08 June 2009

Shotgun Updates...

Married to the Sea

Okay, so I am shitty at updates. That is completely obvious to anyone who actually looks at this blog from time to time. So here is another set of not-sequitir updates:

We have been in the new house now for three months. It has been great- our tomatoes are heavy with newly budding fruit and we are already nibbling on the zucchini, chard and kale. The hardwood floors running throughout the house have ruined me for any other floor options in the future. Bucky and Gypsy have become spoiled with all of the windows they can look out, and Buck has become so bold as to venture out into the backyard with me on occasion.

Moving in with Heather has made our relationship so much stronger and profound. Living with her is easy and she has been such an amazing support. I am pretty sure she likes living with me, too.



(Bad time right now to be listening to Dolly Parton's original version of "I Will Always Love You").

Where to start?

Well, where I left off, I had stepped on a piece of glass. That resulted in a tetanus shot and off the methotrexate for three weeks (during the move). When I resumed the methotrexate, it was at the higher dosage. It didn't work. Well... it DID work, but the side effects were so bad that it was a choice between being in pain or being so sick I couldn't move. Pick one.

Also, my body just can't handle the methotrexate at that high of a dosage. I have had two "elevated transaminases" liver panels the past three months. It's just a fancy way of saying my liver is saying "fuck you" to the whole methotrexate thing. So while my liver is acting all petulant, I go off the methrotrexate. In the past three months- between the tetanus shot and the liver panels- I have been off it more than I have been on it.

I told Heather in passing a while back that this disease has grabbed me by the scruff of my DNA, and now that it knows that I am on to it, the AS has turned into a rabid pit bull against my joints, tendons, ligaments, muscles, etc. The strange thing, though, is that I am coming closer to acceptance.

The moments of levity with this process have passed by my way more and more frequently these days. For example, I have been having problems with my hands- especially my left hand (that sucks, I'm left handed). Sometimes it gets so stiff and painful that I feel like my hand has turned into a claw- just a thumb and four fingers unable to work independently. Because of this, I occasionally wear an "arthritis glove" on my left hand. Heather and I call it my claw panty.

This one day while I was at work, I had my claw panty on and this woman walks up to my desk, points to my hand and says: "Oh! Do you have arthritis?"

I was totally floored, just because most people thought I was going for the most uncool, flesh-colored 80s Madonna glove ever imagined. I told her that I did indeed have arthritis in my hands and she exclaims: "so do I" and whips out the most gnarled scary looking right hand claw I have ever seen. My left hand and it's claw panty ran yelping behind my back, for fear of what could be. All I could think is "thank you, God! At least mine is not aesthetic yet!"

Shallow, I know, but it did make me realize that I still have function in my hands, even if it hurts like a bitch at points.

Having an "invisible disability," though, does have it's drawbacks.

Invisible disability is a real term. It is to describe the millions of us out there that have a condition- mental or physical- that impairs our ability to complete common, everyday tasks. These conditions, however, cannot usually be detected by the naked eye. It is true that when the average person hears the term "disabled," they automatically think of someone in a wheelchair, or a walker.

My friend, Kellea, has a professor at the University of Wisconsin who has extensively studied invisible disabilities and the correlation between disclosing them and a gay or lesbian having to come out of the closet. Being a lesbian who has had to come out of the homosexual closet over and over again, I can completely agree that it is a very similar experience. I have to admit, however, that coming out as a lesbian has been a whole lot easier than coming out as someone with an invisible disability.

At least with coming out as a lesbian, you can squash the skepticism pretty quickly by making out with your girlfriend in public, inviting her to the company barbecue, moving in with her, etc. When you come out as disabled, but don't walk with one leg dragging behind you, or an arm missing or some other aesthetic indicator of your condition you are immediately doubted.

It is amazing how insensitive and unthinking people can be. Here are some of my favorites that I have heard in the past few months when people find out that I am undergoing "treatment" for a "disability:"

"You aren't disabled, you look fine."

"You don't have arthritis, you're too young."

"You don't take chemotherapy, you don't have cancer."

"If you are on chemo, why do you still have hair?"

"It is just passing, you'll grow out of it."


"You don't have arthritis, you're just saying that for attention."


Dude, if I wanted attention, I would tattoo a swastika to my forehead (sorry Charlie Manson).

So now, when people ask me WHY (stupid way to start this question) I have arthritis, I have started telling them this: "Well, all of the retirement villages in Florida are seeing an explosion of STDs, so I figured if the octogenarians are stealing my generation's diseases, I can steal theirs."

Most of the time, they don't get it.

I am learning in my own way to deal with the multitude of limitations the progression of this condition has impressed upon me- not just social, but also physical. I am pissed I can't open the condiment jar as much anymore. My pride gets a load of buck shot to the ass every time I can't open a twist off cap on a soda. When my co-workers (out of good nature, I am sure) make fun of the way I walk when I get up from sitting at my desk too long, I try to take it in stride. I have an amazing network of friends who have been more than supportive in the past year since this started.

The good news is that after another battery of tests, I will be starting on Humira (the supposed wonder drug) in the next week or two. Nothing is slowing the disease down right now, and the Humira should, in theory, stop it in it's tracks. I have filled out all the right paper work and got the price down from $3000 a month to $5 a month. I do have to thank my insurance and Abbott Pharmaceuticals for working with me and realizing that I am in desperate need of Humira.

My Ankylosing Spondylitis is just like the person it has decided shack up with- driven and determined to succeed. As of right now, Humira (and the other two drugs in it's class) is the end of the line for me. There is really nothing better out on the market. I have complete faith that the Humira will give me the reprieve I so despirately desire.

It is not without it's side effects- tuberculosis being the most common- but I have finally come to a point of acceptance that I have got a nasty disease that will do nasty things to me unless harsh measures are taken. Unfortunately, those harsh measures are not without their own consequences.

This is the hand of cards I was dealt. Ante up.

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