Rheumatoid Arthritis is not a one size fits all disease. It affects people of all ages, color, and gender. It can be insanely debilitating for one person and a mild annoyance for the next. This also holds true in the course of a person’s disease. That is what makes RA such a beast at times. This disease tests you mentally and physically.
Over the years I have met all kinds of people that have RA; from the very young, to the elderly. I have watched some endure extreme, crippling pain and still manage to smile through their day. Each person has their own breaking point. There is no right or wrong when it comes to how you deal with your symptoms. Everyone has their own pain tolerance or aggravation level. I am a redhead. From what I have been told from Anesthesiologists that typically redheads have a lower pain tolerance and they take more anesthesia. I know that I have personally experienced this during procedures.
For me, it isn’t so much the pain that bothers me. It is the loss of function. I was diagnosed a few years ago and up until recently I really can’t say that my disease has affected me all that much. Sure, I have had bad days. But for the most part, I have been lucky.
8 months ago, I made the decision to switch Rheumatologist. Because of the time involved in switching doctors, getting an appointment and for this new doctor to do her own testing, I was without medication for many months. Most of the time my pain has been pretty manageable. I have had some flares that have tested me physically and mentally – but all in all the pain is something I have come to get used to. What is hard to get accustomed to is not being able to do everything I am normally able to do.
Inset expletive here…..I finally broke down and purchased a cane. Yes…you are correct. I found the whole process embarrassing and found myself cursing at myself for having to break down and do it. This is not the person I want to be. I stood in CVS for what seemed to be hours looking at all the different canes, their colors, and their styles. While there I saw one of my old patients come into the store and I quickly ducked in the toilet paper aisle. You would have thought I was a teenager trying to buy his first box of condoms and the lady from church walked in and saw him. Seriously! I did not want them to see me like this. How stupid is that? What difference does it make. Right???
Having to use mobility devices to help make things easier shouldn’t be an embarrassing thing. I don’t know why I was acting like a child about it. Maybe it’s the loss of control over my symptoms. Maybe it is admitting that this disease has gotten worse. Maybe it is accepting my current condition. Maybe it is accepting help – which is hard for me to ask for. I am not sure. For whatever reason, I felt all of that same horror that teenager buying a pack of condoms felt.
Crazy isn’t it???????
The loss of function for me is the worst part of this disease. I want to be able to do everything on my terms, not the diseases’ terms. My family and I just recently got back from a few days at Disney World. This time this trip was incredibly hard for me. Previous trips I have gotten through with minimal problems, but this trip was rough. At one point I ended up leaving one of the parks early to go back to the hotel to rest while everyone else continued on. I felt heartbroken that I couldn’t keep up. Walking through the park with my trusty cane folded up in my backpack in case I needed it, using my disability pass to minimize the wait times, resting as much in between rides, and I still couldn’t do it. Thankfully my family is awesome. We have Annual Passes to Disney World and that allows us to visit many times during the year. Because of that, we don’t feel the pressure of having to see everything or do everything each time we visit. But it is still hard to accept not being able to keep up.
The last day of our trip I was wearing one of my arthritis t-shirts. My daughter and I stopped by one of the shops and picked up one of the Celebration buttons. My daughter asked if I wanted to put something on it to celebrate the fact I am walking through the park even with my RA being angry. So I picked up a button and continued on throughout the park. A lady stopped me at one of the rides and asked me if I could explain my button. “I AM ABLE”….she a
sked me what does that mean? I explained to her that I have RA and that sometimes it is hard to do simple things. For me, being able to be here at Disney with my family and to walk the many miles each day at the parks is a huge deal. She asked me many questions about Rheumatoid Arthritis and how walking at Disney is no small feat. When she left my daughter hugged me and said that no matter what she is glad I am able to what I can.
That is when it hit me. I have these incredible unrealistic expectations about myself. Just because my RA is ugly right now doesn’t mean that I will always be like this. (well I hope to hell not) I really need to stop being so hard on myself. I looked back at the number of steps I walked during our trip. I averaged walking over 7 miles each day of our 5-day trip. That isn’t too bad.
I know that things are difficult for me at times but that is ok. It is ok to pass on going out and doing things. It is ok to limit the things I do today so I can have a good day tomorrow. It isn’t giving into the disease, but rather being smart. One of my favorite sayings is, “Work smarter, not harder!” I need to practice what I preach!!
In a few weeks, we will be back at Disney for 5 days. My daughter will be competing with her cheer team at the ESPN Wild World of Sports. I am excited!!! Between now and then I will try to take it easy so I am able to do all the things we have planned. But its ok, if I can’t…….I have RA, but it doesn’t have me!!!!
PS: Since I lost the files of my old blog I will be posting more about how to travel and traveling to Disney with RA