I’ve spent the entire week working on a different post, but instead I’ve decided I need to share some very real frustration on behalf of myself and other chronic illness patients.
Imagine you have an ear infection. You make a doctor’s appointment to treat your ear infection. You assume, rightly so, that your doctor will write you a prescription for an antibiotic to treat the bacterial source of the infection. Imagine instead, that your doctor offers you every treatment option for your ear infection EXCEPT an antibiotic.
This is very often what it is like to be a patient with chronic pain. You know that a narcotic pain medication would treat your pain and improve your quality of life, but your doctor is unwilling to prescribe one to you because of the current level of scrutiny surrounding the “over prescription” of opioid pain medications in this country.
I use quotation marks in that last sentence because they are not being over prescribed to patients like me. In doing so I’m not trying to make light of a very serious issue, but to bring attention to the people that are suffering as a result of a very complex and misunderstood problem. And, while I’m happy to engage on discourse on the subject, I won’t do it here on this blog.
I’m trying to work with my Rheumatologist to find something to better manage my pain, and, while she’ll prescribe me an anti-depressant for pain management, she won’t prescribe me a narcotic pain med. Makes sense, right?
I’ve always been the “I hate pain meds” girl. But I’ll let you in on a little secret: I don’t actually hate pain meds at all. What I hate is the stigma associated with taking them. That somehow I’ve given in, or, worse yet, that I’m not strong enough to overcome this pain. If I know one thing about myself it’s this: I am beyond strong. I am superhero strong. Physically, emotionally and mentally. I wouldn’t have survived the last 21 years with this disease otherwise. But sometimes pain, chronic, all-consuming pain, is stronger than me, and it leaves me battered and bruised, too weak to fight back any longer.
That’s where I am now. Battered, not quite broken, but getting closer every minute.
Over the past few months, I’ve “played nice” with my doctor taking Tramadol and Flexeril while they’ve been woefully inadequate at addressing my pain. Tramadol made me anxious – like I wanted to crawl out of my own skin. While Flexeril makes me sleepy but not quite sleepy enough to actually get quality sleep.
So I tell my doctor, “hey, this isn’t working”, and she suggests Neurontin. For those of you that don’t know anything about the drug, it’s typically prescribed for nerve pain and requires a round-the-clock regimen – not something you can just take as needed. I sourced this suggestion to my #ChronicLife family via Twitter, and they reported that not only does it make you drowsy as my doctor mentioned, but also foggy and unable to remember things such as the correct word to use in conversation. What. The. Actual. Fuck. How is this a solution? Pain and fatigue are hard enough to manage on top of work, but how am I supposed to work effectively while taking something with known cognitive side effects?
So I told her, “Nope. That’s not for me”, and what does she come back with? Elavil. An anti-depressant. Believe it or not, this is a common practice in managing chronic pain/achieving higher quality sleep for some patients, but the side effects are pretty shitty. Under the tag “Less Serious Side Effects” are the following:
- nausea, vomiting, constipation, diarrhea, loss of appetite;
- dry mouth, unpleasant taste;
- feeling dizzy, drowsy, or tired;
- trouble concentrating;
- blurred vision, headache, ringing in your ears;
- breast swelling (in men or women); or
- decreased sex drive, impotence, or difficulty having an orgasm.
Let’s talk about that last one for a moment, shall we?
Without getting into graphic detail, I’ll tell you that managing one’s sexual health while having a chronic illness is daunting. It’s something that isn’t talked about nearly enough in our patient community, and, in 21 years with RA, not one doctor has ever asked me about my sex life. Nor has one ever communicated sexual side effects from medications to me. Those I’ve always had to research on my own. The closest thing I’ve ever gotten is “Are you on birth control? You have to be on birth control while taking Methotrexate.” So you’ll ask me about my birth control, but not my sex life – hence the need for birth control? Thanks, Doc.
If I sound angry, it’s because I am. I’m angry at constantly being faced with decisions like this. I’m angry that my sexual health already suffers as a result of pain and other symptoms. I’m angry that my doctor would suggest an anti-depressant before she would suggest a narcotic drug. I’m angry that people in this country can’t distinguish between addiction and long-term pain management. I’m angry that so many of my fellow patients and friends are vilified and treated like addicts. I’m angry that I feel so uncomfortable asking her for something I think would help. I’m angry that I have to be worried that asking a simple fucking question may be viewed as “drug seeking”. I’m angry that I can’t remember what it feels like to not be in pain. I’m angry at being angry. It’s not in my DNA, and I try above all else to choose positivity. To choose gratitude every single day in the face of sometimes insurmountable odds. But, perhaps even more than angry, I’m tired.
So tired that all I can do today is try to talk myself off the ledge. Maybe eat a little dinner, snuggle with Penny and go to bed in preparation of doing it all again tomorrow. Tomorrow I’ll write an email making my case for Norco or maybe Nuycenta. And tomorrow will be a better day – because it has to be.