Tuesday, September 29, 2009

To Vaccine or Not?

See this is exactly the kind of thing I was dreading would happen. I would have to make a huge decision based on the fact that my new compromised immune system sucks. Which, FYI, IT DOES.

Ok, so here is the deal. The summer is ending, the cold is approaching. When cold happens, illness tends to follow. Now, normally, this would not be a big deal, at least back in the old days. I would go to the doctor, get some antibiotics, drink clear liquids, and wait for my immune system to kick the ass of whatever little evil was attacking me. But now, now it's all different. As previously mentioned, antibiotics are the worst thing for me and letting myself get dehydrated and surviving on next to nothing is also a horrible idea. Plus, my immune system would rather attack my intestines so getting it to rally to kick the flu bug out? Hardly going to happen as easily as it used to.

So now I join the ranks of small children and old people alike, who get the sickness easily and have to take all the precaution in the world to protect themselves. Now, small children don't have much choice in this option, but old people do. The option is to get a flu shot. Which is something that I am usually really against. I personally believe that injecting yourself purposely with a strand of something that could do extreme damage to you (since the whole reasoning behind getting it is that you are too weak to fight it yourself) is just a dumb idea. I mean, it just seems crazy and dangerous.

But Dr. K and other specialists tend to think that it is not crazy and is not dangerous, and in fact, want me to go a step futher...ready...? When the BRAND NEW H1N1 vaccine comes out...they want me to take it. They want to me to inject myself with a disease that has been known to kill people with weak immune systems just like mine. Oh, and one that is BRAND NEW.

I...I can't. I mean, I know I have to listen to Dr. K, and do as he says, because he has my best interest in mind. But I can't help but doubt this every step of the way. It just seems like a very bad plan, to load me up with compromising vaccines in hopes that it can in some small way, build up my immune system to near it's former glory. But could you do it? If you were me? Would you put yourself at risk to possibly prevent yourself from getting something that you aren't guaranteed to get in the first place?

Like I said, these are the kinds of decisions I didn't want to have to make. I thought that I would have time to get used to Crohn's before I started dealing with the big stuff. And this, while it may seem like nothing to you, is everything to me. The decision I make is one that will determine how the next few months go for me. I just want to make the right one.

I need to make the right one.

M

Thursday, September 24, 2009

When you date me, you date Crohn's.

I am not a fan of the first date.

I hate the awkwardness of it all. The getting to know you questions, the dull silences, the worry about what the other person is thinking about. It's really not my favorite thing to do. Once I get to really know someone, I'm fine, I'm great, I am totally at ease. But damn it if I don't dread first dates with all the passion in me. Even if I know who I am going on a date with. It just sucks. But I still did it. Just cause I figured one of these dates has to lead to something better, right?

So the other night, a guy friend of mine asked me to go have mexican with him. Not even really an official date mind you, and I said no. Why? Because do you have any idea what mexican could do to me? DO YOU? It could make things horrible and painful for me. But I couldn't tell him I didn't want mexican, because that wouldn't make sense. I am mexican. Of course I like mexican, or I did. But I can't tell him why, I can't tell any possible date why. Because I can barely choke it out to friends I have known for years, and I am supposed to tell a date? HA. So not going to happen.

Dating is supposed to be hard, I get it. I've been doing it for awhile and I know that rarely is it as easy as you wish it would be. But I thought it would get better as I got older. And now it won't. Because now, I have to worry about eating something upsetting on a date because I don't want to talk about it and therefore agree to go somewhere where I place myself in danger of having a flare up.

I know that doesn't seem like anything to you, but you've never had a flare up. I've been to restaurants where that happened during my last flare up, before I knew what was wrong with me. Every bite made me feel like throwing up. My stomach and intestines pain was so intense that I felt like curling up into a ball to make it stop. I had to excuse myself several times during these meals. I would literally sit there just trying to delay the next time I would have to get up and leave, because it was just so embarrassing.

