I posted this in some of the Facebook support groups to which I belong and wanted to share it here as well. I would dearly love to reach those of you who are struggling with gastroparesis and who are not a part of any support groups right now. If I can help you, please contact me at gpfightingforchange@gmail.com.
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I realize that some of you do not know me, and so this post may
seem a bit odd to you. I apologize for that. I get a little mushy sometimes and
have to post these kinds of things. I have many friends here, and this is the
only way I know to reach them. I just want you all to know how thankful I am
for everyone here, how much I care about you all, and how badly I want to help.
You are the first thing on my mind each morning and the last thing on my mind
each night. I come into the groups every day, and no matter how poor I am
feeling, I know someone here will understand. I see how much time, effort, and
care so many of you put into this group every day, and I am so touched by your
dedication. We are all sick; yet, so many of you take the time to come in here
every single day and try to make a difference for others who are struggling –
people you do not even know. You give advice, offer insight, comfort and pray
for those who are hurting, and just generally do whatever you can to make
others feel better and help them get through the day. Sometimes, all anyone can
offer is a kind word, a little encouragement, a story, or even just a little
sticker comment. But you know, sometimes that is enough. Sometimes that is what
makes the difference between hope and despair for a person who sees no light at
the end of the tunnel. I want you to
know that you are important and that what you do matters. You mean the world to me, and because of
that, I will never stop fighting for you, for us.
I want you to know also that
I see the physical agony you endure on a daily basis. Beyond the struggle to
somehow meet our nutritional needs without experiencing tremendous pain and
nausea, I see that many of you are in and out of emergency rooms, must tolerate
frequent and/or lengthy hospital stays, and are forced to suffer through
seemingly endless surgeries and procedures.
I see that many of you have no effective medications and that you
are denied insurance coverage for the few necessary medications, treatments,
and supplies you do have. I see that you are frequently mistreated and even
downright abused by a medical community that lacks knowledge, understanding,
and the will to help. I see that many of these same medical
"professionals" lack even the desire to help -- and treat you as if
you were nuisances to be dismissed without so much as an ounce of concern. I
see that you are made to feel humiliated; that you are treated as
hypochondriacs and drug abusers; that you are pushed out their doors without
receiving any help and without any guidance as to where you might go for such
assistance. I see that your pleas for
help are ignored, mocked, and fall on deaf ears. I read stories from those of you who cry out in agony while lying
in a hospital bed being denied pain medications. I hear you when you say that
the doctors tell you there is nothing else they can do for you, and I see the
anguish this causes you and your loved ones.
I want you to know that
I see your personal struggles as well as your physical struggles. I see how so many of you have no one. You
have no one to fight for you, and you have no one to comfort you at the end of
the day. You have family members who do not understand -- who sometimes do not
even make the slightest effort to understand. You have friends who have
deserted you. You have financial hardships. Some of you live alone and do not
even get the chance to feel a comforting touch at the end of the evening. There
is no one to take you out; no one to help you complete the household chores and
errands; no one to even talk to you or hold you at the end of the evening. That
is a huge burden to bear, even for a healthy person, but to have to endure it
on top of a chronic illness... well, it is overwhelming to think about. My
heart breaks for you. I wish so badly that I could change your situation. No
one should have to live that way.
Most of the time, I have
a very positive attitude. I have never
believed in giving up or not fighting, and so I post comments that reflect
that. I am very blessed. I have a fantastic support system within my family and
a strong belief in God. I pray for us all every day. These things are of great help to me. But I
know it is not that way for everyone here.
I cannot take away that pain, no matter how badly I desire it; but I can
tell you that you are never alone here. I care. So many people here care. I
realize it is not the same as being there with a physical presence, but I hope
it helps you some to know that so many of us are here for you. I can also tell you that I am not
willing to accept this situation. I am not willing to say that we cannot change
our circumstances. Many of us are fighting
to change things. We are writing our elected officials; we are contacting the
media; and we are pushing medical facilities, insurance groups, and anyone else
we can think of to do what is right. We are fighting for research funding, for
better treatment options, and for better educated and more compassionate
medical professionals. We are
doing everything we can think of to help.
I hope when you see our posts regarding petitions, bills, and
letter-writing campaigns, you will know that we are only doing this because we care
and we want so badly to make things better for all of us.
On a personal level, I
want you to know that I could not get through a single day without you all. And
although I do not always have the answers to all the problems, I care deeply. I
see your posts, and I feel your pain. If there is anything I can ever do to
help, you need only ask. I am not the most knowledgeable person, and I cannot
make all the bad stuff disappear, but I am totally and passionately committed
to our little community. Every single person here matters to me, whether I know
you personally or not, and I will do whatever I can to help you. (I am sick,
like you, so you might have to be patient with me; but please know that I am
trying, and I will not forget you or desert you.) I hope you feel how
appreciated and loved you are – and how much I want to help. I value you all, and because of that, I will
do whatever I can to fight for us and to change our situation. Thank you for all you do! And please do not lose hope! <3
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