Archive for the ‘Uncategorized’ Category

Mama Unicorn

os-disneynature-bears-trailer

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.

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.

 

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.

Birth Story

I am not immune to the allure the birth story. Any mom worth her salt jumps at the chance to share all of the gory details, so please forgive the length of my indulgence and here we go:

This story is quite the opposite of my first tale involving 36 hours of  labor – leading to a grand C-section finale. My Doc recommended against a V-back, guaranteeing we’d have her at the knife and allowing her to control my pain throughout the scheduled surgery.  So we packed up our eldest, took her to Grandma’s house for some insane spoiling and headed for the hospital, labor-free.

It is a bizarre feeling to know when you will give birth, the calm seems ridiculous in some way. I was far more aware of the delivery this time (and the epidural needle), it was incredible and terrifying to take in.  I will remember the very first moment I saw my little one, my Doc popping her squirming, screaming body up over the white sheet, for the rest of my life.

She was born as perfect as perfect can be. Not a single symptom of withdrawal. Not a single symptom…it still fills me with a sense of relief.

For those following along for the pain details, here’s what went down: My Doc left me on the epidural for 24 hours and it worked beautifully. It got me through the worse day of recovery without  hitch.  It was my first day free of pain in 6 years.

The hitch came the next day when they removed the epi and put me on a dose of pain killer. For some reason it was  1/4 of what I usually take and I crashed epically. Enter amazing nurse who ran interference and managed to serve up enough morphine to get me back to sanity. It took 8 hours and I had to drop breastfeeding for  two days to clear the meds from my system.

Enter also useless pain Doc. After the main surgical pain is taken care of, the treatment goes to the hospital’s specialist  – the one damn person I didn’t meet with beforehand. Although he never came to see me in my room, he threw down the red flags and spent 2 days refusing to adjust my pain prescription, calling my Pediatrician to report my drug use. The posse paid off and my Ped came to the rescue – delivering copies of our plan and research. In the end, the pain Doc did visit my room, he thanked me for teaching him something about chronic pain and childbirth. Yes, this man is the only pain consultant in the entire hospital. I take no pride in teaching him, just disappointment at the state of the institution’s pain management.

I resisted the urge to smack him in the forehead and thank him for two days of crazy-ass pain. I was just too delirious with baby joy. We tucked our little one into her car seat, next to her big sis, and headed to our little home… grinning the whole way.

Fence Jumper

I must have been a real ass in a past life. Karmic-ly, I am certainly paying for something. Band-aids are the only things that don’t freak me out in a Doctor’s office, it helps if they have Barbie on them. Unfortunately, I seem to have drawn the short straw when it comes to a need for clinic visits – I’m in and out of one medical office or another weekly and I just can’t seem to get accustom to the anxiety involved.

I had an MRI today, open and sitting (preferable to the original casket version). No needles or contrast required, I just had to sit there and watch the big screen TV for half an hour. I spent most of it trying not to fall asleep, explaining to the Tech that I had an 8 week old baby with colic, so he wouldn’t think I was a narcolept. By the time I left, I needed to curl up under my quilt, fetal style and submerse myself in Stars Hollow until the world felt right again.  Instead, I grabbed a cup of coffee and went back to work, annoyed by this seemingly unjustified state of emotional exhaustion.

When I’m feeling high minded, I think this constant brush with my mortality has me tweaking. It’s not something I’m conscious of, but somewhere my body is telling my brain that pain = death. Most of the time I think it has more to do with disappointment. Every visit, procedure and new medication brings with it the possibility of a cure. After 6 years, they feel more like the beginning of another failed attempt. Hello wall, here’s my head.

I’ve been reading a brilliant book, The Pain Chronicles by Melanie Thernstrom, and she mentions a study in which dogs are subject to chronic pain over a long period of time. The study found that 9 out of 10 dogs will lie down and just take the pain, while one dog continuously attempts to  jump the fence. I’m a fence jumper.  With the jumping comes the fall. The study fails to mention whether or not the jumping dog comforts his failed attempts with Gilmore Girl reruns, but picturing it kinda turns this crap afternoon around, doesn’t it?

The Littlest Rabbit

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