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 15 Sharing


Comment! Pick someone else’s blog post and write a comment to them. Write that comment as your post for today and link back to them to let them know you were inspired.

 

I follow the following person on Twitter and she is an amazing woman.  When I read this post, I saw just how tough she is with her disease.  Here is her post:

http://youngcrohns.wordpress.com/2013/04/12/day-twelve-hindsight/comment-page-1/#comment-117

And here is my response to her post:

This is such a great post. It took me back to my days of being in the hospital sick to the point that I didn’t want to get out of bed. When I got diagnosed, I had no clue what CD or UC were. For you it must have been really scary since you had experience with it already.

Reading your post also made me see just how much has changed over the years. When I got diagnosed IBD wasn’t really known. There weren’t many meds to take. If I wanted information, I had to go to the library because there was no internet. When you got diagnosed, it seems like they kind of knew before the tests what you had. You can then reach out for help via the internet.

I am not saying that IBD is a good thing to have because it isn’t but this is a real good time in history to be diagnosed because there are so many resources, meds, support structures, etc to help us get through this damn disease.

Last, I just want to say, I agree with your last statements. Things are going to happen no matter what. I think we need to just live life and deal with whatever occurs. You are a strong woman. You won’t let your disease stop you. You truly are a IBD Warrior. Thank you for being an inspiration…and an online friend.

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 13 Haiku


 Write a health acrostic for your condition, hashtag, or username! (acrostic = a poem where every letter of a word serves as the first letter of a word or phrase i.e. DOG = Digs Others’ Gardens)

 

Well, I am not a poet.  When it comes to poems, I am a roses are red, violets are blue kind of guy.  I am not any good at making them..let alone creating a haiku.  Sadly, I won’t even attempt it but that is probably for the better.  I will spare you the agony.  But I will keep to the theme a little today with creating my version of the acrostic.  It isn’t a poem but it will have to do.  I decided to just make some words associted with my disease.  Some of you will understand them, some others might not.  I also know some of you will cringe at some of the words as I did typing them.  Enjoy

Chronic

Resection

Ostomies

Humira

Never Ending

Small Bowel

 

Drugs

Intestines

Strictures

Endoscopy

Anemia

Sulfasalazine

Entocort

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 🙂

 

The Health Activist’s Writers Month Challenge – Day 11 Favorites


Write about your favorite social network. Do you love Twitter? Facebook? Pinterest? Why?

I can remember being a kid growing up in the 1980’s.  We would spend the day outside playing with our friends and having fun.  After school we would come home and actually do homework.  If we behaved we got to watch about an hour or two of television before going to bed.  Things were simple and fun.

Now, I can’t imagine not having a computer and on top of that, not having social media.  After I boot up my computer and checking emails, the first sites I go to are social media.  If I have a question or problem, I no longer Google them, but go to a group online and ask away.

But what is my favorite?  Honestly I don’t know.  I spend most of my time when I am home on Facebook.  I have met many people on there and belong to a number of groups…some IBD related, some not.  I was thinking of mentioning some of the groups but then I realized that they are closed groups so the people running them might not want me to mention them.  So I won’t.  But if you have IBD, just do a search and you will find a lot of groups that deal with IBD.  I have met so many great people from these groups and they really have helped me to deal with my disease.  It is the one thing that was always missing from my life…meeting people with my disease.

Another great thing about Facebook is that it is Real Time.  You can chat with people instantly.  Not only have I met some great people, but I have talked with them one to one and gotten to know them better.  I have gotten to speak to some of my IBD idols and not only have they helped me out but I have been able to help them out also.  We can be there to be a pick me up for each other when needed. 

Besides Facebook, I use Twitter a lot.  Again, I have been lucky to meet a lot of people with IBD with this site.  Again, like Facebook, you can talk to someone in real-time.  The only drawback is that you are limited to the amount you can say.  A tweet has to be no more than 140 characters.  That may sound like a lot of letters but believe me, it isn’t.  There can also be a lag at times with Twitter so it isn’t always instant.

The last type of social media site I like, but don’t use as often is YouTube.  It was the site that helped get me started on my IBD journey.  It is where I got inspiration when I was sick.  It is where I learned I wasn’t alone.  It is where I met Sara, Maggie, Kelly, and many other inspirational people.  I myself tried using YouTube to start my blogging journey.  I quickly learned that I was a camera person and I can do better by typing out my thoughts.

Now, there are many more sites out there and some of you might like them.  That is fine.  I am not against sites like Pinterest or Instagram..I just don’t use them much for IBD related things.  Many people do use them so my advice is to go out and explore.  Don’t just take what I have to say as an end all.  Search the internet.  Explore around and find sites that are a good fit for you.  There are so many different websites out there.  Go out there and have some fun.  Just don’t forget to come home for dinner 🙂