It’s been a while since I’ve posted anything, I know. I’d like to say it’s because life has been uneventful, but as I sit here this evening I am forced to realize that that simply isn’t true. The truth is that I’ve been on auto-pilot, getting through the days and weeks and doing the things that I need to do, while managing not to think about things any more than necessary. Not my usual style, but perhaps my overworked brain needed a break.
Tonight, though, for whatever reason, I’ve hit the wall when it comes to avoidance. I’m not sure what it was about today – though I will say it was a generally crappy day – but whatever it was, I’m facing facts.
I will deal with this. I will be strong and I will be mature and reasonable and non-melodramatic and I will do what I need to do to get through it and take care of myself. But first, I need to be a whiny, angry, scared child for a little bit. I need to be angry and scared and sad and I need to throw myself (metaphorically speaking!) on the floor and kick and scream and shout that it’s not fair!
Here’s the deal. About twelve years ago, my mother was diagnosed with rheumatoid arthritis. At the time, I knew nothing about the disease. I’ve learned a lot about it since then, of course. But at the time, I (like many people) thought it was a simple matter of the joints wearing down and wearing out, just something that happens with age. No big deal, right?
In a very few short years, Mom went from normal, healthy, just having a few problems with her joints…to completely disabled. When she moved here to West Virginia about five years ago, she was wheelchair-bound. Today, she is able to walk very short distances (six to ten feet) with a walker, but that’s it. She can do little for herself. When Mom was in her forties, she was still getting carded to buy beer (back when the laws weren’t so stringently enforced and being carded meant something about how you looked). But by the time she turned 55, she looked 70. It happened fast.
Now, a little bit about me. Five years ago, I was about 85 pounds overweight, and I had never in my life felt healthy or strong. I had always thought of my body as defective, poorly assembled, just not capable of very much. That was okay, because I’d always relied upon my mind as my strength. But I didn’t think much of myself, physically. Then, through a series of events (which you probably know about if you’ve ever read this blog before) I started eating healthier, exercising, and lost quite a bit of weight. More importantly, I experienced that “a-ha” moment that so many of the Biggest Loser contestants go through – the moment when “I can’t” turns to “Holy shit, I just did!” and you realize that all the limitations you’ve always had are self-imposed. That you are capable of just about anything you decide to do. That you can. And at that moment, I started looked at my body differently. I started seeing it as strong, as capable, as virtually limitless in its abilities. I started liking myself, in a physical sense. I never again approached a physical challenge as something I didn’t think I could do. I just assumed I could, if I practiced it enough and developed the necessary skills. It’s been a great five years.
But. (There’s always a “but”, isn’t there?) Even during those five years, there’s always been that little voice in the back of my head, wondering how long it would last. Because one of the first things you learn when you research rheumatoid arthritis is that it’s an autoimmune disease. The second thing is that it’s hereditary. But I could have told you that – my mom has it, two of my sisters have it, one of my sisters also has lupus…yada yada, ad nauseum. The end result being that little voice in my head, asking “What are you going to get?” Because what are the odds that I, alone of my mother’s four daughters, was going to be the one to dodge that autoimmune bullet?
Slim to none, as it turns out, and Slim’s out of town. Last year, my doctor diagnosed me with psoriasis, so (of course) I did some research, and hey, cool! It turns out psoriasis is an autoimmune disorder also! Whoo-hoo! I can live with psoriasis. Compared to RA, it’s a walk in the freakin’ park. If I’ve got to have an autoimmune disorder, that is so the one I would choose! All right and tight, yes?
No. This year, I started having problems with my fingers…and my hips…and my knees. Well, okay. I’m still a little overweight. I work out a lot. I’m a mom, and I have a full-time job. And let’s face it, I’m not getting any younger. So it’s all to be expected, right? Not a disease, just…you know, normal wear and tear, right?
To quote the great Jillian Michaels, “I don’t think so, Mo.” The psoriasis got worse, and I did more research. Hmm. Turns out there’s a form of arthritis associated with psoriasis, too. Well, crap. That pretty much sucks. But hey, at least it’s not RA, right? I don’t have to lie awake at night visualizing myself following the path Mom’s on. I can deal with this. Right?
Or…maybe…not. Two weeks ago, after an intense week of furniture-moving at work, I noticed that my left knee felt bruised. It didn’t really hurt to use it, not noticeably, but when I touched it, it was sore. And…hmm…hot. And – holy crap, it was red – but only over the joint. Only over that…that little…was that a knot?
