Here is an article I read that stood out to me because I face the same challenges every day.
I hope others that suffer from some form of Chronic pain can find hope that your not alone and the best thing you can do it fight every day to not let that disease own you or define you.
Editor's note: Debbi
Wynn oversees CNN's Viewer Communications department. She was diagnosed
with Crohn's in 1980 and has undergone nine surgeries.
These are the words I
like to begin each day with, stating my intent out loud. Somehow it
seems if I actually hear it, it's easier to live it and believe it.
I have Crohn's disease,
for which there is no cure -- a disease that requires a daily personal
battle with things most of us prefer not to discuss with others. And for
those who must deal with it, one thing is certain. It's horrible, it's
overwhelming, and it's humiliating.
The humiliation factor is
a major reason so many suffer in silence -- the evidence of the disease
and the treatments are things you just don't tell others about.
So you find yourself
facing the challenges alone -- the pain that literally doubles you over
without warning: nausea, life-threatening bowel obstructions, incontinence, dehydration, intravenous feeding, fatigue and depression.
There is also the ever-present threat of surgery, ostomies
and permanent damage to my body. There are long days without any food
or water, followed by multiple days of clear liquids only.
Each person suffering
from the disease will have their own private hell made up of variations
of these components, but all will share the guarantee of loss of normal
life, and the knowledge that there is no cure. During my worst times
it's been so tough that, exhausted from battling the pain, frustration
and fear, I've cried myself to sleep on the bathroom floor.
There are many, many drugs and some forms of chemotherapy treatments that may bring about remission in Crohn's cases but no guarantees.
And even with remission,
the fear and questions linger -- will it come back? Every healthy day
is a blessing that carries a black cloud on the horizon.
There is relief as you
realize you have a reprieve from the disease but a lingering sense of
anxiety as you contemplate the "what if" that hangs just above your
head, depriving you of real peace. It's a daily struggle to keep the
fear and uncertainty at bay and enjoy the moments that feel "normal."
I rise early so I can
exercise -- exercise helps battle the fatigue that, because of an
inability to absorb nutrition from food, is the out-of-control demon
affecting each day.
I dress for work, pack
my small meals and snacks from the very short list of things that I can
easily digest. Others will see the confinements of my diet as
depressing, but for me they are delicacies that are far preferable to
the too-often-required clear liquid diet. The freedom to consume real food, and to do so by mouth instead of through a tube, is a gift I treasure at each meal, and that I never take for granted.
Saying blessings before
my meals has taken on a new meaning as I give thanks and pray that some
nourishment will be retained as my food speeds through my system. This
is important to prevent dehydration and/or artificial feeding.
Next, I fill my pill
divider with the 13 doses of six medications I will take that day,
almost hourly. Four times a month, I'll give myself a scheduled
injection of vitamin B12. Monthly injections from a caregiver are part
of the drill twice a month, but if today is not one of those days, I'm
good to go.
There will be no
spontaneity to my day. A sudden, last-minute invitation to lunch will be
met with "I'd love to, but I already have plans," a small white lie
that keeps me from having to explain. An invite to dinner, drinks, a
movie or shopping will be met with a similar excuse.
Trying not to appear
anti-social while repeatedly declining all invitations has resulted in a
neat little list of interchangeable excuses. Even a meeting will
require advance notice and preparation if it takes place around a meal.
Menus must be reviewed in advance, and medication dosages slightly
And more often than not,
even with all this preparation it will just turn out to be "a bad day"
and a last-minute cancellation will be unavoidable. Occasionally this
happens around events that are really important to me, such as a wedding
or a family member's funeral.
Missing these events
brings frustration, anger and eventually leaves me in tears. But
acceptance will finally come as I make peace with what I know can't be
So most days, it's
easier to just give in and have no plans. I can replace the anxiety of
"what happens if" with the comfort and security of home, where my safe
foods, medicine, supplies and a comfortable resting place all reside. I
need the downtime and the extra rest, because tomorrow I'll do it all
My battle closely resembles the battle fought by those with colon cancer. Suffering from Crohn's disease can mean debilitating pain, fistula surgery and diarrhea that can be so severe it can bring on dehydration.
Like colon cancer,
remission is possible, but recurrence is probable. Like colon cancer, a
variety of medications and treatments can help with the effects, but
they are strong medications that bring their own set of problems and
While Crohn's disease
itself is not terminal, the complications often result in death. Keeping
it under control requires a real commitment to fight and a resolve to
sustain that commitment every day. The motivation to fight is the strong
desire to not suffer, and deviation often results in serious illness.
Each surgery or flare-up leaves me with a little bigger battle to face,
so I keep fighting.
And yet I do feel lucky
-- lucky to be alive and grateful to be in the midst of a season of
fewer struggles. I am blessed, and I truly understand that in the big
scheme of things this struggle is but a moment.
And in this season of
reprieve. I carry the cold knowledge that there are more than 1 million
other people suffering like me. So few people understand this disease,
yet it's part of the lives of so many people all around them. I hope to
help change that.
I tell my story only to
help bring a little attention to what life is like for those who battle
Crohn's -- because sharing equals attention, and attention equals
And awareness builds
hope that something can be done -- maybe not in my lifetime, but perhaps
in my children's. That's important because the probability of my
children being diagnosed increased the day I was diagnosed.
So today, I share. And today I will fight again, with every intention of winning.
I really can't stand it when emotions build up in me due to an array of circumstances, then it eventually leads to me saying something I don't mean. Especially if I'm talking to someone I love.
I wanted to express to someone what I was going through, but then a sentence popped out during the conversation that was completely untrue and down right hurtful. Why did I say that?...is it just me or have other women experienced this?
I was baffled when I said something that I didn't mean and I immediately regretted saying it. My emotions were high at that moment which I can't stand. For the most part, I'd like to think I'm pretty level headed and don't let things get the better of me. But not that day. I wish I could take it back... and I'm sorry!
I think that if, as a woman, we get to that point where emotions are high and things seem confusing and you can't find the right way to express yourself, that it's better to just not say anything at all.
I should have taken time to think things through on my own, or just leave things as they were. Lashing out, in hopes this person will understand all the jibberish going on in my head when I myself can't put a finger on it, is just not fair to them. Taking a breather till emotions have died down would have spared the person I care about a lot of pain and misunderstandings.
It's so frustrating that this happened, but I'm grateful this person is amazing and was able to see past what I said and take me where I was at. I'm blessed!
Well, this year is starting off with many good things happening in my life. I'm very grateful that I am now dating a wonderful guy who has been a close friend for the past few years. We were able to spend Christmas and New Years break together. He is an amazing person and I feel lucky to have him in my life. Here's a few pictures from the holidays!