Sick Babies and the Pink Candle…

Sick Babies and the Pink Candle…

Of course I know he is no longer a baby, but my children will always remind me of their birth…so when they get sick, I become the ultimate mama bear. Maybe it is because I know how awful it feels to be sick… I get it, it is familiar, and I don’t want them to suffer with illness too… But my children’s illnesses make others worry as well… While I am comforting, handing out popsicles and motrin, rubbing backs, emptying trash cans of puke, I’m what they need… (Dad is awesome too!)

But, while I go about the routine of just being Mom, everyone else worries in the back of their minds, “is Kathryn going to get it.”  And if she does, how bad will it be and how long will it last…

The worst times are when I’m too sick to get out of bed to care for them, MY BABIES!  I’m their Mom… I know everyone gives me an example of other parents who can’t be there, Moms in the military serving abroad, Moms on biz trips… I hear all that, but it still doesn't fly.  I want to be here, present, caring and loving… The good news, the kids will be healthy by Christmas…

What I try to remind myself is that it’s just a bug and in less than a week they will be up and running and I do them no service if I completely wear myself out, and then put myself in bed for weeks… Sometimes I just have to breathe and know that my hugs and love are good enough, and they want me dressed and not in PJs coughing up a lung…

I am reminded of the Blessed Mother Teresa, who once said, “We can do no great things, only small things with great love.”

So as the pink candle burns bright this third week of Advent, remember that sometimes doing less is more, and sometimes not doing is as important as not overdoing it!

Namaste…

Does The Sun Ask Itself...

Does the sun ask itself…

So my guilty pleasure, nothing to do with my faith, but the marketing merchandising part of

myself… The materialistic part of myself, the part that loves stuff…. Yep that girl, high heel ponytail girl! LOVES, like crazy loves TKW (That’s Ted Kennedy Watson). He owns three shops in Seattle.

First and foremost we share a love for the same champagne, Ted writes a fantastic blog, scored a great book deal to which I can’t wait to  pay full price to delight in all things Watson Kennedy, and he gets write-ups in House Beautiful and Elle Décor. He loves Ina and knows her, really like they talk and what not. (Ina is the Barefoot Contessa  to those of you not on a first name basis with her). I love Ina and Jeff loves her too, but he is also a fan of Giada

Listen, can I digress for a second..., I love Giada, but Jeff L.O.V.E.S her, and that’s why I'm such a fan of Ina, she eats, drinks and doesn’t do as much for Jeff… we have tons of Ina’s cookbooks and Jeff regularly makes something delish from them, but Giada, see where this is going…can we talk about Giada’s breasts for a second, I mean good lord they are beautiful… I will never, not in this life or the next have her body, she was on the Today show with Martha on Thanksgiving morning… she looked like an angel next to Martha…. And she was so smart the way she deferred to the Marthaness of it all. Anywho, back to TKW…

So, Jeff occasionally needs to travel to Seattle and I always beg Jeff to stop by one of the stores when he’s in town.  TKW is my retail nirvana. To torture me, when he is super proud of something he has bought, he has it wrapped and places it somewhere in the house and just smiles like a cheshire cat… he did that for about three days with my 10 year anniversary band. I mean really would you have done that to a materialistic pony tail girl! So right now is a sweet little box on my mantel from TKW, waiting for Christmas… Now in that box could very well be the receipt for the lovey little card he bought at the store, but no matter, I got a gift of my very own from TKW. It is the best treat ever… 

So in addition to the box on the mantel, Jeff gave me this card that he picked up too. Jeffrey the man of few words, loves the written word, so when he writes something down he means it, and when he gives me a card the words really spoke to him…

I love this card. Despite everything I have discussed, and as proud as I am of all my accomplishments, I still struggle with whether I’m good enough… 

I love the quote from Andrea Dworkin, because it reminds me that the sun is just too busy to be worried about it… it just “burns and shines” and really that’s all we need to focus on... 

Are we burning and shining for our nearest and dearest?  Are we shining the light of our faith?, our truth of who and what God made us to be?, are we loving our beloveds in the best way?, are we speaking the truth of the wrongs in our family (be that our nuclear family or that of my beloved church) sans consequences?, are we burning the truth?…

During the season of Advent we sometimes forget, that it is a season of waiting... Waiting for the birth of Christ… and while we hustle and bustle, and drink our cider and champagne, we need to remember to pause, to wait, and to burn bright and shine… 

To not be distracted or worried about the small stuff...  

We can all use a little more heat and light...

Nanmaste

Obi-Wan and Other Unrelated Topics...

Saving the universe, Obi-Wan and other unrelated topics….

I’m currently in recovery, the Thanksgiving weekend nearly killed me. I was on the couch from Friday till well I’m still on the couch…

Harvard said on Thursday that my lungs on the x-ray looked better than me… again WITH THE SH### BEDSIDE MANNER…. And we love him, like the way I love my Godfather Sandy, who sadly passed away when Ian was a baby, and even worse never met Norah.  The way he said my name, it made me smile, he would look at me and say KT in the sweetest most loving way, another amazing man who taught me with the smallest acts of kindness, how I deserved to be loved…

All you Dad’s out there, you are on notice, this is your job, to teach girls how to be loved.  By the example of how you love your wife, how you treat your Mom, how you treat your little girls…

Sorry for the side-bar, needed to get that out, back to recovery… So Harvard, is still working on fixing the lungs, it’s a drag because the best way to slow the pain and the f-ing cough, is with this high powered cough syrup, (and associated other drugs) that by late in the day is knocking me out...

