropped250

Then I had to answer a few questions:

What is my job title? – Mom, Queen of the Toilet Scepter…ok I won’t tease you anymore I just said Consultant / Licensed Trainer ; )

What do I consider my greatest accomplishment? – Being a mom to my two beautiful boys.

What is something that a say all the time? I put that question back in his court…what do you think I say all the time?

I wanted to know what he thinks I say all the time. I wanted to know what he remembers. We mothers say so much that we wonder what is retained. I realize that was a risky question to put back in his court. He could say, “Eat your vegetables,” Clean up your room,” “Will you two stop arguing with one another,” “Did you do your chores?” “Is your homework done?” While I know it was risky, I had some confidence he would remember something more important, more philosophical…something that’s a tool for life.

CleanSlateHe was very proud of his choice, “Every day is a clean slate.”

I hope he always remembers that…no matter how difficult life can be…every single day is a clean slate for all of us. There’s power in knowing that things can always be turned around, that second chances are humbly given to each of us and that trying our very best is never out of our reach.

How will you spend your clean slate each day?

Who is Your Safety Net?

One of my fondest memories of last summer was spending time at our best friends’ cabin. We fished, ok…I watched my boys fish. We ate what seemed to be every two hours; that’s cabin life for ya, where all is free and well with the world. We built a fire and made smores. The cabin is the simple life of love, laughs and true friendship, and for me, true family.

The last few months have been very difficult since my father’s passing just before Christmas. Those life experiences call you to think about how everyone needs a safety net in life, a true family. Patrick and Catherine have been that family to us. They are the net that makes us feel so secure, so unconditionally loved that we can share anything on our minds, a happiness, a hurt and travel life’s miles together shouldering the fun, the sun, the storms…every step of the way side-by-side.

Hammock at the CabinThe safety net made me think of the hammock that my boys and their Uncle Patrick swung in, under the moonlight, gazing up at the stars and listening to the sounds of the night.

My husband and I sat on a small dock a short distance away and could observe our boys chatting away with their Uncle Patrick about the day’s events, their simple happiness and peacefulness made our eyes well.

I hope our dear friends, our family, know how much they have been our net the last few months. How much we enjoy their spirit, how happy they make our boys, and most importantly, how much their happiness means to us.

Everyone needs a net. Who is your net?

Please share with me a comment or two about your net. : )

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My Stress Mirrors Seinfeld

A high school friend of mine and I make a point to talk on the phone when we’re stressed. Not because we’re wanting a nice ‘ol fashioned teeth gnashing session, but because we try to make our worst situation into our best stand-up comedy routine. I know, sounds weird doesn’t it, but I’ve always found humor to be the best way to handle my stress.

Sometimes I feel like my life is a Seinfeld episode, you know, the show all about nothing. I seriously find myself in awkward and stressful situations that are straight from the Seinfeld files:

Young woman lying back on a couch talking on a mobile phoneI once had to speak to an employee about NOT having sex at work. George Costanza had sex with a cleaning woman. Remember his response, “Was that wrong? Should I not have done that? I tell you, I gotta plead ignorance on this thing, because if anyone had said anything to me at all when I first started here that that sort of thing is frowned upon… you know, cause I’ve worked in a lot of offices, and I tell you, people do that all the time.”

While a relative was visiting, who was famous for racial slurs, I worried that a derogatory comment would be yelped when a friend of mine (who happened to be of color) came to visit me. Remember Kramer and the wooden cigar store Indian (a stereotypically demeaning portrayal of the Native American).

Last, but certainly not least…my husband and I watched a friend of ours double-dip a chip at one of our newly married, annual Christmas parties. We were thinking what Timmy said to George that day, “Did you just double-dip that chip?”

While we may feel like a Hoover Wind Tunnel is sucking the very life out of us, having a friend that can push you to your comedic limit is the best cure! Many a nights I crawl in bed and thank God that I have several friends that can access that type of crazy to keep each other laughing even during the toughest of times.

XO to my friends Michelle, Catherine and Quita!

I shared my thoughts with you, please leave a comment. : )

To Be In God’s Waiting Room: The Passing of My Father

My father was called this morning, he no longer waits. My feelings are bittersweet as I’m so pleased that he no longer suffers, but like most, I wanted him to stay with me and somehow miraculously be healthy again. I’m so glad I got to speak with him yesterday and say those oh so simple words, I Love You. Sadly, I already buried my mother 14 years ago, so these emotions are all too familiar, my heart is heavy with grief and I feel so  ~ alone.

One might ask, how can you feel alone when you have a great husband and two beautiful sons as your family? Let there be no confusion, I love my family and my life; but there’s a cord that is struck when a parent dies, you can’t help but feel ~ alone.

250dadMy Dad was the last connection…to my beginning.
He’s half of the duet that made me, cradled me, taught me to walk and talk, instilled my morals and values, and always told me how proud he was, sometimes directly, but mostly in subtleties.

My father was in God’s waiting room for three and a half years. He never had the chance to bounce back from postoperative cancer complications and later his cancer returned. It was difficult to watch him struggle, for a Dad is always the strong one, physically and mentally. He never complained. He was the consummate problem solver and negotiator for work challenges, having been in management and worked with unions for many years. He was the handyman whom I lovingly nicknamed Earl. At every visit to my sister’s or my home he would survey the land and see what projects needed tended, roll up his sleeves and dive right in. Continue reading

Different Lives Often Have the Same Crossroads

My BFF took me to a Women’s Gala last week. There was a very talented singer and storyteller that was the highlight of the evening. It was such a wonderful experience to be with my friend, in fellowship, in quiet and in opening my heart to the season.

There was something magical about not having to speak for an entire hour. I know that may sound weird, but my life consists of a lot of talking. I’m talk’in to my husband. I’m talk’in to my sons: they LOVE to talk…from the moment their little feet hit the floor to the last flutter of their eyelashes into dreamland. Then of course, I’m talk’in in my work.

The act of being still, present, open and listening to someone speak about their life, their experiences, their learning moments brought quiet reflection about my life: my loves, my storms, and even the storms that are always with me, quietly rumbling. It made me realize that all of our lives, each unique like snowflakes, have many of the same crossroads.

This holiday season, spend some time listening; take the time to see commonalities with one another. It’s how compassion is created. It calls us to be outside of ourselves and to consider what we don’t always understand in others. It’s what opens our heart and creates authentic friendship and community.

Squelch the Gimmies: Teaching Children to Give in a “Me” Society

Not too long ago, I saw the movie “The Descendants.” It covered numerous heart-wrenching topics: infidelity, a tragic accident, end-of-life issues, smart-alecky children and an absentee father. However, much like life, it was sprinkled with many beautiful moments, one of which was watching a father, played by George Clooney, awaken and find his true self. Be warned, should you decide to watch this movie, it would be appropriate to arm yourself with a box of tissues; I dabbed my eyes throughout the film.

There’s a quote from the movie that made me think about my sons and a topic that I seriously ponder on a regular basis. How can my husband and I raise strong boys who strive for not only what they want in life, but also what they want to give in life? Here’s the quote:

“Give enough to your kids so they can do anything, but do not give them too much so they can do nothing.” Continue reading