What Having Hydrocephalus has Taught Me........

What do you see when you look at this picture? A lot of you  in fact probably all of you would say, a girl in the hospital, or a girl getting ready for surgery and both answers would be right, in fact, I was getting ready for my 3rd surgery in 2 weeks in that picture... Now I will show you another picture. 

What if I told you that I see the same fun loving, crazy girl in both of these pictures? Although these pictures are about 9 years apart. I see the same girl... But at the same time, such a different girl. But it's the time that comes in between these two photos, the things you don't see, that matters most. I've grown so much in the 9 year span between these pictures, but as you can see one thing has never changed. And that is my smile. My determination to beat hydrocephalus and become a hydro hero has gotten stronger. I've learned a lot in these past 10 years, of battling constant headaches, constant, everlasting, unrelenting pain, I've learned that you can cry whenever you want, I've learned that nothing stops you from reaching your dreams but yourself. I've learned that you can rebuild your life after something tragic shatters it into a thousand pieces, and then the wind blows and moves those thousand pieces in a million different directions. I've learned that none of this is my fault, and hydrocephalus is just very unpredictable. I've learned that I'm not a hydrocephalus "sufferer" I'm a hydrocephalus Fighter. I've learned that re-teaching your body how to do things it thinks it already knows how to do and doesn't realize it can't because its' paralyzed is extremely difficult and mercilessly painful.

I've learned that no one understands you better than your mom, and it's ok to "want your mommy" even when you're 26 years old. I've learned that even when you can't speak a word, you can still say so much. I've learned that even though I want a cure to hydrocephalus more than you could ever know, sometimes clinical trials aren't for me (lol). I've learned that instead of asking my doctor questions, I should just go look up the answer myself because that's what he's going to make me do anyway, and then he will make me write a paper about it, so maybe looking it up is the better way to go (lol). I've learned that I now sleep better when my hand is clenched, and if I can't sleep, to think of my hand and whether it's doing that or not, and even though it hurts, usually I'm asleep within minutes of doing this. I've learned that doctors don't have all the answers, and sometimes it's nice to hear them admit that. 

Obviously as you can see I've learned a lot through this entire journey. But it's not over yet. I'm still fighting and so are millions of others. I've learned that hydrocephalus will leave scars, but those scars just tell a story about how I survived and that a body without scars is boring. I've learned that everyone at some point in their lives feels like they stick out in the crowd. I've learned that when people tell me I can't do something, that they're just fueling me to show them I can, and if they aren't they're not worth my time. But most importantly, I've learned that I have so much more to learn. And I can’t wait to get started.

Please Do [Not] Try

I was just checking my email this morning, when I came upon an email from the Hydrocephalus Association. Now let's be honest, usually about 3/4 of my emails, I just send directly to spam, even ones from the Hydrocephalus Association, but I don't know why, something told me to read this article, that I would regret it if I didn't, even though I was confused. It was entitled Please Do Not Try... This intrigued me, because I've been told exactly the opposite my entire life; that I shouldn't believe I was any different than anyone else, and that I could do anything anyone else could do. My parents never treated me any different than my siblings, although some of them will tell you differently ;-)  It was an article, about a girl named Kate. She was my age, and like me had been premature, and diagnosed with Hydrocephalus as an infant. She was in the hospital, and during one of her many tumultuous hospital stays, she woke up one morning overhearing the words of a doctor discouraging her parents from continuing to use "the pumping technique" to manually drain her shunt (which as an aside, I wouldn't do either, because although it may seem fun as a four year old pressing a little bump on your head, and feeling it fill up again, it is quite painful if you do it over and over). 

As I continued through this article, I read that she woke up, and listening to the doctor tell her parents not to pump her shunt anymore, she immediately with tears in her eyes, whispered, "Don't Not Try" over and over. Right after I read this, I was thinking to myself, "That's right Kate, you can't not try! If you don't try, you will miss out on so much! A lot of people with hydrocephalus, not only people who have had a lot of problems like Kate and myself, have this drive, to want to live. We don't know we have it, until we are forced to use it. Kate wanted to live and you could see in this article, her zeal and love for life. We want a lot of things. We WANT to live. We WANT to try... We WANT to prove that hydrocephalus does matter, but at the same time it doesn't matter, because we can do everything you can do. But most importantly, we WANT a cure!

