Friday, February 26, 2016

Shadows of My Former Life















Shadows of my former life,
Where I sometimes long to be,
Remnants of another world,
Slowly fading from my memory,

Live in the darkness,
Not wanting to be seen,
Days gone by, ancient times,
Hidden, snatched away, stolen silently.

A passing dream – or was it real?
Seems so distant, far away.
Is this my life?  Am I the same?
No, forever changed, a different day.

Tattered, torn,
Broken open to the core,
Stripped bare, tossed aside,
How can I possibly endure more?

Misery, yearning,
A longing to be free,
Struggle, heartache,
Feel it overtaking me.

A whirlpool, raging,
Swirling all around,
Engulfs, swallows,
Forces me down.

Sinking, drowning,
In the dark, black sea of despair,
Battling, thrashing,
Gasping for air.

Hope, light,
All blocked from my view,
Striving, seeking,
Aching to be renewed.

Frightened, weeping,
Fighting back a scream,
Then a flicker, a glimmer, a notion,
Things are not what they seem.

Deep in the abyss,
A faint light beckons me.
I call out, cry for mercy,
Is this what’s meant to be?

Pleading, beseeching,
My life is in Your hands.
Shadow, light,
It is all within Your plans.

Compassion, forgiveness,
And the waves begin to rest,
Tranquil, serene,
No anger in the crests.

My heart tears open,
My outstretched arms summon You.
Peace, comfort,
My soul content to start anew.

You calm my fears,
And ease my soul,
Supply a path, direction,
When I am sure I can bear no more.

You offer hope,
Where I see none,
And You reminded me,
That we are not yet done.


Saturday, February 13, 2016

True Love... and Chronic Illness

This Valentine’s Day, I am feeling sentimental, and I find my thoughts turning to notions of what it means to truly love someone.  It occurs to me that many people doubt their relationships because they have not been showered with bouquets of flowers, boxes of candy, and expensive gifts.  They fret because they have not been invited out to a pricey restaurant or been summoned to some lavish gala.  They lament the fact that they have not received that one special romantic card that sums up their unfathomable love in a few poetic sentences. 
But while all of these (missing) tokens of affection are splendid and can make a person feel quite special, it seems to me that love might be a little something different than all of this – something more.  Perhaps love is not about the hearts, candy, flowers, gifts, and festivities surrounding a certain day of the year.  Perhaps, instead, it is this…

·         It is my friends who call, play online games with me (like my sisters and cousin who play Scrabble with me, even though they know they will never win – and yes, that is a joke), comment on my posts, share coffee memes, write notes for no particular reason, and tell me every day that I matter and that the things I do make a difference in their lives and the lives of others. 

·         It is my neighbors who cook dinner and make treats for my family because I am too sick and too tired to provide this.  It is my neighbor who plants flowers for me and fails to take credit for this or even so much as mention it.  It is that same neighbor who delivers homemade hard candies for Christmas because she knows they are one of the few treats I can still enjoy without pain.  It is my neighbor who takes my child swimming because I can no longer get her to the pool.

·         It is my father and stepmother who stay away and do not come to visit, even though they want to see me, because I find it too difficult to entertain visitors these days.  It is their efforts to support me from afar in the ways I ask rather than in the ways they think support should be offered.  It is the sacrifice they make financially to help me with my ever-mounting medical bills.  It is their willingness to travel to see their grandchild because I cannot bring her to them.  It is the message my dad leaves on my answering machine: “I know you don’t feel like talking, but I wanted you to know that I love you, and I am praying for you.  I pray for you all the time.” 

·         It is my sister-in-law who picks up my child from school on the days my husband cannot, because she knows it will be a significant burden on me to get to the school in the late afternoon when I am generally feeling my worst.  It is that same sister-in-law who stays for my child’s birthday party when I cannot attend and helps serve the children there, monitor their activities, and clean up afterward.  It is her thoughtfulness when she takes picture and videos at such events so that I can see what I would otherwise have missed.

