Misinformation in the Gastroparesis Community: Closing the Rift and Stopping the Fear

There has been so fighting in the Gastroparesis(GP) Community. I have been bullied myself since April - and maybe a bit before that. I want to say that support groups are not something to make a power play on. If you are looking for fame and glory, support groups are not the way to go. I know I've posted basically touched on the same thing in another blog article already, but wanted to repost it.

Seven to eight years ago, there was hardly anything online about the GP Community, so a handful of us made groups and pages. We wanted to spread more awareness. And, I have had my blog since 2008. We wanted to make a safe place for GPers to vent, learn about their illness, stay positive, and help the newly diagnosed.

I have no idea what's been going on lately, but there is SO much negativity in the GP Community. People are scared to post in groups for fear of backlash. People are being bullied based on their opinions and beliefs. People are talked down to or ignored. This is NOT what the Community is about. It's embarrassing because other Communities, like the cancer community, has noticed there's something not quite with our own Community right now. That is just so devastating.

Our Community that we worked so hard to build up is a laughing stock to other support groups in other areas.

We need to do better. We need to treat each other with respect. You don't have to like someone, but you can respect them. People are sick enough without this mess. Not only that, but the bullying needs to end. People should not be scared to post, voice their opinions for fear of being shut down and banned, or being ganged up by a group of people. How can people learn about their illness or ask important questions if they are too scared to post? That is NOT what I envisioned when I helped start this Community.

No one should be living in fear. I've been having panic attacks while logging into Facebook, because I honestly don't know how I'll be attacked today. I am really stressed out and anxious, which is effecting my health in a horrible way. I have been too sick to do much of anything. The attacks from people will tell me it is in my head, in addition to blaming me for the divide in the Community. It seems like it should not bother me, but when you are constantly beaten down daily, it really starts messing with your psyche. I block them, but it still hurts. My feelings are so hurt and my heart is broken. I have been crying because I am so sick at this moment, but isn't that always the way? People kicking you when you're down?

There is a giant rift in the GP Community. It has been blamed on me several times. I have NOTHING to do with that and it breaks my heart that this is happening. I would never in a million years try to dismantle a Community so important, especially since I helped build it up from scratch. We need to heal as a community and get back to where we were. We need to knock off the negativity and get back to the original idea that some people have lost sight of: GP Awareness.

All of these posts about selling things, let's say vitamin shake mix as an example to make money. People seem to be losing sight of the main message - to promote and educate about gastroparesis, because the more awareness will lead to research and hopefully a cure. It just seems like the GP Community is losing sight of that message too.

We should be helping to guide the newly diagnosed who are terrified. There is SO much misinformation out there about Gastroparesis, that one person approached me and told me she was going to die because GP is a death sentence. She really was frightened because she read on the Internet that GP = instant death. I comforted her the best I could, and I hope it helped. So, now you have to be careful when you look at things about GP and question them. That annoys me too, that there is A LOT of misinformation out there.

My dream is to see all of the Gastroparesis groups work together, since we should have a common goal, but I do not see that happening. Some of the group owners have their own agendas. That saddens me but it's up to them. I just know that I'm trying my best, here.

Image taken from: http://www.unityofdelraybeach.org/images/unity-hands1.jpg



The abuse and bulling needs to stop. PERIOD! I know I'm not the only one having this issue. It should NOT exist in this Community - we are sick enough without getting worse from Facebook drama. I've kept my mouth shut for a REALLY long time, but I can't stand by anymore. I need to speak up...because I'm not the only one who is going through this. I just don't see how people can advocate for GP but turn around and knock GPers down, especially when they mean well and want to help. Not to mention, I want to stand up for the Community and see if I can help heal and repair the damage.

Well, please know you're not alone. If you are being bullied, feel free to inbox me and we'll talk.

“They will hate you if you are beautiful. They will hate you if you are successful. They will hate you if you are right. They will hate you if you are popular. They will hate you when you get attention. They will hate you when people in their life like you.

They will hate you if you worship a different version of their God. They will hate you if you are spiritual. They will hate you if you have courage. They will hate you if you have an opinion. They will hate you when people support you. They will hate you when they see you happy.

They just hate.

