Toilets come in all shapes, sizes, and behave in sometimes odd manners~ kind of like humans.

Toilets come in all shapes, sizes, and behave in sometimes odd manners~ kind of like humans. I would like to take you on a journey through the roller coaster ride that is Crohn's Disease and hope you come out of this a little more educated about you're own health.

Sunday, September 11, 2011

Dear Food: I love you. Don't hate me.

So I'm going to stray a little from the blog formula I have been trying to follow... (I've been trying to chronicle the events in order, but I'm scatterbrained.)

Over Labor Day weekend Brandon and I left my son with my mother and we took off to Buffalo NY to see family and eat lots of wonderfully good and fattening Buffalo food. Only in Buffalo will you find REAL pizza (New York style has no substance! Just sayin'...) REAL wings, and REAL sub sandwiches amongst other foodstuffs you can only find in Western New York.

I ate a lot.

And it was good.

For the most part the food behaved itself in my intestines. Or better yet, my intestines behave themselves. Its my digestive tract that is the hater in the relationship...

We stayed with my 90 year old Grandmother and my Aunt (on my dad's side) which I am so grateful for, they have been nothing but supportive in my life and have always tried to take care of me, but here comes the rant:

I know you all care about me and care about my health but please, let me take care of me. I've done all the research, heard all the advice, the suggestions, the stories, etc. etc. etc. I'm the one who has had to "deal" with this for ten years. Yes, my family has had to stand there and watch me go through it, but for a sickness, disease, anything going on internally there is only so much another person can do. You can't go in my body and change stuff around. I have to take care of it. So let me.

Please do not judge my choices or decisions in how to handle my health. I like doctors, for the most part, I've even had a few that actually CARED about me, but what is that old saying? Don't put all your eggs into one basket. Conventional medicine is fine short-term, sometimes it is needed to get stuff under control. But you must treat and heal the body as a whole! Why do we think we can just treat one symptom at a time as it comes along? And why the hell is it not right to treat a DIGESTIVE disorder with DIET?

A doctor once told me that it didn't matter what I ate.

Hell it does!

I don't buy into the magic pill- there is no one cure-all pill- because if you take one pill you will have to take another to counteract the side effects of that one and it becomes a domino effect. There are a lot of diseases that CAN be treated with diet and heaven forbid exercise.

Now listen.

I'm not a medical doctor. Thank God. But I am a person who has struggled with Crohn's Disease for ten years, has had 2 feet of intestines removed, and been on a lot of medicine that did not make the problem go away. Because hello: Crohn's and Colitis are chronic disorders. They don't go away by themselves, and especially with the medicine out there today. Remissions and Flare-ups. That's the waxing and waning of IBS. Oh hell- IBS is something doctors tell you because they don't know what the hell is wrong with you.

I had surgery because I had a "bad side effect" of the medicine I was on for treatment! It made me sick, created abscesses in my intestines. I guess I got out lucky, because these corticosteroids can cause cancer, liver damage, Hepatitis.... the list goes on.

While talking about these things over breakfast in NY my cousin tried to lighten the blow by adding that even if one person has a side effect from a medicine they have to put it on the label. Well sure. I agree- but I don't see how I need to be dependent on these man made chemicals that could possibly kill me.


Let me try to get back on track.

I have no medical insurance. No one will cover me because of this. Supposedly in 2014 insurance companies HAVE to accept me. But geez that is like being a lonely kid at a playground and the other kids are made to play with you because their parents said so.

Yeah we'll see how that goes!

With my income at >10K a year (combined with Brandon's it's >20K) plus a child, I make too much money for Medicaid. When I was a stay at home mom and Brandon made >15K we still made too much money for me to be on Medicaid! One suggestion was to quit work so I could possibly get on Medicaid. I'm sorry, my pride is too big, I will NOT ever be on Welfare in order to gain a crappy health plan offered through the government.

So I started educating myself in natural remedies. I mean, why not? We live in a society filled with processed food that is chock full of chemicals so it can sustain months and years of being on delivery trucks and grocery shelves. How does that seem remotely healthy?

While watching a documentary, an overweight family complained that unhealthy food is cheaper than healthy food. Well damn, budget your money- STOP eating so much, lose weight, your stomach will shrink, and you won't feel so hungry anymore. Plus, that processed food with all those chemicals gets you addicted. That's why its hard to stop.

"OH but that is so hard! It's so easy to say that! But it's so hard!"

Stop your whining and start taking care of yourself!