I can't bear to do that on a date, I can't risk doing that on a date. So what do I do? How do I date? If I can't tell them, and something happens, what do I do? I know, I know, telling them upfront would just be the easiest option. But if you've been reading, you know that I am just not ready for that step yet. So what do I do, O brilliant readers?

I miss the days when all I had to worry about was awkward silences.

M

Sunday, September 20, 2009

The Support Staff

You know, I think that if I didn't have anyone I would go crazy. I know that I said I didn't tell anyone, and that's true, but that's not to say that no one knows. And so, in a sense, they have become my support system. My very own legs to stand on. So that when I can't do this, I have them.

First of all, my parents. My parents of course, do the parental things, remind me to take my meds and ask me all through the day how I am doing. But really, it's the little things that make them all stars. Like how they make sure that I always have something that I can eat that won't upset my stomach, even if it means making something extra. Or buying new supplements or meds that will help me with fiber intake or replace protein lost. For reading books on the subject and for watching over me. My parents will always let me cry on their shoulders even if I am too stubborn to do it. They talk me down after I go all crazy and panicky after I read medical journals and horror stories about Crohn's. They never stop telling me that it will be ok.

My brother, who for the most part doesn't talk about it. And I love him for it. He makes fun of my special meals, reminding me that the world does not revolve around me. And I know he doesn't do it to be hateful or rude, he's just trying to make light of it. He keeps me from feeling sorry for myself all the time. He is my big heavy rock, grounding me from floating away sometimes. It's ok that he doesn't want to talk about it, because I don't. And when I'm around him, I don't have to think about it. I know he loves me, and I wouldn't want him to act any other way. I'm his big sister, I have to set some kind of example.

My best friend, who has protected me since we were three years old. Who I fight with from time to time, but when I need her she will always stand right there beside me. I always wanted to be as strong as her, as brave as her, she just always was. She was my big sister and she would make everything better, even scaring away the bullies for me. Now with this bully, she's still doing it, giving me the encouragement and strength I need to fight harder, live stronger. She's my best friend, and I'm glad she's always there for me.

The "stranger", the person I barely know, but I know reads my blog. For letting me talk about it, for listening to everything and always willing to be there for someone they barely know. I can't talk about it with many people, but it's nice to know I can talk about it with them. They show a kindness toward strangers that I didn't know was possible. I'm glad I know them, because their past experience has allowed them to understand what is happening to me, and because they are a great person.

My fellow Crohn's people, who happen to come across this blog, or who I meet. For giving me advice and sharing their experiences with me, for letting me know that I am not alone in all of this. For letting me know that there are people out there fighting just as hard as me and not all of them are horror stories. That people everyday live with this and go on to have happy lives. Thanks for letting me see that.

Those people? They save me. Everyday. They pull me through all of the pain and worry that I have about a disease I know so little about. They make me laugh and they let me cry and I feel better knowing that I have people like them on my side. Living with this is not easy, it's so incredibly hard. It's like a game of Russian Roulette and you never know what will end up happening to you once it starts. But that's life I suppose. My stakes are just higher than most people's.

I know that the biggest support is myself. I know that I am the only one who can really force myself into surviving and living. But I've done the whole do-it-yourself before. I've fixed a lot of my own wounds and trust me when I say it is nice to have people. It's nice to have people in your corner, jeering at the opponent. It makes me stronger. It makes me want to win.

You know those moments, right after all of the pain and suffering, when you have this moment of clarity all of the sudden? Like you realize that everything will be ok? When you could run outside into the night and sing "I Will Survive" at the top of your lungs just because you know you will?

I have those moments because I have those people.

M

Wednesday, September 16, 2009

Hypodontia + Crohn's = ?

When I was 10, my dentists made an interesting discovery during a routine xray exam. I had no upper adult incisors. Now keep in mind that 10 years ago, there were not as many advances in dental work, and doctors were quite baffled. My family went to several dentists to see what they would do to fix me, eventually landing on a dentist who at least had an idea of what to do. Through the next 9 years, he pulled my teeth, gave me braces, corrected my bite, lasered my gums, and gave me a retainer which in all makes a pretty mouth for me, and at some point, passed the torch to my current dentist. Finally, a little over a year and a half ago, I began the year long process of having implants put in. And I was so excited. To finally have a normal mouth, normal teeth, a normal life. It was going to be great.