However, remember this: They hate you because you represent something they feel they don’t have. It really isn’t about you. It is about the hatred they have for themselves. So smile today because there is something you are doing right that has a lot of people thinking about you.”

― Shannon L. Alder

Mental Health and Gastroparesis: Weight Gain & Anxiety

Chronic illness can be hard on anyone, especially when it's invisible. And, it's not just chronic illness or invisible illness, it's mental illness as well. It's hard to convince people that you're sick when you look fine on the outside but inside is a different story. When people doubt you or tell you that your illness is all in your head, you start doubting yourself. You get depressed and anxious because you are scared to tell anyone about what is really going on with you. You start cutting yourself off from your friends, your family. You isolate yourself because you'd rather be alone than deal with the fallout of someone not believing you or your illness. People don't understand what they can't see. A family member, whom I'm close to, just recently told me I have a mental illness, my gastroparesis was in my head, and that I was a drug addict for taking medication prescribed to me by my physician. When people say hurtful things like that to you, it takes its toll on your psyche. You get depressed and you feel like you have no one to turn to who really understands what you're going through.

I want to also say that the mental healthcare in this country is sorely lacking. It's gotten better from the asylums that were around at the turn of last century, but not by much. I've been in mental hospitals visiting people and they terrify me. They do not receive the adequate care that they really need. It bothers me how these people are neglected and not helped like they should be. It almost feels to me like they're locked in a room and forgotten because they are an embarrassment to society. We can do better. No one should be judged by their mental illness, period.

Anyway, I have a few stories to share from friends of mine who have dealt with similar things, due to their invisible chronic illnesses that I want to share. They were kind enough to share their stories with me so I will post them below.

"My journey living with Gastroparesis & DTP
By: Sarah (and copyrighted but I have special permission to use it)

Until now, I've had the heart but not the drive. The pain to turn into production, but not the passion as motivation... That all changed for me the night a friend wanted to be a lantern to instill light to my candle. I felt ashamed by what GP has taken, afraid of offending to explain its torture on my self worth & the emotional pain has held me back from being open with fellow sufferers due the the somewhat negative aspect of this disease has had on my life over the last couple of years.

MY STORY SO FAR PART 1

Nevertheless, I now am sharing with you my journey into unknown territory in the hope it may lessen the same lonely isolation for others, that I once felt. I had always been a nervous eater, sporadic appetite & bowels that were sensitive to upheavals & stress... I always thought everyone was the same. It began with tests for motility, barium swallow & X-rays.... I'd never heard of motility disorders causing conditions that made eating so painful, I had always believed I had IBS or colitis of my bowel, nevertheless here I found myself in consult with surgeons who wanted to place a PEG & I wasn't ready. I never went back for another consult, I was afraid & I never considered that although I had forced food down, that the reason it rarely gave me energy was because it wasn't being digested, these idea's just weren't my issue, so I thought. I had an obstruction that landed me in hospital as a child, it was a volvulus (twisted bowel) apparently from stress, but that was before I was diagnosed with the genetic connective tissue disorder called Vascular Ehlers Danlos Syndrome (https://en.wikipedia.org/wiki/Ehlers%E2%80%93Danlos_syndrome), as an adult 20+ years later...

It is Spring.... I have realized that although I'm aware of issues with my digestion increasing recently, I have no explanation for the weight loss since weeks before that would suffice my doctors enough to run more tests & neither do I want anymore days in labs at the local hospital. I'm tired, emotionally drained & yet I feel walking is my only hope to ease the discomfort & pain after eating my boiled egg, so I set off walking. I had not long lost a friend, a teenage mentor from complications to diabetes, causing him to no longer be able to attain adequate nutrition, he always had encouraged me to keep eating. Alex was a brilliant youth worker to me in an orphanage & I felt my emotions needed clearing after this tragic loss. I walked miles, I turned a corner as pain surged up my neck through my shoulders into my jaw from my chest, I stopped... took out my nitro spray & prayed it would give relief, the heart thumped harder the pain slowly subsided but the threat loomed & all the while I knew my nutrition was missing something, something vital for my heart to react this way. I managed to get home after stopping in at a shop for a drink of water, but later that night I knew I would need an ambulance.

