Fraud
Today marks 4 weeks since my head started hurting. Which is 29 days (because I’m counting today, no, I don’t suck that much at math) of my life, completely drowned with pain. I feel helpless, my friends and family feel helpless. And really? We are.
I will tell you all about the emergency room visit soon, but I need some time to not be so bitter about it before I can write it. If I tried, I’m pretty sure every sentence would be peppered with profanity and I’m trying to cut back on that shit.
I haven’t been sharing my headache issues with my classmates and I’m hesitant to talk about it with most people in real life, because one of the biggest problems I face, or at least feel like I face, is people not believing me. Yes, I understand that 29 days of headaches is outside the norm. I really do. But that doesn’t mean it’s untrue.
At the emergency room, one of the doctors asked me about the headaches. When I told him how long it had been since I hadn’t been in pain, he did a double take. And then he got that look. The one that says, I doubt it. That look that makes me want to scream.
He went so far as to tell me that he’d never usually do a CT scan on a person who looked as good as I did, but since I was there, he may as well. I’m sorry I don’t wear my pain more obviously. Really. I’ll try to look shittier worse from now on so I’ll get better medical care. Clearly my appearance is the BEST indicator of the way I feel.
And over the past four weeks, I’ve gotten several really delightfully special emails from people who used to read here, or used to follow me on twitter, letting me know that they were “done listening to the whining” and were calling it quits. One even asked me if my pain was so bad, why was I still out doing various things that I was tweeting about. (The answer to that, by the way, is because sitting in my bedroom all the time isn’t helping either. FYI)
Look, I get that reading here and following me on twitter right now is not a picnic. Hell, it’s often not even interesting (but beware, I have several non-health posts headed your way…theoretically), but if you want to stop reading here or stop following me on twitter, DO IT. However, you do NOT need to tell me that you’re doing it or why you’re doing it. You especially don’t need to make me feel bad about not entertaining you enough. I already feel all kinds of bad about being Debbie Downer all the damn time. It’s even less fun from this end.
I’ve lost 30 twitter followers in the last week. Whether this is the result of complaints or just people falling out of like with my (profound lack of) wittiness, I don’t know. I can’t know and frankly, I don’t want to know. But it makes a small part of me angry and sad. At this time when I need the most people to support and distract me, I seem to be losing the most.
I’m not sure where I’m going with this. It’s been 29 days since my head hasn’t hurt and I’m not coping well.
I miss me more than any of you do and I find my whining difficult too. Trust me. I’m trying.
40 Responses to “Fraud”
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Welcome! I'm Katie, a 28 year old, full-time graduate student who just happened to have brain surgery in November of 2007 to give my ginormous brain a little more space. This blog chronicles my daily life, from relentless headaches to being a doctor's wife. Sit down, get comfortable and stay for a while.
See that’s the thing about most people with a chronic health condition. Most of us feel like crap all the time and only share it when it gets really, really bad. Sometimes you have to feel like you are living through it all, otherwise the pain and suffering is not worth it at all. You should continue to share how you feel. Those of us who know what its like want to know and its not healthy to keep it all inside. I’m still praying that somehow you will start to feel better.
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Not sure what it says about me that I’ve started following you since you’ve started losing people…wait! Maybe it’s ME! Damn, I’m sorry!!
hehe
It pisses me off when people say “Well, you don’t LOOK sick” or “really? because you look ok” WTF?
My dad did that to me the other day – I’m lying on the couch and he asks if I’m on pain pills after my surgery (the next day, btw) and when I say yes, he says “Oh, well I didn’t need them after mine!” As if I’m some kind of weakling for needing them (FYI – he had robotic prostate cancer – I have a 6 in and 3 in incisions!! Jackass)
So anyway, sorry you still hurt, and sorry people are idiots, but I’ll be hanging out, if you don’t mind, whining or not. =)
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Don’t worry about the haters. The rest of us are pulling for you and hope you get some relief soon!
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I’m so sorry you have been feeling so shitty lately! I totally get it, I’ve told you why I don’t own a gun w/ my headaches, and I mean it, I would end it here at times and that would suck! I’d love to give you ideas for ridding yourself of it, but I have a feeling there is nothing you haven’t tried! I’ll still be here and on twitter to listen to you and offer all of the support I can! I cant wait to hear that you feel great one day, but not for me, for you! Take care, and all the haters can fuck off, right?!
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I heart your blog, whine or not! Whine away….I’ll bring cheese, and listen, and drink wine and wish your head head didn’t hurt. But probably not as much as YOU wish it didn’t hurt.