No. Technically speaking, it’s a nodule. And guess what? Nodules are not associated with psoriatic arthritis. They are almost exclusively associated with…RA. And the knee is not the only place I have a nodule. I’ve been trying to pretend that my pinkie fingers are only curved because of the typing…and that little knot on the right one – you know, the place I had so much pain and swelling and redness earlier this year? – is just, I don’t know, from popping my knuckles too much or something. And the pain in my neck…well, you know, I probably need a new pillow or something…and the hips, well, I just need new running shoes…
There comes a time, friends, when even the most stubbornly oblivious of us have to open our eyes and look around, blinking in the harsh light of reality. Denial can only keep you sane for so long before it’s time to face the truth and deal with it like a grownup. Yes, I had an arthritis panel done a month or so ago, and it was negative. But guess what? Sometimes Mom’s still turn up negative. They don’t tell you that on the arthritis websites.
I am so scared. I don’t want to end up like Mom. I’m 37 years old. I have two kids, one of whom is only 9. There is still so much I want to do, so many things I have left to accomplish. I. Refuse. To. Be. Disabled. Not now, not ever. It is not in my plan!
I’m scared because I want to live…but I don’t want to live that way. And if I have to live that way – will I stop wanting to live at all? I want to have 60 more years! But I don’t want to have 60 more years of pain and dependency and immobility! I want 60 more years of life and joy and laughter and I want to be strong, damn it! I’ve worked so hard to get there…and it’s just not fair that it can be taken away by something that I can’t control! Something I didn’t bring on myself by being stupid or not taking care of myself, just some random combination of cells, some stupid gene. I didn’t earn this. It just happened. Does that seem fair? Yes, I do keep reminding myself how much worse it could be, and that I should be thankful it’s just RA and not cancer, or something equally terminal and horrible. The thing is, that doesn’t actually make me feel much better. I definitely realize it could be worse and I’m grateful it’s not – but honestly, this feels plenty bad enough. I think the “it could be worse” thing probably works better when you’re saying it to someone, not saying it about yourself. I know it intellectually, but emotionally, somehow, it lacks impact.
And there’s this: what do I do when I can’t use my hands? I’m a writer, damn it. I’m only just spreading my creative wings, there…I’m only just scratching the surface of what I want to do in that respect. I’m just getting started! Have I waited too long? Am I going to be hamstrung by physical infirmity just as I’m finally getting the mental and emotional balls to try?
Yes, I know there are other ways to write. I know there are ways to work around infirmity. And I know that if caught early enough, remission is possible and infirmity can be at least delayed, if not completely prevented. I know all this, in the calm, reasonable, intelligent part of my brain. But right now, that part’s out to lunch and the angry, scared part is in the driver’s seat, cackling with glee as it joyrides me all over town at breakneck speed.
I don’t want this to be true. I can’t see any way it could possibly not be true, but I don’t want it to be. So I’ve avoided going to the doctor, telling myself it isn’t RA, I’m just being panicky, it’s something else…so that I don’t have to face someone telling me for certain that it is RA. I can’t do that anymore. I know this. I just need a little time to kick and scream before I accept it and deal. I am not one who cries much, and never, ever in front of anyone, but tonight, I cried in front of my husband. Do you know how many times, in 15 years of marriage, I have done that? Maybe two…possibly three. And one of them, I was in labor. I need some time to be melodramatic and bemoan my fate before I woman-up and act my age. One night ought to just about do it.
The thing is…I know that I can delay the disability. The picture I have in my head of what Mom is like now doesn’t have to be me…right away. But eventually? That’s what’s in store. And in the meantime there’s the hell of trying to find a medication regimen that will control the progression without making me horribly sick and causing a series of side effects that will make me pray those 60 years turn out to be 6. Putting all kinds of chemicals into a body that I have been striving to cleanse and rid of all the toxic shit I put into it for the first 30 years! GAHH!
Right now, I’m cleaning up my diet even more. I’m getting rid of so many things, because even if I can’t control this completely with diet, I know I can improve it. I know this. So goodbye sugar, and artificial sweeteners. Goodbye gluten, goodbye other things. Hello, salmon! (I hate salmon. I really do. But by God, I’m going to learn to love it.) Hello, spinach and broccoli and strawberries and kiwi and nuts, lots of lovely nuts. (Most of which I eat anyway, and none of which I have a problem with. I will not, under any circumstances whatsoever, eat Brussels sprouts, however. Unless, you know, I have to. Okay, fine. Hello – ugh! – Brussels sprouts!) I’m adding vitamin therapy, and I’m going to find a rheumatologist who’s willing to try antibiotic therapy before we start with horrid crap like methotrexate and the like. I will do these things. I do have a plan.
Right after I finish kicking and screaming. Thanks for listening, I feel better already.