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Archive for the ‘Drama of the Medical Sort’ Category

The title of this post could refer to many topics…love and hate; pleasure and pain; food being pleasantly hot and hot enough to scald a layer of skin off your tongue, thus making everything you eat over the next two days taste terrible (this just happened to me when I tried to eat soup at lunch today).

But today I want to talk about that expression in relation to health.  There is a fine line between being a whining complainer of health issues, and being so much of a trooper that people forget you even have health issues and lose all sympathy.  Of course I speak of this in relation to my own health problems, but I’d like to first talk about a colleague of mine who has a wife undergoing treatment for breast cancer.

He told me that she’s been in a really bad mood lately. She’s just over halfway done with the second (and hopefully final) phase of her chemo treatments. In the mean time, she’d come down with some sort of respiratory illness (not serious, thankfully) that was causing coughing fits and sleepless nights. She was also having trouble breathing.  This is a woman in her early 40s, who is the mother of two young children, who also works part time as a lawyer a few days a week.  She’s been trying to keep up with her days in the office through her treatment.  I think this was a source of frustration for my colleague, because he can see her getting so close to being done with the worst of it, and does not want her to make any moves that jeopardize her health any further.  Which I get, and makes all the logical sense in the world. But then I think about it from her side.  She does not seem the sort of person to sit around and feel sorry for herself. She’s trying to keep herself and her family going as though nothing is really wrong.  It’s exhausting, but I don’t blame her.  She’s being the ultimate fighter in trying to go along in the “business as usual” mode.  With all of that, something he said made me think that she is still looking for a little bit of leeway and understanding because of her current health problems.  And I’ve gone through this – by pushing yourself to be strong and do more than is medically recommended, you somehow give up your rights to people treating your illness with any amount of sympathy (when really, they should be giving you more).  Instead of saying, “Wow, amazing you came in two days this week when you probably feel like shit! You should commended!”  It is more often, “If you came in two days, you can probably swing a third, right?”  The strong people are put in a position where they don’t want to say, “No, I can’t do that.”  So, they end up doing it, to the detriment of your their health and well being. This has as much to do with not admitting their own health shortfalls to themselves as it does succumbing to the pressure to “do it all” (totally overrated, in my opinion).

I have health problems. I have a long history of not making a big deal out of it because I hate attention, and I especially hate attention for that.  But, the fact remains that I have APLS, an auto immune disease that causes blood clots, which means I will take blood thinners for the rest of my life.  I also have a mild case of Lupus, another auto immune disease, that took the life of my aunt a few years ago. I have an uncle who also has it.  It’s something I don’t think about, or at least try not to, because it’s upsetting and I’m not a point where it affects my everyday life, so I have the luxury of not having to think about it. I take my medication, and then live my life as if nothing is wrong.  That is a huge dose of denial on my part, because there are some serious things wrong. But that is my coping mechanism and it’s how I’ve always gotten through life. Psychologically healthy? Probably not, but it works for me and I’m still here and relatively sane, so I’ll keep moving along.

Part of having auto immune diseases is taking care of yourself. This is no joke.  If you let yourself get run down, your diseases flare and bad things happen.  I make sure I get plenty of rest. I work out. I eat a really healthy diet.  I am vigilant to the point of obsession about such things because I’ve had some pretty serious flare ups and do not care to have them again if I can help it.

I don’t like talking about my diseases. Hell, half the time I don’t even like acknowledging that I have them.  But because I look healthy and act healthy and pretend that nothing is wrong, most people around me are happy enough to do the same.  So it makes it increasingly more difficult to stand up for myself when I need to say, “Hey, I need to take care of myself right now.” It makes me feel like people think I’m being a hypochondriac or a big baby.

I came down with a pretty nasty cold this week, and while it has affected half of my office and most of my colleagues are staggering around the hallways like snotty zombies (which infuriates me, BTW), I took two days off. I feel like they all think I’m a loser for doing so.  But I have no choice.  An afternoon napping on the couch when I’m under the weather makes all the difference in the world – not only for the current ailment (I guarantee my cold will be gone more quickly than these crazies who insist on coming in looking like death warmed over), but also to make sure my overall health doesn’t start slipping in a way that could cause me to have a flare up of something much worse.

The worst part of all of the disease thing? It’s the tiredness. Everyone is tired these days.  People have too much on their plates, stay up too late and get up too early. If they have kids, they’re up with the kids half the night. I am tired because my body is constantly fighting against itself.  I need more sleep than the average person, and  if I don’t get it, my health falls apart. That is another difficult thing to try to make people understand. When I’m tired and say something like, “I’m exhausted,” it’s usually met with a response like, “I’m tired too! I was up until 1 watching TV last night!” Which is annoying considering that I’m tired despite going to bed at 10:30 and waking up at 7.  One of my clients, an amazing and inspiring woman if ever there was one, has MS. She’s probably in her late 50s/early 60s and has more on her plate than anyone I’ve ever met. She’s incredible. After my last diagnosis, we spent some time on the phone. She’s the only person I know who truly understands what I’m going through.  I talked about being tired, and she summed it up as “bone-crushing fatigue.”  I can’t describe it any better than that.

