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My Weight Loss Journey with RA

Anyone who says that exercise is easy, is lying. Especially for those of us living a #chroniclife. 
If you’re on the fence about starting exercise, do it.
It’s a decision that I can guarantee you will never regret. 
 
I know this may sound a bit corny but my New Year’s Resolution this year was to lose some weight.
I’ve written a little bit about my weight gain here, but to be completely honest…I haven’t been completely honest. For obvious reasons. I was/am ashamed, embarrassed, humiliated and I really didn’t want to bring attention to my growing midsection that has nothing at all to do with creating a miniature human. But actually, the main reason is I didn’t think I could lose the weight and it has everything to do with my RA. To recap, in the last 8 years since my RA vengeance, I’ve gone from weighing 98lbs to being in a wheelchair, walker, cane, to walking sans assisted devices, to a whopping 138lbs. (This may not sound like a lot to you, but keep in mind, I’m 5’1” and small framed. Normal weight for my size is 105lbs.) I’ve been on high dose prednisone far too often, done countless cortisone shots, *tried and failed* Enbrel, Remicade, Actemra, Methotrexate, and Arava. Now I’m doing well back on Methotrexate (after over a year break), plus Plaquenil and Orencia. 

 

So, my concerns about losing weight were/still are:
  1. My meds won’t let me lose weight. Many people, including myself, have expressed the opinion that weight gain is a common side effect to any/all treatments. I don’t believe that’s true for everyone, but I definitely believe it’s true for me. After starting treatment, I never ever got back down to 100lbs, but to be completely honest, I don’t care! Weight gain as a side effect still makes being on treatment worth it. I would choose being able to walk over being skinny with joint damage every day of the week, including Sunday! 
  2. My physical limitations won’t let me lose weight. I’ve spent more years on crutches, in a wheelchair, with a walker, or a cane than I have without some sort of aid. This means I have some muscle atrophy in legs. Plus, I still have trouble walking for long periods, can’t do stairs, can’t run, etc. Basically, I’m weak and I’m slow. So how the heck am I supposed to lose weight without being able to speed walk or run??? Oh and I forgot to mention, I flare up pretty bad the week my Orencia is due, so… even if I could exercise once a week, it’d be restricted to a 20 minute slow walk around the block 3 times a month. This doesn’t look good.
  3. My Gastroparesis means I can’t eat any vegetables whatsoever. The deal here is: I love vegetables. I literally crave salad. I used to be a huge veggie/salad eater before I got diagnosed 3 years ago. Now, I can’t even look at a strawberry without having to throw up. I can’t eat the skin of apples, I can’t eat grapes, nuts, or anything fibrous whatsoever. What I mostly eat is pasta, rice, whatever protein like lean chicken or porkchop, and cereal. Basically carbs, carbs, lean meat, and carbs! Oh wait, did I forget to mention, carbs? It’s pretty annoying, but you can see why I’d be concerned about my ability to lose weight. And I do know other RA patients with gastroparesis who were diagnosed as children, like me, who struggle through the same thing.

Now, I’m not completely ungrateful. I obviously know that there are people -a lot of them good friends of mine- that are much worse off either because of dietary restrictions or because they’re confided to a wheelchair.

I know what that’s like. 

 

I remember when we were at our old apartment and I needed help just to get out of bed. I remember trying not to drink water close to bedtime so I wouldn’t have to pee in the middle of the night and have to wake up my husband to ask him to help me get to the bathroom. The nights that I couldn’t help it, I’d quietly and self-consciously ask him to hold my walker (which we called my “boat”) steady while I struggled to shuffle my feet forward the 12 steps to our bathroom. I remember crying when I first discovered my walker couldn’t fit through the door frame of our tiny bathroom. Then, we came up with a plan. I tucked two canes just inside the doorway, so right when I got to the bathroom door, I’d do the ol’ switcharoo. I’d grab my two canes, shuffle the two steps to the toilet, get help coming on and off, and return to my “boat” parked just off the door’s outside molding. Of course, there were many corny jokes going on during these night-time escapades. As soon as I was done, however, I’d feel worn out, like I’d just run a marathon, and my husband would push me in my boat the rest of the way back to bed. 
 
All this is to say that exercise is definitely not easy, not in the slightest. I also know that exercise may not be possible for everyone, but if you think that it is possible for you to do one thing, whether it be raising your legs from a seated position or raise your hands up over your head like a half-jumping jack, do it. 
Even if it can only be once a week, three times a month. 
 
Even after I (secretly) committed myself to the New Years weight loss goal, it still didn’t click right away. Nothing worked until I went to a conference where a doctor told me she believed there was a correlation between weight and disease activity. She told me that it is possible that losing weight might help my RA! You can read about it at here! (We already know that with each excess pound of weight, 4lbs of pressure gets added to the knees. Thank you, Arthritis Foundation! 🙂

It was at that moment I decided it was time for me to help myself.

So, I decided to forget about my weight loss goal. 
I don’t have a scale in my house so it actually wasn’t that hard practically speaking, although emotionally, it was a little more difficult to let go of my New Year’s resolution.
Though I did join weight watchers just so I could keep track of activity and food intake on an app, and I focused on small goals. 
At first, I walked really slow. Then, after about a month, I started walking faster, increasing the time from 20 minutes, to 30 minutes, and now 45. I was barely able to bend down before and now I can do about 20 squats or 5 jump squats. My thighs feel huge to me in an incredibly uplifting and sexy way and my self-esteem has skyrocketed. 

