You’ve probably noticed that I’ve been quieter than usual for the last few months. I’ve been dealing with health issues.
Two main things: my vision and my MS.
My vision problems have nothing to do with MS and everything to do with being what my surgeon cheerily refers to as a “high myope.” High myopia is defined as -6.00 dioptres or more. My most recent prescription isn’t far off three times that; I’m a super mega-high myope. One of the problems associated with high myopia is posterior subcapsular cataracts (age-related cataracts are more usually nuclear). My vision is no longer wholly correctable with glasses or contact lenses. In fact, even without the cataracts it was getting dicy: most contact lens manufacturers don’t make them in my prescription; those that did charged about $800 a year (which usually ended up being closer to a thousand when you factor in damage and loss—you lose a lot of contact lenses when you can’t see…).
Not being able to see sucks but not being able to see when you walk with crutches is dangerous. So I made the decision to have surgery: total lens replacement in both eyes. I now have accommodative intra-ocular lenses and I’m busy teaching myself to read again. Well, I will be, when I’ve healed. I’ve only just (Tuesday) had the second eye done. And according to the surgeon it can take three to six months to get your best vision.
Right this minute I can see…everything. Distance brilliantly with one eye, up-close fabulously with the other. Mid-range pretty damn good with both. But the seeing is intermittent. The post-operative inflammation plus the various drops (two anti-inflammatory, one antibiotic) I have to take four times a day for the next few weeks make everything look smeared with vaseline. Or maybe that’s the actual vaseline in the ointment I also have to use. But, bloody hell, I had no idea the world was so bright! Colours are really different; who knew I’d been seeing the world through a yellowish filter for most of my life?
For fellow high myopes: if you can afford it, do it. It will change your life. Three caveats, though.
- Money: most US insurance will cover the surgery only if you actually have cataracts, and they will not cover fancy accommodative intra-ocular lenses under any circumstances. As those fancy lenses come at a fancy price, make sure your bank balance is up to it.
- Pain. One of things everyone tells you about the surgery is that you feel nothing. They lie—or at least do not have the oddly-shaped eyeballs of high-myopes. It hurt. A lot. This apparently is because the weird-shaped eyeballs means it’s a tricky business getting the lens in exactly the right place and for me there was something called a stabilisation ring. Anyway, there was much shoving of pointy things inside my punctured eyeballs. Not fun. But, hey, surgery doesn’t last that long. (Though, of course, longer for me than for anyone else, mutter mutter.)
- Hassle. Most people who have cataract surgery done don’t have such terrible myopia. For them it’s mildly inconvenient to spend a week or two having eyes at different corrections. But for those of us who are at more than -16 D the world becomes an alarmingly treacherous place. I have more bruises than when I was doing karate and getting hit a lot. But they’re healing…
…and then, wow, you can see! Sort of. Right now my brain is trying to reconcile the near-vision for one eye and far-vision for the other. And I’m horribly light sensitive. I’ve been instructed to use light readers even when I don’t think I need them so that my eyes can rest and heal. So that’s what I’m doing. Mostly. Meanwhile, my right eye is 20/20 for distance. 20/20. I’ve never, ever had 20/20 vision. I am amazed. If you see me in the next few weeks and I look off into the distance with a goofy smile, that’s why: I am being amazed. At mid-range, my right eye is 20/25 (and I think that will improve), and at close quarters 20/40 (ditto). The left eye won’t be tested til next week. Pain and expense and hassle are both fleeing, I hope, and most definitely worth it. So, yeah: do it.
And so, now, on to my MS.
Short version: I lost six months of my life to a new MS medication which put me in pain so terrible—the kind of pain that makes killing yourself seem reasonable; I am not joking—that I had to drug myself into oblivion. Every. Single. Day. I came off the meds and within a few days the pain had gone away. My MS is stable. But the effects of six months of heavy opiates and zero physical activity—not kidding about that, either—will take a while to shake off.
Longer version: Last autumn, just before Hild was published in the US, I started Tecfidera, that is, dimethyl fumarate in pill form, sold by Biogen. This is a refined (supposedly) version of an old industrial chemical, that is, a methyl ester of fumaric acid. Variations have been used for years in Germany to treat psoriasis. (Also in China to fumigate furniture…) It has side effects, of course. I read the list carefully. I researched it as far as I was able1. I weighed all the pros and cons. (There are many cons. See below.) I had blood work done. I decided to give it a go.
The first two weeks, on the starter dose, were fine. Certainly within the parameters I’d expected: uncomfortable, inconvenient, but transient. The price was right. (The asking price is $63,000 a year but through the good offices of kind people I got it for free.) Then I went up to the full dose and within two weeks I had the first inkling of trouble.
