One Year "Anniversary"

Please forgive me if I am a little “off” today.  I don’t usually remember dates; I am actually really bad about that.  So, I didn’t think I would remember this “anniversary.”  That is pretty foolish of me.  Try as I might, I cannot forget that it was one year ago today that I was diagnosed with gastroparesis – and my life instantly changed forever.  Seems like 10 years ago.  I won’t bother retelling my story.  (Most of you have heard it, and if you haven’t, I can give you a link.  :) ) It is funny; this year has been both harrowing and uplifting at the same time. 

I know there might be some right now who are thinking, “Oh, no, she’s talking about her illness again.  That’s all she ever does.”  But how can I not?  It is my constant companion.  The physical and mental aspects of this disease are unimaginably bad, and I don’t believe anyone who has not experienced it first-hand can truly understand.  Physically, I battle with much pain, exhaustion, and weakness.  Mentally, there is isolation, anxiety, stress, and depression to fight.  And it never goes away.  There is not one single day where I wake up and do not have to face this.  There is never a break, not even for a moment.  Every morning I wake up and know that though I am hungry, if I eat, agony will follow.  Every day I try to balance my hunger and nutritional needs against that pain.  We live in a world centered around food, so that is tough.  It is everywhere.  It is on my television and on my radio; it is on billboards and in magazine ads; it is at every social gathering that exists.  It is in my own house.  Normal people eat.  They eat three entire meals a day – but those of us with GP cannot.  And every time I take a bite, I feel like a complete failure.

I sometimes fall into the trap of believing that because I occasionally give in to my food cravings, and take a mere bite of something, I am weak.  How can something that is a basic need for every human being cause me such agony?  Why do I feel like I have somehow failed because I want what every person on the planet wants?  It is not a case of eating too much and then regretting it; it is taking a bite – a single bite – and then wishing I could take it back.  Food is a basic need, and yet I am denied it by this cruel disease.  I likewise fall into the trap of believing that because I cannot always keep up with daily chores, or work a full-time job, I am lazy.  But I know people who are too weak physically to even make it through their daily hygiene routine.  Many truly expend every ounce of energy they have just trying to fight the pain and nausea.  Are we weak?  Do we lack willpower?  In what world?  Why should any of us ever have to feel that way?  In reality, we are stronger than most.  Do you know how much effort it takes to resist food when you are literally starving?  Do you know how physically exhausting it is to try to tackle even the most basic chores when you have been fighting nausea and pain all day?  You likely do not.  That takes a special kind of willpower and strength that (I hope) most will never experience.  We are truly warriors.

Beyond the physical aspects, there is much mental anguish associated with a chronic illness such as this.  I am mostly confined to my home and can hardly ever leave.  I “joke” that the only time I go out is to a medical appointment – and yet, that is the truth.  I do not travel or “vacation”; I miss my child’s events; and I endure much guilt because I cannot attend even the most important family functions.  But I have it better than most.  Many people I know no longer have any family support, and their friends have deserted them because they cannot participate in the social activities they once did.  Yet, when we mention this, when we talk about feeling alone and isolated, we are labeled “whiners” and “complainers” who are simply seeking pity.  Again I ask: In what world?  We are among the strongest people alive to be able to endure this day upon day – and still have the guts to wake up and do it all over again the next day.

This disease is merciless, and it has made for a rough year.  But as difficult as it has been – still is – it has not been entirely darkness and gloom for me this past year.  When I was first sent home from the hospital (with no clue as to how difficult things would be), I was forced to accept assistance from family and friends.  I had no choice; I simply could not manage daily life without them.  This was a new experience for me.  I do not like being “helped.”  I like to think of myself as self-sufficient.  But this acceptance of help had a strange effect on me.  It softened me.  It forced me to experience humility and dependence on a level previously unknown to me.  It made me view my life and the people in it quite differently, and it marked the first step down a very different path for me, the beginning of many changes.