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I believe you. I had almost continuous headaches for over 10 years before they finally went away. I had them all through my college and graduate school years. They often were so bad, I could not move my head without horrible nausea, so I learned to take notes without looking at my paper. The only time I got any relief was when I was asleep. I had trouble with both other people and physicians believing in the pain. I was told I needed to relax, not take things so seriously, the headache was just a tension headache, I was making it up, etc, etc. I sincerely hope it doesn’t take you as long to find some relief. While many people seem to think their college years were the best years of their life, my memories are of a lot of pain and trying to get through school despite it.
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I hate this. It’s the same phenomenon as the people who tried to tell me that suddenly losing 20 pounds was fine because I was still a “healthy BMI”. Or people who like to tell obese people that if they’d “just cut out soda” they’d probably lose all that weight, as if they’re guzzling 2-liters every chance they get. Or doctors assuming that a first-time mom can’t possibly be in early labor because she “doesn’t look like she’s really having contractions” — until she’s on the monitor, oopsie. Or the ones who assume my mother is just being stupid when, in fact, she can’t hear them.
I hate it, and I hate that people are doing it to you. Comments like the one the attending made are so inappropriate it just makes me want to hit someone. (Okay maybe I am just in a want to hit something mood tonight, but this is a good target I think!)
I believe you, Katie. I believe you are in pain. Go ahead and rant and whine and scream as much as you want, this is your space and you deserve the right to express your frustrations. Screw all of them and their narrow-minded, bigoted asshattery. *hugs*
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Whatever. It’s really lame and stupid to be mean to someone for no reason, but people seem to do it without a second thought if it’s to someone online. Somehow it seems less real or something. I’m a new reader and even I can understand this is hardly something you’re proud of. You’re not ENJOYING being in pain. But if it something that’s part of you 24/7 how are you supposed to not talk about it? Screw it. Screw them. *hugs*
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Katie
You have a forever reader in me. (But not a Twitter follower — I broke up with Twitter… I follow NO ONE!)
I think you are fantastic. I think it’s amazing that you can even get out of bed after 29 consecutive days of headache, let alone ATTEND GRAD SCHOOL!!
You have inspired me to start pushing myself harder to do the things I love again, because, as you put it so well, “sitting in my bedroom all the time isn’t helping either. FYI”.
Your pain is palpable in your words. I can’t believe that someone would have the audacity to doubt your pain, but unfortunately I know all to well how you feel.
If you need to vent or rant, I will be here to listen/read. Guaranteed.
Take care,
Kate
PS My favourite reply to the “You don’t look sick!” is, “Oh. Well, you don’t look stupid. I guess looks can be deceiving.”
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Haters to the left. It’s their loss. Hoping you get rid of the headache soon, whatever is causing it!
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When my sis was ill with MS, I had a fantasy about inventing a machine that doctors could plug into and it would make them feel what their patients were feeling. THAT would change things.
Give me the names and addresses of the people who have been jerks. I know people.
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Sadly, I remember what it is like to have a long term headache, worst headache ever. I had one that lasted for 6 months straight (due to a concussion) then tapered off over the next year …. finally ending 18 months after I hit my head. I was only allowed to take pain meds once a week due to concern of a rebound headaches. I commented once to my MD that if I could I would cut out that part of my brain if that would solve the problem. And now, I have developed migraines … a reminder of how bad it once was.
Not many people knew about the pain … I avoided talking about it. It was easier to pretend it didn’t exist.
I have been keeping you in my thoughts and prayers. I know I don’t know exactly what you are going through, but I do know about stupid headaches that never go away.
Those that have unfollowed you … have no idea what it is like to have something like this … I hope that they never do. I do wish that they had more compassion and I hope they never find themselves in a spot where they get the same treatment they have given you.
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Well, I’m still here, even though I think I may have lost YOU with my healthcare diatribes.
Okay, here’s the way I look at it. It’s YOUR blog. You get to say whatever you want. And people who want to read it will do just that. It’s voluntary, not mandatory, so why do they have to announce their departures with fanfare? If they want to go, go.
I, for one, am glad that you elect to share rather than hold it all in. It’s better or you to let it out. And I like knowing what to pray for.
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Your fair weather fans can suck it. I don’t comment a lot, but I always read, and I never doubt that you are feeling horrendous.
And I will ALWAYS read your blog. So neener neener on the haters.
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Been laid up for 6 months with a bum knee. Found your blog and it has helped me more than you know how you have lifted me up!!!!!!!!
I am in pain 24/7 but wear a brace so people can then understand. Go to HELL eveyone else. May you feel 1/3 the pain DAILY and then speak!