Hydrocephalus is very much a "you're fine until you're not" type of illness. However, if you become complicated like I did, or like Kate did, your situation is compounded by several different factors and it then becomes a constant in your life. Yes having hydrocephalus makes us different from everyone else. But why does that have to be a bad thing? I can tell you right now with all the certainty in the world that if I were to grow up completely "normal" I wouldn't be half the person I am today. And there is no one definition of "normal." You make your own definition. So to me, does a normal person have a port in their head, with tubing down to their stomach and horrendous scars all over their body and a headache 24/7? YES. And I'm proud of every single one of those attributes. They always say, "Never be ashamed of a scar, it simply shows that you were stronger than whatever tried to hurt you."

Reading Kate's heartbreaking story was so close to home, because it paralleled my own story in more ways than one. It almost felt like we walked this journey together. She was fine for 12 years, me 14. Like Kate, the shunt, our life support had become for her the same thing it had become for me= we loved it but we hated it with every fiber of our being at the same time. Then when Kate turned 12 her entire life fell apart. Me? When I was 15. She even wanted to become a nurse..... The most important thing I learned reading Kate's story, was reinforced when I read her heart wrenching fate was that I felt so incredibly thankful. Many people after hearing my story, look at me almost with a curious look in their eyes, "How can you be thankful"? Or "Thankful for what" they will say. I say I'm thankful I'm alive! Even though my fingers are still pretty paralyzed, or when it gets cold out, my leg doesn't move very well, I’m still here. So many people with hydrocephalus can't say that anymore including Kate, she lost her battle at the age of 25, but her last motivating words inspire me to keep going. Kate I will TRY for you! She inspires me to keep going for other people who are just like me. I will keep going for Kate! Until a cure is found, we must do what Kate said on her deathbed. We must try! RIP fighter no more headaches, no more lying flat, no more spinal fluid leaks, no more infections… Fly high angel girl......

https://www.youtube.com/watch?v=z0rxydSolwU

Living A Lie...But You Really Can See the Invisible.

A lot of people, just assume that I'm doing fine all the time, because yes I go out, yes, I have a good time. But they all know what happens when you assume things....Look at the spelling, and if you still can't figure it out, then we can't be friends lol jk jk. But in all seriousness, Yes, I do go out, because what else would I do then? I either go out in pain, or sit at home doing nothing in pain. I'm going to be in pain either way. When I was little, I used to pretend I was a princess, and dress up. Well now, I play an adult version of pretend. When I go out, I am able to "pretend" that none of it exists. I can live the life I've always wanted to live, taking precautions of course. But can I do it all the time? No. My life came to a screeching halt, on October 23, 2005. And it has tried to restart. But restarting your life, is somewhat like trying to restart a lawn mower after you’ve been using it nonstop for days.  You pull the string, and sometimes it works, but sometimes it doesn't. Sometimes it works but only for a few seconds. But sometimes it works for as long as it takes to mow your entire yard. But then you need to turn it off and let it rest for a while. Sometimes a few days, sometimes a few weeks. Could you imagine what it would be like if we felt like sh!+ and looked like sh!+? Atrocious, it would look atrocious! .

I quite honestly, never understood the term "Invisible Illness". I'm a natural science major, I only like concrete things. Things you can prove. I know I have hydrocephalus and a whole host of different problems, and as long as I knew that, it was all that mattered. After I got sick, I hated the fact that I had an invisible illness, because I thought it meant that I had to prove I was sick.  I can remember, basically 3-4 hospitalizations where they told me in the ER, we can see nothing physically wrong with your CT your ventricles are actually smaller than they should be, so that could be the problem, but it’s not life threatening, so there is nothing CLINICALLY wrong with you. I felt so defeated, because I knew there was something wrong with me. I could feel it, you could see my entire demeanor had changed, so it must be true right? A lot of people accuse "spoonies" like me of faking being sick. But in reality, we are faking being well. And we must be doing a pretty good job, if you think the opposite. 