So, no, I don’t want people fussing over me or treating me like I’m fragile and about to fall apart. I just wish there was a way to impress upon people the severity of my situation so that they would be a little more understanding when I need some rest or down time without me having to ask for it or point it out all the time.   I don’t want to be that person.  It’s awkward and inconvenient enough to have to deal with this stuff without having to explain it to people all the time. That puts me in quite a conundrum.  I think I’m too tired to figure out the answer right now.

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I work in one of those corporate cultures where people are married to their jobs. My bosses and many of my colleagues clearly prioritize their jobs above their families and social lives, and many people are here until 7, 8 or even 9 o’clock at night.  I refuse to do this.  I think my health problems have given me a different perspective, and also, I will never love a job enough to put it above the things that are important to me, like being with my family, friends and loved ones.  I work to live, I don’t live to work. My job is what allows me to get paid a decent salary to do the things I want to do outside of here. It also provides me with awesome health benefits, which is paramount because of my health problems.

It is the norm for people here to come to work when they are sick. My two bosses do it all the time.  It permeates the culture, and becomes the example they set for the rest of the team. Like, what we do is so important, even if you are on your deathbed, you better get your ass into work (for the record, what we do is NOT very important at all; we do promotional movie tie-ins. No one dies if I do a bad job or take an afternoon off to get better).  This has affected me negatively in two specific instances:

1) After my stroke last year, I was recovering at home and on disability, and got pressured to return to work. This was in private. When I panicked and went to HR, they sat me down with my bosses who put on phony faces and assured  me, “Oh no, your health comes first!” But the damage has been done. I know they don’t care about my health as much as the care about me sitting here between the hours of 9-6 every day. Also, I had been working part time, and working the rest of the time from home – which my doctors had even advised against – and it still wasn’t enough. I will never forget that.

2) With an auto-immune disease, you have a harder time getting over illnesses than the average person.  Right after last Thanksgiving, I came down with the flu. I was supposed to travel to northern California for a day trip to meet with one of my partners, and I just couldn’t do it. I was so sick. I tried to come in for a few hours at a time to prepare for the meeting for my boss and assistant who were covering for me, spraying my office down with Lysol and using Clorox wipes on everything I touched.  After the meeting, which, from what I heard, went off without a hitch, I got a stern ‘talking to’ from my boss that started with, “I know you can’t help getting sick, but…” and then she tore into me for not being prepared enough.  I was a loss of what to say – I had the flu!! What was I supposed to do?

When I was coming back from disability, one of my bosses was coming into work every day even though she had walking pneumonia. The other boss seems to get sick with some kind of respiratory thing at least every 3 months.  Of course, she still comes into the office when she is like this, which makes me want to scream. If she’s going to be such a hard ass about me being sick and needing time to get better, then it would be nice if she wasn’t the one getting me sick because she doesn’t know how to stay home and take care of herself.

Besides just me and my problems, I’m pretty sure no on else who works here wants her disgusting germs. This is how epidemics happen.

This whole issue has taken on a much greater proportion for me right now because one of my colleagues has a wife who was just diagnosed with breast cancer. She had surgery a few weeks ago and starts chemo on Monday.  So they expect him to sit here all day while they cough and hack and spew their disgusting germs, and have him go home to his wife who has a compromised immune system? It defies all logic, intelligence, and basic human courtesy.  Can you complain to HR about something like this? Because I just might do it.

If you ever wonder why I insist on keeping my blog anonymous, this entry is a prime example of why.

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The title of this post comes from an episode of Charles in Charge. Yes, the sitcom from the 80s starring Scott Baio.  I don’t remember the set up of the scene, I just remember it was something his crazy mother (played by John Travolta’s sister) said to him as way of giving advice in the most befuddling way possible. It made me laugh at the time, and I like to quote it still, which makes people look at me like I’ve lost my mind/am retarded (either scenario being completely possible).

Because of my health issues, I need drugs. To get drugs, one has to go to the pharmacy. I’d been going to a CVS pharmacy in Burbank for years, mostly because it was close to my hospital and doctors’ offices, and was generally convenient.  I’m not sure what has been going on over there, but it is always a zoo. I think a few smaller pharmacies in the area closed and all of the clientele were transferred to this place.  The line to pick up prescriptions is always at least five people deep, no matter what time of day (I’d go mid-day during the week and stand in the same line).  If you call in a refill, it is hardly ever ready when you request it.  If you need them to fax an authorization request to your doctor, you may as well pick the request up up and drive it to your doctor’s office in person, because that task has as much of a chance of being completed as I have a chance of winning the lottery and being crowned Miss America. On the same day.

Since my bigger health issues a year ago, I’d been dealing with the aggravation of this pharmacy for almost that entire time. Sick of listening to me bitch about the same thing over and over again, my boyfriend finally convinced me to cut the shit and just transfer everything to a Rite Aid that is fairly close to my apartment.  My life improved immediately.

Rite Aid has a 15 minute wait policy for prescriptions, so if you drop something off, you never wait more than 15 minutes before it’s ready.  If you call something in ahead of time, it will be waiting for you when you get there. I have two different prescriptions for my Coumadin because I take two different doses.  Once, I was almost out of refills on one and asked them to contact my doctor for an authorization.  I hadn’t realized that my refill on the other one was also almost up, but they did and took care of it for me. When I went to pick my prescription up, they had both waiting for me.  They saved me so much time and aggravation, I’m not even sure I properly conveyed thanks because I was in such shock.  People are never this helpful anymore!