So today, I’m listening to Paul McCartney singing chestnuts roasting on an open fire (the Christmas song) it is really very sweet, McCartney singing xmas classics…and its crazy foggy outside and I’m on the couch as my peeps get ready for Mass. I haven’t really talked about Mass and my faith life…it hurts my heart that I can’t attend Mass on a more regular basis.  I can't due to several factors, temperature, my cough, the way my body is behaving, how much Mass can tax me for the whole day… it’s a litany of issues.

I love being a Catholic, being Catholic is like being in a dysfunctional family. That’s exactly why I love it…. You have your crazy relatives who say totally inappropriate stuff at the wrong time, you have relatives that behave badly, really badly, and you have no words to express your disgust or outrage, but every week you head off for family dinner and get the reassurance that you are family. That the good outweighs the bad. You share an amazing meal with your family of origin, all dysfunctional and messy but steeped in what you hold dear in your core. The meal that is familiar and frankly the one you need in your soul, the meal that is only fulfilled with Christ. That’s why I’m a Catholic. I do messy, I do uncomfortable, I do soul nourishing, I do my faith…..

One way I take the edge off not attending Mass is by having some of the girls I love most bring me communion. The other way is I read a ton! You know my girls are Eucharistic ministers, an approved job for women in the church… but I will stay silent on the role of women religious and other wise because, we are just girls after all….. Any who, sorry for that one too.  I read a slew of blogs, email subscriptions and various web sites.  My favorite is my daily email from the Henri Nouwen society…. If you don’t get this daily email, you should… three minutes of love for your soul. Feeding your soul with grace, it’s the best thing…

I've found that feeding my faith is a big piece of why I’m still here….my work is not done. I have a husband, children, and a whole lot of doctors to still impart with my own brand of foolishness…so if you don’t get it… get it. Henri is the best of the best…. a Priest who remained celibate as he struggled with his sexuality, a man who yearned for love, a humanitarian, an amazing writer, and yep a Catholic. He so would have been at my family dinners… Read him. Seriously!

O.K. back to the daily stuff. So my Clive Owen look alike, Jeffrey has had a hideous several days since Thanksgiving. Two days in class at AU, a marathon trip to Seattle, home for 10 hours most of them sleeping, heads to Antietam to walk the battle field for a leadership class all day Saturday, in the F-ING bone chilling cold, to talk LEADERSHIP at Antietam the most f-ed up, bloodiest day in our history. Then my sweet husband rolled back home to spend a miserable dinner with (us) his loving family, where we all complained, bickered, whined and glared…. Through the first lighting of our advent wreath that was so missing the love of Christ.  Christ didn't join us at the table that night….then miraculously we all kissed, hugged and went to bed to make Sunday oh so much better….

Which gets me to Obi-Wan. So after I sent myself to bed for displaying fantastic table manners, winning personality and frankly just being steeped in love... I watched two hours of a terrorist series on Cinemax and realized that I was just cold and tired…

And in blows Ian… “Mom, got a second for a quick snuggle?” YES I’m MOTHER OF THE F-ING YEAR…. “Of course lovie, come on in...What’s up?” ”well mom, sorry about dinner, I went through all my Lego stickers and made you this card of Obi-Wan, you know he is your favorite Jedi Knight,” “ Gulp, thank you sweetie,”….” and look Mom he is strong, powerful and always does the right thing…”

Now my sweet Ian is so right. First off Obi-Wan, take your pick Sir Alex Guinness or Ewan McGregor, hello nice eye candy. Lucas made the best character of all time, honest, trust worthy, the best friend, fearless… and of course trying to save the galaxy…. I looked at the card with tears in my eyes, and all arms and legs Ian tried to curl up on me while I coughed and just smelled his clean soapy little man smell and just remembered…. We are fine, just all a little tired, all just ready for daddy to be home… just ready to hunker down and have our family schedule back. We do have Christ here, we are all good…

So, Jeff and I are up early Sunday trying to pull life together as he leaves again for a few hours for Norfolk till Wednesday… I’m forbidden from church since I sound like something between a barking seal and a dying  fish, who’s mouth just keeps moving! Any who at one point I say to Norah, "hey sweetie quick question", she is sitting at the island on the computer, “Mom, listen can I get back to you, I’m a little busy", and you know what she is doing?  "I’m saving the galaxy Mom!"  Well you go girl! You can never have too many Jedi!

May you find Christ in the small and large this first Sunday of Advent.

My prayers are for more Jedi, more patience, more peace... And a whole lot of family dinners, however you can…

Namaste, my brother and sisters…Namaste

Thankfulness and My Miracle...

Thankfulness and My Miracle….

