Mama Unicorn

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My youngest pixie, 5 years-old, is currently obsessed with the Disney Nature movie Bears. She runs around the house pretending to be a cub escaping danger and my job as the Mama Bear is to open the basement door when she roars– saving her from the wolf. Don’t I wish it was that easy to save my girls from harm, simply open doors and let them dash through.

My little cub is having heart surgery next week. We have been watching her murmur, Subaortic Stenosis, for most of her life and we suspected this day would come. Her heart has a small membrane in the lower left vertical that should not be there. As she grows, it is causing her valve to leak. Her surgeon will remove that tissue in a routine procedure. We love her Cardiologist and have absolute faith in our local Children’s Hospital. Simple, right? Yes, until I picture her little frame on that surgical table, which causes some sort of deep panic I’ve never encountered before. I will hold her bitty hand and tell her that it will be hard, but we can do this.

Adding to the fun, my oldest was diagnosed with Chronic Fatigue Syndrome this past year. Ultimately, we are okay. We will be okay. This is what our family does really well, what we’ve practiced at through years of medical adversity. The three of us girls have founded our own Unicorn Club, no one with “normal” health allowed! We do puzzles, obsess over crafts on Pinterest, watch Cake Wars and bake insane chocolate chip cookies. We mix the reality of pain and anxiety with hope and determination. We trust that their extraordinary dad will never join our club, remaining the anchor in our ever changing tide.

Along with watching Bears, we are listening to the movie theme song “Carry On” constantly in the car, like 5 year-old constantly. It is suitable theme song for the Freckle Girls:

There’s always gonna be some canyon in the way
There’s always gonna be a river I cannot cross
Somewhere along this path that’s chosen me
I know I’m gonna fall down, feel lost, feel weak
But wherever it leads

No one said this would ever be easy, my love
But I will be by your side when the impossible rises up
We will travel this life well worn
No matter the cost, no matter how long
We will leave our footprints behind
And carry on
Carry on…

Our boat is going to take on some water next week. We have our paddles ready. We will be okay.

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A Pump Size Rabbit Hole

rabbitholeI disappeared for a bit. Gone down a rabbit hole and I have much to report from the under side. Most of what I have to say isn’t a positive, but I’m going to say it because I hope it will fall onto the eyes of people who need to read it and maybe it will save them from the nightmare I am surviving.

I had a SynchroMed II Programmable Infusion Pump implanted in April of 2013, full of hope. I spent the next two years testing different types of medications and levels of med in the pump with my Medtronic nurse practitioners at my pain clinic. I was able to drop my oral medications, but never completely get rid of them, the pump just didn’t manage my pain well enough. And, although I was told that there would be little to no side-effects with the pump infused medications, I had a growing list of side-effects: significant drowsiness, swelling, weight gain (20lbs almost immediately), urinary retention, sleep apnea, sweating, numbness, hair loss and withdrawal symptoms when I skipped doses on my Personal Therapy Manager (PTM). These symptoms increased with increased dosage.

I hit a wall with the side-effects and my ability to work and parent last fall. I spent some time talking with a pain psychologist and decided that I needed to get off of this ride. We started lowering my pump very slowly to see how it would effect my pain. For two months we lowered it 10%, My energy went up and my pain stayed the same.

Then my pump broke. MidJanuary, 2016 I was hit with incredible withdrawal symptoms. It happened to hit the same week I switched my sleep aid from 1-12mg/night Benadryl to Melatonin, so at first I though it might be some sort of Benadryl withdrawal. However, it kept going for over a week and increased in intensity. I was not functioning at all for a number of days. And then, as quickly as it came, it left. I could literally feel my pump medications flowing back into my body and everything was back to normal. I immediately called my pain clinic and they responded that it would be impossible for my pump to be broken and it was likely my oral medications. They said this without seeing me, or doing any sort of examination. I knew in my gut they were wrong, so I hit Dr. Google. I was shocked with what I discovered.

The pump I had implanted was recalled, in 2011, 2 years before my Doctors put it into my body. There are known issues with this pump’s battery and catheter function, it has a significant failure rate and requires replacement. I called Medtronic directly, they verified my research and recommended I go back to my clinic and insist that they test my pump for failure. They also told me that the testing (imaging) is only 40% effective. So I fought for my testing, my clinic did the ultrasound and, shocker, they couldn’t find the problem. Again, the clinic says everything is hunky-dory, no problem with the pump! I have to remind them that the testing is faulty, especially with positional issues. Throughout this time my pump seems to be turning on and off again randomly, leaving me with 4 surprise withdrawal days a week and then 3 days with medication. It is an impossible way to function. The most hellish thing I have been through.