I went there again just this afternoon, because they had been calling me leaving messages to let me know that I had a refill waiting for me. I never called it in, they just knew.  I thought it was just one, which made sense, and then I realized they had two because they actually anticipate what’s coming up and fill it as soon as the insurance lets them.  I was further impressed when, at the check-out, the woman asked for my last name, and then said, “Oh,” and then said my first name. She remembered me!  I would spend a collective 3 hours a week at the Burbank CVS, pacing back and forth in front of the pharmacy counter, and no one ever remembered who I was.  It fully cemented my love for this place.

My mental love fest with Rite Aid was almost shattered when it became impossible to ignore the woman at the register to my right. She was railing on the three pharmacists  working there, because they apparently made a mistake and gave her the wrong medication.  They were very apologetic and seemed like they were behaving professionally, but she was having none of it.  I believe her parting words were a very loud and petulant, “I’m going to tell everyone I know not to come here!” before she turned and stormed out of the store.

My first thought was, “if she thinks these guys are bad, she’d never survive at the CVS in Burbank!”  And then I thought of my favorite line from Charles in Charge (shut up), and how much it rings true (again, shut up).   This lady’s personal hell has been my saving grace.  More idiotically put, her floor is my ceiling.

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It’s like some sort of nightmare – it’s 2012, the economy has been in the toilet for the better part of three years, and birth control has become of the hot button issue of the upcoming elections?!  I cannot stand the Conservative Right for their diversionary tactics (among other reasons), but this one has gone way too far.

I am really not a political person. I barely even know what’s happening in the world politically – and if I know anything, it’s because I learned it from either Jon Stewart or Bill Maher (incidentally, I would very much like to go drinking with the two of them sometime).  But, being a woman, I take a lot of womens’ issues pretty seriously.  I am furiously pro-choice, to the point where I refuse to eat at In ‘n Out or shop at Forever 21 because they donate some of their profits to pro-life organizations. Seeing “John 3:16″ on Tim Tebow’s stupid face during Broncos games sent me into an inward rage.  How dare anyone – especially a man – tell us what we can or cannot do with our bodies?!

As if it needs to be said….”pro-choice” doesn’t mean “pro-abortion.”  It means you are for people making individual choices, for whatever their personal reasons. The government should not have a say in something so personal, especially in this country, where most of the opposition is steeped in religious arguments.

Besides the fact that I am a woman – and I think women everywhere should be as outraged about this as I am, whether or not they want birth control – there is a reason I take this so personally.

Just about a year ago, I had a stroke.  I have an auto-immune disease (APLS) that causes blood clots. It’s atypical that my first problem was a stroke, because this thing usually affects women, and they only ever find out because it will cause chronic miscarriages.  Women who are trying to get pregnant will miscarry over and over again, for seemingly no reason, until it is finally discovered that they have this disease. The blood clots somehow wreak havoc with the fetus, and it can’t survive.  To manage the disease, I take blood thinners (Coumadin); to manage birth control, I am on a low-dose birth control pill (a higher dose would cause blood clots…you see the problem there).   You absolutely cannot get pregnant while taking Coumadin – it causes every sort of birth defect possible.  So, if I was not on birth control and got pregnant, I would have a defective baby with no real chance for survival in life. If I decided that having a baby was more important that being on blood thinners, I would probably die before making it to term, either from a stroke or a heart attack…or I would miscarry and it would all be for naught anyway.

I am a thirty-six year old woman in a long-term, committed relationship with someone whom I love.  But, according to Santorum and his right-wing asshole friends (really, Foster Friess?? An aspirin between the knees?! What the fuck?), I should not have sex at all because it is immoral.  Makes sense – Santorum is a crazy Catholic who home-schools his 7 kids and thinks that sex should be for procreation only.  Again, it’s 2012!!!  Where is this coming from?  I am eagerly awaiting the day when some prostitute  or sex worker comes forward and claims Santorum as her best customer – or similar.  No one lives as straight laced as he is proposing people to be – not even priests.  There HAS to be some sort of hypocrisy lurking behind all this.

We’ve come to expect this sort of ignorance from the Catholic Church (it’s ok, I was raised Catholic, I can say that).  But from someone who’s trying to be the leader of (arguably) the greatest country in the world? Well, that’s just frightening.

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My well-meaning mother recently got me a book of case studies on the auto-immune disease I was just diagnosed with (APLS).  The case studies are about one to two pages each, so it’s generally a quick read and mostly informative.  The idea behind the collection is that the doctor who discovered this thing, a Dr. Hughes from London, thinks that it is much more common than people realize, it is often misdiagnosed as other things, and can be easily treated with blood thinners.

 All of this is seemingly good news. Still, reading this book has been really bumming me out.  I couldn’t put my finger on why, until recently. Reading about these other people reminds me that my life will never be the same. I absolutely have to have blood thinners and medical attention in order to survive. I don’t mean that to sound dramatic, but I did just read about a girl who was hiking through the Outback and dropped dead of a heart attack (in her twenties) because she had this disease, and was managing it with aspirin, not blood thinners, so she got a blood clot in her heart.

