What am I thankful for this Thanksgiving?

This past week I was reminded that I have a lot to be thankful for, and especially since it is almost Thanksgiving. Out of nowhere I received a letter in the mail announcing that a health professional that I knew for a long time passed away. She was a person who happened to be my nurse for the last 8 years. I am thankful that I had her as my nurse because she always went above and beyond the role of just a nurse, she was a friend! I didn’t find out exactly what happened to her until a couple of days later, and was shocked to hear she had battled cancer for a long time. I didn’t even know she was sick. The last time I saw her was in July when I was having severe and mysterious stomach pains and had already made to 2 trips to the ER with out anyone knowing what was happening to me. She specialized in working with people who have spinal cord injuries, so when I didn’t have a clue what was causing my stomach pains I went to see her because I knew I would be in good hands.

Over the years I have had some great health professionals, but it wasn’t until I moved to Washington State that I found a team who always made me feel like their number one patient. I was amazed at my first appointment how thorough my new doctor and nurse were. I was not just rushed in and out so the doctor and nurse could get to the next patient; I was shown compassion, respect, and received unbelievable care. I thought that at my next appointment they probably wouldn’t even remember me. Well I was wrong! No matter how little my medical issues were or how big, they always worked as a team to try and figure out what was the next move. They made sure that if I didn’t feel comfortable with the outcome of my appointment, I would get a personal follow up email or phone call from one of them. I had never heard of such a thing. My nurse made sure I was taken care of. If my refills on my medications ran out, and I forgot to call ahead, I could always count on my nurse to call in my prescription, no matter how busy she was. Also, if they had a full day of patients, but I called about something serious, they would figure out a way to fit me into the schedule. A couple of times they saw me during their lunch hour. Now that is dedication!

On this Thanksgiving I am reflecting upon how lucky I am to have such great medical professional’s in my life. I have an amazing doctor and am so thankful for the wonderful care I got from the nurse that worked with him for so many years. I will continue to receive medical care from my doctor, but I know the next time I go to an appointment it will probably be really hard. When I get there my nurse of the last 8 years will no longer be there to greet me and ask me how I am doing, it will be her replacement. She loved her job and I know it wasn’t just me that she made feel like her number one patient, she did this with a lot of other people. I also heard from a friend of mine that she kept her illness very quiet and worked right up until a couple of weeks before she passed away. That is how much she loved what she did. She lived for her patients and making sure they got the best care possible. I will never forget her, and will always be thankful she was my nurse!


Tammy Wilber
~Thankful for nurses everywhere!~

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~

Veteran's Day - A day to remember and honor our heroes!

Veteran's Day was not a day that meant much to me personally until I started meeting veterans coming back from Iraq. I was surprised to find out that the amount deaths because of the war in Iraq was 4193 troops. On this day I want to remember all of those men and women that have put their lives on the line to serve our country.

Since I use a wheelchair, I often meet veterans who have served in the military, and ended up with devastating injuries. Their lives will forever be changed, in a way I will never be able to relate to. Recently, I met a young guy who served 2 tours of duty in Iraq, and because of an explosion, he lost both legs, and his left arm. He can walk with prosthetic legs, but uses a power wheelchair to get around for most of his mobility. I have seen him in some magazines and read a couple of articles about him, but to meet him in person was a totally different experience. I only spent a few minutes talking with him but, all I could think about in the back of my mind was how young he was! Even though I am sure he has been through a lot in the past few years, he seems to have a great attitude. He has been traveling around and sharing his story with people all over the country, and visiting with veterans injured in the war. In a couple of weeks I will get a chance to hear his story in person and am really looking forward to it.

A couple of months ago, I was invited to an event hosted by the Northwest Paralyzed Veterans Association here in Seattle, WA. There I was the only girl in a wheelchair, not a veteran, and surrounded by 20 plus veterans that had flown in from all over the country. They were here in Seattle to participate in an annual Trapshoot event hosted by the Northwest PVA. It gave me a good chance to spend sometime with some local veterans and others from around the country. I was really impressed with the support and respect they all have for each other. I can tell that there is a very special and unique camaraderie among veterans, which is very understandable, since they can relate to each other. I am glad to have spent time getting to know them and I look forward to attending more of their events in the future.

