02 July 2009

...and THAT'S What $800 Looks Like on the Wall...

Today was my first shot of Humira... but I will get to that in a minute...

First, I want to talk about needles. I was first going to bring this topic up about seven or eight months ago, but I got sidetracked. It is better this way, though, because I have so much more experience with them than I did then. In the past year, I have been exposed to so many different types of injections and blood draws- even acupuncture. I am a human pin cushion. There are the shots that hurt like a red hot sword being plunged into your body and there are the shots that feel like little stings- only to feel like your arm or leg is going to fall off a few hours later. There are the nonexistent pricks from the acupuncture needles that can actually feel good in a way. And of course there are the endless blood samples- with the phlebotomist digging around in the crook of my arm, trying to find the one vein that will produce.

I hate needles. Not in the way that most people hate them, though. I am not afraid of the needle itself. I can watch it pierce my skin with no problem. I hate what the needles bring- the toxins that enter my body through these metal shafts, bringing with them the side effects and aches that compound my already delicate situation.

Today I met my match in needledom. As I mentioned previously, I got my first shot of Humira today. It was administered (with a healthy laugh, which I will talk about in a minute) by the head nurse, Janice, at Dr. Afrasiabi's office. The only problem is this: she was just showing me how to do it- Humira is a self-injected drug. It's not that hard- it comes packaged like an epi-pen. Put it up against my thigh, push the button, needle shoots down, administers the drug, the end.

The only problem is that it was the most painful shot I have ever received. The needle entering the skin was no problem. The drug itself felt like acidy fire oozing its' way through my ample fat layer. I told Heather that she was going to have to sit with me the first few times I do it, because I just don't think I have the courage to do it alone. It only lasted maybe five seconds, but that was the longest five seconds of my life.

The great thing about Humira, though, is that unlike methotrexate, as soon as the shot is over, it doesn't really hurt any more. Also, seven hours later, I haven't shown any signs of side effects. By this point with methotrexate, I am usually sick, sick, sick. Bad news is that I am back on the methotrexate again next week. So every other Tuesday will be the Humira shot from hell and every Thursday will be the "let's all get the flu" methotrexate shot. Everything I have read about Humira, though, says that I should be doing back flips like Mary Lou Retton within a month or so... one can only hope.

The comic relief that came from the day was when Janice was showing us how to uncap the Humira Pen. Now without insurance, each pen costs roughly $800. That is not a hyperbole, look it up. So she takes off the gray needle cover, and then uncaps the plum top. She has the needle end pointing toward the wall and is talking about how it is dispensed when she starts to put the plum cap back on. A red flag went up in my mind, because in my readings and research on Humira Pens, it always says: "DO NOT REPLACE THE PLUM CAP AFTER REMOVING IT." As the warning flag went up in my mind, the pen engaged and shot $800 worth of Humira all over the examination room wall.

All we could do is laugh. She said thankfully they keep a stock of them (thank God, because I only get sent two a month), and she went and got another one. It was definitely the levity I think we all needed to get through this.

This is new territory for me. I am excited because I have heard almost nothing but good things about Humira. After spinning many plates and jumping through numerous hoops, we got my portion of the copay for Humira down to $5 a month. That is completely reasonable... although I think the people who pay full price would have an apoplectic fit to find out we just sprayed $800 all over the wall this afternoon.

There are many other things to talk about... like our AMAZING trip to Monterey or my runaround with my (soon to be ex) acupuncturist... but I will leave that for another day.

14 June 2009

Backed Against a Wall...

Married to the Sea

(This was today's actual cartoon from Married to the Sea- totally fitting, and I am glad I didn't have to go searching through the archives).

I am in a quandary. I am sick again... again. I have a head cold/sore throat/general ailment... again. I am pretty sure I brought it home from work- tucked away in my day planner. Unfortunately, Heather and I started showing the exact same symptoms within hours of each other. I don't really see it becoming very serious, I find myself in three very different predicaments.

The first predicament is plain and simple- and already stated. I am sick... again. It is getting really old. It seems that monthly now I am coming down with some sort of cold, flu, bronchitis, etc. It is never bad enough (knock on wood) to land me in the emergency, but it has in more than one occasion landed me back at my General Practitioner's, paying the $30 co-pay and then the other $15 for a prescription of antibiotics to clear up whatever the flavor of the month turns out to be. Every time I show more than an hour of clear sniffling or chest congestion , coughing, headache, fever, I am off the methotrexate for at least a week. Diseases- 1, Rachie- 0.

The second predicament is related to the first and puts me in the quandary I feel I am in. My liver panel from last week came back with "elevated levels of transaminase" again. That's the second time in as many weeks, and now the third one in three months. My doctor is showing reserved concern- trying to act like there is nothing to worry about, but never the less bumping my folic acid intake up from two pills to five pills a day. The down side of another bad liver panel (aside from the obvious "hey my liver isn't functioning properly" part), is that he cut my intake of Excedrin in half. I used to take two twice a day. I now I can two a day. Period.

The Excedrin was doing a lot of things for me: it was helping with the overall pain management of the condition, and it was controlling the almost constant headache I usually have. I could have withstood this for another week until I took another liver panel- but me being sick has thrown a real wrench into it. What do I do? Heather and I are trying to control this "cold- or whatever" with homeopathic remedies, but as of right now, my sinuses are packed full, my head wants to explode, my throat is raw and burning with knife of fire slicing down its' tender skin every time I swallow, and my ears feeling like someone poured itching powder deep into them.

In this sort of situation, I would take some Tylenol severe cold and harbor the storm. I haven't had a methotrexate shot in two weeks anyway, so this would be the opportune time to kick the crap out of the the crud that has shacked up in my head. Herein lies the problem: the reason why my doctor wants me off the Excedrin is because of the acetaminophen it contains. Acetaminophen is notoriously hard on your liver...

