Thinking about the future

Have been doing my physical therapy each morning like a good little patient.  Making sure I spend time walking throughout the day, do some gentle yoga a few times a week on my non PT days.  The more I move, the better I feel.  Standing around, sitting around only makes me stiff and uncomfortable.

My PT Danielle has still been out sick after her trip, so I have been bounced around to whomever is available in the meantime.  I’ve seen some assistants, some PTs, and then last week none of the openings would work with my schedule, so I did my exercises on my own, and scheduled a deep tissue massage.

Now this is no foo-foo spa type massage, although I enjoy those too – but a deep tissue massage to really get the muscles, and more importantly the nerves to release.  I was a mess, holding lots of tension deep in my muscles from months and months of pre-op sciatica spasms, and then the whole post-surgical lock down of all the muscles trying to protect my back.  Chronic pain will do that, you just tighten everything up without thinking….but at some point it needs to release.  Jerry spent a good hour and some change starting with my feet and working up to my shoulders and upper back.  I had knots deep in my calves, thighs, hips, butt, and beneath my shoulder blades.  He was able to get most of them worked out, but it left me with some pretty tender spots for a few days as they healed.  I’m feeling better now, but anxious to get back to m PT appointments with Danielle.  Hopefully no more last minute cancellations for her.

I’m anxious to work more on flexibility and strength building – I know I need the core strengthening and stability, but I’d like to work on rebuilding strength and flexibility, and find some things I can integrate into my preferred yoga and walking and spin bike work – rather than just the clinical do this many reps of this particular exercise.  I know I need both, but I’d sure like to feel like I’m adapting to real life again.

I’ve also been preparing to get back to soap making.  I need to order a few oils and supplies, which I will do this week, and then hopefully next week I can make a batch or two of soap.  I made the decision not to do any craft shows this fall, which feels a little strange honestly, but I knew I needed time to heal completely.  My intent was that I could then take the time this fall and winter to stock back up on soap, and be ready for spring without all the normal chaos of trying to squeeze it in.  I have a couple orders for Courageous MRKH soaps that I need to fill, an order of foot cream I need to make, and then just start working on restocking and getting caught up on production for spring.

I feel like I’m making good progress, able to think less about the specifics of recovery – and more about what my future looks like with a fused spine.  How to regain my strength and flexibility, and get back to “normal” life again.  I’m a week shy of 3 months post op, so about 12 weeks post op now.  You know you are far enough down the road to recovery when you think of how many months instead of weeks!  I’m feeling good.  Still have some tired and sore days, still have some days where the nerves are pissed off and I’m uncomfortable.  But they just serve to remind me to be kind to myself, use my ice, rest when I need to, stretch when I need to, and MOVE when I need to – and to rest.

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Surgery Tomorrow Morning

Alright, so after church this morning I grabbed the pile of “don’t forgets” and loaded up my stuff into the car, and off we went to Post Falls.  Good thing I had my nausea bands, since I was relegated to the back seat!

Arrived in Post Falls just fine, unloaded all my stuff, and now we are going about our evening nothing too exciting to report.

Plans for this evening as it relates to surgery tomorrow:

  • Shower before bed with half the bottle of the special soap, clean clothes, and off to bed.
  • No food after midnight.
  • Clear liquids acceptable until 5am.
  • Shower in the morning with the rest of the special soap, clean clothes and be ready for the hospital.
  • Check in at 7:15, and then well…surgery of course.

I will be having a spinal fusion at L4-L5 and L5-S1.  My doctor expects the surgery to last between 4-6 hours.  He will have me up and walking the same day, and I will be expected to walk frequently from the very beginning and increasing as the days go by.  Walking will be my primary form of recovery and rehab.  I should be in the hospital 1 or 2 nights, and then discharged for recovery.  I am staying in Post Falls until the weekend, before heading back home.

My doctor said that most patients are back to work after 2 weeks, I have planned to take 3 weeks off and return to the office after labor day.  I can’t drive while on narcotics obviously, so that signals to me that hopefully most of the pain of the procedure will dissipate in a few days.

I will try and update the blog as soon as possible when I’m coherent – Feel free to reach out to me via email, Facebook, and on my phone – but please note:

There was a wild fire that burned the main network center for my cell phone provider – They have a network outage that means I do not have cell voice or text message.  They are working around the clock to restore services, but at this point – text and calling will not be reliable until they resolve that.  So I’m not ignoring texts, I promise.

Alright, that’s all I’ve got for tonight.  Time for dinner, and then shower and bed.

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Blessings to each of you, I appreciate your support through this journey!

MRKH Type 2 – Surgery Required

So I got the phone call yesterday afternoon from my neurosurgeon’s office – insurance APPROVED my surgery!!!

