#NHBPM 12 of 30 - Call BS on something

I'd love to go over all the things that are BS in the IBD community from the whole "you don't look sick" comments, the "it's all in your head" doctors, the people who think "if you changed your diet you'd feel better" and of course the stupid as stupid can be commercials for treatment medications that let you know that "Crohn's disease can cause inflammation". No shit.

Instead, I'm calling BS on myself. Yep, you read that right. Well, I'm not doing it on my own - I had help from LOTS of friends. One in particular wrote this:

This picture was taken when I returned to Hawaii after being taken to the mainland by my mom - Courtney shares the story.

"I met Melissa in 2008 when I moved to Hawaii. I had just graduated college in Texas, got married to my husband who was in the Navy, got a job teaching at a private school in Hawaii, and moved to begin my life as a Navy wife. As a new hire at the school we worked at I had no clue who my teaching assistant was, I just knew I had one and her name was Melissa. During our week of training we decided to go to breakfast one morning to get to know each other and talk. I talk all the time and she talked about 10 million times more than I did, and so fast. This was going to be interesting!

We worked together for a few months with me having no idea she was sick. Sometimes she would leave the classroom in a hurry as she told me she might, sometimes she didn’t come to work if she wasn’t feeling great- but I never thought much of it. Sometimes she came to work to be with 24 needy 4 year olds after taking her medicine just so that she didn’t have to take the day off. Melissa was great at covering up - or in her mind - dealing with her disease. It wasn’t until her husband left for a deployment and things took a turn for worse (at the time) did I see how bad it was.

One day she called to tell me she wasn’t coming in and so we got a sub. After school I called to check on her and I could tell she was crying. I told her to get her military ID and whatever else she needed because I was coming to pick her up and we were going to the hospital. I called a mutual friend and told her to pick up her boys.

By the time I played 20 questions in the car we were there and in the ER. They called her back and for the first time I saw the port in her chest - it was always covered by her clothes. I don’t think I knew how bad it really was until we got back and the doctor asked her if they should call her husband home from oversease, she was going to need to be under constant watch. The doctor was talking about her medical history and I sat there with my jaw on the floor. How had I worked with her for this long and not known she was having major issues inside her body!?!? She said "No" to the doctor calling her husband home and I wanted to jump on the table and hit her! Seriously! Again, acting like she could handle it all while obviously falling apart. I decided I was calling her mom. Just a couple days later her mom was in Hawaii to help take care of the boys and Melissa.

After Melissa was discharged she and the boys went to live with her mom. Months later her husband came back from deployment, they moved to the arctic tundra of North Chicago and then moved to the great state of Texas! We have kept in touch and our friendship as grown. She is someone who would do a million things for other people just to stay busy so no one knows the pain she is keeping inside her. She’s selfless, someone you want on your side, a fighter, and a friend. As I think back on almost a year ago when I got the grossest (to most people- but not me!) picture on my phone to now when I get text messages about her lack-there-of butthole I am thankful for my friend. I’m thankful that a doctor finally took the time to listen to her and take out the parts that were literally killing her, I’m thankful that this summer I got to visit her and see her new accessories, and I’m thankful that she is still going to be around to watch her boys grow up and be an advocate for all of the people who suffer from this disease that no one can see.

Thank you for opening my eyes to the disease and being my friend. Love you!"

Me with Courtney's daughter Claire when they visited me this summer.

Sooo, after all that - what is my point? My point is - and I had a totally awesome online discussion with a well known IBD blogger about this - that I completely bullshitted myself for the better part of 9 years when it came to my disease. By BSing myself I was also BSing my friends, as evidenced by the above post. And trust me, Courtney isn't the only one who has called me out on it in the past year. There have been LOTS of people who got pissed because I kept them out when they were willing and able to help.

Maybe I was trying to convince myself - subconsciously - that I wasn't sick? If I kept myself busy, continued to volunteer and work and everything else then everyone else would think I wasn't sick either? WHY was I hiding being sick? I honestly have no CONSCIOUS reason. I can imagine now that I was hiding it because I was embarrassed. I mean who wants to tell people that they are pooping blood and can't get out of bed because of the pain and exhaustion that goes along with it? I didn't want to appear weak. I was SUPERWOMAN! I could do ANYTHING! And I could do it with a chronic illness. Annnnnnnnnnnd, then the walls I had built around me to hide my disease started to crumble. I got sick when no one was around to take care of me and I had to let people into the fortress of Crohn's disease to get help.

