I’ve conditioned myself to feel the most positive when I’m in the worst pain.
One day I just decided that when my pain is the worst, it’s my opportunity to dream.
It’s a quiet time when I can dream about nothing else but the people I love and the things I love to do. I can dream of what my next adventure is going to be. Whether it’s traveling to Italy or redecorating our patio.
I can plan what I’m going to do with my friends and family when I get better. I can pray in my heart for all the people affected by Chronic Illness and send them positive thoughts that say, “You will get better. One day.” Every time my bones feel like breaking I dream about all the beautiful things in the world and how I want to see them. I dream of these things and it helps me to keep my head held high. It’s called “conditioning”.
|Tuscany Sunflower Fields
It was a beautiful day. Bright and sunny, with not a cloud in sight as only it could be in Florida, my home state. I sat on the green, diamond patterned metal bench admiring the beauty of all that was around me when I felt a slight squeeze in my left hand, bringing me back down to planet Earth.
“Wanna go on Space Mountain?” asked my husband, his face glistening with a slight sweat but thrilled nonetheless.
“Sure! Let’s go.” I replied, as I flashed him a grin.
We strolled to the entrance of a very familiar indoor roller coaster without a worry in the world. As we walked through rows of metal line-forming bars, the ground sloped and the lights dimmed. Andres and I giggled as we quickly passed moving images of suns and stars and planets. As the ground continued to incline, my pace slowed. Steeper and steeper the floor angled, we joked about how much further we would have to go. Steeper and steeper- OK now- too steep. The pain came and so did the sweat as I huffed with exertion. He soon disappeared behind a corner as he sifted through the line casually. I grabbed onto the metal bars just in time. My knees, they weren’t working and the pain was too much to handle. I tried so hard to keep going, to reach the summit. I felt as though the weight of the world were crushing my now-swollen joints.
Suddenly, I wasn’t in the darkened tunnel of the line, I was in my bedroom- awake now- but something was off. Why hadn’t the pain gone away? Why were my knees and ankles still hurting as though I had just climbed a steep hill? Oh yeah… I remember now. This is just another symptom of a very familiar condition. More familiar than the entrance to my husband’s favorite ride at a popular theme park. These thoughts and images of what really happened on our Disney World vacation flooded my mind. I never climbed that steep hill. The exertion wasn’t my own, it was my husband’s as he pushed me in my wheelchair through the rows of metal bars. The only two things in common of this dream and my reality is the pain that’s always there and the happiness we shared that week.
I smiled as I closed my eyes, realizing that even though the pain will always be there, so will the joy and the laughter Andres and I share be. And that is worth everything in the world to me.
I’m trying really hard to believe these words right now. I feel like I have so many dreams, so many hopes for the future and I’m just waiting to get better so my life can restart.
Don’t get me wrong, I’m not sitting around doing nothing. I’m doing my best and I do believe my best is good enough.
I just want to be able to do more.
Lately I’ve been feeling impatient. Like God made a waste of me by giving me this. On the days I’m feeling really blue, I think to myself, “God, why!? Why did you do this to me?? I could’ve been so great! I could’ve been successful. I could’ve had my master’s degree by now. I was such a hard worker, smart even! Why did you make me this way to just waste all that ambition on a cripple?”
I didn’t realize how angry I was. I know the real answer in my head. He probably gave me this because he knew that otherwise, I would’ve never slowed down long enough to appreciate the little things. Or maybe he wanted to get my attention and knew that my path would never come here if he didn’t give me a nice big obstacle.
Honestly, I can deal with the fact that God gave me Rheumatoid Arthritis. What I’m having trouble with is why can’t I have one successful treatment? Please, God!! I’ve had 5 failed treatments and I’m not sure I can deal with one more. I want to move on with my life! I want to get over this chapter of looking for a treatment that works on me. I want to be able to say, “XYZ works for me and look at all the things I can do in spite of Arthritis.”
I think sometimes you feel happy and you’re dealing with all these things and then it’s like a pin drops on top of you and you break down because it finally gets to be too much. You think to yourself, “I can handle this [enduring the constant pain], I can handle that [the nausea and other side effects].” But then you start loosing the ability to do something you love and it’s overwhelming.
Having this for 18 years has been a roller coaster. I always say, it’s like going through the 5 stages of grief over and over again, but I have to keep hoping.
Believing that everything will be alright.
Maybe not today but eventually.
Today someone told me (multiples times…), “You have to think you’re going to get better to get better. Don’t be so negative. You have to stop talking about negative things. Positive things happen to positive people.”
Most anyone who knows me knows that I am a very positive person. I pride myself in being positive. It wasn’t easy to get here. It was an honest-to-God uphill battle. It took a lot of practice, hard work, and patience.
To me, being positive means accepting my pain and living life happy with who I am even though I have pain. I don’t try to be normal, because I’m not! I’m special and even though I’m not like everyone else I can be just as happy and fulfilled, if not more than those ‘normal people’! I choose to live my life knowing that God gave me this disease because he knew I could handle it and chose me specifically because He knew I would try my hardest to turn it into a positive. What’s so negative about that??
What I like to say is, “I’m not just LIVING with Arthritis, I’m THRIVING with it.”
OK, so now that I’ve posted my New Year’s Resolutions I guess it’s time to begin following up on them, right??
Having Arthritis makes it difficult to do exercise of any kind and these commercials of people hiking and riding bikes don’t help either. It’s true that movement helps ease the fatigue and stiffness, but the ugly truth is that some exercises also makes my pain and inflammation worst! Not to mention, leaves me unable to sleep a wink and out of commission for the rest of the week. Just ONE afternoon of walking at the mall leaves me with red, painful and swollen knees that I later have to treat with ice packs throughout the night.
If you think about it, it makes sense. Inflammation in the joints cause deformation and exasperating it can actually increase this damaging inflammation. Any doctor or physical therapist will tell you that joint pain is NEVER good, which is why it’s super important to listen to your body whenever you do physical activity of any kind, whether you have Arthritis or not!
However, on the flip side, it is important that I move around because unfortunately the stiffness can also worsten my already decreased range of motion and cause muscle atrophy (aka: more problems I DON’T need).
So, not only is it a challenge for me to get up and get going, but it’s also very difficult to find exercises that I can actually do!
So what is a girl to do in this situation?!
Luckily, there is a great resource online called, My RA Fit Kit where you can customize a fitness program based on your personal limitations and interests! I’ve filled it out and here is the program I’m going to get started on today! I’m not sure if this Arthritis-approved workout is going to help me loose 10 lbs….but either way I think it will help. 😉 I’ll keep you all posted on how it goes.
Just go to My RA Fit Kit, fill out the questionnaire, and get moving with me!! Together we will hopefully loose 10 lbs. xD
*I am not a doctor and you must always seek care from a medical professional before engaging in any strenuous activities.*