28 November 2008

SICK, Sick and sick...


This blog post has been a few weeks in the making, but it definitely feels like it is the right time finally. It has now been over two months since I was diagnosed with AS, and the treatment was actually starting to work. During these past nine weeks, the way I have thought about chronic illness has been radically changed. I obviously have much more empathy for people with auto-immune diseases than I ever did before. I guess it is sort of like what Atticus Finch says to his daughter, Scout, in To Kill a Mockingbird: "You never really understand a person until you consider things from his point of view... Until you climb inside of his skin and walk around in it."

Whenever I heard the term "auto-immune disease" I automatically thought of HIV or AIDS. HIV is a disease that contracted- passed from person to person, so in my own blissful ignorance- or to be completely fair to myself- naivete , I never really considered the millions of people who suffer from other auto-immune diseases. Perhaps it is something I can blame on the media, there just was not a lot of press coverage on lupus while I was growing up. Of course, some of it is just plain old ignorance, though. I honestly had no idea that rheumatoid arthritis, psoriasis and multiple sclerosis were auto-immune diseases. And completely in my defense, can all of you who had even heard of Ankylosing Spondylitis before talking to me or reading this blog please raise their hand and come forward, because I sure had never heard of it before I found out I had it (broken record, I know).

So yeah... I now climb around in the skin of someone who has an auto-immune disease. This diagnosis lead me to a quasi-realization. Just as there are varying shades of gray a black and white photograph, there are varying shades of gray in the definition of sick. There is my personal favorite: SICK. That is when someone says something off-color, or is like a car accident, you just can't help but pay attention to them. For example, your friend tells you a racist joke and you find yourself laughing despite its nature. You say about that friend: "Josh has a SICK sense of humor."

This kind of SICK is more a state of mind than a biological state.

Right now, I am unfortunately experiencing the two other kinds of sick. I am Sick. That is a difficult thing to swallow. I have a chronic illness to which there is no cure. I have a pre-exsisting condition that insurance companies don't want to touch with a ten foot cattle prod. That is Sick with a capital S. It is something that defines part of who you are- just like my being gay or left-handed defines different parts of who I am. It is a THING; it is an ENTITY that resides perpetually within my body. The hardest part is that it isn't something foreign in my body that has made me Sick. It is just the way my chromosomes lined up this lifetime. My very genetic makeup has made me Sick. (I don't think I am in denial anymore).

Right now, I am also sick. There is a corollary effect between my being Sick and sick. I have sinusitis and bronchitis. I got sick because the drugs I am taking to lessen the effects of my being Sick have compromised my immune system. As you have probably deduced, being sick with a lower case "s" is when you get the cold, or a flu or even bronchitis, pink eye, and ear infection, food poisoning. This kind of sick only lasts a few weeks, maybe a month if you are really unlucky.

Because I am sick, I cannot have any methotrexate injections that help my being Sick. The methotrexate, for all its skull and crossbones warnings, is actually really starting to work. I am (was) really starting to feel a million times better. I started to feel better than I knew I could feel.

I am not really sure when I will get another methotrexate injection. It won't be very long from now, because the bronchitis will go away within a few weeks. When I am finished being sick, I can go back to being Sick... and I am okay with that.

23 November 2008

Non Sequitirs...


That is the rut I am stuck in right now.

I have decided that I do not actually have Ankylosing Spondylitis, and it is only a matter of time before my doctor realizes that my test results were mixed up and those CT scan images and X-rays were, um, misread. I can take off the medical ID bracelet, and years from now, I can laugh with a little embarrassment "about that time I thought I had a crippling, debilitating autoimmune disease."

They will let me know about this mix-up any day now...

Proof? I got my new round of blood tests back. My white blood cell count is good, I am not anemic and my liver is fully functioning.

I guess all that really means is that the methotrexate hasn't become a toxic substance to me.

Raynaud's Phenomenon. Heard of it? Neither had I. Sounds like it could be something that occurs when a star supernovas... or maybe it is something spectacular that happens during the Tour de France.


It is pretty much cold feet... and cold hands. I could get into a huge scientific explanation, but I'll just say it is a problem with circulation- it is seen a lot in people with autoimmune diseases- like arthritis. So I have cadaver hands and feet... oh and the tip of my nose. Don't ask, it's just ice cold most of the time...

