MY STORY (Part 6) HAPPY ANNIVERSARY

(Fall 2004)

So today is the day. 5 years ago today I was in surgery. “I’ve made it” as some at work have said. But really, my journey at this new life has just begun.

And now, the rest of the story

By three months post surgery I was finished with my physical therapy. They told me I was as good as I was going to get. I was no longer walking with my cane and had gained about 70% of the muscle activity back into my left leg. It would always be the weak leg and it would always have loss of sensation. My right leg was doing much better; I had 90% muscle use back and I could feel the whole leg except for my toes and an occasional spot or two. I hated physical therapy with a passion, so I wasn’t too sad to see it end. However the “this is as good as you are going to get” comment scared me, because, well….crap….I walked like a slow moving duck and hurt like hell. So REALLY, “this is as good as you are going to get” really sucked.

However, I was alive and I kept reminding myself of that. I had at least gotten that wish.

Two MRI’s were taken that year. They showed my spinal cord had gone from a slim crescent moon shape to almost a half moon shape. There was fluid left at the surgical site and the surgeon suspected that is what was causing the electrical jolts, but I had permanent nerve damage and permanent spinal cord damage. He told me that my cord would most likely never return to a fully round shape but that we would watch it and see.

I spent that first year getting use to my new life. Along with learning how to walk, I had to learn how to deal with the pain. My regular doctor was very helpful in this, however, I didn’t want to become dependent upon strong medications so I tried to take as few as I could. In all honesty, I probably inhibited my recovery by not taking the medications prescribed to me, but I needed to work and I couldn’t work and take care of a four year old when I was zoned out on pain killers. So I dealt with the pain.

My daily routine was hard. When I woke every morning I would have to give my body time to get going. I woke most mornings to numb legs and if I slept with my arms out or above my head they too were numb when I woke. I went to work and tried to put in a full day but by three o-clock every day I was useless. The muscles in my back were tense and pulling by then and my back hurt like a bugger. I also had headaches and leg pains. After work I would pretty much lye on the couch in intense pain until it was my daughters’ bedtime; then I would take the strong pain meds and muscle relaxants. Mornings were the best time of the day but my evenings were awful.

My little four year old girl was a godsend that first year. She became my little helper. She learned to become so very independent and helpful and rarely complained. And her little prayers at dinner and bed gave me hope.

“and bless mommy’s back that it will feel better.”
“bless mommy’s back that it will feel better so she can play with me.”
There were lots of “bless mommy” prayers,

there still are

(fall 2004)

It was a tough year, and I still couldn’t walk well. I looked at my future that first year with a lot of anxiety. I was grateful for being alive, but I wondered how long before my body gave up and gave out. I missed a lot of work that first year. I never knew how my back and legs would feel when I woke up and there were many mornings I woke up to find myself in excruciating amounts of pain and with legs that wouldn’t hold me. I was determined that within 5 years I would have to leave my job and be on disability. It made me sad and fearful.

At the end of year one I had another MRI which showed my spinal cord was still misshapen. It also showed that my muscles had not attached in the manner they were supposed to. The surgeon told me they had attached themselves to the surgical patch instead of to each other and so every time I moved my back muscles I was irritating my spinal cord. This was what was causing the intense back pains and my muscle spasms. It couldn’t be fixed without further surgery and the risks for that were too high. I would have to live with it until I needed another surgery. He told me that my spinal cord was as good as it was going to get and that very rarely do they change shape after a year. He also told me that getting pregnant again with my spinal cord that way would not be a good idea.

I was crushed.

But I was also grateful. While I have always wanted more than one child, I was so very grateful I already had become a mom and it was a blessing she was here. While my pregnancy was a difficult one, I had gotten pregnant while the tumor was small. Had I gotten pregnant a few years later when the tumor was bigger it could have had a horrible outcome.

