Archive for the ‘The Health’ Category

So. This new medication.

I’m kind of torn. On the one hand, it has not helped my head a bit yet. It hasn’t help me sleep and I have like half of the side effects that are even possible on it.

Everytime I stand up from laying down or even reclining, I nearly pass out, I mean, nearly pass out to the point that I sometimes have to lay down wherever I’m standing to make my vision stop being totally black. It makes my hands and feet feel like they’re on fire with great regularity. It makes my stomach hurt a lot of the time and then there are other things that I’m not willing to type out because contrary to popular believe, I do have limits to what I’ll share.

But, in the 2.5 weeks since starting this medication, I feel a lot more sane. It is an anti-depressant, though that’s not why I’m taking it. I guess I shouldn’t be surprised that I’ve had fewer moments where I close my eyes and see myself or my husband die in a car crash, or our apartment explode into flames. I haven’t taken anxiety medication for almost a month now, which I cannot entirely attribute to the new meds, but I think it has played a part. I am just a generally happier version of myself.

The way I feel now is a really good thing.

But it’s also kind of a not so good thing.

I don’t want to take medication to be happy. I don’t want to have to take pills to not have episodes of crippling anxiety in public. I don’t want this medication to make me feel happy because it forces me to face the fact that I haven’t been happy for a while now. That I need pharmaceutical help to get back to a person that I used to know. That I need help.

And needing help kind of sucks.

I’m currently at 30mg of the medication and I’m supposed to get up to around 50mg at least and see if it helps my headaches. I don’t know if I can tolerate the side effects at that dose, but I am going to try it, because I promised I would.

It’s funny, because a few weeks ago, I was really afraid of starting this medication. I didn’t know what it would do to my body, how I would react, what unintended side effects it might have.

And now I’m kind of afraid of having to stop it, all because of an unintended side effect.

Last Monday, the first day of my clinical rotation, my clinical instructor told us about how she had been in the ER over the weekend. She was running a high fever and had these sores in here mouth that were horribly painful. Even two days later she was still taking strong narcotics for the pain, it sounded absolutely horrible. She assured us that she was not contagious and while I was skeptical, I shrugged and went on with my day.

I’m a pretty compulsive hand washer, so I really wasn’t all that concerned.

Yesterday morning I woke up feeling…off. Like I might have been catching a cold or like my allergies were out of control. The latter seemed possible since I was in Bakersfield and the allergens there are often a bit more intense than in our concrete wonderland here. As the day progressed, things got worse. I had a headache that was different than my normal, I had a sudden influx of snot. I figured it was just a cold, I mean, everything was pretty standard for a coming cold.

Until dinner.

I noticed something felt weird. Like a piece of food was stuck in my throat. I procured a flashlight and discovered that it wasn’t food at all, it was actually a blister on the back of my throat, which, at the time, I didn’t think anything about except that it was making me crazy, so, uh, I popped it. Gross yes, but it was making me crazy.

This morning I woke up feeling 100 times worse. Like a cold had settled in and to add to that, I had another blister in my throat, right near where the one the night before had been. And then I put two and two together.

And then the fever and body aches came and well, two and two equals four and also me being sick and kind of pissed off about it. It would seem that I have coxsackie virus, which is potentially the worst named illness ever, except that it appears that I have a subset of coxsackie called herpangina.

Herpangina.

Seriously. Because having sores in my throat and on my face, a fever, a headache and body aches are not enough. I also need to have my husband constantly taunting me about having an STD, which I don’t even have.

I can’t wait to call in sick to my clinical tomorrow. Oh, hi, I’m not coming in because I came down with that totally non-contagious thing you had all last week. WHAT A COINCIDENCE.

Sigh.

Sleep. It’s apparently not for everyone.

It started as being able to fall asleep without issue, but waking up five and six times a night. Some nights were better, others worse. Nights with especially painful headaches were usually the worst, but sometimes the not-so-painful nights were equally crappy. There never seemed to be a rhyme or reason.

My neurologist (last fall) suggested a sleep aid. It was echoed by friends who had had good success with it, so last December I started taking a pill each night before bed. And some nights it made me genuinely sleepy and then I actually woke up somewhat rested. And other nights, it was almost as if I hadn’t taken anything at all.

In the past couple of months, there’s been a new twist to the sleep nightmare (see what I did there?).

