Tag Archives: Crohn’s Disease

The Health Activist’s Writers Month Challenge – Day 28 Must Follow!


Create a must follow list for your community on a single social network. Share your top 5-10 tweeters, blogs, or Facebook pages.

I look at this topic and think…I have done this numerous times already.  In fact, we have done this already during this month.  So instead I am going to deviate a little.

Last week, I was awarded the “I am a Part of the Family” award from the wonderful women at Below the radar.  The post can be found here http://belowtheradar002.com/2013/04/23/bursting-hearts/.

I actually talk about Amanda from BTR in a previous post.  She was always in my mind because she has been suffering so long and no doctors could figure out what was wrong.  To know that she thinks of me and my struggles give me comfort that what I set out to do is working.  People are starting to know they are not alone.

So of course to accept this award there are stipulations.

Here are the rules for accepting:

  • Display the award logo on your blog.
  • Link back to the person who nominated you.
  • Nominate 10 others you see as having an impact on your WordPress experience and family
  • Let your 10 Family members know you have awarded them

And here now are my nominations:

1. Louise at http://youngcrohns.wordpress.com/

2. Cetta at http://cettawrites.com/

3. Sara at http://www.inflamed-and-untamed.com/ (not wordpress but still family)

4. Kelly at http://sickgirldiary.tumblr.com/ (Again, not wordpress but still a great family member)

5. Mary Claire at http://resiliencyspace.blogspot.com/ (Ok, so these aren’t WordPress…but Mary is such an inspiration)

6. Christina at http://livingsick.com/

7. Marisa at http://keepingthingsinsideisbadformyhealth.wordpress.com/

8. Shay at http://asizcreatives.wordpress.com/

9. Heidi at http://ostomyoutdoors.com/ (She really shows that an life doesn’t end with an ostomy)

10. Stephen at http://stephendempster.com/

 

Each of you are an inspiration to me.  Keep up the great work and thanks for being there not only for me but for everyone.

The Health Activist’s Writers Month Challenge – Day 27 Titles


If you wrote a book about your life, your community, your condition, or your Health Activism – what would you title it? Come up with 5 working titles.
What about your biography?

This is funny because growing up I wanted to be an author.  I had always loved to read.  As I got older I realized I couldn’t write so well.  So that dream died.

Then I go and start a blog.  What is a blog but just short stories.  My parents read this (hi Mom and Dad) and are always saying I should write a book.  Problem is my memory isn’t the greatest so it would be real hard to write one about my past.  But..I can write one about the present.

So if I was to write a book about my life, my community, my condition or my Health Activism…what would I call it?  Hmmm.  Well here are some ideas.

1) IBD…All Guts, no glory.

2) IBD Warrior – How I Fought the Disease and Won

3) My Life as an IBD Warrior (This one is plain but says a lot)

4) No, IT’S NOT THE FLU!!!

5) Poo!  No, Not the Bear.

The Health Activist’s Writers Month Challenge – Day 26 Pain Free Pass


What’s a day that you wish you could have used a pain-free pass (either in the future or the past)? How would being pain or worry-free impact that day?

As most of you know, I don’t get too much pain from my Crohn’s.  I know there are many out there that have pain all the time.  Whether it is from strictures or inflammation or obstructions, pain is a reality with IBD.  Since I have a mild case, I have been spared the pain…most of the time.

There are some days though we I feel some pain.  For me it feels more like someone touching an irritation.  It is usually dull and annoying.  When I do get these pains, I worry a little because since I don’t normally get them it is usually a sign of a flare or that I am getting sick.

So to answer the first part of the question, I can’t say of any day I wish I didn’t have pain.  It isn’t really part of my life.  In fact part of me likes it because it is like a signal that something is about to happen.

Now if we talked about having a symptom free day….that is another story.  I don’t have pain, but I can go to the bathroom a lot at times.  I get run down and lazy.  My eyes are getting worse.  Rashes don’t heal as fast.  My joints ache at times.  I would gladly give all of this up.  If I had to pick one day, I don’t think I can.  I think  a lot of people might say that for their wedding day they would like to be symptom free.  I know for mine, I was so happy that I didn’t feel nervous so I didn’t have a lot of symptoms that day.

Thinking about my life, I can’t pick just one day where I would like to be symptom or pain free.  Of course I want to, but I just can’t pick One day.  There are times though when I read online when some people have really bad days.   There are days when I read about Kelly, a fellow IBDer who suffers from so much and is always in pain.  On her worse days, I feel like I want to take that pain from her…even if it is just for one day.  I think the activist in me wants to help so I would want to take some of the pain from those that can’t deal.  I wouldn’t mind a day in pain here and there if it meant someone else can be pain free for a while.

This is a nasty disease.  It robs us of so much.  I just would like to be able to give some people back a normal life so they can enjoy what I have been lucky to enjoy.  Everyone deserves to live pain free.

The Health Activist’s Writers Month Challenge – Day 25 Learning


Share something you learned from another Health Activist (that everyone should know).

First I think you need to read this post from Amanda http://stopthinkingstartwriting.blogspot.com/2013/04/we-know-our-bodies-best.html

I am using this post as a good example.  I have known Amanda from online only.  We were introduced through another activist.  When we were introduced, Amanda had been sick for some time and couldn’t seem to find a diagnosis.  She presented with symptoms of IBD but no GI could seem to find anything.

Throughout time, she would have her good days and her bad days.  But through it all Amanda would not give in.  Even when doctors would tell her nothing is wrong she would fight and look for another doctor.  Eventually some diagnoses would come it but they wouldn’t be the big one she was needing.

Now, she finally has the diagnoses she was waiting for and reason everyone should know this.  She has Mast Cell Hyperplasia (consistent with Mastocytic Enterocolitis).  Now most of you, and I was one of them, probably have never heard of these terms..but Mastocytic Enterocolitis is a form of IBD.

Many people think IBD is only Crohn’s Disease and Ulcerative Colitis.  Those are the 2 main diseases but there are others.  ME is one of those others.  I have often only talked about the former two.  Now I have another disease to learn about and possibly talk about.

I look forward to learning another form of IBD and I look forward to our newest IBD Warrior and her challenges to now beat this disease and heal up.

——————————————————————————————————————————————————–

 

This is being added after this post was already posted.

I have done some research…and was shocked to read what I did.  Turns out Mastocytic Enterocolitis (ME) isn’t IBD.  It is similar to IBS.  ME isn’t chronic and is very treatable.  Here is one link that is reputable:

http://rarediseases.info.nih.gov/gard/10176/mastocytic-enterocolitis/case/24223/case-questions

Amanda, I don’t know if maybe you were led astray by a doctor.  Just know that I and many others still care and hope you do get better.  From the looks of it, you will and real fast.  The treatment is a simple one and I wish all disease were easily treated like ME.

I am sorry if I offended anyone that took offense for me saying it was IBD.  I didn’t do the research ahead of time and just got excited that Amanda had a diagnoses.

The Health Activist’s Writers Month Challenge – Day 24 Wordless Wednesday


Create a Pinterest board for your health focus. Pin 3 things. Share the image.

I actually have 2 boards for IBD on Pinterest.  They haven’t been updated in a awhile.  If you would like to add anything to them, let me know.

Here are my boards:

Enjoy

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).