I remember when I was diagnosed first with gastroparesis.
I had been hearing IBS for so many years. "IBS and stress are you
problems" would say each new doctor I would find to try and help me. So,
when I heard this new word, I had to do some research for sure because this one
sounded scary to me.
I did the one thing that I think bugs some doctors, got
on the internet and started typing in gastroparesis. At first took me awhile to
spell it right despite my computer underlining it every time letting me know it
is misspelled. I am spelling it right, right? Once I started looking my eyes
got bigger and my fear got stronger. This new illness look to be life
threatening. Surely not that, not this kind of illness for me. I just have IBS
and too much stress.
This was in 2008.
For 2 years I had a pretty easy ride with GP (no need to
type it out with you guys, one good thing about having GP sisters and
brothers). I would get full after eating my not 6 small meals a day. I am still
at this point a very serious food addict. Stuffing myself was part of my therapy,
so I would get super full very often. The nausea really started to turn on me.
Acid reflux got worse. Would wake up refluxing all the time. Lifted the head of
the bed up, didn't help. Pain increased in my stomach, right dead center in my
midsection. Up high. No gallbladder or even girl parts to be causing my pain,
so to say my alarm bell was going off would be an understatement. I was getting
worried. This is the middle of 2010.
For some reason, I don't know why, but come November of
2010 things really started to take its first real serious turn. Maybe it was
God’s way of protecting me from overeating during the holidays. Not sure what
caused things to heat up then, but they did. Now, forgive me if my memory isn't
has sharp as it used to be but ....OK , just lost my point. Will come back to
this point in minute, if I remember. November 2010 my life changed. My love
affair with food was losing its charm. My heart was truly broken. Food had been
my source of comfort for so long, since I was a young girl. Back when I was
young I was always running, going...burning calories every day. I have always
enjoyed the outdoors and taking long walks in the woods. Had a mini bike and
would ride it all over the trails my brother and cousin had made. Eating the
way I did from that time until I was in my early 20's had never really given me
a real problem with weight. My overeating was never a problem until I slowed
down and stopped moving. And also I would say in my early 20's was when
depression really started to hit me. Depression and a food addict are not the
best combination. So, I got pretty big.
I made an appointment to see the GI doctor who diagnosed
me. Had not seen him in a while because I had gained a lot of weight and when
you are heavy you dread the scales with a passion. Really did not want to go to
the doctor but the pain, nausea and beginning of some weight loss was
concerning me. I had put GP on the top shelf in the tallest closet in my mind
and tried to forget about it. But here it was falling off that shelf and almost
knocking me out. My GI doctor decided to do a colonoscopy. I asked him could it
be the GP, sure he took one look at my weight and made his conclusion. "No,
Mrs. Clark, I don't think that is the issue". So, I go home with my
prescription for a bunch of yummy tasting turbo laxative and do my dreaded
prep. Oh the prep. Now there is a country music song right there. Drinking that
mess, and I don't care what flavor you get, if you can use Gatorade or
not....it is nothing but some sugar flavored ocean water. Sorry to let all of
you know, but colon prep is salt water from the ocean. (Not really , relax. )
After a long day and night of stripping my colon clean the colonoscopy is done
and what do we find? Nothing. Maybe it is IBS again, I am told by my doctor who
is scratching his head at this point. Sure he is thinking, " How can a fat
woman have gastroparesis?" So, I go home, once again, and get on the
internet. By this time Facebook is up and running. I used it and YouTube to
educate myself on gastroparesis. Found some great information out there from
our G-PACT founder. Even one that has my now motility doctor in it, Dr. Kenneth
Koch, he had been her doctor at one point and was helping her with a college
project, I think that is right. Like I said, my memory is not that sharp, but I
am still on topic, right? What was I saying? Oh! With the support of some
online friends and educating myself I was convinced that the GP was my problem
and I needed someone to help me right away.
My husband is a fireman, a great one I must say. And once
again the fire department family rallied around us and tried to help. My
husband's fire captain recommended a GI doctor that had really helped him. So,
I made the appointment and went to see her with my gastric emptying test in
hand. Now, women can be even more judgmental than men, not a new idea for us
ladies...so when she looked at my weight and the gastric emptying test she said
there was no way I had gastroparesis, the test was wrong. My wind lost its sail
after that appointment. I was running out of GI doctors in my area. Until one
day another fireman buddy came through with a new doctor that his wife
suggested. Said he was the best in my
town. I looked him up and saw that he was in the same practice with an old GI
doctor I use to have many years ago. A female GI doctor I really liked but left
cause I got tired of hearing IBS. I knew that most doctors do not share
patients in the same practice, figured he would never see me. So, what does my
awesome husband Jimmy do? He sends this doctor an email pretty much begging him
to see me. And that worked. I got an appointment right away.
