When my doctor first prescribed Prednisone I thought I had found a cure. After just a couple months of severe pain, without knowing what was going on, taking steroids zapped it away like it was never there. I convinced myself that I wouldn’t even need other medications for my RA. I mean why take anything else when I felt so good on the Prednisone? But my doctor cautioned me that I could only be on steroids for a short period of time because of the many bad side effects that would happen. I truly thought he was overreacting or talking about other patients, certainly not me.
Over time we came to realize that a lot of RA medications didn’t work on me. Either I had allergies to them, I built up a tolerance, or they just weren’t strong enough against my ever growing severe disease. And so I stayed on Prednisone much longer than my doctor would have preferred. In fact three years later, I am still on it. True, my dose is much smaller than it was in those first days, but the side effects were still the same.
The weight gain started out as a slow crawl. In fact, in the first year of being on steroids I thought that I was just lucky and had escaped the side effects everyone else would bemoan. The telltale “moon face”, medically known as Cushingoid, wasn’t happening, and I seemed to be faring well with the drug. It wasn’t until year two that I started to see the change. Again, it started slow, and then suddenly I looked in the mirror one day and there was “moon face” looking back at me. The weight started really piling on around the 16th month. Now I can honestly say that I have gained 80 pounds while being on Prednisone.
80 POUNDS! Shocking isn’t it? At first it was most noticeable in my face and breasts, and I thought I could handle a puffy face and a bigger cup size. But eventually it moved to my belly and now I look like I’m 8 months pregnant. I am disgusted when I look at myself in the mirror. It’s not me looking back. It’s HER. The girl who has this life I never asked for. The girl who carries all this pain and sadness and FAT.
And the absolute worst part about all of it is that I eat healthy. I know of cases where people start to put on the weight and they just decide to let themselves go because why not, it’s already happening. But that’s not me. I care about my diet, and my weight, and my body. I have a very healthy food regime, I count calories, I do portion control, I rarely allow myself to snack, and yet.. Nothing I do helps. It just keeps coming.
A typical day of eating looks like this for me:
Breakfast- one cup of tea or coffee, oatmeal, and a piece of fruit.
Mid-morning- a cup of tea (usually Yogi detox or slimming tea)
Lunch- salad, or roasted vegetables and quinoa, or dinner leftovers, or a healthy sandwich
Dinner- 4oz protein (fish, steak, chicken), steamed vegetables, quinoa or brown rice
And that’s it! Does that seem like the kind of diet that packs on the pounds?? No. My weight gain has nothing to do with what I eat. Prednisone is such a terrible terrible drug. I can look at a Snickers at the register at Safeway and gain two pounds, eating not required. The contents of my fridge are very boring. I have milk, cheese, juice, water, and fruit and vegetables in my fridge. My freezer is filled to the brim with bags of steamable vegetables, and frozen proteins. No ice cream, cookies, or chocolate. No pudding cups, or candy, or desserts. All I have is healthy food. My cupboards/pantry hold spices, oatmeal, soups, tuna, and rice. I don’t keep crackers or cookies or anything that could ruin my diet in the house, to avoid temptation.
And still, every morning I wake up and look into my mirror and see her. She won’t let me go. If only one day I will get to glimpse the girl I used to be, just once.
So you know what can be really hard to deal with, when I’m already faced daily with this depressing sight? A constant reminder that I’ve gained weight. Because, if this writing hasn’t already convinced you, I am very very aware of the fact that I have gained weight. I have successfully used a mirror every day since I was probably three or four years old. I know how they work. You look in, and you see what you look like. It doesn’t take a genius to figure it out. You don’t even need to be intelligent. My cats know what the mirror is, for goodness sake, and they love their reflection (good for them).
I know what I look like. I’ve been dealing with the changes every day for the last couple of years. I’ve dealt with the stress of trying clothes on in fitting rooms and realizing I’ve gone up another size. I’ve dealt with putting old clothes in storage because they don’t fit anymore, but I’m unwilling to part with them. I’ve dealt with learning new makeup tactics to slim down my face. Ive dealt with my hair falling out in clumps. I’ve dealt with less and less male attention as my body has grown round and unattractive. I AM AWARE THAT I’VE GAINED WEIGHT.
