Gastroparesis: Fighting For Change Projects for 2016

*NOTE: The blog post today will be a bit different. Our advocacy group, Gastroparesis: Fighting for Change, has begun discussing our various projects and efforts for 2016 -- and WE NEED YOUR HELP!!!!

We wish to accomplish much during the course of this upcoming year, but we cannot do it without your participation. Please consider joining our group. We need PEOPLE TO HELP US FIGHT! Here is the link: https://www.facebook.com/groups/Gastroparesis.FightingForChange/

I have compiled a list of projects that we are pursuing or wish to pursue this year and have posted them below. (I have also included this list as a document in our group files section. The list below is a direct copy of what is posted in our group.) Please read and consider joining our group and participating in all or one of the below projects. We welcome suggestions and creative ideas for additional projects as well!*

*******************************************************************

There are a number of projects we hope to pursue this year.  I will try to list the major ones here and hope to get ideas regarding additional projects you all might like to pursue as a group.  First, and foremost, is getting our bill (HR 2311) passed.  There is no project of greater importance than that, as I see it – but we can pursue other projects simultaneously, I think.  So, here is a list of the basics:

1. HR 2311: We ask that EVERYONE contact their representatives in Congress to get this vital bill passed.  Right now it is in subcommittee, and if we don’t get more support, it will die there.  It needs to make it out of subcommittee and to the full House; then it must make its way through the Senate.  For your convenience, we have set up a link where you can send a letter asking for support for this bill to the entire Congress at https://buildquorum.com/actions/1996.  To date, this letter has only been sent by 416 people.  Quite frankly, in an online community of 10,000+ strong and in a general population of possibly 5 million plus, this is absurd!  We really need your help in getting this letter sent.  Please sign, send, share on your walls, etc.!  I cannot possibly overstate the importance of this bill.  It is pretty much everything we could hope for and would make a great difference if passed.

An even better way to support this bill is to contact your House representatives directly, one-on-one, either via telephone, in person, through e-mail, or by posting on social media sites.  I have included a sample letter in the files section of the group that you may alter and use to send to your congressman.  The file also includes a list of those representatives who would likely be sympathetic to our cause (in table form).  I have included their names, websites, and Twitter handles.  You can find additional contact information for these representatives by visiting their websites.  It is VITAL that they hear from you.  At the very least, you should contact your own representative for your own state district (which you can find by visiting https://www.opencongress.org/people/zipcodelookup or by going to any number of other sites and entering your zip code).  If POSSIBLE, you should contact EVERY member of the lists that are included in this document. 

You may find information and a text of the bill at https://www.govtrack.us/congress/bills/114/hr2311.  Currently, we have only 7 cosponsors for this bill.  GovTrack is giving it only a 2% chance of being enacted.  But YOU can change that!  YOUR REPRESENTATIVES NEED TO HEAR FROM YOU!!!!  I cannot overemphasize the importance of this.  It takes only SECONDS to send these letters.  We should be getting 100% participation in this – and yet we have only 416 signatures at the Quorum site.  WE NEED YOUR HELP!!!!

2. State Proclamations: I will be making a separate post about these, but basically, we need your help in establishing August as Awareness Month in every single state.  We got proclamations approved in 13 out of 50 states last year, and we would love to see them in ALL states this year.  It is very simple to request a proclamation from the governor establishing this in most states, but you MUST BE A RESIDENT OF THE STATE IN ORDER TO REQUEST A PROCLAMATION.  I would love to be able to submit the requests in all 50 states, but I cannot do that because I am only a resident of ONE state.  THIS WILL NOT HAPPEN WITHOUT YOUR HELP!!!!  I will put detailed instructions as to how to go about this (as well as a document with the wording of the proclamation in a separate post.  We have some who have already volunteered to submit requests in their states, and I will post a running list of these and their status.

3. Website & Community Page: We have a website at www.curegp.com that we will be updating as time allows.  I continually make changes there and encourage you to visit.  We also have a community page at https://www.facebook.com/Gastroparesis.FightingForChange.Page/.  If you would be so kind as to “like” our page, we would greatly appreciate it.  This page keeps us in the public eye and reaches people outside of the groups.  It is another way to make the public aware of gastroparesis and our efforts.  The more “likes” and visits we get, the more visible we become.  It is a very simple way to help our cause, and we would greatly appreciate your support!

4. GP Reports: Ms. DST (name omitted)  has been making short video clips that seek to show the “humorous” or “light” side of our community members.  She will provide additional details and information in a separate post, but I wanted to mention it here so that you can be looking for her post.  Currently, Ms. Deb is the only one who has recorded these clips, but we will be seeking to expand this and include clips by other group members on our YouTube channel.  We have even considered doing “interviews” of sorts in the future if we can manage the logistics.  Please let Ms. Deb know if you would be willing to help with this.

5. ER/Doctor Project: I am asking for your help on a project I would like to undertake. I would like to collect stories from you all regarding good and bad experiences you have had with your GIs and/or with the ER. I know these stories are out there because I see them in the support groups every day!  My intention is to use excerpts from some of these (either anonymously or with names -- with your written permission) in a piece I intend to write and send to our buffoons in Congress who do not think we need a bill, or disability, or even an awareness month; to insurance companies and medical associations/facilities; to the FDA; and to any other groups I can find who need to address this situation.

