The Health Activist’s Writers Month Challenge – Day 23 Technology


Write about how your life would change if there was no social media.

I kind of touched on this is some of the other posts that I have written.  What would I do, or better yet have done, if there were no social media?

No social media.  That means no Facebook, no Twitter, no Instagram, no Pinterest…etc.  That would be almost no interaction with other people with my disease.  Well, for most of my diseased life, I didn’t have any social media.  I grew up and was diagnosed in the 80’s.  There was no internet.  Computers were still in their infancy.  And  I think by now you know how I dealt with my disease.  I ignored it.  I didn’t know anyone else with IBD.  I didn’t talk to anyone about my disease.   I just lived day to day ignorant of what my disease was all about.

In all honesty, I haven’t been on social networks for that long.   I have only been on Facebook for maybe 5 years…Twitter for a little less.  Since I have had my disease for about 25 years, social media has played a small part overall in my life.  However, it has made a major impact.  It has helped me come to terms with what I have.  I have found an outlet to help speak my mind and deal with issues.

Social media has really helped me in one way.  It helped me get the courage to start this blog.  It was only after talking to some people that I decided to do this.  I would never have met them without social media.  It all started with YouTube.  That is where I saw videos of inspiration.   I then went to Facebook to talk to these inspirational people.   Without those two sites, I would still be alone with my disease.

Social media is also allowing me to help others.  One of my main goals now is to help others so they don’t feel alone with their disease….like I did.  Without social media, I probably wouldn’t be successful at it.  I could still write a blog but not many people would know about it or read it.

Our disease is often overlooked.  It doesn’t get the best research.  It doesn’t have tons of money thrown at it.  Many people don’t know what IBD is.  Social media is helping to change all that.  Us IBD Warriors are now coming together and spreading the word.  Thanks to social media, we have a voice now and maybe one day a cure.

The Health Activist’s Writers Month Challenge – Day 22 Day to Day


Write about the things you couldn’t live without – list 10 things you need or love the most.

There is so much in life that I couldn’t live without.  But I will cut it down to 10 things for this post.

1.  My wife – My wife completes me.  She is the yin to my yang.  She lifts supports me and gives me inspiration.

2.  My family – Family is always there when you need them.  We all live in different places and my not talk much, but when they are needed, they are there for me.

3.  My dog – Sable was the first dog I ever had and I can’t imagine how I ever lived without her.  She is there to give love unconditionally and with one look can cheer me up when I am at my lowest.

4. My IBD community – I never knew there was one until about a year and a half ago.  Now look at me.  Doing my own blog, contributing to the community and helping out anyone that needs it.

5. My GI Doc – I have been through a number of different GI doctors.  The one I have now is the best.  He listens to what I have to say and respects my input.

6. My computer – Or more specifically any computer.  The internet has changed my whole world in relation to IBD.  It keeps me in touch with everyone and helps me to learn more.

7.  My Ipod – I don’t know where I would be without my music.  It helps to inspire me and put me in great moods.

8. My job – I may not like my current circumstance, but deep down I love my job.  It reminds me how I can overcome this nasty disease.  Having a job keeps me sane (most of the time)

9. My Kindle – I love to read.  I love to read.  Did I mention I love to read.

10. Wego Health and their Writer’s Challenges – I wasn’t going to put this, but really, it has helped get me out of a writing funk, not once but twice.  It helps give me focus on things to write.

 

The Health Activist’s Writers Month Challenge – Day 21 Adversity


“The flower that blooms in adversity is the rarest and most beautiful of all.” – Mulan True or false? When do you bloom best?

Adversity –  a state, condition, or instance of serious or continued difficulty or adverse fortune (Definition from Merriam-Webster online dictionary)

 

I had to read the prompt a couple of times just to make sure I was understanding this correctly.  I then looked up adversity to make sure I understood the definition correctly (I did).    So basically if you deal with and grow with adversity, you are great.   Thank you for that complement Mulan….was it the actual woman that said it or the Disney character??  Just wondering.

I say all of this because I think someone with a chronic incurable disease has serious or continued difficulty all their life.  I have met so many people now with IBD that have it rough every day.  For some, there is no break in the pain.  For many of us with IBD, living with the difficulty isn’t adversity…it is life.  It becomes who we are.  So yes, these people are very beautiful…and strong..and brave.  They fight their fights and continue to move on with their lives.  That is why I refer to them as IBD Warriors. 

But when do I bloom.  Well, I don’t live the life of chronic pain.  My Crohn’s is mostly under control and manageable.  I am lucky.  But there are times when adversity hits.  I bloom when that adversity does hit.  I look my challenges in the eyes and tell it that I won’t let it stop me.  I am strong and will fight on.  I will never let adversity stop me.   So what if I have to go to the bathroom 30 times a day.  I make the best of it and enjoy the time I am not in there.  So what if you make me nauseous and weak.  That just means I can rest up and catch up on some sleep.    And the best part is that I get to talk with my community and that helps give me the strength to fight adversity.