Quick aside: I injured my elbow in summer when doing archery. After a few days of ice and rest I cautiously re-engaged with the archery and it seemed fine. The occasional weird nerve flash, though, led me to wear a neoprene sleeve to keep the ulnar nerve properly seated.
Anyway, on a late Sunday afternoon in early October I had just arrived in Portland for the PNBA’s annual trade show where I was due to give a breakfast speech to 200 booksellers first thing Monday morning. I was feeling fine: well, eager, energetic, with a knock-your-socks-off speech that would charm (I hoped) even Monday-morning muffin mumblers. We checked into the hotel. Got to the hotel room. And then my heart went insane.
I’ve had a rapid heartbeat before. I’ve had arrhythmia2. But this time my heart just ran away with me. It was like the worst panic attack in the world. Then it got worse. 120 then 140 then 180 beats a minute. I couldn’t breathe. Then pain shot like lightning down both arms, fortunately only for a second. Then the whole thing just…went away. My heart slowed down. I could breathe. I was normal again—though not relaxed.
When I got back from Portland I went to see my neurologist. He said that one of the listed side-effects of Tecfidera was peripheral nervous system excitation: the heart rate, the breathing, and the pain flashes were probably part of that, too. (Apparently, one of the reasons people with heart attacks get radiating pain down their arms is because their peripheral nervous system goes nuts while it tries to figure out how to survive.) But that should die down eventually. Probably.
Hild came out. I had the occasional accelerated heart beat for a few minutes but nothing like Portland, and no pain flashes. I began to relax. My book was out! I was having a blast.
Then one night, the weekend before Thanksgiving, everything went to hell. It was like Portland but much, much worse. The pain shot down my left arm, again and again. Then down my left leg. Then through my torso, up my neck, through my head. Then it all joined up in this sheeting wildfire that turned my mind white. The entire left side of my body body went berserk. I couldn’t think. I couldn’t speak. Only bellow and writhe. Completely insane with pain. If I could have killed myself to make it stop I might have considered it (but I couldn’t have thought it, and I couldn’t have done it). But I was incapable of any coherence at all. Kelley called an ambulance.
I’ve never had an ambulance called for me in this country. I don’t remember much about it except that four ETs—three men, one woman, all totally pumped and radiating strength—appeared in clangour of bells and sirens then behaved as though I were having a heart attack. When it was clear I was not they were perplexed. Next stop, ER. That was a nightmare: another ER in the city had just had a horrible fire, so critical patients were being whisked from there. Beds, patients, IVs, wailing. Total chaos. But even as I was with the triage nurse the pain began to ebb. I began to be able to think. I could say my name. The recovery was rapid. And because I then seemed perfectly well, and there was nothing they could do except admit me, hook me to IV morphine in case of reoccurrence, and wait, I went home.
Long story short: over the course of the next few days, it happened over and over. To no apparent schedule. No one could figure out what the hell was going on. My neurologist was already gone for Thanksgiving/Hanukka/to meet his first grandchild. My internist supervised MRIs and various consults. I filled a prescription for Percocet, which I gobbled like Smarties. More than I should. When my internist found out he hit the roof. (He phoned me twice a day, every day, even on the day of Thanksgiving/Hanukka.) From then on I was under strict instructions: This many, no more. If it doesn’t manage the pain, go to ER, get hooked up to fentanyl, and have them call me.
My neurologist came back. He studied the MRIs. He put me on prednisone on the theory that I was having a relapse. It made no difference whatsoever.
I gradually learnt that the worst times lasted about forty minutes. At first I thought that was just because that’s about how long it takes for oxycodone to really work, but then I started on the automatic schedule thing so there were always opiates in my system and still, forty minutes. Then I figured out (trust me, it’s hard to figure anything out when you’re wasted) there seemed to be another pattern but I couldn’t quite nail it down. I began to log everything: what pill when, what pain when, how long after I did this that that happened. My days were spent at home sitting very, very still in one particular chair and watching the clock until I could take more pills. Without the pills I’m not sure I could have stayed sane.
And that’s pretty much all I did. I couldn’t walk. I couldn’t sit at my desk. I couldn’t sit at the kitchen table. I couldn’t carry a cup of tea. Everything seemed to trigger those cascades of pain. Sitting very, very still with my bloodstream humming with opiates was the only thing that fended it off. (This is why I cancelled so many things.3) And believe me, I would have murdered my own grandmother to fend it off. Sitting still was what worked.
I lost weight—I was eating fine (opiates do not seem to affect my appetite, for food or beer) but I was losing muscle. Lots of muscle. And my tendons were tightening and shortening.
And then one morning Kelley said: I think it’s those damn drugs, at just about the same time as I was staring at the Tecfidera pill in my palm, unwilling to take it. So I didn’t take the pill. I didn’t take it that evening. Or the next day. Or the next. And the pain began to ebb. I eased up, a bit, on the Percocet, stretching the hours between doses. The pain was still going away—except in my elbow4. I stretched the opiates further. I studied my notes. Definitely a pattern.