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I know someone who had surgery as an adult for Chiari and also has Ehlers-Danlos syndrome. She frequently had migraines lasting 10+ days, visual disturbances and a whole host of other issues. She had to take major drugs to fight the headaches (including anti-seizure meds), it was really awful. And yet, she made it through law school (with readers because of the visual disturbance issues), worked with our non-profit and had a life. In the last year or two she has seen huge improvements in her health and now is even able to work.
Hang in there, and make sure you find a specialist who will look for connections to other conditions that could be contributing to your symptoms.
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I’m glad that this is a place where you can talk about your pain. I rarely comment, but always read. I hope you feel better soon, not so you will stop talking about your pain, but because I want you to feel better.
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Well, of COURSE you go out and do stuff despite the pain. There’s no use having a pity party all the time. I guess if you’re going to be in pain, you might as well be doing something fun while you’re in pain. My mom has struggled with major arthritis pain for years, and also went through a bout of cancer about 12 years ago. She slowed down for sure, and there were days that she couldn’t do much of anything, but she still tried to do as much fun stuff as possible.
That being said, it’s also OK to complain on your blog and Twitter, because it can be therapeutic to complain. Keep on keeping on – I don’t forsee myself stopping following your blog or Twitter anytime soon!
If it makes you feel better, I think you rock. If I had as many medical problems as you, I would be hard pressed to be as active, witty and just overall great as you. Hang in there!
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If there’s one thing I’ve learned from my recent blog-whining (blhining?) about my IF, it’s that you have to not worry about what other people say (I was letting one nasty email four years ago make me feel guilty about blogging my problems) and just write what you need to write. It’s hard sometimes, but it’s your space.
As for the Twitter peeps – who does that? Who emails to let someone know that they’re unfollowing them? Someone with an overinflated sense of self-importance, that’s who.
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I would not change a thing that you are saying/ posting/ tweeting. Personally, I find all of it a mix of both inspiration and amusement, depending upon your mood. It may seem strange to many, but I always look forward to your twets and knowing what the day brings to you, and what you, in turn bring to us.
As you know, many people have very poor personal skills when it comes to dealing with the chronically ill. It reminds me of this quote:
“The purpose of human life is to show compassion and the will to help others.” -Albert Schweitzer
I know that you do not write to seek compassion or sympathy. But that quote is a valuable life lesson for all of society.
The step to “unfollow” you, is a comment on the unfollowers understanding of humanity. Or should I say lack of understanding…..
Thanks for the knowledge, wit and education that you bring to all of us.
Tom
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People can suck. Period. There are plenty of us that are still here for you. Those people that have stopped following you, good riddance.
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If you can’t complain/whine here, your own site? then were can you? Seriously…you do what you need to do. I haven’t read the site in awhile, as I have been busy. I do see the tweets, and have never thought to myself “this girl whines too much” I did unfollow a friend because she spent her entire time tweeting about NKOTB and well that is wrong…;)
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you write incredibly well
still here, not going anywhere, still hoping you can find some relief
you inspire me
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Katie, my ChronicBabe, BrainBabe Friend.
I’m NOT going anywhere. The first thing I do when I turn my computer on is open your blog or look for you on CB.com, because not only do I believe you, but I feel like I am your soul sister in Colorado. You understand exactly what I am going through. I have been dealing with what can’t even be described as a headache – beyond a headache since May. Every single day, it never goes away – just fluctuates on that annoying pain scale they ask you about – mine goes anywhere from a 5 to a 10 without warning. With it comes a wide array of other painful, annoying symptoms.
I’m 33, and a go-getter, one who can’t stand to sit around. But I have had to scale back my life, though I still push through the pain to do stuff when I can so I don’t go completely crazy. (This is where and when I refer folks to your Invisible Rules entry). Plus, as many a doctor, let me repeat that, a doctor (no offense to Slappy
) has told my that pain won’t kill me. So what am I supposed to do curl up in a ball in bed all the time? Yes, this is all I can do sometimes, curl up in a ball and cry, but that does get old, so, like you, those who live in chronic pain, we survive, and some how – thrive. This does NOT mean what you are going through or feel is NOT real.
When people say “but you look so good.” I’ve just stopped trying to answer or acknowledge it, I don’t have the energy. Unless it is an opportunity to really educate someone and make a real difference. Otherwise I just leave it alone.
Just know for every person who “leaves” you, you have more who support you. There are those of us out there who literally feel your pain on so many levels – let those people go who don’t get it. Save your energy. Your pain IS real and your voice is a HUGE support to those of us who put our support system together online. Your voice is important so those health care providers who read your blog who might just “get it.” Your voice is important so you can stay sane. Your voice is important so you can get well. I know that sounds opptimistic – a roll your eyes at kind of line – trust me after my doctor appointment this past Friday and 11 years of “shoe dropping” I’m slightly jadded, but I have to keep a bit of hope alive that I will feel “normal” again and so will you – our normal at least.