It is black Friday, while everyone is out shopping the Ferg’s do what we do best. Chillax… Jeff went off to work, his favorite day of the work year… no one to bother him, he drinks coffee, files, organizes emails… it must be spring cleaning in a way for him…

While the rest of his peeps eat left over pie for breakfast, and eat some more for lunch, still in our pjs, we just relax. Jeff is always home by 3 on black Friday and we are still getting our bearings even though we all have been up since before 7. We had a very late Wednesday and Thursday, prepping, cooking, and cleaning for Thanksgiving. So on Friday, I am exhausted.  No reason to get out of pjs.

Thanksgiving has capped off for me a very busy month… I put myself out of my comfort zone and did a Christmas bazaar of my work.  I created Christmas wreathes, signs scrabble phrases, ornaments, flower arrangements…  I got a huge positive response. That confidence launched me into starting an online business on Etsy.  My dear friend Jess always says that she tries to force herself out of her comfort zone.

That really speaks to me. Since I have been battling this disease, I have lost my confidence… I’m not sure how long it has been, it just has taken a beating for what seems like forever. I worry more, trust my gut less, it is like the disease has robbed me of my fearlessness….

Once I realized that, I was all over it, knowing it had to be shut down.  I have spent so much time waiting and praying for a miracle, looking for the answers, questioning why I wasn't well…

I forgot that I am the miracle…

I am still standing, still breathing, and raising these beauties, still loving my man…. I am my own miracle… Just say it out loud.  (And say it loud)  It is the most powerful thing you can say…

And once you own it, I mean REALLY own it, you are unstoppable.

Everything seems possible. I am no longer crippled by the “what if”, and the “do they like me” or the desire to please everyone.

I just take the day as it is.

And if it’s a great day, I burn the candle to the quick, if it’s a horrible day, I just enjoy HBO.  It seems that this realization has made me tireless in a different way… I am no longer reaching out for security….. I am able to offer it for a change. I am grateful for November. It has moved me in a new path, a bazaar, an Etsy store… and a new level of compassion.

What astounds me is that I never thought I could be fulfilled staying at home, working from home.  I thought, I would need to be fed by people… When you are an extravert’s, extravert; people are like sunlight and air. You have to have it to survive.

And I thought this disease had robbed me of that piece of my soul. But, what I have learned is that I can fill this part of my spirit through making little tableaus, little gifts for people’s homes… My trinkets are part of my healing… My work is my soul that I am sharing… My spirit is in the work and that work is the miracle.

The smile on someone’s face as they place my craft on their dresser, or door… They are carrying my wellness, my fearlessness, my lemonade in the life that happened while I was planning a different one….

But this life is far richer than I ever dreamed… My eyes are so clear to life, to the present, to the gifts of this family…to the children.

It is all a miracle… I am a miracle.

Thank you for bearing witness to my miracle.

Namaste

The Name We Don't Speak Of...

The name we don’t speak of…

You know how in the awesome Harry Potter books they talk about Voldemort as the name we don’t speak of… well when you have big health issues, like a stupid autoimmune disease, you don’t talk about remission… It is a dirty little word because it puts every one of your life dreams into that one word… Now listen, I’m  not saying I’m poor little old me in a corner crying about what my life could of, shoulda, would have been… I’m never going to run the Marine Corps Marathon, I’m not going to sail around the world…

But, I am the best wife and mom I can be… and that is good enough.

Life isn't perfect and life isn't easy, and frankly for too many of us, we have held onto the notion that everyone gets a trophy… everyone should be on the A team in soccer… Well news flash, not so much.

Maybe the best we can hope for is to learn to appreciate the exquisite moments of everyday activities… to love them, believe in them, revel in them and pull them up when you are in the darkest of the darkest moments…

For me my exquisite moments are very simple… a morning spent in meditation guided by the voice of a friend and sister that I would follow anywhere, a keg party for my girl Beth on her 40th birthday, the best party I have ever thrown, doing errands and getting slurpees with mini A and talking about where babies come from, first born sleeping on my chest for hours in the warm afternoon sun… You never get those moments back…and lunch with Clive anywhere…we have never had a bad lunch together… tea with Maureen, chats with Jess about the weather… I can talk to Jess for days and never get tired…  Mass when I feel great, don’t cough and the homily speaks to my soul… and Thanksgiving when we all sit down, the broken parts of my family quiets for a meal…These are my exquisite moments…

I can pull the memories out often to warm my soul, and there are many others, I can’t talk about, too close to share today….but this is what I do to get through… I don’t know how to run anymore…

Today when my Harvard said the words I have been dreading… ”we have run out of new treatments”, words I already knew, have been keeping me up for days, but didn't dare say out loud.  I’m left with the truth of the word we dare not speak...

There will be no remission for me today… or this month… or probably this year…

What amazes me is that I’m not sad, hurt or angry… I’m just diving into my box of exquisite moments… eating candy with my kids and laughing, being grateful that I’m not a new Saint this year (it is all Saints day after all), reveling in my kids joy in a holy day that we stayed in our jammies... That I won’t feel guilty for missing Mass… that I live in the Mass of Christ’s light... in the belief that this is not the world we are striving to succeed in, that these bodies are just a stepping stone to HIS plan… that I’m just working for the next life that will be free of the brokenness of this body… That we are the people of the resurrection…

So no, I’m not sad, or disappointed by this news… it is just an annoying little sometimes very big part of my life… We move on, we stay focused on the light that matters… Our exquisite moments and our faith...

