“Why I am entering my name to be considered for the handicapped van”
Hi, my name is Kathleen Rodgers and I have been suffering from severe Rheumatoid Arthritis since I was 12 years old (for 36 years now). As a result of this horrific disease in which my body’s own immune system has turned against me and attacks healthy cells all over my body, I have had over 40 surgeries including multiple joint replacements, joint fusions, and multiple miscellaneous surgeries resulting from the disease itself and the medications that depress my immune system.
Before this disease struck I was a very active and athletic young girl. I have now been reduced to a point that most of the life is spent in bed or in the electric wheelchair as I can only walk for short distances due to the joint damage and the lung damage (and disease) that my body has and continues to sustain. All of knuckles have been replaced, one of my ankles has been fused, parts of my toe has been amputated, mutiple joints on toes have been fused, I have had 7 hip replacements or revisions to the right hip alone (5 of them in the last 4 years) as well as multiple knee surgeries for ACL and meniscus damage and ultimately a knee replacement just this past Sept, and this will only continue to worsen as life goes on.
Back in 2005 as the disease progressed rapidly we purchased a new Dodge Caravan and had it converted with a wheelchair lift and special accelerator and brake controls that can be hand-operated. This allowed me some freedom whereby I could still drive my son on occasion. This van and my electric wheelchair have been my only means of partial freedom from the pain and mental torment this disease has over me. Back then my husband was CEO of a mortgage company and funds for retrofitting our house for handicap accessibility and the new van were not a financial burden. Since then, however, my husband’s mortgage company collapsed as did many others in the mortgage crisis. He had a complete breakdown at that time and is just recently coming to grips with the fact that he is no longer a mortgage executive with the money to take care of the special needs that I have. He is now grossly underemployed but at least he has a stable job. However, he no longer makes enough money to even meet the basic housing expenses as our house is now in foreclosure and we have no idea where we can go to live due to the necessity of wheelchair accessibility.
The van we now have has well over 100,000 hard miles carrying almost 400 pounds of wheelchair along with the weight of the lift. All this has taken a toll on the vehicle and has left me stranded multiple times in the last year which is terrifying to me as I have no way to even get my wheelchair so I am stuck until help can arrive. In addition I had my wheelchair replaced with one that was more suited for outdoor activities and was told that it would fit perfectly with my current lift (my old chair is constantly dying on me and we are having to pay for repairs to it ourselves as it is no longer covered by insurance) but the first time we put it in the van, the lift became disabled due to the increased weight so I have had to resort to using my old and unreliable wheelchair as it is the only thing that fits in my vehicle. So not only do I worry about the van dying on me, I also have to worry that when I arrive at my destination my wheelchair will not be working, but we cannot afford to buy a new van or even to replace the lift (which based on the age and condition of the vehicle we have been told would not be advisable to do).
We used to have perfect credit and good income and would’ve replaced the van by now but this is no longer an option as we are even losing our home. My husband refuses to accept this fact and still talks to custom van manufacturers about the perfect van for me that would give me mobility and freedom to participate in my son’s activities, totally oblivious to the fact we can no longer afford vehicles like this. I also have a 13-year-old son who has had to watch my health go downhill his entire life and now must act as a primary caregiver to me, and watch his father lose the confidence that he once had.
My health continues to deteriorate as a result of all the medicines I have been on for almost 4 decades now and I have constant bouts of pneumonia due to the pulmonary fibrosis I suffer with as well. In fact my arthritis and lung disease have progressed to a point that most of my surgeries and rehabilitation have to be done by specialists attached to Johns Hopkins in Maryland and the Hospital for Special Surgery in Manhattan. I am no longer able to get to these doctors as I am unable to fly due to the need for my electric wheelchair (even if I took it on the plane there would be no way to transport it to my destination upon arrival) and I don’t trust the condition of our older van to even leave the county, let alone the state. My weekly calendar is filled almost daily with visits to local doctors for tests, treatments and more tests. I have had to curtail even my doctor appointments as the condition of the van( which is the only vehicle that can transport my wheelchair) continues to deteriorate. I am unable to ride in any vehicle other than a van or SUV even as a passenger as my legs must be able to hang at a 90° angle to the floor. So, although I have many friends who’ve offered to take me to my appointments I can’t get in their cars so they need to drive my van to take me to my appointments and that still leaves us in the same precarious situation of mechanical failure. The last time I tried two years ago to ride in my best friends Lincoln town car my hip dislocated just due to the angle my legs were at due to the softness and low seating position of the Lincoln, resulting in one of the above mentioned hip revisions.
