What To Expect When Expecting RA, Part 2

Well, it's here: part 2 of the hotly (yeah, right) anticipated guide to what to expect when you are expecting RA. In part 1, we covered some of the mental aspects of the illness – how to adjust to a new normal, how to wrap your head around the fact you have a chronic illness, how to properly cut and seal a ¾ inch mortise and tenon joint – you know, just the basics.

This time, though, we are going to go over the more practical things – medication, assistive devices, and, most importantly, how to put on your socks with a stick, a paper clip, and a roll of duct tape.

Starting RA treatment

So, the first thing you’re probably going to be presented with is a slew of medications available for RA and other similar chronic illnesses.

Biologics changed RA treatment

About fifteen years ago, when Third Eye Blind was atop the music charts and complimentary AmericaOnline discs plagued the world’s landfills, a drug called Enbrel hit the market. It was the first of a new category of medicine called biologics and they represented the beginning of a sea change in the treatment of autoimmune illnesses.

You see, instead of using chemicals to curtail the symptoms, these new biologic drugs altered and/or blocked parts of the body’s own immune system from chowing down on the patient’s good parts. Interleukin 1, interleukin 6, TNF, T-cells, B-cells – all the different parts of the immune system that were thought to cause RA eventually had a biological drug that acted on that specific part.

It was a game-changer, and now, paired with a drug called methotrexate, it is the conventional treatment method for new RA patients. This is most likely where you will start.

Managing medication side effects

Let’s talk side effects – I prefer mashed potatoes myself, although you can’t discount a good creamed corn. Then again – errrr, sorry, I thought we were talking about side DISHES. Side effects, yes, that’s a whole different ball of wax.

It’s true that many RA meds come with a list of side effects longer than your arm. If you actually fold out the little paper that comes with the injection, it goes from the size of a matchbook to the size of a small tablecloth, and three-quarters of it list all the horrible things that can maybe/possibly/sorta happen to you if you take that medicine. Hairy elbows, rash, itchy earlobes, death, back zits, pinky toe stink, superdeath – the list goes on and on, and some of them are downright terrifying, but...

Well, look, I can’t medically claim that you won’t experience any side effects and I’d never even try. But, more than likely, you will experience a handful of common things that are not life-threatening. Itch at the injection/infusion site, rash, slight fever, nausea, and the like. It’s a trade-off, though, and that’s a phrase you will be hearing a lot from now on.

Diet, nutrition, and RA

Diet – this is a big one. From the millisecond you tell your friends and family you have RA, one or more of them will inevitably tell you about the benefits of diet – paleo, autoimmune protocol diet, no wheat, no gluten, no salt, no sugar, no artificial flavors, no artificial coloring, no meat, no eggs, no carbs, no calories, and - finally - no food at all.

Deciding what works best for you

There is no shortage of diets out there that will claim to cure all your ills – baldness, gout, depression, a few extra pounds, cancer, and of course, RA.

Here’s the thing: there hasn’t been any study to date that has proved conclusively that diet can affect RA in any significant number of cases. That’s not to say that it doesn’t help, no. But what it does say is that you have to decide for yourself if it helps you, and only you. I’ve tried just about every single diet out there, and while there were a few times that I thought it might be helping, after a few months, things went back to normal and I got tired of using lettuce as bread for sandwiches.

You have to decide what you’re willing to give up in order to try something that may or may not affect your illness. Just keep in mind that for the first few weeks, the placebo effect might be responsible for your change in wellbeing and that, unlike diets, has been proven in studies to be something that really can affect your wellbeing – a positive mindset. Again, it’s a trade-off.

Use of assistive devices

Finally, there are canes, wheelchairs, shower chairs, walkers – the list goes on and on. While your insurance will pay for most of them, let’s be honest – there’s a stigma associated with all of them, and going out in public in a wheelchair is no picnic. Sorry, but that’s the truth. I’ve done it and even if you put aside the feelings of inadequacy you will inevitably experience, the fact is that America simply isn’t built for someone using a wheelchair.

This is a personal decision and something you have to, again, decide what you are willing to trade – less pain for more exposure. I have done both and all I can say is that you can be the most confident person in the world, but walking into a public place with a cane at age 40 is never going to feel great. I mean, unless you are the Monopoly guy.

Accepting a life with RA

Trade-offs. That’s living with RA and something you’re going to have to come to terms with if you want to accept life with a chronic illness. Sorry, I know it’s a bit of tough love, but it’s true.

You will have to make decisions where you trade off a definitely better near-future for a possibly worse far-future. You will have to decide if your quality of life now is worth improving, gambling that ten-years from now you won’t be stricken with cancer that you got from the RA meds you needed now. Do you trade off keeping your job now and possibly dealing with joint damage later in life or do you go on disability immediately? Trade-offs.

I hope this helps to prepare you for what’s to come, it will be hard at times, but you’ll figure out a balance that works for you. How do I know? Because we all do. Talk soon.