While I maintained my composure (barely) while talking with the woman in the office and asking a few questions, as soon as I hung up the phone, I lost it.  I know, I know – I cry about everything!  But I was holding a tremendous amount of tension over the pending approval – so getting that call was monumental to me!!  I knew that it had set in motion a whole lot of things needing to be done in a short amount of time.  But let’s back up a few steps…

If you don’t already know, I was born with MRKH – 4 letters that would define much of my adult life.  I was born without a uterus and would never be able to carry a child.  I have MRKH Type 2 which means that I also have a pelvic kidney, a mild curvature in my spine, and apparently – I tend to wear out my joints and connective tissues in them much sooner than most people.  As I get older, the spine and joint issues tend to come into my awareness more and more, and the issues of not being able to carry a child are less of my focus.

Many people, even those very close to me, do not know that I live with chronic pain.  My body hurts somewhere most of the time.  As the pain focuses in a particular area and I become aware of the fact that it wakes me up at night, or I am taking something for the pain every day, I have learned to be a good patient and talk to my doctors about it.  Over the years this has lead to surgeries on both shoulders and both feet.  I’ve gone through many MRI scans, rounds of physical therapy, visits to the Osteopath and Chiropractor, and had steroids injected into joints all over my body.  I do everything I can to keep myself healthy and mobile within the limitations my body sets.  Currently, I’m dealing with pain in my low back – and that is my current focus and why I’ve dusted off the blog to tell my story.

You see, I’ve always found great comfort in writing – it helps me to heal and to process what I’m feeling with greater clarity.  I’ve also found that reading other people’s accounts of their own recovery gives me an additional level of comfort when I’m facing a new challenge.  So as I embark on this latest surgery journey, I made the decision to use my blog to document it,  and as a way for family and friends to stay informed.  If you want to stay up to date, I encourage you to subscribe to the blog using the buttons over there on the right side>>>>> so you will receive an email when I post something new.

Ok – the nitty gritty of what I’m feeling, what I’m doing about it, and why I’m headed for surgery.

Generally speaking my back hurts – low back pain is very common and there  are any variety of causes.  My specific diagnosis is Degenerative Disc Disease, Spinal Stenosis, and Spondylolisthesis.  I did not have a specific injury that caused this, it’s just been brewing for most of my life.  I have general boney aches in my low spine as a result of the discs not providing the cushioning they are supposed to, and there is very little space between the vertebrae.  What once was memory foam is now rough cut lumber.  The Spondylolisthesis comes into play as displaced vertebrae which adds to the Stenosis or narrowing of the spinal column.  These things are causing pinched nerves – which in turn cause both radiating pain and muscle spasms, oh…and numbness in my toes.

So what am I doing about it?  Well, as much as I can.  I take joint supplements and NSAIDs.  I use a heating pad to help release the muscle spasms.  I see a massage therapist regularly. I do gentle yoga stretching and flows to keep moving as much as I am able.  I have a few additional spine stability and core strengthening exercises I learned from physical therapy that I do throughout the week.  I eat well, and try to get cardio in by either walking or riding my spin bike a few times a week.  But I don’t sleep well and wake often in the night.  Standing for long periods of time makes my muscles lock up and legs ache.  I can’t lift heavy stuff without pain.  But I try and do as much as I can, and live as normal a life as I can.

So why surgery?  Why now?  Well, because it’s affecting my daily life.  As my doctor said – my spine is all jacked up.  No amount of physical therapy, injections, and adjustments are going to fix the bones that are the root of my problem.  After a long discussion of pros and cons, what to expect for recovery, and additional options to consider,  he put in for pre-approval for spinal fusion.  Yesterday I received the call that my surgery was approved.

On your mark,

Get set,

GO!!!

Next week I will get a variety of lab tests done, and an EKG. Those results will be sent to my neurosurgeon and to the hospital where I am scheduled.

I already signed all the consent forms, and received my pre-op instructions when I saw the doctor 2 weeks ago, so I don’t need to go back to their office for anything.  I have my pre-op shower soap stuff already, so once the lab tests are done I just wait for the phone call from the nurse for my pre-admission conference.

I am scheduled for surgery August 13th.  I will likely spend 1 or 2 nights in the hospital before being discharged.  Since the hospital is about 2 hours from home, I’ll stay in the area an extra few days before venturing home to continue my recovery.  I expect to be off work for 3 weeks, and then slowly return to full time as I feel ready – and when I can comfortably drive myself too and from work.  I will have movement restrictions as my fusion heals – no lifting more than a gallon of milk, no bending, twisting, stretching of the lower spine – and just generally REST and HEAL for the first 6 weeks.  I will be encouraged to walk often, several times a day even at the very beginning.  After 6 weeks I’ll begin physical therapy.

Alright, that’s what’s going on and why.  This blog will serve as the primary way of keeping in touch through this adventure, so be sure to subscribe if you want to keep tabs on me from a distance.

Having MRKH has added quite the variety to my life – with both challenges and accomplishments.  I can celebrate my differences, and embrace the life I’ve been blessed with….even when it means another surgery.

Psalm 94:19 When anxiety was great within me, your consolation brought me joy.