side effects

OH, FOMO by Nora Logan

THIS PAST WEEKEND was a long weekend, and from the comfort of my sickbed I watched my friends and acquaintances enjoy life on social media being social and out in the world and travelling to the beach or the country or staying in the city or whatever fun plan it was that they had. I had to really try to refrain from throwing myself a pity party. I did not succeed. I was experiencing FOMO (fear of missing out) hard. And not in the 'Ugh I'm having such major FOMO from seeing all my friends together this weekend in Vegas. Wish I didn't have to be here in boring old St. Tropez sunning myself at Nikki Beach. SUCH major FOMO' or 'Man, life is so hard, all my bros are bro-ing out together in Miami and I'm stuck here in this time-share in Aspen swish-swishing. FOMO vibes, man'. I don't know anyone who has ever uttered those words nor do I care to but that's what I imagine people who employ FOMO on a regular basis would say. You can leave a comment if i'm wrong but I'm pretty sure I'm right. Let's all stop using it, ok? Instead of fear of missing out, let's use HAWASP: how-about we all stay present. Probably because it's easier said than done, Nora and that's not the human condition and it takes a lot of meditation and breathing to not see the grass as always greener especially with the recent advent of social media. Oh yes, that. I digress.

By Sunday evening, I threw a tantrum. I'm not in the habit of throwing tantrums, at least since I was about 5 years old, or if my blood sugar gets really low and I turn into a monster until I am able to eat. I was reading a book called Eat Dirt by Dr. Josh Axe. It's all about how we have to get back to the earth, roll around in the dirt, stop overly sterilizing our homes from modern types of house cleaners, to eat probiotics and fermented foods, to chuck all the processed food from your cupboards and to stop using hand sanitizers so the good bacteria exists with the bad. I agree with the hypothesis for his book, I respect what he tells his patients to do, and one can't deny the success rate he has with helping and curing people. BUT THAT DOESN'T MEAN I HAVE TO LIKE IT. 

Everything I was reading I was having to go, ok, nope, can't do that, can't do that, can't do that or that or that. Couple this with experiencing FOMO in a really palpable way and not absorbing any nutrients (seemingly) despite eating every two hours, having a distended abdomen (mostly annoying for vanity's sake, also slightly worrying for medical reasons) and having everything go straight through me to the point where I was actually physically prohibited from doing anything, made me want to tear my goddamn eyes out. I am not that violent nor am I character on American Horror Story so I settled for throwing the book across the room and dramatically yelling 'What's the fucking POINT?!?' into the ether, and sobbing (as is my wont to do these days). My parents were both around, and my dad has sort of got used to my daily tear ducts exercising their rights on the general population, plus, he's a guy and historically I have found they get really tetchy and weird when women start crying so he just rode this one out. My mother came to my side and said the usual: it's going to get better, you're going to start to feel better, it's going to be fine, you'll be able to get back. But, me being me, and being the stubborn asshole Scorpio I am, I was having none of it and inconsolable and defeated. There is just no point in me continuing to educate myself on how to heal, naturally, was my thought, because half the things I'm either required to do because I'm immunosuppressed or have to steer clear of because I'm immunosuppressed. In that moment, I resigned myself to my doom and gloom and locked myself in a tower in the belly of the whale and swallowed the key which would probably come out the other end in an hour so the joke was really on me. 

The irony is, it's not like I could have gone upstate or to the Hamptons or boarded a plane or even gone to Prospect Park and actually have enjoyed myself, there is no way. I couldn't eat without feeling sick, I could barely breathe without feeling sick. I slept most of the day on Saturday: I could barely keep my eyes open. And on Sunday I managed a short outing to my old apartment in Brooklyn to drop off some things and pick up an extremely important cookbook by Hemsley and Hemsley and some bikinis that I obviously really needed what with my distended gut. But that was controlled, in a car with my aunt, who always makes me feel very safe, with air conditioning, and even then I was wincing over every pothole. I wasn't in any state to be gallivanting around enjoying life, and I knew that going into this. I knew that the healing would take a while, as I've said before, I was forewarned that this would take time. But when you've got no time frame and no end in sight, it's hard to reconcile. 

