I Get To

Today is Thanksgiving and I thought of something I wanted to say today about gratitude. This year, Thanksgiving is peppered with a little bit of angst and even resentment as many of us aren’t able to celebrate the way we normally would because of COVID. Even last night, I was lamenting the fact that I wouldn’t get to be with my mom on Thanksgiving (part of that had to do with the fact that I had to make the pies that she normally brings haha)! But this morning, I had a thought, and this is something that many of us have probably heard.

Instead of saying, “I have to,” say, ” I get to.”

Instead of, “I have to be away from family this Thanksgiving,” say, “I get to keep family safe and healthy,” or, “I get to have a small. cozy Thanksgiving this year.”

Instead of, “I have to make the pies that my mom normally makes,” say, “I get to try something new.”

Instead of, “I have to do all the cooking this year,” say, “I get to provide a good meal for my family,” or, “I get to eat while some people don’t.”

Instead of, “I have a big mess to clean up after this meal,” say, “I get to to clean up from a great celebration.”

Instead of, “I am having a lonely Thanksgiving,” say, “I get to have a peaceful, low key Thanksgiving.”

Gratitude is a matter of perspective, in my opinion. I have had to learn this the hard way as I have battled through some mighty tough obstacles in my life. “Having to” is an obligation, a chore, a duty. “Getting to” is an opportunity, a chance, a possibility.

This Thanksgiving, and as we continue to live through the era of coronavirus, please join me in “getting to” instead of “having to.”

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The Tunnel

I am standing in the middle of a long, dark tunnel. If I look behind me, I can see the pinpoint of light that is where I came from. If I look in front of me, there is a light that is my final destination, but that light always seems to be flickering and elusive. I want that light in front of me to be exactly the same as the light behind me, but I fear it won’t be. My biggest worry is that I have no idea what kind of light awaits me at the end of the tunnel.

The light behind me is my life before Key West in August 2019. I wouldn’t say it was blissfully happy, but overall, I was one happy camper. I was happy with my marriage, my child, my family, my job, my friends, and my health and body. Life was comfortable and I was highly satisfied. I could see my future out ahead of me very clearly, and I took comfort in that. I knew the steps I would have to take to reach that future.

Then Key West happened. Normally it’s one of the trips I most look forward to every year. I woke the morning of August 1 feeling just as excited as usual, but there was something bothering me: my back was sore. The pain in my back steadily grew more unbearable throughout the whole trip, to the point where it was debilitating. I suffered that whole trip.

Then as soon as I got home, my world turned upside down, and I wasn’t even aware it happened while it was happening. Complications from spinal surgery to fix 3 vertebrae that were lined up like stair steps left me numb and unable to move from the knees down, with some numbness up the outside of my legs and the back of my legs. Thus started my trip through this tunnel I am currently in.

I have been in this tunnel since August 8, 2019. I call it a tunnel because I feel closed in, trapped. My body traps my will. My body has altered everything — my marriage, my relationships, my job, my body, and my vision for the future. That’s the little, flickering light in front of me. I have no idea what my future looks like, and that uncertainty colors everything I see and everything I do.

And I hate it. I am the kind of person who follows directions, who sets goals, who takes deliberate steps to reach those goals. People keep likening my recovery journey to my marathon training. Except that they’re not alike at all. When I trained for the marathon, I followed a plan, and I knew that by following the plan, I would be able to finish the marathon. And I did. Yes, there were obstacles and uncertainties along the way, but it was implied that plan + effort = finish line. In my current situation, that equation doesn’t work. Instead, my equation looks like this: plan + effort = maybe walk again normally, maybe not — just wait and see, keep working though. I hate the uncertainty, and that hatred taints everything else in my life. My marriage seems compromised and less vibrant despite being more in love than ever with my husband. My relationships are changed, focusing so heavily on the limitations of my physical abilities. My job has changed in that I am now playing catch up after missing the first half of the school year and having to change the way I physically move about my environment. My health and relationship with my body is strained. I mostly hate my body and its limitations. Yes, I do have moments of celebration with my body when I can do something I couldn’t do (like use a regular cane instead of a walker, or walk unassisted, or bend down to pick something up off the floor), but those moments often turn quickly into thinking, “How sad is it to celebrate something so primary, something everyone else can do, something I used to be able to do without even thinking about it?” and then I am right back to that self-loathing.