 This got me thinking…what if I am ever without blood thinners?  Will I have more blood clots and have strokes, or die of a heart attack or a pulmonary embolism?  These are very depressing thoughts, so I try not to dwell. But it did spark a very practical route of thinking, which was this: I live in the land of earthquakes, and God and the government only know how far away we are from a truly debilitating terrorist attack, and what about the surely inevitable zombie apocalypse?  Will I be able to survive without blood thinners?   I should have an emergency stash tucked away, in case something tragic happens and I can’t get more from the pharmacy.

 This seemed like a reasonable request, and as far as I know, Coumadin is not a controlled substance and it is probably unlikely you can off yourself with it if you had suicidal tendencies (there have to be more efficient ways to get the job done), so I decided to broach the subject with my hematologist.  As I’ve stated before, I absolutely love this man.  I know it is mutual, because he told me so (not in a creepy way).  Being a hematologist means that he is also an oncologist, so his day is consumed with very sick, often terminal, patients who feel and look terrible.  By comparison, I am the picture of good health.  So when I walk in there and tell him I’m concerned about the zombie apocalypse, I can only imagine that it brightens his day a bit because I am relatively healthy and babbling about nonsense (for fun, not because I’m having another stroke).  It is probably a much-needed reprieve from the, literally, life-and-death issues monopolizing his time.

 This is how the conversation went today:

 Me: I had something I wanted to ask you. I’ve been thinking about having an emergency stash of Coumadin on hand. Because what if there’s an earthquake? Or a terrorist attack? Or the zombie apocalypse?  I don’t want to be a victim of Darwin if the zombies come, I’d like to have a fighting chance.

 Him:  Zombies?  I’m not going to say it couldn’t happen (coming from a respected medical professional, this should be a cause  of concern for all of you).  I’ll write you another prescription.

Me: Thanks. I’ll keep it with a Swiss Army knife and other supplies so I can fight off the zombies.

He chuckles as he writes out a prescription with his back to me.

Me: On second thought, if I’m going to be fighting zombies, I might need a better weapon than a Swiss Army knife.

Him: Yes you will.

So, over the next few weeks, I will be getting more Coumadin, investing in a strong box (or two – probably best to keep one in my car) and perhaps a shotgun or a trident so that I am prepared for all eventualities.  My life will never be the same for sure.  It’s frustrating to have to consider things that most people don’t have to worry about.  But, with some pre-planning and ingenuity, I think I’ll figure it out.

Oh, and I’ll keep you all posted if I hear anything more about the zombies.  But you’ll need to bring your own weapons.

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Because of all of my ridiculous health issues, I spend a lot of time at the lab having blood taken out of my body, and at doctors appointments talking about what happened with the blood taken out of my body.  Conveniently, most of this can be attended to in one giant medical plaza in Burbank, across the street from Providence St. Joseph’s Hospital.  The medical plaza is fairly new, and pretty much every doctor in the area who is affiliated with the hospital has moved their practice into one of these four buildings.  Predictably, it is generally a zoo around there and a mecca of old people driving cars that are way too big for them.

This morning I had an appointment with my hematologist at 9 AM.  His office is always nutty and you end up sitting around for a really long time (my new way to combat boredom: losing at solitaire on my phone).  As you might imagine, this makes me a little cranky.  Also not working with me: I had been out late last night so I’m really tired, have a little bit of a headache, didn’t have time to eat breakfast, or drink the massive amount of coffee that I typically need to get my ass in gear on any given day.  The quick pit stop at the coffee cart in the plaza yielded a pathetic excuse for a latte from a man named Nick that didn’t really cut it.  Also, being surround by old and sick people has started to really bum me out, because I don’t want to be either.

After my appointment, I made my way to my car and began the excruciating process of driving out of the parking garage. This is generally the world’s biggest pain in the ass because of the amount of old people who drive really, really slowly looking for a parking spot on the first or second floor (when there are hundreds available on the third floor), and the other old people shuffling to their cars from the elevator.  It is seen as bad manners to beep at someone with  a walker for walking too slowly, so it is a true exercise in patience getting out of this place.  This morning, as I was one ramp away from freedom, I spotted a car very slowly backing out of a parking space. It was clear that the driver could not see around the car next to him to know I was coming, so I stopped and waited for him to pull out.  The car was some sort of Ford sedan, driven by a man who had to be at least 80 and was going about -1 MPH.  However, he had a license plate that read “MR VIBES”.  I will forever wonder what the significance of that license plate is related to that very old, very slow man.

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Today I was thinking about evolution.  This is partly because of some of my own recent health drama, and also because I’ve had a lot of time off work lately and have been watching too much Planet Earth.

