illness

HYPOCHONDRIA by Nora Logan

SOMETIMES THE BUMPS in the road in my recovery feel like they are never ever going to end, and maybe they won't. The 'road bumps' though, are just part of life, really. Life really sucks for everyone sometimes. And everything is relative. The road bumps will certainly get more insignificant though, and they already are. A lot of people open up to me about their own health struggles, most likely because of my own struggles and how open I've been about it, and they more often than not qualify it with 'Well, it's nothing in comparison to what you've been through'. That might be so on the face of it but I received a great piece of advice from a friend's mother many years ago and it stuck with me: Everyone's problems are relative, and no one person's struggles are more important than the next, it's just a different path. I am extremely lucky that I am even in the United States. My friend Tara told me about a friend of hers who is from Afghanistan. When I was in recovery from my liver transplant, she told him the story, with wide eyes, expecting the sort of reaction she had become accustomed to (shock and horror). He said, nonplussed, 'Oh yes, my friend died of that.' It happens all the time there and around the world, where often transplant isn't even an option. So it's relative, and I know I'm fortunate. And as Westerners we take advanced medicine for granted. And yeah, what I've been through is pretty terrible, but it's my journey and I wouldn't change it (mostly because I can't but also because I feel like something positive has to be coming around the bend). 

Artwork courtesy of Peter Tunney

Saying that, there are myriad things that I now have to come to terms with on a daily basis that I just can't always abide. And my patience is wearing brutally thin. This past week I've had a cold and wasn't allowed to travel due to a condition called 'severe neutropenia' which means your white blood cell count is low and you're more prone to infection than normal. Which means no flying. Ok, that's fine. I can move the goalposts and be disappointed about it and move on about that frivolous luxury (after a solid 4 or 5 days of complaining and extreme denial). 'Maybe I can just book this $1500 flight to California for tomorrow and not tell the doctors, what do you think?' I said to Tara only 5 days ago as I furiously searched Skyscanner for deals, knowing full well that it was a fantasy. Those emotions I can move through and feel the feelings and say the crazy things and carry on. 

This is in California. Why wouldn't I try to go here. Photo courtesy of Where Cool Things Happen

But when I'm still being faced with conditions like a low WBC, for the third time, for which I have to inject myself with Neupogen (or politely ask my mother to do it if I'm feeling squeamish, which is most of the time), it's the little things that really set me off. I've had this cold for two weeks and although I was lazy at first about the tonics I usually make myself to kick something like this, it keeps persisting despite drinking cup upon cup of my personal cold remedy and I'm starting to go mad. Not really because of the cold, but because I have an ear issue, that I've had ever since transplant, and it gets about three thousand times worse when I have a cold. It's mostly annoying because I can hear myself talk, which is basically the most brutal thing ever. You know when you hear yourself on a recording and it makes you cringe? That's what's happening in my ear right now, 24/7. I can also hear myself breathe, as if I was in the International Space Station or Darth Vader. When I chew, there's the sound of the food being chewed basically IN MY EAR. I've had it checked by multiple Ear, Nose and Throat Specialists and they can't see anything and don't believe me (ok, the not believing me might be me projecting). But god give me strength, as my grandmother used to say, because I'm not making this up: it feels like there is a hole developing in my ear. Like my ear is just melting into my mouth or something. One doctor suggested it might be a collapsed eardrum but I have no idea what that means and no doctors (ENT or otherwise) seem to know what to make of it nor are they interested in exploring it further.

Then, last night, I was going to sleep and I felt under my arm and there was this strange bump. I am admittedly, pretty gross, so I thought it might be an ingrown hair and it piqued my interest (every girl knows what's up with this--don't tell me you don't love a good ingrown hair). I turned on my light and I had all these deep lumps all over my underarm. Then I suddenly had the urge to check my other armpit. Same thing. WHAT THE HELL. In the night I was uncomfortable and, half asleep, reached for the last of my Avene Thermal Face Spray (basically it's water in a can that claims to 'hydrate') and sprayed it all over my underarms for relief. I don't think that's what the marketing team at Avene had in mind, nor do I think I could pitch them on the multi-use capacity of their product. The woman in this photo would never get lumps under her arms or anywhere else for that matter. I don't think this woman even knows what a fart is.