Namaste my friends… the divine in me, bows to the divine in you…

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….

My Medical Conference Speech...

My talk for medical conferences:

So, I’m serious when I say I want to educate our beautifully educated doctors… Listen I love my doctors… I’m a hugger!  Every time I get a shot, my gorgeous female allergist and I hug it out…Harvard hugs me, it is usually when he is crazy worried and he puts me on prednisone AGAIN, and I remind him that I don’t love him right now….

But I will hug anyone. I’m a super hugger, I’m a lover and I feel fairly Irish, listen I love to laugh, love a good story, and love, love, love people. I’m an extra, extrovert. If you want to learn someone’s life story, call me!  People love to tell me their tales. Everyone has a story, and often your assumptions are wrong. Some people who don’t know my case think I’m dramatic because I have this beautiful coping mechanism, I shut down with a smile on my face and a facade and play it off… Harvard has had many a call from doctors who think I was faking, because as soon as I smell you don’t get it I’m done. ALL DONE.  I put on a smile and cover up my wounds and roll out on you. So from your perspective it looks like I’m dramatic, or faking… but screw- you… I’m not going to bear my soul to you if you don’t want to care. I think when you have been in the trenches for a while, patterns emerge, and patients sometimes seem familiar. But I beg you to be on the lookout for the zebra in your mist… You are missing us.

I also realize that I am unique, I can be scrappy, I’m tireless when I get a bone, and I have assembled a team, I mean a TEAM,  I have worked hard to make sure that I’m surrounded by folks who get it… Having a chronic disease is very difficult, it is very hard to explain, and people don’t get it, sometimes folks look so healthy and on the inside they are a disaster…I’m in charge, and when I can’t, Jeff and Harvard call the shots…. Harvard for the longest time only called me Mrs. Ferguson, and one day I was resisting his request to go to the hospital…and he looked at me and said,” Kathryn, this is not a request”… So I went, I do listen… despite what Harvard and Clive Owen (aka Jeffrey think… )

So back to my talk to the Doctors who may not get it:
1. It takes courage to go to the doctors. No matter who you are; or what station you are in , it takes courage to walk into a medical office. No one goes just because they don’t feel good.

2. Also, while depression and anxiety go hand in hand… some folks are sick and tired of being sick and tired….so just keep that in mind…

3. When you have a chronic disease you find tricks, or work a rounds, that information can be critical in deciphering our case.

4. It is unbelievably painful to give your medical history or you story over and over to folks, it is telling your worst story /tragedy over and over again, and  then waiting to see if  your doctor’s light go off that they get it…That is stupid painful….  from Hopkins, to NIH,  to where ever is next… The paramedic who finds you on the floor….

5. Going to the ER…. ALWAYS sucks… it never gets better, it’s always noisy, cold and scary…

6. Try to respect me, I’m the expert on my body, and when you are a zebra, you know more about your conditions than most doctors.

7. Just because I’m polite, charming, and funny doesn't mean, I’m faking it.  It just means that the Sisters of Mercy beat respecting authority into me!

8. I know you are already have patience, but try to just love your patients, imagine GOD forbid we are your girlfriend, Mom, wife, little sister… because we are someone’s, very precious someone, and if you damage us, one of you colleagues has to put us back together…

9. Please be kind to the nurse, orderlies, and techs who care for us, they are most often the best of the best and you miss them every day…

10. AND Just cause you are often the smartest person in the room doesn't mean you need to act like one!!!! Hello everyone thinks you’re an asshole when you do!

11. And when you show us some kindness, comfort, compassion… it doesn't mean your weak it means you are human just like us…

A little bed side manner, goes a LOOOOONG way.  Work on it Docs!

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

Inner Circles...

I say I love you a lot…..

One of the nice things about this little writing thing I do, is I get to break all of the rules Sister Teresa taught me… she was a wise woman who had seen it all and taught that way… No boy was too unruly, no girl too clever. I would have loved to have lived in the convent to learn life’s truths from my Sisters of Mercy.

But as always I digress… the summer is OVER, the neighborhood kids are leaving for college and adventures, my beauties start school on Monday… and my security blanket Dr. Harvard and his lovely bride are headed to Spain for a much needed rest (They are two dedicated and successful doctors, parents of a doctor and another recent graduate.)

So I’m a little numb. I hate this feeling of goodbye. I know all of these people in my inner circle will return with stories and great moments, but I’m nervous. Nervous and reminded that the only constant in life is change, we can’t hold it back, it continues with or without us…

I lost my step-father very suddenly on a normal day in October. My freshman year in high school was underway, I was adjusting, but on that day my world stopped and I felt the whole planet stop spinning. My step-dad was amazing, John I called him, I would have called him Dad; but my own Father was alive and God-bless him he was a hot mess. My parents did not afford me the most “normal” of childhoods…they divorced when I was 4 and mom remarried when I was 6. Her second; and by the time I was 8, dad was on his third marriage, my Mother was his 2nd bride. My parents frankly both stunk at marriage, both horrible communicators, I say this with love, although I know it looks like a criticism, it’s not meant to be. No one enters this world or leaves it unscathed, neither of them had the best childhoods and considering where they started, they did remarkably well.

