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…

About Me

The pilgrimage of the green couch: one gal's journey of faith, health and life, all from her very own sofa.  A journey through the trials and tribulations of fighting and dealing with a chronic disease.