Be careful what you wish for. Especially if you're wishing for a medication that will bring you relief.
Almost six weeks after submitting my Humira prescription for pre-authorization, and my insurance has still not approved it. I've made countless calls to my Rheumatologist, medicaid, and the pharmacy this month. No one seems to be able to tell me when they expect this thing to go through. The paperwork is in order, I've done my part, the doctor has done hers, and after yelling at the pharmacist---the pharmacy appears to be doing their part as well. I'm a month into the shots now with sample SubQ pens generously provided by my Rheumatologist.
And did I mention that my partner accidentally broke this week's pen? I was being difficult and didn't want to do the injection. I had removed both caps and the pen was locked and loaded when she decided that because I was dragging my feet on giving myself the damn shot, she'd put the caps back on. This released the needle and Humira leaked all over the bathroom floor. Fabulous.
Overall, I'm pretty satisfied with the level of pain control the meds are providing. Getting out of bed in the morning is much easier, and I was able to take a walk around the block in sandals without pain. I didn't suddenly break into a choreographed dance number like Cyd Charisse. I've still got limited mobility and endurance. But there are a number of other issues that the Humira poses for me as well.
1) Extreme nausea. It's so bad that I have been chugging pink bismuth by the gallon, sucking on mints, sipping ginger ale day and night. I've never had a strong stomach, but this is level of nausea has been paralyzing. I can't do anything when I am afraid of barfing, I can't even move sometimes. It's the kind of sick stomach and dizziness that I recall from my last trip to Six Flags, the kind of sick where you pray you'll vomit---anything to just feel better for a minute. It's not just the day after the shot either. It's been more than ten days since my last Humira shot and I'm still struggling with the nausea.
2) Extreme fatigue. Some days it's all I can do to take a shower and wash my hair---because my arms feel so heavy I can barely lift my hands to my head. It's taking me almost twice as long to do all the usual daily things like showering, dressing, putting on makeup or drying my hair. Unloading the dishwasher could take me half an hour. It's utterly maddening. Yesterday I got halfway through getting ready to go out and started to cry, just because the process was excruciatingly slow and frustrating.
3) Muscle weakness. I can't seem to lift more than a couple of pounds and have lost most of my hand strength. My legs are wobbly and unsteady when walking up stairs. In the past week, I have had to ask for rides twice simply because I felt too weak to walk through the grocery store on my own or drive my car to the bank. Aside from the time I had the Chickenpox when I was in my twenties, I have never, ever been this weak. It's quite scary for me.
The other side effects---the digestive problems, the dry mouth, cough---all those things I am willing to live with in order to get my disease under control and prevent my body from eating itself alive. I realize that for the rest of my life, I will probably have a near-constant mild/moderate level of pain.
Another visit to the Rheumatologist this week for my six-week blood work and a quick chat. I explain the issues I have been experiencing with the Humira. She actually appears to have heard me this time. "You've been on the medication long enough and these side effects should have subsided by now. I think we should try you on something else...". Enter the Enbrel sample shots. So much for the laidback, twice-monthly Humira shots. It's hardcore weekly injections now. This SubQ pen is much easier for me to use, doesn't appear to be quite as fragile as the other, with a clear window that turns purple when the meds have been properly delivered. And a little burny, with a warm spreading sensation that creeps me out.
Of course there's the terrifying informational insert that comes in the package. If one is even remotely squeamish, or not much of a risk-taker, it makes for a gripping read. Then there's the raging headache that starts an hour after the shot. But I am relieved that it doesn't make me feel like I've been hit by a truck. So far the fatigue is manageable. Okay then, I may be able to get on board with the Enbrel. The morning after that first shot, I woke up and my feet and ankles were swollen like a matching pair of fat mini-dachshunds. I call the Rheumy again and she asks me if I ate anything salty. "Uh, this is not normal for me, regardless of what I've eaten". She tells me that while it's an unusual complaint, because my breathing is normal and I have no other symptoms, she's not worried. I should continue to take the shots. And she's right---the swelling vanishes after a day or so.
Of course all of this requires an entirely new round of paperwork for medicaid, and weeks of waiting for authorization.
I start a new job this week. I will have to be on my feet for 5-7 hours at a crack. I am cautiously optimistic that I'll be able to do this, and that in a few weeks the Enbrel will kick in and kick ass. I'm still struggling with being fully present to my body as it is today. I can't help but remember where I was at this time last year, how strong I still was, how much work I was still able to do in the garden. It's a little surreal and often rather frustrating. And it is what it is.