We are a community of doers.  When the fight comes to one of us, we band together and help each other.  We don’t let one person stand alone.  When adversity hits one of us, it hits all of us.  Instead of being the lone flower in the desert trying to open up, we are like a jungle.  When one of us blooms, we all open up so no one is alone.

The Health Activist’s Writers Month Challenge – Day 20 Burnout


What gets you OUT of the pit of despair when nothing is going your way?

 

This topic got me thinking a lot.  Well, more or reminiscing.  It wasn’t that long ago that I was at my burnout point.  January 2012.  By now if you are a regular reader you know the date.

There I was, constantly running to the bathroom, dealing with cramps, having no appetite and ready to give in.  I was sinking into depression and wanted an end to it all.  Well, not all…I didn’t want to committ suicide..but it did enter my mind.  What I wanted was to be done with my Crohn’s.  I wanted to call my dr and tell him to yank my colon out.  I had had enough.  No meds were working.  I saw no relief ahead and I had no fight left in me.

Basically, I was burned out.  Over the years I have had some depression every now and then.  There were days where I had no energy and didn’t want to get out of bed.  Everytime that brick wall hit, I would just try to keep positive thoughts and would get myself out of my funk quickly.

This time around was different.  I couldn’t think of any reason to go one.  I was dealing with too many emotions and couldn’t handle it.  I felt like a crash test dummy hitting the wall at 100 mph.  My body was giving up and so was I.

And then, as many of you know, I found myself.  I found my voice.  Basically, I found my community.  Where I saw no future for myself, I now saw warriors fighting back and saying “I won’t give up”.  I watched videos from Sara, Kelly and Maggie (you know the names by now) and they showed me that I CAN’T give in.  My life was worth so much more than my disease.

Over the past year I have been doing pretty well.  There have been some times when the diseaes brings me down and I jump back to my community.  So the answer to what gets me out of despair….is YOU.  My IBD community.  Whether it is on Twitter, a group on Facebook or some posting on a IBD website.  My fellow Crohnies (and UCers) help me recover and get my sense of worth back.

Thank You.

The Health Activist’s Writers Month Challenge – Day 19 Vintage


Post a vintage photo of yourself, with a captain about the photo and where you were in terms of your health condition.

 

This is one of those days where I wish we had a choice of topics to talk about.  Instead, this was the only topic available and sadly, I have nothing to offer.

I don’t have pictures of myself while I am sick.  I got sick before the internet and smartphones.  When I was diagnosed, Instagram didn’t exist.  I never ever thought about documenting my journey with this disease.  I never took before and after photos.

That isn’t to say I don’t have pictures of myself.  I have normal pictures of myself pre-Crohns and post-Crohns.  None of them speak about my disease though.  None tell a story of my condition and where I was.  The fact is that I never really knew what I had or what it was about so why would I put it in pictures. 

So sadly, this is a very short post.  But the bright spot is that from time to time I take pictures now so just keep an eye out.  I know in another couple of months I will have some real good ones to share (Take Steps and Get Your Guts In Gear).

The Health Activist’s Writers Month Challenge – Day 18 “I Take It Back”


 Write about a time that you lashed out at someone close to you because of frustration/fear/anger resulting from your health condition and you wish you could take it back. Forgive yourself and let it go.

On the flip side, write about a time that someone said something to you that they wished they could take back. Did you forgive them? Why or why not?

 

Both of these prompts got me thinking long and hard.  I know that CD has interfered with my life at times.  I know I have been angry with myself over it.  But I can’t think of anything that I had said to someone or someone saying something to me that we would both regret…due to my illness.

I know, like most people with IBD, that the disease can mess with our lives.  There are days when we have no energy and don’t want to get out of bed.  There are times when we have pain and don’t even want to speak to people.  And there are days we just can’t get out of the bathroom…even though other people need to use them.

I know my disease has been a topic of discussion in my family more than once.  I know it has messed up days for my wife.   Yes, there have been times that she says I am using my illness to get out of things.  She has said it more out of frustration…and I totally get that.  It is human nature. 

The thing is, we have never had a real fight over it and if she does say something bad, she does apologize and we do talk about it.  I also have at time just been so stressed that I get a short fuse and might explode at times.  But again, it doesn’t become a major thing and I apologize and explain what is going on.

That is the thing about relationships.  Whether it is with a friend or a loved one, you have to be open and honest.  If you do have a fight over the disease, talk it out.  Let the person you are arguing with know how you feel.  Don’t keep it inside.

The Health Activist’s Writers Month Challenge – Day 16 Misinformation


Tell us 3 things that are true about you, your condition, or your Health Activisim.  Tell us 1 lie.  Will we be able to tell the difference?

Ok, I get to tell you 4 different things about me.  The fun in this will be can you tell which one of these things is a lie.  For the fun of it, I won’t tell you which one is a lie.  Instead I would like everyone to leave a message and let me know which one you think is a lie.  Maybe, after this Writer’s Month Challenge is over I will let everyone know which one is a lie.  So, let the fun begin.

