Posts Tagged ‘Mom’

Let the Storm Rage On

Frozen-150x150My 2-year-old does not ask to listen to the Frozen soundtrack in the car; much to my delight, she asks to SING FROZEN! A former musical theater actor, I have a particular love for singing in the car. I first bonded with a most precious friend singing Cabbage Patch Kids songs in the car on the way home from college…yes, college.  It makes me incredibly happy singing along with my mini-Idina in the back seat. Like most of America, my daughter’s favorite song is Let It Go, which she sings with absolute abandon. To my surprise, this song continues make me cry every damn time we play it. Something about the idea of

I don’t care
What they’re going to say
Let the storm rage on,
The cold never bothered me anyway.

has me by the heart-strings. It speaks to my life with chronic pain in such a clear, defiant way. A sort of screw-you to the day-to-day struggle to remain normal, to ignore the rejection, to be tougher than this disease I do not control. I know I’m not the only one who has found myself in the lyrics of this anthem. Sometimes you just want to scream

And I’ll rise like the break of dawn
Let it go, let it go
That perfect girl is gone.

Ultimately it is the idea of being free that makes it all so right. I never, not for the briefest of moments, feel free of this pain. So if you see me and my kiddos in my car belting with everything we’ve got, please understand: I am standing on my ice castle, hair flying behind me, absolutely free. Can’t keep it in, heaven knows I’ve tried.

 

This I Believe

WebofLifeIn my religion, each member has a different belief system based on their experiences. Every year my Unitarian church asks 4 people to present their own sermon of sorts. We are given 15 minutes to share what we most believe at this time in our lives and how we got there. Often times it is an opportunity to share what is unique about your path. I was given the honor of sharing my This I Believe a couple of months ago and wanted to share it with you all as well:

I have written this presentation at least 5 times, each time it was completely different. It is amazing how many things you can really BELIEVE a matter of 6 weeks. If I had stuck with earlier drafts, you would have heard about my Catholic upbringing, or my passion for the arts and theater, or 10 minutes on how amazing my little girls are. Eventually I realized that I have had three events in my life that have shaped what I believe more than any others.

The first was my baptism, a sprinkling of water that tied me forever to my Catholic roots; to my grandmother who only voted democratic once — for JFK — because the trinity trumps politics; it ties me to the midwest and a family that goes back 6 generations in Iowa alone. This baptism would one day allowed me to be an “altar kid”, carrying a solid wood cross twice my size down the aisle, almost beheading the entire 3rd row before my dad caught the swaying cross-turned-weapon, saving the priest who was dodging just behind me.

The second event was actually two separate moments in time, those two moments when my entire world split open and sprung my most precious gifts, my girls, who shook my life back down to its roots with the purest love I have ever experienced.

The third event was less so an event, it was more like an unexpected redirection. Now that I think about it, it reminds me of the time I was learning to jump horses at camp. My horse decided she was done working, one jump before I was. We ran at the gate from across the ring, I leaned forward, ready to soar over the fence with power and grace, and the horse stopped dead in her tracks. Sending me flying over the gate without her, thrashing as I hit the dirt.

Eight years ago, 10 months after the birth of my first daughter and about 4 months after my husband Bryan and I signed the book here at WBUUC (after hearing about it at a Peter Mayer concert), a searing ribcage pain sent me into my GPs office begging for relief. It took over a year of undesirable tests and failed diagnosis to realize that this was not just an irritating bump in my path, I had again been thrown from the horse and I had no idea how to get back up.

I was born Catholic and I fell in love with a Jew. When Bryan and I came to the doors of WBUUC we were like many, first baby in our arms and looking for something my original faith had not offered. I wanted my child to know the same kind of community I had, but so much more. And, I wanted her to understand that there was something bigger than herself out there, whatever that would be. The idea of spending a moment of peace here each week, looking out that window, listening to this music and pondering what I believed seemed such an absolute indulgence to a crazed working mom still nursing her first-born. Before the pain I had the luxury of believing, or nor believing anything I chose. When the pain moved in, I needed my beliefs to stand the test of adversity.

When I first heard the term web of life it seemed a sweet, if a little hippie-dippy, concept reminding me to care for the world around me, to follow the golden rule. My experience of chronic pain has given me a deeper understanding of the life and death nature of this principle. In the movies, when someone becomes seriously ill they take to their beds, absorbing the care of family and friends until they come out triumphantly on the other side. In the world of a lower-middle-class mom, you have an invasive medical test and then hurry back to work before your lunch break is over. I dream of a day in bed.