My plans as to how I will go about composing and delivering this piece are a bit sketchy at this point, but I am going to do it in some fashion if I can get people to contribute. What I am requesting from you is that you write your short story/vignette of a single experience (good or bad) that you have had with your GI or ER, in as much detail as possible, along with your feelings about this, and either post it here in the comments or send it to me via PM. I WILL ALSO NEED YOUR WRITTEN STATEMENT THAT I HAVE PERMISSION TO USE YOUR STORY EITHER ANONYMOUSLY OR WITH YOUR NAME (EITHER OPTION OR BOTH IS FINE).

I requested these earlier but have gotten very little response.  I would greatly appreciate your help!  I would love to move forward with this project but cannot without more stories.

6.  GP Store: We have a Fighting for Change store set up at https://www.createphotocalendars.com/Shop/gastroparesisfightingforchange.  Currently, we have only our calendar for sale, but I would like to consider expanding this to include other sales items.  ALL PROCEEDS go directly to the IFFGD and will be used to fund GP research.  The money never touches our hands.  Products are paid for on the site and are shipped directly to the customer from this site as well.  It is a simple way for us to raise much-needed research funds.  Unfortunately, I am not much of a designer, so help with designing t-shirts, totes, etc. would be greatly appreciated!  Please let me know if this is an area where you would like to help.

7.  Petitions: We are still seeking signatures on a couple of petitions that will benefit our gastroparesis community.  The first is a petition to establish a NATIONAL Gastroparesis Awareness Month.  Although we claim August as our awareness month, this has never been made official, and we have never been included on the National Health Observance (NHO) Calendar (http://healthfinder.gov/NHO/nhoyear.aspx?year=2016).  The IFFGD/DHA led a push to get this introduced into Congress last year and were successful in convincing Rep. Gwen Moore to introduce a statement of support for this measure in Congress; however, we have not yet been granted official recognition.  We need to put more pressure on the members of Congress to make this happen.  Don’t we DESERVE an awareness month?  You can sign an online petition to try to get this established at http://www.petition2congress.com/17439/proclamation-to-establish-august-as-gastroparesis-awareness-month/.  PLEASE SIGN!!!!  It takes only seconds!

Thanks to the efforts of RH (name omitted), we also have a petition to try to get the SSA to include GP in their blue book of disabilities as a disabling condition in and of itself.  While this petition does not force legislators/policymakers or the SSA to act, it does put pressure on them to do so.  You can sign this petition at http://www.petition2congress.com/17206/petition-recognizing-gastroparesis-as-disability-by-ssa/ng.

8. Mailing Items: We are also considering beginning a mailing campaign that would include sending some small token, along with a letter asking for help in spreading awareness of GP, to those who might be helpful in our efforts.  Ideally, we would like to mail a spoon, green ribbon, or some other small symbol to legislators, medical professionals, insurance companies, the media, and other potentially influential parties as part of our efforts to spread awareness and achieve better conditions for our community.  This would not be a completely coordinated effort – just a suggestion.  We could develop a letter (or a few sample letters) that interested members could mail out, along with a token they have made or purchased, to these parties.  The target of your mailing and the choice of items would be left up to you, as would any expense involved.  We are not a nonprofit, so we do not have funds to provide for this effort.  It is simply a suggestion/recommendation for those who wish to do something creative and beyond the scope of this group.  We would, however, be more than willing to help create a letter that can be sent and/or help create a contact list which includes target locations/addresses.  We could even choose a different target each week or month and then have all members direct their mailings at this particular target at once in order to maximize our effectiveness.

9. Food for Thought: Ms. RR (name omitted) had a wonderful idea for a variation on a current campaign that is being undertaken by another group/program: The details of this campaign can be found here: http://foodmatters.tv/articles-1/what-the-world-eats-shocking-photos.  We could tailor it to suit our needs by taking pictures of what we consume during a typical week (or day) and then spread it throughout social media.  Target date for this would be in August.  We could hold a public launching event for this here on Facebook as well.  Please let an administrator know if you are interested in being involved and/or helping coordinate this.

10. Social Media Efforts: We would love to see more group members participate in additional social media efforts such as Twitter, Pinterest, Instagram, and Blab.  I tried to host a Twitter training event last year to help those who wished to be involved learn the ropes of Twitter, but I would say it was a COMPLETE failure since, despite my best attempts, only a couple of administrators showed up.  Nevertheless, I would likely be willing to try this again if anyone is interested.  I created a document of the basic steps and information needed to get you started on Twitter, and I can share that with anyone who is interested.  I would dearly LOVE to host a Tweetchat and a Blab session for the Gastroparesis community this year – but it would have to be well-attended or it would be pointless.  Twitter has been an INCREDIBLY EFFECTIVE source for getting information out and spreading awareness.  Please consider joining!

11. State Groups: Lastly, though this is not exactly a project, we would like to address the issue of our state “Fighting for Change” groups.  To date, we have had very few group members join their specific state groups.  We would love for you to join your appropriate state group in addition to this main group. The state groups were created so that you could get to know others in your area a little bit better and have a closer support system. They were also established so that we can better coordinate any projects we might be working on at a local level. Currently, most are pretty small, but we are hoping that with your help and participation, they will grow over time and become very useful and helpful hubs for you. In addition, please feel free to invite family/friends from your state to join the state groups. They do not have to have GP to be members. We welcome any who are willing to learn about our illness and assist in our efforts to spread awareness. We still have some state groups without coordinators (or which need an additional coordinator), so if you are interested in serving as an admin in one of the "empty" groups, please just let me know. We welcome your help! Links to state groups can be found in the "Files" section under "Current List of State Groups & Coordinators.docx." 

