Archive for the ‘The Health’ Category

After a 4 month wait, I return to my neurologist tomorrow. When I was there in October he put me on a daily medication, gave me a fast acting headache medication, referred me to an acupuncture clinic and ordered an MRI, in addition to doing a full neuro exam. I was there for like 4 hours, I’m hoping tomorrow will be a little quicker.

The daily medication has been so-so. It does seem to have helped a little with the insomnia secondary to pain and looking at my headache diary, it may have slightly reduced the number of really awful days each month. In November I had 7 headaches of 7/10 pain or higher, in December it was 10, in January 8 and so far in February I’ve had 4. Still a lot of bad days, but maybe slightly fewer than before.

It was also responsible for the supremely obnoxious intention tremor, which while significantly better since I reduced the dose, is still noticeable with some fine motor activities. It has also done a number on my digestive tract, but I’m going to spare you the details there. On the extremely good side, it has made me SO much more level emotionally and so much happier in general. Even for all the bad side effects, I’ve been so grateful for how it has helped me cope with life these past 4 months, that might even be worth all the other crap.

The fast acting medication was awesome the one time I had a migraine. Otherwise it was kind of a flop. I’ll still keep it around for those rare (like literally twice a year) migraine, but otherwise, it’s just collecting dust. The acupuncture never happened because my insurance moves slower than chilled molasses and calling them to find out how things are going is never as simple as it should be. See also, lazy.

And the MRI. I had it done in November and I still haven’t followed up. There are 2 outcomes- everything is fine or everything is not. And the only logical way that it wouldn’t be fine would be if there was evidence of trauma from the low pressure and hey guess what? there’s NOTHING we can do about that. The other option is that my MRI was clean and we are firmly building our home in square one with no idea of why my head has hurt constantly for the last 18 months. Either way, the answer is, well, nothing. The treatment is basically shot number 27,000 in the dark.

And then there’s the other big worry in the back of my mind. I’m sort of afraid to speak up tomorrow about the dizzy/disorientation spells I’ve been having for a couple of reasons. Frankly, I can only have so many diagnoses and issues attached to my medical chart before I just give up and I think I might be rapidly approaching that point. But I also don’t want to mention it because I’m afraid of what it is. I’m afraid of finding out something else might be wrong and having to wade through the process of treating that too.

The bottom line of all of this is that I just want to be a normal 27 year old. I want to go to school, go home and worry about normal, sometimes silly, things. I want to be planning my future, one with kids and a job and all the stuff that I should be able to look forward to. I don’t want to worry about my brain, worry about a future that contains endless days of pain. I want simplicity in my life, and maybe this makes me ungrateful for all the good I have, but it’s still true. I’m tired, and I’m afraid that this appointment will only make that medical exhaustion worse.

I want good news for a change, but I also know the reality of my situation and the history of my pain. So instead I’m steeling myself for tomorrow and hiding that faint glimmer of hope beneath a facade of realistic expectations and desperate frustration.

So, I may or may not have mentioned that I have had a cough for an eternity now. I finally broke down and went to the doctor Monday afternoon before class because I could not longer just deal with the cough, fatigue, fever, etc. He looked in my ears, nose, throat and listened to me breathe and without hesitation determined that I had bronchial pneumonia. I was not even the slightest bit surprised.

He started telling me the things he wanted to prescribe to treat the pneumonia, including antibiotics, an inhaler and a cough syrup and I remembered that Slappy and I had already had a conversation about some of those because the inhalers I’ve used and every cough syrup in the world interact with my headache medication. So I asked the doctor and he opened up a computer program and started making that “hmmmm” sound.

He clicked through a few things and says, well, I’m not really sure what to do. He told me that all antibiotics interact with my headache meds, but that the inhaler and cough syrup don’t, so he wanted me to try those two things and see if my body could just fight it off and if it didn’t, I could come back Friday and he’d give me the antibiotics anyway.

Important side note: this doctor is regarded by most of the students as the dumbest medical doctor ever.