I can run sometimes for almost 2 whole minutes and I really can’t put into words how amazing those two minutes feel. The wind against my face and through my hair feels magical. When I’m not admiring the streak of green trees in my vision, I close my eyes and pretend that I am flying. The sensation of running has become my happy place, even though it is short-lived and my doctor has told me not to run anymore. 
I doesn’t bother me, because I remember that this is not about weight loss goals or exercise goals, its about my health. That is what’s important to me. 

And low and behold, believe it or not, I did lose weight. 
Without a real “diet,” just making healthier choices, I’ve lost 24 pounds. I’m nowhere near my previous 98lbs, but honestly, I’m happy I’m not. 
I think I look cuter this way, and to me, it’s not about the number on the scale or how many times a week I hit the pavement. I do whatever my joints feel up to doing, even if it means laying in bed all day. 
What is important to me is that I try my best at least once a week, and I’m proud of myself for that.

Why I like "Rheumatoid Arthritis" better than "Rheumatoid Disease

When people think of ‘Arthritis’, I like that they think of their grandmother, with mangled hands sitting in a wheelchair.  

When I tell someone, “I have Rheumatoid Arthritis,” I like that they are looking at my Young Face and simultaneously picturing their crippled grandmother.  
The word ‘Arthritis’ doesn’t need to be explained. They know what it is and how ugly it can be. What they don’t know is, to what extent.
There are over 100 types of Arthritis & 350 million people affected worldwide-not including those 350 million people’s family members. 
It’s possible the person I’m disclosing to knows someone with a type of Arthritis, but definitely no one as young as me. 
Then they ask the million dollar question: 
    “…But doesn’t Arthritis only hit at old age..?? 
    “Not Rheumatoid,” I respond, “Rheumatoid Arthritis is the worst of the Arthritides and it can hit at any age. I got it when I was 5.” At this point, their eyes usually widen, followed by a quick in-take of breath. The news shocks them. They know this disease is worse than grandma’s, because I got it so young. They also know my future. 
My future is their grandmother’s present. 
    Then they ask, “Isn’t there anything doctors can do? Medication?” 
    “Chemo”, I respond and methodically enunciate each syllable of my triple-therapy-combination, Methotrexate+Orencia+Plaquenil. 
    “Chemo for Arthritis. Now that’s a phrase that sticks with them. I don’t think the affect would be the same if it was, “Chemo for rheumatoid disease.” 
I like the word “Arthritis.” It suggests Deformity, Disfigurement, Ugliness. 
Which is exactly what Rheumatoid Arthritis is most commonly characterized by. 
It’s painful, it’s ugly, and it’s unforgiving. 
Then I hit them with the cold hard facts. As if mutilated joints wasn’t bad enough.       “For me, my RA has progressed to my stomach (that’s what my doctors say). Three years ago, I was diagnosed with Gastroparesis, which means my stomach doesn’t empty as fast a yours. I process food at 46% of that of a normal person. So I throw up a lot. At best, several times a week, at worst, several times a day.” This is when their face scrunches up, as if in pain. 
    “God, that’s horrible. I hate throwing up.” 
    “Me too,” I laugh. 
    “I’m lucky though,” I continue, “RA can progress to the heart and lungs, and even cause blindness. I get checked for that stuff all the time, but so far-so good! 
RA is like Lupus’ stupider, uglier, fatter cousin,” I giggle. I like my analogy to Lupus. People know Lupus too. This is typically when their eyes close and their head starts to shake, jaw clenched, as if to say, I don’t need to hear anymore, but they’re too polite to say so.
Then the most sought-after question follows. The one that is never absent during my RA disclosure. 
    “Gosh, how do u stay so positive?” 
Without skipping a beat I say, “I’m grateful for today. That today I’m doing OK because with RA, tomorrow is never promised.”
 I do believe people’s preconceived notions of what 
Rheumatoid Arthritis is or isn’t, is a problem.  
I can’t tell you how many times my college professors/administration have put me down, 
believing that because I “look” fine, that I am fine.

That being said, however, I definitely think it has more to do with 
spreading awareness and education, than just a simple name change. 
Awareness doesn’t have to be some big grand gesture or even a blog post.
It can be something you do at home. 
Sharing your story with the lady in the checkout line.
Changing your world.
One person at a time.

RA and Weight Gain

  I needed this so much today!
A month ago I decided that one of my New Year’s Resolutions would be walking around my block 4 times a week. 

My goal is to build muscle and if possible, lose some weight. I know most people would tell me that I need to have a more concrete goal, but because I have Arthritis, Polycystic Ovarian Syndrome and Gastroparesis, it’s really easy for me to gain weight and really difficult for me lose it. In PCOS, weight gain is practically inevitable. 
 So I’ve been trying my best to commit to my 4x a week walking goal and I’ve been doing it! Some weeks I can only do 3x a week because of flares or whatever, but other than that, I’ve really been working hard to stick to it. 
Well, that was until yesterday, when I stepped on the scale and saw that I was 3 pounds heavier! I was just so discouraged that after all that walking I could gain weight! 
Having RA and other Chronic Illnesses often means losing your “good looks” faster. With all the treatments I’ve been on and off, I don’t feel like “looks-wise” my 20s has been my peak- unlike other people my age. 
But when I saw this picture, I was reminded that I’m not like other people and 
I AM TRYING MY BEST. 
A little over a year ago, I couldn’t walk without a CANE.
SO, I figured out that I need to stop beating myself up & keep P E R S P E C T I V E.

I’m not using Rheumatoid Arthritis as an excuse for not exercising
because I don’t believe illness can be an excuse. 
It’s called a REASON  
It’s Reality. It’s my Reality
and keeping that in mind just makes me want to fight harder.
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