I have been on methotrexate for almost a month and a half now. I spoke briefly with Afrasiabi on Thursday, and he said that right now would be the time that I would start to see the drugs working. Um... okay. I am not as stiff. Does that count? My legs still feel like I have been beaten. Is that a problem?

He mentioned Enbrel and Humira again. I mentioned my health insurance not covering it again. He mentioned they would really be helpful. I DIDN'T mention that I couldn't afford another $1200 a month out of pocket. I DID mention the sulfasalazine he wants to add to the regimen (because it is A LOT cheaper). He mentioned that we would talk about it during my next full check-up. I mentioned that'd be nice...

Turns out that sore throats are now a BIG DEAL. I told Janice, the head nurse, I had a sore throat, and that resulted in a full check-up- ears, nose, throat, temperature- before I got my weekly needle to the butt. Nothing exceptional seen to be construed as the beginning of sickness, HOWEVER...

What is the normal body temperature of a human?

What was my temperature when it was taken on Thursday?

Doesn't that mean that I am just about dead?

None of this really matters, though, because I don't actually have anything wrong with me...

Someday (soon, I hope) I will finally move to acceptance. Until then, move along folks, nothing to see here.

16 November 2008

Now With More Preservatives!

It's been a while... which doesn't mean that everything has calmed down- it just means that I have been too busy (lazy), to sit down and report. There are a few things to report...

First, it seems, that there was a double failure in the process of not only filling my prescription, but also in the administration of the methotrexate. Walgreen's had accidentally filled my prescription with "preservative free" methotrexate, and the nurses at my doctor's office didn't pick up on it. Preservative free methotrexate is a one time use only; after it has been exposed to air, it starts to go bad. As I just mentioned, the nurses didn't catch that little detail, so I had two more shots with that vial of methotrexate. In essence, I was having a spoiled cytotoxin injected into my butt.

Then, to add insult to injury (quite literally), the nurses were not using a long enough needle to inject it properly. It is supposed to be an intramuscular injection, but the SPOILED methotrexate was being injected subcutaneously- which is sort of okay, but it is harder for the body to absorb. That might actually be a blessing in disguise, because if rancid methotrexate was being injected properly into my gluteus maximus, I can only imagine that it would've made me a lot more sick than I was.

These two things, though, do explain my curious reaction that occurred almost immediately after the injection. About thirty seconds after the injection, it feels like someone had just reared back and kicked me in the ass. It would throb like nothing else, and then after about a half-hour the leg supporting whichever cheek was injected would cramp up worse than I could've imagined. The nurses were concerned about this reaction, because they couldn't recall whether their other methotrexate patients had the same reaction. It never occurred to them to check to see if there was something wrong with the methotrexate. It also never occurred to them that the needle they were using wasn't piercing my considerable (yet hidden) layer of fat on my backside...

...Long story short...

Thank heavens for the head nurse at Dr. Afrasiabi's office. She has assumed that the nurses she oversees would know what "preservative free" means, or what size needle to use. It just happened that when I went in for what was to be my fourth shot, she was the only one available to give me my injection. It was also a coincidence that it was the visit where I had my prescription refilled- and Walgreen's once again filled it with preservative free methotrexate.

Immediately, the head nurse, Janice, noticed that it was the wrong methotrexate. I told her that was the same stuff her office had been using for the better part of the last month. I was actually pretty surprised, because she was really pissed. It was then that she revealed that they were using the wrong length for the needle. She said she would call Walgreen's immediately, and then re-train her nurses on what the difference between an intramuscular and subcutaneous injections are.

That injection went well. It didn't really hurt and there were very little side effects. By the time I made it home, there was a message on my answering machine from Walgreen's letting me know my prescription was ready for pick-up.

I have had two injections since then- with a longer needle containing "methotrexate- containing preservatives." No more pain after the injection, and very little side effects. Janice has decided that she will give me the injection from now on. I guess probably because if I really wanted to, I could've screamed bloody murder both on the part of her nurses' incompetence and the negligence on Walgreen's part.

The thing is, and I guess I could ask, or at least google it, is what exactly is a immunosuppressant containing hydrochloric acid to stabilize it using to preserve it? I wonder if it is the same stuff that Hostess uses to preserve Twinkies. I mean those things last forever.

It is sort of working, I am not as stiff, but then again, I am not ready for the Ironman triathlon in Hawaii quite yet...