The only way to look for positional issues with the pump is to open you up and physically look. I am on my way to getting rid of the pump, so my theory was that we should just take the damn thing out! My clinic insisted that they must ween me off of the medications for 10 weeks before they can remove it. They will not budge on this, not even after my GP offers to manage my oral medications to get me out of it earlier. Ten weeks of surprise withdrawal while working, parenting and just plain struggling to survive. Ten weeks of paying for pain clinic office visits, we hit our very high deductible before I’ve even had my surgery. I would have never put this pump in if A. someone told me it was recalled or B. someone told me that when it breaks you have to wait 10 weeks to get it removed. 

These pumps are not what the Doctors advertise. They may be effective for a small number of patients, but there are many of us who have had little to no progress with our pain control and significant issues with the pump itself. The pump takes a lot of time, money and maintenance when they are working: monthly visits for refills and programming. They keep you tied to the Doctor who did the implant.

Pain pumps are not a healthy way out of narcotics that they seem, they are still pumping your body with the same medications that you are prescribed orally and they come with side-effects, dependance and withdrawal just like your oral medications. In the end, all of these medications are running the same pain cycle in our brains, leaving us high and dry. After more than 10 years of pain, I am the most disappointed to discover this.

Next Tuesday, almost 3 years to the day, my pump will be surgically removed and by the end of the month I will be through the end of my medication weening process. I will never walk back into a traditional pain clinic. My GP and I are working on building a team of practitioners including a pain psychologist, chinese massage therapist, acupuncturist and nutritionist. She says if this works I have a How To book on my hands. I think, if it works, I have my life back in my hands.

Birthday Gifts

bday-candlesI am turing 40 in a week. I’ve never been one to fear aging. In the past I’ve used birthdays to inspire new life goals. When I turned 30 I ran the Twin Cities 10-mile. At 35 I decided to dump my meds to have a baby. The month I turned 32, my pain kicked in for the first time.

From that point on birthdays have also become a pain-a-versary of sorts. I have had this pain for 8 years, 2, 920 days. It has been a marathon I never imagined lasting this long. In some ways I’ve given my 30’s to this pain, and I really don’t want to give it another decade. Anxiety about it all has been blocking my view as I head over the hill.

Until today,when I had a moment in my car waiting out a stop light. I found myself thinking about a drive I made on a beautiful fall morning like today, heading to Duluth for my first year of college. 22 years ago, car packed to the gills with dorm room essentials, with everything in front of me. Throughout all of the exquisit excitement that day, I could have never imagined my life as it is today. I have a most incredible husband; two healthy, smart, inspiring little girls; friends and family who support me tirelessly; and work I’m passionate about. Basically I have everything that 18-year-old was hoping for, as I sped towards adulthood on that beautiful day in September.

I know enough about life to know that these are rare gifts, to be held close and celebrated. Whether or not I have pain as a partner today, or for the next 40 years, I am living a life most uncommonly beautiful.

I’m thinking I’ll spend this particular birthday making big plans for the next 2,919 days. I’m hoping when I look back on this day, 40 years from now, I can again say  I could have never imagined the exquisiteness coming my way.

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.

 

Sand in my shoes

swimsuitsI know it is a good summer when I can see the Chaco sandal Zs tanned onto my feet, and the swimming suits are drying on the line more days than not. The last few summers have not lived up to those measurements. Office florescence do not tan feet, and it is hard to convince a chronically pained body to haul the kiddos (and their stuff) to the beach after work.  Mellow has become the norm for what used to be my favorite season of the year. However, I have been given two unexpected gifts this year, and summer is back.

First, the pain pump I had implanted in April  is working. I have cut my oral medications in half, which also means cutting my side-effects in half. I’m AWAKE! I rarely need my nausea meds, which I was taking twice a day. And, I still have room to improve, slowly adding more med via pump. It is a revelation.

Second, my difficult recovery from the pump implant surgery led to the nudge I needed to leave my 40-hour a week desk job. Thanks to the investment and trust of my family & husband, I am now working for myself from home. It has done more for my health and wellbeing than any procedure or treatment has in 7 years. The ability to rest when I need it, to get better exercise, and to reduce the overwhelming stress has had major effect on my disease, even more than I imagined. More importantly, I have the bandwidth to be the parent I’ve wanted to be.

I really didn’t realize how deep into survival mode I was. There are things we do because we have to, because our families are counting on us. Even when we are sick. And this transition isn’t easy, we are far from fiscally stable.  But there has to be something in the fact that the last 2 months have been the best I can remember, I am becoming a person I recognize, and life is worth getting-up for again.

So, it seems I’ve received more than two gifts. If you count each day I take my girls to the pool, every pill I skip and every day I end sun-tired, instead of sick-tired, I am prosperous beyond imagination. I hope you too find lots of sand in your shoes this summer.

The Littlest Rabbit

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