My father, died in December of 1985, six weeks after my step-dad. Coupled with my brother’s near fatal car accident in the summer of ’85 and my mom’s serious hospitalization from pneumonia days after my Dad’s death in December, you can see why I really do get nervous….EVERYONE in my nuclear family had a serious medical issue that year…. It was awful, it was scary and it also has given me my greatest strength, my ability to love…..

I always say I love you on the phone to my girlfriends, my family and my close friends. I never let it go un-said.  It is probably why when I’m hurt by someone I consider in my inner circle, I lash out like a child, “I have let “YOU” in and you have disappointed me!”.

It is also the way people get close to me. When you deliver, when you face the lions with me, you are in FOREVER!

I don’t cut many loose, I’m horrible at keeping up, forget everyone’s birthday but my own, and I’m incredibly selfish. But I like to think that I’m that person you call after 20 years and you say you need help, and then I’m all in, like no time has passed….

Certainly things change…, my health and having two small kids have dramatically changed how I can help.  But I’m a lover, I want in, I can take the messy, the ugly, the awkward…  I don’t like to be on the outside when the people I love need me or I need them.

That’s why I’m unsettled. My dearest family member is going through it right now and she won’t talk to me. It’s not about me, there are lives far more critical that matter, and I get it! She is in Mama Bear mode and I have tried to respect her privacy. I know exactly why, she is who she is, and I love her for it.

We are exactly the same two girls we have been since I can remember. I’m technically 2yrs older, but that’s a lie. She was a grade behind me, but always smarter, sassier, better with the guys, better in school, a much better drinker and she is by far one of the funniest people I know. She is my sister, even though we both have our own. We know the family history, we know all the backstories, and we know all the dirt. But when she works her stuff out, it is always alone, and when I have stuff, she is always in it. She will talk to me when the storm clears which is her right, but I’m selfish, I worry, I need to know she is fine. I’m on the outside, and I miss her. Her laugh, her humor, her anger… but I realize that in the moment of her deepest suffering, she has turned to others.

And I mourn for her, her life, her family, her pain, all of it... I mourn my girl. The ponytails and the first days of school, almost all my memories are with her. And as we begin a new school year, I miss my dearest, I miss my family, the girl who always steadied my ships, she has been there for all my big moments. But I realize I have not been in her most sacred moments. I’m not in her inner circle any longer.

And I’m sad for me, for us, for life moving on.

And that is why I’m sad today. Life is spinning and I can’t slow it down. I’m afraid today, for those I love the most that I can’t protect. I want them safe, happy and healthy, but I can’t control that…, only our faith can.

The Faith that can move mountains, I know this and trust. But that doesn’t mean I’m not unsettled by it, or have to like it…

Batteries...

Batteries…

So as the worst mother, in all of human time (I thought I should get the self-loathing over right from the start)… My children are experts on the Wii, that lovely device that keeps them zoned into another world when I am on the couch, vomiting and coughing.

The Type A part of me is once again arguing with my immune system. Therefore the Cyclosporine A, which is designed to quiet my body down is now causing more issues than assistance.  So the bottom line is, I’m vomiting and suffering… and let’s be clear, vomiting for any reason other than college foolishness is no good.

I hold a doctorate in vomiting, can do it anywhere and at any time. I have done it in my kid’s school bathrooms, in the parking lot at pick-up, my kids hear my vomit cough and they come and go running. First Born (FB), is a dear, he runs to find me a trash can, bowl, vase, anything… he is so sweet; I know I have run him over more than once on the way to a sink or toilet… Mini A, well she just bolts and covers her ears like a dog during a thunderstorm…. I find her in hiding, after I manage to wash my face. The good news is she is going to respond well to the binge drinking talk…

But I digress, so Cyclosporine A or as I call it Psycho A, is designed to suppress your immune system and I have misbehaving Mast Cells which Psycho is supposed to calm down… the bad news for me is that these delinquent Mast Cells, not surprisingly hang out and belly up to the bar in my weakest places…. “Alex, I’ll take lungs and digestive tract issues for $1,000.“  Now here is the thing, it would be tolerable if all this vomiting biz was for a greater good… like Emily Blunt in the Devil Wears Prada, “ I’m one good stomach flu away from my goal weight”, but that is not what happens for me, I just get weak and my electrolytes get all fucked up and I feel miserable.

So back to the Wii, Mini A came up to me last week and asked how I was feeling. She was nipping around the edges because she didn’t like the way I looked. So I explained to her that I’m like the rechargeable batteries for the Wii remotes. When your remote batteries are dead, we take them out and put them in a charger. Some days it takes all day to charge them to green, some mornings we wake up to them being green because they charged while we slept, other mornings we wake up and they are still red.  It is always a mystery. She loved it, so now when we wake up, she looks at me and says, “Mom what color are you?” And she understands that if I wake up red, it’s a day that is never gonna be green. Some days I wake up yellow, or a ½ tank and some days; I’ll be green all day. It was a great moment, a concept that she could understand, Mom as a battery.

