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One Year Post-Op Spinal Fusion

I’ve been thinking about this post for a while now. For obvious reasons, it’s time to update you on how my back is doing, but I’ve also wanted to just kind of catch you up on life in general.

So a year ago today I was in Post Falls, Idaho having surgery. I woke up after surgery the proud recipient of 6 titanium screws, 3 rods, and 2 intervertebral cages and a 6 inch incision. Oh…I also had a small drain and a catheter in. Within a few hours they had me up and out of bed and walking (ok shuffling) down the hallway. Overnight they transitioned me from a morphine pain pump to oral pain killers – and made me get up every few hours and walk. Early the next morning they took out the catheter and I had a visit from the physical therapist who showed me how to put on the back brace and made sure I could walk without assistance and go up and down stairs. I was taught how to “log roll” to protect my new spine hardware – and minimize my pain – everything had to move as a unit – knees, hips, and shoulders all at the same time. I stayed a second night in the hospital and the next day I had the drain pulled out and was able to take a shower before getting dressed in my own clothes and headed a few blocks away to stay at my pastor’s home for a few days before I headed back south to my own house.

So the biggest question I’ve gotten when folks hear I’ve had spinal fusion is, “What did you do to your back? Was it an injury or car accident? ” Nope – it’s just me and the way my joints wear out. I’ve probably had a few muscle injuries over the years – pull a muscle moving hay or whatever – but I didn’t fall off a roof. I wasn’t in a car accident.

I have a condition called Mayer Rokitansky Kuster Hauser Syndrome (MRKH) Type 2. I was born with an incomplete reproductive tract – missing my uterus, cervix, and the upper 2/3rds of my vaginal canal. I have a pelvic kidney, mild scoliosis, and all the joints in my body tend to wear out quickly. Over the years I’ve had surgery on both of my shoulders, both of my feet, and now my back. In all cases, there was considerable damage to the cartilage and the bony structures of the joints themselves. For my back specifically I had advanced degenerative disc disease, paired with spondylolisthesis, and stenosis. Basically that means that I had two vertebrae that had slipped out of place causing bone on bone contact – creating arthritis and narrowing of the canal where the nerves and spinal cord pass through, and it destroyed the discs. I had pinched nerves causing issues of sciatic pain primarily on the right side, with numbness going all the way down to my toes. I had spine and hip/pelvic pain on both sides with daily muscle spasms that I just sort of lived with for years.

So after an MRI and a visit to the top spine specialist in the area, I was scheduled for surgery. I am now fused from L4-L5 and L5-S1 – so my sacrum between my hip bones and the two lowest vertebrae are all now fused together with screws, rods, all the bone that grew together.

Over the course of my recovery I’ve had a few struggles and set backs, as you might expect – but at the end of the day I’m glad I had the surgery. I am walking everyday, and I do yoga during the week – continuing to rebuild strength and flexibility. I have to work specifically on strength and support in my core – deep core muscles to support the spine specifically – while I’d like to have a flat toned tummy – that isn’t my priority. My priority is having strong and balanced muscles that keep me healthy and my spine supported – which is more than a 6-pack abs package…it’s deep pelvic floor muscles, it’s strong and flexible hips, its the glutes and hamstrings doing their part, and it’s flexibility and mobility in my upper back as well. It is a well rounded and planned out series of routines that keep my whole spine and body in good shape. I still struggle with the stability of my SI joint specifically because it wants to take over the mobility that my spine lost. I have to remind myself to move my hips with my waist and use the deep pelvic muscles to keep everything moving as a unit. It’s the twisting movement that gets me in trouble. My lower spine just doesn’t articulate anymore, and so I have to turn ABOVE the fusion, and keep my spine square within my pelvis. What tends to happen now if I’m not paying attention is that I turn further than my spine is capable of, and so the lower spine where it’s fused tries to turn and “displaces” itself out of the pelvis. My hips/pelvis must stay straight and square and my turn needs to originate basically at the rib cage. When it comes to my workouts, I have to work specifically the glutes and hips to keep the pelvis strong, and not just my abdominal core. It’s been an interesting challenge and change of mindset. But let me assure you, my body tells me when I’m not following the rules – having my SI joint out of whack is no fun – but I’m learning what to do to help ease it back into place – and more importantly what to do to help prevent it happening in the first place (aka do your therapy and pay attention to how you twist!!)