From what Slappy and I can tell using a pretty well respected medication program with an interaction checker, my doctor read the whole thing wrong. The inhaler and cough syrup he prescribed? Both interact with the headache meds. Like, screw up your heart kinds of messing with them. You can still take them together, but caution is seriously advised. But the antibiotic he was going to write for? yea, it doesn’t interact at all. It would’ve been fine.

I left the office in tears because I am so tired of feeling so crappy. I didn’t know what to do, so I went to class and called my husband on the way home. We decided that I’d stay home today and go see a doctor at my husband’s hospital who could hopefully take care of things for us.

So this afternoon I drove out to a doctor near my husband’s hospital, did the whole question asking, vital taking, breathing listening charade and guess what? I still have pneumonia. Only this time, I didn’t bother to bring up the issues with interactions and he prescribed antibiotics that do not interact, which is great.

Except that when I went to pick them up at the pharmacy I learned that the pharmacy had *just* run out of that antibiotic for the day. And because my doctor emailed the prescription, meaning that I couldn’t just take it somewhere else, and because it was 6:45 and the pharmacy closed at 7, I wouldn’t make it to a different location to pick them up. So I was, once again, without medication.

Sigh.

Have I mentioned yet how I just want to feel well again? Because I do. So much. I have almost completely lost my voice from the coughing, I’m not sleeping well and I’m just exhausted. And even though I should’ve been able to start antibiotics last night, instead, I’ll be waiting until after 3pm tomorrow.

Because the whole medical world is conspiring against me, I’m pretty sure.

I want to start this out by saying that I’m not writing this because of any one thing anyone has said to me, or regarding any specific incident. I’m writing it because I’m starting to see a trend that worries me and I don’t feel like I can stay silent anymore.

As I type these words, I’m in a considerable amount of pain. I have a stress letdown headache that is really, really ugly, a very sore neck and I’ve been really trying to cough my way into a 6 pack (so far, with minimal success) all week. In short, I really don’t feel good. But if you were to tell me that you had a headache, or you were sick, my only thought and only reply to you would be sympathy. I would be genuinely sorry that you hurt and I would offer you support in any way I could.

Because that’s what friends do.

It is irrelevant to me if your pain level matches, exceeds or doesn’t approach mine at any given moment. Because my pain doesn’t play any role in what you’re feeling or trying to cope with. My pain is a separate entity that cannot be compared to anyone else’s pain. And moreover, it shouldn’t be.

When a friend is hurting, physically, mentally, emotionally, spiritually, my job as a friend is to offer compassion. My job is to not ask you to compare yourself to what I feel or what another sick or hurting person feels. Doctors prescribe antibiotics instead of perspective for a reason- a dose of perspective does not change illness. It does not change pain, it does not improve mood. That’s not how it works.

Perspective is a good thing, but it cannot and should not replace compassion.

When someone is sick, asking them to gain perspective is the opposite of compassion. Comparing pain, comparing sickness, telling someone to suck it up because it could be worse? Is the opposite of helping.

And if you consider yourself a friend, then you should only be meeting your friends pain with compassion. Stop with the competition. Stop making others feel as though their pain is insignificant because it’s not the same as yours, or because you think it’s not as bad.

You have not walked a mile in my shoes or in anyone else’s. What may be a molehill to you, could feel like a mountain to someone else and those climbing mountains need a hand up, a comforting embrace much more than they need to compete with your mountainous hike.

And so next time you’re tempted to respond to a friend’s complaint or comment about not feeling well with a dose of perspective or a tone of competition, I beg you, stop. Stop and remember that we are all fighting our own battles and that these battles are not won by perspective, but they can be made much easier with a helping of compassion.

I finally had my meeting with my mentor yesterday during my long lunch break. My mentor is a wonderful teacher, is very good at his job and has been a wealth of help for me. Each time we sit down he gives me this look of…sympathy or sorrow because he knows all that has happened in the last 18 months. Sometimes that makes it harder for me to talk to him.

He asked me how my head was and I told him. In November, the medication really seemed to help, when I had to drop the dosage from the tremors, the headaches screamed back. I had 10 headaches that were worse than 7 out of 10 pain in December. One out of every 3 days I was essentially incapacitated from pain. And admitting that out loud is harder to do than you might imagine.