If you scour the intranets (my mom called it that once and we use it behind her back). You can find some other examples to explain the depth of fatigue, beautiful ones like the spoon theory, but for my kids living with electronics, this explanation was perfect.

I love this for all my beautiful Moms. We all give everything we have, use this with your kids, they shouldn’t grow up thinking that you are super woman. You are human, a mere mortal… keep that in mind. God did make the 7th day for rest for a reason.  Quite often we need that day to recharge, to get from red to green.

As for me, I’m delighted to have a moment that she will carry forever, how coo coo Mrs. Mommy (as she has taken to call me this week) works.

As for the vomiting, Harvard will be on deck in the morning to fix that problem, for now I’m just chillaxing, sipping some warm tea.

Namaste (the divine in me, bows to the divine in you) my friends….

Walking Through Life's Doors...

Walking through life’s doors….

Do you ever dream of meeting yourself, at moments in your life, when you would get to be a Mom, sister or friend to yourself?  Given the chance, I would put my arm around me and say… “Lovie, you can handle this, you are fine, be fearless, love your husband with reckless abandon, your kids are perfect, you are too… You are amazing…. You are a great person and friend… I love you! Love your body, its perfect for you, it serves you well, drink more, you deserve it! Dance on a couple of tables (safely of course). “

As a religious and spiritual girl, I do see things more easily now…  Listen, I’m not perfect.  My favorite “secret word” is never mind,  my Mother hates it; that’s why I love it…. Aren’t we all 13 at heart?

 My priorities are simple; Clive and the peeps, everything else is gravy….

I kissed my Clive, for the very first time on my 21st Birthday and by my 22nd; I was a mere six weeks from marrying him. Looking back, I marvel at my 21 year old confidence, the core of my spirit that has always carried me… I think about her often.  It always comes in the spring as I watch a new group of kids graduate, my little diva graduating from kindergarten, or my dear one across the street headed to a fantastic college in August.  It’s the joy; as they step through another door…  I wish I could just tell them, “don’t worry, it really does all work out.  And whatever is on your worry list; it won’t be the thing that derails you to your core.”

It instead, will be something you never could have planned or seen coming… I wish life was more like tv, I live for previews and coming attractions… but if I really knew, what would I change? Would I drink more? Abuse this broken body more or would I have treasured it? We will never really get that answer, but maybe we would slow down and love more moments…

Why as women do we make it so hard; tear ourselves down over our imperfections? Aren’t they what make us special? Our crooked teeth, our funny toes, our breasts, our wrinkles? I could go on about the breasts, my little 36 AA’s (but not now).

I get so mad at women who freak out about having stretch marks… Listen bitches, I worked damn hard to bring these bebes into the world; you girlies with your perfect bodies need to bow down and realize I’m the golden ticket. I have the hubbie, who also doubled as my baby daddy, and yep we were married for 10 years first. I know, so countercultural, and these lines on my hips are from the weeks I laid in hospitals and on bed rest to keep them safe in my easy bake oven, so worship this! I’m so proud of them; I put lotion on them,  and say don’t lighten, stay bright and beautiful, I earned them  and I love’em.

My broken body is perfection, it is mine and I try every day to give thanks for my flaws, they are real, and present  reminders that I’m still here fighting for this life, fighting to be well, undaunted by the foolishness …

 So tonight, sit back, have a glass of wine, make a great dinner, enjoy a walk and enjoy the journey….

And you better make love with the lights on… you own it!

Your 2 AM list...

Your 2 am list:

I often wonder what other Gals worry about at 2am… When you run the life lists, how long and scary do they get? Some of my nearest and dearest lists are very scary indeed.

My childhood BFF was my sister in law, she was married to my older brother and he is a class A jerk, her list is looooong.  And really well deserved. But, I love my brother, I mean I love him, it sucks to have a BFF who is wronged by a total A-hole and oh by the way that total A-hole is your bro. Nice!, thanks again for that bro. I would like to take a baseball bat to his car, but it would make me more tired, and I would have to explain to all the children why Auntie K/Mom is sooo much crazier than they ever thought….that would take too much time…. And the work to find a cute lawyer, and coming up with his code name (insert famous movie lawyers here)….and my 2am list is long enough, I don’t really have the time or energy to conduct felonies…

Usually my list is very simple…, I worry that I will die.

I’ve got a couple other things, the mental and physical health of the beauties, and Clive being sick/dying, and of course money, but the big one is me, that’s it. I won’t be here to teach the kids the life lessons they will need, that I won’t be here with Clive to grow old and watch the beauties fly from the nest…

That phrase, “life happens while you are busy making other plans” what an honest line… could anything be more true?  I waited 10 years to get my shit together, before having kids only to find out I had turned on the magic switch to my body’s crazy. Should I have had them at 22?, would that have been smarter?, would I have been a better Mom? (or at least have more energy and have a body that wasn’t breaking down?).

