AS sucks ass. You will hear this a lot from me.

I mentioned before that I have Ankylosing Spondylitis, and I would discuss that here from time to time. I want those who have it to read my blog and say, "Hey! She's got that too! I'm not crazy!"; my hope is that they won't feel so alone. I want people who suspect they have it to learn and advocate for themselves, and if I can educate and empower them, so much the better. I want people who don't have it to learn as well, and to be able to take some of that learning into their relationships, because chances are at some point, someone they love will be diagnosed with an autoimmune disorder.

I will eventually have several pages on Ankylosing Spondylitis. I will attempt to answer what AS is, how it feels, how it affects relationships, how it's treated, and hopefully, how to live with it. And by that, I don't mean just to tolerate it, but how to embrace it as well. I want to learn the lesson it's trying to teach me and hope that it takes me, and those along with me, to a better place.

Not buying the wisdom-of-the-body, patient, accepting Oprah shit?

Yeah, me neither. Don't get me wrong; I love Oprah, and if she ever decides to do a show on AS, I will more than happily go to Chicago per her request, sit on her couch, and pour my little heart out. She can even trot out my handsome spouse and cute, intelligent offspring to show how normal I really am and that AS is not the end of the world. But one thing I will not do is sugarcoat it. I promised honesty, here it is.

AS sucks ass. I keep thanking the Powers That Be for not giving me cancer since that's always the worst it could get and hey, at least I don't have cancer, right? Though come to think of it, one of the few available drugs to treat AS also causes cancer. You saw that correctly: CAUSES cancer. But I take my Humira shot every 2 weeks, because statistically speaking, it's more likely that my AS will rapidly progress to unbearable levels if I don't take the meds than me getting cancer because I take the meds.

I see a rheumatologist for the Humira; a pain specialist for pain meds to control the pain and fatigue; a physical therapist who gave me exercises to do at home that are supposed to help alleviate pain and prevent muscle wasting; a therapist to discuss the loss issues that come with a lifelong, progressive disease (and also to pronouce me mentally healthy and not a drug addict to my pain doc); an ophthamologist for the iritis flares that come with AS; a gastroenterologist for the gut inflammation caused by AS; and then my GP who helps me with my other conditions, like hypothyroidism and hypertension. Even with this bright team of medical specialists, the pain never really goes all the way away, nor does the fatigue. It's better though. A couple of months ago, I took my daughter to the mall and shopped all day long. We walked the whole mall, then went to Target afterwards, plus the Vitamin Shoppe (I also take Omega 3 to help with the inflammation); we were gone for about 8 hours. I ended the day with my lower back spasming a bit and my feet feeling like the bones were rubbing together. I was in bed with debilitating fatigue the next 3 days, but I had that 1 day of freedom and it was bliss. Prior to that, before things got so bad and I didn't have a proper diagnosis or medication, that would have been impossible. I would've been lucky to make it from the parking lot to even one store inside the mall. So it's days like that I live for. I worry though-what happens when I finally get another job? Will I make it? Am I being unrealistic? Should I just try to get disability, like the therapist and pain doc suggested?

It is hard on everyone around me. My husband has to do way more than his share; he used to do pretty much everything before I started treatment! My daughter thought I was lazy or didn't want to do the things I used to do, which was really painful for me, but what else could she think? I used to tell her I would take her places or do things and then I would have to cancel at the last minute if I had an episode of fatigue/pain, which I did more often than not. My dad used to make promises to me he could never keep due to his alcoholism, so I knew how she felt and it killed me. Killian will never know the mom Shelby knew when she was little-the mom who would turn on the stereo and dance with her or jump on the trampoline or make dinners. I am able to do a lot more now, although there are established things I cannot do, like mopping, cooking, heavy lifting, giving Killian a bath. Danny has to do those things, along with the stuff he already did, like mowing the yard. There are also times I overextend myself and have to ask for last minute help, like a few days ago when I was cleaning the kitchen. I was scrubbing down the last cabinet when both my hands started cramping up and spasming so bad I could not hold the Clorox wipe, so Danny saved me once again. If I am grateful for anything, it's my husband and family.

This is on my mind today for a couple of reasons. The fatigue that comes with AS is unlike any other...it's like having the flu, muscles exhausted, mind in a fog, so tired even though sleep is elusive. If the pain that accompanies it is particularly bad, then my mood can go pretty sour pretty quick. My neck will go so stiff I can't turn it, muscles throughout my back and ribs will spasm uncontrollably, arthritic pain in the feet and hands and lower back, like bones rubbing together or displaced. Sometimes you can hear them crackle! Sciatica comes along too. All this, coupled with my natural introvertedness, has made for a pretty non-existent social life (both of us not working doesn't help-even simple things like movies and eating out are off the menu now, though hopefully they'll return soon because we'll be working!). My friends have been remarkably understanding and tolerant, and don't take it personally when I have to flake out last minute. They remember when I wasn't a flake, I guess. I miss them though. I have a few friends here in town that I've known forever, and some I met online at HMC (for fans of Joss Whedon enterprises) and subsequently at Buffy cons. I have not been there for people who were always there for me and it's killing me! I want circumstances to change-maybe the people I love could just move here, dammit! Or the AS could go away, like magic. I'll find a solution somewhere, it's just troubling me a lot tonight. It didn't help that I had to flake out on an new old friend. I actually got invited somewhere and had planned to go, but like a dumbass, I overdid it this morning. Killian woke up in a puddle of pee, and Danny was sleeping so soundly, I didn't want to interrupt his rest. I was feeling pretty good, so I thought "meh, I'll give Killian his bath. Let Danny rest, he deserves it." So bathe the boy I did, and now I can't bend over, and the sciatica is torturing my left leg and foot. This too shall pass. And my friend was understanding. I just hate being Flaky Woman. And I want to reconnect with people. Time in my world does not match real time...I got in touch with an old friend back in the fall, met up in January, and I keep thinking we should get together again, because honestly, it was like we never lost touch! Now I hear she's moving, and I think, "but I just found her", before realizing this is June and most normal people would think I didn't intend to see them again. I'll figure it out eventually though.

So there's your introduction to AS, and by AS, I mean Ankylosing Spondylitis. My daughter pointed out that people also use the acronym 'AS' for Asperger's Syndrome, which she has and I will discuss in the future. But I will be sure to differentiate between the two. Happy Sunday-I will make you a deal. Try to reconnect with someone, anyone, that you have been thinking about lately but haven't called for whatever reason. I will do the same. Deal?