So keep talking girl. No matter what your voice sounds like, says, crys or shouts – it is true, real, alive and in pain. Never pretend to be something your aren’t.
You are stronger, far stronger, than you think. Hugs. kah
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I’m sorry people aren’t reading because you’re still in pain…I think they’re rude!
I did have a headache once that lasted for 3 months. I think it was related to low hemoglobin? But no doctor ever had an answer. So I understand.
And I don’t think people read my blog because I focus on my son’s incurable disease. And it really doesn’t matter to me! Write for yourself, and many of us will continue reading!
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I’m not going anywhere – and you can’t make me – whine away. *hugs*
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SOME people fucking* suck. You don’t need them, so don’t let it bother you.
Those of us that love and care about you will be here listening to WHATEVER you have to say.
Love ya girl. Even if I DO give you shit on a regular basis.
*I’ll swear for you. You’re welcome.
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I’ve been following your blog for a while now but I just followed you on twitter. I know I’m just one person and I can’t make up the difference in your other lost followers but right now you need more supporters and not losers.
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1) i pretty much hate most doctors.
2) i definitely hate the doctors who give you the look. cuz i get that look almost every time i bother to go to the doctor/er.
3) next time just go in screaming in pain. maybe that will get you noticed. then again, it’ll probably make your head hurt worse.
4) fuck the people who don’t understand. there are plenty more that do.
5) i don’t like even numbers.
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I cried when I read this post. I have seen the same horrible ER experiences with my daughter. No one believes you can have a nonending headache. They look at her like she is a seeker. Her friends are no more because who wants to be around a sickie all the time? I hurt for her. The stroke didn’t help but she is now off the walker and almost back to norm. However, the headaches press on. Katie, I’m so glad you have Slappy and he will be your best support because he knows you and he is learning to be a doctor. I love you and pray for you daily. Hang in there…I understand.
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Amen to all of you! And I say that in a “Hooray for all the really great people in this world and more specifically Katie’s world” kind of way! These words of support are so empowering, especially to someone whose sick and fighting to get well! Katie – not trying to speak for you here, just a chronic babe who feels such positive, fighting energy from the folks posting in response to your very real entry! You really do have a great group of supporters – known or unknown!
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No one needs to judge you. WTF? Until they can walk a day in your shoes they can just shut the hell up. As far as those leaving goes, don’t let the door hit them in the butt on the way out. That’s the great thing about blogs…if you don’t like what you’re reading, go elsewhere.
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The people who quit listening because they don’t want to hear about the pain are the same people who are going to be completely screwed when something happens to their own health one day, or that of one of their loved ones.
When something happens closer to home you can’t walk away and it will happen at some point in their lives, it always does.
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Well crap. That sucks. I hope for some type of successful relief for you soon. I have an auto-immune disease and yes, people give me the “you don’t look sick” comment or look all the time. Eff em. If I could get up and kick their collective ass without being in pain to do it, I would. I find that I have to be really dramatic when talking to docs if I want them to really take notice and seriously treat me. Which sux, because I’m a low-key, blend in kinda gal (except for the dream of collective ass kicking!). I’m hoping for all the best for you!
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I think it’s crap that people would unfollow you for being in pain and talking about it. Of course, you’re going to talk about – it’s a huge part of your life right now affecting everything you do. I am impressed that you can talk about anything but the pain you’re in. And good for you for getting out and doing things.
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I think you’re freakin’ hilarious. I think it sucks that people are bein’ assholes about your pain.
Tell ‘em to go outside and play “Hide and Go FUCK YOURSELF”
I’m sticking with you, because I am looking forward to the day you can find the treatment or thing that makes your headaches go away for good!
I’m calling mystery diagnosis!
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Deej – speaking of “Mystery Diagnosis” – don’t laugh – but I actually watched it for months religiously to see if I could figure out what is wrong with me! My husband now asks prior to any show we watch that has any hint of a medical angle (i.e. – MD, House, etc) if we are watching it for pleasure or diagnostic information only!! Crazy, I know, but I’m desperate!
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Mean people suck.
My mother had a debilitating injury in a car accident and went to work every day for 32 years. I remember nights when she woke up crying from the pain, but like you, she did what she had to do.
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FWIW, I *just* started following and reading you.
COMPLAINERS, UNITE!!!!
xoxoxo
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What everybody else said.
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