I have such an impressive support system. I have family and friends and co-workers and doctors and therapists. Some of them are here for the long haul; some of them come and go. I am grateful for so many people who care about me and my progress, but I am resentful that my relationships now seem to revolve around my recovery. I don’t resent the people; I resent my situation permeating those relationships. That’s not anybody’s fault, well, except maybe mine for letting those relationships center around that. But my whole damn life revolves around that, and I never asked for it.

I have no idea what the rest of the tunnel path looks like. It’s dark, and the light at the end keeps flickering. The path ahead of me is often bumpy, sometimes smooth, and always unclear. I hate being in the dark, and I hate the lack of clarity. I wonder what my life will look like when I finally meet that elusive flickering light in front of me. Will it look like what is behind me, or will it look completely different? That unknown angers me, it saddens me, and it scares me.

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2019 Year in Review — Buckle Up

2019 has been an incredibly memorable year. The ups were way up there. The downs were way down there.

Peabody Ducks!

Memphis: In the early part of 2019, Jim and I took a long weekend trip to Memphis with our friends Larry and Cathy. This was my first time in Memphis and I absolutely fell in love! Highlights include seeing the Peabody Ducks, having some fantastic food at Gus’s Fried Chicken, listening to some really great music at Rum Boogie Cafe, and visiting historic places like Graceland, Sun Records, and the Civil Rights Museum. I loved that whole trip to Memphis and I can’t wait to go back!

Engaged!

Engaged: On a family trip in June, my family grew by one: it’s a boy! My daughter Becky got engaged to her wonderful fiance, Ben. I couldn’t have hand picked a better man to be mu daughter’s husband. All the quirky things about Becky, he embraces them. He knows how to take care of her and protect her and make her feel safe. I watch them together and they really seem like they are friends who love each other. It fills me with a deep happiness to know that Becky gets to spend the rest of her life with someone as truly wonderful as Ben.

Google Innovator: This year, after submitting my 3rd application to become a Google for Education Innovator, I was finally accepted! It has been a highlight of my professional life to get to do this! I truly enjoy working on a project related to education that I hope becomes something valuable to teachers. The experience of going through the Innovator Academy actually reminded a little bit of attending Kairos my senior year of high school in that you find yourself being exposed and made vulnerable in ways you never expected, but you come out the other side with so much energy and growth and a host of new friends who also went through the same experience that you feel bonded for life with them. (Shameless pitch — my project is called EduRate, and you can read more about it here.) Related to this…

The application video that finally got me accepted to become a Google Innovator!

London: When I was accepted into the Google Innovator program, the academy I needed to attend was in London, so I took my first trip there with Jim. I crammed as much tourism as I could into a few days because once the academy started, I would be busy with that for three days solid. We visited Kensington Palace, saw the changing of the guard at Buckingham Palace, visited Tower of London, rode the London Eye, traveled using the Tube, drank beer in pubs, enjoyed a traditional English breakfast, took a tour on the Thames, and were dazzled by Trafalgar Square and Piccadilly Circus. I also got to spend time at Google’s offices in Covent Garden and King’s Cross. Jim and I both fell in love with London so much that we are planning a return trip, hopefully in 2021.

Back surgery: In August, the year took a turn for the worst. I was in Key West when I started to experience debilitating lower back pain and numbness in my feet and weakness in my legs. As soon as I returned home, I went to the doctor and was diagnosed with spinal stenosis, spondylolisthesis (I had 3 vertebra slip out of place, looking like stair steps), and bilateral foot drop. This required a fusion of those 3 vertebra in my lumbar region as well as a laminectomy. The surgery did not go as planned (it is still unclear what exactly happened), but I had the surgery started in one hospital, then was transferred to another hospital where the surgery was finished, and I was left temporarily unable to feel or move anything really from below my knees to the tips of my toes, making me unable to stand or walk on my own. I was admitted to the hospital on August 6 and was finally released on September 4. I have since then started to regain some feeling and movement and mobility, which leads me to…

Rehab: I have been in some form of rehab since August 15. I spent 3 weeks in inpatient rehab, receiving 3 hours of PT/OT 6 days a week, and 90 minutes of PT/OT one day a week. I then transitioned to day rehab, which was 3 hours a day of PT/OT for 5 days a week, ultimately transitioning to 3 hours, 3 days a week. This just ended on December 27. I now transition to outpatient rehab, which will be about 1 hour a day, 2 days a week, for what I am guessing will be an indeterminate amount of time. I still have a long way to go to get back to full mobility.