Later he asked me what my neurologist’s plans were and what the MRI had shown and honestly, they answer to both is that I don’t know. I have an appointment next month and while I got my MRI in November, I never bothered to follow up with it. I sort of assumed that if there was something hugely wrong, they’d call me. I said I would call, but I just never did. I don’t have any real excuse except that denial is a lot easier than reality.

In denial, I don’t have to think about what that MRI will show. In denial, I don’t have to acknowledge that one of two things will show up- it will be completely normal or it will show enhancements that mean that my brain is starting to suffer damage from the low pressure. And do you know what we can do if it’s the latter? Nothing. We can do nothing. There’s no treatment for having low pressure except all the things we’ve tried. I’m well hydrated, well caffeinated, and I’m not obviously leaking spinal fluid.

The MRI might show that the headaches are a consequence of the low pressure but it won’t tell us what’s causing the low pressure or how to treat it. Stepping out of denial means I have to consider the future, my future. This future.

My mentor looked at me when I explained the situation and said, “you mean, there’s nothing they can do?”

And I just nodded. Because it’s the truth I don’t want to speak, don’t want to face.

There’s nothing they can do. There’s no treatment and there’s no end in sight. I know that I do not face anything tough compared to others who are fighting for each day and I am grateful for all I have, but it doesn’t mean that I don’t need a little time every once in a while to grieve. To grieve a life I’ll never have. To grieve the loss of normal. To grieve a future filled with pain that cannot be helped, cannot be treated, cannot be ended.

I can live like this. I will live like this.

But it doesn’t mean I have to pretend like it’s what I wanted, or that it doesn’t suck.

This is not the life I wanted, not the life I planned for or the life I imagined, but hopefully I can soon crawl back out into the light and remember that it’s a life that I am blessed to have.

Some of you will remember that I caught some crazy virus in late October involving blisters in my throat. The person I was working with at the time had the same thing and I had several other viral symptoms, a fever and you know, the blisters. They weren’t so much on my throat as on my soft palate, for those of you who are anatomical sticklers, but they hurt rather a lot whenever I swallowed. Thankfully, the blisters and other symptoms went away within a few days and life returned to it’s relative sense of normal.

In mid-November, I got another blister out of no where. I didn’t have the cold symptoms, but I didn’t worry too much at the time. I just assumed that I hadn’t fully kicked the virus and that some level of repeat was normal.

And then at the end of December I got some crazy cold and guess what? THROAT BLISTERS. Thankfully as per the previous experience, they went away with the cold.

Last night you’ll never guess what happened again. Yep. Another damn blister.

I began to notice that the blisters were always in one of two places on my soft palate, but I couldn’t discern any other pattern. It wasn’t a food thing, it wasn’t really a sickness thing. It didn’t seem to be an environmental thing since each time they popped up I was somewhere different, but it also didn’t seem to be a travel thing considering that I didn’t go anywhere yesterday.

I was stumped. And also in pain. Because hey, having a blister in your throat is actually quite painful.

I did my very best to avoid excessively googling of said throat blisters, but I’m not even going to pretend like I was successful at that, because I totally was’t. But I managed to maintain relative sanity and though I had come up with a few possible diagnoses, I didn’t let the situation freak me out too much. Well, I mean as minimally scared as one can be with a blister in their throat. Did I mention throat blisters? Because I have them. And I’m not sure I’ve typed those words enough yet.

So I made an appointment and at 9:45 this morning I went to my doctor. He spent the better part of a few minutes staring at my throat and soft palate. He poked around a little on my face and checked my ears. His diagnosis was amazingly one of the things I had actually considered myself: canker sores.

Apparently I’m one of these really lucky individuals who gets canker sores in my throat when I am stressed or sick. The first time was obviously from being sick, as was the one in December, and the rest must be from stress. Which I think is crazy talk, I’m never stressed.

I asked about treatment and my only real options were to have him burn it off with silver nitrate, or get a mouth wash with lidocaine. I opted for neither. I would rather stick a burning match in my eyeball than have silver nitrate used on my throat. I’ve had silver nitrate on a different wound before and no. Just no. And frankly, being numb is akin to being on fire in my mind (I don’t know why it bothers me so, but it does), so I’m just going to tough it out.