WE CANNOT ACCOMPLISH WHAT WE WISH TO ACHIEVE WITHOUT YOUR HELP!!!

PLEASE CONSIDER JOINING ALL OR ANY OF THE ABOVE PROJECTS!!!  We are always available to assist you if you need additional help participating in projects.  In addition, we WELCOME YOU TO SUGGEST ADDITIONAL PROJECTS here in the comments section.  We are ALWAYS seeking input and creative suggestions that can help our cause!

THANK YOU SO MUCH FOR YOUR HELP!!!

Feast Your Eyes on a Gastroparesis Holiday

This holiday season, as you prepare and eagerly await your gatherings and feasts, please remember the gastroparesis community. Far from being a festive season, this can be one of the most challenging times of year for us. The physical and social aspects of dealing with this cruel disease make many wish we could hide from the holidays rather than incite us to join in the celebration. And though we are glad our families and friends can savor the wonderful treats associated with the holidays, we long for a gala where food takes a backstage and sharing each other’s company becomes the star of the event.

Thanksgiving is particularly difficult as it is a holiday that largely centers around the feast itself.  Many in our community cannot eat at all and most are very limited in what they can consume.  Can you imagine observing all the food that appears on television, on billboards, in social media feeds, and in various public arenas at Thanksgiving time and not being able to consume even a few bites of it?  Can you envision watching everyone else seated at the table, enjoying beautifully crafted homemade meals lush with every food you dream about every single day while you sit to the side, unable to taste it?  It is painful – physically and emotionally.  We long to join in your events, but the temptation to eat that which we cannot is sometimes overpowering.  At times, even the smells of the foods at such events keep us away.  Since nausea is a major concern, the aromas filling your houses are often intolerable to us.  And we worry that we will not have unfettered access to your restrooms should they be required. Not a pleasant topic perhaps, but these are the joys of our physical symptoms.

Many of us are unable to participate in holiday events and family get-togethers due to the ever-present physical symptoms of our illness and the sheer fatigue that accompanies it. We are, quite simply, too sick and tired to make it to the party.  Because we are worn down from battling pain and nausea, and because most of us do not consume nearly enough calories to meet our nutritional needs, we often do not have the energy required to dress up, ready ourselves, make the trip, and spend long hours socializing at a holiday event.  We cannot afford to waste precious energy needed for our survival on these lovely but unessential “extras.”

Emotionally and mentally, this brutal disease takes a toll on us at this time of year. We long to be included, but we do not know how to make you see that we cannot celebrate in the same fashion as most of you.  Some of us find ways to cope, perhaps by bringing our own food (or other source of nutrition) to your event, by coming late and/or leaving early, by distracting ourselves with alternate activities while the rest of the party-goers dine, or with the help of another such creative diversion; however, some of us cannot bear the effort and sacrifice this requires and choose not to attend. 

Please try to understand that when we pass up invitations or do not "like" your posts regarding foods and holiday parties, we are not being unkind, and we do not wish to avoid you.  We only want to escape the things that make dealing with our condition more difficult.  Believe it or not, we do not like to see our family and friends uncomfortable.  We are well-aware that we can be an inconvenience and a source of guilt for those who cannot help us and who feel bad for partaking in the dinner while we watch from afar.  We do not wish to see our loved ones enjoy the festivities any less because of our presence.

What we would like, and what you can offer is, first and foremost, sensitivity to our plight.  We miss our old lives and long for things to be the way they were prior to diagnosis.  We struggle greatly to accept that our lives will never return to the “way things used to be,” and we sometimes get lost in those sad moments.  We are capable of happiness at this time of year, but we might forget that for a brief instant, and it sometimes takes great effort on our part to remind ourselves that we can still have joy in our new post-diagnosis lives.  We fight to find substitute sources of delight and focus on what truly matters.   

In addition, you can help us by offering alternatives and minor accommodations.  Perhaps friends and families might be willing to oblige us by allowing us to bring our own foods/nutritional supplements without feeling insulted when we “refuse” to taste your culinary creations.  Or perhaps you might permit us to come at an earlier/later time or stay only a few minutes so that we miss the dinner portion of the event and do not exhaust our limited energy resources.  We do not wish to insult you, and we value your company, but “just a few bites” of an unsafe dish or “just a few more minutes” at the party can leave us in agony for days after the event.  We are sure you would not wish this for us.  And if you are feeling especially sensitive and accommodating, perhaps you might consider holding a completely separate holiday affair which does not include food in any form – a second event just for us.  Or maybe you would like to leave the hustle and bustle of the holiday party world for a brief spell and have a quiet visit with us in the comfort of our own homes.  We know this can be an inconvenience, but we miss you and would love to see you when we are feeling up to it.