...the next round of tests he ordered to check my "liver levels" also included a "BUN test." Blood Urea Nitrogen test. Me being the faithful google disciple that I am found out it is to find out how well the kidneys are functioning. I sort of wish my doctor could have been a little more straightforward with me, because of course I am now going to wonder until my next blood test on Wednesday if there is really a cause for serious concern. He is not the kind of doctor to order unnecessary tests. So what now is this about my liver AND my kidneys...

Okay so, the filtration system for my body is having some technical difficulties. Excedrin, Tylenol, etc. only cripple that filtration system even more. What do I do?

My body itself is already feeling the effects of cutting my Excedrin dosage in half. The headache can be contributed to the head cold I have. The leg cramps, on the other hand, cannot. My fucking body hurts. It is bullshit to find myself backed into this corner. Diseases- 2, Rachie- 0.

I am just happy that I have a three day weekend this week so that I can try to kick it without taking any sick time, because I am just this side of useless right now. This brings me to my third predicament.

As I mentioned before, Heather and I started showing signs of this ailment within hours of each other. We have been swapping colds and bugs all winter, spring and now into the summer, however, there has been enough of a delay one way or the other that we can usually care for the other. I have already held a tremendous amount of guilt over the past few months of us living together that when she is sick, I am unable to take care and pamper her the way she deserves because it seems that I am always fighting some fucking health battle of my own. Inevitably, I wind up getting what she has, and the last few days of her recovery are the first few days of my battle with it.

Now, though, she is in the bedroom trying to sleep, just as congested, headachy and in pain as I am, and I feel totally worthless. I have come out to the couch so that she can try to sleep without my tossing and turning. Last night while she sneezed and wheezed and grimaced every time she swallowed, she was still rubbing my feet, legs and back. I am eternally grateful for her genuine concern about my overall condition, it makes me feel so impotent when I cannot take care of her.

Yesterday afternoon, the only solution I could come up with to treat my excruciating leg pains, headache, sore throat and sinus congestion was to take a valium out of cycle. I was hoping I could "sleep it off." I did sleep for about two hours, but when I woke up, I was drugged half out of my mind and still in the same physical state as when I took the damn valium. So poor Heather, sick as I am, had to deal with a moody, drugged, sick and Sick girlfriend. She must be a saint, because I don't think I would be able to put up with me like this.

I will recover. Most likely without any sort of co-pay to my GP and another round of antibiotics. I am trying not to lose the overall good spirits I had when I wrote a few days ago, but I feel like crap and I am shamed at my inability to step up and be the provider I need to be to Heather during the occasional times she is sick like she does for me EVERY SINGLE DAY.


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.

21 February 2009

Catching Up on Things... Non Sequitir Style...

Married To The Sea

Okay so... it's been a while. But it wasn't for a lack of trying. I started a couple of blogs a while back and things just sort of got in the way. So I am just going to have to give you the shotgun version of events from the past three months.

It is said that kindness is shown through your actions rather than your words, and I believe that to be true. For Christmas this year, my love, Heather, got a hold of my friends and family and had everyone chip in so that I could buy a memory foam mattress. Memory foam is approved by the Arthritis Foundation, and I have to say I have noticed a tremendous difference in my back. She was able to pull all of this off not only while she was teaching four classes, but also without me even having an inkling that it was going on.

Her actions were committed out of true kindness, and now she will be able to reap the benefit also. We are moving into a house together next week, and we will be using my new mattress. It feels nice to want to live with someone again. We are both excited about the house we have found and look forward to playing in the dirt and gardening. I am excited that my cats will have many more windows to look out of. They have been staring at the walls of the other apartments around me for the last three years- this should be a visual treat for them...

I was recently accepted back into Chico State to work on my graduate degree in Communication Studies. I have applied for a TA position as well, and I hope that works out also. With the knowledge that I am going back to school on August 24th, I am finagling ways to keep not only my current job, but also my current health benefits while knocking off a significant amount of time I actually spend there...

The AS is sort of at a status quo. I recently had another appointment with Dr. Afrasiabi, and he has upped my dosage of methotrexate. I am struggling with my sudden, nausea inducing revoltion toward needles. I have never really been bothered by needles before, but whenever I think about the 1 1/2" needle going into my haunch every week, it makes me gag a bit...

There are boxes and crap all over my apartment right now, all waiting to be moved and I am sitting here on the computer. I stepped on a piece of glass at Heather's house today and cut the crap out of my heel. It thankfully didn't need stitches, but it still hurts like a mother. (What does "hurts like a mother" mean anyway? Of course, it could be short for mother fucker, but even then, that doesn't even make sense). Heather and I had a ton of errands to run today, so I hobbled through as best as I could, but by the time we made it to the eeee-vil empire of Wal-Mart, I couldn't bear it so I did one of the singularly most embarrassing things in my life: I rode around Wal-Mart in a motorized cart... eating a McDonald's cheeseburger. I was living a little slice of the American Dream right there.

There is a weird frustration that goes along with cutting my heel. Because of all the immunosuppressants I take now, I heal very, very slowly. A paper cut takes like two weeks to heal, so this deep gash in my heel is going to take forever. I have come mostly to terms with a lot of the changes my body has gone through, but I still get frustrated over it. I am going to have to grin and bear it all while trying to get everything packed up for the move...

The medical companies are sending out the goons for me. I haven't been able to keep up with them financially-even with insurance. I will pay them all off eventually, I just wish they could find even a smidge of compassion and patience in the mean time...

...perhaps I can just pop out a litter of eight babies, and then California will just pick up the whole bill...