I went in to see my neurologist. It’s something to do with using my left elbow, I said. And something to do with the bloody Tecfidera. Kelley nodded. I hate that drug, she said. I hate it.
And between us we figured it out: my damaged ulnar nerve was triggering pain signals (normal). But because of my MS, my proximal nerve (demyelinated where it meets the CNS at the neck) wasn’t pain-gating those signals reliably. And because of the Tecfidera, my peripheral nervous system was revved to such a pitch that it was blowing those pain gates off their pintles. No Tecfidera meant no revving. No revving meant my proximal nerve could calm down. Pain-gating resumed. My elbow just hurt normally like any injured elbow would.
So now I have a lot of expensive pills in the cupboard that I don’t need. My experience has been duly relayed to the FDA and I hope no one else ever has to go through it. I’ve had a lot of therapy on my elbow, until I can now sit at my desk and type again—at which point, of course, I was slammed with a zillion essays, interviews, and blog posts for the UK publication of Hild. And then eye surgery. And now a lot of physical therapy to do; I have to relearn to walk. But first I have to relearn to see and my eyes need to heal. And somehow I have to squeeze in going to the UK, touring the US and, oh yeah, writing Hild II.
So I’ve been a bit distracted. But I’m back.
1 For those of you who aren’t aware how this stuff works, pharmaceutical companies with billions of dollars on the line sponsor a lot of studies for their potential new drugs. But they only submit for publication the ones that show their potential blockbusters in a positive light. So anything you read about same is inherently biased, no matter how valiantly medical journals try (or don’t) to ensure impartiality. No one outside the inner circles of the money-making licence-holder really knows about drugs that come to market—no matter how many letters they have after their name or how smart or how respected or esteemed or revered they may be. Don’t let anyone tell you otherwise. I knew this. But I thought: how bad could it be?
2 I’ve since fixed my diet and the problem has largely vanished. And a shit-ton of Benadryl usually helps if something gets past my filters.
3 I did manage a few local events. If you saw me between the end of November and April, I was stoned out of my gourd. Apparently most people were none the wiser. (An interesting data point.)
4 I laugh at pain in elbow. It is nothing, nothing compared that flashing, shooting, drenching, lava-like agony of Tecfidera plus proximal nerve demyelination plus peripheral nerve excitation.
45 thoughts on “My health”
Good heavens, that all sounds atrocious. I am so sorry. I'm glad that you're off the Tecfidera. And hooray for successful eye surgery; I wish you much joy as your eyes learn to work in these new ways.
I am so, so sorry you have been going through this. But I'm so glad you figured out what was causing the pain, and I'm glad the surgery is helping your vision.
I also wanted to tell you that I started reading HILD yesterday, and it is AMAZING. I am absolutely loving it.
Well, it's less than 48 hours since I had the second done but already I know it's going to be fucking amazing!
Now I am smiling :) I hope Hild gets even better for you…
Good God!!! You are one strong person. So glad you are doing better. I suppose, despite the agony of a bad drug, modern medicine is good? I mean in Hild's time you would be legally blind if still alive. I've never met you but I loved Hild so much and all your blog posts and your brilliant mind. Praying for you in my way. I have cataract surgery coming up. Pray for me too. I am fairly badly near-sighted. Don't know my numbers. Going to find out now.
The surgery will be fab. It's the most common surgery in America–surgeons are very, very good at it; they've had lots of practise. Just do exactly as they tell you in terms of before-and-after care and in a little while you'll have eagle vision. It will change your life. Seriously.
And, oh yep, despite the iatrogenic pain which I would never have suffered I am bloody grateful for modern medicine. Everyone I know has had life-saving surgery/drug intervention of one sort or another. The word would be a different place…
Oh my goodness, that sounds terrifying beyond words. I hope the next six months are as painfree as the past six have not been!
Oh my Nicola! That is so awful. Even with your description, I can't even begin to imagine the pain, agony, and worry. Glad to hear you are on the mend.
Oh my goodness, Nicola, what a nightmare! I'm glad that Kelley figured it out and that further examination proved her correct. I'm gladder still that you're on the mend bit by bit. I hope it goes smoothly and well.
Thanks for the update. I'm glad you are feeling better. Hooray for being able to see better, too! <3
Awful Just awful. Thankful you have Kelley!
Wow. I am so sorry you had to go through this. Thank you so much for sharing your experience. I hope this helps others in a similar situation, and a hearty congratulations on the new eyes! And many hugs, and a whole lotta really great beer to you and Kelley.
Dear God in heaven, what a horrible experience that pain must have been. I spent nearly 50 years having almost daily headaches, and I rarely felt as bad as you describe. I'm so glad you figured it out and got off the medication that was causing the problem. Wishing you all the best of luck with a fast recovery from the eye surgery and vision that goes forever.