We do not expect (nor want) you to give up the traditions and events that you have always enjoyed at this time of year.  We ask only that you understand that we often mourn days past and long to have those times back again.  We hope you will consider finding ways of including us (and our post-diagnosis bodies) in the holidays. After all, it isn’t really about the food.  Isn’t it truly family, friends, and good times spent enjoying each other’s company that make the holidays special? 

Happy Holidays!

What Does "Right Care" Mean to Me?

The Lown Institute is organizing a "Right Care Action Week" (#RCAW) for October 18-24, 2015.  I applaud their efforts and their dedication to "transforming the culture of medicine and building a healthcare system that is affordable, effective, personal, and just." This blog is my attempt to describe what "Right Care" means to me and (hopefully) to the gastroparesis community as a whole.  For additional information regarding RCAW, please visit the Lown Institute website at http://lowninstitute.org/ and view the specifics of RCAW at http://rightcareactionweek.org/.  Won't you join the fight to create a better healthcare system?

******************************************************************************************************************

What does “Right Care” (#RightCare) care mean to me? It means a world in which everyone involved in my life – loved ones, medical professionals, insurance and pharmaceutical companies, policymakers, and even the media – work together to treat me as a person, listen to my concerns, and collaborate with me on my health needs, treatments, and goals. It means a health care system in which all in the Gastroparesis (#Gastroparesis) community are believed and taken seriously, treated with compassion, and respect, and valued as human beings with hopes, dreams, and goals.

It is a world in which we are able to find doctors/specialists who are educated about and understand our condition and who are near enough that we are not forced to travel long distances to see them. It means being able to schedule an appointment when we need to be seen and not having to wait months on end, in pain, before our needs are addressed. It is a world in which doctors stop treating us as hypochondriacs and drug-seekers, and instead, begin to help us understand our options and work with us to find a treatment plan that actually improves our quality of life. It is a world filled with doctors who do not push us out their doors because we are "too complex" and there is "nothing more" they can do. It is an ER where the medical staff does not turn us away, leave us in agony, and offer us no relief, hope, or alternatives when we turn to them in the midst of our fear, crisis, and pain.

Furthermore, it is a system under which the FDA and insurance companies stop denying us necessary treatments that we know from personal experience help us with our symptoms – one where we are free to make our own choices and weigh the risks of such treatment for ourselves. It is a system where pharmaceutical companies search diligently for safe, more effective treatments and cures and do not charge outrageous prices for our life-saving drugs.

It is a world in which government officials, policymakers, and agencies show respect for the seriousness of our illness and the consequences that flow from it. It is one in which research, education, and awareness activities are supported and funded by the powers that be. It is a system under which Gastroparesis is treated as the devastating disability we know it to be.

And finally, "Right Care" is a world which includes loved ones, the general public, and media outlets who attempt to understand, support, and help spread awareness of our disease. “Right Care” includes family and friends who believe we are truly ill and who do their best to accommodate our situation, who understand when we cannot do everything asked of us. It includes members of the general public and media who do their best to see us as we truly are and assist us in getting the help we so desperately need. It is a world where we are not overlooked, taken for granted, mocked, or scorned; rather, we are heard, cared for, and valued by all those who can help us spread our message.

All of these bodies must work together for our well-being.  This is "Right Care!" This is what we fight for!

*****************************************************************************************************************

***************************************************************************************************************** 

I ask you to please read the following blog and watch the video. (And, if you are willing, please share them.) I have tried to portray our situation honestly and completely and to convey our needs. This is my best attempt to help all those involved in the health care system to understand our daily struggle with gastroparesis. It is my plea to get us the help we need, to be heard by the people who have so much influence over us and who could make such a great difference in our lives. Thank you!

Video: https://youtu.be/qPYVfefaB1g 

Article: http://melissarvh.blogspot.com/2015/05/starving-for-help.html

Invisible Fight

I have tried for weeks to write an article about invisible illness, about my invisible fight.  You see, this week, September 27 to October 3, is “Invisible Illness Awareness Week,” and I want to contribute in some meaningful way; yet, I continue to struggle with the concept.  Oh, I know the definition of “invisible illness” – a condition that significantly impacts the diagnosed individual but that is not obvious to others – but this is an incomplete and somewhat inaccurate description.  My invisible illness, gastroparesis, is indeed indiscernible to some… but not to all.

First and foremost, it is readily apparent to me.  I wake up every morning facing a day of pain and fatigue.  Because my stomach is paralyzed, I cannot eat.  To do so causes me immense pain.  So, my days are spent trying to avoid food while still somehow managing to meet my nutritional needs.  I am malnourished and exhausted much of the time.  I look in the mirror, and I am met by a skeleton.  I do not recognize the person who stares blankly back at me, this stranger who lacks my (former) vibrancy.  I have a clear view of my illness, every single moment of every single day.

My illness is evident to most of my family and friends as well.  They see my shrinking frame, and they are well aware of my new limitations.  They are not blind to or untouched by my illness.  They notice that on the few occasions I am out, I cannot participate in meals, and I lack the energy to join in many of the festivities.  It is often plain to them that I am fighting pain and nausea.  Many times, they can detect that my smile is not quite real, that my eyes aren’t shining quite as brightly as before.  This is especially true for my immediate family.  My husband and young daughter do not think my illness (or at least the effects of it) to be invisible when they are forced to take on extra household tasks and run errands that I can no longer complete.  They “see” my absence quite clearly during my daughter’s events and performances, the times when my husband must act as both father and mother to my daughter.