My health drama is a tale of auto immune disease (s).  Having an aunt, uncle and mother with Lupus, my family is no stranger to auto immune diseases.  Back in 2002, when I was preparing to leave Boston for graduate school and the sunnier climate of Los Angeles, I had the first serious health issue of my then twenty-six year old life.  I’d had a horrible stomach ache for days – I literally couldn’t eat or sleep. I was living at home with my parents at the time, and my mom came into my bedroom one night to say, “This is stupid; we need to take you to the hospital.”  Normally, I would have argued with her, 1) because I hate to be fussed over and 2) I am prone to disagree with my mother on principal. But, at that point, the pain was unbearable and I was exhausted, so I didn’t fight it.  At the local hospital’s ER, I ran into a girl I went to high school with, who was a nurse there. This should have sent me running, but again, I was in no state to protest anything.  They did blood work, shot me up with some Demerol, and admitted me to run tests, the whole while with this girl saying things like, “That’s your gall bladdah!! You’re gonna have to have surgery!”  She was really irritating, but after the pain killer set in, I faded into blissful oblivion, the first time I was able to sleep in three days. I’d never been admitted to the hospital before. The next day, they started a litany of tests, most of the time everyone thinking that it was, in fact, my gall bladder that would need to be removed because that’s where my pain was. But an odd thing happened. Nothing showed up out of the ordinary in my gall bladder on any of my x-rays, and the pain eventually subsided on its own after a few days, but from my initial blood work, my platelet count was showing up to be unacceptably lower than average.  For the record, platelets are the part of your blood that help you clot.  A normal count is somewhere between 150,000 and 400,000.  Mine were at about 40,000.  Anyone familiar with the world of medicine knows that when your blood work starts coming out funky, it can many any number of bad things.  So, cue even more tests, which led to the conclusion that I had an auto immune disease called ITP or idiopathic thrombocytopenic purpura.  ITP is a diagnosis of elimination, and you start to feel like you are living in an episode of House.  No one knows why ITP happens, but essentially, your body gets confused and treats your platelets as antibodies (like an infection) and starts killing them off.   At the time, the best way they could fix it was to put me on a massive dose of steroids (i.e., Prednisone) which did the trick.  However, Prednisone is a serious drug with some pretty evil side effects, so the next nine months of my life were no party.  They had started me on 100 mg (unheard of) and had to slooooowly taper me to zero over that entire time. But, I figured it out, and it started me on an endeavor of a fairly healthy life style (eating well and working out) that I still try to maintain.    I was actually fine and with a steady platelet count until early 2007. It was right after Christmas when I noticed petechiae covering my legs and feet.  This is a sign of a low platelet count – petechiae look like tiny red freckles and they are essentially burst blood vessels below the skin.  I went to the local Urgent Care, where they sent me for lab work; the lab lost my blood and I had to have it re-drawn. This whole ordeal took days, and the conclusion was that the doctor from Urgent Care called me personally on every number I had left them to tell me, “Your platelet count is 10,000.  Get to the ER as quickly as you can and don’t get into an accident.”  I ended up being admitted and was in the hospital for almost three weeks while they ran more tests (including a bone marrow biopsy – ouch).  During that time, my platelet count fell as low as 6,000 and I had a few transfusions of platelets and an immune globulin treatment called IvIg.  It took a good week for that treatment to kick in, and they almost removed my spleen (in some ITP cases, a splenectomy will actually cure a person of ITP since the spleen is often the culprit that is killing the platelets). I was freaking out and really not wanting surgery when I got the call from my doctor saying that my platelet counts were finally going up and I didn’t have to have the splenectomy. Phew!  Since that time, I have been monitored by my new hematologist, who is, hands down, the best doctor I’ve ever had. I LOVE him.  He’s the head of the Oncology/Hematology department at the hospital where I was admitted.    He just happened to be on call the night I went to the ER and took an interest in me and took me on as a patient – and he doesn’t normally take new patients because he’s so busy. But he’s like a dad and I know he truly cares about me and how I’m doing.    At any rate, all had been fine for years. I was down to seeing the Hematologist only once a year. I’d just had my annual appointment with him at the beginning of this past March and had a good report.  My platelets, which always run on the lower side of normal, were 141,000, which is perfectly ok for me. All was well!

Fast forward to a few weeks later.  It was a Tuesday night and I’d just gotten home from work. I ate something for dinner and was puttering around my apartment when I had a bizarre buzzing sensation in my head, followed by double vision. It was like someone hit a button and my head short circuited.  It was pretty freaky, and unsure of what else to do, I went to bed.   This probably seems like the stupidest possible reaction/solution, which I will readily admit it was, but in my defense, I’ve been really overdue for an eye exam and new glasses, so I figured it was just really bad eye strain.  I called my good friend in the morning (when I still had double vision) and she took me to the ER. The doctor (an A-hole) didn’t do an MRI, or a CT Scan, or admit me. He sent me to an ophthalmologist after getting me an appointment for four hours later that day. I went to see this woman and she did some tests and determined that I had to have an MRI (are there classes in medical school on How to State the Obvious?). I waited for my insurance to approve it and went to have my MRI two days later.  I am seriously claustrophobic, so I asked for an open-air MRI.  I’d managed to get this far in my life without ever having an MRI, so I didn’t really know what to expect.  I lied down and the x-ray tech put a metal thing over my face and I immediately started to cry.  She said, “Oh no, you’re already crying.”  And then she told me I could come back a different time and they could dope me up with all sorts of drugs. However, after having waited a few days just for this initial test, I decided to suck it up and just go for it.  At one point, she said over the microphone, “You’re doing really well! I didn’t think you were going to make it.”  But I did. After, she instructed me to sit in the hallway outside her office where she got on the phone to the radiologist and said, “I have a thirty-five year old patient,” then said my name, and then said, “There’s something in the MRI that looks like a tumor, but it’s lighting up one way but not another.”  Horrified, I just sat there.  I went to the lobby and waited for my boyfriend to pick me up. At one point, the tech walked by and said, with fear in her eyes, “Oh no! They already called you back in?”  And I said, “No, I’m just waiting for my ride.”  And she looked very relieved with that answer, which didn’t make me feel any better. I had to wait through the weekend for a follow up ophthalmologist appointment to get the results (the MRI was on a Friday), so I spent a few days agonizing over what the MRI would actually say and hating that woman for not shutting her door.  In the mean time, I went and had my taxes done the next day, a Saturday (only to find out that I owed money – bullocks!), and my boyfriend came over that same night. The plan was to watch a movie and get some take out.  However, I was a bit off. And by “off”, I mean that I was having short-term memory issues a lá Memento.  I couldn’t remember anything that had happened over the past few days and kept asking the same questions over and over again; anything I could remember felt like something I had dreamed.  It was really disconcerting, and I think it freaked out my boyfriend, because the next day I was meeting some friends for brunch, and he kindly suggested, “Why don’t you have them drop you off at my place after?  I don’t think you should be alone today.”