Throughout the day today it's gotten worse. And after a quick Google search this morning, this afternoon and again tonight, I am in my mind's eye, diagnosed with Breast Cancer, Lymphoma and some other parasitic disease I can neither spell nor pronounce. Because that's what bloody well happens when you Google things. I would not recommend Googling collapsed eardrum, either, if you maybe have what I have (unlikely) because that'll get you thinking about when you should schedule your next ear surgery (also unlikely). 

Image courtesy of Mashable

So this is my new normal. When I used to get the common cold (which was basically almost never), I would let it ride, and not care about it much or pay attention to it. If I got a rash I was like WHATEVER BRO PASS ME THE ALOE. If I stepped on a nail I was like and WHAT? I got my tetanus vaccine back in the day let's go paragliding. Nah, just kidding, I would never paraglide, that's only for white dudes in snapbacks from Omaha. But for real, I wasn't a hypochondriac. I wasn't the person who would be freaking out if I got a stomach bug or a splitting headache. It just wasn't in my DNA. My parents, especially my dad, never indulged me much when I was sick (except for every single time I cried wolf I was sick to get out of school and my ma would be like 'oh ya honey let's hang out all day together please don't go to school' -- true life stories from an only child). My dad's favourite thing to say to me as a kid if I fell over or hurt myself was 'Shake it off'. In my 7 year old head I'd be like dad, what if I don't want to shake it off, dude? What if I want to cry for another 20 minutes? It was useful later in life, though. *Except for that one time when I put off going into hospital when I was in liver failure, that didn't work out so well for me, I guess. So tonight I was eating ramen at home with my darling father and I was talking about The Blob-esque situation going on under my arms (see below for reference) and being extremely dramatic and asking him to speak loudly so I could hear him because I'm now deaf in one ear (I said I moved on quickly from illness, I didn't say I wasn't into the DRAMA of it all). 'So, do you think you're a little hypo now?' he asked me.

The Blob, 1988. It's not that bad under my arms right now, promise. Told you I was dramatic.

Which I hadn't really pondered that much, at least not in those terms. I've never thought of myself as a hypochondriac, but over the past 7 months I've been conditioned by my medical team to literally fear everything. They don't mean to do it, but they do. 'So can I use Nair?' the answer comes back 'Oh, there are so many chemicals in Nair, I wouldn't for now.' 'Can I get a smoothie from the juice place?' 'Oh no, you have to exclusively use fruit and vegetable wash now.' 'How about a salad?' 'Not unless you use your veggie wash.' 'Can I go to physical therapy yet?' 'No, there are so many germs in those places, I wouldn't just yet.' 'Can I got to therapy now?' 'Let's just put that on hold for a few months.' 'Can I go back to being vegetarian yet?' 'No, you know, you need so much protein in order to heal, I'd do another few months of 70 grams of protein a day.' 'Can I lick the side of the bus stop outside my house?' 'No, you'll definitely die from doing that.' 'Would you recommend not using a condom with the friendly hobo on the corner I'm considering sleeping with because I've been out the dating game for 9 months.?' 'That would be extremely irresponsible, even at the best of times, what is wrong with you, Nora?' No. No. No. Maybe later. Never. Absolutely not. I don't see why not. Let me ask someone. No. That's what it feels like, even though there have been some yes's, like going to work and allowing me fly to Miami 5 months after transplant.  It's obvious why I'm fearful when something small happens, since I've been barred from doing so much. I often feel like they are not even listening and the knee-jerk is ALWAYS no. I didn't participate in society for over 5 months and most of the time it was as if we were speaking two different languages altogether, me and my doctors. 

So today I called the doctor on-call at the hospital about these mysterious lumps under my arms. It's the weekend so obviously people aren't working and if they are I am certainly not the priority -- they're saving lives. My doctor is a top-dog and he has a lot of 'partners' who screen the inevitable hypochondriac phone calls he receives on a daily basis, and who I have never met and don't know my story. So of course some doctor I don't know called me back and was blatantly annoyed that I was bothering them on a Saturday. I get it, I am not particularly thrilled to be calling you either, but I was told only last week that I wasn't allowed on a flight and yesterday I ate some fish stew and now I'm considering calling the funeral parlour and penning my own eulogy and making a sweet playlist to play at the party after my funeral when I die of inevitable food poisoning of the armpit, so bear with me.