Everyone does too much sitting around and eating food rather than being active. As human beings we used to have to forage and hunt for food. Our foraging now consists of walking the aisles of Walmart. Now that's exercise! *sarcasm*

I'm one to talk- I hate exercise. Being anemic doesn't help. I would love to exercise and be athletic, but I get tired too quickly. I have to take it in turns.

I'm changing my lifestyle. I shop at the farmers market more often, I eat more healthy foods, I take vitamin supplements and I am not in any pain. I still have problems in my large intestine and rectum, as if you must know, you should, because shit happens.

Funny story:

I was in the restroom at work when some other co-workers came in and one says "it smells in here!" HELLO. It's the bathroom- shit happens. I wonder what it would be like if our feces smelled like flowers? Then I think people would be more willing to talk about their bowel movements....

"Man let me tell you! I had a good BM this morning! Smelled like lilacs! Made me want to stay in the bathroom all day...."


Beef that is 100% grassfed does not give me gas like processed meat from the grocery store does.

Thats a winner in my eyes.

Monday, August 22, 2011

Kansas- Oh There Is No Place Like Home

Here I am, 28 years old- married- with a four month old moving to Kansas. What's in Kansas you say? Well part of my hubby's family... I guess he wanted a change of scenery. Hubby is very impatient (but aren't all men like that?) we were doing Therapeutic Foster Care when I was pregnant, and now that my son was here we wanted to take a little break from it and there were just no jobs available for Hubby. None that made decent enough money to pay our rent that is...

So off to Kansas we go...

How Hubby and I met is a pretty interesting story, so I guess I will tell it for all the world to have a chuckle:

First let me explain a bit more about myself... my marrying Brandon was a little surprising seeing as he really wasn't what people expected me to marry...

He is a good mix of a lot of men in my life, and not "men" as in "past boyfriends", "men" as in "family men" that I love... my dad, my stepfather, my little brother.... its all quite comical.

Oh and that whole "past boyfriends" thing is a complete joke: Brandon was my first and only boyfriend. Lets just say that as a teenager I valued myself as a woman pretty seriously. Sure I had crushes and what-not, but never was wanting a "boyfriend". Let's remember- I was a pretty angry teenager and I still hated men a lot, but gosh I was still attracted to the opposite sex! And let's face it, I was an average girl who wore very little make-up and wore clothes that were too big for her. No teenage boy wants to date a girl who is not showing off her body. Well no boy in Western New York did, to my knowledge... well I did have some boys who chased after me, but that was after high school when all the health crap started going down and I was not interested.

That reminds me of a funny story. As a young adult I worked in one of the local hotels (there are three, two of which are owned by the same company- I worked for the latter company) which a bunch of friends. It was fun while it lasted. One of the maintenance guys who was about my age shown interest in me. I was only interested as a friend because his values were completely different from mine. I went to church. He did not. But he said he would go to church for me. No thank you. Please for the love of all things beautiful do NOT go to church FOR me. You are not doing me any favors. Church and "religion" are supposed to be personal things for yourself. Going to impress somebody totally feeds into every stereotype out there. Gosh.

At first I was friendly to him because I didn't want to hurt his feelings, but he wouldn't stop harassing me so I started being myself. Mean and sarcastic. He was a musician so he wrote a song for me: "Mandy Why Do You Hate Me". He serenaded me in the kitchen while I was eating my meal. Classic. I laughed so hard. I felt kind of bad for him until he asked me if I was a lesbian. Jerk. Just because I was not interested in you doesn't mean that I must be a lesbian! Get over yourself ass.

It was one of those moments that I will never forget! I look back at it fondly. Ha!

Back to my original story... I always thought I would marry someone older than me who was calm and knew *exactly* what he wanted out of life. Tall, brown hair (preferably curly hair) with brown eyes. Well God thought to send me someone totally different.

Brandon is tall, with brown hair (that is slowly fading away), but with striking blue eyes, and he is four years *younger* than me. Now that wouldn't be so bad if it wasn't for the fact that when I met him he had *just* turned 20 years old. I was 24 getting ready to turn 25!

My mother and step-father are 19 years apart, but they met when they were *much* older and had families.... so even though I had seen couples who were years apart in age it was still kind of weird in my eyes to date someone that much younger than me.

I met Brandon at Walmart. Oh Wonderful Walmart! Who doesn't love Walmart? *This girl right here*

I had just gotten back into town from school and needed to do some shopping. I was dressed in jeans, a baggy tee shirt, and a baseball cap. That's certainly appropriate attire for meeting men.... yeah.