But it's been 7 surgeries and it's still not done. And it will be a long time before it is done. Why? Because things keep going wrong. The bone is deteriorating (why does everything in me keep doing that?), the implant is at a weird angle, it's not strong enough, there isn't enough to work with...it's amazing what can go wrong. I don't blame my dentist because he has been really nice and has been great about fixing everything. He actually started working with specialists on my case, which is kinda cool. I get discussed among the community! People are following my case! Ha! The medical marvel makes it just a little bit better, kinda balances out the whole misery of it all.

Well, when I got diagnosed with Crohn's, I went ahead and told my dentist so he would be aware. And, being the prepared person that he is, he went ahead and researched it and what happens to me. When I came in today for another surgery, he let me know something I really hadn't known before. That one of the effects of Crohn's is bleeding or swelling gums. Something that may have played a role in my recovery of each and every surgery. Something that could have made recovery more difficult and harder on me. Something that could have played a part in each and every time I have had to start over.

What if it never works? And it's because of Crohn's? What if I never have a real set of teeth? What if I go through life feeling incomplete like this? I have waited my whole life for this, and now once again, something has been compromised by this new thing. It's not fair. I mean, I get the whole life isn't fair but CMON PEOPLE. CUT ME A FREAKING BREAK.

One day, I keep telling myself, one day this will all be better, I will be better. I will live my life and never think about this. I will take my teeth for granted and I will forget what it's like to be without them. I will not blame Crohn's for everything and I will take what God has given me and use it.

One day.

M

Monday, September 14, 2009

What do you say?

I have known, in my day to day life, exactly one person with Crohn's. She was my dance teacher and I never really understood what was wrong with her. I knew that she was sick and that sometimes she wouldn't feel up to some things, but I never knew what was wrong. Even when people would tell me, it wouldn't really register.

Once I got my diagnosis, I got into contact with someone that still knew her, and asked if they would ask her if she would be willing to talk to me. She said yes and gave my friend her number. I've had it for two weeks, and I haven't called her yet.

I mean, what do I say? "I know you have this crippling illness and so do I, how do I deal?" I mean, what am I supposed to say? I don't even tell my friends and yet I am willing to spill my guts out to someone I haven't talked to in years? How do I do that? What do I say? I mean, do I even have questions to ask her? If every one's case is different, then I don't know what she can do for me. But it would be nice to talk about it. I just don't know what to do.

This telling people. It's hard. I still am not really telling people. Because I'm not ready to have to explain my future over and over again. But someone who knows? It might be better, it might help. I've heard of support groups but never really thought about going. It's almost as though this is my support group. Those who stumble along this post and read and leave comments, those are the ones with the advice and help. Do I go somewhere where I sit and talk about my feelings? How scared I am?

Maybe I'll call her tomorrow, maybe next week. I may never feel ready to know what I am facing from someone who lives it. A doctor telling me is one thing, a first hand experience is something different. To know it all from someone who lives it, to hear about what is going to happen or could happen, it makes all the difference in the world. We'll see...

M

Thursday, September 10, 2009

You know it's bad when...

your mom puts you on the church's prayer list. That is when you know it's bad.

My mom is one of those people who doesn't pray for the little things. She always tells me how God has bigger problems than some of the small stuff that people pray for. And for the most part, I agree. There are people with worse problems and worse lives than the ones most people pray for.

But yesterday, I got a card from a member of that church that I rarely set foot in. And today, I got another one. And I asked my parents how they knew that I was ill, to which my mom told me what she had done. How she had just asked them to pray for me and my illness. And I feel selfish. As though I am taking God's ears away from those who really need it to listen to the prayers for me. Those who go to church and pray deserve it. I don't go to church, and I don't pray that much other than the mumble of thanks over the dinner table when my thumb is the last one up (it's a family thing). I don't deserve it.