'What's the emergency, Miss Logan?' (I never got used to being called Miss Logan in the hospital, so formal and antiquated). 'Well, it's not exactly an emergency, but I thought I was supposed to call if there was anything wrong or amiss.' 'No, you're only supposed to call if there is an emergency.' I couldn't even get halfway through explaining what was wrong with me 'Well I have these lumps under my arms I think they might be my lymph nodes, they just sort of appeared overni-... 'Do you have a fever?' [ALL DOCTORS CARE ABOUT ARE FEVERS I SWEAR TO GOD] 'No.' 'Well all I can suggest is that you go to the ER if it's really that concerning to you otherwise you can wait until Monday and call the clinic during normal business hours.' She sounded exasperated that I was wasting her time with this trivial fluff, she's in the liver business not a the business of talking a 20-something with a rash off a ledge. And YES on the face of it, it sounds trivial but how the fuck am I supposed to know if it is or it isn't, considering what I've been through? And the other thing is, I've decided not to call on the weekend previously, because of this EXACT reason, and I've been chastised when I do go in and tell them my symptoms 'You should always call, Nora.' Sometimes it's nothing, a lot of times it's something and it's bad. Like infection and procedure bad. And when I was still super ill, and going through a whole host of other complications and I'd look at websites of other patients who have blogs, a lot of these people would say 'Always call your transplant team if you have ANY questions and they can tell you the answer.' I think it's wonderful and empowering to write about one's experience and I have a deep respect for the people who have these blogs. But that has not been my experience. Maybe these people's doctors aren't New Yorkers.

A lot of the time the doctors do know. I'm not hating on doctors. The doctors saved my life and they did a damn good job at keeping me alive when it was very touch and go and I really love them, maybe to an inappropriate degree (I always go for the hug, they always go for the handshake, it's so fun). But a LOT of the time they also don't know the answers, or they are busy and you feel like a nuisance. So today I'm throwing my hands up and resolving to ask 'Listen, what is the correct protocol for me to follow, because I feel like I get a lot of mixed messages.' Not that that will necessarily clear anything up the next time I stub my toe and wonder whether my hepatologist needs to know (jk I would only call him for that if I drew blood from the toe stub). On the one hand I'm to be vigilant and let them know about everything, on the other, if I tell them about certain things, I feel like I'm hitting a wall and I'm to go elsewhere for the answer or to call after 9am on Monday or go into the Emergency Room which is not my idea of a fun Saturday night. Or I feel stupid for worrying about it. I just want to say, that if there is someone out there, transplant patient or otherwise who feels alone and doesn't know where to draw the line in their paranoia or hypochondria -- whatever the manifestation of their fears instilled by them by their experience, conditioning from medical professionals or just bog standard mental health issues and a fear culture -- you're not alone and there is never a right way to do it. It's easy for someone to say ALWAYS ASK YOUR DOCTOR, as if that's the answer for everything. But are you going to have your doctor on speed dial if you want to eat that pickle with the sandwich at the restaurant that came straight from the jar because you love pickles but you know it's a little iffy and there's a high sodium content? God, I certainly hope not. Or are you going to call your doctor if you get a slight pain in your mouth the first time you go to the beach after being stuck in a hospital room and New York apartment and start hyperventilating and crying and it turns out just to be an ulcer? I don't think so. Are you going to never go to the bathroom in a public place again even though you have a tiny bladder and you live in a walking city? No. Are you going to go back to the dingy bar in Bushwick where people have clearly either just had sex in a stall or been doing lines of coke or both to pee? No, because you're not 21 anymore and it's not a classy place that you would like to frequent.

This is me at 21 in a stranger's flat in Paris posing with a Chucky doll in an ill-fitting belt. Because those are the kind of choices 21 year olds make. I'm 21 in the pic on the right too in one of the aforementioned gross spots I should probably no longer frequent sticking my tongue out.