Suddenly, I’m not able to fall asleep. I lay awake for hours and hours. I try not to watch the clock because that only makes it worse. So I lay in bed, keeping my eyes closed, knowing that precious hours of sleep, hours that are already hard to come by, are slipping by.

When I went to see Dr. Yourprovider last week, they realized that this was a big issue. And honestly, it is often as big of an issue as the pain itself. It is impossible to heal, to feel better, without rest. So they want me to get off of the sleep aid and start taking a medication that doubles as a headache prophylactic and a medication that will make me tired enough to possibly sleep.

So I started the medication last Friday, as requested. I also started tapering down the sleep aid (because after 10 months, going cold turkey would be a hot mess). And dear God, this has been among the crappiest weeks of sleep ever. I honestly think I’ve spent more hours awake than asleep.

I am so freaking tired.

I feel like I’ve been hit by a truck, several actually. I want to sleep all the time, but the great catch 22 of this is that if I do rest during the day, I sleep even less at night. Which hardly even seems possible.

I’m not giving up on the medication yet. It hasn’t done much, but I’m only on 10mg and the dose they want me on is 50mg, so there’s still hope, both sleep and headache-wise. But seriously internet, I’m so tired I could cry. I need to know that it is going to get better and that sleep will find it’s way back.

Because I’m seriously losing my damn mind.

And there isn’t really enough left to fool around with at this point.

(FYI, there are so far, only 16 entires into the giveaway on my review site. And it’s kind of a kickass prize. Go, read, comment. Seriously, go.)

So. 7 weeks of waiting. It has been a very, very long 7 weeks. And 7 weeks of doubting that there was a doctor waiting to see me.

But there was.

(And for the record, his name was Matthew and his last name was alarmingly close to what I heard them spell out on the phone. It turns out, he’s not listed on the website because he’s a resident. So I’m not crazy, for once.)

He met me in the waiting room, only about an hour later than my appointment was scheduled and 2 hours later than when I arrived (no traffic for once). We did the small talk stuff, then we dove into a really, really thorough neuro exam which started with a game of “repeat the numbers after me” which I failed after the got to 7 numbers. An auspicious beginning.

Then we went through reflexes, poking, prodding, muscle strength, coordination, walking, etc etc etc. And by and large, I’m pretty freaking normal. He was really unconcerned with my opening pressures from the lumbar punctures, which kind of surprised me. I mean, they’re not earth shatteringly low, but they’re not normal for sure. He was generally kind of one of those underwhelmed people, which I suppose is a good quality in a neurologist.

So after he finished everything he went and got the attending physician. They looked over some MRIs of mine and were ready to talk.

Unlike the resident, the attending was quite concerned about my pressure. He thinks that it has to be playing a part. We’re essentially back to the theory that I must be leaking spinal fluid somewhere, which I’m not sure I agree with, but I’m willing to entertain the possibility or at least do the testing (which requires zero needles into my back).

So that’s what we’re doing. We doing a new brain MRI with contrast and they’re having it reviewed by a neuroradiologist who is going to look for some very small and subtle changes in my MRI. And then we’re playing with pills.

I’m going to be taking a prophylactic medication that I took a few years ago but discontinued because it gave me wildly painful parasthesias (tingling, numbness, burning) in my hands. We’re going to try it again, starting a little slower, easing up. It’s doubly useful because it’s taken at night and should make me sleepy which was a big point he made with me today. They’re concerned that lack of sleep and stress are major contributors and that they have to be tackled before this’ll end. So this medication will help me sleep and might potentially help the pain.

They also gave me a fast acting med for when the headaches are completely debilitating, which I will hopefully not have occasion to try soon, but will if necessary. They also want me to eat better, exercise more and continue to stay well hydrated. And finally, they want me to get acupuncture. Which I am still incredibly skeptical about, but the facility they’re referring me to is comprised of doctors who are trained in Eastern Medicine, so I’m willing to give it a go.

And now we wait and see. The appointment was good, and I really like the doctors, but I’m not thrilled about sticking to the low pressure theory. I really think I’m going to get back a completely normal MRI and then we’re going to be chasing the same deserted path that we’ve chased several times before. I think we’re going to take several steps backwards before we take any forwards, and though that it is frustrating, I know it’s part of the process.

You know, patience is a virtue and all that crap.

But these doctors are committed. They have explained that this is a process, one that will take time and energy and doctor’s visits and phone calls. We’re going to play with a lot of meds and a lot of alternative treatments to hopefully find something that at least helps a little.

