Once again I drive the 20 minutes to the clinic, wearing my one glove on my left hand, with my iPad, wordsearch, glasses, pen and hard candy laying in the passenger seat along with the blue bag of "juice".
This trip to the clinic there aren't that many "Crohn's problems" other than the usual aches and pains. Though I am very uncomfortable as I pulled something in my back moving a plant pot believe it or not. All this is minor compared to what others go through each and every day. The more this disease takes from me, the more I see it all pointless to complain. Yes, I have problems with eating, drinking and I go to the bathroom WAY more than the 'normal' person. I'm fatigued all the time, pain some of the time, but I have a strong heart, lungs,......well that's about all I have strong.....
Then yesterday I watched the Ellen show and saw again Tayt. He needs a new heart. But watching this little guy, makes me want to shake my head for the times I feel "sorry" for myself in having this disease. See for yourself...
http://youtu.be/r5XrOS2cz0Q
If you ever feel down, just watch this guy...
Tuesday, March 3, 2015
Monday, March 2, 2015
Tuesday, February 17, 2015
What's Crohn's Like....??
Over the time I've been "blessed" with Crohn's, I can't remember how many times I've been asked, "what's Crohn's?" or my personal favorite, "what's Crohn's like?". Not sure even how to answer the last one. But it got me thinking.....how does one answer the question, what is Crohn's like?
So. Here is my answer from MY perspective (as everyone's Crohn's experience is different)
A crohn-alogy if you will.
Imagine if you will, being tired, exhausted and worn out all the time. Like, if you were to run a marathon at least once...everyday. Then throw in dehydration and the constant dry mouth and thirst. Add to that the knowledge that at any minute, and I mean any minute, you can be in hospital from an intestinal block or a number of other reasons. Mix in frequent bowel movements (with the occasional loss of a pint of blood or two), ten, twenty, thirty times a day. Sometimes 10 times in an hour. Stir in abdominal pain, abscesses, fissures, fistulas, dry skin, scars, hemorrhoids, kidney stones, Iron and B12 deficiencies and a bleeding rectum. The fetal position is one of your favorite ways to lay down. Pillows are your new best friends. Fold in daily doses of pill after pill after pill and monthly liquid doses of a biologic drug slowly dripped directly into your vein that costs more than your first car......
then, and only then, will you get a sense of what ONE persons life is with Crohn's.
....what Crohn's is like.....for him.
.
So. Here is my answer from MY perspective (as everyone's Crohn's experience is different)
A crohn-alogy if you will.
Imagine if you will, being tired, exhausted and worn out all the time. Like, if you were to run a marathon at least once...everyday. Then throw in dehydration and the constant dry mouth and thirst. Add to that the knowledge that at any minute, and I mean any minute, you can be in hospital from an intestinal block or a number of other reasons. Mix in frequent bowel movements (with the occasional loss of a pint of blood or two), ten, twenty, thirty times a day. Sometimes 10 times in an hour. Stir in abdominal pain, abscesses, fissures, fistulas, dry skin, scars, hemorrhoids, kidney stones, Iron and B12 deficiencies and a bleeding rectum. The fetal position is one of your favorite ways to lay down. Pillows are your new best friends. Fold in daily doses of pill after pill after pill and monthly liquid doses of a biologic drug slowly dripped directly into your vein that costs more than your first car......
then, and only then, will you get a sense of what ONE persons life is with Crohn's.
....what Crohn's is like.....for him.
.
Sunday, February 15, 2015
Crohns Awareness
Let's keep this campaign going. Only 6 more reserves needed to start it back up!! I have mine reserved, how about you...??
The more awareness the better
http://teespring.com/crohnsdisawareness?utm_source=twit
The more awareness the better
http://teespring.com/crohnsdisawareness?utm_source=twit
Friday, February 13, 2015
Saturday, February 7, 2015
Crohn's Tips
Crohn's Tip #75 - "make a list of every hospital visit, when, why, meds, doctors and take it with you whenever you go in to emergency"
Crohn's Tips
Crohn's Tip #27 - "drink lots of water prior to infusions. You may really gotta pee, but it'll make your veins "pop" for that IV needle"
Crohn's Tips
Crohn's Tip #1 - "You are not suffering alone - there are millions of "us" right there with you"
.
.
Wednesday, January 28, 2015
You Might Be A Crohnie...
If you scan a building while you're out, not for the exits, but for the bathrooms
...you might be a Crohnie
...you might be a Crohnie
Tuesday, January 20, 2015
Remicade : Day 910
Closing in on "1000 days", but until then, everything is status quo.
A little scare with the infection, but Cypro to the rescue and gone after a few days. And yes, I DID keep the Cypro going for the full 7 days =) even though it cleared up after a few days.
I hope the body keeps liking the "juice" for a long time cuz it's working. There was a guy today with me getting infused, who's been on it for over 5 years.
Keep on keepin on
A little scare with the infection, but Cypro to the rescue and gone after a few days. And yes, I DID keep the Cypro going for the full 7 days =) even though it cleared up after a few days.
I hope the body keeps liking the "juice" for a long time cuz it's working. There was a guy today with me getting infused, who's been on it for over 5 years.
Keep on keepin on
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