Trying to win the war on pain

Over the past 15 years I have struggled with pain and it can be very frustrating. When I wake up, the first 15 minutes of my day are the worst. I even bought a new mattress this year to try to help my body so I would not wake up in so much pain. The mattress helps, but it’s not until I get up move around, and do my morning stretches. Only after I take my muscled relaxers and pain medication will I start to feel better. It is just temporary though because I still have to take medication and stretch throughout the day to help with my pain level.

After I left the rehabilitation hospital I was on all sorts of medications, but after a couple of years I took myself off of them. For about 7 years I didn’t take any medications and it was great. Then everything changed and about 8 years ago I started hearing a strange popping sound in my left hip. I thought it was nothing just my body popping like when I crack my knuckles. Well I was wrong. After I had some x-rays taken I found out that my left hip was actually popping in and out of the socket. I have a complete spinal cord injury at the mid-chest level, so I can’t feel the hip, but my body reacts to this pain in other ways. I thought I would be a candidate for surgery, but after going in circles with many doctors around the country, there was no easy solution except to go on muscle relaxers and pain medication.

I have lived with this hip issue for about 8 years now and it continues to get worse. The hip is so bad that I have bone spurs on the top of my femur bone and the hip socket is barely a socket at all. It is just bone rubbing against bone, and the hip after many years is completely dislocated. It has affected how I sit in my wheelchair and my everyday life. If I am in my wheelchair too long I have to get out of it and stretch out a lot. Just recently my right hip has started making the same popping noise that my left hip did when it first started sliding in and out of the socket. It is hard to explain to people sometimes how I can’t feel the actual hip, but it still makes me have pain. My body will send me signals when I am in pain, such as shooting pains up my back, severe muscle tightness in my back, sweating and sometimes major headaches.

Since I have to take pain medication everyday, I have to deal with the side effects, like drowsiness. I work full-time so I load up on caffeine. People tease me because I drink Red Bull, not because I like it, but it does keeps me alert. Even though I am from Seattle, the Starbuck’s capitol, I am not a coffee drinker so Red Bull gives me my wings. My pain doesn’t stop there; I also have pain in my back from the metal rods and screws that are holding my spine together. That pain always radiates to my neck and I use a natural pain relieving cream to help as an alternative. I found a pain relieving cream that has a nice smell and is better then Icy Hot, so now I don’t have to bother my co-workers with that strange smell Icy Hot gives off. The pain relieving cream is really great, and I have been able to use it on my sore muscle spots in my back and neck. This has helped me to reduce my pain medication. I don’t think people understand that being in pain all the time is actually very tiring. Just dealing with the pain is a pain, there’s no other way to describe it. I have accepted that I will probably have pain the rest of my life, but I will also not let it slow me down. I will continue to look into alternatives because I would love to get off all the medications. I hate taking pills. I also have looked into getting surgery to get a pump implanted that will disperse medication directly into the spinal cord. Life goes on and I will continue to do my stretches, take my meds, make sure that I sit in my wheelchair correctly and go get the occasional massage.

Tammy Wilber
~Waiting for a pain free day~

What do I miss about life before my injury?

In the last couple of months people have asked me what I miss about my life before my injury. The answer is everything! How could I not miss things, it changed everything about how I thought my future would turn out. I miss not being able to just get up and go. I can still get up and go, but it is more like get up and in a little while I will go. If you add all the transfers I have to do in and out of my wheelchair and extra personal care, it adds time to my day. I am not trying to be negative just honest because it is the truth. I wasn’t born with a disability, I sustained one when I was 17 years old. I miss things that we all take for granted when we are used to having it. When you all of a sudden wake up one day and realize you can’t walk it is life changing. I missed out on my senior year of high school. I missed out on being co-captain of my soccer team. I missed out on my dream of becoming a nurse, but who knows even if that would have happened. I was young and could not predict how my future was going to turn out, and no one else can either.

My disability impacted so many aspects of my life, and something that I miss the most is being able to talk to someone eye to eye. It is hard to carry on a conversation with someone when they are a lot taller. I miss my family because I chose to move away from where I grew up to get away from the snowy winters. I miss the friends I grew up with and seeing them now having kids. I miss the fact that it is not as easy for me to just have a baby. I know I can have a baby and have thought about it a lot, but my body has already been through so much. That is why I would love to adopt a child someday. I miss being able to get to know someone easily without having the conversation always turn to my disability. I miss just being in the crowd and not always being looked at because of my wheelchair. I miss not being able to feel my legs. So here are some answers to the question people have asked me about what I miss about my life before I was injured. Now let me tell you what I have gained because of my injury.