I’m grateful that the wait is over, I’m grateful for good doctors who listen and work with me. And though skeptical, I’m hopeful that we’re on the right track. Even if it’s one we’ve gotten horribly lost and stalled on before.

Who knows, maybe this getting lost is the first step to being found.

(And for the record, I did proofread this, but I’m running on very VERY minimal sleep, so I’m sorry for all the typos that I can’t see now. I know better, I really do.)

The more this happens, the more I wonder if this is real life, because, dude. Come on now.

I got another call from You See El Aye today. They needed my insurance number, which they already had, but uh, they needed it again anyways (I’m seeing a concerning trend of miscommunication and confusion. I will probably fit right in there). I casually mentioned to the woman on the phone that despite calling them 2 weeks ago, I still have not received my pre-appointment paperwork. And I’m pretty sure that it’s fairly important.

So, first she asked me if I had a fax machine, which, no, I don’t. I can send faxes from my apartment complex’s fax, but I’m not sure they’d like to become my personal secretary and receive all my paperwork. I’m just guessing here.

And then she decided that I should just show up early for my appointment to fill it all out then. Which is not a problem. Except that seeing as how I haven’t gotten any information like I was promise and I have NO IDEA who my doctor is, I also don’t know where I’m supposed to be going for this appointment. It’s hard to look up the doctor’s office when you don’t. have. a. doctor.

She told me to hold on for a second while she looked up the information.

She came back with an address and some helpful parking tips. And because it was the perfect opportunity, I asked her which doctor I would be seeing.

And as if on cue she responded, “huh. I don’t know. It’s not listed in the information I have.”

Of course it’s not.

Honestly? I’m almost more excited about this appointment to end this mystery than I am for the potential of getting my headaches sorted out. Almost.

The saga of not knowing which neurologist I’m seeing continues.

Before you ask, no, I haven’t called (again) to find out who it is (again) because I just feel like a crazy person being all, hi, uh, I have an appointment on Thursday but, uh, I don’t know which doctor I’m seeing (again). You know? It’s like, I just made an appointment on a whim (oh wait, I did) and normal people don’t do that. I think. It’s hard to say what normal people do, with having absolutely zero frame of reference to speak from.

I totally thought my problem was solved last week. I got a call from You See El Aye to confirm my appointment for this coming week. The message was easily 5 minutes of nonsense, but I knew that there was a precious nugget of information coming because in the past 4 years I’ve gotten about 30,000 of these automatically generated robot calls.

“We are calling to confirm your appointment on Thursday, October 21st at 3pm with”

I sucked in my breath, ready to write the name down.

“your provider.”

Sigh.

Seriously. SERIOUSLY?

I mean come on now.

I’m starting to think that I don’t have an appointment with a real person at all. Or maybe his name is Dr. Your Provider. I didn’t think look that one up. Maybe his (her?) mom was just a really good planner.

I almost don’t want to know at this point. No doctor is going to live up to the mystery and hype of the past 6 and a half weeks of name guessing.

I realized the other day that, hey, it’s October. I’m not sure when that happened, okay, I mean, I am sure when it happened, but it snuck up on me.

On October 6th, 2009, I waited in a doctor’s office waiting room, nervously, with my mom and husband. I was called back to a small room, I put on a gown and was positioned on my side.

And then I had my first lumbar puncture (first and fifth for how many tries it took).

We left the doctor’s office with a beacon of hope. We found out that I had low pressure, that I had intracranial hypotension. We had a diagnosis and a theory on a cause. We had another test that would hopefully confirm our guess and lead us to treatment.

I know it sounds a little crazy, but I was so happy.

We had a preliminary diagnosis. We were told that it could be treated. And yea, I was scared and in pain, but I was hopeful. For the first time in several months we were on track to sort this out.

Then the next test that was supposed to show us the next step came back negative. The headache continued.

Then next test came back negative too, there were no leaks, but my intracranial pressure was even lower. It was getting worse, not better. The headache continued.

The next treatment didn’t work at all. The headache continued.

I walked out of my neurologist’s office a year ago thinking that we were at the beginning of the end of this. I remember the feeling of elation, of knowing that we were going to figure this out.

And now, a year later. The elation is faded. The hope is dwindling. The diagnosis is just a label. It hasn’t been a doorway to treatment. It hasn’t been a start of something better or a key to successful treatment. It’s just another diagnosis, another way to label this hell that can’t be solved.

