The Broken Record That Keeps On Giving

As a gal living with Rheumatoid Disease, I face challenges day to day, often those challenges being the correction of what people think I have, as opposed to what I actually have.  I know, I know, I probably  sound like a broken record half of the time, but I wouldn’t have to if people would just LISTEN the first time round. So here I am today, sharing the differences again… Hopefully this time is the charm…

1) “Oh, you have Rheumatoid  Arthritis? Everyone has that. I think I might have it.”

No. Correction: “Everyone” does not have that. And trust me when I say, if you have it, you would know.

* First off, the main difference between Rheumatoid Arthritis and Osteoarthritis, which is a much more common variety of arthritis, is the symptoms. Osteoarthritis is caused by the eventual  breakdown of joints over time, which is why it’s so common in the elderly. Rheumatoid Arthritis  is an autoimmune disease where your  body’s immune system actually attacks its own joints. These are two different types of arthritis, that provide two very different outcomes on the body.

Osteoarthritis  is the most common form of arthritis. When most people are referring to arthritis, osteoarthritis is typically the form they are talking about. While Osteoarthritis  is known  to affect the elderly the most, it can happen in younger ages as well. It’s based on the wear and tear of the cartilage of your joints, so weight gain, joint injury, work that engages using your joints often, and genetics, can also play a role in getting this form of Arthritis.

Rheumatoid Arthritis, or Rheumatoid Disease, is more common  in women, even more so after the age of 40. But it’s not only limited  to that age, obviously, and also is seen in younger children, known as Juvenile Rheumatoid Arthritis. Rheumatoid Arthritis is an autoimmune disease that causes pain, stiffness, and swelling in the joints. The most commonly affected joints are the hands, wrists, feet, knees, elbows, ankles, and shoulders. But this disease is a double edged sword, as it not only causes pain through the inflammation of those joints, but also affects your body’s organs and immune system as well.

So unlike Osteoarthritis, which causes pain in the joints, and stiffness in movements, Rheumatoid Disease also attacks the body. So on top of pain, stiffness, swelling, and decreased mobility over time, patients with severe Rheumatoid Arthritis also have to deal with decreased immune systems, that make us vulnerable to life threatening illnesses. Our disease also opens us up to bone thinning, which can in turn lead us to Osteoporosis, another disease that I now have because of RA. I have to administer a daily injection into my belly with a sharp, painful needle, to deliver a medication called Forteo into my blood stream. Every single day. And, yes, it does hurt.

Patients can also get heart disease, stroke, several forms of cancer, lung problems, tuberculosis, anemia, and vasculitis, just to name a few. As well as host a laundry list of other issues including, but not limited to, depression and anxiety disorders.

So, please, before  you open your mouth to state that “everyone ” has my disease, or in fact that you have it too, when you don’t, just think about the truth of your statement. Because blurting out incorrect facts to a person with a legitimate disease is beyond frustrating, and tends to make you look the fool.

2) If you exercised more, you wouldn’t be sick.

You know how people cringe when they hear certain sounds? Like nails on a chalkboard, or a metal chair being scraped back on a hard floor? Sounds like that tend to pull an involuntary response from us, a shudder, or a full body tense-up, that leaves us uncomfortable and stiff. Well, that tends to happen to me anytime I hear the phrases:

“If you exercised more you’d…

“If you were vegan or vegetarian, I bet your disease would go away…

“Healthy people don’t get sick, so you’re just living unhealthy…

Really…? REALLY????

Remember how I just talked about not wanting you to look the fool? Well, you might wanna go back and read through that again. First of all, there are THOUSANDS of people who have thought they were living completely healthy, active lives, who’ve turned around one day, and (BAM) they have cancer! In fact I just caught an Uber ride-share a few weeks ago, and my driver told me his sister had just passed away from stage 4 pancreatic cancer. He was of course devastated, but even more so because his sister had no idea she was sick until the very end! She lived an extremely healthy and active lifestyle, taking part in countless marathons and triathlons, and was funnily enough, vegan.

I understand that it is very trendy right now to be vegan, gluten free, vegetarian/pescetarian, wheat free, raw diet,  green living, wonder hippies. I’ve seen the articles, read the magazines, watched the reality shows. I’ve seen the celebrities with their mats in one hand, being photographed on the way to Bikram yoga, with their kale chia smoothies in the other. Everyone is skinny and toned and tanned. Well, I might be too if I had a hundred thousand dollars a year to spend on a personal trainer, personal chef/nutritionist/dietician, have a sun bed in my home gym, and could afford the new Kate Hudson clothing line. Then again, maybe I couldn’t.

I’ve been sick for almost four years now. But truth be told, in that first year, diet and exercise wasn’t a large concern for me. I was still fairly active, going on walks and hikes, and weekend trips to the beach happened more often than not. But I was still eating fast food, and junk food, and basically whatever I wanted. Prednisone had not yet affected my weight, like I had been warned it would, and I was still fairly slim, and curvy.