No, my illness is not “invisible” to me or to those close to me.

Why, then, is it invisible to the others?  Why do many doctors look past my condition as if it weren’t staring them in the face?  How can the general public pass by me on the street without so much as a second glance?  Why do the insurance and pharmaceutical companies, the policy-makers, and the media find it so easy to look past me and deny my existence?  Why is my plight and the plight of so many others like me dismissed so easily?  Where is the empathy, the compassion, and the willingness to help the invisible ones?  When I ask myself these questions, I come to believe that perhaps my illness is invisible after all – and this deeply saddens me. 

But I am not without hope.  These people – the “others” – might not be willing to open their eyes to me, to my illness, but perhaps they will open their ears and hear me.  If I am loud enough, persistent enough, and I refuse to go unnoticed, maybe I can one day make myself and my fellow strugglers known to them.  Yes, this is my “Invisible Fight” – to make the unseeable, seeable. 

Here is my plea: 

Behind the Scenes at the Mr. Rob Thomas Concert

I absolutely loved the Mr. Rob Thomas concert in Indy this past Tuesday evening.  I counted down to it on my Facebook wall and in my Twitter feed for 67 days.  It was one of the most exciting events I have ever attended, and I describe it to my friends as "perfect."  I am, if you can't tell by now, a HUGE Mr. Rob Thomas and MB20 fan.  Always have been.  The first concert I ever attended in my life was a Matchbox 20 concert in Fort Wayne a couple of years ago, at the age of 46!  I got to meet the band and had pictures taken with all of them.  Beyond exciting!  So, needless to say, I was highly motivated to attend this concert and looked forward to it from the day I heard about it.  Couldn't wait to show off my pictures after it was over.  Almost everyone has seen them by now.  But what they haven't seen, and what I haven't let them see, is what it took for me to get to that concert -- and the consequences for someone like me, living with gastroparesis or maybe another chronic illness, of undertaking an outing such as this.  They aren't privy to what happened "behind the scenes" of the concert.

It started the day I heard Mr. Thomas would be touring -- the worry, the fear, and the hope that despite the effects of my illness I might be able to attend.  You see, because of my gastroparesis, I cannot eat, and this causes all sorts of issues that most other people never have to experience.  Every time I consider going to an event, I fear that I will be too sick to actually attend.  I don't like dealing with that disappointment, but what I like even less is disillusioning the friends with whom I have looked forward to enjoying the evening.  I have let them down so many times already that I am surprised they agree to include me in anything.  But I have good friends, friends who understand and are sympathetic to my plight.  They tolerate my shortcomings.

When I am 67 days away from the concert, I can pretty successfully ignore my worries and fears, but as the days fly by, it becomes more difficult.  I know that during the week or two before the concert, I will have to eat less.  If there is any chance of making it there, I must eat as little as possible so that the likelihood of nausea and pain on the actual concert day will be lessened.  Food equals pain and nausea, and that equals missed events.  So, I limit my already meager intake of sustenance even further.  By concert week, I am pretty run down.

The night before the concert, I eat and drink practically nothing, and on concert day, I eat nothing at all, not a single bite, and drink only what is necessary to keep me from being dehydrated -- can't chance missing Mr. Thomas and disappointing my friends.  I am drained from days of food deprivation, and this day is almost unbearable.  I find I am shaky, dizzy, and weak.  Every time I walk into the kitchen and see the food, I long to take just a bite.  I make my family lunch, and I can smell the food.  I want so badly to sit down with them and eat just a little.  If I do, though, I will be in agony.  I will get nauseous, be in excruciating pain, and likely bloat up to the size of a 9-month pregnant woman.  I am miserable, but I am determined.  I hardly ever go out, and I know I won't get this chance again anytime soon.  I suck it up and move on.

I pick out an outfit and start getting ready to go.  As I comb my hair (which continues to thin due to malnutrition), I take a good look in the mirror.  I think I am hideous.  I look like a skeleton.  I barely recognize the person staring back at me, and I hate what I have become.  I can comb her hair, put a nice outfit and makeup on her, but I cannot make her what she was a year ago.  I cannot change this.  It saddens me, but I do the best I can and try to convince myself that I won't scare small children with my appearance.

My husband and I decide to arrive at the venue a little early because I really would like to get a picture with Mr. Thomas.  There is a slim chance of this, but I am willing to give it a go.  It is scorching outside, and this adds to my misery.  Hot, weak, and shaky -- not a good combination.  My husband helps steady me.  The security guards at the venue are incredibly friendly and helpful (really!).  They point to a spot where I can wait for Mr. Thomas, and I stand there for a bit until he finally arrives.  (Yep, I got sunburn, too!)  He is such a gentleman, so friendly, and he lets us take a picture.  Yay!  Success!  Despite my hunger and weakness, the day is wonderful so far! We meet up with our friends and prepare for the concert.

As I stand outside the closed doors to the auditorium, my legs shake with weakness.  My husband holds onto me and reassures me that we will be able to sit soon and that I WILL make it.  I can smell popcorn in the lobby, and I long to have some.  I love popcorn, but I haven't been able to eat it (not even a bite) in more than a year.  People pass by enjoying this delicious, buttery treat, but I can only watch -- and savor the smells.  I am thankful when the doors finally open so that I can focus on something else.  We have front-row center seats this evening, and I will be able to concentrate on only what is in front of me -- the stage and the band!  No crowd-watching from this point on, and I am glad.