(Christmas 2004)

Between year one and year two things started to look better. I was missing less and less work. I learned how to run, even though it was really only just small sprints and I walked with much more confidence than before. I had learned to get used to the tingling sensations and was starting to be able to ignore the constant nerve and muscle pains. I tried many medications trying to find one that would help with the nerve issues but after a while I gave up and decided I needed to get used to it.

At the end of year 2 I had another MRI that shocked the surgeon and even shocked me. My spinal cord had changed from a half moon shape to a misshapen round form. It was still damaged but the shape meant that it would be stronger and that it was working better. It was great news.

Four months later I pushed myself even further by embarking on a new journey. I purchased a home, with a yard. It was a very happy time for me. I had come so far and been able to accomplish so very much.

I didn’t know if my body was strong enough to be able to do the mundane things that home ownership brings…like mowing the lawn and shoveling snow. But my daughter needed room to play and a place to put a swing. Plus she needed friends.

And remember, it is always for her! Plus I had made that deal with the Lord that I would be the best mom I could be. Part of that is providing a good environment and home for your child.

(Spring 2006)

So in December 2006 we sold our condo, packed our stuff and embarked on a new and scary life.

Life as a homeowner, not a condo owner.

When I decided to buy a home I had a list, most people do. However, my list was based not on what type of countertops I wanted or how big of a master tub I felt I needed. (I still dream about a large bubble tub….awww). Nope, my list was based on what I felt I could handle. This is what was on my list:

Little, or better yet, no stairs. (Stairs are still very hard for me.)
Small yard (I didn’t even know if my body could handle mowing)
If the home was two stories, the washer needed to be upstairs,
A garage, so I wouldn’t have to scrape my car.

There were a few other things on my list, but those were the most important. The home I bought was so far from my list that it is almost funny. Our new home was on just over a fourth of an acre, had four stories with the laundry at the bottom level and the bedrooms on the top. But it did have a garage.

What was I thinking?

(Dec 2006)

I don’t know what I was thinking. I fell in love with the home maybe that was it. But whatever it was, I bought a home that I didn’t think I could care for. And within the first month of moving in, I had fallen down the stairs 5 times.

Since that day, back in December 2006, my life has changed for the better. I found that I can mow the lawn, and while it hurt to do it at first, slowly my body got used to it and my muscles became stronger. I found that I can also shovel the driveway, although that task has not been easy and gets harder every year.

But working on my home, my yard, my gardens, has brought my life so much joy and through it all it has kept my body active and healthy. Plus I have gained some of my confidence back. Confidence that I “can do it” or at least I can try to do it. I needed that back, I needed to feel good about myself and my abilities again.

So today as I celebrate my five year anniversary, I feel almost whole.

Yes I struggle daily with things that others take for granted. My balance sucks, I still have very little sensation in my left leg and both legs still have constant tingling sensations. I also still have constant back pain and nerve pain. But I feel like I have my life back. I feel like myself again. It is a new me, but it is me.

While I’m not able to do many things I enjoyed before this journey began I have learned to accept what I can do and ask for help with what I can’t do. And those fun things I can no longer participate in, I try not to miss them. I have adjusted to my new body and my new life.

I have been able to enjoy my life the way it is. I can walk normal now, I can run again, I can exercise and participate in some activities.

But most of all I have succeeded at what I wanted most in life. I can be a mom. And a pretty darn good mom at that.

Plus there has been no new regrowth of the tumor and no new tumors found.

It has been a long five years. Filled with anger and tears but I have made it.

I no longer feel that my life is hopeless. Yes there may come a day when my situation will change for the worse and yes I still have bad days and even bad months and sometimes even multiple bad months in a row. But I look to the future mostly with hope.

And with gratitude.

I am so very grateful that I was born in a time when medical science could fix my problem. I am so grateful I was blessed with doctors who were given the gifts and talents that led them to medicine. And I’m grateful to my family and friends for being there for me through this journey.

Here’s to the next five years

Thank you for allowing me to share my story with you.

(Fall 2008)