As someone who lives with a chronic and debilitating disease, I know first-hand how frustrating it can be trying all the medications and treatments that doctors out you through in attempts to calm symptoms. Because there is no cure to Rheumatoid Disease or cancer the only thing that doctors can do for me is to help ease symptoms, and to stop my illness from progressing further.
At 33, I’ve had this disease at a chronic level for two years. In those two years I have tried 11 medications for Rheumatoid Disease including but not limited to corticosteroids, injectable biologics, and chemotherapy. The steroids made me gain 70 pounds of water weight. And when I say they “made me gain weight” I’m not kidding or stretching the truth.
Prednisone was originally thought to be the miracle cure for patients with diseases like mine. Upon first taking the drug your symptoms disappear like smoke overnight. I remember crying with happiness in those first few days thinking I’d never have to be in pain again. Unfortunately it didn’t last. To keep the painless feeling you have to continually increase your dose, and with that, the side effects start. Insomnia, headaches that led to migraines, skin rash, dizziness, and weight gain. At first the weight gain is slow and not so noticeable. Then one day you look in the mirror and there it is…Moon Face. That’s the nickname that patients using prednisone long term are given because their faces bloat up and become round. We get double chins, our eyes and cheek bones no longer prominent. The medical term is called Cushingoid. And every time my Rheumatologist uses it when punching and prodding my face it’s like hearing nails on a chalkboard.
Luckily not all patients get “moon face”. According to my studies it’s fairly rare and only affects 10% of a million and 70%of those affected are women. Other tell tale symptoms of Cushing’s are skin changes with easy bruising, change in body with weight gain on back of the neck (known more popularly as the Buffalo Hump), general fatigue, decreased sex drive, the list goes on… And of course being one of these 70% of women I’ve gotten most of the known symptoms including the “Buffalo Hump” which basically makes me feel like Quasimodo all the damn time.
Getting back to the point here is that when you have a chronic illness you have been put through the ringer by your doctor in the efforts to find SOMETHING that will work. Countless appointments, countless trips to the pharmacy, countless side effects that often make you feel worse than your original disease, like my experience with Prednisone ended up. Many of the drugs take hold in your body and it can take years to make the break. My doctor and I have tried three times now to ween my body off corticosteroids. Two times that landed me in the emergency room with uncontrollable pain flares, the only way to fix it being a large dose of the same medicine I’m trying to quit.
My point again is that I know more than anyone what works in my body and what doesn’t. My Rheumatologist and I are on a journey together to figure out the right combination of medicines, treatments, nutrition, and rest. I’m going to repeat that again, because this is the important part…
My Rheumatologist and I.
Say it with me “MY RHEUMATOLOGIST AND I”.
I’m going to deviate for some bit and we’ll come back to this.
Yesterday I read a great article on asweetlife.org about the “15 Things Not to Say to Someone with a Chronic or Invisible Illness”. It was fantastic, like the woman who wrote it was reading my mind. She like many others was suffering from a chronic invisible illness and had compiled a stellar list of remarks that people make thinking they are being helpful when really they are bring insulting, degrading, and hurtful. I won’t post the list but one of my favorites was #11.
“Have you tried….” The blank is for whatever word the case happens to be about. And this particular comment spoke to me as it happens all the damn time.
“Have you tried going gluten free?”
“Have you tried losing weight?”
“Have you tried getting more exercise?”
“Have you tried cutting out dairy?”
“Have you read this book by this doctor who found a cure to a disease kind of like yours but not because I have no way of knowing or understanding your disease without actually experiencing it, but he says that if you drink this special drink that you can buy on Amazon for $174 a bottle you will be cured?”
Yeah, all the damn time.
I’m not saying I don’t appreciate that friends and family are trying to help me or motivate me. But FYI: I’ve lived with this disease for quite a long time now. And unless you’ve lived with me every single day since my diagnosis, you have no way of knowing what I have and haven’t tried. You have no way of knowing the conversations I’ve had with my doctors. You haven’t heard the discussions we’ve had over every single fad diet and super cool new treatment that no one has heard about but it’s actually the cure.
People who are ill want to be well. If you think I haven’t read up on all there is to offer on helping me get well, you are wrong. If you think I haven’t tried all the strange and random diet fads there are out there, you are wrong. You were not there with me when I went through that month of only drinking lime and ginger water because a book I purchased at Barnes & Nobles swore I would lose my prednisone weight and cure my inflammation. You were not there with me when all I ate for two weeks was vegetables and green tea because my friends cousins hairdresser swore that it cured her grandmother’s gout. You weren’t there when I went gluten-free, dairy-free and raw vegan for a month because a friend of the family said it cured their friends arthritis.
I have tried them all. Just because I don’t talk about it, doesn’t mean that I’m not out there every day trying to find my own cure.
So when I’m approached on a daily basis asking why I haven’t tried gluten-free, no salt, no iron, magic fungus powder from the mountains of Ukraine that a 100yr old man on a goat harvests himself, I get a little frustrated.
I have a lot to deal with. On top of the pain that I live with every day and never goes away, the nausea and vomiting of every food and liquid consumed, the dizzy spells, the fatigue, the sleeplessness, and the depression that I try very hard to keep at bay, I do not need a lesson on what is going to cure me.
Please please please keep that to yourself. If you really want to help me, like seriously, put your cure book down, click close the page on your computer that swears I’ll be in remission in a month if I start this meal plan immediately, and come over and spend some time with me. Take me for a drive. Go for a walk with me. Talk to me about what’s new with you. Share a funny story about what happened at the grocery store this weekend. But if it’s going to be about a cure or a health plan that you read about or heard about, if you’re not a medical professional or experiencing a disease similar to mine, zip it. We are done.
Now let’s get back to my previous statement, “My Rheumatologist and I”.
Those two people are the only ones that get to talk about what is going to work for me. What my next step in the treatment process is. Where do we go from here. My doctor and myself.
You may be trying to help but it’s incredibly insulting and puts me in a really bad mood when you try to tell me that YOU know what’s best for ME.
I know me.
My doctor knows me.
If you really want to try that cure, then be my guest. We all have inflammation at times, we all deal with nausea, we’ve all at one point or another felt tired. Go ahead and try your miracle cure on yourself. If you see a real improvement, then go tell your doctor about it, let it be known to the world, and then you and I will have something to talk about.
Until then, a delivery of cupcakes and milk would do just fine instead.