·         It is my sister and brother-in-law who sit out in the rain at a concert in which they have little interest so that I can enjoy a very rare evening out.  It is that same couple who travel over an hour, pick me up to take me to that concert because I cannot safely drive, and who then try to refrain from eating dinner in front of me because they do not want to hurt me by consuming foods that I can longer have.  It is their attempts to make every moment I am out feel like the best moment in the world, to treat me as if I am the center of attention and the most significant person in the room.  It is their focus on meeting my needs, making me comfortable, and pushing aside their own desires to accommodate my wishes.  It is their willingness to spend far too much money, money they could have used for events of their own choosing, on overpriced tickets – and their willingness to then leave that high-priced concert at the drop of a hat, without even a moment’s hesitation, should I start to feel bad.  It is my best friend offering up his motorcycle so that I can arrive “in style” at that concert.

·         It is my 12-year-old daughter who sacrifices so much and rarely complains, though I know it must break her heart to give up the many “little things” other children take for granted.  It is her graceful and compassionate response when she hears that I will miss yet another choir performance, play, Tae Kwon Do tournament, or birthday party: “It’s okay, Mommy.  You can’t help it if you are sick.”  It is hearing her exuberantly tell her aunt, “Today was such a good day!  Mommy took me shopping and we were able to stay out a whole two hours!”  It is feeling her little hand caressing my back and hearing her soothing voice tell me she hopes this is a good day for me. It is this child holding her tongue when I am screaming at her for no reason at all other than my pain getting the best of me.  It is this beautiful, precious little being patiently explaining to teachers, friends, and everyone else who will listen that her mother has gastroparesis and this means that her mother cannot eat normally or do the things that many parents do.  It is my child participating in every “Go Green” event and campaign we hold – and doing so with enthusiasm.  It is hearing her pray for healing and comfort for me and for all of those in my GP community every single night without fail.  It is her holding me in high esteem despite my many shortcomings.

·         It is my husband who has not left me despite the truly horrendous trials I have put him through.  It is him rising every day, performing the household chores that I can no longer complete, taking care of our child’s many needs, acting as chauffeur, maid, butler and general caretaker.  It is him shopping at an ungodly number of stores, trying to find that one perfect, organic, gluten-free, non-GMO food that I am just sure I will be able to eat this time, and then watching silently when I throw it across the room in frustration.  It is him tolerating the days when I decide that “I am not going to eat or drink another thing because it only prolongs my agony,” and knowing that I do not really mean this.  It is him telling me that I am beautiful, though anyone can clearly see the truth in the dark circles under my eyes and in the skeletal reflection in my mirror.  It is his willingness to listen to endless rants about incompetent doctors, the “evil” politicians and media members who will not help us, the lack of research and treatments, and the details of the many projects I want to undertake for my GP community.  It is him patiently enduring my screaming fits of anger and apologizing even when he has done nothing wrong.  It is him holding onto me when I am crying and on the verge of throwing in the towel, despite the fact that I have likely just scolded him, pushed him away, and blamed him for every horrible thing that has ever happened to me.  It is him understanding that pain and lack of nutrition make me crazy and irrational.  It is him believing that I love him even when I tell him that I despise the world and everything in it – including him.  It is him accompanying me to every doctor’s appointment so that they might take my illness (and my description of its effects) seriously.  It is him rubbing my shoulders and feet at the end of a long day’s work, despite his own fatigue, so that I can relax and sleep well.  It is him whispering to our child in the other room, “You have to try to understand and forgive Mommy.  She’s just tired and sick.  She doesn’t mean it.”  It is him praying with our child for my healing, strength, and peace.  It is his never-wavering confidence that we can continue to get up every morning and do what is necessary to get through the day.

There may have been a time when I placed great value on a day – on the gifts I received on that day – but that time has long since passed.  Love is not based on seemingly romantic gestures, gifts, and evenings out.  It is the day to day thoughtfulness one displays and the commitment to enduring anything life throws your way.  It is standing by each other, offering support and comfort in difficult times, and placing the wants and needs of your loved one before your own.  I am eternally grateful for the love I am shown by those around me on a daily basis.  This Valentine’s Day, I want you all to know how much I love you, too.

Tuesday, February 9, 2016

My Deceitful Lover


February 14, Valentine’s Day, the day for lovers, marks my second anniversary with gastroparesis.  But this has been no great love affair, and there will be no celebration of fond emotions.  Gastroparesis is a jealous and demanding paramour.  It aspires to rule my life and desires my complete time, attention, and devotion.  It relentlessly pursues me and seeks to control my every thought, emotion, and action.  It wants to own me, and it cares nothing for my wants, needs, plans, dreams, and goals.  It is heartless, merciless, and cold.  It knows nothing but pain and misery, and it will overtake me in an instance if I allow it.