Blood clots: Compounding the issues I am already facing, I also had to deal with having blood clots after surgery. After feeling pain in my right calf, ultrasounds were done on my legs to see if I had deep vein thrombosis (DVT). I did not. A week later, I was having pain in my left calf. Ultrasounds were done again and it was discovered that I had DVT in both legs. Because of that, I was also given a CT scan to check to blood clots that may have broken off and traveled to my lungs (even though I had no symptoms of this). Clots were indeed discovered, so I had pulmonary embolis (PE) in addition to DVT. As a precaution, I was placed on a different blood thinner (I had been receiving low doses of heparin) and had an IVC filter placed to catch any other clots that might decide to take a trip to the lungs.

In this image, you can see the hardware used for the fusion in my lower back. In the circle, you can see my IVC filter.

I am ready for 2019 to be in the rear view mirror. I have tried hard not to let the negatives of this year overshadow the positives, but the year has ended on a relatively sour note. So good riddance, 2019. Here’s hoping 2020 is a year full of celebration!

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My Journey Back: The Tracks of my Tears

This is the 6th post in a series about my recovery from complications from back surgery in August. And I apologize in advance. This post is likely to be a bit rambling. Honestly, I’m still not even sure I should publish it, but here it is.

Inspiring. Brave. Amazing. Bad ass. Hero. Positive. Upbeat. Strong.

These are all words — beautiful, flattering, humbling words — that people have used so many times to describe me as they’ve followed my journey through this struggle to get feeling back in my legs and feet and work on learning to walk again. It fills my heart when people say these things. It causes me to strive to be worthy of such kindness and praise. But if I am being brutally honest, I am not always those things. There are so many times when I am living in some pretty dark places in my mind. I just don’t show them very often.

Before this happened, I loved my body. It wasn’t skinny but it was strong. I could do so many things. This body trained for and ran both a half marathon and a full marathon. This body made it through power zone rides on the Peloton. This body survived speed punches and power punches in 90 degree heat during boxing class. This body did a 2 minute plank. This body hiked for hours on the Bright Angel trail in the Grand Canyon. This body may not have been much to look at, but it was strong and I loved my body so much because of what it did. And it did those things because I told it to do those things. I dictated my own limitations, which were none, as far as I was concerned.

Now, I don’t like this body. There are some days and some moments where I hate this body so much. There are days where I feel absolutely trapped in it. (Yes, I know that there are people in much worse condition than I am, but that doesn’t make my feelings any less real to me.) All of the things I listed above: can’t do them. I can’t even just go for a walk or go for a regular bike ride. I can’t just get down on the floor and do a sit up. I can’t lie on my side and do a leg lift. Yet everything I do is an effort. Sitting up in bed, rolling over in bed, sitting down on a toilet, getting up from a toilet, coming down the stairs, going up the stairs, walking with the walker, walking with the cane, standing, squatting, stepping to the side, stepping backwards, bending over, getting in a car, getting out of a car, putting on shoes and socks, taking off shoes and socks, putting on pants, shorts, or a skirt, taking off pants, shorts, or a skirt, a million little everyday things that millions of people do without thinking about them. Because everything is an effort, I am always huffing, puffing, tired, and sweaty. I never feel fresh and clean, even right after getting out of the shower because it is an effort to stand to shower and sit down to dry off. Because of this, I always feel yucky so I never feel like I look good. On days I have therapy, I don’t even do anything with my hair except dry it, and I don’t put on any makeup. I feel frumpy and dumpy and sweaty. Because I can’t exercise the way I used to (and also because my eating habits have gone down the toilet and I’m on a medication that can cause weight gain), I feel and look fat. So, in summary: weak, sweaty, frumpy, and fat. Which makes me hate this body. And because I hate this body, I can’t seem to see past the weak, sweaty, frumpy, and fat. Which makes me hate this body. You see the vicious circle. The negative self-talk in my head is relentless. I try to hear the words I mentioned at the start of this post — I’m inspiring, brave, bad ass, a hero, positive, upbeat, and strong. I try to remember where I came from — not feeling my legs or feet, not moving them, not able to wiggle a toe, stand, or walk. I try to realize I’ve come so far in a short amount of time. I try to remember that my doctor says I am progressing at a tremendous pace. And sometimes I can push out the negative self-talk with the reminders. But there are still a lot of times I can’t. And it breaks me.