I am frustrated. I’m tired of fighting. I’m tired of this life, of this roller coaster. Of thinking we’re on the right track only to discover that we’re stalled, we haven’t moved an inch and so much of life has passed me by already. I’m tired of it all.

I can’t imagine another year of this. I can’t imagine another year of not knowing what to do, of not knowing what’s really wrong, of not knowing the solution. I can’t imagine writing on October 6th next year to tell you that it’s now been 2 years and nothing has changed.

That sentence scares the hell out of me.

I don’t want more of these anniversary celebrations. I don’t want to wrack up more years of pain, more years of failure. I don’t want to realize that things have gotten worse instead of better.

I want the hope I had at this time last year.

I want to be better.

I want this to end.

It’s been 4 weeks since I was finally able to make an appointment with a neurologist. And it’s also still 3 more weeks before I’ll actually get to see one. This is me, side-stepping a long rant about the state of healthcare. You’re welcome.

In these past 4 weeks I’ve been living in a special circle of hell. The headaches are worse, they are worse for longer, they are impossible to relieve and sleep, which has always been a little tough to come by, is now more scarce than ever. To be fair I didn’t think I’d manage 4 weeks without seeing a doctor, but I have. And so while I say I’m not sure how I’ll manage waiting 3 more, I know that I will.

I just know that it’s totally going to suck.

I have had growing concern that something had gone wrong with my appointment since I hadn’t received any of the paperwork they said they were going to send me. And the last time this happened, it was because my appointment hadn’t actually been booked, so when I got there they had no idea who I was. And by the last time this happened, I mean the last TWO times this happened, because somehow I’m the most forgettable patient ever. Or I have a habit of hallucinating phone calls, which I’m not ruling out as a possibility.

So I called the office today. I was totally prepared to hear that they hadn’t scheduled an appointment at all, and I had my fighting voice ready. But to my surprise, they did actually have my appointment scheduled and the reason I haven’t received my paperwork is because in my registration they combined the Drive part of my street address with the apartment abbreviation. And sadly, I don’t live on North Drapt.

And while I was on the phone with them, I decided to ask which doctor I was seeing, since they hadn’t told me last time and I somehow failed to ask. What I heard the guy say was “Dr. Matthews” and I was ready to end the call and do some doctor research. But the guy on the phone insisted that he spell it to me. I thought it was odd, since Matthews seemed easy to spell. And then he started spelling.

And I swear to you that he spelled out the name Shtrahan.

Which is weird, because according to google, no one has that name. And on the You See El Aye neurology website, there are exactly zero Dr. Matthews and zero Dr. Shtrahans. And before I could ask him to respell it, the guy had hung up.

I couldn’t believe my luck. Today, I literally played a game of telephone. It’s less fun in real life, just in case you wondered.

And now I have 3 weeks to figure out which doctor I’m seeing. And to try to not lose my mind.

Join me, won’t you?

I’ve studied a lot about human behavior, but mostly physical behavior. I can give you a good idea of why your knee or hip hurts based on the way you walk or the shoes you wear. I can tell you how the body works with almost disturbing precision. It’s what I’ve been training to do, it’s why I’m in school.

But the mind is a mystery to me.

Tomorrow, in my quest to continue to understand the human body, I have to fight with the human mind. My mind, to be precise.

Because tomorrow my class is taking a trip to visit the ICU nearby to observe our role in the acute inpatient setting. We have had lectures on what to expect, what each cord goes to, what each beep and number represents. I can tell you pretty easily what the normal heart rate, respiratory rate and blood pressure are.

But I am terrified of seeing it.

Almost 3 years ago, I spent a day and a night in the ICU. I woke up from brain surgery in an ICU room to a nurse standing next to me, calling my name and telling me to breathe. Because for whatever reason, I kept forgetting to. Things were beeping, I was groggy, tired and scared. My family was there one moment, then I’d fall back to sleep and they would be gone. My now husband, then fiance, was supposed to be able to stay there the whole time (I mean, there has to be some perk of being a medical student at the same hospital, right?), but the nurse wouldn’t let him stay.

I struggled to wake up, to figure out where I was. I couldn’t tell if I was in pain or if I was just expecting to be. And then came the vomit. Except that since I hadn’t eaten anything all day (because of that whole brain surgery thing), I just retched, over and over and over again. I got nausea drugs, then more nausea drugs, and they did nothing. My nurse rolled her eyes at me when I begged, groggily for help, for something else to stop this. In the end, she gave me every nausea drug they had, and it wouldn’t stop.