The egg I had eaten earlier wasn't enough even though my stomach was distended & still felt full, I knew Something was terribly wrong. I dialed 000 & the ambulance came sirens blaring. I was whisked off to hospital where my bloods revealed via a PICC line that my potassium was dangerously low, possibly from vomiting, but more from lack of food. My stomach was really bad the week before, so I had hardly been eating...

MY STORY SO FAR PART 2

The next morning my doctors consulted with me, my poor intake of food & lack of potassium was affecting my heart rhythm in a life threatening way & they wanted to find out why my stomach wasn't emptying properly. My GES score was at 197 mins, this was done with cupric acid that Ai ate mixed into eggs & toast, then recorded by exhalations into 1/2 hourly bags, meaning I had severe delayed emptying time. I didn't think this was a major issue, I thought it was more an issue that I could only eat certain foods without excruciating pain & nausea.

I was admitted into CCU where further tests revealed Long QT Syndrome, Gastroparesis/Digestive Tract Paralysis & Dysautonomia (https://en.wikipedia.org/wiki/Dysautonomia). I was scheduled for a lower NG tube placement & feeds were commenced. It was hard, really hard accepting that due to my stomach issues, I was no longer able to rely on my stomach for my nutritional requirements. My kidneys did not store normal levels of potassium & in my case this was deadly. For weeks I was tube fed, months went by... those months became a year & 1/2, then two years.

Before it was decided best I had my tubes placed in the duodenal jejunal junction for best possible absorption. In the last few months leading up to now, my specialist told me this Christmas just gone he wanted me to give my system one last chance to gain some tone, he explained that when a muscle isn't used for any length of time it atrophies or wastes & the only way to retrain those muscles is to use them. An even harder exercise for someone with EDS. As I had already had to retrain my swallowing to ease eso-tracheomalacia.

I left with my fiancé after becoming teary, resigned to give my stomach & intestines one last chance to gain back some control I would only use the referral for the tube replacement if it became too much. Not wanting to give up over Christmas & New Year with family, each day I pushed myself to keep trying, all the while praying it would work & give back some muscle strength & better motility... I'm stubborn, I know it to be true & I never want to give up especially when I'm told if I do, then that is it. But for me to accept that maybe this was the best I would get my stomach, I had to hit rock bottom so to speak. In the time over Christmas & New Year the pain & discomfort has been so extreme that I have had to revisit the possibility of needing surgical intervention for my nutrition. Things have been exacerbated by a mass about the size of a clenched fist becoming more exacerbated by trying to eat & digest food. I have now two herniations one epigastric & the other umbilical & mow, this "mass" to yet be identified... this is my story so far....


MY STORY SO FAR PART 3
I lay here now after writing this, there may be gaps I hope those reading can understand, they are not intentional but the life of someone with this condition is a constant battle not to allow pain & discomfort unsettle their resolve to fight through. Have I got the strength to fight it & if so for how much longer? I'm not sure, but there is one thing for certain I won't go down easy, I'll give it all I have, if that brings legacy to all who have gained their wings from this dis-ease then so be it! This is for all who know the life we live & struggle forward anyway!& my darling Fiancé of whom I wouldn't still be here without."

My friend Shannon was brave enough to share her story with me:

"I was first diagnosed with PTSD bipolar depression when I was 11 years old after being brutally raped I was sent to a mental hospital and was there for 3 weeks while they tried to get my medication right and they felt that they had the right medications so they discharge me also at that time my mother left me with my grandma and took off I haven't seen her in 23 years my grandma is my supporter my rock my caretaker when I was little I got pregnant at the age of 14 had my daughter when I was 15 and I don't regret it at all my grandma helped me raise her so I would do it right she'll be 27 this year and she has A4 year old daughter my little granddaughter who I love so much and sometimes because of my illness and my depression I sometimes say that I would kill myself if I didn't have my granddaughter this disease has taken away so much I was a nurse for 12 years did medical research so I gave people experimental medication I traveled the country I'm learning about new studies and research and I even went out of the country to Canada and Dubai which was amazing in Canada we stayed in a castle I can't remember the name of it it was something French like something France it was amazing and we were there for 4 days I went to Denver San Francisco Dallas New Mexico twice it was amazing it was I was on top of the world I was making a very good amount of money. But then suddenly in 2008 I started vomiting and I couldn't stop my son was twelve at the time and he had to call an ambulance and he was scared he didn't know what was going on and luckily his dad was closed so his dad came and picked him up but I stayed in the hospital for 3 days with an NG tube in my nose and they couldn't figure it out so they told me to go see a GI which I went and saw dr. Lee Mitchell he's a blessing and he said he wanted to run tests on me he knew right away when I told him my symptoms what was going on he knew exactly what tests to run.