I will never be able to thank so many people from literally around the world for the love and support they have given me and continue to give me. If I never had any of those people, I would have never been able to start this recovery, much less keep going with it. When I have a good day or hit a milestone or do something I couldn’t do a week ago, I can’t wait to share it with everyone. It buoys me up during the times my body stops me from doing what my mind is trying so hard to tell it to do. Just know that my smile, my happiness, my excitement, my joy are all real, but if you look closer, it’s easy to trace the tracks of my tears.

P.S. If you are tempted to suggest I seek some professional help to manage my feelings, rest assured I have also recognized this and have taken steps to keep my emotions manageable.

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My Journey Back — Travelling Gal

This is the 5th post in a series about my recovery from complications from spinal surgery.

I traveled to Houston for Thanksgiving to spend the holiday with my dad and his wife. This was my first trip of any kind since my surgery in August. We flew on Southwest via Midway and Hobby. My husband had pre-arranged with Southwest for me to have a wheelchair from check-in to the end of the jetway and from the end of the jetway through to baggage claim and where we would meet our ride for each way of the trip. My boarding pass had the code “WCHR’ so I knew that whenever anyone looked at my boarding pass, they knew we had a legit need for a wheelchair. At Midway, I had a short wait fro someone to arrive with a wheelchair. When I arrived at Hobby, I had a wheelchair waiting for me as soon as I got off the plane. However, I was told we would have to wait if we wanted the employee to take us beyond the gate, but he could not say how long he would be, so Jim opted to wheel me himself. We loaded my cane, walker, and purse into my lap and away we went. Jim parked me outside on a bench while he went to get our checked suitcase. The trip to Houston went pretty smoothly. Coming from Houston to Chicago was a bit less smooth, though. We waited probably half an hour for someone to come with a wheelchair after checking our bag, and when we landed in Chicago, I had to wait on the plane for about 15 minutes for a wheelchair, and then I was told we would have to wait again for someone to take us through to baggage claim. There were a bunch of us lined up waiting for transport. Jim just grabbed me and we left. I stopped in the bathroom and on the way out, we snagged an employee to take us through to where we would pick up our Uber to go home. I learned that if you need a wheelchair at the airport, you are 100% at the whim of all sorts of other people to get where you need to go.

I had no real issues going through security. I couldn’t walk through the metal detector with my cane so they gave me a TSA cane (clear plastic) to use, but I couldn’t use that either because it was just a regular, single cane. I did not think it would offer me the stability I need. So I got wheeled through and had my hands and chair swabbed and had a patdown in the wheelchair. It did not take long — but full disclosure: I have TSA Pre-Check.

I will admit some annoyance at having to use the bathroom, though. Let me first say that I completely understand that not all disabilities are visible. I should also share that the regular bathroom stalls at both Midway and Hobby are large enough to fit a person and carry-on luggage. The first time at Midway, I had to wait for the handicapped stall. A woman came out in pretty high heels, carrying a large purse and using a carry-on bag. The second time at Midway, I had to wait again. This time, the woman a large backpack on her back and a purse and a carry-on bag. The one time I used the bathroom at Hobby, I also had to wait for the handicapped stall. A flight attendant emerged with her small purse and carry-on bag. I can also tell you that each time I entered the bathrooms in these cases, there were many available regular stalls. So you draw the conclusions you want; I’ve already drawn mine.

For both flights, I was in the preboard group. You would think that is a sweet deal, especially on Southwest where they don’t have assigned seats. But if I am being honest, all I felt was conspicuous. I felt almost guilty. I wanted to tell people, “I normally board with the rest of you, and I sure wish I could now.” I just felt all these people’s eyes on me as a Southwest employee wheeled me over to the jetway. I just hate sticking out; I prefer to just blend in with the crowd, and I definitely did not at the airport.

One thing I have noticed with my condition is the feeling of almost needing to defend myself. Every time we pull into a handicapped parking space or I get some sort of special or preferential treatment, I feel like I need to somehow prove that yes, I am indeed in need of that parking space or assistance, that I’m not faking it or milking a situation or embellishing my current level of disability. The feeling I get is a little like guilt, a little like shame. I wonder if that’s some sort of prejudice I’m not conscious of in myself, being judgmental of people. Maybe I really am (see above paragraph about the bathrooms). I never thought I was like that, but maybe it’s something I need to work on.