I am diagnosed with a disease called Sphincter of Oddi, a rare and incurable disorder effecting the valves in my pancreas. It causes a variety of digestive fun along with 24-7 ribcage pain, it is similar to gall stone pain. To put that into perspective, every time I’ve stood up here to read, or in the Religious Education classroom to teach, or waited in line for morning coffee, I have been in pain. I am in pain right now. I control the intensity to a certain level with medications delivered through an implanted Medtronic pain pump.

The experience of chronic illness is not the stuff of movies. At its worst, chronic illness makes you feel as though you have been kicked off the web of life, rendering your own existence unrecognizable. The medical system is not the God-like place we hope it will be, when Doctors run out of solutions they tend to push you away, or worse, make you feel that your pain is only in your head somewhere. Employers, who once appreciated your investment, start to see your sick days as a hit to their bottom line. And after 8 years, even the most dedicated friends start to fatigue. It is hard to blame them, I went from a person who spent her time chatting about Gossip Girl to someone preoccupied with her fight for insurance coverage. I’ve also witnessed something I’d never imagined would happen, loved ones finding fault with my choice of treatment and using that as a justification to completely ignore my disease. Ultimately, I think it is just to hard for them to come to terms with the fact that I will have this pain for the rest of my life and they cannot do a thing about it. But, it is the most isolating kind of coping mechanism I’ve experienced. I have looped the steps of grief for each of these relationships many times, mourning a loss of faith and trust that I had in them.

At them same time I have become someone who absolutely needs people, something that feels very out of fashion in our up-by-the-boot-straps culture. I’ve had Doctors listen to me and treat me in a humane and loving way. My current employer trusted me when I said I could leap into a new career, chronic pain and all. I have friends and family who call every time I go through another test or procedure, sending cards with words of encouragement — even 8 years later. They have supported me in every way possible, including the roof over my head.

Many marriages falter under the weight of chronic illness, when the in sickness and in health part becomes very real. I married a man who meant what he said. Bryan has been my constant advocate and soft place to fall. And when my girls come flying into the bedroom in the morning, urging my grumpy butt up-and-at’em, I am grateful for their inspiration. These are the people who have grasped my wrist and held me on the web of life when it felt like no one wanted me. When if felt like life itself had betrayed me.

People are always trying to find a silver lining in all of my pain. I think they want to make something they cannot imagine into something they can feel OK about. I’ve lived with it long enough to be OK with that fact that it just plain sucks. The thing that makes it OK , even more than meditation or prayer, is the active love of family and friends. I believe more than ever that we all belong on this interdependent web of all existence: healthy or sick, rich or poor, working or jobless, thin or fat. I think we all like that idea, but only if the beings on the web meet our specifications, meet our criteria for deserving support and love. I hope that this experience has and will continue to teach me to love without conditions and to understand that we all have something important to share.

I can assure you, from the position of someone who knows: a day, hour or even minute spent stoking the star-dust in someone’s pained soul is the holiest of work.

 

Squeaky monkeys and Light

MonkeyMy husband and I rarely have enough cash to buy each other traditional Christmas gifts, if he’s lucky I manage to put a bottle of his favorite scotch in his stocking. However, we do make sure our girls are able to get some little things for each of us. This year we decided to keep it interesting by asking our 2 year-old what she wanted to get us, promising to buy exactly what she said. So I asked her what she wanted to get her daddy and she said, without hesitation, that she wanted to get her dad A TOY! And then she added, with absolute glee, “a squeaky toy!” If you’ve experienced my husband’s relationship with his girls you would know that this fits perfectly into their love of goofy, noisy, silly stuff. If it burps, farts or makes a face they absolutely lose their minds. He calls our youngest his Monkey Boo, so we found a squeaky monkey in the dog toy section at Target and wrapped it up. It was perfection.

On Christmas morning I unwrapped a beautiful candle set from my little one. My husband tells me that when he asked her what she wanted to give me she replied, again without hesitation, Light. My two-year-old gave me Light. If only she understood how profoundly she has brightened and lightened my life.

We celebrate solstice at my Universalist Unitarian church, which often includes a meditation on absorbing the peaceful dark, actively waiting for the light. For me, it beautifully compliments the quiet manger scene many of us contemplate at Christmas. I feel like it mirrors my struggle with chronic pain just as perfectly. I am trying every day to make peace with the dark, while finding the light wherever I can.