So...as I tend to do, I went completely to the other end of the spectrum. If you've been around for the past 11 months you've probably heard me talk more about Crohn's disease than I did in the preceeding 9 years. I came to terms with it, what it meant and how it WILL affect my life. It IS a part of me. It is NOT me - I am so many other things! BUT, since it IS a part of me and always will be - I'm grabbing it by the balls. I won't BS people anymore - I'll tell you when I am not well - and if you've been around the past 9 years you are probably gonna be surprised at how often I DON'T feel well so get used to it. I don't (at least I try not to) whine, bitch, complain and moan about it. I get frustrated by it. It pisses me off. That is all ok. I won't let "it" make me a bullshitter anymore.

I love myself, my family and my friends too much to do that again. If you catch me doing it - you have permission to slap me around.

Find your silver lining and be awesome.

#NHBPM 11 of 30 Re-label and anatomy picture

I couldn't find a picture that showed everything I wanted to re-label with ties to my Crohn's disease. So, I chose the 2 that have the greatest impact on me right now. First up - the fun to talk about GI tract!

I have never claimed to have great skills with computer programs - get out your magnifying glass if you need to on that one!

That WHOLE large intestine/colon is gone along with everything that comes after it. You can imagine that left a LOT of void in the old abdominal cavity. Ha, indeed it did. So, take a look at the female reproductive system:

I'm missing everything behind the vagina(l) canal and uterus. If there is nothing there to support then things start moving around. And move around they have. The "normal" uterus is supposed to be tipped forward as you see in the picture - mine is currently tipped just like that except BACKWARDS. This leads to its own set of problems in the "girly parts" arena that are for another day and another post. Additionally, the vagina(l) canal has also "fallen" for lack of a better term and is now contorted too. Ladies - you can go there in your mind, think if your vagina was curved in such a way....hi painful.

In addition to these anatomy pics I think one for the joints is warranted as well. Though all the labeling would be the same I think? This joint - hurts. This one - hurts. Those over there - they hurt. You get the picture.

I'm sure I could have done much better labeling and finding pictures had I just waited for my medically inclined husband - but I am impatient like that and just wanted to get this posted.

Find your silver lining and be awesome.

#NBPHM 10 of 30 - How to take time for yourself

This is one I have struggled with for a big part of my life. Even before I was "sick". I am a people pleaser - I like to help, to a fault most of the time. I consistently put other's before myself. Which, was fine when it was related to my kids or family. But it started pouring out to school, work, friends, etc. When you combine that with a chronic illness it is a recipe for disaster. At least for me.

For me, I had to learn how to say NO. And consequently understand that it didn't make me less of a parent, wife, military spouse or person to say NO! In all actuality, it made me a better person for having the understanding that I canNOT do it all and live with my Crohn's disease. Sure - there are a LOT of Crohnies out there that go balls to the wall, so why can't I be like them? Because - Crohn's disease has so many variations and extremes it is ridiculous. It is quite a conundrum in the IBD community actually. The severity of disease varies so greatly from person to person that it is sometimes hard to grasp WHAT the problem is!

So, what do I do now that is different from what I did before. I take the pressure off of myself. I don't allow myself to feel guilty when I can't participate in or attend something. I say YES to things because I WANT to do them, not because I feel like I HAVE to do them.

I work very part time. I also have a home based business which allows me to work when I want. I have - for the most part - well behaved children whom I can - sometimes - trust to manage themselves when I just need to lie down for a bit.

I use paper plates on occassion. They will de-compose.

At least once a week we have "make it yourself night" which really means, eat a bowl of cereal and call it dinner.

I started running. If THAT isn't time for myself I don't know what is! It is my thing, my time and I just tie up my shoes and go. Everything will continue on without me for the 30 minutes of excercise and sanity I enjoy.

I have a babysitter on speed dial. And I don't feel bad calling her so that I can do something for myself. I also don't feel bad calling her when I can't do something for myself - as in asking her to "nanny" along on a trip to the zoo or amusement park.

I blog. It is cathartic for me. It is time for myself because as much as I do it to raise awareness and advocate for other people with IBD - I'd be lying if I said it wasn't for me too. It helps ME heal.

Find your silver lining and be awesome!

#NHBPM 9 of 30 - the perfect care package

REMINDER - Be sure to "LIKE" my Facebook page for a chance to win a TOTALLY AWESOME giveaway that will be announced in December!!

As a military spouse, I like to think of myself as a sort of professional care package maker. That's what you are supposed to do when your service member gets deployed - send them care packages of all the things they can't get wherever they are in the world. Things that remind them of home, pictures, notes, letters, etc. In the past I've sent "generic" packages filled with those type of things but as the deployments passed I got more creative and started with theme packages. A particular favorite was Thanksgiving in a box; complete with turkey/pilgrim decorations, table setting and centerpiece, canned turkey, instant stuffing and lots of other goodies. I was pretty proud of that one - and my husband told me the other guys in his unit were impressed too.