Anyway, travelling in this condition isn’t easy. It required being comfortable with being dependent on others, and I am very independent, so I feel bad when I have to get help from others. Hopefully for my next flight, I’m more independent. Time will tell.

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My Journey Back: A Different Perspective

This is the 4th post in a series of posts about my recovery from complications from spinal surgery. And I have looked at the world from a very new perspective as someone who is dealing with a disability right now. I have discovered this:

The world is a very hostile place if you are not an able-bodied individual.

Things that no one gives second thoughts to suddenly become obstacles if you’re not able bodied. Cracks in sidewalks, doors, rugs on the floor, low toilets, small bathroom stalls, curbs — just to name a few.

It seems to me that there are so many places that really have no interest in accommodating people with disabilities; rather, they check a required box. They have the required number of parking spaces, but no real concern about the condition of the parking space or the condition of the parking lot. Potholes, uneven pavement, or cracked and ruddy pavement are just some of the issues I’ve encountered trying ti navigate my walker from a handicapped parking space to the entrance of a business. Entrances often have ramps; sometimes there are ramps from handicapped spaces to the sidewalk, sometimes not. The problem I see often with ramps is that they are steep. I’m not sure I’ve encountered a ramp I could actually push myself up while in my wheelchair, they are all so steep. Getting in through a doorway is also a challenge while in a wheelchair. Many entryway thresholds have some sort of lip that is difficult to roll over on your own, and when someone else is pushing, I have been nearly pitched out of my chair when someone tries to go at ramming speed to get over the hump.

Trying to go shopping is frustrating. Many retail stores try to cram so much merchandise onto their floor that it can be an exercise in futility to try to navigate the store. One store I visited was incredibly crammed to the point that my wheelchair could not fit between displays. Others are not any better even if I am using my walker.

I have been some places that have been very hard to walk because of their flooring choices. Textured flooring, uneven flooring, incredibly slippery flooring — all dangerous or requiring great exertion to walk across.

Public bathrooms can be among the most ridiculous. I have been in bathroom stalls that are supposed to be accommodating for people with disabilities but were so small that once you got yourself wheeled in the stall in your wheelchair, you had no way to turn around, no way to lock the door behind you (unless you backed into the stall), and no way to get out of the wheelchair and get to the toilet. I have been in bathrooms where there is only one grab bar behind the toilet or where the grab bars are loose. Even something as simple as placement of paper towels and sinks is problematic. Many public bathrooms have sinks and paper towels or hand dryers so far apart from each other that I have to walk several steps — with my wet hands on the walker handles (or using my wet hands to wheel myself to dry my hands).

Of course, businesses are allowed to design their businesses as they see fit — they can choose their own flooring, design their own displays, or maintain their grounds and parking areas as they see fit. But they should realize that they may be losing some business from people who simply can’t find a way to navigate their way to or through that business.

None of these things ever once crossed my mind while my body was working in a typical fashion. But now that I am forced to experience the world from a completely different perspective, I have discovered that most of the world doesn’t really seem very concerned about making that world easy for those with disabilities to exist in.

Quick side note: something else I have discovered, though, is that people can be very kind. I have had people of all ages voluntarily offer to hold doors for me or clear a path for me or find me someplace to sit that is easy to get to. I am deeply appreciative of each of those kindnesses when they are shown to me. I just wish that I didn’t need to rely on those kindnesses to open a door.

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Wildfire

Yesterday morning I was watching the morning news. There was a report about the California wildfires, which are just horrifying. It seems that California has a lot of these fires, but it never is any less tragic every time they happen. It’s terrifying and sad to see these fires come into populated areas and know that people’s lives and homes could be lost. But something struck me as I watched this particular news report.

The video showed a blazing fire closing in on a ranch. Silhouetted against the backdrop of the fire were horses running out of their fenced enclosure. It seems to me that it is likely that these horses will die in the fire. I don’t see how they can outrun it. I don’t see how they can protect themselves. I am willing to bet that the people who lived on and worked on that ranch evacuated. This infuriates me. I can’t wrap my brain around how people can flee a disaster to save their lives yet leave animals behind to perish in some pretty horrific ways. We sadly see this in too many natural disasters — wildfires, floods, hurricanes. But in the case of this ranch, I am sure some will say that it would be a massive effort to try to evacuate so many large animals. And they would be right — it would be incredibly challenging. Buy I guess my counter would be that maybe you should not maintain all those animals if you cannot properly care for them, which includes finding them adequate shelter in the face of disaster. If they cannot commit to this, then maybe they should not be allowed to have those animals.