I concentrate on appearing as and behaving like a "normal" person.  I do not want anyone to know I am sick.  I don't want my friends to worry.  I don't want to take away from their enjoyment of the evening.  I don't want to cause a scene.  I silently pray that I will not vomit or faint or reveal in any way that I believe I am at the end of my rope here.  I smile, laugh, and joke as if nothing at all is wrong.  I am happy, and I want it to be that way, so I pretend, and sheer will-power gets me through.

I enjoy the opening acts (Vinyl Station, which is a fantastic group, and the Plain White Ts), but I am actually thankful when their portion of the show ends because I am wearing down quickly, and I want to see Mr. Thomas perform.  When Mr. Thomas takes the stage, I disregard all the difficulties it took to get here.  I ignore my weak, shaky legs, which I can no longer really feel and which can barely hold me at this point.  I grab onto the stage floor in front of me and I thoroughly enjoy the next 2 hours.  (I had to sit a couple of times, but, for the most part, I made it!)  For just a brief spell, I forget all the agony and worries in my life.  I delight in the time I have with my friends and spouse.  I relax and let go of my pain for a bit.  I know I will pay for this later, but at this moment, I do not care.  It has been months since I have been out for anything other than a medical appointment or mundane errand, and I am having fun -- fun -- not something we experience in our house very frequently anymore.  I am ecstatic.

All too soon, and yet way too late, the concert ends.  As I make my way back to the car, leaning heavily on my husband to steady myself, I begin to think about the consequences of this evening out.  Tomorrow I will pay for this dearly.  I spent weeks preparing for this and many days depriving myself of even the basics, knowing that when this was all over, I would be in worse shape because of it.  I know that tonight I will collapse, and tomorrow I will have to begin to try to erase the ill effects of this evening and the rough days leading up to it.  I will eat what little I can tomorrow, and it will be harder than usual to tolerate it.  I will begin to try to make up for the calories I have lost, but I know I will never be able to.  It doesn't work like that.  I will suffer from exhaustion and pain from pushing myself considerably beyond my limits.  But most of all, I will face the mental anguish of knowing that my life must return to this "new normal" -- to this place where I am homebound, where I must spend every day trying to balance my physical need for food against the pain it causes me, where I must deny myself the basic needs everyone else takes for granted because I cannot live with the agony it causes me when I partake, and where I spend all my days online advocating for others who must live with this disease.

But tonight?  Tonight I am "Overjoyed."  :)

*********************************************************************************

All of us before the concert

My best friends and I

My husband and I

Mr. Thomas - from the front row!

Yep, I got my picture!

Front row with my sister & best friend

I am happy!

Me with Mr. Thomas 2 years ago

Top 10 Reasons I Know I am in a Hospital and Not a Hotel

Well, I am angry, and when I am angry I should never write.  I know this, but I cannot help myself.  I just read an article about who best understands patient satisfaction – doctors and nurses or hospital administrators (http://www.kevinmd.com/blog/2015/05/doctors-and-nurses-vs-administrators-on-patient-satisfaction-whos-right.html). (My answer is “neither,” but that is a topic for another day.)  Anyway, the point of the article was largely lost on me when one nurse commented, “A hospital isn’t a hotel; patients shouldn’t expect to be pampered.”  Wow!  We patients are, of course, all demanding, spoiled children who come to the hospital only when we need a break from the hardships of everyday life and are looking for a place we can slack off and get some rest, while having a dedicated staff attend to our every whim.  Who would dream of going to such a facility when truly ill?  So, here is my response…

Top 10 Reasons I Know I am in a Hospital and Not a Hotel

10.    I hear beeps, intercom messages, and “code” announcements every 10 seconds.

9.     Five different nurses just tried 5 times each to start an IV in my already sore arm.

8.     I am confined to my assigned floor and can only walk a small square of hallways while

        pulling my IV pole alongside me.

7.     I am drinking Protein Ensure rather than eating a 5-star meal.

6.     Instead of a sun hat, I have a “hat” which measures my urine output every time I use the   

        restroom.

5.     My clothing has no back side.

4.     “Room service” personnel do not come quickly when I call, and when they do arrive, they

         do not seem to understand the basic rules of customer satisfaction.

3.     An aide turned on the overhead and bed lights without warning at 3:00 AM so that she could 

        take my blood pressure for about the hundredth time today – and then told me I should

        really get some sleep.

2.     Someone just stuck a rather unpleasant tube down my nose to pump my stomach.  

1.     I am paying far more for my stay here than I would in even the finest hotel.

Just a Patient Trying to Understand

I have thought a lot about patient engagement over the last year.  It is something I never really considered prior to being diagnosed with gastroparesis – never really had to.  It is a priority topic now, though.  Patient engagement largely refers to patients being involved with their own healthcare.  It includes becoming informed about your condition, actively pursuing medical care and interacting with medical professionals involved in such care, and doing all you can to prevent and control your illness.  You will often see it listed side-by-side with the term “shared decision-making.”  This means that a patient works in conjunction with his doctor and other healthcare professionals to determine what the best approach is to treating his illness. And while it is all well and good to discuss your own role as a patient in this strictly medical side of the patient engagement equation, I believe we are remiss if we fail to consider another important factor in this equation: policy issues and the effect of governmental and regulatory bodies on your ability to engage in your own healthcare.  Let me be blunter: How is a patient supposed to “engage” in his own health care if he cannot even understand or be included in the processes which ultimately affect the choices available to him?