I have never told anyone this, but a short while after being diagnosed, I actually wrote letters to many of my family members and close friends, basically telling them goodbye.  For the first few awful weeks after being diagnosed, I was unable to imagine I would still be alive at the end of a year’s time; truly, I did not think I would last a few months.  Seemingly overnight, I was thrust into facing just how fragile life is.  This realization, coupled with the kindness shown to me by my family and friends, made it possible for me to put down in writing my deepest feelings for many of the most important people in my life.  For the first time, I understood that they needed to know that their part in my life was not meaningless.  I needed them to know, before I left this world, that they had made a difference to me; that they had meant something to me; that their kindness and love had mattered in my life.  Writing the letters was a very difficult thing to do.  (Believe it or not, I am NOT a person who wishes to talk about my personal feelings.)  To this day, I have been unable to write those letters to my husband and my child, the two people who matter most to me in this world.  Maybe in time, I will grow brave enough to do that, but today, I still cannot face the thought of leaving them.

In any case, the letters were another step in my journey down this difficult path.  But something even more eventful happened after I wrote those letters, something even more eye-opening.  Somehow (through God’s grace, I believe), it occurred to me that I should try to find others who might be experiencing the same thing as me.  I was unable to leave the house, and so I was limited, but I thought maybe I could find others online.  Well, we all know that I did.  And oh, my, what a world these support groups have opened up to me.  These groups (and my Domperidone :) ) have truly saved my life.

I have gained much knowledge about my illness from these groups, of course, but I have gained far more than that.  To begin with, they have given me the courage to share my personal story in a very public way.  That has helped me immensely.  It has shown me that I do not need to hide my vulnerability.  I can open up to others about how I truly feel, and the world will not end.  I have received support, caring, and kindness on a level I never knew existed.  In a matter of a few months, I have made friendships that will last a lifetime.  I can honestly say that if I were miraculously cured tomorrow, I would not desert these people.  I would still be here every day, all day long, talking to them and fighting for them.  (I would just be able to do a far better job of it.)  The people I have met in this “virtual” world have shown me more commitment, more dedication, and more acceptance than I could have imagined.  Because of this otherwise wretched disease, I have met beautiful people, and I have opened up to them and others in my life in ways I previously thought impossible. That is a very good thing.

And that is not the only thing I have gained this past year.  Over the course of this journey, I have developed a passion and purpose in life that I never even knew I had been missing.  I have seen unimaginable suffering and need.  My eyes have been opened to it, and I have discovered that I want to help people – these people.  I know now that I can.  What I am doing matters to me.  (I believe it matters to God as well.  I have made no secret of the fact that I am a Christian.  I do not force that upon people, but my faith is what gets me, personally, through the toughest days.)  And over the last year, I have seen that, though I feel worse physically than I ever have, I grow spiritually stronger every day.  I am often overwhelmed with compassion and concern for the people I have met.  They have touched me deeply, and I am far more aware of the blessings I have been granted.

This is a tough anniversary for me.  I have mixed emotions about it.  I am sick; I am not getting better; and I know I must face this devastating disease every day for the rest of my life, however long that may be.  But it is a good life – one worth living, one worth fighting for.  And there are people in it who matter, who count on me, and who love me.  This gives me hope and strength to go on.  It gets me through each day.  Thank you all for what you do for me and for what you mean to me.  I truly love you all.  

Thankful for My Support Groups

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 

Be Heard!

WE ARE STARVING TO DEATH! WE ARE MISERABLE! WE ARE BEING IGNORED! WE NEED HELP!

There, I have said it. I am not embarrassed -- and the world did not end.

When I got up this morning, I saw a post in my feed from a lady (maybe the sweetest lady on the planet) who was back in the hospital due to complications from GP and other medical issues. She was apologizing for "failing." I read posts like this every single day, all day long -- posts from people who feel as if they are failures or as if they somehow need to apologize for not living up to other people's expectations of them. These are people who try to hide their condition from friends and family; who eat when they are out at social gatherings, even though they know it will cause them pain, so that they won't upset other people; and who try hard to keep from mentioning their illness in any sort of public way for fear of the disdain and harassment that will follow. My heart breaks for them!

I think about what it was like for me when I first got sick, and what it is still like for me now, to some extent. When I was in the hospital, I was so embarrassed about my condition -- about my weakness -- that I would not even let my parents come to visit me. I simply could not be seen like that! I was vomiting, weak, in agony, and almost completely helpless. I was fragile. Yet, I refused medications -- even the pain medications -- because I had to prove that I was not so weak that I had to resort to medications to mask the pain.

Here on Facebook, when I first joined, I would not post or comment in the support groups because I was afraid I might say something foolish. And I never, ever put any kind of GP post on my personal wall. I remember telling my husband that he was not to say anything about how sick I was to anybody. There is too much stigma attached. What was I thinking?