Maybe this is a business opportunity for some people who are animal activists who know netter than I what to do. Maybe there should be a rescue or shelter service that people who own animals — especially a large number of animals or large animals like livestock — can partner with to help get animals to a safe place. If organizations like this already exist, then maybe they should be more visible or there should be more because it is just awful that animals can so easily be left behind to perish.

Maybe I am a complete moron about this. I know people who live in California, so maybe if I am completely off base on this, they will set me straight. All I know is that as I watched that news report, I felt just horrible for all the people who were having to face these fires, but I also felt pretty lousy about the animals I saw, too.

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My Journey Back: Work It

This post, the third in a series about my recovery from a tough back surgery, will chronicle the work I have done so far. Currently, I can walk pretty steadily and for a fair distance using a walker. I can stand unsupported for a few minutes, maybe less if I am doing things that require me to move my arms or head or bend my legs. I can walk up and down stairs one at a time forward if I have 2 railings or sideways/laterally if I have only 1 railing. Currently, I am able to walk very shakily using only one hand for support. Considering that 2 months ago, I could barely stand when using a walker and couldn’t really walk at all, I am doing remarkably well — at least that is what my occupational and physical therapists tell me. And they have also told me that they won’t blow sunshine up my rear by telling me I’m doing a great job if I’m not because dishonesty about my progress won’t be helpful. So I guess I’m doing well in my progress, but I have a lot of things I do to make that progress.

The number one thing I do is walk and stand. Evert day at therapy, I walk. Sometimes I walk with my walker and a therapist walking alongside me. Sometimes I walk using my walker while in the gait track, which is basically a harness suspended from the ceiling that prevents me from falling. Sometimes I walk on the treadmill. I believe my record on the treadmill is about 24 minutes, which earned me a quarter mile distance since I was walking at my top speed of like .5 or .6 MPH. I also spend a lot of time standing. I started by standing and holding on to a table with both hands then progressed to one hand and now I use no hands as much as I can. When I am standing, I usually don’t just stand there. I am given activities that are either meant to distract me or to add another level of activity. I have stood and done word searches, puzzles, matched cards, and played games. I sometimes do arm exercises with light hand weights while standing. Sometimes I have to pick things up from the table and then squat down to put them in a box. Sometimes I have to stand and pass things from one hand to another around my back or over my head. All of the activities are designed to improve my endurance while standing as well as my balance.

One of the first times I took a step using the walker. It took 2 people to help me move my legs and I had to rest after only a couple steps.

Sometimes in the gait track, I have obstacles to deal with — canes on the floor to step over, cones to tap with my feet, foam mats to walk on to adjust to walking on unstable surfaces. I have gone outside to practice going up and down curbs. I have done practice wheeling myself around in my wheelchair to make sure I have the endurance to do that at work.

My family with me while using the Nu-Step.

Occupational therapy has helped me with things to be at work and home. I practiced transferring from my wheelchair to a rolling desk chair so I don;t have to sit in my wheelchair all day at work. I have practiced working in the kitchen — I made a sandwich, some eggs, made coffee, washed and dried and put away dishes, and taken things out of and put back in cabinets. I have practiced how to transfer from my wheelchair to a regular height toilet using my walker and grab bars. I have even learned how to get in and out of cars.

Work in the parallel bars.

There are times I do work in parallel bars. This is where I have been practicing walking using only one hand for support (this will allow me to eventually transfer from using a walker to a cane). I walk over obstacles, do toe taps, do marches, side stepping, and step up onto blocks.

To help strengthen my legs. sometimes I get to work on the Nu-Step (which is like a recumbent bike but instead of pedaling, I just push and pull with my legs. I have worked on a recumbent bike as well. I have tried getting down on the floor and back up again a few times, but the braces I wear on my legs really hinder that right now. I need some more leg strength and ankle strength to get that move perfected!

The gait track harness.