He couldn’t give me any information on how often or how long this was going to go on for, only that he hopes it won’t be something I have to deal with forever and that it’s not contagious.

And I really hope he’s right. Because if I have this for much longer, I’m going to assume he is an idiot and lick him next time I see him. See how he likes canker sores on his throat.

I got an email in late December about meeting with my faculty mentor this week (or next) for our biannual check in meeting. Although, for me it’s usually biannual meeting plus 800 emails over the semester for all the 10,000 things my brain usually throws at me. And I was SO excited to meet with him on Friday because I had nothing to report. Nothing except my grades from last semester, which are totally respectable.

So obviously some shit had to find its way to a fan.

I was driving home from school Wednesday and after sitting nearly completely still for the better part of an hour, we were finally up to normal speed. I was three and a half miles from my freeway exit, zipping along at 70 miles an hour in the far left lane when out of no where I got hit with the most entirely debilitating dizzy spell ever. I don’t just mean like, oh, hey, I’m kind of dizzy. For easily 5 or 10 seconds, I didn’t know up from down, I didn’t know right from left. And I felt like I was losing consciousness or at least as though I was losing voluntary control over my body. It was as if I was completely paralyzed to do anything.

I’m not sure I’ve ever been so scared in my life.

I’ve only had this sensation one other time and it resulted in me actually coming alarmingly close to passing out in a hallway at school. It took over 2 hours for my heart rate to find it’s way below 100 that day, and it was blamed on dehydration. I can tell you with absolute certainty that I was not dehydrated yesterday. Not even the slightest bit.

When the dizziness abated and I was able to resume controlling my body at least a little bit, I was about a quarter mile from the exit before mine and I felt like there was no way I was going to be able to not pass out. I got all the way over, got off the freeway and parked my car at the gas station.

I reclined my seat, sipped some water and focused on breathing. Slowly. Air in, air out. Until my heart rate slowed and I felt like I could drive the few miles home on surface streets with relative safely. I made it home in one very upset, scared and anxious piece.

As the evening wore on, I didn’t have any more issues with dizziness, just a normal headache and normal weekday tiredness. I had thought, even maybe hoped, that the dizziness was a migraine aura, but then I had no increase or change in headache, so I can’t imagine that’s the case.

I made it safely to school this morning and was totally fine and then in the middle of the morning, I got a replay of the previous night’s show. And while I am grateful to have been seated in class and not driving a car, it still sucked so very much. It’s something so much deeper than just normal dizzy feelings and it is absolutely debilitating.

I am doing the best I can to not panic, to not assume something is wrong, but it is incredibly difficult. I have had a lot of headaches lately, but I’ve otherwise been managing. And I was so hoping that this semester would be the one where all the health issues finally fully faded into the background and now I’m absorbed by concern. I don’t know if I should be driving (though I did today), I don’t know what I can do to help or what I might be doing that is unknowingly contributing.

I feel like I had things figured out. I knew how to manage my pain, I knew how to deal with the frustration of it, but I am starting to worry that I don’t have any coping abilities left in me. Like I’m literally watching things spiral out of control and I’m just not sure I have the energy to fight another health battle, to deal with another problem.

I just think that at some point enough has to be enough.

I follow a lot of people on twitter, facebook and other blogs who struggle with chronic pain, chronic illnesses and other similar situations. I know that no two people in this realm are alike, and I tend to not be a radical in any of it. I’m just one of those people doing the best I can even with a really unpleasant constant headache. But yesterday I clicked on the home page of a site of someone with chronic illness/pain and I stumbled across a quote there.

“Most people do not realize that as they continue to find things to complain about, they disallow their own physical well-being. Many do not realize that before they were complaining about an aching body or a chronic disease, they were complaining about many other things first. It does not matter if the object of your complaint is about someone you are angry with, behavior in others that you believe is wrong, or something wrong with your own physical body. Complaining is complaining, and it disallows improvement.” – Esther Hicks

I’m going to try to discuss this as calmly as I can. Because this quote made me angry.

