Well, in last week’s post, we finally made it to diagnosis…….for the time being. I put it that way because, as I mentioned before, there was another hiccup in that situation a little later down the road. We aren’t there yet, though. Oooooooh! A little foreshadowing. Exciting, right? Yeah, I know. It really isn’t, but let’s have fun with that idea anyhoo.
So, Dr Rhymes With Gong decides to put me on a medication called Aubagio. It had just been approved by the FDA in 2012. So, relatively new, in the world of MS meds. When I was told Aubagio was a once a day pill, I can not tell you the relief I felt. One of my biggest worries, after reading up online (big mistake) about treatments, was that I was going to have to give myself injections. I did NOT want to have to do that. I would rather have a rabid badger shoved down my pants than have to give myself an injection.
Now, don’t get me wrong. I’m not afraid of shots. I never have been. Yes, they are slightly uncomfortable, but they aren’t the end of the world. They honestly have never caused me too much trauma, though. Not even when I was a kid. My mother always loved to tell the story of taking me in to get my first shot. I don’t remember exactly how old I was, but I imagine I was about 2 1/2 to 3 years old at the time. The nurse told my mother to distract my attention from the arm that would get the needle. She did, but as soon as the needle went into my arm my head snapped back to the offended injection site. I did not scream, cry, or start a fuss. I simply looked down at the needle retreating from my arm, looked up at the nurse and gave her an unpleasant grimace. That was it. I believe I still use the same tactic today.
So, no, the shots themselves don’t bother me, but to give myself an injection………Nope. Don’t want to have to do that! Puncturing one’s own skin with a sharp object is something I wish no one ever had to do. Unfortunately, for some, it’s the best defense against a disease that is attacking their body. Thankfully, up to this point, I haven’t had to subject myself to that. I hope it stays that way.
Okay. Back to the Aubagio.
It’s fucking expensive! I’m talking really, fucking expensive. My neurologist knows this, and also knows I’m not made of money. She also, also knows that my insurance would pay for a good chunk of it, but that there would still be quite a bit left over that would fall to me. (I found out later, one months supply would cost $5,500, if paid for flat out.) She also, also, also knows of a group that helps out in these situations. She told me about One to One. This group of wonderful souls, including nurses who are assigned to your case individually, are awesome! They not only will help with payment, if they deem it needed, but they also help with any questions, fears, or wanted information concerning all things MS. I can literally call their number at any time of day, and a nurse will be available to talk. If I call during regular hours, I can talk to the nurse assigned to my case. She already knows my history, so there is no time taken up by explaining where I am in treatment. These people deserve a medal. They have been a great help to me and others. My neurologist was sure that I was a case for them, and that she, ‘Dr Gong’, would contact them on my behalf. I would be hearing from them soon.
Before I could be approved to start the treatment, though, I needed more blood tests. YAY! (Sarcasm again.) More blood tests! I would also need a TB skin test.
Wait…..what? I thought I had MS. What the hell does TB have to do with this, right? Well, turns out Aubagio, as well as many other medications, can have extremely adverse effects if you have a TB infection, so the test is required just to make sure. Okay. Whatever. With all the tests in the past couple of months, at least I know I don’t have a lot of other diseases. The more info, the better, right?
I’m given a pamphlet explaining the drug, instructions to go to a minute clinic to get the TB skin test done, and a two week starter set of Abaugio pills with the instructions not to start taking it until after we receive a negative result for TB, which we should have in just a couple of days. ‘Should have.’ Well, things don’t always go how they should have, but I’m getting a little ahead of myself. We’ll get to that later. First, I want to tell you about the pamphlet explaining the drug I would soon be taking.
Now, I’ve told you how little is known about MS. They call it the invisible disease. Not simply because you often can’t tell someone has it just by looking at them, but because it is so very elusive as well. The ‘experts’ don’t know what causes it, if it’s hereditary, or much of anything else involving why it starts. They do know that it causes the body’s own immune system to break down the myelin, which is the sheath protecting one’s nerves, and causes damage to the underlying nerves. It can cause many different symptoms to show themselves due to the fact that it doesn’t care what nerves it attacks. Some people notice a problem with motor skills first. Some people suffer unusual cognitive memory problems first. For me, the first major attack was the optic nerve in my right eye. That caused the inflamation, blurriness, and pain. It affects everyone differently, though, because it doesn’t give a shit what nerves it attacks. Hence the ‘Multiple’ in the name. Multiple symptoms. Multiple ways it can attack a person. Multiple treatments. Multiple questions spin in one’s head when one finds out one has it. Would you like to know just how much of a mystery it is? Well, in the pamphlet……..here, I’ll just quote directly from it.
I get home and open the small, folded, thin bit of laminated paper that had been given to me. One of the first sentences I see gives me no comfort whatsoever.
“The exact way AUBAGIO works in MS is not known.”
Yup. That is precisely what it says in the brochure. I’m not kidding. I’m looking at it right now to make sure I quoted it perfectly! They are literally telling someone who is already freaked the fuck out that the drug they are about to take is a drug that they don’t even know how, exactly, it works. It just does.
How do you think you would feel if your doctor told you, “Here. Take this for what ails you.”, and when you ask how it works, the doctor says, “I’m not sure myself. It just does.”? Yeah, that’s what I thought. Unfortunately, the simple fact of the situation is that they don’t know how, ‘exactly’, most of the treatments work on MS. They simply know they get results. It’s one of the reasons many people opt out of taking medication for it. I, myself, despite the possibility of side effects, put my hope in science. It has a pretty good track record.
Speaking of the side effects, we’ll refer back to the pamphlet.
“Aubagio may cause serious side effects, including: reduced white blood cell count-this may cause you to have more infections; numbness or tingling in your hands or feet that is different from your MS symptoms; serious skin problems; breathing problems (new or worsening); and high blood pressure.”
“The most common side effects when taking AUBAGIO include: headache; diarrhea; nausea; hair thinning or loss; and abnormal liver test results. These are not all the side effects of AUBAGIO. Tell your healthcare provider about any side effect that bothers you.”
Tell my healthcare provider about any side effects that bother me?????? Any or all of those would bother me! I’ve already got high blood pressure, so, no biggie there. And let’s just look back at the first paragraph. My confusion is raised by this part in particular. “Numbness or tingling in your hands or feet that is different from your MS symptoms;” Different in what friggin’ way? Tingling and numbness is……well…….tingling and numbness! How am I supposed to tell if it’s the disease or the drug that is the cause? I still don’t have an answer to that one. More mystery. This is how confusing and frightening walking into this new world is for someone who is already reeling from the news of having the disease. The more I read, the more Lewis Black’s voice kept popping into my head, screaming, “SON OF A BITCH!”. (Look him up if you’ve never heard him scream that. You’ll understand better after experiencing the zeal in which he puts behind it. It’s all too fitting and extremely entertaining.)
My mind is spinning, reading about this drug I was probably going to start taking soon. Still, I did my best not to show my fear. I knew Jen was already scared as hell at the idea of me going on this medication, and I didn’t want to feed that fear. I hid how frightened I was from Jen and everyone else I cared about. Yes, probably the wrong thing to do. That’s just how I work, though. It’s one of my biggest flaws. I internalize things. As you will learn, if you continue to read my ramblings, I’m working on that. This blog is part of that process.
Speaking of continuing reading, I think I’ve bent your ear (or more precisely, tired your eyes) for long enough in this installment. We’ll head to the minute clinic at the beginning of next week’s babblings.
Until then, when you feel down, look to those who care about you. When you do, those who really care make themselves known. I’ll keep working on that, too! See you next Tuesday!