When I was in inpatient rehab, I had 3 hours of therapy Monday through Friday and 90 minutes of therapy on Saturday and Sunday. Once I graduated to day rehab, I started with 3 hours of therapy Monday through Friday. Now I am down to 3 hours of therapy three days a week. I believe I will eventually drop down to 2 days a week with the goal of eventually moving from day rehab to outpatient rehab, which is usually 1 – 3 days a week for 45 minutes to an hour each.

And then someday, I won’t need therapy anymore. That’s the day I look forward to the most!

Obstacles for me to navigate while in the gait track.
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My Journey Back: Temporarily Sidetracked

This is blog post #2 in a series of posts about the journey I am on to recover from complications of back surgery.

While I was in inpatient rehab in Silver Cross hospital, I sometimes would have calf pain. I attributed it to the fact that I didn’t walk very much and my calf muscles were tight from lack of use, so when I would walk or stand, the muscles would cramp. I also knew very well that calf pain could be a sign of blood clots — deep vein thrombosis. But since I was on a blood thinner (heparin), I didn’t think blood clots could be the culprit.

I told my rehab doctor about the pain — it was specifically in my right calf. She checked my legs — no redness or swelling, just tenderness to the touch. She ordered ultrasounds of each calf just to be safe. Ultrasounds revealed no blood clots — whew!

But the following week, I had pain in my left calf. I mentioned it to my surgeon when he came in to do a follow up. He did the same exam my rehab doctor had done a week before — no redness, no swelling, just tenderness to the touch. He also ordered ultrasounds of both calves to check for blood clots. I was a bit irritated — after all, I had this done just a week ago! I had the all clear. Why did I need to do this again?

Guess what? I had DVT — in both calves!!!!!! I was shocked! How did that happen so fast in just a week? And while on blood thinners? The doctor decided to order a CT scan of my chest to be sure none of the clots had caused a pulmonary embolism. Not long after the CT scan while I was back in my room, sitting in my recliner relaxing, my nurse came in and said I needed to get into bed. I knew that meant nothing good. Sure enough, I had multiple PEs despite not having any symptoms — my blood pressure was normal, I had no chest pain, and I was breathing normally.

I was freaked out big time about the clots. After all, everyone knows the damage blood clots can do. Plus, I was terrified of being on bed rest — how much progress would I lose by missing physical therapy? I cried — tears of fear and tears of frustration. My surgeon and now my hematologist decided I needed an inferior vena cava (IVC) filter placed to catch the DVT should they decide to move. That was placed while under twilight anesthesia (I remember none of the procedure). A small incision was placed in a vein on my right collarbone and the filter threaded through there until it was placed properly. Once it was placed, my bed rest restrictions were lifted. I was also switched to a different blood thinner. I started getting Lovenox injections. Those were worse that the heparin shots, let me tell you! Both blood thinner injections are given normally in the belly, and they can leave significant bruising. The Lovenox injections also had the added “fun” of burning like hell upon injection. I started having to have an ice pack on my belly 15 minutes before an injection to help minimize the burning. Luckily, once I was discharged home, I was switched to an oral blood thinner (Eliquis).

Inside the yellow circle is the IVC filter that was placed. You can also see a side view of the hardware placed in my back.

Maybe you have the same question I had — how did I develop blood clots while on blood thinners, especially since I have no history of blood clots? Here is what my hematologist explained: normally, after back surgery, there is a higher risk of bleeding so it is uncommon for a patient to be given blood thinners. However, since I was so immobile, they knew I would be at risk for clots so they started me on heparin, but only about half the usual dose given to typical post-surgical patients. The immobility combined with the lower dose of heparin allowed the clots to develop.

Before I started the heparin injections in my stomach, I had them in the back of my arm. This is a sampling of what the bruising from blood thinner injections looks like.

I am very glad that my couple of days of bed rest and missed therapy sessions resulted in virtually no loss of progress in my recovery. I work very hard every day to keep myself healthy and safe so that I don’t ever have to worry about any loss of progress!

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My Journey Back: What Happened???

Today, I begin a series of blog posts (that I’m sure some of you just KNEW were coming!) about this journey I have been on for the past few weeks. It’s not a journey I wanted or chose for myself. It is not a fun journey. But it is one I must face.

Like many middle aged, overweight women with a decent sized bust, I’ve had back pain on an off. I have attributed that back pain to the aforementioned conditions as well as things like sleeping in a funny position or over-exerting myself when I exercise. I had a lot of back pain when I was in London in July which I attributed to hours on my feet while touring and sleeping in a pretty uncomfortable bed for a week.