I don’t think that complaining all the time is a fantastic thing, but I hardly think complaining is something that “disallows improvement.” I can complain about being in pain, or comment about not feeling well and those statements do not change the way I feel physically. They do not cause me to be in bed longer, to have increased pain or to have more symptoms than I had before I spoke up. Complaining is essentially just the easiest way to acknowledge and describe something unpleasant.

So why is that wrong?

We don’t have to stand stoically aside and watch our lives change because of pain or illness without comment. We don’t have to pretend like it’s freaking GREAT that we’ve had more bad days than good ones lately, and I think the mindset that we do need to be happy all the time is unfair to those of us with chronic illnesses.

I am not writing here to say that there’s no place for optimism in chronic illness or pain. That’s not my point. I think positive thinking is very powerful, but I also think that there’s no shame in needing to vent or complain on occasion. And I really don’t think we should blame people for their pain when they do.

There are things that need to be grieved. There are things that need to be said aloud. There are things that if not said, if not addressed, will fester, and honestly I think that not talking about challenges in life (even if that talking is considered complaining) is what is really going to stall recovery at least mentally.

Acknowledging that things are tough doesn’t cause your white blood cell count to jump, it doesn’t cause inflammatory factors to increase, it doesn’t cause viruses or cancer cells to multiply. But it might allow you to come to terms with what’s going on. It might get someone near you to understand your pain and help you in ways they weren’t before. It might be the first step to getting out of that pain, whether physical or emotional because you finally put a voice to it.

It’s okay to stop pretending that everything is okay. It’s okay to tell someone that things hurt, that things suck. It’s okay to complain occasionally. But I’m not sure it’s okay to tell others who are hurting that they are making their pain worse, that they’re stalling their recovery simply by acknowledging that pain. I don’t think it’s ever okay to blame someone for their chronic illness. And I struggle to understand how someone else who lives life with chronic pain/illness, could possibly think that’s okay either.

So yesterday I had an idea. And idea that seemed TOTALLY brilliant at the time, but one that in hindsight was just an awful concept. My husband and I are very consistent people. We like what we like, we dislike what we dislike. Very little changes with us.

And so it isn’t surprising that we have some dietary habits that are not so great.

My husband’s is fast food. Mine is candy. We both eat way too much of our habit foods and it’s not like we’re gorging ourselves on celery. We are spending a lot of money on food we don’t need, food that isn’t great for our bodies, and well, we can do better. We just haven’t really wanted to.

So, my brilliant stupid idea was to challenge each other to give up our favorite unhealthy food and see who could go the longest without it. So Slappy is not allowed to consume anything fried (I couldn’t do no fast food altogether because I would have to do a lot more work at packing him food and grocery shopping and his success/failure would rest on me) and I am not allowed to consume candy.

It’s now 5:43 pm on the first day and I hate everything. Except candy.

We’re working on the honor system and hopefully we can both be honest about our food choices. We’re doing a pseudo-mulligan for the first week in case he eats something he didn’t realize was fried (dude, he is so helpless sometimes) or in case I genuinely forget and go to my m&m stash. It’s not a free pass to eat whatever you want, it’s a temporary lapse forgiven, but the mulligans are gone after this week.

The winner of the great favorite food challenge gets to spend 50 dollars at a (non-food based) store of their choice and gets bragging rights. Bragging rights that will be used because neither of us are particularly good winners. The loser just suffers learns to eat better.

We’re both hoping this will jump start our eating habits and not make us kill each other in the meantime. And though I’m not offering any of you 50 dollars because I don’t really have it to give at the moment (if I win the lottery tonight, maybe I’ll reconsider), I am totally game for any of you to join us.

Anyone want to join us in the great favorite food challenge?

Don’t join in lightly, because I plan on kicking ass and taking names.

Yesterday in the last lecture for one of my classes, the professor gave us some statistics. He likes to try to open our eyes with stuff like that, so it’s nothing new.

-66% of Americans say they are in “excellent” or “good” health.
-64% of Americans take medication.