so I had the gastric emptying study twice to confirm definitely that I had gastroparesis he put me on Reglan Zofran, Protonix, Phenergan and that's what we were going to hopefully manage it well after about a hundred admissions to the hospital he told me that I was in end-stage gastroparesis and the only thing that was going to help me with the gastric pacemaker I had the pacemaker put in March 2nd 2014 and three Fridays ago I got so sick I refuse to go to the hospital because the ER doctors don't know anything about gastroparesis they don't know how to treat it they wouldn't treat my pain because they think I'm a drug seeker and one time I went and the doctor they drew my blood and nobody came in to give me my results so I went looking for the doctor he came in and told me that my blood hemolyzed so he pulled the number out of his ass and told me my potassium level was 7 I told him how can you give me a number when my blood hemolyze and it's no good so you don't know what my potassium levels are you don't know what any of my blood work is so when I called him out he felt bad and he's like well what if the VA give you and I told him zofran and Reglan I said and she didn't treat my pain.

I don't know if he felt stupid or what but not less than two minutes after he left the room I was given Dilaudid and Phenergan it was amazing it would I was on top of the world I was making a very good amount of money. But then suddenly in 2000 and a tie started vomiting and I couldn't stop my son was 12 at the time and he had to call and ambulance and he was scared he didn't know what was going on and luckily his dad was closed so his dad came and picked him up but I stayed in the hospital for 3 days with an energy to ban my nose and they couldn't figure it out so they told me to go see UGI which I went and saw Dr Lee Mitchell he's the blessing and he said he wanted to run tests on me he knew right away when I told him my symptoms what was going on he knew exactly what tester run so I had the gastric tempting study twice to confirm definitely that I had gastro Brisas he put me on Redlands zofran, protonix, Phenergan and that's what we were going to hopefully manage it well after about a hundred admissions to the hospital he told me that I was in in stage gastro prices and the only thing that was going to help me was the gastric pacemaker I had the pacemaker put in March 2nd of 2014 and 14 and three Fridays ago I got so sick I refuse to go to the hospital because the ER doctors don't know anything about gastro Brisas they don't know how to treat it they wouldn't treat my pain because they think I'm a drug seeker and one time I went and the doctor they drew my blood and nobody came in to get me my results so I went looking for the doctor he came in and told me that my blood hemelyzed[sic] so he pulled a number at of his hat and told me my potassium level was 7 I told him how can you give me a number when my blood hemelyzed[sic] and its no good so you don't know what my potassium levels are you don't know what.

For some reason it's not letting me go any further. But anyway they didn't know what my levels were so he just threw out a number so I filed a formal complaint against them but I saw them I knew surgeon yesterday and he took my battery and it is completely dead which would explain why I went through a violent violent flare 3 weeks ago butt I have seen a psychiatrist after I was diagnosed and he's helping me with the correct mental medications that I need because of my disability paperwork and through my history I already know I was diagnosed with PTSD bipolar depression anxiety OCD and person with borderline personality disorder I get so sad and I cry all day long because this is taking away my career my family my children well one of my children says I'm a hypochondriac but we don't talk that much but I don't know how I can be a hypochondriac when they know I have an incurable condition which that makes me sit and cry and cry I am so anxious that I am on to anxiety medications I don't sleep and I'm on two different sleeping medications when I get sick my husband yells at me I think because he's scared but because he's over it because he's gone to the ER with me over a hundred times he's visited me over a hundred times he's traveled an hour and a half away to see me at two different hospitals this condition I'd rather have cancer then have this condition if I didn't have my granddaughter I'm mentally unstable I would kill myself."