So I tend to look at it this way. With every pang I feel in my lower abdomen, with every stomach cramp I feel after I eat something bad, with every moment I think about my future life, I think of those for who it's worse for. Those who are on diets of applesauce or can't eat solids. Or those who have feet after feet of their intestines removed, or live most of their days in unbearable pain. And my pain or my bothers don't matter. Because it's the only way I can help them. I can make myself seem so fine that no one will pray for me, and then maybe God will hear all those other sufferer's prayers. And when I do pray? I'll pray for a cure.

So if there is someone out there reading this, if someone is praying for me. Pray for all of us. Pray for a cure, or a new medicine to ease the suffering of all those with Crohn's. Please don't just pray for me. Pray for us all.

M

Tuesday, September 8, 2009

I'm not ok.

I haven't told many people about my Crohn's. I let them think it was IBS and in a way it is, so that's how I justify that. But the truth is that I am lying to them. I'm lying to everyone.

I lie to my family when they ask me if I'm ok. I can't tell them how I really feel, I can't tell them how scared I am. All I have to do is say the word and my family starts getting that look, that sad look. And I don't want that. I want to live my life. And while they mean well, they can't possibly carry this burden for me. I have to carry it for myself. Although I would rather go cry to my mommy and ask her to make it all better, this isn't something that she can fix. I can't get this monster chased out of my closet and I can't have them hold my hand as I walk through life. This is my illness, my disease, and I cannot and will not let it ruin their lives to. So yes, I lie and say that I am fine, and lie and say that I don't care. But that's not it.

I lie to my friends about what I have. I either don't tell them or I tell them it was IBS. Only a few people know and that is only because they needed to know. The last thing I want is to be seen as sick to them. How do you tell your friends that a part of you is deteriorating? How do you tell another 20something that you have a chronic illness? How do you tell them that you can't do this or that because it might make your intestines flare up? I can't. I won't. I'll tell them when the time is right, when I have a flare up or when I need surgery. When I can face this without bursting into tears. When I can tell them and have them know that my life isn't over.

I shouldn't have to be the strong one. I shouldn't have to be the one comforting the crying person on the other end of it all. I should be the scared one. And I am. I just cry when no one's looking. Because life has taught me that you are only as tough to others as you are perceived. I've proven time and time again just how strong I am. I will not let them see me as weak or scared. But sometimes? It'd be nice to cry.

M

Friday, September 4, 2009

A New Way of Looking at Things

I have to admit, I've been secretly having a pity party for myself. I've been struggling to find the silver lining in all of this and so far I really haven't found one. After all, chronic illnesses have a way of making bad things bad. It was looking extremely dim. At least until today.

For one of my classes this semester, I have to intern with a teacher. I chose one that I had previously had and had begun my internship for a couple of weeks prior to the BIG NEWS. But this was my first day back and I had had all sorts of worries about it. What if I had an attack? Should I tell the teacher? Should I just not eat lunch to decrease the chance of attack? In the end, I decided to just play it by ear and not say a word or do anything out of the ordinary, figuring I would have time to tweek the adjustments of my new life.

But once, I got there, for the first time in a week, I didn't think about my Crohns. In fact, it was one of the furthest things from my mind. I was concerned first and foremost for what I was there to do and nothing else, which made me happy, and it wasn't until the end of the day when I realized that I was getting along quite well. I realized that it's doing the things that you love, and doing them with the care and concern that they deserve, that will break me from my pity party, because it's not about the Crohn's, it's about me.

Maybe the thing that will free me from all this is myself. Maybe the things that I love most are going to be the saviors that I need so bad right now. I can and will live my life just as I am supposed to, and no disease will strip me from that. Just because it may make some days harder than others doesn't mean that I'll let it destroy all of my dreams. I won't stop dreaming because of it, in fact, it might make me dream harder. Knowing that I may be crippled some days will make the good ones that I have that much more special. And I know that during the days where it's bad, I'll want to look back on the good.