I am stunned and so terribly sorry you've been through the proverbial ringer. As a nurse, I understand how helpless and horrible it must have been. Sending good thoughts. You're an amazing woman!
Much sympathy, and I am bookmarking this just in case (I've been on tecfidera for a year w/o any significant problems, just occasional flushing, but still….).
Good luck. I hope it works for you. I think if it had been available five years ago, it might have worked for me. But, oh, that pain…
I am grinning. I feel mended. The rest is just work and patience.
Thank you, all. Today life seems miraculous: I think being able to see is a miracle, no pain feels like a miracle, and Kelley for sure is a miracle.
What a horrible ordeal! I cannot fathom how you managed to survive it, but what a relief that you made it through, not only for you but for all those who love and admire you.
Yikes, Nicola! Glad to hear you're past the horrible pain, and that you're happy with your new eyes.
Thanks. But others go through worse, I think. I don't know how they do it. Kelley and I both still flinch when one of us says, “Ow!”
It's been…interesting. I learnt to operate in a relatively normal mode on doses that would stun an elephant. And I learnt to gauge the pain cycles. But I didn't learn to not dread them, or not be totally wired all the time. And now I'm looking forward to laughing without flinching, and being able to see my friends :)
Oh no, sounds like you've really had a difficult time :( Glad you are past the worst of pain.
It pretty much sucked. But it's all in the rear view mirror :)
Oh NIc i am so sorry to read what you have gone through. I know you were having a lot of trouble. I am so glad you and Kelly figured it out. Lots of healing love for you both. Jeannie
Thanks, Jeannie. Kelley's been an absolute miracle. I couldn't have done this without her, and all the other people who love us both. I've never been so thankful for family and friends.
You're always amazing. I'm glad things are looking brighter for you (literally and figuratively).
Thanks. And me too.
Glad things are getting better now Nicola and you can benefit from your eye surgery.
Pain is awful, I've suffered chronic pain for seven years now and (cross fingers touch wood) currently have the right combination of pain meds to keep it simmering. But sympathies as I know how hard it can be to live with pain.
Hurray for Kelley for keeping you grounded and not trusting those drugs.
Hope the writing can now commence again :-)
I'm so sorry for all you've been through!
I'm making my way through Hild slowly due to brain injury – reading comprehension took a big hit – but I'm enjoying every minute of it.
Nicola, I am so glad you are out the other side of this horrible ordeal. May you and Kelley not experience anything like it again! And may your vision continue to improve and all the colors stay bright.
That was gruelling to read…thank you Nico for the telling and for enduring. And thank you Kelley for being there.
Much love to you both – and I envy you your new eyes! X
Whoa. That reads like one of your novels! So glad you're “back”, Nicola.
Of course you handled it by learning everthing about it! Best wishes.
Nicola, I can't imagine dealing with that much pain. You are one strong woman and I'm so glad you have such a wonderful caregiver in Kelley. My best to you. Also, I'm glad the eye surgery is working so well. I had my cataracts repaired and the intraocular lens put in 9 years ago and it really is amazing. Peace to you, Nita
Eh, I don't think of Kelley as my caregiver! But it's true, she took very, very good care of me for a while there. And I was bloody glad of it. Even happier now that it's not necessary :)
Nicola, I'm so sorry to hear about all this pain and suffering, though very glad to hear it's getting better and that you figured out the cause. And glad your eyes are doing better as well. Ironically, I know someone for whom Tecfidera has been a life saver — it's made it possible for her to walk and even do some activities she thought she'd have to give up forever. I wish they could do a better job than trial and error when it comes to figuring out what works for each person.
Augh, Nicola. I'm so glad you figured out the cause of the agony. And doubly glad that you had successful eye surgery. I'm thinking of you both and hoping the end of summer is sweet for you.
erm…my comment was accidentally placed in your blog about being in London in October. The sentiment remains the same, just placed in the wrong slot.
Lots of love to you.
I think that what we call MS will turn out to be several different diseases: different people will respond to different treatments. I have no doubt that Tecfidera will help many people and I'm delighted for your friend. Give her my best wishes, please.
It's wonderful at the moment. The sun has even respectfully hidden her face while I go through the worst photosensitivity :)
Thank you. Also, we're planning to be on the east coast in early November–including Atlanta. Will you be there?
So sorry; MS is a wrecker. Still, bravo — you managed heroically.
That sounds like a reasonable theory, just judging by the people I know with MS. But, as with many things, it makes it hard for folks to make decisions about trying new treatments now. Ongoing work on human genomes may make it easier to sort these things in the future, but it's not going to happen next week. Sigh.
Yes! would love to see you and Kelley. Let me know if you need anything – errands, chocolate, etc.
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