My story goes much deeper than what I’ve just written but it would be much too long as my medical history alone takes five medical folders to contain all of the surgeries and medical issues that I have. I take almost 20 medications daily day. If you want to learn more about me you can always look at my website: WWW.KathleenRodgers.com or read the interview I did with the Arthritis Foundation (this can be found in 2 parts under the CureArthritis blog at: Part 1 - http://curearthritisblog.com/kathleens-rheumatoid-arthritis/ and Part 2 - http://curearthritisblog.com/kathleens-rheumatoid-arthritis-journey-part-2/ .
A new van now is so vital as when we lose the house in the next 60 to 90 days I may be forced to move away from the safety and closeness of my small town while my husband tries to find other living accommodations. Without a van that is reliable I just don’t know what I will be able to do. We are completely unable financially to repair or purchase a new vehicle so if you could see it in your heart to allow me to be the benefactor of your gift you would be saving my entire family and giving me the one small amount of freedom that I will ever have, and allowing me to have the ability to be involved in some of my son’s events, as well as get to the doctors I so desperately need to see.
It can be so easy at times of flare ups and surgeries to fall into a “why me” attitude and want to just give up, but if I took that approach then I let the disease win out. Instead, I choose to try to find something positive about my situation. For example, when I am in the hospital having repeat surgeries, I find that I can be a source of comfort for many people going through their first surgery or setbacks in rehabilitation by listening to them and offering them advice (if that is what they want) or just a shoulder to cry on. Many times in the rehab centers after surgery, the elderly act often out to the nurses, not because they are being mistreated or because the person has a mean streak but many times it is because they are scared, lonely and just need someone to talk too. That’s where I come in. I’ve been there (out of state surgeries are the hardest as I know how my son hates having me away from him when I am hurting and he can’t watch over me and it is difficult on me not having my husband or son around as well, but I am blessed that in the states I have surgeries in I also have family and friends to visit me ) so once they get over the age difference and their preconceived notion of “what can this youngster really understand”, they find me a great source of positive influence in their day. As such, I have made many friends among the patients and staff at each hospital or rehabilitation center I have been in.
Living in a small rural town (for now I am blessed to live within wheelchair access of the center of town which includes the church and local businesses so I can still get out and see people even when I cannot use my van), everyone watches everything that goes on. Being confined to an electric wheelchair for so much of my time, most everyone in town recognizes me (even if they don’t know me) so I have to be careful in how I respond to my circumstances knowing that people are watching me even when I don’t know it. I have often received words of encouragement via phone calls, letters or even comments from cashiers in the stores about how I am an inspiration to them by the way I live my life always trying to focus on the positive aspects and trying to downplay the negative ones. It is a great circle to be caught in – my behavior lifts up others and their words of thanks lift me up in return – so the circle of love just keeps on going. What could be greater than that?
One area that I take very seriously is in trying to raise awareness for Rheumatoid Arthritis and the many other “invisible diseases” that put so many people into positions similar to mine. I do this through the use of Facebook, wearing blue bracelets, articles sent in to my local newspaper and writing on my personal website for others to read what life is like for me and my family dealing with this on a daily basis (including the struggles and the victories). In addition, my family and I have participated in National Health studies for rheumatoid arthritis since I was a child, in hopes that they can use this information about why some of the family develops the disease and others don’t, to help find a cure so future generations will not have to deal with the pain and life altering aspects of this disease. One of my favorite places to offer my voice is through the doctors that have done my many surgeries. I leave testimonials on their websites to thank them for their help and to recommend them for other patients based on their specialties. I am also on their list of patients that can be contacted by potential patients before having major surgery so that they can call me and openly talk about their fears and concerns before deciding to have surgery. Many times the questions aren’t related to the surgery at all but more often they are concerned with how will they manage to do things once they get home, how will other people react to them when they go out in public wearing huge braces (after knuckle replacement my braces on my hands made me look like Edward Scissor Hands and I caused quite a few heads to turn), how did I handle having to use an electric wheelchair at such a young age and many other questions that patients don’t feel comfortable asking their doctor about. Being there as a source of information or just a caring ear to listen and help calm their anxieties helps me feel useful and gives me some comfort that I am not going through this for no reason at all. Each of us have a purpose here and it is up to us individually to find ours and make the best use of it. I feel that this is my area and I intend to try and do the best I can encouraging others for as long as I can.
I know there may be others that might be more in need of this van than myself and if you find that to be the case and donate this van to one of them that would also make me very happy, as I would know that someone even worse off than I had been helped. Thank you for considering me.
I would also like to say Thank You to all of you who have read a little bit about my health conditions and my need for this van and found it in your hearts to vote for me on a daily basis while this contest continues. I may never know who each of you are that may have helped me to obtain this piece of freedom I so desperately need but you can rest assured that each time I use this vehicle I will be thinking (and thanking) each of you from the bottom of my heart. My thanks go out to each and every one of you for your support. May your kindness be returned to you two-fold.
