You’ve all seen it. The Enbrel commercial. You know the one, where Phil trots merrily over miles of manicured golf course without a care in the world thanks to Enbrel all but curing him of his Psoriatic Arthritis! Take it from me; one wrong step over something as minor as an anthill is going to have you wanting to wrap that nine iron around ‘ol Phil’s head quicker than Tiger’s wife when she busted out his window to ‘save him’ that Thanksgiving day.
On one hand, seeing a celebrity come forward with a like-minded affliction fills us sufferers with hope. Maybe now someone in the funding department will take notice of what we go through. Maybe now real money will go into research! But, more than likely what will happen now is our peers will look at us and say (or think) ‘If Phil Mickelson can do it, why can’t you?!’
If only it were that easy.
It looks great on those commercials. Happy smiling people golfing, cooking big elaborate meals, building doll houses and playground equipment and planting all types of flora around their multi-million dollar homes. But if we’ve learned one thing from watching Gremlins, it’s that looks can be deceiving. Let me see if I can make this a bit more realistic…
First of all; Enbrel isn’t going to work on everyone. I, personally, had great results with Enbrel for about two years. For me, that’s one hell of a run! For two years I almost felt normal. I didn’t have a full on remission, but I was able to get through most days without sobbing. I’ll take it! The truth is; no one medication hits everyone the same way. I wish it did!! What works for me may be worthless to Susan. Or, what works for Dave might give me an allergic reaction. I have one friend in an online support group I belong to that can’t take anything with mouse proteins in it. You’d be surprised how many of these meds do- AND she gets the nasty mental side effect of Presnisone, so she’s pretty much in pain 24/7. Oh, and did I mention she’s also trying to raise two boys with some sort of normalcy? What this means is that she deserves an Oscar. The amount of acting she achieves daily, with a smile on her face, is newsworthy. That is more along the lines of what’s real to most of us with RA- not those happy, smiling people.
Don’t get me wrong, most of us are happy, we’ve just had to find a new kind of happy. For those of us with moderate to severe RA (or one of a zillion autoimmune diseases like it), building much of anything isn’t going to happen anymore. In fact, some days building a sandwich isn’t going to happen.
What those commercials don’t show you is what happens after the curtain comes down.
Today, I woke up at 7 to get my grand ready for school. I was immediately thankful that she dresses herself and does her own hair (she’s 9), because my hands were the size of canned hams. I had a splitting headache from sleeping in one position- after I was finally able to fall asleep that is. So, after she got on the bus, I laid back down. I was back up an hour and a half later because my mom was stopping over. She asked me two weeks ago to make a spring flower arrangement for in my grandparents grave, but after spending a large portion of last week in the hospital, I just forgot. She was stopping to pick that and a few other things up… so I needed to build it. Luckily, by using my wrists to push the wire cutters against the table, I was able to cut the stems. I was also able to push the wire into the foam form by using both hands, enabling me to get it done. It bothers my mom to see me in a lot of pain and not be able to take it away, so I try to shield her from that. Since my left foot is about three times it’s normal size right now, and there’s no way to walk on it without it feeling like it’s popping apart, that meant me sitting the whole time she was here. I had to pee. And by the time she left, I REALLY had to pee. I’m on Lasix for the swelling, and Lasix waits for no man. Lol! Guess who didn’t quite make it. At least I was home alone, I didn’t have to deal with uber embarrassment on top of it. Now I’m looking at the clock. The kid will be home in an hour, and she’s having a friend ride home and stay all night tonight. Do I feel like having another child here today? Nope. Not even a little bit- but guess what? Life still goes on, and it’s not fair to stop others from having fun just because I’m miserable. So, I’ll do what chronic pain sufferers have been doing since the beginning of time; I’ll hide it.
I’ll let you in on a little secret. If you know/love someone with RA- they are lying to you. Lying right to your face. Looking you straight in the eye and lying their ass off. They are NOT ‘ok’. They are not ‘fine’. If they’ve cancelled plans, they probably don’t really have the flu, and if they’ve come up with some lame ass excuse for you not to come to their house, it’s probably a lie. The truth is more than likely one of two things. Either a) they are so extremely exhausted that they can barely hold their eyes open, or b) the house is trashed and there ain’t shit they can do about it right now. Oh, there is a c) they haven’t showered in three days, they stink, they know they stink, but they can’t raise their arms to shower so it’s gonna have to wait. Lovely, right? Yum! But now you see why you aren’t getting the truth? I’d rather say ‘I think I have the flu’, than ‘I’m sorry, I have swamp ass from not showering for days, I’d love to have you over, but I’ve only been hitting tops and bottoms and I might curl your poker straight hair. ‘
So, tonight I’m going to order pizza. I’m going to rest as much as I can and hope tomorrow is a little better. I’m going to keep my fingers crossed that the kid entertains her guest with very little participation from me. When my Sweets gets home from work, I’ll tell him I’m fine. He’ll know I’m lying, but he won’t call me on it so I can save face. Even though he’s going to be dog tired, he’ll get me a drink when he’s up and he’ll let the pups out- because he knows my secrets and knows that the pain I’m in makes me want to eat a fucking bullet some days, but he also knows I would never.
And the next time we’re watching TV and an Enbrel commercial comes on, he’ll say ‘hey Bill, ya wanna go golfing?’ we’ll both flip ol Phil the bird, and I’ll suggest exactly where he can stick those clubs.