When I'm shopping I have a one-track mind, I want to get in, get out, and be done with it. I don't pay attention to who else is in the store or who I may meet there. I just want to get my stuff and get out. So unbeknownst to me there was a young man "checking me out", Brandon worked there in the produce department and he was chatting with the door greeter... This door greeter- she is a gem. Everyone knows her (well this is a small town and she is a native, so its only natural that she know everyone and everyone know her.) my mom chats with her regularly, but at the time I don't think she recognized me as my mother's daughter.

So here are Brandon and the door greeter chatting it up- apparently about women and relationships, the door greeter wanted to hook him up with someone so she was asking him what kind of girl he's interested in. He saw me walk by- pointed at me and said "I'd like to end up with a girl like that".

Well whaddya know.

Friday, August 12, 2011

Continuing the Journey : Take Three

If you just happened upon my little corner of the world wide web, I suggest you go back two posts and start from the beginning to catch up....

Moving to NC at 21 years old, sicker than a dog, happy to be released from adult pressures for the moment; the time has come to figure out what the hell is going on with my body.

Now listen, I'm a completely stubborn and determined person. When I have my eyes set on something, I will not stop until, whatever it is, is in my possession. I did not want to sit and have a pity party. I did not want people lavishing their sympathies on me (quite frankly, don't want it- don't need it), there are others suffering a lot more than me so just because I'm sitting in front of your face doesn't mean I warrant your sympathies and pathetic looks.

With that being said, I signed back up for college.

I took online classes first, then gradually built myself back up to taking campus classes. I commuted an hour each way to campus since my mom lives in the "hills" of NC~

Since being a student again I was able to jump on my mother's health insurance. A year after moving to NC I even went back to work. All the while being fatigued beyond belief and in constant abdominal pain.

No I don't want a gold star sticker.

I just want to prove to any of you pansies out there that if you put your mind to it, stop having a pity party, you can do anything. (Disclaimer: if you are truly too physically tired and fatigued to do stuff- by all means please take care of yourself and get better. I'm not saying your weak for not "doing stuff", just don't let whatever is going on control you or dictate your life.)

Oh I'm sure there were family, friends, acquaintances, who may have thought I was digging my own grave, but then what is living worth if I just sit on my dupa all day long thinking about how physically bad I feel?

How about this: you do what you feel is right for your body, and trust me to do what is right for myself and my body?

During this time between 2001-02, I started college again, went back to work, and was diagnosed with Crohn's Disease. That diagnosis was not easy to get to, it took a lot of doctor appointments, a lot of questions, and a lot of poking where I didn't need to be poked. *hmph*

When I first started to see my mom's primary care physician, my hemoglobin count was four. Yes, single digit, number 4. The normal range is 12-14.

(explanation: your hemoglobin is what carries the oxygen in your blood to various muscles and organs. At a count of four I probably should have been dead.)

Needless to say I was iron-deficient anemic. Had stool samples done and blood was escaping through the wrong end. Which brought me to a Gastroenterologist. Oh what fun to be the only person under 50 years of age in a waiting room. Talk about uncomfortable.

And my doctor didn't have a really good bedside manner. He thought I was taking this as a joke. Well lets just forget that some people laugh out of nervousness! Geez.

There was only one way to treat this: his way. After I did what I was told, took the recommended drugs- some mesalamine, prednisone, and then the hottest corticosteroid out there for Crohn's and Colitis: Pentasa. Oh Pentasa. You worked for a while, then something terrible happened. I got even sicker! Thanks a lot!

I started Pentasa probably in late 2003 or early 2004, after I had been on it about a year an abcess formed and attached itself to the wall of my intestines. During this time I had graduated with my AAS and started a "real job" with some really great and awesome benefits. These totally awesome health benefits paid a surgeon to take two feet of intestine out of my body. Thief!

Ok so it was "diseased" intestine, but it was mine nonetheless.

I felt great for about five years after that. In medical terms I was in "remission". Gosh. The only thing worse than having Crohn's or Colitis is Cancer. Ugh.

In those five years I met my husband who is totally loving and understanding and is overall really great for being a male. *sniggering* Ok so I didn't have the greatest male role model in my life, I was a very angry teenager and held a lot of bitterness and hated men. No I was never a lesbian never will be because women are crazy and I have enough of my own baggage to carry thankyouverymuch.

I apologize for stammering and ranting, I feel like I'm "talking" really fast. I'm just trying to get a lot out there at once. So let me slow down a little bit...