I think not. I am a better woman at 41 than 22. Better wife and mother. I’m a great friend, I have learned to pass on many things; focus on the simple, time is really short, don’t sweat the small stuff.  But, I still worry about what am I teaching them, what part of me will they carry into their future?...

I have a great friend who says her number one job is to simply, “Get her kids to heaven”. It is brilliant.  Whatever you call your faith, it is true, you want your children to live with happiness, integrity, and truth. You want them to be good people.

Isn’t that the only thing we should really worry about at 2am?

Isn’t that more than enough?

Sleep well…

Gram's Gift...,

Grandma Ellen’s gift:

My maternal grandmother’s given name was Blanche Ellen Taylor. On her 18th birthday she marched into the DC court, and had her name legally changed to Ellen Taylor, a brilliant move on her part... Her parents had great names; dad was Aubrey and mom was Carolyn.  What the hell were they thinking in 1923, naming their poor kid Blanche!?

I had an awesome relationship with her, she loved museums, history, shopping, Dallas, Dynasty, Falcon Crest, and harlequin romances… She was a very important teacher of life!

I would spend the night at her place, and we would put on PJ’s, have ice cream and watch TV. She would always fall asleep before the show would end. I learned a lot from broadcast TV, at a very early age! But, I delighted in her company, she would let me drink coffee out of these awesome 1970’s tulip pottery coffee cups, and eat cottage cheese and pineapple.

Her parents divorced when she was really young and her dad retained custody, unheard of in the 20s. Her dad was an editor for the Washington Post and she was his little princess. She knew several presidents, had been to the white house often and told amazing stories. She adored her father, her mother she didn’t really know, but was said to have an itsy bitsy issue with adult bevies. They don’t call it the roaring 20’s for nothing. Kind of ironically, I look remarkably like Carolyn, my great grandmother…. Maybe that’s why I was the pet. I filled a space in time and with love that helped fix her broken place… I was what she had missed, grandchildren are so great, it’s all the fun with almost none of the heavy lifting… You are the precious one...

So that said, when she developed breast cancer when I was in my early 20s, I was devastated… I had already lost so many; all my other grandparents, uncles, my father, step-father, it was a devastating blow… She was as always a trooper, never complained, and we had this awesome relationship.  We talked all the time, Saturday mornings we would have coffee early where ever in the world I was. She looooooved  Clive, thought he was adorable, and a catch! At one point Clive and I were living in Seattle and she in Myrtle Beach and I would take the red eye to DC have a cup of coffee with my mom, and fly to SC for the weekend, then back to Seattle. I was so young and had so much energy back then, before my body started to fail me.

So Gram had this sweet necklace that she always wore for the last 10+ years of her life. It was a necklace with gold add-a-beads, a St. Christopher, a cross and a Miraculous Medal. She never took it off. She was wearing it when she died. When I flew home to speak at her funeral, Mom gave me the necklace, and I have worn it almost every day since.  The beads are gone, the medals look worn, my littlest one, loves the necklace, and since she was a baby;  has held it and tugged and asked me what the medals mean, what Gram was like, seen her photos…

So the night before my first born (FB) received his second sacrament of initiation (first Communion for you non-Catholic trivia experts) I was rummaging through my jems and jewels box looking for something and came across three of the same medals; a tiny cross, a miraculous medal Clive gave me, and a small St Christopher I gave Clive… Gram was working her magic, girlfriend needed some love, she was not the center of the whole world for a moment, so I made her a little something… I strung them on an old gold chain and my girl now has her own matching necklace.  Just like mine, just like Gram…

We share Gram’s gift. She carries a piece of me, and the gift of Gram all at the same time…. These little pieces, little treasures…. They symbolize our faith and our family.

Gram’s gift.

Love you Gram.

Rainy Days...

When rain is just rain…

It’s a beautiful day, my favorite day as a Mom, today is filled with rain… The beauties are next door for a while, they will come home in a few minutes.

Rain, it is my friend. It keeps people inside and close.  Because it really is just a great day to slow down, I love rain days because my beauties ask little of me…and I get to say yes to everything. I’m not the president of the NO society. NO we are not going to the pool, NO we can’t go to the park 15 minutes away, NO you are not going to bike ride without me into traffic, NO, NO, NO….

Since playing outside is out, they are more loving in a way they don’t realize. We are stuck inside together, we play cards, snuggle on the couch, read, laugh and I get to delight in them without the guilt…. The messages slowdown in my brain…. I can just be their mom, without the running, jumping, biking, swimming, table dancing (ok that’s for Clive).  I don’t feel guilty because of the things my body won’t let me do.  I get to be normal, chillax (chill and relax as we call it here)…

I don’t beat myself up with the messages of what I lack, I’m level and “normal” for one spectacular day with the other super moms of the world…

The messages in my brain change to what I CAN do… Cupcakes, check, read, absolutely, paint, move over Monet, watch a movie and doze…perfect… I get to be me in the most beautiful way… Rainy days are my tender teaching moments, when I get to love at my most, when I can breathe and be…. I love the rain.