In the time since I went into hospital and now, I have had to miss countless social gatherings. That's ok, I'm fine with that. But one of them was a wedding of a very old friend, one of the sisters from the French family I did an exchange with when I was 16, and it happened in New York, so I technically could have easily gone, if not for being in hospital/liver rejection. The others were the 30th birthday of another old friend, the opportunity to record a podcast with the amazing guys from Sickboy in Toronto, a weekend to Miami to see one of my best friends, Karina, a train ride to Vermont to see an old friend and do some healing out of the city jungle. I also didn't get to see another of my best friends, Tara, graduate from law school, something that was more important to me than anything else, because she had worked so hard to get there and because I simply wanted to be present to witness such an exciting milestone in her life. And the thing I was  really angry about: the day of the NY primary, being told in the morning that, absolutely I could go and vote, and then later on in the day, when I was about to go vote, being told that Patient Services (an oxymoron if you ask me, in this particular case) had stepped in and didn't want me to go for liability reasons and gave me an application for an absentee ballot that would have to me either BROUGHT BY HAND to Tribeca so I could then get a ballot to vote and then I would have to post it and I would have to find someone willing to do this for me in the next few hours (something I had to deduce on my own and even then it was vague as to whether someone could actually pick the ballot up for me, despite calling the Board of Elections for clarification). Either was there was a fat chance I could find someone willing to pick that shit up from the Upper East Side, bring it to Tribeca and then back to the hospital and then send it for me, patient services. Are patient services Trump supporters?!?! That's why they were keeping us all there. I get it now. Insert X-Files theme music here. So I didn't get to vote, it sucked, it's something I was looking forward to and it was taken away from me and I was pissed off and upset, but I got over it (after much complaint and protest). 

In the scheme of things I'm completely aware that these are fully first world problems, and I was perhaps too gung-ho about making those trips and plans. And that missing out on these things is not important in the scheme of things, and they are NOT linked to my self worth nor do they necessarily matter. But I'm young, people are getting married and having babies and turning 30 and there are fun trips to be made. And showing up to these things, they make me really happy. I really love celebrating with other people, it's just always been a real pleasure of mine. Maybe to a fault.

My friend Barrie suggested this week that I perhaps affix too much importance to these events and build them up in my head and then ultimately get disappointed and break down when they can't happen. I was defensive and said no: you don't get it. As much as one might try to understand or how well one knows the situation or how close to the person one is: you don't really understand what it's like to have your life ticking along and all of a sudden it shuts down and you can't go out or do anything and then just when it starts back up again (or seemingly), it all gets ripped away from you. Perhaps I do put too much of an importance on these occasions, but who's to say it's wrong or unnecessary or who cares, there will be other things down the line. One can't say because no one approach is correct; each person will react differently. Having something to look forward to keeps me going and so I'm not going to stop at least attempting to have some semblance of participating in my social life to the extent that I am able because it keeps me sane. EVEN IF it then makes me momentarily unconsolable, throw a tantrum and dramatically throw a book across the floor when I am unable do them. That shit is what you've got to do to survive. 

A WORD ON MEDICATION (THE FIRST OF MANY) by Nora Logan

THE MEDICATION ASPECT of my transplant was one of the scariest parts of the whole thing. Because it came at me sideways and hit me like an oncoming sideswipe by a massive SUV. Doosh doosh. You're going to have to take 20+ pills a day. Doosh doosh. They're going to suppress your immune system and you won't be able to leave the house for 3 months. Doosh doosh. They're going to give you an endless list of side effects, but we can't tell you exactly which medications cause what. Oh, and you will barely be able to swallow them for the first 6 months because you'll be in a constant step and repeat of nausea and other complications. But you gotta take em, they're lifesaving. I felt extremely nauseous for basically 6 months after transplant. I still have my moments, seven months in. It has been so brutal, it got to a point where I really thought that I'd never have a day without feeling sick. 'Oh yes, great, Darling Doctors,' I said, 'Can't wait, really looking forward to it -- so into this new life I've got and can't wait to keep all these pretty coloured pills straight in my shiny new plastic pill holder the size of my head.' No I didn't say that. I grimaced and nodded my head and swallowed the pills and then threw them back up. 

Photo courtesy of  Subversive Cross Stitch

Photo courtesy of Subversive Cross Stitch

I remember when the pharmacist came into my hospital room to give me a tutorial on all the medication I would be taking and I could barely keep my eyes open. He was such a sweet guy. I didn't understand anything he was saying. It was as if I had forgotten how to speak English altogether. I was so out of it that first time he came to speak to me, they had to set up a second tutorial to make sure I really understood. It was the same guy and this time I managed to keep my eyes open for him. But nothing really sunk in. So many pages upon pages of information and side effects and interactions. Then the main pharmacist came in right before I was discharged to show me some tricks of the trade, as it were, and teach me how to fill my pill-box. It was a whole new world and it truly felt insurmountable. I had no idea how I was going to keep them all straight nor how I would remember the dosage or what they were for.. Prograf, Prednisone, Myfortic, Dapsone, Omeprazole, Vitamin D, Calcium, Fluconazole, Valcyte, Bactrim, Magnesium, a multivitamin and baby aspirin. I had to memorize the dose of each one too? Were they aware that I wasn't quite sure what my name was anymore or where my ass was in relation to my elbow? 