It is my personal opinion that my anger, bitterness, un-forgiveness, and stress- oh yes the stress, as well as a piss-poor diet led to Crohn's Disease. Mock me if you will, don't be fooled by what the medical industry wants you to believe.

My parents divorced when I was about ten years old, yeah it happens, it still sucks a lot though. My mother remarried to a great guy who treats her like a queen and now they are in a place where he can give her whatever she wants. At the time I hated him. But remember, I hated all men, and my step-father was there so he got all my crap. He's a good man for not leaving my mom. Oh there were hard times, but they stuck through it. I'm glad they did.

Don't get me wrong, I love my father, he's my father. He gave me the X chromosome to be a female. Does that sound too harsh? Well I apologize, but that's about the extent of it. I repeat- I love my father. He is who he is and I've learned that I can't expect him to be something he is not. And that's ok. I didn't even need Dr. Phil to tell me that. My Father in Heaven did.

So through all that baggage and emotional crap I was able to find a good man that puts up with my junk. I love him. Lots.


Back to where I was in my story:

During the almost five years of my remission, I got married, returned to school, had a baby, went on with my life.

Then my wonderful husband wanted to move back to Kansas... and I will end with that for today.

Saturday, January 1, 2011

First Blog : Take Two

Where I left off: 21 years old and moving to North Carolina, just lost my maternal Grandmother and Aunt within the same year. Lost 30 pounds. In a lot of constant abdominal pain. Cannot even stand straight. Sometimes vomiting. I eat but nothing sticks. I'm tired. I'm weak. I just want to sleep. My mother packs my stuff, my cat, and me into a truck and we are off. Bye bye Western New York, bye bye childhood friends, bye bye extended family.

At this time in my life I'm not sure why this turmoil is happening to me. We all knew my Grandmother was dying, she had been in a decline for the better part of a year before she passed, but it doesn't prepare you. Doesn't mean you're ready to let that person go. She had always had health problems, battling polio as a child~ even becoming paralyzed for a time because of it. If it wasn't one thing it was another, but she never let it show. She never let it get her down. My Grandmother was a dynamic person, always seeing the good in people, a woman of unwavering faith, a beautiful artist, she inspired me.

And then.

My Aunt. Scheduled to die within six months of my Grandmother's passing. Diagnosed with Stage 4 Breast Cancer. She didn't realize her health problems were so severe as Breast Cancer. She had back problems, our family has a history of back problems. Those will go away eventually. But they didn't. So when she did go to a doctor it was too late, the cancer had spread thats why her back was so bad.

Not only did I watch my Grandmother die, I watched my Aunt die also. Another strong woman in my life. She was my mother's "second mother", the eldest daughter~ the second eldest of six kids, my mom being the baby, she was there for my mom: disciplining, dressing, feeding, giving advice. Even as a young adult my mother depended on her for so much support. And now her light was fading at a rapid rate.

I had barely begun my adult life and witnessed two supporting figures disappear from existence on this earth. I was devastated. I tried my hardest to keep my faith. The stress consumed me. And it ate me up from the inside out. My Aunt, battling Breast Cancer, offered her home to me because she saw my needs, my struggle to live on my own and go to college, but I couldn't accept it. It was too hard. A part of me wanted to move in so bad to help her and my Uncle out with whatever was needed, but the other part of me was completely mortified to have to witness another loved one slowly pass on. I guess I was selfish. No. I know I was selfish. Too busy feeling sorry for myself at the beautiful woman I was losing, it was easier to visit as often as I could rather than live with it every day until she died.


Doctors have their opinion on why Crohn's Disease decided to make an appearance in my system, the consensus nowadays seems to be a hereditary disorder. Not in my case. I know of no family member suffering from this debilitating disorder. Just me. But I have my own opinion on the "why"s.

Stress was the completing factor that invited Crohn's Disease into my perfectly healthy temple of the Holy Spirit. But stress was the last piece of the puzzle, other pieces played their part and fell into place slowly over the years.

And that is another story for tomorrow. Right now I just finished my dinner, still trying to organize my life, my health, and this blog. Eventually I will complete my journey from eight years ago to now, and then explore how I am going to control this with strictly diet and no meds. I hear you doctors all over the world crying and throwing their arms up in the air at me right now! I see your skeptical looks! And I will not be hindered! These drugs have made me better, but have also cost me a lot of money. And the piggy bank is negative. The odds are already stacked against me, its time to take some real risks.