My kids are so dear they have through no choice of their own “taken the road less traveled”. And I holding their hands lead in my own way, the me I love, the best of me… I breathe…. Take a moment to let the body rest and breathe, nothing to do, nothing to accomplish, just be me, listen to the rain and laugh…

I love the rain…. Time for some jasmine tea and my beauties…

Cold Urticaria...

So, this is my first blog post ever, here is what I can promise you… my rules:

1. Bad language, this will not be a blog that some of my favorite minors can read, we will give a self-imposed R-rating for language, sexuality and stupid situational violence (like when the window fell on my head on New Year’s Eve,  Eve. There was a lot of blood and broken glass, no bad language till after the concussion, my son who was 7 at the time was with me… But the re-tell is soo good but R-rated)

2. Missssspellings, I stink at spelling (the nuns never were able to fix that flaw) and more or less grammar too (I do feel bad for Sr. Teresa, she tried her best)

3. The honest soul barring truth of living with a chronic disease, raising two young beautiful kids, a crazy hot Clive Owen of a husband, who also answers to the name Jeffrey, Jeff, Dadddddie and promised to love me in sickness, health and foolishness, 20 yrs. ago.  

4. And the crazy truth of the network of Doctors, friends and family who duct tape me together every day…

5. And that all of my entries are as true as I can recall them, on the meds that my medical team deems useful for the quality of my life… 

6. And oh yep, the names of many will be changed to protect the guilty.

7. And lots of ellipses, digressions, round about tangents that may have a point (and many times may not (and many parenthetical asides))

Well alrighty then let’s get to the getting. I have told this story so many times it’s sometimes hard to get started. How do you start a story mid-story… Well you just dive in:

I have series of medical issues, that I will divulge piece by piece, no point in freakin you out all at once… (Bells Palsey, Pulmonary Embolism, Chronic Bronchitis, “Lupus” like symptoms which is the biggest bullshit diagnoses ever (but I’m getting ahead of myself)).  The biggest issue lately is Cold Urticaria.  

Exactly.  Cold flipping,  Urticaria is when someone is literally allergic to the cold.

I first noticed it way back in 2006, but it has gotten so bad that I’m under the care of NIH in Bethesda,MD. For you non-beltway folks, NIH is the Feds research hospital, so a big thanks for paying your taxes.  Some great research is done there on unusual diseases and I’m that girl. I get the GOLD STAR, I’m the worst case they have ever seen. My body does two stupid things… I have the shortest exposure time to cold, and I have a really bad reaction… which means I have anaphylaxis to the cold and I wear a cute med-alert bracelet and carry an epi-pen. I’m a carnival show, medical people love me cause I’m the best side show going. I always have a room full of new friends who want to see me and understand what happens… I know more about my disease and how it works than most ER staff, which is tricky cause if you are swing into the ER Cafe,  you are not at your best… and I’m never offered a latte or a snack, it’s always the same IV fluids that if not warmed will kill me… So they bring out the hypothermia gear and start a line… its goofy…scary and I need to have my A team with me always or I’m screwed…. All fluids infused with an IV have to be warmer than my core temp or it’s dicey,

So, Urticaria is from the greek for hive and that’s what I do. If the wind blows, and you get that chill, I get hives, like a horrible bee sting, and its anywhere my body is exposed, so my face, ears, hand, legs are all big issues. I can get hives from ice in the freezer, cold tap water, granite counter tops… I always have a sweater on when working in the kitchen. Walking across the bathroom floor barefooted is a big, no. Forget the store, Target is on my list since they put in grocery’s with big freezer/refrigerator sections in my store… that sucks! Church is tricky because of air-conditioning in the summer and it’s so big it’s really cold in the winter. Leather couches are a problem, cold cotton sheets too! If your hand is colder than mine that sets off a reaction up my hand and arm….  I’m a freak show, wet grass, rain, pools NO, showers iffy…. The list is endless

So I get theses red welts where there is contact it takes minutes or hours to go away… but what the issue is it dumps histamine into my body, it’s a flood, sometimes based on the severity of the reaction I feel it… it’s a woosy, nauseating feeling…can knock me on my ass for days... and then there is the cough… now I have the worst cough ever… people move away from me in the drs office, at church, anywhere… it’s scary, my kids hate it… its looooud and as a whooping sound that goes with it… and it’s hard to manage. Harvard (that’s my pulmonologist), he hates my cough, he always is worried I’m gonna crack some ribs… I bruise them all the time… I play football with myself...

So, the good news, cause you gotta hear it… I have the best support system ever, for someone who is a crazy bitch, I have an amazing team.. I’m loved, protected and supported… But I will share all my foolishness, Clive thinks I need a place to tell my story for myself and for others… So that’s why I’m here.

Of course the physical stuff is just half the journey.  The other half is my emotional self and faith.  Sometimes my faith is strong and I know I’ll get better, sometimes it falters and I’m not so sure.  But, that’s part of the story as well.

Well that’s enough for today.  I’ll introduce you to various members of my medical team (including NIH and others) as we travel together.

Let the pilgrimage of the green couch begin…