I have mentally begun this post for weeks, but a chronically ill life has a way of shaking loose any idea of control over one’s destiny.
Anyone who has been ill for a while will understand what I mean when I say I’m suffering a bad case of doctor fatigue. In fact, at this time I don’t really want to explore in depth the recent doctors’ appointments that led to the flare-up of this pernicious malady. Suffice it to say that I’ve sometimes gone years without trying to explore the whys and wherefores of my illness, and the corresponding blank diagnostic stares of sometimes several different doctors in quick succession. I become convinced that I must be making this pain up. I don’t know how to repeat my history any more. After over twenty years, it’s too convoluted and lost in the murky mists of time.
Sometimes you have to know where the quality of your life went (an inquiry that preceded this present case of doctor fatigue), and other times you just settle for making it through, trying to cling to an illusion of control. In reality, while we can make choices in life that are hopefully for the higher good of not only ourselves, but those surrounding us, there are other times when we realize that there are no right choices. Life is chaos. Life is change. The nature of reality is, as the Buddhists would have us believe, impermanent.
Thus I have a medical record that is tarnished at best and littered with holes years wide at worst. I believe more than ever that you need to have your medical records. Knowledge is power, and all that. I say it blithely because sometimes knowing is a burden, but sometimes not knowing is crazy making. If I were to give you an informed speech, I’d tell you the importance of understanding your medical history, your symptoms, your medications, your reactions to said medications, and the results of key diagnostic tests. This knowledge is vital to working in concert with your medical care team to improve your health.
However, I’m not in that place right now. Sometimes you know that your harried doctor just sees you as another diagnostic enigma (pain in the ass). Sometimes you convince yourself that your medical care team doesn’t care anymore. Indeed, sometimes you need your record only so you can google random things at 2am in the morning when you’re in too much pain to sleep and too afraid to take pain medication for fear of what that might bring. And of course, you sometimes “need” to review your medical history to agonize over all the poor treatment choices you made (or let doctors make) that might have led you to where you are now. And sometimes, like now, you need to not think about it at all, and just dream of cancelling whatever appointments you have on the horizon.
During one of my periods of doctor fatigue back in 2007, I let my then GP put me on Gabapentin – an anti-epileptic drug that is used sometimes to relieve neuropathic pain. It’s thought that Gabapentin may be of some assistance in relieving the pain associated with fibromyalgia. I’m not sure of the reasoning for this choice now, given that I’m fairly sure at the time I was experiencing the non-swelling joint pain that I experience with Sjogren’s syndrome. Knowing the pain I know now, I’m not even sure why I couldn’t take the pain that felt like someone was hammering little pins into the last joints of my fingers, that always looked so benign, albeit puffed with fluid, whenever they were examined by my rheumatologist.
Having known what it’s like to have my feminine bits rupture, and then having spent the last two and a half years feeling like I’ve been perpetually kicked in the gut, I would have told myself to “man up” and deal with it. Hindsight. But I digress…
The problem is, in 2007 I was suffering PTSD of the soul, and I wasn’t really conscious. I didn’t make any notes of dosages, reactions, or the simple reasons for why I might take a drug like Gabapentin (substitute whatever drug name you like here), or why, more importantly, I might stop taking it. When you’re in this place, you assume (perhaps wisely for the sake of your sanity) that this pain is now, and that it will go away with treatment or time. You don’t consider that 5 or 10 or even 20 years later you might need that information, which you can only surmise using what evidence you have. In my case, that’s a couple of blog entries and a handful of prescription receipts.
So when this pain in the proximity of my gallbladder (it turns out it wasn’t my kidney after all) decided to kick it up a notch, I asked my current GP for better pain control. I was given morphine, with Gabapentin as a chaser, supposedly to make sure I didn’t need as much of the heavy morphine stuff. The doctor asked why I’d given Gabapentin up before. I said, guessing, “Because it wasn’t doing anything”. I’m not a fan of downing prescriptions of doubtful efficacy, so that’s likely why I gave up a drug that wasn’t working. I didn’t even think about potential harm. So when my current doctor prescribed Gabapentin, I agreed.