No my double life isn't sexy or mysterious or even crazy, well it is crazy but not in the way you're thinking. I've been pretending to be well, when in reality, I can't even go from a sitting position to a standing position, without stopping first and letting myself equilibrate. But I can't do that at work, no never, so I turn the corner where no one can see me, and then let myself equilibrate. Am I lying to all my colleagues? Maybe. Then I go to my pain doctor, and let her know my symptoms, of course since she knows nothing about neurosurgery, she's freaking out.... "OMG you need to call Dr. Frim... I nod, and say I will. But do I? no. I just come up with an excuse to use next month, such as my favorite, "Oh he wants to watch it before we change anything." Although I think she might be catching on... I know I have a problem, But I also know it's not life threatening. And so do I want to sit in clinic for 5+ hours for him to change a setting? no. But if things get remarkably worse? Yes then I will go in. It's a very delicate balance, it's like standing on a teeter-tawter(And I know I spelled that horribly wrong) and trying to ride it like a surf board, but there are already people on it. You just can't win them all. 

I've never really been much of a liar. Not because I'm little miss perfect, but quite frankly, because it's too much to remember. So why would I be lying about my health? For my own emotional protection. People always want to know how this is effecting us emotionally, and for me, it isn't, or it's effecting me the least amount, because I do admit, I keep myself in that little imaginary perfect bubble for my own emotional protection. When people ask me how I am doing? Unless I'm physically dying, I will always say I'm "ok". That's a spoonie's go to word, because it doesn't mean you're good, but it also doesn't mean your sick enough to be in bed, hating the world.

So what can you do? Be there. Believe us. I realize that being able to believe us when we go out and live a semi normal life is difficult. But maybe it’s not for you to understand. Maybe it’s not even for me to understand. For all I can do is accept it. Listen to our pain. Because that’s the only way you will ever be able to see it. 

Alone in A Room Full of People

I'll be the first to admit, that for my entire life, the anomaly of depression; the action of being depressed, withdrawing from the entire world into your own, really confused me. It wasn't until I got sick that I began to understand it. At first I would talk about being sick all the time, just because I was so detached from it all that I never really thought I could be talking about myself. It's almost like an alternate reality that you put yourself into, for your own emotional protection. Breaking your leg, or having your appendix out yes, those are all traumatic things and I would never try to belittle them at all; thankfully nothing of that nature has ever happened to me, but having those things happen to you, yes that might make you a little disconnected with the world while you're healing, because it was traumatic for you. You could think oh no one understands, but then when you get better, you're back to your normal self, back to doing what you love. What if you woke up one morning and you just weren't the same, and no one could tell you, not even the smartest man in the world, IF you would ever be the same again? Oh yeah and add in that now you have chronic pain and every surgery you have from now until the day you die, will make you infinitely worse.... And then there's that looming cloud of darkness hanging over your head, How many surgeries will I end up having? Another unanswerable question. It's like have a nice day and oh yeah F You.

Having an illness, even one that is not so uncommon can be extremely isolating. Because in my mind, conditions are like fingerprints, no one is ever  going to have the same story as you. I know some kids/young adults who are sadly so much worse than  I am, but the converse of that statement is also true. I know some kids/young adults who are doing so much better than me right now. But now the majority of people I talk to are doing better than me unfortunately, well unfortunate for me good for them. When I started to realize that everyone in my life, from my school friends, to my family was "acting differently" than I was, and I seemed so different than I felt I was, I just started retreating into myself more and more. Even now, almost gosh 11 years, down to the day, (man that's freaky) my friends all ask me, why are you so quiet when we are in groups, or my parents are like OMG are you ok!? And I tell them, I'm fine......It's just when you watch the world around you that you truly don't feel like you're a part of anymore, it sort of freaks you out. It's like standing outside in a snow storm and looking inside a nice warm house with a fire going and cups of cocoa, and a Christmas tree, and knowing you will never be able to go in there and get warm. Sometimes I'm just sick of all the questions. Part of what makes pain actually painful is it's privacy and un-share-ability(if that's even a word) because like your fingerprint everyone's pain or version of what is painful is different. I can get up and go to work and then go to a party 2 weeks after brain surgery. Does that mean you should? Or could? Not necessarily.