Cheryl's Story:

Shannon's Story:

[sic]"Hi Emily it's Shannon L. I was first diagnosed with PTSD bipolar depression when I was 11 years old after being brutally raped I was sent to a mental hospital and was there for 3 weeks while they tried to get my medication right and they felt that they had the right medications so they discharge me also at that time my mother left me with my grandma and took off I haven't seen her in 23 years my grandma is my supporter my rock my caretaker when I was little I got pregnant at the age of 14 had my daughter when I was 15 and I don't regret it at all my grandma helped me raise her so I would do it right she'll be 27 this year and she has A4 year old daughter my little granddaughter who I love so much and sometimes because of my illness and my depression I sometimes say that I would kill myself if I didn't have my granddaughter this disease has taken away so much I was a nurse for 12 years did medical research so I gave people experimental medication I traveled the country I'm learning about new studies and research and I even went out of the country to Canada and Dubai which was amazing in Canada we stayed in a castle I can't remember the name of it it was something French like something france it was amazing and we were there for 4 days I went to Denver San Francisco Dallas New Mexico twice it was amazing it was I was on top of the world I was making a very good amount of money. But then suddenly in 2008 I started vomiting and I couldn't stop my son was twelve at the time and he had to call an ambulance and he was scared he didn't know what was going on and luckily his dad was closed so his dad came and picked him up but I stayed in the hospital for 3 days with an NG tube in my nose and they couldn't figure it out so they told me to go see a GI which I went and saw dr. Lee Mitchell he's a blessing and he said he wanted to run tests on me he knew right away when I told him my symptoms what was going on he knew exactly what tests to run so I had the gastric emptying study twice to confirm definitely that I had gastroparesis he put me on Reglan Zofran Protonix finagrin and that's what we were going to hopefully manage it well after about a hundred admissions to the hospital he told me that I was in end-stage gastroparesis and the only thing that was going to help me with the gastric pacemaker I had the pacemaker put in March 2nd 2014 and three Fridays ago I got so sick I refuse to go to the hospital because the ER doctors don't know anything about gastroparesis they don't know how to treat it they wouldn't treat my pain because they think I'm a drug seeker and one time I went and the doctor they drew my blood and nobody came in to give me my results so I went looking for the doctor he came in and told me that my blood hemolyzed so he pulled the number out of his ass and told me my potassium level was 7 I told him how can you give me a number when my blood hemolyze and it's no good so you don't know what my potassium levels are you don't know what any of my blood work is so when I called him out he felt bad and he's like well what if the VA give you and I told him zofran and Reglan I said and she didn't treat my pain I don't know if he felt stupid or what but not less than two minutes after he left the room I was given Dilaudid and finagrin it was amazing it would I was on top of the world I was making a very good amount of money. But then suddenly in 2000 and a tie started vomiting and I couldn't stop my son was 12 at the time and he had to call and ambulance and he was scared he didn't know what was going on and luckily his dad was closed so his dad came and picked him up but I stayed in the hospital for 3 days with an energy to ban my nose and they couldn't figure it out so they told me to go see UGI which I went and saw Dr Lee Mitchell he's the blessing and he said he wanted to run tests on me he knew right away when I told him my symptoms what was going on he knew exactly what tester run so I had the gastric tempting study twice to confirm definitely that I had gastro Brisas he put me on Redlands zofran protonix Finnegan and that's what we were going to hopefully manage it well after about a hundred admissions to the hospital he told me that I was in in stage gastro prices and the only thing that was going to help me was the gastric pacemaker I had the pacemaker put in March 2nd of 2014 and 14 and three Fridays ago I got so sick I refuse to go to the hospital because the ER doctors don't know anything about gastro Brisas they don't know how to treat it they wouldn't treat my pain because they think I'm a drug seeker and one time I went and the doctor they drew my blood and nobody came in to get me my results so I went looking for the doctor he came in and told me that my blood hemelyzed so he pulled a.number at of his ass and told me my potassium level was 7 I told him how can you give me a number when my blood hemelyze d and its no good so you don't know what my potassium levels are you don't know what[sic]