1.  I started my activism on 2012 after being in the worst flare of my life.  I was coming off a really bad year.  Not only had I lost my father in law to Ulcerative Colitis but I then went into a flare that made me go to the bathroom around 30 times a day.  I would spend most of the day in the bathroom instead of living my life.

2.  I currently treat my IBD with diet only.  In January of 2012 I went Gluten-Free and have been using this diet as my medicine.  I decided that I was tired of all the side effects from meds so I went off them and decided to use diet only.  I am now in remission and was told as long as I keep up the diet I should stay in remission.

3.  I was diagnosed with Crohn’s Disease at age 15.  Unlike a lot of people, I was diagnosed pretty quickly.    I was sick for about a week and when I started getting worse instead of better, I saw a pediatric GI who put me in a hospital for tests.  After almost a week I had the diagnoses.  Overall it was about 2 weeks.

4.  One of my biggest fears about my disease is that one day I will have to have my colon removed.  In the past this really scared me because I thought my life would be over.  Now I know my life will go on…but it still scares me a lot.

So now you get to guess which one of these statements is false.  Let me know in the comments below.

The Health Activist’s Writers Month Challenge – Day 14 Spread the Love


Thank a few of your fellow Health Activists for what they have done. Call them out by name or twitter handle. Share your love.

This is more of a repeat of day 4.  I have talked about resources then and linked up to a lot of great sites.  I have talked previously about some of the people who are inspirational to me.  I have mentioned many people over the past year.  But in the spirit of this challenge, I will do it again.  Some of these names may seem very familiar.  Some might be new to you.  What I do want to say though is not everyone I mention will have IBD.  Most will, but there have been some inspiring people who have other illnesses.

Sara Ringer – http://www.inflamed-and-untamed.com/ –  @Sara_Ringer

Kelly Fricke – youtube.com/user/Kellbear2…   –  @SickGirlDiary

 Amanda Kasper – http://stopthinkingstartwriting.blogspot.com –    @Akasper513

Adam Scheuer – http://www.ihaveuc.com/ –   @IhaveUC

Marisa Troy – http://keepingthingsinsideisbadformyhealth.wordpress.com/ –   @MarisaTroy

Brian Greenberg – http://www.intenseintestines.org/  –  @BrianIIF

Sean Ahrens – http://crohnology.com/ – @seanahrens

Wade S – http://wadeszworld.tumblr.com  –   @WadeszWorld

Sarah Choueiry – thecrohnsjourneyfoundation.org  –  @SarahChoueiry

Michael A Weiss – http://www.hospitalpatient.com  – @hospitalpatient

Jackie Z – http://www.bloodpooptears.com – @JackieZimm

Ryan Stevens – http://www.crohnsguy.com/ – @ryan_crohnsguy

Alyssa Zeldenrust – loveformutantguts.wordpress.com  – @UnstuffedAlyssa

Charis Kirk – http://fullfrontalostomy.com/ – @OstomyLife

Julie – http://www.semicolongirl.com/ – @SemiColonGirl

Sharon Saeed – https://www.facebook.com/groups/ibdjourneys/  and also http://www.ibdjourneys.com/

Ok, so I know I will probably piss some people off, but this list can go on forever.  If I didn’t add you, I am sorry.  It is no reflection on you.  In fact, I probably just couldn’t think of everyone, so if you would like me to add you, send me an email to aguywithcrohns@gmail.com with your info and I will review it.  If I like it, and I most likely will, I can always add you onto the list.

The Health Activist’s Writers Month Challenge – Day 12 Hindsight


If you could go back in time and talk to yourself (or your loved one) on the day of diagnosis, what would you say?

 

This is a pretty powerful prompt today.  If I could go back in time to talk to myself, my whole life would be different.

First, I was never really scared so I would be there to calm myself.  I think the biggest thing that was going through my head was just wondering what was wrong.  I remember just when I got my diagnoses.  I remember sitting in my bed, being handed some pamphlets and just having a blank stare of bewilderment.  This was all new to me and I had never heard of Ulcerative Colitis or Crohn’s Disease.  I think I was more confused than scared which caused me to deny what I had.

So if I had a future me to talk to, I think it would have been great.  I would sit with myself and explain just what it is I have and how it is going to affect me.  I would explain to myself in basic terms what it is that I have and correct the initial diagnoses.  I remember being told I had UC, because later on when I found a regular GI, not a Pedi GI, he would tell me I have CD because he saw it in my ileum. 

Next I would explain to myself that I am not alone.   I went through life for many years not knowing or talking to anyone that had IBD.  I felt very alone in the world with my disease.  This past year and a half I have met hundreds of people with IBD and I now know I am not alone.  Now of course I was diagnosed pre-internet so I still would have to wait to really meet everyone.  I would however encourage myself to get more involved with CCFA.

Lastly, I would prepare myself for the meds.  I have not had success with medicine and I it has cause a lot of frustration and stress on myself.  I would prepare myself for this.

Now, I know many people would think that if they could go back in time and talk to themselves, that they would probably do most of the same things.  But I would do one more thing.  I would guide myself in job choices and give myself some winning lottery numbers.  Come on, if I could go back in time, I might as well make it worth my while 🙂