October 14th, 2017, my brother’s wedding – what an amazing day! We had so much fun and it was honestly the perfect day. I think I danced for 4 ½ hours straight!
A week later I just didn’t feel “right”. The next day October 22nd, 2017, I woke up and couldn’t walk. It was like my brain and my legs couldn’t connect to each other. No matter how hard I told my legs to move, they just wouldn’t do it. It was almost like my legs weren’t my own. I was admitted to the hospital that day and began having testing. Shortly after being admitted I was given three days of IV pulse steroids. That meant 1000mg each day, so paralysis wouldn’t set in. The reason I couldn’t walk was because Lupus had attacked my central nervous system.
I was discharged a couple days later continuing on 60mg of prednisone. Not being able to walk let alone do stairs left a question of what to do when I got home. My apartment has a flight of steps to get in and I was not capable of doing them at all. Friends of ours, who really are more like family, were gracious enough to let us stay at their house while going through this difficult time. Our friends thankfully have a walker and shower chair that I am borrowing while we are living with them. We have been living with them for three months. Because of not being able to walk on my own, I needed help from my loved ones or my wheelchair or walker to get around in any way. It is amazing how quickly things can change. One day you can take a normal shower and the next you can’t even stand by yourself while showering, so you need a shower chair, and that is just one example. Your whole world shifts and you have to adapt. You realize things are not as handicap accessible as they should be or even at all.
I began physical therapy to work on balance, strength and one stair at a time. Yes, just one stair at a time. It has now been three months since this all started, and I am gaining some strength back. I am now able to walk around the house without the walker or wheelchair, although, if I feel unsteady I have a chair to sit on, things to lean on, or something to grab onto. Because things are more controlled in the house I feel comfortable without someone or something helping me to walk. However, outside the house I still use the walker or wheelchair because of balance, strength and stamina. Outside of the house, things become more challenging because of the balance issues and also safety too. I am still not able to do stairs but with a little more time I hope to be able to in the future. Time will tell.
Occasionally I still have days where my brain and legs decide to have a disconnect and not cooperate together, the doctors say this is normal and can continue to keep happening. When this happens there is sometimes no warning and it can be a little scary.
I started a new treatment for the central nervous system lupus. It is a chemotherapy infusion called Rituxan. I received one infusion in December and one in January and won’t receive another infusion for six months. I am now down to 35mg of prednisone, but I can’t go down any further right now because I have had a couple of seizures in the past week. The Neurologist increased my seizure medicine and hopefully this helps.
A stairlift is going to be installed at my apartment soon and then we will move back home. The goal is to continue getting stronger with the help from physical therapy. I eventually want to transition out of the wheelchair for good and just use the walker or cane outside of the house. I feel very lucky considering where I started in October. There is still a ways to go but I am optimistic about the future. Not only did this experience open my eyes but made me realize somethings you take for granted in life. Things can change in the blink of an eye. For me it was something like not being able to walk.
Many of you know that I say that I believe I have Lupus for a reason and I still believe that no matter what Lupus throws my way. Now with these new obstacles I believe I can help even more people because I have some understanding of what it is like to do things in a wheelchair. Things such as sidewalks, parking lots, bathrooms and doorways are not always handicapped accessible. For instance, even if the stalls inside the bathroom are wheelchair accessible the sink, soap and paper towel dispensers are not. Having this new point of view, I now not only want to continue my fight for people with Lupus but for those that continue to live with daily struggles such as being in a wheelchair. I believe that we can improve these situations vastly, even small things to make daily living easier for people. Being in a wheelchair for the past three months I have realized I have gained the attitude of “Oh no, don’t worry it’s fine”, “it’s okay I’ll do it this way” or “I’ll go around”. People who are handicapped shouldn’t have to make excuses but somehow, we do, and it’s just supposed to be okay or is expected. I know that I have only been in a wheelchair for three months and I may or may not have to use it again. However, like I said I still have the sporadic days where the connection is off, and I can’t walk, and the doctors said the lupus could attack my central nervous system again. If it does I will be as prepared as I can. Now the point is, no matter how much or how little experience I have had in a wheelchair I feel like I can help and that is what I want to do. I encourage you to think what it is like for people in a wheelchair and either try to help in any way possible or make suggestions while you are out to a restaurant or somewhere you know there is room for improvement. There is always a way to help someone in the world and now it is time to give back to the people who sometimes sit quietly on the side trying to figure out how to do something by themselves.
“Helping one person might not change the world, but it could change the world for one person” -unknown