My father held me hand and cried because there was nothing he could do.

After what felt like an eternity, we got the nurse, who was painfully unconcerned, to call my neurosurgeon to give me something to help me relax. They decided that an incredibly strong anti-psychotic med was the right choice, and to their credit, It worked. But when I woke up, my family was gone. I was alone. I was scared, confused. I didn’t know what time it was, if I was okay, what had happened.

All night I drifted in and out of consciousness, alone, the nurse on the other side of a glass wall that seemed like a mile away.

Finally, it was light outside, and I was able to keep my eyes open, to assess what was going on around me. I had oxygen in my nose, a very painful arterial line in my wrist, two IVs, a catheter and a HUGE bandage on my head. I was in the intensive care unit, because I truly needed intensive care. I was in a pretty severe situation, which up until that moment, I hadn’t even considered or realized.

A few hours later, I was moved to a normal room, with fewer needles and tubes and medications and well, the rest is history. I’ve worked really hard to forget that first day after surgery and tomorrow I’ll have to face it.

Just thinking about it makes my heart race, makes me panic. It’s silly because I’m going to observe tomorrow, I’ll be walking around, not in bed. The tubes won’t be coming from my arms or my face. And yet, I’m still terrified. I feel so unsettled, nervous.

I want to be rational, but this fear is pretty irrational.

I want to be in control, but it is entirely uncontrollable inside my head.

Maybe it’s silly. It’s just a hospital ward. It’s just wires, it’s just tubes.

It’s just scary.

Working with kids, you’ll often hear talk of super powers. They ask each other if they’d rather be able to fly or be invisible, if they’d rather be psychic or super-strong. Each power has it’s own appeal and downside, but I always picked invisibility. The idea of getting through life unnoticed was always appealing to me.

It took me a while before I realized the downside of invisibility.

Some people have obvious marks of illness, of disability of struggle. They wear their symptoms, their reality, their fights on their skin, their faces, on the surface. They face public scrutiny, but their symptoms are rarely questioned because they’re visible, they are quantifiable, measureable.

Others are fighting illnesses and diseases that cannot be seen. Diseases that hide in plain sight, that allow them to fit in by appearance. But diseases that have symptoms that can only be detected by specialized tests or machines, or sometimes, nothing.

Neither is desirable really. You never hear anyone ask if you’d rather be able to fly or live with a chronic illness, and I can guarantee that if they did, no one would pick the latter. And it’s not just because flying is awesome.

Invisible illnesses aren’t necessarily tougher than the plainly visible ones, but they are different. We look fine, hell, some of us (and by us, I don’t mean me), look good many days. If you saw me on the street on any given day (except maybe yesterday and today), I look like a normal 27 year old. You would never know that anything is wrong.

My scars are hidden, my symptoms are almost impossible to perceive from the outside. My illness is under the surface, hidden. My illness is subtle. It makes it easier to hide which is often really nice, but it also makes it tougher to get support, to get a proper diagnosis.

It’s hard to describe what it’s like to have invisible pain, to have invisible diseases. To feel like the world might end because of pain that no one else can see. That no one else even knows you’re experiencing. It’s isolating, it’s terrifying. And it’s only made worse by people who think that because you look fine, that you must be lying. You must be faking. To have people accuse you of talking about your pain for attention, or insinuating that because you can sometimes do things while in pain that you must be either exaggerating or lying altogether.

Just because you can’t see the problem, just because you can’t tell what’s wrong from the outside, doesn’t mean we’re lying. Just because you don’t understand something I’m going through, doesn’t mean it’s not real.

Today was the start of Invisible Illness Awareness Week. And in honor of this week, I have a challenge for you.

If we’re completely honest with ourselves, we know that we are all guilty of judging others by what we see at first glance. It’s human nature, it’s probably even “normal.”

But for this week, I want you to think differently.

I challenge you to not roll your eyes when a coworker tells you that she has to leave work early because of a terrible headache. Not even when you think she isn’t looking.

I challenge you to not assume that a friend is lying or being a flake because she is simply too exhausted and has to cancel at the last minute.

I challenge you to be compassionate, even when you think that someone is lying or exaggerating.

I challenge you to love instead of judge. To support instead of assume.

Do it for me, and do it for the millions of others who are fighting harder than you’ll ever know, than you’ll ever see.

Be kind, for everyone you meet is fighting a hard battle. -Plato