Angry

Angry

This is just a little note talking/explaining one of many emotions myself and many of the folks in the IBD community feel.It’s very hard to have a disease that was caused by a defect in a persons genetic make up, a disease we did nothing to get except for being alive, a disease for which there is no cure or explanation, a disease where frequently when you ask your doctor a question they reply with a “I don’t know”.
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Yes I am angry, in fact I’m mad as hell. Why am I angry, well because of all the stuff 
that happens to myself and my friends that have Inflammatory Bowel Disease.What does it do, well first of all IBD is a very painful disease, very painful.There are days that I am so sick and in so much pain that it is a major accomplishment just getting out of bed and dressing ones self. If you make it to work while you are pain you are generally miserable.

I am angry because of the many gross and disgusting things that have happened such as soiling myself, or having to stop along the road to prevent soiling myself. The nausea and puking are just miserable, nausea is a new symptom for me. Then there are the fistulas… A fistula is extremely painful and terribly gross. What they are or in my case,is an abnormal tube that begins in the rectum and comes out elsewhere in the crotch. A fistula drains fecal matter and puss 24 hours a day year round. 

Angry yeppers, I am angry because this disease p aces so many limitations on my life and the lives of my friends with Crohn’s or ulcerative colitis. Limitations caused by uncertainty that I can find a loo quickly enough in public, limitations caused by severe joint pain. Joint pain that greatly impairs things I want to do such as playing my guitar or work my garden.

I’m bitter that I cannot have ice cream, angry that I can’t have salad, frustrated that I can’t eat popcorn or any corn products period. It’s tough to be woke up several times a night with need to go to the toilet or with leg cramps so severe the only way to calm them is to sit in a tub of very hot water. It’s very upsetting when someone say things like”But you don’t look sick” “I wish I could loose weight and eat what I want” “I think it’s all in your head”, “I understand I had the stomach flu/IBS once”. Yes this is a complain session because I’m angry.
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I don’t like the road Crohn’s disease has put me on, it has unleashed the world of auto immune on me and that makes me angry.Since becoming ill with Crohn’s I’ve contracted several other auto immune diseases. I have Crohn’s related RA, enteropathic arthritis,eye problems and most recently Ankylosing Spondylitis. I really hate what Inflammatory Bowel Disease has done and the pain it cause my friends that have it. It is not a fair disease I/we did not ask for it and did nothing to deserve it, so yes I am angry

Josh Robinson
08/09/2013

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before i got sick

This is good and is how we Chronic Babies live and deal with life! Would be great if the non sick would read this, they still wouldn’t get it, but for maybe just a little understanding.

#purpleproject

the following is a collaborative piece that would simply not exist without the knowledge you have all given to me. i dedicate these words to all of the generous souls who have let me inside of their personal worlds. on the good days.. and on the worst days of their lives. this is my love letter to all of the people who have made an impact on my personal journey.  xoxo, kelly

before i got sick:

  • i didnt understand what health was. i had no idea what crohns disease or ulcerative colitis was. i took what i had for granted – i never knew any difference. “health is never valued until sickness comes”; its true. until you get an eye-opening experience or diagnosis, you tend to take things for granted.
  • i didnt know what the word “remission” meant. other than remission of Cancer. but Remission is real. i capitalize Remission…

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Things the Elderly and Crohnies Have in Common (Sorry in advance to the elderly.)

This is great and so true.

Tree and Leaf: Honesty. Health. Humor.

Last night my mental self and my physical self had an argument over going to the gym. As usual, my brain said to go and my body said “orrrrrrrr you could lay on the floor wrapped in a blanket in front of the heat vent.” (I thought I would grow out of loving to do that someday? Nope.) Now OBVY it isn’t that big of a deal to skip one day at the gym, especially if you aren’t feeling well, but the trouble with me is that if I let floor-laying win the battle, I don’t go back to the gym for a week or more because I am all butt-hurt at myself. Basically, I am super immature.

So anyway, I finally got my butt to the gym a little before 10pm. [Gross.] First I got on the treadmill and I immediately started having horrible belly pain (which is a…

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Homemade Yogurt

How I Make Homemade Yogurt

Josh Robinson 02/14/2014

1.) Bring 2quarts of milk, (whole, raw, 2%, 1%, goat, whatever just so it is animal milk) in a large sauce pan to the temperature of 185 degrees, being careful not to scorch.

2.) Remove from heat and let cool to approximately 110 degrees.

3.) I use an electric 2 quart yogurt maker. Although you can use a large plastic bowl placed in the oven with the light on.

4.) Put 1 cup of non flavored commercial yogurt, I use Greek, in the yogurt maker or bowel, mix 2 cups of cooled milk in with the yogurt and mix.

5.) Mix in the remaining milk with the mixture and mix well.

6.) Plug in the make or place the covered bowl in the oven with the light on.

7.) After 24 hours place internal bowl of yogurt maker or your bowl in the refrigerator wait 6 hours and enjoy.

SCD Yogurt and very IBD / Autism / Celiac Safe

YUMMO!!!

my life is a work-in-progress….i’m perfectly content with that~

Take Steps 2014 video

Hi All,

I thought all of our committee members might enjoy this video. It’s our 2014 Take Steps promotion.

You are all welcome to use it and share in your emails, on your facebook posts, twitter tweets etc.

Enjoy! Have a wonderful weekend~

Lori J. McCann
Walk Manager

Crohn’s & Colitis Foundation of America
Western Pennsylvania/West Virginia Chapter
300 Penn Center Boulevard, Suite 401Pittsburgh, PA 15235
Tel: (412) 823-8272Cell: (412) 417-8599Fax: (412) 823-8276
lmccannwww.ccfa.org

Our Mission: To cure Crohn’s disease and ulcerative colitis, and to improve the quality of life of children and adults affected by these diseases

~my life is a work-in-progress….i’m perfectly content with that~

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Homemade Buttermilk

Homemade Buttermilk

· 1/2 cup cultured buttermilk (from the store or home cultured)

· 1 to 2 quarts skim,1%, 2%, or whole milk from the store or raw milk

· 1 clean, dry quart with a tight fitting two piece lid.

So easy if you blink you’ll miss how to do it.

Pour buttermilk ½ cup into your clean jar. Top off the jar with your plain milk.

Tightly screw lid to the jar and shake for 1 minute.

Place in a warm (but not hot) area out of direct sunlight, I use my kitchen counter.

Let it sit there for 24 hours, until thickened, all the lactose should be gone by then.

Refrigerate when thick. Use within two weeks.

If you re-culture this regularly, you can carry on re-culturing indefinitely.

I always feel like I’m beating the system when I do homemade stuff like this and who doesn’t love beating the system?

 

~my life is a work-in-progress….i’m perfectly content with that~ Continue reading

All in a Days Work.

CROHNS-N-LIPSTICK

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I’ll be the first to admit that when I was diagnosed with Crohn’s Disease I was terrible with taking my medicine. The first three months or so I was great, never missed a dose. As time went on a missed dose here and there turned into me not taking it at all. After my initial hospital stay I didn’t really have any symptoms of Crohn’s, so naturally I wasn’t driven to take my medicine. There was the occasional what I like to call blips or slight flare. Things remained that way up until about the summer of 2012. Around August 2012 symptoms started appearing, nothing too crucial. It was in the winter when the pain (something akin to machetes being tossed around my intestines) or cramps started. I then started taking my medicine periodically.

Fast forward to early summer 2013, I experienced the WORST flare I’ve ever had to date…

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