In my view, patient engagement (and patient inclusion) should refer to more than simply having conversations with doctors and attending medical conferences.  It must also include engagement in the process and policy development that ultimately affect your health and your ability to treat your condition as you see fit.  It must include having a “place at the table” during governmental and regulatory body meetings, conferences, and discussions.  But more than that, it must include being able to understand that process before ever being engaged in it – and here is where it gets tricky.  What newcomer can possibly understand all the factors that affect healthcare?  Don’t these bodies have an obligation to make the process both understandable and accessible to the general patient population?

I will offer two examples of the uphill battle for information that we in the gastroparesis community face.  The first involves a medication called “Domperidone” which many take, but which is currently not approved by the FDA.  I was told about this drug when I was first hospitalized and diagnosed.  I was informed by the doctor at the hospital that this drug was not FDA-approved for everyone, that I had to get it from Canada, and that it came with serious heart risks.  I refused this drug at first, but as my symptoms became truly life-threatening, I changed my mind.  I called my doctor and asked to be put on this medication.  Not that simple!  He informed me that I needed an EKG to make certain I did not have pre-existing heart issues that might prevent me from taking it.  He also informed me that since the drug was not FDA-approved except under certain conditions, he would need a little time to complete information with the FDA so that I could have a prescription.  He also told me that I could expect it to take anywhere from two to six weeks for the medication to take effect.  I assumed I would have to order the drug from Canada, as I was told in the hospital (which would mean further delays), but my doctor told me it could only be obtained in the US – from one pharmacy in Texas.  After a couple of weeks, I was finally able to get my Domperidone, and fortunately for me, it began to take effect within the first couple of days.  It has kept me alive; there is no doubt in my mind about this.  Now, this doesn’t seem all that traumatic until we fast forward a few months later to a situation I encountered in my GP support groups.

I began to read posts about people who had been getting prescriptions of Domperidone filled but were suddenly being cut off, with no warning and with no advice as to how to obtain it.  It seems that they were getting their medication from non-FDA approved pharmacies, but since some sort of new FDA crackdown had begun, these pharmacies were now being fined and forced to stop distributing it.  Another segment of people in the group had been going to a pharmacy overseas to obtain their Domperidone – without a prescription – and were suddenly running into issues with this as well.  Misinformation was running rampant.  Some began posting that the FDA had suddenly banned Domperidone and that no one would ever be able to get it again.  All were begging for help and information regarding if and how they could legally obtain their Domperidone.  This was a very serious situation, as many of us believe our lives literally depend on continuing with our Domperidone.

I had already done some research on the Domperidone situation.  I had previously consulted the FDA website and learned all I could about how and why it was restricted.  I had learned that it could only be obtained as part of the Investigational New Drug (IND) program, that doctors were required to complete a packet to be able to prescribe it, and that only patients who had “failed standard therapies” and suffered from one of a list of conditions found on the FDA site could qualify to take it.  I challenge anyone to read and make sense of this section on the FDA site (http://www.fda.gov/Drugs/DevelopmentApprovalProcess/HowDrugsareDevelopedandApproved/ApprovalApplications/InvestigationalNewDrugINDApplication/ucm368736.htm).  I suppose it could be more confusing, in theory, but I do not know how.  God help the person who does not have a Ph.D. and/or a medical background in trying to decipher this!  In any case, I could find nothing about which pharmacies were allowed to distribute Domperidone.  I recalled the doctor in the hospital saying there were pharmacies in Canada that could do this, but my personal GI had said only the pharmacy in Texas could do this. 

Wishing to help clear up the matter, and to assure my groups that Domperidone had not been banned entirely, I called the FDA – not just once, but four separate times.  I was given four different answers each time I called.  My first challenge was to reach a real individual with whom to speak.  I had to go through a series of options during the phone call, and each time I chose the wrong one, I failed to reach a human being and had to start over.  I finally managed to select the correct sequence of choices that allowed me to reach an actual person, and I was told that there were three pharmacies that could distribute Domperidone, one in the US, one in Canada, and one in the UK.  The FDA representative could not reveal the names to me; I would have to get those from my doctor.  (Apparently this is top-secret information!) 

Some people in the groups questioned this information when I reported it, so I called the FDA a second time.  This time I was told by the FDA that they could not give me an actual number or list of pharmacies allowed to distribute Domperidone, but that this information was in my doctor’s IND packet, and he could provide me with it.  I continued to receive new questions and challenges in the groups, so I called a third time.  This time, I was told the same thing I was told in the first call – three pharmacies, one in Texas, one in the UK, and one in Canada.  Again, the representative said she could not give me the names. 