When I met my now "regular" GI doctor, he was
very kind and listened to my complaints with great attention to my complaints
on pain and nausea. Once I finished going over my symptoms he took a look at my
gastric emptying test results and said without skipping a beat, "It's the
gastroparesis." He explained the test results to me, which was the first
time any doctor had done this for me. He explained that 2 hours after eating my
radioactive egg, I had only emptied 28% of it. So, food was just sitting in my
stomach for hours, maybe even days. He quickly referred me to Dr. Koch at Wake
Forest Baptist in Winston Salem, NC.
Now I sit here, it's 2:10 in the a.m., typing on my
computer because I can't go back to sleep. Mainly because I just felt the need
to write this blog. I believe in a higher power that speaks to my spirit and I
really felt that I needed to write this blog. A blog on when things took a turn
for me in my life with GP.
Being in some online support groups, I have made some
email friends and some I have even had the pleasure of talking to on the phone.
I really was starting to see the dark side of GP. Not that there is a bright
side, but I was seeing the affects of GP on the body and mind for the first
time. Met people using feeding tubes. Some had organ transplants. Many suffered
from nausea and pain. And those that threw up all the time, which was never
me....I rarely throw up. And then people started dying. For the first time I
was actually knowing people who had died from GP. That scared me. In the back
of my mind, from the time I was first diagnosed, was that very scared feeling that gastroparesis
was very serious. And for the first time I am getting living proof it is very,
very serious. I had left Facebook for a few months. Let's just say sometimes
being sick and having an outlet like Facebook can sometimes be a bad
combination. The mind is not always clear when in pain and sick to your stomach
24/7. My husband and I just recently joined Facebook, again, this time with a
joint account. Facebook, Twitter, Inspire and websites like these can be very
helpful. Not only can you learn first-hand from those that have GP too but you
can develop friendships and a support system that is so important when living
with a chronic life threatening illness.
It is now 2:25 in the a.m. and I am finally getting to my
point. I think, bear with me.
My point is this. My journey with gastroparesis has
changed. I have taken that dreaded turn with GP I had been reading about online
and hearing about over the phone. I have taken a turn that has me concerned for
my future and that is very scary. Not so much for me but my family; my husband
and daughters. We call ourselves " Four Family." A saying my special
needs daughter Carrie came up with. We have been through so much as a family.
And many times we were all we had. At least in our minds we felt that way.
Looking back now it was never true. We are never alone in this world, never.
Always someone bigger is looking out for us.
I have lost a total of 98 pounds so far. I have an
ileostomy. I am on the maximum dose of nausea medication I can take. My pain
doctor has given me a stronger pain medication. I am now walking around all
slumped over cause of pain and fatigue. Getting to that point of being thin.
Not too thin yet but heading that way it seems. No longer am I having "
flares". It is now just a steady flow of being sick all the time now. The
intensity may vary but it is always there now. Have to set an alarm to wake me
up twice during the night so I can take my pain medication cause if I miss a
dose every 4 hours the pain is off the charts and at times takes a while to
ease off.
I am fearing the dead end on this road. I know before a
person gets to the end, there are many bumps and very sharp turns ahead and
that worries me. Being wife and mom while very sick is very tough. And I think
at times worse for them.
How many of you have reached this point in your journey
with GP/DTP? How many were praying it was a virus that would go away? Or that
this new diet is going to change things for me? This new medication. The
gastric pacemaker. Feeding tubes. And some organ transplants. At some point,
some of us reach the point in the road where we know that things are not
getting better and may never get better. There is a song a good friend shared
with me called, "If the healing doesn't come". I listen to it often
now. Because of my faith, I believe in healing. So there is always going to be
hope. But I am also a realist. I know the facts and all the possibilities. Now
I am not saying I think the end is here for me. Because when I look at our
founder of G-PACT, I am reminded that life can go on for many of us that reach
that place in the road. It can be a tough road, very tough...but living life to
the fullest is possible despite the struggles.
Tonight, well it is now 2:48 in the a.m. (in the a.m. is
from some movie, hence the repeat usage of the phrase) so I need to say
yesterday. My sweet husband Jimmy and I were talking about this illness of
mine. And I told him that no longer am I going to live my life as if I am
dying. No! Not going to give up anymore. Going to change the channel in my head
and start living. There are days when I feel so sick. The pain is too much. I
want to tear this ostomy bag off of me. Want to stay in bed. But thanks to my
faith and lots of prayers, I feel that a new light and a new road are ahead of
me. No longer a dead end in sight.
Life can throw us lemons, right. We all know the saying.
I am not a big fan of lemons so making lemonade has never been a good idea for
me, I wanted chocolate cake. With a side order of pizza and a huge salad. Oh,
sorry my fellow GP//DTP, I know I just used profanity. Time to get off the food
references. What I am trying to say is that life is still there to experience.
We are still useful. We can still make a difference. Stay in the game. Stop
living like the clock is running out of time. We never know when our time is
near. Our time will come when it is the right time. So, until that day
comes...live it up! Make each day special in some way. At the end of the day look at the blessings,
the good things in your life. Nothing is too small to be considered a blessing
or a gift. And remember, the sunshine loves you.