Along with the daily walking and yoga and core work, I’ve also worked very hard to fuel my body in a much healthier way – I’ve cut out all artificial sweeteners, and focus on lean meats, lots of vegetables, some fruit, and limited starches and whole grains. Sure, I still eat the occasional sweet treat – but I feel better when I eat better and do my exercises. I use a step & activity tracker on my phone, and I track my calories everyday too. Each day I take a handful of supplements – a multi vitamin, calcium, glucosamine, chondroiton, MSM, Vitamin E, and collagen – and I drink as much water every day as I can. My goal, and my doctor’s goal is to try and keep my body and specifically my joints as healthy as possible to avoid more surgeries. Bottom line, I’m glad I had the surgery on my back. It wasn’t a walk in the park – but it has made it possible for me to be much more active and pain free than I was a year ago. This recovery process has taught me patience, resilience, and as funny as this might sound, it’s taught me about direct consequences. Just when I think I’m fine and should be able to whatever I want – my body reminds me that nope – you can only do what you are CAPABLE of doing. That’s not to say that I don’t challenge myself – but just that I have limitations that are reinforced with titanium – and recovery is a long slow road.

Kind of like life, right? We aren’t here for just a moment, we are here for a lifetime. We have opportunity every day to glorify God – to allow His light to shine through us and onto those we encounter each day. So smile! Hold the door open for someone. Wave at a child. Tell that young girl she is beautiful. Visit a friend in the hospital or nursing home. Pray for someone. Share the good news of God and His Glory that is waiting for each of us, and God promises us it will come to those who believe and trust. How have you been a blessing to someone lately?

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Transitions

Today is officially the longest day of the year, the start of summer…and it’s 60 degrees, grey and scattered rain showers. Last Friday was nearly 80 and sunny and glorious – go figure.

At the beginning of next month, my new boss officially starts in the office. My boss of the last 15 years is retiring, but not officially until the beginning of August. So it’s a new season starting in our office as well.

It’s been 10 months since my back surgery, and I’m in the midst of my beginning of summer annual medical checkups. Made all the appointments, showed up for my mammogram last week. Next week is fasting blood work, and then my physical the following week. I feel good and have no great concerns to discuss with my primary care doctor, so hopefully this will be a smooth slide into the summer without more tests and appointments to think about.

How’s my back? Well, “good” or “better” are the easy answers. It’s different than before surgery obviously, since I have hardware holding me together, but it’s also been a long recovery process (well documented here on the blog). Today I don’t have chronic low back pain. I don’t have constant sciatic and muscle cramping in my back, hip, butt, or thigh. I don’t have the constant ache, and grabbing my low back when I twist or move funny. I don’t have to take over the counter or prescription medications to allow me to get through a day or night. I don’t have to have my heating pad waiting on the couch for me to come and sit for a few minutes and ease my muscles out of a cramp. But I’ve worked my butt off in physical therapy to both recover from the trauma of the surgery I had, but also to strengthen the muscles I haven’t used for years to support my spine. It’s an ongoing process of listening to my body while also pushing myself to improve.

I still have some lingering nerve issues, and recognize that I probably always will to some extent. Some of it is damage done before the surgery from my spine being unstable and pinching the nerves (sciatic)- some surface numbness on my right leg in several places that was present before the surgery….is still there. But the cramping that was an everyday thing before surgery is gone on the right side. Some of it is also from the surgery itself – I had a lot of sciatic cramping on the left side after surgery (I whined about it for weeks), and while the cramping has resolved – I still have some residual nerve pain in the top of my left foot. I whined about that quite a bit and worked on it during physical therapy – and while it’s vastly improved – it’s still there. But I’ll take a little bit of surface numbness and a touchy left foot over debilitating daily pain and muscle cramps any day!

I no longer have to get up 20 minutes early just to go through a series of stretches to wake up my muscles. I still do a series of range of motion stretches each morning just to get the blood flowing a little before my shower – and work off the sleep haze – but it’s not 3 sets of 10 repetitions of this one exercise, and then 3×10 of the next one, etc. During the week, I do yoga on my lunch break – specifically targeting my core strength, my hips, glutes, and hamstrings, and actually working on my upper body strength too. I have several dynamic flows that I work through to strengthen my body overall – not just focus on spine surgery rehab. Throughout the week I still end up doing all the same kinds of exercises that my PT taught me to do, and I’m seeing great progress in my strength.