My medication box at the beginning. It was unbelievably overwhelming.  

Let me also say, I was never into pharmaceuticals before my illness. Not that your average person is 'into' pharmaceuticals per se. But I love homeopathy and holistic medicine. I took various supplements for wellness in my old life and I liked to cure things by eating probiotics and using vegetables for medicine. I hadn't had a proper cold for 3 years because I had been taking Oil of Oregano regularly. I made my own tonics with turmeric and ginger. I was on one, in terms of the natural health train. And I still like to cure the common cold with natural remedies. I don't believe in the flu shot (although--at least for now--it is compulsory for me to get it, a girl can dream, right?). I was on the fence about vaccines for children and babies, I still am. I don't trust big pharma. None of us should really. And then my whole life got flipped upside down and I was forced to reassess and essentially go against my values and things I really believe in in order to stay alive. Some might say it's a small price to pay to be alive and well. But the thing is, I wasn't at first. I was very much half dead and not well at all. And I was pissed off (for a whole host of reasons) but also because I was taking so many pills and I could feel the chemicals coursing through my veins and it went against everything I believed in and I had to accept it. I had no control whatsoever. 

Are you fucking joking? I have to attempt to swallow all of these horse pills? 

Are you fucking joking? I have to attempt to swallow all of these horse pills? 

At the very beginning, I would cry when taking my pills, it was so painful. It physically gave me pain to swallow my medication and I had no choice but to take them, because they kept me alive. And if I threw them up, I had to take them again because I couldn't miss a dose -- and that happened all the time at the very start. If this is something you're going through right now, I know you don't believe me, because I didn't believe it at ALL just a few months ago, but it starts to get better, slowly at first, and then all at once.

I had to take them one by one. I would often vomit them up. I thought it would be this way for the rest of my life. 

They ask you to memorise all your pills and in particular to familarise yourself with your immunosuppressants. The thing is, for me, is that I went into this ass-backwards and belly up. I didn't have any preparation for a liver transplant, in the way many people do. There were no pre-transplant workshops for me to put my mind at ease or to learn about how it might be. I went from a normal healthy 28 year old to knocking (loudly) on death's door to liver transplant recipient in a matter of 3 weeks. Wild. I remember going into the clinic for the first time after getting out of hospital and the Physician's Assistant, who took over my care once I was out of the hospital and who has taken wonderful care of me, but is also tough as nails and a no-bullshit woman from Brooklyn (with, I like to think, a heart of gold). She asked me to repeat all my medication I was taking back to her and the dosage of each one. There were SO MANY and the amounts were all SO varied. I said the wrong dosage for my Prograf at first (an immunosuppressant anti-rejection drug) and then I back-peddled and said 'Oh no I think it's 0.5mg, not 1mg'. She said 'Well, you really need to know what your medications are and what the dosage is.', in her matter-of-fact way (that I have since gotten very used to, and even grown to love. Ok that's putting it strongly. I've come to appreciate it). I burst into tears on the spot because I felt like I was doing it wrong, that I was supposed to have it all sussed out. Guess what: no one does. I never thought I would get a handle on the dosage, I never thought I'd be able to swallow the pills, I never thought I would stop throwing the pills up. But it got better in time, and now it's almost second nature and I can even shovel 5 pills into my mouth at once and get them down my gullet in a matter of seconds. It took me literally an hour of concentration to get through the torture in the first couple of months. Now I know the dose of every single one of my medications by heart, I know their names and I know what they're for. I really didn't think that would be possible at the time, but it is -- just like anything.

Even though I do forget to take my pills almost everyday. I have learned that alarms are extremely useful for this. I now have a surprisingly bad memory thanks to whatever it may be: medication, anesthesia or just your bog standard run of the mill trauma of a near death experience and multiple surgeries may have incurred. Luckily it's not on purpose, the forgetting. I have plenty of reasons to want to keep on going and I'm not going to stop now.

More soon about how your shit gets really fucked up from all these meds, especially if you're a grapefruit lover. But who is these days besides your grandmother, right?

No more grapefruit. Or fun.