So, the prompt for today is a care package to a patient with Crohn's disease. That's just another theme for me to work from! I'm going out on a limb and moving forward on the assumpmtion that this patient is newly diagnosed. I can do that, it's my blog post.

First thing is the link to CCFA as well as contact info for the local support group. I wish this information would have been given to me upon diagnosis - I kinda just go thrown to the wolves. "You have Crohn's disesase - here is your medicine, see you in 6 weeks." Oooookay?

You'll also need a butt load of patience. I'd probably make a cute little jar and decorate it to reflect patience and fill it with cotton balls or something of the like. This disease is not an easy one; everyone's Crohn's is different - reacts to different medications, flares for different reasons, runs the gamut from mild to extreme. It is a learning process for everyone - including your doctor so be sure to have patience.

Knowledge - arm yourself with it. I don't want to dictate what ways you gather that knowledge so I will just make a few suggestions. The internet is full of messageboards, blogs and Facebook pages all dealing with IBD/Crohn's disease. Google it and then go reading! Find somewhere you feel comfortable and become an active participant - even as the "new patient" you have much to offer those who may not have a definitive diagnosis yet. Read, read, read! Books, articles, research studies - the more you know the more empowered you will be. The body you have (no matter how screwed up!) is yours, no one else cares as much about it as you do so UNDERSTAND what is happening with it so you can have informed discussions with your health care providers.

Speaking of health care providers, if you don't like the one you have take control and seek out a new one. This is a great time to use that CCFA link or ask on messageboards for people in your area to make some suggestions.

Sometimes I get emails for free subscriptions for magazines. I'd sign you up for one because you may need reading material in the future. You know, for all that time we spend in the bathroom. Or waiting for a doctor's appointment. Or during an infusion. Or a lot of other things. If I could afford to send you a Kindle I would - but damn, my husband serves in the military we're poor.

Coupons for toilet paper. Not the cheapo cardboard kind either, nice fluffy stuff. Personally I'm not a fan of any toilet paper with aloe or other stuff. I don't need anything trying to make things back there worse - just plain ol' cushy TP. Flushable wipes too. And you don't have to get the expensive name brand - I've tried 'em all and the store brand is just as good in this department. Again, stay away from the ones with added stuff like aloe or scent. In my opinion of course.

Diaper rash cream or zinc oxide or something like it. Just like a baby gets sensitive back there, so can you - especially in a flare or when Crohn's has you in the bathroom 30 times in a day. Hopefully you won't have to use it - but if you do, you'll be glad you have it.

And a little inspirational plaque or something like it. Just something you can look at in the bad times and get a little pick me up from.

And my phone number for anytime you need to talk or just need someone to listen.

Find your silver lining and be awesome!

#NHBPM 8 of 30 - Write a letter to your health

Dear Crohn's Disease,

I want to break up. We've been together almost 10 years now, I've got the itch. Don't get me wrong, we have had some REAL adventures together. Remember that one time on the way home from dropping Deegan at school, we had Cameron in the back. You were all like "hey! I'm telling your bowels to go NOW" and I was all "not now, we aren't home yet" and you were all "well, too bad you better find somewhere!" Yeah, that sucked. Trying to get the baby out of the car seat and into the stroller - because I couldn't carry him in, I KNEW I was going straight to the bathroom - then doing the quick step walk careful to not make my stride TOO long for fear everything would just drop out. Only...it didn't matter my stride. You won that day. Thank God Cameron wasn't old enough to understand what was going on and thank God I had towels in the car. Normally people get in the shower completely dressed because they are stone cold drunk. I was sober as sober could be...and humiliated just the same.

I really appreciate you staying away when I was pregnant with Cameron. If something bad would have happened, I don't think I could have ever forgiven you.

My life would definitely be different without you. Better? Worse? I'm not sure. Health wise better I would hope. But my life, my being, my person - without you I wouldn't be so many of those things. You have had input in my choices, developed bits and pieces of my personality, molded my outlook on so many things. I do my best not to regret things or wish they were different, for then so many other things would also change. You take the good with the bad and do the best you can do.

#NHBPM 7 of 30 - Raise awareness for another condition - PCOS/Fertility Issues

My friend PJ writes about her battle...

This may be a 2 part post

When Mel asked me to guest post on her blog I, without thinking, immediately said “yes”.