And in this very aware state of mine, you know what’s really unhelpful and hurtful? The constant reminder of the fact. You do not need to tell me. I already know. I knew before you had the idea in your head to tell me. I knew before you woke up this morning. I knew two years ago when you were still in denial that I was sick at all. Telling me what I already know serves no one but yourself.
I read a really great article today on RheumatoidArthritis.net talking about people giving unsolicited advice to people with chronic illness. The author made a really great point that I think can be applied here as well..
“Dispensing unsolicited health advice to someone with a chronic or terminal illness (or any illness) isn’t really a way for people to help the sick person, but to help themselves deal with the harsh reality of sickness and their own mortality. It’s like picking on someone else to make yourself feel better. Don’t tell a sick or injured person what they should do, because it’s a sneaky and harmful way of dealing with your own fear of death,” “You’re saying, tsk tsk – I wouldn’t let this happen to me the way you’ve let it happen to you.”
“Giving advice to people…blames the sick person for your discomfort with their reality and shifts any accountability you feel back on to them. We have ethical responsibilities to the vulnerable in our communities – and we find excuses to avoid them.”
I could not agree more if these words came from my own mouth. In fact I’m sure the author and I share some sort of psychic connection. This statement while talking about giving medical advice to the chronically ill, can be used in the same context for weight gain for the same group of people.
We already know the problems that we face. We can see our bodies change and we know we have done everything in our power to change it. But there are some things beyond our control! It’s not like weight gain for a regular person. Our weight gain has nothing to do with binge eating, or portion control, or living on a diet of Oreos and McDonalds. Most of us with chronic illness are on very strict diets due to the medications we take. More often than not, we don’t even eat full meals because food makes us nauseated and/or sick. I’ve had days where I’ve eaten nothing but breakfast because for the rest of the day I felt nauseated and gross. Or just not hungry.
So when people give us ‘advice’ about how to handle our weight gain, it really comes off like a slap in the face. It’s insulting. Do you really think I haven’t tried everything I could possibly think of already to get rid of this excess weight? Do you think I’m just sitting at home twiddling my thumbs and eating a King Size Milky Way and lamenting about why I can’t lose weight? Trust me when I say I have tried whatever you want to suggest to me. I’ve done almost every fad diet out there. Gluten free? Tried it. Dairy free? Tried it. No/low carbs? Tried it. Only eating fruit til noon? Tried it. No dessert, sugar, salt, flavor, butter, fat (etc) of any kind? Tried it. Miracle supplements? Tried it. Vegan/vegetarian? Tried it. Lemonade diet? Tried it.
I’ve tried everything you can think of and some that you haven’t read about yet but will tell me about as soon as you have. Please do not insult me and my intelligence by suggesting that I am sitting around doing nothing to combat this disease that has settled upon my body. And I’m not just talking about the weight gain here. I have tried numerous medications, treatments, remedies, and “cure-alls” in my attempts to fight my incurable chronic disease. For you to suggest otherwise is extremely insulting and disrespectful.
Perhaps instead of spending so much time telling me how I should better my life and my health practices you should concentrate on your own. Go ahead and look into that mirror and think long and hard about why it’s so important to you how I look and feel. Read over that quote again from RheumatoidArthritis.net and think about who this lecture really is for. Because I have my stuff handled. I am doing everything in my power to get well and fight this disease. I am very aware of my own mortality, and they way I live my life. So next time, before you want to share your “advice” about how I should handle my body, my disease, and my life, I urge you to look into that mirror on the wall and ask yourself who you’re really worried about. I think the answer may shock you.
**Excerpt taken from “Don’t tell RA patients what they could be doing to cure themselves” by Angela Lundberg on http://www.rheumatoidarthritis.net**
Thank you for taking the time to read my blog. If you would like to help support my fight against severe Rheumatoid Disease and Osteoporosis please visit my page at http://www.gofundme.com/sixthousandsteps