My family will tell you that I have always been a Beatles
fan. Paul McCartney puts on the best show ever and I have had the wonderfully
opportunity to see him twice. It wasn’t until March 2012 that this song really
hit home for me. At 23 years old, I was diagnosed with Gastroparesis.
Since 2008 I have
been seeing a Gastroenterologist because I was having a lot of pain, losing
weight, and running to the bathroom several times per day. I was 19 when I had
my first colonoscopy…Turns out that I had symptoms similar to Crohn’s disease,
but I do not have the actual disease. I remember I was so excited to not have a
lifelong disease that had no cure and made me sick. All my sickness did was
cause random infections every 6-8 months with high fevers and the occasional
trip to the hospital. Back in March of this year I went to see my GI doctor
again because I was getting sick and was nauseous constantly. He did some blood
work and decided I needed another colonoscopy. Biopsies were done, Crohn’s was
tested, and I was negative again. After going for another test, a gastric
emptying study, I was told that I had Gastroparesis. I had no clue what this
was and spent the several days leading up to my appointment researching this
condition. All that excitement over not having Crohn’s only to find out I now
had an incurable, irreversible, untreatable condition where food is my enemy.
I have always tried
to be healthy. I exercise regularly, eat healthy, and was actually vegetarian
before I was diagnosed. As a vegetarian I ate lots of salads, fruits, veggies;
the typical stuff you think of when you think vegetarian. Well, with
Gastroparesis comes the long list of foods that have to be avoided, or
modified, in order to be consumed. Raw fruits and veggies, salads, OUT! Long
gone are my days of eating salads (way too hard to digest), and the only raw
fruit I can eat are bananas. If I want fruits or vegetables I have to juice
them or resort to eating baby food.
I didn’t take my diagnosis very seriously at first because
all I was experiencing was a little constant nausea, which my doctor gave me
medication for. I LOVE running so I started training for a half marathon and
was so excited that I could train even though I was technically ‘sick’. I was
registered to run a half marathon on August 11th, 2012. As the weeks
of training went by I noticed I was getting sicker and sicker and couldn’t run
as much on some days and I just kept getting more behind in my training. But I
hadn’t given up, I was going to decide the day before the race if I would try
to run the 13.1 miles or not. I wish I could say that I overcame everything and
was able to do it, but I wasn’t.
Instead we went to a surprise birthday party for an Aunt and
I was so excited to go. My husband and I went to his parents’ house and were
able to stay for about 2 hours before I started getting really sick. I hadn’t
been able to eat much and was down 10lbs in 10 days. I was shaky, nauseous, dizzy,
and was having random twitching. August 11th was now marked as the
first day I had to go to the emergency room with complications from my
Gastroparesis. Turns out my blood pressure was about 100/45, and my potassium
and magnesium were low. I was twitching so badly that they gave me valium to
stop it and after about another hour, and some potassium and magnesium, I was
able to go home…we missed the whole party. Two days later was the first time I
vomited with my condition. I used to get so full and bloated I wished I could
throw up. Now I’m praying I don’t because that will mean I’m progressing even
more. Now I’m afraid to even eat.
My friends and family have been concerned because in the 5
months since I was diagnosed I have done nothing but try to take better care of
myself only to get worse. I am able to eat less and less, and have days where I
can’t even drink water without getting sick. I’m on three different
medications, all used to treat SYMPTOMS, because there is no cure. I have no
hope of my stomach ever returning to normal. I’ve had to accept that my life
now IS my new normal.
My friends and family try to be supportive, and I love them
so much for it. But even they will tell you that they can only be so supportive
of something that they don’t understand. My husband is affected the most; I was
diagnosed right after our one year wedding anniversary. Everything is a
tradeoff for me. I’ve been wanting to go to DC for a while and he offered to
take me one weekend since we had a wedding that day but it wasn’t until 4pm.
Now with DC being a 45 minute drive and the wedding not being until 4pm you’d
think you could go right? WRONG! With gastroparesis you’ll be lucky if you feel
well enough to even go to the wedding, let alone spend all your energy walking around
DC before it.
The current treatment options open to me right now are
feeding tubes and/or a gastric pacemaker. The feeding tube is probably out
since, according to my blood work, even though I only eat 500 calories some
days, I am still managing to give my body what it needs to stay healthy. The
gastric pacemaker has a 50/50 chance of working, and if it doesn’t work, I may
still need the feeding tube in the future. I have an appointment at John’s
Hopkins at the end of the month and I am hoping for more options, but we’ll
see.
Gastroparesis has taken my health, my energy, my running, my
quality of life, and so much more from me. Ever try to go out to eat with
friends and force yourself to eat, even though you’re not feeling well, to
avoid conversations always turning to you and your illness?
Since I was diagnosed, I live in a world where I try to be
grateful for everything. I have a lot of faith in God. His strength is made
perfect in my weakness and His grace is sufficient. When I have bad days I pray
for good days, and when I have good days I praise God for them. I try not to
get frustrated with friends who keep telling me about random things I should
try to get better. I try to comfort the waiter who thinks the food is bad
because it looks like I didn’t eat anything. I try to be grateful that
everyone’s conversation with me starts with “how are you feeling”, instead of
being mad that they even have to ask. I live in a world where I am faithful,
and I try. I have no option other than to try. I have to stay positive, I have
to try. Giving up would mean losing the cheery, bubbly, loving person that I
am…and I refuse to let Gastroparesis take that from me.
Thank you for sharing. I too go through the same thing. I loved salad...hard to see others eat it in front of me. But I don't feel I should ruin their joy of food. My dizzy spells cause me to walk into things and the nausea ... ugg!! I am taking pills, but they are making my pain 100% greater. Supplements, Soup and Smoothies. Yuck, but a necessity for me to live.
ReplyDeleteThank you for sharing! I hate that there are those who suffer as I do, but I am comforted by knowing I am not alone. I really appreciate you sharing.
ReplyDelete