We can all always use hope. And dreams. And the promise of tomorrow.

M

Wednesday, September 2, 2009

Worst. Diet. Ever.

Crohn's will destroy all of your bad eating habits.
Actually, it will destroy all of your eating habits.

When I started high school, six years ago, I was only so-so thin. I had maintained a good figure till I had to stop dancing that same year. However, stress and crappy cafeteria food will do horrible things to you, and I began to gain weight. By the time I graduated, I was in no way good shape. Luckily, over the next two years, college and work would provide me a better exercise, and added along with my ban on all things carbonated, I dropped about 8 dress sizes, and was pleased.

When the Crohn's flare-up happened? I lost 15 pounds in two weeks. Some days I could barely keep ice chips down and I was in no mood to eat anything. One of the symptoms of Crohn's by the way, is weight loss and loss of appetite. It was awful. I HATED IT. Being so limited to what I could have made me miserable and I hated that the food I once enjoyed was now taken away from me.

Post flare-up, I took no chances. I had a roast with veggies that was big enough for me to eat throughout the week for whenever I felt that the food my family was preparing was going to upset my stomach. I stayed away from dairy and other foods that were known to upset stomachs, and kept my body as hydrated as I could with water. But that doesn't save me from picking the wrong foods sometimes, and I then deal with the consequences. I feel like my life has become just one huge list of don'ts. Don't eat this, don't eat that, watch out for this, watch out for that.

I'm still losing weight, and it worries me. I mean, I'm not stick figured now. My hourglass figure still is, although now the proportions are smaller, and I still maintain them as proudly as one can. But this isn't the way I wanted it to be. I wanted to work for a better physique, not have it because I have a chronic illness.

I hate that this will be the rest of my life. That I will never be able to just pig out with the girls again or get crazy drunk on my 21st Birthday. Or eat my favorite meals without wondering if eat delicious bite will lead to pain later. It's another lesson that I wonder if I should even whine about. I have a built in diet for the rest of my life, and will be guarentted to never break it.

I just wonder....

Is this any way to live?

M

Tuesday, September 1, 2009

I have Crohn's.

I have Crohns.

It sounds funny. I mean, it sounds like something old people, not twenty year olds. It doesn't sound like something you hear everyday. It sounds like a death sentence.

I suppose, to really understand, we have to go back to the start. Let's visit two months ago. Quite unexpectedly and without much warning I started experiencing pain in my abdomen and having really bad stomach cramps, which in turn, created some very painful bathroom experiences. I at first chalked it up to what I was eating, but soon realized that wasn't the case. After being misdiagnosed twice, my doctor thought it would be a good idea for me to undergo a colonoscopy, which, let me tell you, was not fun. Although, initially, the tests showed no tumors or ulcers, the biopsy was still being processed. Last Friday, my new gastro (we'll call him Dr. K)do delivered my death sentence, Crohn's.

Which, to be fair it isn't. For those of you who don't know what Crohn's is, the medical dictionary states that Crohn's is:

a form of inflammatory bowel disease (IBD), which involves ongoing (chronic) inflammation of the gastrointestinal tract.

Eww? Yes. Confused? I was. Basically, my intestines are deteriorating. My immune system is attacking it. And as we all know, that can't be good. Crohn's presents itself in most peoples' late teens, early twenties. There is no cure, it is a chronic illness. There is no known reason for what causes it. It just is. I have a mild case, which is good for me. It means that as far as Dr. K is concerned, nothing is bad enough that surgery is a necessity. I can maintain a normal diet and still do normal activities. But that doesn't mean that I won't wake up tomorrow and be in crippling pain, it just means that as far as he knows, I'm safe.

I don't know a whole lot. I don't have all the answers yet. I have no idea what will cause my flare-ups. I have no idea what this will do for my life. But I'll tell you as I go. And whether or not you chose to listen to it is up to you. This is to help me deal with what is happening to me, you guys are just along for the ride.

M