We graduated from college and moved away to Lumberton NC where we rented our first house. It was huge for us, with multiple bedrooms and bathrooms. We filled it up with our “stuff” from a one-bedroom one-bath apartment. Guess we were packed in there now that I think about it. It needed updating and the owners allowed us to do whatever improvements we wanted to do. We loved it and thought we were all grown up.
We both had our first “real” jobs. If I told you how much my annual salary was you would laugh, but to us we were rich.
I was determined to never let RA get me down and did everything I could to stay a step ahead of it. Medicine was still not working for me and I had good days and bad days.
On the days that were bad and, there were many of them, they were bad. I recall many days that I would wake up and my hands hurt so bad that I couldn’t even pull the cover-up on me without excruciating pain. Worse than that is that many times they hurt so bad that I could not even scratch my own nose. Can you imagine that? It was bad, but I was determined to not miss work and would do all I could to get dressed.
There were plenty of days that I could not do it on my own and Chip would have to put my pantyhose on me (yes, I thought if you dressed up you wore pantyhose) and he even mastered a ponytail many times. On these days, he was telling me to please stay home and not go to work, but not me, I was going to work.
I remember times that I could not turn the key on my ignition to crank the car but learned I could use a screwdriver as a lever and it worked better for my hands. My hands hurt to even grip the steering wheel but I knew from experience that I just had to keep going, and not give up. I know it sounds crazy but it is true, for me, that the more I did the better I felt.
I didn’t always win though as I remember several times that I ended up in Duke on IV steroids as my inflammation was so bad. But I was always blessed and bounced back quickly.
In this job, for the most part, we were assigned floors that we were responsible for the patients on those floors. My boss told me one day that there was a young girl on my floor that was there for RA and wanted to make sure I was comfortable seeing her. I told her that it didn’t bother me and it didn’t but what did bother me is that I didn’t tell her my story. See I have learned that everyone’s journey is different and the worst thing I can do is to tell someone who is in pain and suffering to not give in, keep fighting, no matter how bad you hurt, don’t stay in bed, but you see when someone looks at me, and I am saying those things they look at me and think “well you don’t hurt as bad as I do, or you aren’t as bad as I am.” So, see when someone has that mindset you can’t convince them otherwise. They must learn for themselves. I can only be an example of how even with RA you can go on, you can lead a normal life, and that even when you are hurting, there is the payoff for not giving in, for me anyway. Today that encounter would be a lot different, but you cannot go backward, only forward and that is why I have chosen to share my journey, so maybe, just maybe there is someone that can benefit from my story.
It was at this same job that I discovered that truth is more important than lying. I will never forget that day and can see the corridor as clear as day that I was on. I was limping, not hobbling, just a slight limp, in one of the long corridors of the hospital and as the employee who went to pass me said, “did you fall off your horse again” and I said, “what, I haven’t been on a horse in years.” She gave me a really strange look and said, “you told me last year that you had an accident with your horse.” It was then that it hit me I had lied to her a year before when she had asked me about limping and I had said I had fallen off a horse. I recall using this line many times before. This time though it made me think how stupid I looked getting caught in a lie and it was that day that I vowed to never lie again about my disability. Now I am not going to say I have always been forthright but I have not lied. You will see those stories later.