So many of us create hope and light for our friends, family, community, and even ourselves, during this winter time. However, it is rarely met with choirs of angels singing praises. This year we should be that choir of angels for each other. Let’s be loud in our support, gratitude and love.

I’m going to regress a bit into my 2-year-old brain, the one that recognizes what is funny, what is beautiful and what is important, without hesitation. I hope you all got a bit of light for the new year, it is a gift to be treasured.

 

Good rain

Playing in the rain

I’ll take the blame for this absolutely ridiculous blizzard in April weather (sometimes a bit of crazy narcissism is just what the Doctor ordered). I have been waiting, hold-up in my little house, hoping for a seismic change. Old man winter seems to be sympathetic to my plight, dumping slushy misery in solidarity. However, I am forecasting a change in the weather this week. My pain pump implant surgery is Wednesday and it is about time for spring to sprung.

These last couple of weeks, as I’ve been wrapping my brain around this change, a Storyhill song has been rolling though my mind. It has been reminding me of that smell of rain on the hot pavement, when it starts to fall after a steamy summer day.

It was a good rain
The kind that you wait for
And it’s not like it’s been too hot
It’s just that we’ve been waiting
And everything is different
Now that it’s raining

Everything is about to be different. I will soon be taking my girls puddle jumping in the spring rain. I’m going to need all of the finger-crossing goodwill I can get, so please keep me in your thoughts and prayers. Much love and so much gratitude.

By the balls

ClinicI had a doctor friend tell me that when she was in medical school the loser students chose the field of pain. It was seen as a money-making arena, rarely successful for its patients. Ambitious doctors chose other fields, where they could actually be effective.

A friend was just dumped from her pain clinic for remaining steady on her treatment plan for many years. She has a neck injury, two children and runs her own fulltime practice. She found a med that works for her, and has been taking it at a low dose without incident. Dream patient, right? Evidently, no. She doesn’t need expensive, experimental procedures. She isn’t making her pain clinic any real money and they need to make space for patients who need their services (i.e. desperate and have some insurance cash to spend). She is now struggling to find a clinic that will take her care on, her life will be turned inside-out if she cannot get the medication she needs.

Pain clinics are failing our community. I’m sure you have heard at least one story about the pill mills, and they certainly exist. But the demonizing story you are likely to hear is too simple and has made things impossible for those of us trying to get real treatment.  Most general practitioners are no longer allowed to prescribe pain medications, their clinics don’t like the liability. So if you have a chronic  pain disease, you are sent into the pain clinic system.

Let’s use my experience as an example: I have a condition called Sphincter of Oddi (SOD3), one of my digestive valves is misfiring — closing when it shouldn’t and remaining so, causing my entire system to back up. It hurts like hell, all day, every day. I see the top GI specialist in the country and he does not have a cure for me right now. My pain, and its cause, is very different from that of Fibromyalgia, RA or a back injury — it is called binary pain.  It is rare, but not unheard of. I have been with my pain clinic for almost 2 years now and I still have to explain what SOD is at every appointment.

Without knowing anything about my disease, my pain clinic had a list of recommended treatments for me at my very first appointment: take gabapentin, do physical therapy twice a week in their PT clinic, and undergo steroid block injections. I have discovered that this is what they recommend to everyone who comes to them, no matter their diagnosis. I don’t pretend to know why, but I suspect those injections make them a pretty penny. I did each of these things, the injections three times. When the third round made my pain worse, the Doc commented that he hadn’t thought that treatment would work for me.

Along with the expensive treatments, I get a lecture each visit about the horrors of using opioid pain medications. They simply must get me off of the one medication that actually works. The one thing that has kept me out of my bed enjoying my girls for the last 7 years. I have told them again, and again, that unless they can find something that actually works, I will continue the medications. However, if the war on drugs is successful at limiting the use if these medications for patients in good standing, it won’t be an option for me much longer.

I rarely see my actual doctor (he is one of the top 25 pain docs in the country), the clinic uses nurse practitioners and assistants to run the day-to-day appointments. I have yet to have an appointment where the nurse has actually read my chart before meeting with me. Every time I have a procedure with my doctor I have to tell him who I am, and describe my condition & past treatments, while laying face down on the surgical table. They must see thousands of patients a year within their 8 clinic system.