When I posted my story in public for the first time, I panicked about it. I cried, I worried, and I wanted to take it back. I was sure all of my friends and family would think I had lost my mind and would avoid me because of it. Even as recently as last week, I hesitated to post a fundraiser on my wall for fear that it might make my friends uncomfortable, or that it would irritate people seeing it in the feed. We are so afraid of offending others and of appearing to be somehow "lesser" because of our disease! We are so afraid of disappointing others and of not living up to some ideal we (or they) have set for us. But this has to change. This has to change because WE ARE STARVING TO DEATH!

Today, when I get on Facebook, I see my profile picture plastered everywhere. I am on my wall, and in the groups, and on pages, and in the feed. I get so sick of seeing myself some days! But you know what? That is better than the alternative. It is better than where I was 6 months ago -- isolated and alone, trying to deal with this disease without any help and without any understanding, cowering at the thought of "going public." I don't hide this from anyone anymore, and when I am asked about it, I tell the truth. I am writing government representatives, the media, and medical facilities. I am posting in the groups and on my wall -- publicly! I am holding nothing back.

And you know what else? I try to be nice to everyone. (I don't always succeed, but I do always try.) And I will continue to try to be nice to every single individual I meet. I care deeply about people, and I do not want to offend them or make them uncomfortable in any way. But I refuse to apologize to ANYONE for being ill or for addressing my disease in public. I will post on my wall, and I will make it public. I will write anyone who can help us, and give them any sort of personal information they want, if that will help us. I will stand on the street corners and shout it, if that has some value. I will tell my doctor when he is wrong, or not paying attention, or not being helpful. And I will post my stories, my rants, our group and page information, and our fundraiser everywhere possible, for all to see -- without hesitation. I will no longer be made to feel guilty about STARVING!

It is not your fault that you are sick. It is not your fault that your friends, family, doctors, or anyone else do not understand what you are going through. It is not something you should have to hide or be embarrassed about. You do not need to feel guilty because you cannot attend social events, or clean your house, or eat a meal that someone has prepared. You do not need to feel guilty because you miss the family Christmas gathering or your child's recital. You do not need to be embarrassed or feel like a drug addict because you want a medication to help you stand the pain. And you should not have to hide your condition from the world. This is not something minor that is hardly worth mentioning.

WE ARE STARVING TO DEATH! WE ARE MISERABLE! WE ARE BEING IGNORED! WE NEED HELP!

And I am not going to be quiet any longer. So, here are the appropriate links. Please share in the groups, and on your walls, and on telephone poles, if need be. Thanks!

http://www.razoo.com/story/Gastroparesis-Fighting-For-Change

https://www.facebook.com/groups/Gastroparesis.FightingForChange/

https://www.facebook.com/Gastroparesis.FightingForChange.Page

https://www.facebook.com/events/1703813483178455/

https://www.facebook.com/events/777271755660152/?ref=3&ref_newsfeed_story_type=regular

http://www.petition2congress.com/17206/petition-recognizing-gastroparesis-as-disability-by-ssa/

Suffering

I read a Facebook post today from a lady who is afflicted with several life-threatening illnesses, has lost her home due to the financial hardships that accompany such illnesses, and is now facing a health crisis with her child.  She is worn out, stressed out, and tired of fighting.  She really needs a reason to go on.  And I mean the kind of reason that helps you get out of bed when you are in agony, when you are so tired and in such pain that death would be a welcome relief.  She needs help, genuine help.

Sometimes it just hits me when I am reading through posts in my Facebook support groups (as I do every morning) how many people are suffering and how much they are hurting -- physically and mentally. It seems like all I can say to them is that I am sorry. And I am genuinely sorry; those aren't just words to me. I feel so bad for every one of them. But I wish I could do more than say, "Sorry," you know? It seems like so little when I see what everyone is going through. So much suffering!

I am a Christian, and I pray for us all -- for a cure, for an end to our agony, or at least for some meaning to come from it all.  I truly believe God cares; I don't think He has abandoned us and left us to fend for ourselves.  I believe He has a purpose for us as well.  But sometimes it is difficult to see that purpose and to understand why we are all in this situation.  I have read books, heard sermons, and had some quite meaningful conversations on the subject, and sometimes I think I understand with my head... but not really with my heart.  It hurts.  We are all hurting.  I wish I could do something more concrete to help.

Diagnosed with GP

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.