The reason why I don't talk about it anymore, is because I know that everyone is trying to be sympathetic, and I truly genuinely appreciate it, I really do, but it's like the fingerprint thing, no two cases are ever going to be exactly the same, and you're never going to know what I went through. Because what is worse? Being in pain and being alone? Or being in pain in a room full of people where you're the only one who knows and understands it? I would honestly take being alone any day. There's always a window with invisible pain, and sometimes if you're really good, you can see straight through that window(ie my mom) and sometimes that window is cloudy and you can only see mist (ie the rest of the world)



One of the most devastating parts of chronic illness surprisingly is not the illness itself, or the annoying/painful (insert your adjective here) symptoms it causes. It's the loneliness and all the emotional baggage that comes along with it. So yes, I have hydrocephalus, SVS, aqueductal stenosis, a failed ETV, a shunt, a catheter, a ProSe, a gravity compensating device; any or all of which could fail at any moment, but oddly enough that's not where my worry is most of the time. But the stress of having all these things is multiplied and magnified because of the pain, but it is also what causes the pain and so it's like playing a game of ring around the rosy.  You're never really done with it until you fall down, well imagine if you couldn't just fall down and you were required to spin and spin, never really going anywhere, but just spinning. Any and/or all of these different things that I have inside my body, could possibly kill me, I've known this for a long time, and it's taken a long time for me to accept it, but I refuse to have any regrets, and I live in the moment, I know I'm as healthy as I'm going to get right now and that's all you can ask for if you're chronic. is How are you doing right now? Well right now, I'm alive, and I could never ask for anything better.


Yay I'm on google images! Never thought this would happen lol.

The Hidden Cost of Chronic Pain

If you look up hydrocephalus in the encyclopedia(assuming people still have one) or on the internet, you will see pretty much the same thing. That it's a blockage in the flow of cerebrospinal fluid potentially caused by what could be hundreds of different things(csf is gross by the way just thought I would let you know). It says that if left untreated, it WILL lead to mental retardation, growth in skull size until you are unable to sit up because of the sheer size of your head, and ultimately DEATH. But then ironically after hitting you with those seemingly insurmountably terrible odds, it says but there is a treatment. But then it does it again. It says, there is a treatment(HIGH) but then it says, but this treatment is very flawed, and has a 50% risk of failure within 2 years(and FAIL), which will probably lead to many brain surgeries throughout your entire life... What they leave out though, is the fact that with each surgery you become more complicated. Maybe that's understood? I'm not sure, but I can tell you one thing I definitely wasn't expecting to be where I am now 11 years ago when this all started.

Chronic pain has stolen my entire life away from me. Everyone says, "Oh but you go out you have fun" and I don't want to give the wrong idea here, YES I do but everyone who knows me knows I love to plan, and if everything is not predictably picture perfect I freak out. (Which confuses the heck out of me why I love dramas on tv, so many twists and turns but that's a whole other story)I had this entire plan of what I was going to do... And I had to throw it all out of the window when I got to college. Chronic pain has stolen spontaneity; it has stolen the ability to just curl up with a book on a Monday night, I argue with myself, "Kimi if your pain is too bad, you can't turn on the lights, because otherwise your head will pound too bad..." I saw my body go from that of a healthy teenage girl who loved to go on walks with friends, to a girl who still loved to go on walks, but struggled to keep up with friends because her foot hurt too bad, because she had not been wearing her orthotics that her Physical Therapist basically said had to be in her shoes every time her feet hit the ground. Many of you think, Yes this sucks but hasn't it become the  slightest bit predictable now? And the answer is YES it has, but do you think that has lessened the blow? No. I've seen my life in both lights, the healthy, invincible light and the  chronically ill, would rather sleep till 10 than get up at 6 light. And I would be lying if I didn't say I wanted to "smush" them together so I could have both. Don't we all want to do that with some things?

 But it's like I'm straddling an invisible line. On one side is my chronically ill life, and on the other side is my healthy, carefree fun life. Would I like to take what I've learned from both, stick them in a bag and shake it up? Of course... But I can't. I recently went to the pain doctor and got the greatest news ever, she said the two words that every chronic pain patient wants to hear, "You're stable." But as soon as the excitement wore off, the fear set in. "Wait does that mean at some point I won't be  stable anymore"? Will I at some point, down the road, be on that ever familiar path of tweaking medications, becoming ever more tolerant of narcotics, which is my greatest fear? However, the facts are the facts, every surgery I have, makes me infinitely worse (never mind that in the past 10 years I've had 35+), then it's back to the pain doctor where she says the 5 words NO pain patient ever wants to hear, "You are no longer stable". It's like playing Russian Roulette with a drug cocktail. You try it and if it doesn't work you try something else; maybe a higher dose; knowing nothing about what will happen; my  favorite word ever predictability? Gone; having ideas, guesses but those guesses mean absolutely nothing if the guess doesn't work.