I did not always know this about my constant companion.  It can be deceptive.  At times, it whispers to me, and I scarcely know it is there.  I convince myself for a moment that it might release me – and I believe its lies when it says we can coexist in peace.  But it tricks me.  It offers only short reprieves from the hunger and pain.  It taunts me with the promise of a normal life only to snatch it away when I least expect it.  It keeps me guessing, off guard, unsure of myself and my abilities.  It laughs at my plans and mocks me when I speak of my dreams of a beautiful, serene future.

It imprisons me in my own home and separates me from the ones I truly love.  I do my best to appease it, to do its bidding.  I obey its harsh demands.  But it is never enough to soothe the beast.  It will not let go of its death grip, and it refuses to let me be.  It tells me no one else could ever love me, that I am not worthy of others in my weakened and humbled state.  It hints that, indeed, my former loves have already left me.  “Are they here with you?” it mocks.  “Do they still seek your company?”  And I must pause – and contemplate.   

It hurls insults about my appearance and reminds me that I am grotesque, persuades me that I belong in the shadows.  And then, in a soft voice, it beckons me to those shadows.  It welcomes me to remain in its world, where there is no judgment and no expectation of greatness.  It caresses me with its offer of acceptance.  It beseeches me to look no further and admonishes me to spurn all other suitors.  It embraces me, and for brief moments, I want to remain.  I want to cease the fight within my soul and give in to the dark promises it offers.  It tempts me.

But deep in my heart, in my barest soul, I know the illusive nature of this monster that resides with me, in me.  In truth, it endeavors only to harm, isolate, create doubt, fear, and hopelessness.  It seeks to devour me – heart, mind, body, and soul.  It hides its true nature and disguises its malevolent intentions.  And if I allow it, it will crush me, break my spirit, and enslave me forever.  Gastroparesis, and the world it offers me, is not my true and intended lover, not my future, not my destiny.  I share with it this anniversary, but it is not my eternal fate.  I am physically bound to the beast, but it cannot possess me without my consent.  Something better awaits, and I must never forget that my truest passion, my genuine love still calls for me, longs for me. 




Saturday, February 6, 2016

Hope


Hope

I taunt myself sometimes,
With the hope that I could have a normal life.
Dress up, go out, converse, fake a smile,
Shatters, crumbles around me, no longer meant to be.

In the deepest recesses of my haunted mind,
There's a dream, a longing, that is still alive.
But it is much fainter, much paler, than in days before,
Will it continue to dim, til it is no more?

Surely something better waits for me,
The object of my yearning, that's alive in my dream.
At times, I reach to grasp it, often timidly,
Beyond my boundaries, but perhaps soon won't be.


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I live with a chronic illness called "Gastroparesis." It is basically paralysis of the stomach, and it means that I cannot eat normally. Many in my community can no longer eat at all. "GP" is a digestive/motility disorder in which the stomach muscles, controlled by the Vagus nerve, fail to contract and move food from the stomach into the intestines at the proper rate.  Under normal conditions, the stomach stores food only long enough for it to be ground down into small pieces by contracting stomach muscles.  This food is then emptied into the small intestine and passes through the digestive system.  

This process is slowed in those afflicted with gastroparesis, resulting in food being “stored” in the stomach for an abnormally long period of time.  This slowing of the stomach emptying process can cause those afflicted to experience debilitating stomach/abdominal pain, bloating, nausea, vomiting, heartburn/GERD, and early satiety and can lead to serious complications such as malnourishment, dehydration, extreme weight loss, esophageal damage, bezoars, and overwhelming fatigue.  


Gastroparesis can result in severe malnutrition, weight loss, extreme stomach and abdominal pain, and a whole host of other symptoms. It can be a difficult illness to manage. There is no cure, and there are very few reliable, effective treatments.  The treatments that are available to us come with serious risks and side effects and are often not covered by insurance.

We fight to survive, to keep hope alive, and to have some semblance of a "normal" life. This is the only poem I have ever written, so please forgive me if it is a bit "rough around the edges."

Monday, February 1, 2016

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!*

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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!!!