 Then I realized what I had just committed to.

 I had just committed to saying out loud the things I keep locked away pretty tight in the box at the back of my emotional wardrobe. Upon inspection I find my emotional wardrobe to be kind of a mess and a good spring cleaning is probably in order.

 The exact text that came from Mel is “Wondering if you’d like to write a guest blog for me on fertility issues”

 So there it is.

 Let’s back up.

 I’m PJ.

 I know Mel from our time spent at Great Lakes, IL when my husband was still in the Navy.

 I love Mel, can I say that real quick.

 I don’t think she knows how amazing she is.

 Can we get a moment of appreciation for the woman I lovingly call friend.

 I blog about crafts, DIY, and other random bits of life at Planned in Pencil

I originally started my blog as a more positive place to share my life after my original blog “Confessions of a Sugar Addict” got to be a very dark place for me. Sugar addiction is a whole different post. I could write a book on the drama of dealing with a disease that is not technically recognized by 99% of the world.

 My diagnosis is Insulin Resistant, Poly Cystic Ovarian Syndrome (PCOS), Non-Ovulation Infertility.

 Here’s how it goes. I eat (too much and of not the right food but that goes back to that other issue) my body recognizes sugar and creates insulin, my cells kind of know what to do with the insulin, but not really so I have too much of the stuff. This excess insulin cause two things, hormonal imbalance and body fat. It’s funny because the more you weigh the worse your insulin resistance gets, and the worse your insulin resistance gets the more you weight.

 Anyone else see the issue there? The hormonal imbalance is the part we’re going to discuss today.

Poly Cystic Ovarian Syndrome is a lot more common that you know, you probably know women who have it, you may even know women who have fertility issues because of it… but what you may not know is the toll it takes on your health and your heart.

When I ovulate (which is rare) my ovary does not release an egg like a “normal” ovary, instead a small cyst is formed around the egg. Normally these cysts are small and contained within the ovary, but it is not unheard of for a cyst to grow, and burst and cause extreme pain and damage.

An ultrasound of a PCOS ovary looks like a chocolate chip cookie

Rare ovulation + no egg = no babies.

Women with PCOS are often overweight because of the Insulin Resistance. Although this is not always true because I’ve met women with PCOS that can’t gain a pound if they try! I wish I had that problem! Instead my weight has steadily increased over the years since puberty until I am where I am today. Morbidly Obese (yuck I hate that term!)

 I have lost weight but only if I completely cut out carbs and sugars of all kinds.

So far I have been unsuccessful in breaking the cycle of sugar addiction in my life, it’s not easy folks. 

So you’ve got PCOS… what now?

 For some women no medical intervention is required, they get pregnant and have healthy children without ever knowing they have it.

 For others, like myself, even after years of trying they never achieve a pregnancy.

I decided at the beginning of this journey that I would take all the pills they could throw at me, but that I wasn’t willing to put my body through IVR or IVF (link to definitions).

 I have gone through fertility treatment cycles including a medicine to chemically induce a cycle, and then another to force ovulation (Clomid),followed by progesterone suppositories (I’ll let your imagine figure out what I had to do with that!)

This works for a lot of women with PCOS, but I was not one of them.

 In the almost 10 years since my husband and I married I have never gotten pregnant. (“But you sure do have fun practicing” was a joke that was appreciated by no infertile woman ever)

 This was all during the time that my husband was actively serving in the US Navy. Our treatment cycles were often disrupted by work ups, sorties, underway periods and deployments.  Maybe with a normal schedule we would have had better luck, I don't know.

Now however T is out of the Navy, we're re-establishing our lives, finding jobs, creating a support network.  It's not the first priority on our list of things to do right now (heck, get insurance is numero uno)

Someday we hope to adopt.

Our road to parenthood is not going to be normal, or easy, but I do think it's going to be worth it.

#NHBPM 6 of 30 - Favorite blogs

I hate to call anything favorite because each of the blogs is my favorite in its own way. So, we'll just call it a list...or as I refer to it over there "sources of inspiration". Check them out!

Jackie at Blood, Poop & Tears with Facebook page of the same name

Charis at Full Frontal Ostomy and on Facebook at My Doctor Knows Me Best from Behind

The Great Bowel Movement on Facebook at GBM

Sandy on Facebook at IBD, Ostomy and JPouch Support

Shaz on Facebook at Shaz's Ostomy Lounge

Sara at Inflamed and Untamed and on Facebook with the same name.

I've been having an "off" last few days so forgive my tardiness and please check out these blogs/spaces along with additional list in the side bar.

Find the silver lining and be awesome today!