So on this Veteran's Day, I will honor and respect so many brave men and women who have put their lives on the line, and remember those who are no longer with us.

To learn more about the Paralyzed Veterans of America organization visit their website: http://www.pva.org/


Tammy Wilber
~Remembering America’s Heroes~

Traveling Tips Part 1: Renting a car if you have a Disability

In the past 15 years since I have been using a wheelchair, traveling has never been easy, but I don’t let it stop me. Just a few weeks ago I had to go to Atlanta, GA, and I decided to rent a car. I have only rented a car one time before, and I couldn’t remember what rental company I used. I got online and started searching different rental car company websites to see which could provide me with the assistive devices I needed, like hand controls. At first my initial search was frustrating because you have to navigate your way through each of the websites to see if they even offered options for rental cars like hand controls for people with disabilities.

When I first went on the Avis website, it didn’t jump right out at me that they provided services for people with disabilities. What I had to do was type in “disabilities” under their search engine. They had an entire page titled “Special Equipment”, and which showed that they provided different options like hand controls, transfer boards, swivel seats, panoramic mirrors, and spinner knobs. To make the reservation, first I had to just make a regular reservation online, and then call the “Special Equipment” reservations phone number to tell them specifically what I needed. You have to make your request at least one day in advance so they can accommodate the request for special equipment.

I arrived really early in the morning at the airport because I had taken a red-eye flight, so when I went to the Avis counter to pick up the car to the lady behind the counter asked if I could wait about a half hour. What I realized is that everyone else had the option to take a shuttle over to the place you pick up the Avis rental cars, but that was not an option for me. The shuttle that takes people over was not wheelchair accessible, and did not have a lift. It was about 7:30 in the morning when I got there, and the lady was all by herself. She said once her replacement got there around 8:00, then she would walk over with me to where the car would be dropped off. While at first I was irritated that I couldn’t just hop on the Avis shuttle and go get the car by myself, it was actually easier that they just drove the car over. It saved me less transfers and less time of me carrying around my luggage, but it would be nice for the company to have at least one accessible shuttle. When I got the car I specifically had asked for a two door vehicle because it is easier to get my wheelchair in and out of the car, but instead they upgraded me to a larger 4-door car at no extra cost. They probably thought they were doing me a favor by upgrading me, but they didn’t ask me about it, and I would have preferred a two door car.

When my trip was over, I went to the rental car return area of the airport; I pulled up and waved my handicap placard out the window. Someone came over to me; I explained to them that I needed to be driven to the airport since their shuttles didn’t accommodate my wheelchair. They said no problem, and someone drove me to my gate. It saved me time and energy from having to get out of the car, take a shuttle, and carry my entire luggage with me. I also appreciated their customer service because they were very professional and asked me numerous times what else they could do to make my travels easier. When the lady drove me back over to the gate, I asked her if a lot of people with disabilities rented cars from Avis and she said that it is now almost part of her daily routine. I was surprised when I was getting out of the car that the lady had already put my wheelchair together, when most people don’t even know how to put my wheels on my wheelchair.

If I am traveling alone it can be a little stressful trying to get around, but I love traveling and I don’t let it stop me. My travels always end up turning into some kind of adventure. So to anyone that has a disability and you want to rent a car, give Avis a try and I hope you a have a good experience like I had. Here is a link to all of the information you need on their website: http://www.avis.com/AvisWeb/JSP/global/en/rentersguide/policies/us/policies_landing.jsp


Tammy Wilber
~Happy Travels~
(By the way, I do not work for Avis; I just wanted to share my positive experience about renting a car with their company)

What is the difference between “Barrier Free” apartments versus an “ADA” apartment?

