prograf

IT'S SUMMER! ALWAYS WEAR SUNSCREEN by Nora Logan

I have always been predominantly Irish (as far as I know, at least that's what they tell me). That equals: pasty and translucent for most of the year except for maybe two weeks in the end of August. I did live in Hong Kong as a kid but never really got a tan because it's not really the place where you tan and when I lived in Bali for 2 years in my early 20s, I did get a great arm-tan because I was always on my motorbike running errands. My work involved a LOT of schlepping. Because of the Irish and French and potentially some German in me, I've always been prone to burning, and I just never thought twice about lathering up with a nice ol' factor 40+ so the sun couldn't get at me. So, when the doctors and pharmacists warned me that my medications would make me very sensitive to sunlight, I wasn't that phased. Although, since then, I've gone through moments where I would get a little manic about it. I've also started a hat collection. So far this includes a Yankees cap I stole from my father and a floppy hat I found in Woodstock. I need some help on the hat front. 

Just casually applying some sunscreen by a pond wearing a scarf in June with shorts to balance it out. Photo by  Lenny Kohlmayer

Just casually applying some sunscreen by a pond wearing a scarf in June with shorts to balance it out. Photo by Lenny Kohlmayer

But, yes, after transplant, I had the fear of god put in me about even stepping in the sun. I was on high doses of Prednisone (a commonly used steroid), and I still am today. This is the main medication that makes you very sensitive to the sun. So I would go outside covered up, wear a lot of long skirts and a LOT of oversized muumuus. I was, at the time, 200 pounds or 91 kgs (I had edema from surgery and being pumped with fluids). More recently, the same day the above photo was taken, I threw a bit of a wobbly about being in the sun. I was away with friends, for the first time since my most recent episode of rejection and it was all a bit overwhelming. I sat by this bucolic setting in upstate New York and just started crying and couldn't stop, for a while, about the idea of being in the sun, about having to wear the sunscreen, about the idea of getting skin cancer from doing something wrong. My friend Michael, who has had his own set of health issues in the past and is very zen about the whole thing, talked me off a ledge and made me feel a lot more at ease. Point is: I am absolutely still afraid of being in the sun, of getting a tan, of getting skin cancer and lesions, of making sure I'm protected year-round (especially since I'm so forgetful) but I can't let it take up TOO much space in my head, otherwise I'll go mental. And there is already enough of that to go around. All I can do is be informed and responsible and make sure I don't bake like a potato at midday with body oil on (which is probably not recommended for anyone, ever). And put good products on my skin. The not tanning thing doesn't bother me, and I have never liked sitting on the beach. It's so hot! You can't read! It's so sandy! Your phone always does that thing where it says TOO HOT with an exclamation mark! Why do people love it so much? I think everyone who likes the beach is a liar. 

Genuine elation at stepping on grass for the first time after hospital, which was one of my goals. Photos and goals thanks to the incomparable Karina Geiger. Beautiful abaya covering my massively stretched body thanks to  Pitusa . Check the umbrella I'm holding, doubles as parasol.

Genuine elation at stepping on grass for the first time after hospital, which was one of my goals. Photos and goals thanks to the incomparable Karina Geiger. Beautiful abaya covering my massively stretched body thanks to Pitusa. Check the umbrella I'm holding, doubles as parasol.

After my initial surgeries in the summer of 2015, we went into winter and wearing sunscreen wasn't as much of an issue, but I had some great tinted moisturizer for my face (SPF 42) that my aunty gave me, which is great and which I'll list here. Then I started researching other non-toxic products, because I already knew the regular stuff wasn't the best in terms of ingredients. Which took me down a crazy rabbit hole, because sunscreen is really one of the most toxic products we can put on our bodies and as I've said before, if I'm putting massive doses of chemicals into my body each day, I'd rather put the least toxic products available to me onto my skin (or make my own). 

So this is what I've been using thus far, I'm still searching for the perfect one but I do like these products. 

Coola

I really like their SPF 30 Unscented Moisturizer, it's light, it keeps you protected and it hits all the big things you want from an organic skincare company. I haven't tried any of their other products but I've read good things.

Raw Elements

I have the Eco-Formula SPF 30 but they have a whole range, I also got the little EcoStick which is good for when you forget to put on your hands and neck in the winter (I am very forgetful), I just carry it around with me in my handbag. 

Elta MD

This is the one I was given and it's great, it's light and it's free of all the bad stuff. It's not the most eco friendly company, but I do think it's also good bang for your buck as I've had mine for 8 months and still have yet to finish it. 

 

Listen, I know what you're thinking, is this bitch crazy? She wants me to spend that amount on sun creams when I can just get Banana Boat for $10 and be done with it? Well you could, and that's your prerogative. But I will say 2 things about that. I understand it's pricey, and I balked at the prices at first too, but for me it's an investment in my skin, that I won't necessarily have to deal with anything down the line and that I can be confident that I'm using something that is non-toxic and I recognize all the ingredients in the products is a HUGE plus. The other thing is, this stuff honestly lasts forever. I have had both the Raw Elements and the Coola products since December 2015 and I still have a lot, and granted I didn't use the body cream everyday in winter, but a little goes a long way. If you work it out to PPU (pay per use), it's actually reasonable. Buying the crappy stuff, in my opinion, is like cutting your nose to spite your face. You can also make your own, which is the best and cheapest option. And it's mega easy. I'll post about making your own sunscreen another day. For now, if you're interested in any of these: go forth and fuel the global economy!

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.