It wasn’t until year two, and now three, that my weight drastically changed. I developed Cushingoid, also referred to as Moon Face, which meant my cheeks and chin ballooned out, causing my eyes to look sunken in, and everything else to just look fat. I gained 75lbs over the course of two years, that rested mostly in my belly and breasts. And once the weight gain became noticeable I completely switched my diet. I cut out soda, fatty snacks, trips through the drive-thru, candy, and a lot of carbs. I started drinking more water, eating tons of fruit and vegetables, and only eating healthy proteins, and very little carbs. The thing about Prednisone though… is as long as you’re on it, you’re going to keep gaining weight. My doctors have told me I could be eating the tiniest amount of food possible to get by, and be working out hours upon hours a day, but if I’m still taking steroids, I might as well be eating all that junk I gave up. I’m still going to gain weight. Now, will I actually  keep eating that junk? No, of course not. I like my diet now. I like my fruits and vegetables. I like drinking water and tea instead of coke. And I love cooking for myself, which means I control what I put in my body.

I live a pretty healthy lifestyle right now. The other night at my family’s home, I ate a giant serving of Kale salad to start, followed by 2 oz of roast chicken, half a roasted red potato, and 6 spears of asparagus. I was full. And I refused dessert later on as well. Not because I’m dieting, but because I truly did not want it. I was still full from dinner, and didn’t need sweets to end my evening. I’ve learned that I do better “grazing”, eating small healthy meals throughout the day, instead of 3 large ones. And as I said before, I snack mostly on fruits, vegetables, and healthy proteins now. I truly cannot remember the last time I went to McDonalds, or ate a bag of chips.

So to recap… I eat a healthy, well rounded diet, that leans more towards Vegetatian than Omnivore. I get regular exercise when my body allows it, usually 3-4 times a week if I’m feeling good, and 1-2 when I’m struggling with pain. I drink well over 8 glasses of water a day, as well as juice and tea. While I love dessert, I never overindulge, usually only eating something of the sweeter variety 2-3 times a week, and only in moderation. And I take care of my body, meaning I use a fantastic skincare regimen by R+F on my face, I moisturize my limbs daily, and exfoliate dead skin as needed. For a “sick” person, I do more than the average patient in attempts to stay as healthy as possible and not add to the stress my body is already under. So PLEASE think before you speak when you tell me I would be cured if only I lived a healthier life. Because I’m betting if you really knew me, you’d be surprised to learn how very healthy I am, despite my incurable disease. Hell, I might even be healthier than you!

3) You should just go off your meds. I bet you would feel better if you stopped taking so many drugs.

When people tell me this, I have a really hard time with the struggle to not hit them in the face. The rage that consumes me runs deep, that’s how very serious I take this comment.

Going off of pain medication isn’t like the decision to stop taking Advil for your work-related headaches. It’s not like switching to a different multivitamin. And it’s certainly not a decision that can be made on the fly because you’re not a fan of Big Pharma. To be clear, I am not a fan either. But for now, Big Pharma is responsible for keeping me ALIVE.

I have gone off my meds on purpose, twice, in the last three and a half years. And to be clear, I didn’t even stop them cold turkey. I tapered down slowly, per recommended guidelines given by my doctors. However, that didn’t matter. My body freaked out from the withdrawal of much needed medicines. Medicines, that sole purpose is to keep me mobile, that help me walk and live an active life. I stopped talking them, or rather aggressively cut the dose down because I was tired of the side effects. Prednisone, for example, has caused 75lbs of weight gain, and while I remain on it, I continue to gain weight.

I had an appointment with a Neutologist last month, whom told me that as long as I’m on prednisone, I could be the healthiest woman alive, and it would mean nothing. I could starve myself, eat less than 500 calories a day, exercise until I bleed, and if I’m still taking he steroid, I will still gain weight. That kind of fact is hard for me sometimes. I hate looking at this body that I don’t feel is mine. And when I get really down about it, sometimes I think ‘why not just go off my meds?’

But every time I do, I end up in the hospital, with either catastrophic withdrawal symptoms, or worse… to be clear, none of us want to be in the hospital. It’s not like a vacation from reality, or a chance to ‘take naps all day’ like one idiot suggested. Being in the hospital sucks. 

It’s all also extremely expensive. So before you think about commenting on how my life would be better if I went cold turkey on all my meds… I want you to stop and really think about what you’re telling me to do. You are asking me to not only put my life in danger, but also possibly die. And for all of you out there who don’t have chronic illnesses or diseases, none of us “sick people” have a death wish. We actually want to get better.
So yeah, maybe I am a broken record. Maybe I have told you and others many times what is and isn’t okay to say to someone like me. I’m just hoping one of these days it’s going to stick. That one day, hopefully not too far in the distant future, I can have a conversation with someone that doesn’t involve their “great advice”. Because at the end of the day, unless you have the letters MD attached to the end of your name, your “advice” is more harmful than you know. Stick with what you do know. Be a friend. Be helpful. Listen. Read medical journals if you truly want to know about my disease. Read facts that don’t come from Yoga magazine or from your fave celebrities’ hairdressers best friends nutritionist who knows a guy that had a girl who has what I have. Stop talking about what you don’t know, and concentrate on what you do.’you have a friend who is ill, and she just needs you to listen, be kind, be thoughtful, and just be there.

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About sixthousandsteps

In March of 2013, I was diagnosed with chronic Rheumatoid Arthritis and was told my disease was very aggressive. Every day since then has been an ongoing struggle and life lesson on how to stay positive and keep fighting. This blog is a glimpse of how it all came to be, and who knows what the future holds.

Posted on November 3, 2016, in The Journey and tagged , , , , , , , , , . Bookmark the permalink. Leave a comment.

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