I am going to share some pretty personal information. Not a big deal to some of you, I am sure, but
to me, it is huge. I am not the kind of
person who does this – or at least I didn’t used to be. But things have changed for me recently. In early February of 2014, I spent a week in
the hospital and was eventually diagnosed with gastroparesis. I am guessing most people have never heard of
this; I know I had not, prior to be diagnosed.
In any case, I have been thinking about how to help those of us who
struggle daily with GP. And although I
see the value in promoting awareness month, selling shirts for awareness, etc.,
I think maybe people who know very little about this disease need to hear a personal
story. So here goes…
My life changed in ways I could not have imagined –
overnight. One day, I was able to eat at
buffets, if I so desired, and the next day, I was unable to tolerate all foods
and liquids. I was hospitalized with
severe pain and vomiting, put through a battery of tests (including one
particularly terrible one where they forced a tube down my nose and pumped my
stomach), diagnosed, given only a brief explanation of my illness and its
treatment, and sent home. For the next
few weeks, I was on a liquids-only diet, and I was told that I had to gradually
work my way up to soft foods and (eventually) solids. Unfortunately, nothing like that has
occurred. I am able to eat some soft
foods, in tiny amounts, but it is becoming clear to me that I will never again be
able to eat “normal” foods in “normal” amounts.
At first, I told myself that I would not let this stupid
disease define or control me – it simply WOULD NOT be the center of my
life. But as time passed, I began to see
how foolish that was. Every single day,
every second of every day, I think about food.
I see it; I smell it; I cook it and feed it to the other members of my
household; but I cannot have it myself. I
look in the mirror, and I see a skeleton.
I try to eat even small amounts of food, and I am in agony. I am weak and fatigued to levels I didn’t
think were possible. Some mornings, I
don’t think I have enough energy to get out of bed. I can barely concentrate and function enough
to do everyday tasks. And almost every
single night, my husband has to help me up the stairs to bed because he is
afraid that if he doesn’t, I might fall down those stairs. My 11-year-old daughter has seen me vomiting,
screaming in pain, lying on the floor crying, and on the verge of passing out. At times, it has frightened her so much that
she has asked my husband to get me “Life-Alert” for the times when she cannot
be home with me.
I grieve over the fact that I can no longer travel or get
out of the house for much of anything. I
grieve over missing family events and not being able to attend my daughter’s
activities. I grieve over not being able
to go out to eat, or on a picnic, or to another concert, or any of the other
things I know are not possible anymore.
I worry that I will not get to see my daughter graduate, or get married,
or have children. I am not on the verge
of death today (at least, I don’t think I am), but when I look in the mirror
and think about how tired I am, I realize that people like this do not have
long life spans – and it bothers me.
I get frustrated because people do not understand how my
life is affected by all of this. If you
were to see me on the street, you would likely not realize I am this sick. I don’t look that sick. And because most people are unaware of the
effects of GP, they ask me all of the time if I am okay now. I can’t seem to convince them that I am never
going to be okay again – not in the way they mean it. I am told that I “just need to eat,” or that
if I would only try “Activia,” I would be okay.
My own doctor (PCP) accused me of being an anorexic and told my husband
to “watch me.” And though I know people
mean well and are trying their best to help, it still makes me so frustrated.
I am angry because I am a control freak, and I don’t like
having to be a slave to this disease. I
don’t like not being able to do things myself – always having to rely on others
to do them or get help doing them. I
have screamed at, smacked, and pushed my husband away for simply trying to help
me more times than I can count. I have
thrown things (including food) across the room in fits of anger. I have intentionally gone without eating –
even though I know I shouldn’t – just to “show” this disease who is in
control. Crazy, I know! I am angry because I do everything that I am
supposed to do – eat the right things, exercise, and ingest the known
medications – and I am still sick.
I think about the others who have this disease who are so
much worse than I am. There are hundreds
(maybe thousands) of posts in my Facebook feed every day from people who have
had to go to the ER or back in the hospital for dehydration, pain, or other
such conditions. I know so many people
now who have feeding tubes or ports for nutrition. I know many who have developed other serious
conditions because of the GP. I
sometimes look at them and think that this will surely be my future, too, and
it scares me.
There are times when I am in such agony that I can do
nothing but cry – lie on the floor and beg God to just let me die. He doesn’t – and I am so thankful that He
ignores those moments. I mostly have a
good attitude about my situation and try to make the best of it. I am a Christian, and I believe there is much
ahead after we leave this world. I also
feel blessed that I have been given so many years with the best husband and
daughter anyone could imagine. I am
truly thankful for each day I get to spend with them. I do not understand why I
have to have this disease, but God does, and I trust Him.
What I do understand is that it is somehow important to me
to let people know what I go through – what all GP sufferers likely go
through. I am sharing these personal
details in such a public forum because I think it is important for people to
see this disease. But I think it is
equally important to share how much I have been blessed BECAUSE OF this disease
and to let others know how much they matter and how much of a difference they
can make.
I first joined a Facebook support group because I wanted to
know what treatments and medications others like me had found helpful – but I
hated the idea of support groups. I was
there for information only; I just knew I didn’t need anything like support. Not for me!
So foolish! You cannot imagine
the blessing these online groups have been.
I have learned much, for sure, but I have received so much more than
information. I have received more
support, understanding, and kindness than I ever could have dreamed. I have made friends that I feel I have known
for a lifetime. I tell people all of the
time that I hate this disease, but I dearly love all the people I have met
because of it.
I have received help from family members, friends, and
acquaintances beyond measure. My
neighbors have cooked meals for my husband and daughter; they have watched my
child and my pets; they have offered to transport me to and from appointments;
and they have done everything they can to suggest ideas (and foods!) that might
be tolerable for me. My family has come
to visit me, even though I know it is horribly inconvenient for them – and they
have also stayed away when I have asked them to, even though I know they wanted
to be here. I tell you, honestly, every
single person on here has helped me in some way. Some have visited, some have called, some
have done chores and tasks, and some have cheered me up with their stories. Some have played online games with me (and
have taken my mind off my situation for a time), and some have posted pictures,
quotes, or videos that have made me laugh – or cry. All of this has been more of a blessing than
I could have known. You are ALL a
blessing to me – and I want you to know.
Don’t ever be convinced that you can do nothing to help or
that you don’t matter. To those who are
struggling, your efforts to understand, cheerful words, helpful attitude, and other
contributions really can make a difference.
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