And then he went on to say that if those people were truly healthy, they wouldn’t need any medication medication.

I sat with the pen shaking in my stupid shaky hands, and I was pissed. Because medications and physical fitness are not mutually exclusive. And to assume they are means that very few people in this world can ever be physically fit. But my anger was deeper than that. It wasn’t just at my professor, it was at myself, it was at something bigger than those numbers and that sentence.

I take a tricyclic antidepressant for my headaches, which also has had an added benefit of making me feel genuinely happy and stable. I take anxiety medication, I haven’t taken it a single time since September, even before I started the anti-depressant. I take nausea medication because I get nauseous frequently and if I want to be a productive human, I have to make that stop whenever I can. I take antibiotics when necessary and I take vitamins every day.

And yet, if you did a blood test, or if you looked at my physical overall health, I’m pretty sure I’d be considered in good health. I had strep throat last year, but aside from that, it’s been nearly two years since I’ve had an infection that warranted antibiotics. I’ve had colds like everyone else, but my physical health is pretty freaking normal. But I take medications, so apparently that negates everything else.

There is a big distinction that I think needs to be made. A distinction my professor is doing himself a disservice by ignoring.

There is nothing wrong with medication.

There, I said it. I’ve fought against this for most of my life. Every time I’ve had to take pills for depression or anxiety, I’ve been ashamed, I’ve made excuses. I’ve sworn to myself and others that I’d get off of them soon.

There is nothing wrong with medication.

I can still celebrate going longer without anxiety medication, but if I need it, I will not be ashamed to take it. I take medication so that I can be functional. Medication my doctors have prescribed, medications I purchased through a pharmacy.

I will not be ashamed of that. And I’m tired of people who have never experienced depression or anxiety making me feel like I should be.

Be grateful if you’ve never had to take medication or go to therapy for psychological issues. Be grateful if you could work through psychological issues without pharmaceutical help. But don’t assume that those of us who can’t do that, who take medication, are not productive, are not capable of being healthy, are not normal people just like you. Because we are.

And we are doing the best we can, just like you.

Yesterday marked three years since my brain surgery. It feels like it was ten years ago and I find myself frequently re-doing the math because it seems that surely my subtraction must’ve been off. But no, November 27th, 2007 was three very long years ago.

Three years ago tonight I was out of the ICU and in a normal room, thankful that the day after brain surgery had been much kinder than the day of it. I was still scared, still groggy and confused, but I was off all pain killers except Tylenol and I was able to hold both conversations and my food down.

For the next 8 months, the surgery was deemed a wild success. I had almost no headaches, I felt good, normal. You know, aside from the awful haircut. For a long time I felt like I had absolutely 100% made the right decision in having the surgery. But now, 3 years later, the decision doesn’t seem so clearly right.

People frequently ask me if I got better after my surgery. The truth is complicated. I had 8 beautiful months, and then I’ve had 28 that have been a challenge, especially the last 14. We still don’t know if the current headaches are a consequence of chiari, the surgery or just a special heaping of neurological issues. We have spent more than a year trying to figure that out, and the answer is still unclear.

So is the future.

I don’t know if things will be easier in a year. The pain remains merciless, but everything else is already a little more manageable. I’m able to plan for the future again without being overwhelmed by the present. I’m able to get through more days with less tears, fewer fears.

Remembering that I had brain surgery is always a surreal thing. You never grow up thinking that one day you’ll wake up with staples on your scalp and a cow heart lining on your brain. Or at least, I never did. I never imagined that 3 years after brain surgery, I’d still be fighting headaches every single day. I never imagined that this would be my life.

But it is.

And I am doing all I can to make the best of it. I remember the anniversary of brain surgery not to be upset, or angry. Not to be disappointed, but to be grateful. Three years ago I had brain surgery and I walked away from it without any of the scary outcomes. Three years ago I made a decision that gave me 8 months of my life without pain. I got married, I went on a honeymoon without pain. I am forever grateful for those 8 months.

And I am forever hopeful that there are more months like those. Even if the only way to get there is to make more tough decisions. To endure temporary pain. To face more anniversaries.