You have to pick and choose your battles and you have to decide what's right for you and make educated decisions. This doesn't make it easy or straightforward, and it doesn't make you feel any less alone. Hopefully you will have friends like Barrie that you can Facetime and show her, her wife and another friend your armpits because you prefaced it as a having a 'skin question' and she'll offer to ask her doctor friend and he'll be out on a Saturday night but look at the gross photos you took with the self-timer function on your phone and at least tell you what he thinks it might be and say you may need an antibiotic but not to worry about it too much. Hopefully you'll have that piece of information to get you through the weekend and then you'll figure it out as the days come and if it gets worse, it gets worse and you do go to hospital, like the responsible adult you are. Or you'll be one foot in the grave until Monday morning and focus on that. For me, it's a constant battle in my head but my motto is to feel all the fear in abundance, expect the worst and do what I want anyway, because I stayed alive for a reason and it wasn't to hide in my room being afraid of the world. And then be pleasantly surprised when things turn out OK. 

It's only a few weeks until I can take the subway again and I never thought I'd see the day that'd I'd be excited about riding that cesspit of a public transport system. It feels like a final frontier in my recovery, but when things like this happen I am reminded I'm still in the early days, in the scheme of things. But listen, Spring is here and you know the old saying 'Sun's out, guns out' and the subway is a great way to meet guys wearing disgusting flip-flops which I think is extremely inappropriate subway attire, but I need a date. Going to make some business cards with a link to this blog post and the tagline 'Friendly hypochondriac looking for love in the big city. Doctors, medical school dropouts or people who have exclusively doctor friends need only apply.' Will let you know if I find a business card that can fit all that copy on one card. 

WHEN YOU GO TO A FOREIGN COUNTRY, DOCTORS GET REAL UPTIGHT by Nora Logan

SO I WENT to Bali last summer. My best friend Claire lives there part-time with her husband and two kids, Atlas and Sochi. Sochi is my godson and I had never met him before, and he was already 18 months. The last time I had seen them was when Claire peed on a stick in Bali and found out she was pregnant again and I watched her experience the gamut of emotions one can experience when finding out such joyous (and terrifying) news. I was determined to meet him when he was still baby-ish and so I booked a slightly irresponsible flight to Bali in January 2015. I have a long story with Bali, that could fill a blog or 3, I lived there for 2 years and I started a business there and I learned a LOT from living on an Island in the middle of the Indian ocean. It's the sort of place that affronts you with its lessons, and comes at you head on. It's a second home of sorts: I learned the language, I set up an office, I planned Claire's wedding with my business partner at the time, I rode everywhere on a motorbike, I lived by myself in a really creepy old house where it rained into my bed and bearded dragons lived in my shower and I never once got ill. I never even had 'Bali-belly' or Dengue fever which are both real things that people get all the time in Bali. Claire has a well-known instagram account and when things got really hairy and I went on to the transplant list she posted this, and I was floored by all the love that came flooding in from friends and strangers alike: 

Screenshot 2016-02-03 00.04.19.png

In fact, I was never really ill with anything serious a day in my life. I was a colicky baby but I don't remember that! Babies don't remember that shit! I did have jaundice as a baby too-- was that foreshadowing in the story of my life? I don't know. Who knows these things? Only god above us and the universe and the planets and Mother Nature and Pacha Mama and the Virgin Mary and Joan of Arc and Ghandi and all the dead people who have come before us. The most extreme thing I ever experienced was exactly one year PRIOR to my liver failure, which was a shoulder surgery in August 2014. I was a big baby about that. But it really hurt. This is me in a sling laughing at my friend standing in a bathtub at a hotel. 

Dear August 2014 version of myself: just you wait and see what happens, mothafucka.

So I go back to Bali to meet my godson and see my adopted little family. We have a pleasant couple of weeks together, a beautiful reunion and a few weird experiences go down (stories which I'll save for another time), I get stuck in Bali because of a volcanic eruption and I go home. Three days before my departure, Claire and I have dinner with some friends who are also visiting Bali from London and who, it just so happens, are also doctors (and who would help me immensely as I got deeper into liver failure and the need for a transplant was so obvious to everyone but me). We sit down to our delicious meal, I have had one cocktail andone glass of wine with the food (not enough for the exorcist situation that's about to go down). In the middle of our dinner I book it to the upstairs bathroom to spew my guts out, involuntarily. I'm such a weirdo that I go back to the dinner table, and not wanting to ruin dinner for everyone, keep schtum about the Apocolypse Now situation going on in my stomach, unable to eat another bite. That's right, I didn't tell my friends WHO ARE REAL LIVE DOCTORS. I never claimed to be clever. I fess up at the end to Claire and say 'I feel so bizarre, I had to go be sick in the middle of dinner.' 

