Transition From Zero Adaptive Devices and Life Modifications to Many

Byline: Martha


I don’t remember a time when my back did not hurt. I know there was such a time, but I do not have an active memory of it.  In my early twenties I played a joke on my boss and moved his very heavy oak desk by myself to rearrange his whole office.  I ended up with a back injury that put me down for several weeks and I had to wear something called a “trochanter belt”. In those days I don’t think they made them nice and smooth and sleek and held with velcro, like they seem to now. Mine was canvas and you laced it on each side with hooks and eyes, but it did help.  After recovering from that injury I was still able to do hiking, aerobics etc. and I do not remember feeling limited, or having to adapt my life to my physical capabilities, but I think that was the beginning.

 

At this stage of my life (I am 52) I have had to incorporate a walker, a wheelchair when traveling, crutches, a series of braces, a handicap sticker and currently the use of a motorized scooter at big stores.  I don’t have to use all these things at once and some days I use none of them, but they are all part of the arsenal of daily living.  (note, these are not affiliate links to follow, they are just to show you what these items are.) I have at least 8 grabber/reachers in my home and office and car http://Link: http://a.co/d/9VOpqDk.   I cannot bend over. I cannot pick things up that are more than about ten pounds. I have to wear flats…most of the time sneakers with adaptive laces in them because I cannot get down there to tie them  http://Link: http://a.co/d/e3uivgL, and I slip them on using a long-handled shoe-horn http://Link: http://a.co/d/7oEWYqu. I put my socks on with the help of a sock-assist. http://Link: http://a.co/d/bJZe8F9 I need a stool or a curb to climb into my husband’s truck.  I can drive, but only in my own car with some adaptive equipment that allows me to see what would otherwise be a blind spot, and only if the pain is not so bad that I need a narcotic. We re-did our master bathroom, closet, laundry room and now kitchen so I can utilize them alone and safely and I feel VERY fortunate to have been able to do that. I am not complaining, I am just telling you how my life is.  If you just look at me, I look fine. That’s true of many people with chronic pain or illness.  But I am not “fine.” I am literally in pain 100% of the time. Sometimes the pain is low-level (meaning a 2 or 3 on my own pain scale) and sometimes it is so hard to bear that I consider going to the hospital (which I have only done if the pain is a 9+ on my own pain scale). I’ve learned that my pain scale is different than other people’s and apparently I have borne a lot more than most people, mostly without complaint and still working.  Again, not bragging, just telling you how my life is.  I do not judge others with chronic pain or chronic illness because I have not walked (or ridden) in their shoes, but I have seen how often that happens and how frustrating it is.

My family’s life is different than it might have been without these issues. My husband has had to leave his career as a massage therapist because of my five surgeries in two years, and he has to do a lot of the work in our house (or has had to prior to modifying parts of our home), including taking the dogs for walks because they are too strong for me, getting things that are upstairs or downstairs, unloading groceries, getting anything at all that is even slightly heavy, Sometimes he has to help me in or out of clothes. He worries if I am driving and often drives me to work and picks me up.  He currently does not go long distances away from home (like more than several hours)  in case I need him. I have not been able to keep commitments to my kids or visit them when they are gone…I have a daughter studying in Amsterdam I cannot currently visit. My youngest daughter has her last dance show at school and I cannot fly there currently because my pelvis may be fractured yet again. Again, I am not complaining, I am just telling you about life.

So here is the longer version of “what happened.” 

As I moved into my 30’s, my neck was more of a pain point than my back, but my back continued to hurt, and I also had migraines all the time…literally for weeks at a time. I ended up in the hospital for 4 days at one point when I was 39 and at that time they thought I had experienced a small stroke.  Eventually it was determined to have been a particularly bad migraine, which left me with some damage. That whole thing led to a diagnosis of “chronic cluster migraines,” which led me to a very persistent doctor who helped me with those, and also led me to a neurosurgeon for the first time.  The migraine doctor helped me find a way to treat the migraines and they were pretty well controlled eventually with medication. The  neurosurgeon told me I needed to have two discs removed/fused.  At 39 I simply was not prepared to hear that and told him no. 

So, that was when I began trying almost everything else. I did physical therapy for years.   I went to a chiropractor for a while I did cortisone injections. I worked with a personal trainer. I tried another physical therapist, and traction. I had breast reduction surgery to remove the very heavy weight hanging on my shoulders and neck (and removed about 5 pounds of tissue then). Eventually I landed at Dartmouth Hitchcock medical and found a fantastic team there, who gave me some relief in my neck via radio frequency ablation. https://www.dartmouth-hitchcock.org/pain_mgt/radiofrequency_ablation.html  That was a scary procedure because they go right into your spine but it made me feel SO much better!  It felt so much better for about six months each time I did it, but it didn’t last and did not solve the underlying issue.  By that point both my neck and back hurt and my life activities were getting limited. I couldn’t hike, couldn’t stand for long periods and couldn’t even go shopping with my kids at the mall without needing to lie on a bench crying.  