When you use a wheelchair it can be hard to find accessible apartments and housing. Over the last 10 years, I have always been someone that rented an apartment and at one time I even had a small house. The internet is very helpful, but when I have gone online to find apartments, I always googled words like “wheelchair accessible apartments” or “ADA apartments”. A lot of information would pop up, but it was still always a challenge finding an apartment that fits my needs as a wheelchair user. I am lucky because as a paraplegic I don’t require a roll in shower or a lot of extra adaptations, but one day I may need things like this. Some simple things that I need in an apartment for it to be accessible would be things such as an accessible bathroom, easy access to reach a washer and dryer, a place to park my car, and access to the front door.

Once I rented a small house with a friend, which was owned by an older couple. When I first called to ask about the house, I did not share with them that I was in a wheelchair, I just asked if the house was on one level and how many steps there were up to the front door. After I saw the interior of the house, I realized it was very small and a ramp would need to be built, but everything else I could deal with. Although, the landlord was really apprehensive about renting to someone in a wheelchair, he had his lawyer draw up some papers, and asked me to sign them. Basically, the legal documents said that I would not sue him if I was to ever fall out of my wheelchair and hurt myself on the property. The main reason he wanted me to sign the legal document is because he said the house is not meant for someone in a wheelchair to live in. The papers also said that if I built a ramp it had to be removed when we moved out. I called the American with Disabilities Act hotline and asked them if this was legal and they said no. Even though I felt discriminated against, and didn’t want to sign the papers, I needed a place to live. I felt that it was wrong of them to do this because when you really think about it; there is no difference between me falling out of my wheelchair and hurting myself versus someone tripping and hurting themselves.

Just a couple of years ago I was looking for an apartment and felt like I was getting nowhere. One day I stopped by an apartment complex and wanted to look at an apartment and the office manager felt so bad because the “model” apartment that they show people was up a flight of stairs. She was really helpful though because she said that she thought that their sister property probably had an opening for a “barrier free” apartment. I had no idea what she was talking about? What the heck did “barrier free” mean? What I discovered about this terminology is that it seems to be a way to describe apartments that have access for wheelchairs, but may not be up code with the Americans with Disabilities Act. So, this is what I want to know from other people: Am I wrong about this, or is the term “barrier free” a way for an apartment complex to get around the codes of the American with Disabilities Act? I have seen apartments that are considered ADA approved and most of them seem to be up to code. A good example of some things that ADA apartments have that mine doesn’t is the kitchen has accessible/roll under sinks, low counters, handles and grab bars in the bathroom, maybe a roll in shower, wide hallways, push button doors, among other things.

Well, I ended up looking at the sister property and was shown an opening for a brand new “barrier free” apartment that was just newly renovated. The apartment I live in now works for me, but I am not sure if it would work for someone in a power wheelchair. So, what is it about the apartment that I currently live in that makes it “barrier free”? Well, it has accessible parking, there is easy access to the front door, all of the hallways are wide, and there is one very large bathroom instead of two. I assume all the other apartments that are above and below me with stairs, have two bedrooms and two bathrooms.

So, my advice to others is to do your research when you go apartment hunting. If you can be somewhat discreet when inquiring about accessible apartments because I have noticed that as soon as I started talking about the ADA , some people just shut me down. I believe that they know their apartment complex is not up to the code of the ADA, and they worry about renting to someone in a wheelchair. It seems like a lot more people respond positively when you talk about “barrier free” apartments. If you should happen to rent an apartment that is barrier free, you can make requests to make the apartment more accessible to your needs. When I moved in, I asked them to put in a lower peep hole in the front door for my personal safety so I can look and see who is at the door. They even offered to put in grab bars for me, but I said I didn’t need them. There are other things I have suggested as well, but it is a slow process. I just hope that suggestions I make to them will make the apartment complex more accessible for other people in disabilities, and they can learn from having a tenant in a wheelchair.

Tammy Wilber
~Living independent and barrier free~