Me and my little nuggets. I think I was already on my way to liver failure at this point.

In the days that follow I'm trying to get on every and any flight out of Bali to get back to New York for work Monday. Unfortunately there is a backlog of people who have been trying to leave for days and a LOT of angry, hot tourists and a LOT of extremely inefficient Balinese airport officials without any information whatsoever. It's chaos. All the while, I am vomiting pretty consistently and I'm so confused because I've never felt this sort of sensation before. It wasn't your typical vomiting situation. It's hard to describe but it was pretty much like nothing I had ever experienced. And listen, I have done a fair amount of vomiting in my time. Another BFF, Barrie, who features heavily in this story, always says 'You've always been a puker', when I have complained about the never-ending nausea that accompanied my transplant. But that was my only symptom at first. Besides feeling a pretty irrational and extreme anger at all times for about 3 weeks--I'll get to that later.

My layover in Hong Kong, where I met some illustrious local men.

So I finally get on a flight that gets me in early Tuesday morning. I'm a day late for work and freaking out about it by the time I get back to NYC. I'm also in liver failure, which I did not know nor have the slightest inkling about. Looking back, there were signs, and I really should have. Bizarrely, I made it through the 35 hour flight and transit time without any incident and without being sick. My body was kind to me for that time and I'll always be grateful that my old liver held the sickness at bay so I wasn't spewing all over a 747 from Bali to Hong Kong to Vancouver to JFK. 

The erupting volcano on my way out. I hated it so much at the time.

A lot happened in between the 14th and the 28th, when I finally went to hospital, dragged by my extremely intelligent, astute and charming mother. I'll get to that later, too. 

Cut to 2 weeks later, and I'm in hospital and being asked anywhere between 20 to 40 to 60 questions over and over and over and over and over by different groups of doctors. They. Just. Could. Not. Get. Over. The. Bali. Thing. It was a Thing and everyone seemed sure that I went to Indonesia and got some scary illness that they just had to get to the bottom of and that was decided and that was that. Doctors would begin every conversation (more of an inquisition if you ask me) with 'So I hear you went to Indonesia, start from the beginning...' And I'd have to tell the story of how I went and what I did and what I ate and what I drank and where I slept at least 20 times a day. I'm not exaggerating. They were very concerned with whether I ate mushrooms. The meant magic, I thought they meant cooked. I'd reply 'Well, I think I had a curry, there may have been mushrooms in there, I can't really remember.' No one ever corrected me until much later on, which I found rather strange once I finally did find out they meant the mushrooms that get you high. Well doctor, I have done mushrooms--in fact they featured rather heavily in my adolescence (shout out to growing up in London when fresh ones were legal at Portobello and Camden Market and going to Amsterdam when I was 16, 17, 18 and probably 20 and discovering myself through the medium of hallucinogens), but this holiday with my two toddler nephews? No, no, they did not come into play this time.

They never found out what was wrong with me, and I'm still not wholly convinced my liver failure, which decimated my old liver in under 3 weeks, was caused by something I picked up in Indonesia. Third world countries already get a bad rap for being unsanitary but I know how to operate in them correctly. Needless to say, I was exasperated with their obsession with my trip and I was also dying, so with each day my patience (and stamina) waned for hearing the same questions hour upon painful hour. 

Now whenever I tell people I got sick in Bali, many of them say 'Right, well, there go my Bali plans. Never going there now.' And I have to say, no, no, no. Bali didn't commit this crime, man! This was some next level, who knows, mysterious, unknown parasite, toxin fueled, spiritual attack type of shit. Bali is a part of this story but it shouldn't scare anyone from travelling or being adventurous. If anything, the fact that I went to Indonesia and came back so sick should spur you to do more, explore more, travel more, live life now and stay in the present. Because you never EVER know what could hit you, and you never know when your time is up. We have no control. The control is just a myth we tell ourselves to try to stay sane. I understand the need for the myth, but it's not real. 

Bali was just the beginning of the most radical journey I have ever been on in my life. And listen, I have a lot of airmiles.