[sic]For some reason it's not letting me go any further. But anyway they didn't know what my levels were so he just threw out a number so I filed a formal complaint against them but I saw them I knew surgeon yesterday and he took my battery and it is completely dead which would explain why I went through a violent violent flare 3 weeks ago butt I have seen a psychiatrist after I was diagnosed and he's helping me with the correct mental medications that I need because of my disability paperwork and through my history I already know I was diagnosed with PTSD bipolar depression anxiety OCD and person with borderline personality disorder I get so sad and I cry all day long because this is taking away my career my family my children well one of my children says I'm a hypochondriac but we don't talk that much but I don't know how I can be a hypochondriac when they know I have an incurable condition which that makes me sit and cry and cry I am so anxious that I am on to anxiety medications I don't sleep and I'm on two different sleeping medications when I get sick my husband yells at me I think because he's scared but because he's over it because he's gone to the ER with me over a hundred times he's visited me over a hundred times he's traveled an hour and a half away to see me at two different hospitals this condition I'd rather have cancer then have this condition if I didn't have my granddaughter I'm mentally unstable I would kill myself
I am so sorry that happened to you but I want to commend you for being brave enough to share your story with me. It will help other people. ❤[sic]

[sick]Thank you Emily I follow you and your notifications every day and I'm sorry that you have this condition too I'm sorry I'll everybody on the GP Pages have this condition Please share my story if you want to I don't have any friends I lost all my friends when I got sick I don't have anybody to talk to I sit around the house I clean what I can because I also have had one back surgery and 3 neck surgeries so I suffer from chronic pain so I can only you know clean so much I have to sit down I clean something but my house is super clean I don't know what to do so I just sit here and then I watch TV and that's depressing sometimes and I need to stop watching the news but I have you know all the news people on my Facebook I mean I do want to know what's going around in the world but I don't like this sad stuff and what's making me really really sad is that Trump is going to be our president who makes fun of disabled people who abuses women sexually and me being a rape victim Survivor that's a slap in my face I don't know if I'll ever get over my rape and that was when I was 11 so 30 years ago I don't have a therapist to talk to because I can't afford it but in my husband he keeps quitting jobs like crazy it's like he doesn't want to work but he has an amazing trade he's an AC man he can make a lot of money and he quit his job just recently and he was out of work for 2 months but he just started a new job this week so let's see how long he keeps that so I'm constantly worrying about money about our bills about me being able to get to the doctor on my surgery I have to pay my copay which he promised that we would have so this is my depressing life I have no one[sic]"

**NOTE: THIS IS NOT EDITED FROM THE ORIGINAL I RECEIVED.**

This is Christy's Story:

"I've been battling mental illness many years before I was ever diagnosed with any GI issues. When I was a teenager around 15/16, I was diagnosed with depression and was started on antidepressants. My depression was so incredibly bad I would remain in the basement watching movies and have no ability to do anything really. Going to school was challenging and I'd often end up calling my mom to come pick me up.

When I was 24, I was diagnosed with gastroparesis, eosinophilic esophagitis and IBS. I was experiencing major issues eating, digesting, and maintaining proper nutrition. At 26, I was diagnosed with Bipolar II disorder, which more accurately described my incredible depression that I was experiencing.

When I was diagnosed with GP, I experienced mourning for my former self that could eat normally. I realized that I would never be able to be "normal" again and it was very sad and caused my depression to worsen for a time. Eventually I adjusted and learned to accept my new self.

When I started seeing a new psychiatrist, the one who diagnosed me with BP II, I started adding several medications to my regimen. I also found that I was having issues breaking down and absorbing tablets. I started explaining this to my Dr, who tried working with me by prescribing capsules and liquids, but she made it seem like it was too much work as well as not necessary.

I'm 28 now and have experienced many different Drs reactions to my gastroparesis and BP II. It can be frustrating because they do not always understand the issues that come with the two co-existing, medication absorption, pills being choked on or stuck in my throat due to poor esophageal motility, as well as high probability of my pooping out whole tablets.

I'm lucky that today I have a wonderful NP that is handling my psychiatric end of things. She understands more than any other psych dr has, and even more importantly, listens to what I have to say about both my psych and medical problems. This is the biggest issue right now in the medical community, Drs don't listen to those who are chronically ill and do not take their experience with their own diseases and syndromes when making medical treatment plans. Just because we do not have MD behind our name, sure as hell doesn't mean that we don't know our bodies, what we generally need and especially doesn't mean we should be ignored.

Having mental health issues is tough but with co-existing GI problems, it creates a whole new world of challenges that most Drs aren't willing to look at overall, instead of individually. This leads to wrong treatments, under diagnoses, and bad medical care in general."