We fight. We fight silently, while tears bathe our pillows at night, we don't sleep because we are wracking our brains with "what if''s" or "could have been's."   Every second of every day we are witnessing the ever present betrayal of our bodies. We aren't strong because we woke up and chose to be strong. We are strong because we woke up realized that we have no choice in this matter, we have to keep going, there is no alternative.  But in reality none of that matters at all. All that matters is how you view yourself. Yes others having a semi nice view of you is always a plus but it's really not what you need. You weren't put on this earth to please people, but if you do hey bonus! So just stay with us, be with us. I can't promise you it will be fun, all I can promise you is that it will be worth it. Maybe not today; maybe not tomorrow but someday, it will all be worth it. 

I'm Still Me

A couple days ago, I had just gotten home from dinner with a long time friend, when I thought about it...He treats me so normal...But IS he the type of person whose head is racing at 100mph every time he sees me, thinking, "Oh should I ask her how she feels, is this going to make her mad, OMG But I don't want to sound insensitive UGH OMG I DON'T KNOW WHAT TO DO!" I didn't think so but I didn't know, and he's the type of person where if you want to ask him something you should just do it, because he never lies to you. And so I texted him after he dropped me off, probably not the best idea, since I knew he at that time, was in the middle of Lake Shore Drive, but nevertheless, I texted him. I asked him, Whenever we are together, do you ever think of me as your sick friend? Do I still act the same? Do I act sick? Or do I act totally normal? And honestly I totally had no idea what his answer was going to be, because everyone acts differently to other people, but to them they could think it was totally normal. and he said exactly what I wanted him to say. He said, No you act completely normal. If I didn't know you were sick, I would never know. And I can't thank friends enough for saying this.

People ask me all the time, how I cope with it, and even I think it's very cliche to say this and half the time you never believe it until you go through it, I didn't either, but you really do get used to it. I had heard other people say this and I never believed it until I went through it myself, "You get to the point where being sick becomes the normal, because I never feel good but then you just get used to it so it takes being really really sick to even know there's anything wrong", and that's really true.The thing I have had the biggest problem getting used to is the fact that one of the best rehab places in the country, that will remain nameless because I don't want them to find my blog and possibly send me to prison, didn't handle my therapy right at all. The only part of my therapy there that was beneficial was my speech therapy, which all of you can see is now just fine. But that's where it ends. My leg still feels like I have a 5 lb weight on it and in fact will continue to get worse over time, until basically I am unable to walk/put weight on that leg at all, And so about 8 years ago, I got orthotics, but being a teenage girl, I wanted to be able to wear cute shoes, and so I sort of tricked my mind into thinking, oh you only need to wear them when you go for long walks, and then I barely did that......I guess you can call it my version of teenage rebellion, I know you're thinking, OMG if I was going to not be able to walk I would wear them all the time! What are you  thinking!? And I know on it's face that's what it sounds like, but it's not that simple. I wanted to be normal. I was a girl who had just gotten her entire identity stolen from her in a matter of 10 seconds. In the amount of time it took to snip that one blood vessel, my entire 17 years of becoming comfortable in my own skin was taken away from me. But now I'm seeing what my not wearing orthotics for basically probably 6-7 years when you count up the total number of days I didn't wear them, has done. Now every pair of shoes I own, I tell what foot they go on by looking at the front of them. If the front is totally demolished, I know it goes on the right foot. Because the way foot drop works is it makes it so the front of your foot can't really lift itself when you're walking and so you drag it along the ground for lack of a better term. I also now use my left hand to do virtually everything, not necessarily because I'm lazy, I learned that the area of the brain where I had my bleed, in the easiest terms, if you're right handed and you do something with your left hand, your brain says, What are you doing? You're right handed!? Mine doesn't anymore. In fact, when I'm using my left hand, my brain forgets that I even have a right hand. I probably could have written this entire thing with one hand and not even have known it.(I didn't by the way, I'm just saying I could and probably wouldn't have noticed.)

After all of this happened, my admiration for my doctor sort of disintegrated. Once I learned what he was "Supposed to do" and then "totally neglected to do". I told my mom that I was so mad at him. Why did he do this to me!? And she gave me one of the best pieces of advice I think I have ever gotten. She said that the one way I can show him and the whole world that I can bounce back, is by being happy! Now at the time, I thought that's easier said than done, I went to bed nearly every night wanting to cry. But now looking back on it, even though I had my days, for the past 3,016 days since the stroke, I've been happy for most of them. And I've asked my mom through a lot of this, "Is my personality still the same?" and she told me, "You're a little more reserved, or cautious is a better term for it, but you're also much more endearing, and compassionate, and I'll take that any day." And I guess I will too.......