Work was my main activity, because as the primary breadwinner for the family, my work was a very important thing for the whole family. Everyone else ultimately had to make plans around whether my back or neck or both could handle it. I missed stuff a lot.  And I couldn’t exercise effectively so I gained weight, which did not help my back or neck,. At this stage I was in my mid-40;s and my activities were limited but I adapted with rest, and help from my family. I didn’t need any other help at that point.

In 2014 we moved to Colorado.  About a year and a half into my new job, at a work retreat with our entire leadership team, my left arm went totally numb. It was scary.  I ended up i the emergency room the team there did an MRI and the ER doc came to tell me “your neck is totally jacked.”  That was the exact phrase.  And so began a journey to figure out the problem and the solution. I went first to a very good neurologist, in hopes that there was something to do for me that was non-surgical.  He took one look at the MRI and referred me to a neurosurgeon who he respects very much and is well respected in the Denver area.. When the neurosurgeon saw me he said that I had very advanced osteoarthritis and degenerative disc disease needed a three level cervical fusion and was at risk of paralysis if I did not do it, not by just standing around but if I fell, was bumped or was in a car accident. That was sobering so I finally agreed to do it.

 In June of 2016 I had my first spine surgery….an 8+ hour procedure done in two parts to do what turned out to be a 4+ level fusion.  They went in through the front of my neck to fuse levels C3-C4  (an anterior cervical discectomy and fusion), http://bit.ly/ACDF2018 then turned me over and went in through the back to fuse levels C4-C5, C5-C6, C6-C7 and stabilize the whole thing with titanium rods and screws down to T2.  https://www.spinemd.com/treatments/posterior-cervical-fusionThis was a very difficult recovery, and I was terrified throughout most of it because my neck felt so unstable, and also because I choked on food and pills and water (because my trachea was moved out of the way for several hours during the surgery and took a while to recover). There was also a lot of shoulder pain after this surgery because the shoulder muscles are pushed out of the way to get to the spine and take a lonnnngg time to heal. I wore a hard cervical collar for 12 weeks, including while I slept, and by the time that was over that collar was a friend.  When all was said and done, even after 6 months of physical therapy, I have very limited range of motion of my neck, particularly up and down but also side to side.  

Side and front view of Martha’s cervical fusion
It took a very long time to heal from that surgery and I thank heaven that I was young enough and strong enough to get through it more easily than a lot of people apparently do.  Then the back pain amped up.  Back to the surgeon and lots more imaging and discussions.  My advanced arthritis and degenerative disc disease were very evident and the surgeon felt that my best chance was fusing the entire lumbar area.  But we also discovered that I had an old, undiagnosed and un-repaired compassion fracture in my thoracic region. This posed a difficulty because the areas above and below a fusion need to be strong to hold the fusion and mine were not. This led to a more aggressive plan.  The surgeon fused 8 levels…T10 all the way down to S1, in two different procedures on two different days (one through my stomach and one through my back).  
Side view of one part of Martha’s spinal fusion

This started out as a tough initial recovery and a very slow return to work, but steady progress was happening.  Eventually I was able to get back to work full-time, walk, cook, start traveling again  etc.  And then something started feeling weird. To spare you a longer story…my pelvis fractured in two places (once on each side) and two of the bottom screws loosened.  This was exceedingly painful.  They put me on bed-rest and then did surgical procedure number four to fix the fractures, replace the loose screws AND insert bolts into my pelvis to help hold up the weight of my now very heavy spine (the original weight of my body plus about three pounds of titanium). I felt a LOT better almost immediately, despite being battered by so much pain and so many surgeries in a short time span. And then…my pelvis fractured again, in a new location.