Something that now strikes me as very funny but probably wasn’t funny at all for my boyfriend at the time was the Groundhog Day aspect of the scenario. Apparently, I kept forgetting about getting my taxes done and was asking, over and over again, “I had my taxes done?” “Am I getting money back?”  Then, I would say, “What?! I owe money?! How much?”  Later, my boyfriend said he had contemplated lying to me after a while because, “You got mad every time.”

I went to the ophthalmologist a few days later and was told that I’d had a stroke. I’m sorry, what?!  The last time I checked, I was thirty-five, not eighty-five.  This seemed really absurd to me.  I was too shocked to even be relieved that it wasn’t a tumor. The main conclusion of that appointment was that I had to see a neurologist, and getting in to see that guy was proving to be an act of Congress in itself.  In the mean time, I’d filled my sister in on what was happening. Her reaction was to book a ticket to come stay with me (apparently, I sounded a little batty every time I talked to anyone on the phone).

The next few days were a bit of a blur.  I was obviously not working but can’t really remember how I spent my time between doctor’s appointments. I remember that Elizabeth Taylor had died and that seemed to be on TV a lot and I was grateful I wasn’t driving to work every day, because my commute involves driving past Forest Lawn Cemetery, which I’m sure was a nightmare that week.  My boyfriend had some sick time and took a few days off towards the end of that week to spend with me. Those days were also a bit of a blur, but I remember that the weather was fantastic – the first warm summer-like days we’d had here.  I actually only vaguely remember the weather, but do remember commenting to my boyfriend, “It’s beautiful out!” and his response was, “Do you know how many times you’ve said that today?”  In my defense, it was an exceptionally lovely day (we still joke about that).

The day my sister arrived, she and I made grand plans of pedicures and sister bonding time, and she was going to come with me to all of my doctor’s appointments.  We picked her up at the airport and had a late breakfast. The rest of the day, she and I hung around my apartment while I made some follow up phone calls.  Then we headed out to a local restaurant for burgers. For some reason, at that point in the day, I was starving.  As soon as we sat down, however, my left arm started to feel weird.  It sort of went to sleep, as though I had been leaning on it, which I hadn’t been. I knew from my “What to look for if you just had a stroke” paperwork that this was not good news. I also knew that if I mentioned it right then to my sister, she would march me out of there and I would have to sit in the ER for eternity feeling really, really hungry.  So I waited until our burgers arrived, ate half of mine and then said as casually as I could, “My arm feels kind of weird.”  My sisters’ big brown eyes became even bigger and she gripped the side of the table and sort of half-shouted, “Don’t panic!”  Then she nearly tackled a bus boy looking for our waitress to bring us the check. We left there and hung out in the emergency room (where my sister kept cracking me up saying she was a “nervous pee-er” and running to find the bathroom, only to get lost every time) and ended up with a gem of a doctor who found the whole tale of woe to be as absurd as we did.  His conclusion:  “I hate your insurance. They’re the worst. You need to have a lot of tests done, and the only way we’re going to get around this is to admit you and run them all now.  You’ll be out of here by tomorrow!”  At that point, it seemed like the best, most logical thing anyone had said since this nonsense had started.  They ran a few tests that night, and then brought me up to the Stroke Ward (surprisingly, at least ten times more depressing than the Cancer Ward), where I would spend the next five days.

A few days later, my very worried and overbearing parents showed up to smother me with love and anxiety.  My sister tried to convince them not to come out, but resistance was futile at that point.  She said, “I’m so sorry. I tried.”  This was also the first time my parents were going to meet my boyfriend, the first relationship I’ve had since my divorce.  My parents can be a little bit antiquated and out of it sometimes, but I have to say, they were very supportive of me through my divorce and have done well convincing me that they mean it when they say they just want me to be happy. Still, I’m sure it’s a little weird for everyone involved.   Also weird and quite unfortunate was the first meeting.  In hindsight, it wasn’t so bad, but I was half asleep at the time so I had been wishing I had more control over it.  My parents arrived on a flight that got them in at midnight local time, and then they took a Super Shuttle to my apartment, a place they’d never been before.  They got to my apartment at 1 AM, drank a bottle of my wine, and then got up at 6 AM to get the hospital bright and early with my sister. After a week of being here on her own, my sister was “in charge” and getting a little drunk with power. Apparently she told them, “I have a routine. There is no time for coffee.  I leave here at 6:30 on the button, and if you’re not with me, you have to find your own way there.”    On this particular night, my boyfriend, who was wonderfully sweet and supportive throughout this entire ordeal, had stayed with me through the night. On a few nights, he curled up in the bed next to me until I fell asleep, so I wouldn’t be alone.  He would usually get up and go home at some point in the middle of the night, but on that night, he just happened to stay the entire time.  Unfortunately, we were awoken by my parents and my sister barging into my hospital room at 6:45 in the morning….and that was how I had to introduce my parents to my boyfriend.  Of course, we were both fully dressed and in a hospital bed, so it’s not like anything was going on. And even if it was, I’m an adult for crying out loud!! Still, it was awkward. They all handled it well, but I had been hoping for better circumstances than that for a first meeting. Although, I have to say, I think my parents just generally found the whole thing endearing. I can only imagine that when you have a child who lives far away (no matter how old), and is going through something traumatic, if you can’t be there, you just want to know that they have people who care about them who are close by.  So the unfortunate first meeting may have been most fortunate after all – they left loving him. I’m afraid my mom may start texting him (I rue the day she got an Android and figured out how to use it) for no reason.