I have tried and tried to like the exercise bike I bought (used) last year for cardio – but I just don’t. It caused me more body mechanic issues throughout my recovery because it’s basically just one movement in the same position over and over again – primarily focused on my hips and IT band. So I stopped using it at the suggestion of my PT when my IT band kept flaring. Instead I walk as much as I can. On the weekends I walk in the morning before a shower. During the week, I make it a point to get up and walk at work as often as I can…and then walk in the evening when I get home. Walking was the thing my surgeon had me doing immediately after surgery – like the same day….with a walker and a catheter in…I was walking the hallways every couple of hours. On day 2 they took the catheter out and I had to get up to use the bathroom….and walk the hallways every couple of hours. I have continued that pattern throughout my recovery. During my PT, I would start out on the treadmill for 10 minutes before seeing my PT for the rest of my appointment. As my rehab continued, I came to love my time on the treadmill, and as weather permitted I walked my driveway at home too. When I was allowed back on my exercise bike, and started having trouble with my IT band, I started thinking about selling the exercise bike and getting a treadmill. That’s still a discussion at our house – but I haven’t been on the bike for months now….and my IT band hasn’t flared in the least.

In January I made a concerted effort to start eating better, and tracking my food each day. I haven’t been perfect, but I’ve been much more aware. I’m down about 14 pounds, and the yoga has helped me trim off over 6 inches overall. I’ve been able to recognize what foods I can eat and continue to lose weight slowly – and I know what foods stall me out completely. My goal isn’t a number on a scale or a clothing tag – my goal is a healthy mind and body combined. My current routine is getting me closer and closer to that point.

The final transition I’ll talk about today is menopause. Last year about this time, my doctor confirmed/agreed with me that I was likely peri-menopausal based on what I had been noticing in the preceding year. Menopause is a tricky thing to nail down in women like me with MRKH. Most women experience a change in their monthly menstrual cycle – and they notice the change because their pattern of bleeding (their period) changes. But I don’t have the benefit of being able to track differences in menstrual flow. Over the years I came to recognize subtle changes in my body during certain times of the month…and asking very pointed questions of my close girlfriends. I learned to notice not just pre-menstrual symptoms of emotional changes, bloating, tender breasts, and acne breakouts, but also the more subtle changes that came with ovulation. I actually had a pretty regular cycle that once I understood what I was experiencing, I could work to manage a little more effectively. But without the “period” to mark the date on the calendar, and obviously no worries of an unplanned pregnancy ever – it was just interesting to note what my body was doing. In the last 2 years I began being more aware of the fact that my “pms” symptoms were happening less frequently, and not near the end of the month as they used to be. Add in a whole lot of tossing off covers in the middle of the night, and some changes with vaginal moisture and elasticity – and my doctor marked my chart as peri-menopausal. We had a brief discussion last year about hormone replacement and options available – but I declined any formal treatment. I had a baseline bone density test last year which was totally normal, and I read a couple of hand-me-down books on menopause. Knowing this is a natural progression, and understanding that everyone’s experience varies greatly, I’ve opted to be preventative, but minimalist in my journey. I’ve added a women’s multi vitamin, vitamin E, and collagen for joint health, and made sure that I am eating a balanced diet that includes lots of variety in both vegetables and proteins, and a moderate amount of (mostly) whole grains. Thus far I have not been overly bothered by crazy mood swings, hot flashes, excess fatigue, thinning hair (it gets grayer each year, but it’s still thick and crazy curls), and I’m still able to effectively manage my weight. All in all…I think I’m doing just fine on this journey.

As I think about all the transitions going on with and around me lately, I try and remember to just put my trust in God. He has a plan, and my part in this plan requires me to act with compassion and humility, to trust Him completely, and to practice patience with His timing.

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The Day That Changed My Life

We all have defining moments in our lives; ones that shape us into who we are at the very core. Experiences that drive change – sometimes good change, sometimes regrettable change – but change nonetheless. Over the course of my life I’ve had several such moments, and I’ve weighed in my heart and mind which are the ones that have changed me the most. Unquestionably, the day I accepted Jesus as my Savior at the age of 10 was a turning point in my life. When I was baptized two years ago, it was another moment of remarkable change in choosing who I wanted to be and what direction I wanted my life to take. But those were conscious choices to change – rooted in what has developed into an incredible faith-life that is spent fulfilling my purpose to glorify God.

Today, I’d like to take you back 30 years – to a day that changed my life, and I had no choice in the matter.