I took the information back to my groups feeling pretty confident that there were indeed three pharmacies where we could obtain our Domperidone.  I was hoping the matter would be closed at this point and that people would contact their doctors for more information.  People did call their doctors, but they began complaining that their doctors were telling them that they had no idea which pharmacies were FDA-approved to distribute Domperidone.  Their doctors, as it turns out, in almost every case, had been writing prescriptions to non-approved pharmacies, and these pharmacies had been filling them without hesitation.  So, I placed a fourth phone call to the FDA with the intention of demanding pharmacy names.  Guess what?  The fourth representative I spoke with told me that contrary to what I had been told the first three times I had called, there was only ONE pharmacy from which we could obtain our Domperidone and that was the one in Texas.  She told me that the Texas pharmacy could obtain it from Canada or the UK, but that we, as patients, had to get it from the pharmacy in Texas. 

Can anyone honestly say for sure what I should do at this point?  What should I tell my groups?  The last representative with whom I spoke assured me that she indeed was the one giving me the correct information, but she seemed unconcerned that I had received “false” information from the previous three representatives.  She also seemed less than upset that I could not get this basic information, in any kind of understandable format, from the FDA website.  It did not bother her that I was walking away without yet having the name of the pharmacy we were “allowed” to use.  She did not take any interest in my stories about people being suddenly turned away from sources where they had previously been able to purchase their life-saving Domperidone with no indication as to where they should now turn.  She did not seem disturbed by the fact that doctors and pharmacies, in large part, do not know the rules regarding Domperidone prescriptions and sales.  It did not bother her that I objected to being offered only one choice of pharmacies, and she told me plainly, “It shouldn’t be an issue.  You won’t pay significantly more.”  Excuse me?  Do we actually believe in the market system here?  And please don’t tell me what “shouldn’t” be an issue for me!

The FDA could easily clear up this whole situation.  They could, of course, approve Domperidone.  Short of that, they could post a clear and easily understandable explanation on their website as to how and where to obtain Domperidone.  Why do they refuse to do this?  How can I participate in my own healthcare when I cannot easily obtain basic information?  I am not a healthy person.  The people in my groups are not healthy people.  We struggle to get through the day under normal circumstances.  How can we spend hours of our time facing these sorts of obstacles?  And in the end, after all my efforts, I still cannot be certain if I have accurate information regarding a situation I have tried to resolve FOUR different times!  Surely I am trying to be an engaged patient.  Am I not?

(To the FDA’s credit, I will say that gastroparesis was included for the first time in the FDA Functional Gastrointestinal Disorders Patient-Focused Drug Development Public Meeting on May 11, 2015.  We were represented by a few panelists who suffer from this diagnosis and we have been allowed to make public comments via the docket.  This is a good start.)

This is but one example of the difficulties we face.  Please allow me to give you another.  Many people in my groups wish to get gastroparesis listed as a disability in and of itself in the SSA’s “Blue Book” so that they are not forced to qualify for SSDI under provisions of a separate condition or based on equivalent severity of symptoms.  (Please forgive me if I do not speak as clearly as I would like about this situation, as I do not yet fully understand the complete workings of this whole disability system.)  In an attempt to ascertain how we might influence the policymakers and fate-determiners in our favor, some members of our advocacy group have been researching websites and writing to various policymakers and organizations in an effort to discover who really has control over which conditions make it onto this disability list.  After months of contacting governmental, medical, and advocacy sources, we still have little idea where we need to direct our “lobbying” efforts. 

We first targeted Congress and the SSA.  We were told by each that they were not really the group we should be contacting.  We were told at one point to contact state level Disability Determination Services agencies.  We were then told by a particular congressman that we should be contacting the Institute of Medicine (IOM).  None of us had ever heard of the IOM.  Nevertheless, we started looking into this information, and we found that this might indeed be a helpful path.  We took note of their next “open” meeting and tried to get involved.  We were informed that we could not comment at their upcoming meeting and that we could not view it via webcast.  We did have the option of calling in or attending in person (with security clearance), but since most of us cannot travel due to our illness, and since the meeting was an all-day event, these were not very viable options. 

So, at this point, I would simply like to know how we are to be heard and participate in this process.  How is it that an advisory committee can determine our fate without ever even hearing from us?  Yes, I understand that they seek input from physicians and that they research the current literature and studies regarding our disease, but they also need to consult us.  They need to get a clear picture of what we endure on a daily basis!  I have read on their site that they are tasked with holding public outreach meetings where we may speak, but I cannot find the details regarding how this process works or when it will come about.  Why should it be this difficult to determine the course we must take to be an influencing factor in the processes that affect our own lives?  Why can we not find a straightforward path to participating in our own care?  Why can this not happen?  I believe it easily could if only the parties involved were willing to be upfront with information and truly sought to include us.  Where is the outreach?  

These are but two examples of the struggle we face in trying to be heard and considered in matters that directly affect us.  I could give endless additional illustrations.  There are boards and agencies, bills and regulations, policies and rules, and on and on and on – all affecting our very lives!  Barriers, obstacles, and mazes of information abound!  We are told to take an interest in our own healthcare, to participate and be proactive, and though that is possible to an extent, it is far more difficult in some areas than it should be.  I am simply an inexperienced patient who, until a year ago, had never dealt with anything healthcare-related.  And now I am trying to navigate some pretty harsh waters under less than ideal circumstances.  We in the gastroparesis community are all very sick people who have little knowledge of processes and policies and who have little energy to fight; yet, we show up every day and continue to battle.  We believe in patient engagement at all levels – including policy level.  Could we get a little help, please?