Over the next few days in the hospital, they proceeded to run all the tests they should have run over the previous week. CT Scans, EKGs, ultrasounds, etc.  It got out of hand with a Spinal Tap and something called a “TE Echo” which is a trans-esophageal echo, where they shove a camera down your esophagus to look at your heart valves from the inside. It was dreadful. I learned that, generally speaking, ultrasounds are the spa treatments of hospital tests. Compared to everything else they put you through, they’re almost enjoyable!    I had one ultrasound of my bladder and kidneys (after having been ignored by the system for a week, they all seemed to be making up for lost time with the amount of tests they were running).  By that point, I’d been in the hospital for a few days, and my sister and I were getting a little slap happy.  Ever since we were little girls, we’ve had that “sister thing” where we find something hilarious and get the giggles, even if it’s not funny to anyone else. After a point, all it takes is for her to look at me a certain way, and I will dissolve into a fit of laughter.  It is truly a gift, and I feel bad for any woman who doesn’t have a sister. Anyway, I’m not sure how I could have gotten through all that craziness without her there keeping me laughing.  When they brought me downstairs for the ultrasounds, she was standing next to me in the room saying something goofy, which made me laugh. The tech, a very sweet and earnest man named Brian, said, “I can allow many liberties while I’m doing these tests, but I’m afraid I cannot allow laughing.”  Suitably chastised, we each hung our heads and tried to avoid eye contact. Of course, it almost all fell apart when Brian said, “I’m going to have to have you roll over. I can’t get a clear picture here because you have a gas bubble.”  I bit my lip to the point of blood and squeezed my eyes shut because I knew if I even caught sight of her profile, I would have lost it.  My sister left the room for a moment, presumably to compose herself.  We are women in our mid-thirties and she is a mother of three, yet the words “gas bubble” will get us every time.  Sometimes it is the very stupid little things that help you keep your sanity in times of trouble.

The MRI they sent me for was also an MRA, and they focused on three parts of my body, with and without contrast.  It took two and half hours. When I got into the room, I hopefully and naively asked the Tech, “Is this an open air machine?” to which he ominously replied, “We don’t have an open air machine.”  And then he shuttled me into the tube. I immediately started to cry. My sister stood at the end rubbing my legs the whole time to help calm me down.  Thankfully, they started pumping me with Ativan, which made me doze after a while.    But two and a half hours!! Come on!!  I thought I was just being a baby because it felt that long, so it felt slightly better to know that I wasn’t just exaggerating in my own mind.

While I’m on the subject of things that really sucked, let’s talk about the TE Echo for a moment.  This is an ultrasound of sorts, but they have a camera that is attached to a very long tube that is shoved down your esophagus.  You have to be conscious for the process, because they need you to have a certain amount of reflexes so that you can swallow and help get this thing down your throat. From the moment they told me about this test, I was not ok with it. It sounded horrible.  But everyone assured me that I would be so doped up that I wouldn’t care.  In fact, I was even somewhat betrayed by my sister’s and my favorite x-ray tech, Sean. Sean was the guy who did all the bedside ultrasound exams and had done one of my heart (from the outside) just days before. For some reason, we both just loved him. He was on my floor a lot, and would stop in to say hello to us every time he walked by my room.  He popped in when he found out he would be the tech assisting the cardiologist during the TE Echo.  He was very casual about the whole thing, trying to convince me that I wouldn’t feel anything or even really know what was happening.  I believed him. After all, this was Sean, who we loved and trusted!

When the TE Echo began, there were about five people in my room: Sean, the cardiologist, and a few nurses. I was hooked up to all sorts of machines and they started pumping Valium into my IV.  I might be immune to that stuff, because I did not feel particularly relaxed or loopy.  I was apprehensive as they handed me a shooter cup of lidocaine gel that they told me to gargle with, to coat the back of my throat. To this moment, I maintain that it is physically impossible to gargle with gel, and it got all over my face and up my nose. Sean was standing next to me, trying to be helpful with this suggestion: “Pretend you’re shooting tequila!”  Not quite the same, my dear friend Sean, but thanks for the sentiment.  They put a plastic ring in my mouth to keep it propped open, at which point, I also lost the ability to shout anything in protest. So I tried to speak with my eyes.  This involved me trying to catch Sean’s attention by glaring at him.  He seemed to be strategically ignoring me.  My eyes almost popped out of my head when I saw the tube and camera, while they were casually dipping the camera in lidocaine gel.  At that point, if able to talk, this would have been my comment to Sean: “Dude!! Are you nuts?  You totally undersold this to me!!”  Alas, he was still steadily avoiding my gaze.  He had mad skills in that regard.  He must have a very nagging, pain-in-the-ass girlfriend or mother. Or both.  When they were done, I felt as though I had been raped in the esophagus and my throat really hurt. I think I fell asleep afterwards from all of the Valium.