Within two weeks I began the slide into a crushing depression that terminated (pardon the pun) with a delightful sunny day full of glorious thoughts of how I would end it. I realized that the new meds were probable culprits. With a bit more googling, I found this gem on the U.S. Food and Drug Administration site: Suicidal Behavior and Ideation and Antiepileptic Drugs. Drugs like Gabapentin (Neurontin) are known to be associated with this very side effect. And given my apparent sensitivity and predilection for drugs giving my mood a dire turn for the worse (Plaquenil, Prednisone, Tramadol…), perhaps I should have thought about this. Instead, unfortunately, I was only thinking about relief of the pain.
So the moral of my little story is, if I had kept a record somewhere, I might have known. I might have even been able to associate a psychiatric flu in 2007 with Gabapentin. This post is a reminder to myself: don’t take Gabapentin again! Of course, to others Gabapentin might be a godsend of a drug, but it wasn’t to me. We all react differently to the same drug. We all react differently to the same disease. The only way we’re going to know what’s going on is if we keep records, and in the case of my spotted history, if we play detective and reconstruct those records with what we have. I’m using the website ‘Patients Like Me’ to reconstruct my own story. Whatever you use, use it as diligently as you can, and whenever you find a break in the storm, update your record. You may need it some day.
Which leaves me where I am today. Virtually sworn off all prescription drugs. Even with the days of pain I’ve endured lately – days where I feel minutes away from dialling 911 for an ambulance, I’d almost embrace that pain than the roller coaster ride of the unknown reaction to a drug. It drove me back to my naturopath, who confirmed a random technician’s deduction that the locations of my pain are related to the gallbladder. She prescribed me a bile replacement (courtesy of a random ox somewhere, who I can only hope was blessedly relieved of life for his meat and his bile was an additional gift to me). Within a day, my bowels, which had all but shut down four months ago began working again without pipes full of laxatives.
I thought I might have resolved this new piece of my Sjogren’s puzzle (constipation), but yesterday I was beset by another ER-threatening blast of the pelvic pain that last year sent me on a similar ride in an ambulance with universally dodgy suspension. This got my mind working overtime as, after all, it was the pain I thought had been resolved by the removal of those aforementioned female bits. I could proceed now to google chronic appendicitis, but I’d be grasping in the dark.
Weeks ago, when I underwent another fruitless abdominal ultrasound, I said to the technician, “I just want an answer to this pain”. She looked at me as if I was speaking another language, and maybe people in the Land of Well do speak another language. It’s like the gastroenterologist I visited earlier this month who said, “Well, on the bright side, at least you know it’s not cancer because it’s been two years and you’re not dead.” I suppose in the Land of Well, cancer is the worst conceivable boogeyman. If you’ve been travelling the shadowlands of the Land of Dis-Ease as long as I have, you’d know that there are worst things than the known, and that’s the unknown.
Now, I realize yet again that sometimes there are no answers. Sometimes you have to let go of grasping for answers. Sometimes our souls are in pain, sometimes our minds, and sometimes our bodies. Sometimes we luck out and a thoughtful diagnosis can make the difference between years of suffering or not. Sometimes we find our answer, only to learn that there’s nothing we can do about it.
Like many others, I have Sjogren’s syndrome. Some people may find a suitable treatment and recover much of their quality of life. Some people experience Sjogren’s as an inconvenience or an annoyance – a constant reaching for a bottle of water or eye drops. Others experience it as a life-changing mystery, and those who are (as my naturopath put it) sensitive to conventional treatment have to find peace in the now, whatever that now looks like. Sometimes it’s not pretty, but it’s life, and given that sunny day full of awful ideas, for now I’d rather be in pain and with the ones I love, than not to be at all.
In the meantime, I, like so many others, must record our stories in hope. The hope that they’ll make sense one day, even if there are no happy endings. The hope that they’ll provide a lessening of someone else’s suffering, even if it’s just in the knowledge that they’re not alone.
You’re not alone.