May 16, 1989 – my good friend Janine picked me up in the early morning and drove me to the hospital for a scheduled out-patient surgery. We arrived at the hospital and checked in for my diagnostic laparoscopy. When I woke up in the recovery room, I was given the news that I did not have a uterus. This is the day that MRKH entered my life.

I probably sum it up best on my Courageous page –
On that day I was told that I was born without a uterus, cervix, and the upper 2/3 of my vaginal canal – I had a birth defect that no one could see, and I would never be able to carry a child. On that day, my world quietly shattered. My hopes, my dreams, my plans, everything I thought I would or could do with my life…shattered. Yet, somehow my life continued. As I look back on my young life, the things I did and didn’t do…I look back at a young woman who learned to be Courageous.

In so many ways MRKH has shaped my life. I have grieved deeply over a life changed by MRKH. I have faced off with clinical depression. I have lived through abusive relationships. I have conquered fears. I have learned that not only does MRKH mean I won’t have a period or carry a child, but for me it also means I have kidney abnormalities and joint and skeletal issues as well. Over the course 30 years I’ve had 7 additional surgeries because my body wears out joints very quickly. When I was 23 the sports medicine doctor who operated on my shoulders said that I had the shoulder joints of a 60 year old. (um…thanks???) When I was 41 the podiatrist had to fuse my toe because the joint was so damaged there was no saving it. Last year (9 months ago actually) I had my spine fused because of degenerative disk disease and spondylolithesis.

But this post is not about the details of my entire medical history (there are plenty of posts about that in the archives) – this post is about looking back and reflecting on the day I was diagnosed with MRKH and how over time, I’ve made the best with what God has given me.

For starters, I’m still blessed to call Janine one of my best friends, all these years later. Turns out she struggled with infertility too, and ultimately adopted 2 beautiful children. She has been a solid rock in my world for some of the most trying times, and even when we go years without visiting in person, we still pick up right where we left off. She encourages me, prays with me, and reminds me that God puts the right people in our lives exactly when we need them.

While I ultimately never became a mother for all variety of reasons, I have spent my life working with youth and young adults in a wide range of rolls. I’ve been a mentor and not a mother. I’ve been a 4-H leader. I’ve worked with our teen-girls youth group. I’m blessed to be an aunt to 3 awesome nephews, and 2 beautiful nieces, one of which gave me a great-nephew too! I’ve worked for the last 15 years in a university setting where I work with students training to be teachers. This past spring one of my students said this to me, ” I love how you’ve developed your life story into one in which your career ultimately focuses so heavily on flowering integral intellectual fertility within the minds of countless kids, both within Washington and beyond. ” That one got me right in the feels. All of these experiences have given me the chance to influence many more lives in my lifetime. And I love that I can watch these folks grow and prosper in their own lives. I celebrate their victories, watch them graduate, get married, and I pray with them when things get rough.

As I’ve journeyed through my 40s, I’ve felt the impact of MRKH in a variety of ways. I’ve probably experienced the most change and healing during this time. I’ve accepted that I’m a mentor and not a mother. I’ve focused my life on physical and emotional healing. I’ve had 4 surgeries (both feet and my back) that have tested my resilience. I’ve fought through depression and grieved the death of some incredible people and beloved pets. I got a full sleeve MRKH tattoo. I’ve come to rely on the grace of Jesus to get through everything life throws at me. I found other MRKH sisters just like me, and ultimately partnered with the Beautiful You MRKH Foundation to create the Courageous Project. I can’t begin to tell you difference in my life that has made. Sharing my story. Raising awareness. Meeting some incredible women – Amy, Kay, Christina, Dawn, Hailee, Ang, Britt, Erin, Jaclyn, Kristen, Jen, Barb, Chrissy, Allison, MaryBetsy, Kristen, Lizzie, Ayala, Hanah, Krystina, Elyce, Christie, Lyndsay, Lindsey, Julie, and so many others. The love that we share, the way we support each other, the hugs, the laughs, the tears…it has been, and continues to, inspire and change me.

And when I truly embraced who I was – that is when I surrendered it all to God. I’ve grown as a woman and sought to serve God’s Kingdom. I’ve launched a women’s ministry through a Facebook group of MRKH sisters – MRKH Journey through Faith and started a women’s ministry group at our church we call Ladies’ Night In. I’ve been ordained and serve as Head of the Board of Deacons for our church. I’ve completed training and been commissioned as a Stephens Minister. I’ve never been as complete and fulfilled as I am today.

30 years after learning that I had Meyer Rokitanksy Kuster Houser Syndrome, today I’m living my best life.