Falling Off The Face Of The World
So…you’re probably wondering where I’ve been. Where are the books, Dee? Why haven’t you been online? No twitter, no Facebook. In fact, I’ve been on an epic decline starting as far back as late May, but it became a near shutdown since August 23rd. Yup, I know the date. Because, dear friends, that was the first day that my body went completely into revolt.
To explain, I need to back up, just a bit.
Hi, my name is Dee and I have Ehlers-Danlos Syndrome, otherwise known as EDS. In layman’s terms, its a connective tissue disorder that effects the entire body. Skin, muscles, tendons, joints. If can effect the very connections in your brain and the rigidly fitting pieces of your spine. It’s systemic, because what it really comes down to is that people like me don’t make collagen properly. In fact, we screw it up royally and to date, they have no way to really fix it.
EDS occurs in about 1 in 400,000 people, which I suppose makes me fairly special. I showed strong symptoms and was diagnosed at age 13, which apparently makes me more special. Most people present in their twenties or never find out what’s wrong until their forties. In that way, I’m lucky. Once doctors find out what I have, they’re less inclined to call me crazy. Slightly less, anyway.
The other thing that EDS does is open you up for a whole host of uncomfortable side issues. Since I’m a girl, I had the not as exciting opportunity to develop endometriosis at a very young age. Suffice it to say, I’m not so very young any more and both conditions are degenerative.
Which, brings us to this summer and where I’ve been.
I’d like to say I was holed up writing—I know I owe you all several books and i do plan to get them out. Or on a surprise vacation. Or really anything that didn’t involve doctor visits, more medication than I’ve ever had in my life or consist of months of unrelenting pain. But it is what it is. And to be honest, it’s still going on.
What began as yet one more miserable cycle to get through was compounded by multiple cysts, a developed infection and an EDS attack, which I’d been fending off periodically since May. Stress has a way of triggering the EDS so that I have nerve pain along with joint pain and I found myself unable to move hardly any part of myself without a frightening amount of medication. (To me, anyway. I know some folks really can push those meds.) It meant three months of trying to heal.
Trying, being the operative word.
The doctors are sure that I need a hysterectomy, but they’re also sure I need to pay for that kind of thing. I’m uninsured, unlikely to become insured and i just don’t have that kind of cash lying around. Neither do most people, I figure. Who would? There are ways, of course, government programs I can possibly qualify for. Maybe. Anyone who is uninsured and in need of services knows that this is not an easy route. It’s circuitous, has several setbacks and takes a lot of time and energy I just didn’t have yet. My reserves went to my kids, day in and day out. There just wasn’t enough of me to go further.
As most Moms out there know, the world doesn’t stop because you’re sick. The house needs cleaning, the kids need care and food and the bills need paying. So I worked, worked every web job I could get my hands on. Unfortunately, the writing just…dried up. It’s hard to be creative when you’re in a gauzy cloud. The voices just don’t come. But code, code has definitive yes and no answers. I could code and know for sure it was right. And if the pain kept me up at night, at least I had something to do.
It’s taken all these
months, but I’m finally mostly off the meds. I am surfing the government pages to see about MediCal and any other program that might help put yours truly back together again. I still have some bad days. Days when I get so frustrated with the pain I want to throw things. Wish for someone else’s body. Want to curl up in a ball and cry. But I also have days when I know my family loves me, when they help me and surround me with the support I need to get to the next day. And the next. That’s every day, really. They take care of me emotionally, even when they can’t fix me physically.
So, why the long story about what’s wrong? Because one in 400,000 people is still a lot of people. People for whom pain is more than a word—its a daily existence. And the numbers of women suffering with Endometriosis is staggering. But its still not something people are comfortable talking about. When you have it, you get the impression that its impolite to discuss it openly. At best, it’s spoken about in broad numbers and statistics. But I’m more than a statistic. I’m a wife, a mother, a person. I’m broken. But I’m here. And since my condition–expensive and distasteful as it is–refuses to go anywhere, neither will I.
I’ve never hidden anything about my health problems or my life in general. I do believe in privacy, but there are some things about which we should speak. We should share, not whisper at the back of a party or discuss only amongst ourselves. These last couple of years watching the state of women’s health laws be slammed back into the dark ages is the biggest proof of that. So, I’m open about my condition, because there’s just going to be times when I lose the fight and disappear for a while. I don’t like it—in fact, I hate it more than I can tell you—but I promise this.
I’ll keep coming back. I’m not quitting. Not on the writing. Not on this stupid condition that has been getting the better of me the last few months. So if you can bear with me, I’ll do my best to make it up to you.
Many hugs to you all,