How Selfish Are We Willing to Be?

Everyone has heard it before, from the time we were tiny. Always think about others before yourself. Let the other person go first in the elevator. Let the guest have the bigger piece of cake. It's just one of those things you learn to accept because you want to be a decent member of society, and not a jerk, (well I can't speak for everyone, but I hope I can for everyone who would be reading this.) But when you're chronically ill, you're constantly being labeled that you're an "attention hog" or you're accused of "faking it". But the reality for "sickies" is we can't be of any help to other people unless we take care of ourselves, and this is just an anomaly that very few can understand because just the opposite is ingrained into our head from the time we are 4 years old. It's not because we are rude, or an attention hog that we do these things. The truth is we  deal with so many "other things" every day in addition to everything you deal with. We have to deal with (Now I don't know about every  chronically ill person in this world this is just what I deal with)pills, loads of them, meds cases, and not spilling your pills all over the floor which I have done, in the not greatest of places...getting enough sleep, appointments OMG appointments and then I have to worry about that ever worsening thing in my body called chronic pain, that gets worse with every surgery, every time I brush my hair and further infuriate a few hundred thousand already really pissed off nerves. Every second of every day I'm reminded that I will never measure up to everyone else, because of something I never wanted in the first place. My parents find it somewhat strange that I enjoy spending time by myself, YES this is because when I'm by myself, I have no one to compare myself to, no one to show me what I could be doing if I never got sick. When I'm by myself, I can trick my mind into thinking that none of this exists...

I know a lot of you will think, "OK you're somewhat selfish, yeah me too every once and a while," but it's actually far from selfish. When you do good for yourself, you can then do more for other people. I love analogies, and so I will say it in an analogy. You know how in an airplane, they say when they're telling you about the masks, you have to put yours on and then you can help your children? I never understood this until now. I used to think, "Why would I think of myself before I helped my child(ren)? My pride and joy? I would want them to live instead of myself... But then I thought about it. Only when you are at your best can you be expected to give your best to other people. And when you think of it this way, that whole situation makes perfect sense right? You need to be perfectly healthy and able to breathe before you can extend your help to help someone else breathe with ease. These are all subjects that no one talks about, because who wants to sit around the dinner table and talk about something this depressive? But in reality, as much as I hate talking about it, it's something that needs to be talked about otherwise, you're just adding fuel to the fire of resentment, and confusion.

A lot of friends don't seem to understand the unpredictability of chronic illness. Yes you can be fine one day and then can't get out of bed the next. And this is all day every day for us. I said this in a past post, the inability to predict your life from second to second would annoy the crap out of every single one of you, this is every second of every day for a chronically ill person. But I know it's sort of cliche to say it, and more than half the time you probably won't even believe me, but you really do get used to it, not because you've accepted it or you're letting it win, it's for the sheer reason that it would make you go crazy if you didn't just accept it, because for a lot of us this is never going to go away, and I can tell you, I probably would have hurt myself a long time ago, if I didn't just tell myself, OK this is your life now, and you have to accept it. But don't think I just said this and it happened. Oh no, it was a long time, but I was sick of  being so upset, I would just make myself sicker, and I just said, you can keep making yourself sicker, or you can begin to realize the reality of your illness. Everyone always has this, "Oh you're so inspirational"affect when they're with me, and I do appreciate it but I'm really not, you have no idea of the freak outs I've had behind closed doors, and I think it's natural to do this. It's natural to mourn your previous self. It's natural to wish for it back.

So it all comes down to which risks you are going to take. Are you going to go out with friends knowing that you may pay for it later, and I don't mean by lying on the couch watching tv, I mean by being in bed, with the curtains drawn in so much pain you can't look into the light without throwing up. I've been there, does it mean I would take it back? Not necessarily. If  your life were to  vary from minute to minute after being as close to picture perfect for 15 years, what would you do? I think I can speak for every chronically ill person out there when I say, all we want to do is get better. We all want to have what you have. But for a lot of us moving forward, also means the same thing as moving backwards or staying in the same place. And I hear it all the time, "Oh your pain can't be that bad right"? And the answer is No it's Not that bad, it's much worse...So if it were you? How selfish would you be willing to be?