Oh, how many times since I was diagnosed with RA or diabetes have I felt misplaced? If you have been struggling with RA or diabetes for a while like me, then it has to be a lot. I feel misplaced when it is sunny and bright and I feel awful and just cannot go outside. I feel it when others are eating ice cream, my blood sugar is soaring and I cannot bring myself to even look at it. I feel misplaced, when my eyes are blurry, my hands hurt or my feet are swollen like two balloons. I am misplaced when my back, jaw, arms and knees feel like I could use a hammer to hit them because that pain would be a relief.
It is true, I feel misplaced a lot. I love to ride my bicycle and yesterday I wanted to go out. To be fair, I do not ride a lot, but I love to go 10 or sometimes 15 miles. Yesterday I got my bicycle out, but I was so tired I just could not do it. When I looked outside at my bicycle sitting there waiting, and me inside trying to muster the physical stamina for a simple ride, I felt horribly out of place, even in my own house. I think feeling misplaced it is a common thread that many of us with RA or Diabetes share.
But it is more than physical activity. I feel so out of place in a group these days. I tend to be fairly upfront about RA and diabetes. Let’s face it, I wear a device on my belt that looks like a 1970’s pager with a tube running out of it. If folks are even half observant someone will ask what is that? I have two choices at that point, I could say I am a throwback concert promoter who hates cell phones, or I can tell the truth and say it is a lifesaving medical device that delivers insulin to keep me alive. Sometimes I go with the throwback concert promoter just for fun. I usually invent bands like the herkies, the swollen joints trio or the hurt boys, to explain this particular genre’ I promote or manage. I have to admit people look at me like I am a lunatic, but that is sometimes easier than telling the truth.
But the alternative is saying it is an insulin pump, I have been a person with diabetes for 41 years, yes I do watch what I eat, yes, I am lucky, yes, I am glad you are doing well, yes I hope cinnamon works out for you, and yes cucumber water is a wonderful drink. In other words the typical very upsetting things that almost form a chant when speaking to others about diabetes. All the time I am wishing I had the courage to say, look, it’s a struggle, I am not your sister, grandma, aunt or cousin. I work my blood sugar every minute of every day I worry about everything I put in my mouth and yes a good deal of the time I screw up. But I don’t say those things because that would make me even more out of place in social settings. Instead, I tend to tuck it in, play along, be nice, give some gentle nudges, sympathize and tell people that diabetes is a process I had mine, they will have theirs and lets do the best we can. All the while I want to scream please stop drinking 7 regular Pepsi’s a day and you will feel better because your blood sugar will not be 400 most of the time.
With RA, I want to say the same sort of thing. Like listen I get that your cousin’s knee hurts. I know it hurts a lot, and that magnets cured it for him. I know that drinking silver is a godsend for your aunt, I get that yucca water stopped RA in its tracks for your cat, but it will not work out for me. First, I don’t believe in those magic potions, and healing devices, and frankly for them to work you have to believe in them. That by the way is the law of fake science, first you must believe with all your heart something is true or not true in order to fulfill your fantasy. If you do not believe in it, then it will not work. So spend your money on the magic bracelets that cure your arthritis, in fact, buy the deluxe version of the newest model on the market. But please do not tell me of the healing power contained in them. I just do not believe in them.
So if I do not believe in Yucca water, cinnamon, cucumbers, ground up cherry pits or magnets to cure RA or Diabetes, then what do I believe in? Well, I believe in insulin, exercise, diet, anti TNF inhibitors, and methotrexate. I believe in the power of science, gene therapy, positive thinking, and medicine. I believe that exercise and losing weight are good and that bicycling is a form of pure joy. I believe in artificial joints, physical therapy and doctors. I do not believe that because your knee was hurt in football you have RA, or that eating or drinking too many sugary drinks gave me diabetes. I do not believe that there will ever be a cure for RA or diabetes for me.
I also believe we are close to solving the riddles of these two diseases not for my benefit but for my grandchildren’s generation. I believe in science, and hope and possibility. If any of that makes me misplaced then so be it because with that belief I can go on.