It took a while to diagnose and I was in excruciating pain, on bedrest at home and then in the hospital while insurance and my surgeon decided what to do.  Ultimately I had to have another surgery to fix that fracture, which complicated the whole existing recovery. I have seen a bone health specialist and added her to my team, and now do a daily injection of a drug that helps harden and grown bone more quickly. http://forteo.com

Which brings us to now. I was doing fantastically well, or at least I thought so, and was walking unassisted about 3 miles a day, working just about full time at my office (instead of mostly at home) etc. and then YET AGAIN something felt weird in a different spot in my pelvis. Which is where we are now, working through figuring out if I have yet another pelvic insufficency fracture (which is what it feels like to me but the CT scan shows nothing…which also happened the last time), or instability of my SI joint.  https://www.verywellhealth.com/pelvic-insufficiency-fracture-2549686?utm_source=emailshare&utm_medium=social&utm_campaign=shareurlbuttons

So, my life is great and I am grateful for a fantastic family, a wonderful job, the availability of superb health insurance, the care of great providers, good friends and the means to make our house work for my needs.  None of this is a pity party. It is to give you a glimpse into the life of someone with chronic pain and degenerative illness…nothing more and nothing less.  If you have questions, ask away. I’m a pretty open book.

 

 

We have been living through a kitchen remodel.  We are not complaining about the overall remodel…we feel super fortunate to be able to do it, despite the home equity loan, and will love having a kitchen that is perfect for us once we are done. But for people who are used to cooking from scratch at least twice a day, and frequently 3 times, plus baking treats and desserts, not having a kitchen has been trying.

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Morning of demolition

The primary reason why we undertook the remodel of the kitchen is that Martha has undergone a number of spine surgeries and is now living with a need for physical accommodation and accessibility in order to be able to work alone in the kitchen. She cannot bend, cannot reach up high and cannot lift more than a few pounds. This means she can no longer reach low cabinets, can only reach somewhat higher shelves with a reacher or a stool, cannot lift up things like a mixer or a pot full of water and in what we hope is the unlikely event of Martha being in a wheelchair for any length of time, the kitchen would not be easily navigable for her.   Anyway, the kitchen looked lovely, but was no longer safe or effective for solitary Martha utilization.

Before
Before!

As a general rule, we eat pretty healthy.  We eat tons of vegetables, cook things from scratch, do not eat processed foods usually and enjoy foods that are varied.  In addition, Kevin has to eat gluten free and primarily lactose free. Both of us feel a lot better when we are avoiding refined sugar, wheat, and most dairy and eating legumes only occasionally.  This way of eating is pretty close to a Paleo diet but closer to “Primal” (which is Paleo plus high quality dairy) and we are not zealots about it but have honestly found that we feel better.  So long story shorter, both of us enjoy cooking, both of us feel better when we eat lots of veggies and a variety of other fresh foods, and both of are better off avoiding certain foods.

So, we hoped to be able to stick to a pretty health diet without an actual kitchen. Our initial plan was to set up an outdoor kitchen on our deck and use the grill, a steel table, and our instant pot or slow cooker out there.  The first thing we learned is that the outlets on the deck were turned off when the electricity to the kitchen was turned off. So much for that plan.  What ended up happening is we used a mixture of rooms and spaces.  Microwave in the living room (yup. On the marble topped table from Kevin’s late mother), above the white carpet. Dishes in the laundry room sink, which was okay except the counter in the laundry room is virtually non-existent and there are not enough outlets in there to plug in the appliances we wanted to use, which were the electric kettle, the coffee maker and the blender. Refrigerator in the garage. The grill, which is propane, did work still on the deck but it turned out grilling every day was not as fun as we thought and was not as effective for breakfast.  The Instant Pot idea was still reasonable but to Martha’s distress, the best counter space and outlet turned out to be in the guest bathroom. With contractors in and out of the house every day, shutting down that bathroom was not an option and cooking IN the bathroom made Martha squeamish.

Bacon.
Bacon cooking in the great outdoors. You’re welcome neighbors.
camp kitchen
Camp stove on a piece of plywood on top of a saw horses.

So…how did healthy eating go? Not that well to be honest.  We did a steel cut oatmeal in the instant pot, an Instant Pot chili, and Instant Pot stew, quite a few grilled meats, many smoothies…and a bunch of “rip apart a rotisserie chicken and add some baby carrots” type of meals, and a bunch of take out.  Kevin created a “camp kitchen” in the garage and made a few yummy dinners and some breakfast eggs there but the “counter space” arrangement involved here was not ideal, it was not close to a sink, could not be really left unattended for long for safety reasons, and of course still no oven. We did some healthy takeout, but honestly it got old and expensive very quickly.  Even healthy takeout gets cold, and old quickly.  We had much more food that we would usually avoid as the kitchen renovation timeline went on. And we really missed our oven, and our counter space, and our sink with disposal.  These are “first world problems” to be sure and we totally understand that we are lucky to have these problems to complain about.  But boy, we are looking forward to “after!”

Guest bathroom Instant Pot
Guest bathroom Instant Pot…the only time Martha could stand doing this.
Kitchen demolished
Kitchen interrupted