A few weeks after getting home from London, I left for Key West. August 1st, to be exact. My back was a little sore that morning. By the time I got off the plane in Atlanta, I was in a lot of pain, walking quite slowly. The next day, I was still in bad pain, walking very slowly, pretty much hunched over. I thought maybe a massage might help, so I had one. No luck. The next day, a Saturday, I started to notice that my legs felt weak and heavy and feet felt a little numb. I still had pain when walking, but now I had a hard time picking my feet up off the ground. I had to pull myself up stairs with my arms, using the railing, and I could barely lift my legs to get into an Uber. I started really needing assistance for walking. The next day, a Sunday, I started to worry about my journey home on Monday. I went to a quick care in Key West just to get something to mitigate the pain enough to let me walk a little easier. I was given prescription strength ibuprofen, a muscle relaxer, and percoset. To give you an idea of how much pain I was in, I took all those drugs and they had no effect at all. Jim arranged for wheelchairs for me at Atlanta and Midway because there was no way I would be able to walk anywhere in those airports. We got home late Monday night. I literally crawled up the stairs to bed on my hands and knees.

The next day, August 6, I saw a doctor about my back. He showed no chill at all when he discovered I had bilateral foot drop. It was scary how aghast he was. He showed me an X-ray of my back, showing how L2-4 were way out of line, looking more like stair steps, and how those vertebra were pushing things all out of whack in my back, causing the pain and the foot drop. Diagnosed with severe spinal stenosis, I now faced surgery to fuse L2-4 and have a laminectomy of those vertebra as well. I was admitted to the hospital that afternoon. After an MRI, CT scan, and an EMG, it was confirmed that the culprit was indeed the spinal stenosis causing the issue and surgery was a go on August 8.

Here’s where things get a bit foggy because I don’t remember much of what I am about to share. I was taken back for surgery that afternoon. But during surgery, something happened where signal was lost to some important nerve (SSEP?), so the surgery was stopped. The fusion was complete. The laminectomy was started but not finished. The doctor wanted to check the nerve issue, but I guess that in order to do that, I could not have any anesthesia in my body, so I was given narcan to reverse the effects and given an MRI and CT scan. Whatever the doctor saw prompted him to contact doctors at Rush to take over the rest of the surgery. I was transported by ambulance to Rush where the doctors there ran more tests, determined that whatever the issue was before was no longer an issue, and proceeded to open me back up to finish the laminectomy. I remember the following things: going to surgery, being in a white, fluffy thing (which is apparently the inflatable thingy they used to move me), a siren (assuming from my ambulance ride), and throwing up twice and apologizing to two pretty nurses foe throwing up (they turned out to be my overnight ICU nurses). I woke up, surprised to find myself in a hospital with a fabulous view of the Chicago skyline. My back pain was gone, but I could not feel my feet or move them. Doctors would come in and tell me to wiggle my toes and I knew damn well they didn’t wiggle and the doctors would say, Good job.” I hated that. I was told that there was nothing they could see that was causing the issue with my feet, but that there was also nothing preventing a recovery of movement or feeling in my feet, but that could take at least a year or even more to return. The nerves just were too damaged and time and therapy would be necessary.

I spent August 6 – 9 at Silver Cross hospital, August 9 – 14 at Rush hospital, and August 14 – September 4 back at Silver Cross in inpatient rehab. I was released home on September 4 and am getting ready to start my last official full week of day rehab (3 hours of therapy, 5 days a week). I’m not sure what happens after this week, but my status as of today is that I have movement in my feet and toes, but the numbness remains. I can walk haltingly with a walker. I can stand for very short times (measured in seconds) unassisted. My legs are weak so I put a lot of weight on my hands and arms to support myself when I walk. I stretch, I do strengthening exercises, I do upper body work, I stand, and I walk — all in an effort to be able to learn to stand and walk again on my own like I could in July.

I have been supported by a massive group of friends, family, and coworkers in ways I could never have imagined possible as I go through all of this. That support system has been invaluable to my recovery work.

I did not ask for this to happen to me. But it did and I have no choice but to work the hardest I have ever worked in my life to get myself back to normal. It is the longest journey I have ever faced, and the most uncertain journey as well.

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