A few weeks later, my boyfriend and I were taking a walk and I was lamenting this procedure. It was also right after I thought up the “raped in the esophagus” line and wanted to test it out. This is the conversation that followed:

Him:  You should look on the bright side.  If you ever lose your job, you will always have a future in porn.  Now you know you can deep throat.
Me:  But I hated it.
Him: But at least you can do it.

The TE Echo happened in the morning of what would become the most physically traumatizing day of my life.  The Spinal Tap (i.e., “lumbar puncture”) had been a few days before, and I had what is known as a “spinal headache” since the procedure. Apparently, this is common from a spinal tap or any kind of epidural. When you are poked in the spine with a giant needle, there are often leaks of spinal fluid afterwards.  This causes the spinal headache, and the only thing that makes a spinal headache better is lying flat and drinking tons of water (if these two things seem contrary, it’s because they are) to replace all the fluid that’s leaked or been removed. If you fail to feel better in a few days, it means that your spine is still leaking fluid and they need to do a “Blood Patch.” This is essentially an epidural of your own blood that they stick into your spine and, as my dad said, “it’s like caulking!” as they patch the leak with your blood. It’s a delicate procedure, performed by an anesthesiologist, and the timing of all the steps is very precise. From what I could gather it went like this: Step 1) Insert giant needle into spine; Step 2) Somehow find 15-20 ccs of blood and Step 3) use that blood in the giant needle for the blood patch.  It seemed that these things had to happen in exactly that order.  I say this because I, usually quite tolerant of pain and a model patient, almost had a breakdown. My head was pounding, to the point where I began crying and the anesthesiologist’s assistant started massaging the back of my head.  I asked if I could lie down until the last possible second, but the needle was already in my spine and I was cautioned not to move. Fearing paralysis, I assumed they meant business, so I didn’t argue (or move).    The nurses started to panic because, with me having been in the hospital for almost a week with a ridiculous amount of blood taken daily, they couldn’t find a vein that would yield the amount of blood they needed for the procedure. They began sticking me all over the place and there was blood everywhere (yet, stupidly, not enough in the vial where it needed to be).  I started to feel really nauseous and began sweating uncontrollably. I was hooked up to a vitals machine, and we all became aware that my blood pressure was rapidly dropping. I think I almost literally passed out from pain.  Luckily I fought against it and they were able to complete the process. I will say this – the human body is so weird. As soon as the blood patch was done, my head instantly felt better.  Like someone turned off a switch. I still had a bit of a headache, but I could actually sit up and function.  I was unexpectedly discharged that evening – and thank God!! I don’t think I could have physically handled any more tests after that Day of Days.

The upshot of all these tests and the hospital stay?  I had indeed had a stroke. In fact, I’d had a series of “mini strokes” due to 4-5 “mini clots” in my brain (the repeated use of the word “mini” makes me laugh – like they’re cute and little, like Mini M&Ms).  The reason for the blood clots? Apparently, I have a second auto-immune disease called APLS (anti phospholipid antibody syndrome).  Having one auto immune disease opens you up to the world of auto immune diseases – they tend to cluster together.  APLS causes blood clots.  Does this seem contrary to my ITP? Why, yes, indeed it does. As I said to my sister upon finding this out, “Are Mom and Dad first cousins?  I’m a Bleeder and a Clotter? What kind of genetic jack-assery is that?!”  Although, it’s actually entirely possible that I’ve never had ITP.  One of the symptoms of APLS can be a low platelet count (blood clots can absorb platelets).    The outcome? Blood thinners for a lifetime, which beats getting clots in your heart, brain, or lungs, but they’re not a lot of fun since they come with a plethora of dietary restrictions and it is recommended that you not drink alcohol at all while on them.  Anyone who knows me can probably guess how unacceptable I find this solution. But, again, it’s preferable to blood clots in my brain that cause strokes, or worse, in my heart or lungs, that could cause a more instant death. You do what you have to do in life, and it can always be worse.

I will now tie this extra long story back to my original musing about Darwin. Another symptom of APLS is chronic miscarriages (also, Coumadin causes gnarly birth defects, and if you are prone to blood clots, any type of birth control with hormones (i.e., most of them) is out of the question (another contrary and non-win aspect of this scenario)).  I find it interesting that my body will not let me procreate without some serious scientific intervention.  I am not supposed to add to the next generation – and why would I be?  I am riddled with disease!  It’s nothing so tragic that I cannot function, but also nothing that would help advance human kind from a physical standpoint.  I’ve never really had a strong desire to have children, but having the option taken off the table is a real bummer.  All I have to say is, my nephews and niece are super lucky because I will now spoil the crap out of them for the rest of my life in lieu of having my own children.  I wonder if they will ever acknowledge that or if they will just always think I’m weird.

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