Being injured at 17 years old, I was already in a transition period in life and not settled into college, marriage, children or a career. I could plan the rest of my life around my disability. When someone sustains an injury later in life the results have not always been good. Unfortunately, I have seen these injuries cause divorce, or a disruption in their careers. I have also seen many good things come out of it as well because when something traumatic happens it can bring family and friends closer together. After my car accident I really found out who my true friends were. My life is still not as I imagined it would be, but at 32 years old I think that is normal. Disability or not, I think I can still relate to many women that don’t have a disability. There is such thing as a biological time clock and I have felt mine ticking. If marriage and kids are in my future that is great, but I will not plan my life around it and I will not settle. If it doesn’t happen, it doesn’t happen. What I will do instead is live my life now and not stress about the future. That is one thing I am not sure I would have ever learned before I was injured. I can really appreciate the saying in life, “Don’t forget to stop and smell the roses!” The life lessons that my injury has taught me is to live for today, enjoy what you have because you never know what might happen tomorrow.

Tammy Wilber
~Remembering to stop and smell the roses~

My Hero, My Inspiration, My Friend…

In life, we all have people that inspire us, and sometimes they don’t always realize how much. I hear from a lot of people that say I inspire them, and while that is a compliment, I feel it has a lot to do with my disability. Strangers have approached me and said I inspire them because I can drive a car, and go grocery shopping by myself. I do understand why people say this, and I don’t think it always has to do with the fact that I have a disability; it is just life. I think we all have people in our lives that inspire us to want to be better. When I really reflect on my life and think about everyone that is dear to me, the one person in my mind that always rises above the rest is my hero, my inspiration, and one of my best friends, Danijela.

In the fall of 1993, I was finally being discharged from the rehabilitation hospital after a long 3 month stay. I had gone through intensive physical and occupational therapy after I had a car accident, which left me with a spinal cord injury. I found out that a couple of weeks after I was discharged they were admitting another young girl with a spinal cord injury, and her name was Danijela.

Accompanied by her mother, Danijela was 13 years old when she came to the United States, and she was being sponsored by a non-profit group called Veterans for Peace. In the early 1990’s, Danijela was a victim of the war in Kosovo, and came to the US to get treatment after she had been shot. I was excited at meeting someone from another country with a spinal cord injury, especially because she was a girl close to my age. After she began learning English from watching television, we started sharing our stories with each other, and we have been best friends ever since.

After a few months at the rehabilitation hospital, the Veterans for Peace organization found a host family for her to stay with because she did not want to go back to a country that had a war going on. She transitioned into a high school, and I was so happy she would be living about a half hour from where I lived. Danijela said if she went back to Kosovo, it would have been very hard to live there with a disability because things are not very wheelchair accessible. After 5 months, Danijela’s mother had to go back to Kosovo and then Danijela was all on her own. She was by herself in the US, living with a wonderful host family, attending high school, and she had a permanent spinal cord injury, all at the age of 14 years old. Over the years she became part of my family as well; we helped her out on many occasions, and even took her to Disneyworld on vacation.

Fast forward to 2008, and at the age of 29, she now has a 4 year old beautiful little boy named Srdjan. A few years ago I got upset at Danijela because every year she was so great about always calling me on my birthday. Well, it got late in the day, so I called her because I thought she had forgotten. Instead, she informed me she was in labor and had given birth to a beautiful baby boy. Danijela is someone that has truly overcome many obstacles, which I admire her for. She works a full time job, is a single mom, and hasn’t been back to Kosovo in 15 years. I couldn’t image not having my mom, my dad and family in my life, and yet live half way around the world from them. Luckily after many years, her mother and father finally got to meet their new grandson, and visit with Danijela. They were only able to stay for one month here in the US, so they did as much as they could in a short time, to make up for the last 14 years that they all had missed. Unfortunately, I was not able to get back east to visit with her family, but I know it was a dream come true for all of them.

Danijela has shown me what it means to be a true survivor. When I have bad days or just need to talk, I call Danijela and she is always so upbeat and positive. When I think of her, I really have nothing to complain about because I have my family here, and Danijela's family is so far away. Danijela and I may live 3000 miles apart, but no matter where we are, we will always be in each others lives. When I went back east to visit my family a couple of months ago, I got to see Danijela, and it was like no time has passed. Since her son Srdjan is only 4 years old, she was trying to explain to him who I was, and I was blown away by what she said when she introduced me. Her comment was, “Srdjan, this is Tammy, the person who taught your mommy everything she knows how to do in a wheelchair.” After so many years of going through life’s challenges with a disability, I guess Danijela and I never really said how much we learned from each other.

It just goes to show you that sometimes you have no idea how much impact you can have on people. I am not perfect and I have bad days, but from the outside looking in, I can see how people can be inspired by the fact that I have a disability, and I am still able to work full time, volunteer, travel, drive a car, and do most anything anyone can do. What is really important is that once in a while; take a moment to tell people that they inspire you to want to be a better person. That is why I wanted to write and share this with Danijela, who is my hero, my inspiration, and my friend.

Tammy Wilber
~Inspiring others, and to being inspired~

On another note; I do have to point out that besides Danijela having such a positive impact in my life, if it wasn’t for the support of my mother throughout all these years after my accident, I don’t know how I would have gotten through many challenges. So, to my mom, she is my backbone, my strength, and also my best friend. If I wrote about her, it would be a novel, and I don’t know how to write a book, so now I am sticking with blogs.