It is a money-making mill, and it is my only hope. Most pain clinics are much like this. If you switch, or doctor shop, too often they decide you are a med seeker and you can no longer get in anywhere. They have us by the balls and they know it, no customer service required. This is all to say that something has got to change. Contrary to the guilty-until-proven-guilty way we are treated by our pain doctors, we did not choose to have chronic pain disease and we deserve the same kind, thoughtful treatment given to those with other conditions, like diabetes or heart disease. Every patient should get an individualized treatment plan based on their actual diagnosis. Doctors should spent time with their patients, actually getting to know them and their potential for drug abuse. The end game should be bringing comfort to people who desperately need it, not filling pockets with cash. It is time to submit editorials, write to our representatives and advocate for ourselves, or continue to accept things are they are, in quiet desperation.

You don’t look sick

pain-faces-web

Recently my pain clinic posted a video asking patients how they want their lives to be remembered, it seems we have choice between “she was such a kind person, but oh, how she suffered,” and  “she lived her life to the fullest!” I guess the answer is supposed to be #2, all made possible by the clinic’s amazing treatment plan. Don’t I wish the answer was that simple, what kind of idiot chooses answer #1?

It is hard for people to know how to approach me. One of the most common compliments I get is “you don’t look sick!” I suspect they are scrutinizing me; trying to connect the person I am here in my blog with the person they see everyday running around with my kids. I’m not sure what a person with chronic pain looks like, maybe those faces on the pain scale? You have to watch pretty carefully to catch my “tell.” My weekend looks just like anyone’s: my husband works on Saturday and I take the girls to swimming lessons, shopping, errand running; Sunday is church and some weekend fun at the zoo or park. We love our family movie nights at home, or a dinner splurge out on the town. There isn’t time for illness, so I do subtle things to make life possible: like taking meds though out the day to keep the pain and nausea at a reasonable level (what a concept); I use a stroller for my little one and her daddy carries her more than I do; I sleep-in when I get the chance, leaning on my remarkable husband to wake with the girls; I am beyond exhausted at the end of the day, far more than I should be. But, most days, I’d rather end it in absolute collapse, than spend it on the couch waiting for my life to return.

It is easy to discount my pain by conceding that if you can’t see it, it doesn’t really exist. I further facilitate that notion by living, for the most part, as though it doesn’t exist — it is just easier on relationships.

I had an officemate who would notice a tell I wasn’t even aware of: I would hold my breath at my desk when my pain was ratcheting-up. She would notice that I wasn’t breathing and say something simple like, “it must be bad today.” I am glad, and proud in many ways, that I do not look sick, however, the unassuming way she acknowledged my illness was such an unusual kindness. It made it easier for me to keep on pushing, just because someone acknowledged what was really happening to me.

If I have learned anything throughout all of this, it is that we need to be better at acknowledging each other’s pain, without judgement or comparison. So, I guess my answer to the clinic’s question is: she lived life to the fullest, because she had love and support all around her.

Write it on your heart that every day is the best day of the year.

I have always unabashedly loved February. When I was a kid, hearts were my thing, had bunches of them hanging all heart-shaped-snowover my pink bedroom. Loving You Barbie was living in my plastic penthouse suite and every notebook I owned was covered in my original heart renderings. I’ve found myself lingering on memories of childhood happiness lately, because I see so much of it in my girls, and because sometimes I need a visit to that happy heart-filled place.

In year’s to come, this February might be the one I look back on for a moment of sweet contentment. I’ve had a breakthrough of sorts and I am tentatively hopeful. Last week I bit the bullet and did a trial for a pain pump, basically a pacemaker for chronic pain disease. My Doctor placed a catheter in my spine and then pumped pain medication directly into the spinal fluid. I spent the next two hours trying to piss-off my pain and, in the end, it only reached a level 2 of 10. Typically it would have been a 6.

Sitting in the recovery room felt like I was a attending a revival. The girl next to me kept saying “I can lift my arm! I haven’t done that in years!” It was truly amazing. The trial usually lasts for two days, but I got a spinal headache on my way out the first day, and my Doc had to pull the catheter. However, the first day was a success and we are going to move forward with the actual implant.

Wariness has never been my thing, I’m not good at it. So, while I wait for my insurance to move this process along, I am going to buy those heart push point pencils (remember those??) I’ve been eyeing at Target, I’m going to paint my toes pink and I’m going to eat too many gummy, sugar filled things. Hope you all treat your inner child to an unabashed Valentines day.

Write it on your heart that every day is the best day of the year. – Ralph Waldo Emerson

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