To the Loved Ones of a Person Living With Chronic Pain

This is from an article I found online that I wanted to save. It's from http://themighty.com/2016/01/to-the-loved-ones-of-a-person-living-with-chronic-pain/. I wanted to put it in my blog so that I could come back later and refer to it and find it if I needed to. I like having things in one place so it's easier for me to find it. This is a great article and I wanted to save it in order to share it with others. The writer put down exactly how I felt and this article really spoke to me. I hope it will speak to you, too.


And it reads,

"I’m not sure if chronic pain is isolating in and of itself, but it’s often the lack of understanding that (at least for me) makes me feel alone sometimes. Sometimes the lack of empathy is more unbearable than the pain itself, like you’re living in a state that is so entirely foreign and inconceivable to most people — and that is what makes it alienating.

Good portions of my day are usually spent being guilt-tripped by friends that I haven’t seen them, haven’t FaceTimed them, never call, never text, etc. Before I always felt the need to apologize and explain myself, but most of the time now, I am so sick of constantly having to explain myself. People don’t realize the fear — the fear of being judged, the fear of not being understood, the fear of feeling vulnerable. That fear strengthened my relationships with close friends and loosened my ties with acquaintances.

In my worst pain, all I wanted was to be distracted. I wasn’t capable mentally and physically of contributing to conversations, and constantly explaining to friends and family what my pain is like, the current updates on my health and hearing the (mostly) senseless feedback was unbearable. (Keep in mind, for most of my grueling experience with pain, I had gained weight I am slowly losing, and compared to what I used to look like, I generally feel like I let myself go. My hair and make up is never done. I dress for comfort now mostly.) Sometimes I avoided people entirely because as nice as it is sometimes to be asked how you’re doing, it can also be a pain if you’re being asked 15 times in a row. I already do this with doctors almost every day.

Some people have taken it personally that I haven’t tried to “rekindle” relationships with them. The best response I have to this is that it is nothing personal. I am generally so overwhelmed by all the things I have to do and am so exhausted that old friends unfortunately get passed to the wayside so I can maintain the friendships for the friends who aren’t just “checking in” but calling me every day. To me, the people who loved me at my darkest are the ones I prioritize.

Here are several things I believe need to be known:

In general, I would rather hear about you. Your day, your funny experiences, etc. than talking about my health problems. I generally feel uncomfortable having to explain myself, and for some people, it’s just too damn sad, so at the risk of making it uncomfortable, let’s keep it about you. Or just send me funny things. I always appreciate it. No one understands how boring this gets sometimes. I generally try to “shield” people from how bad my pain really is.

If I cancel plans last minute, it’s never because I don’t feel like coming. I am in my house, doctor’s offices or volunteering for a good percent of my day, so if I can handle it, I always want to go out. Some people are good about this and some obviously aren’t. I’ve just decided I can’t feel bad about making decisions that may affect other people. I’m responsible for myself and need to take accountability for my actions. No one understands my body like I do, so I have to make judgment calls…whether it upsets other people or not.

I try to explain to people that my days sometimes feel like a sh*tty, charged iPhone. I have limits. There is only so much I can do every before my battery dies and everything takes some battery life. Especially those moments when you think you have 10 percent left and all of sudden you’re at 2 percent. Sometimes this becomes an anxious social situation. Situations where I am out with friends and I haven’t driven — I have no control. If I need to go home but can’t, I panic. I avoid these situations as much as possible.

Having a “good day” doesn’t mean I’m better; it just means I’m having a good day. And even if I’m smiling and looking like I’m having a great time, there’s a good chance I’m screaming internally. If I need to leave right at the end of a dinner or cut things off early, again, it has nothing to do with you.

When I say that I can’t be cured or that I’ll never be healthy, I’m not trying to be negative. My life is not CrossFit. I have boundaries and limitations. This is my reality and I’ve come to terms with it. I’ve accepted it. I hope others do, too.

Don’t be offended if I forget things you’ve told me. When my pain is bad, my memory can be extremely foggy and my short-term recall is really bad. Most people refer to it as “fibro fog,” and it’s a real thing. Google it.

I don’t want to be known as “the girl with pain.” I want to be normal and treated like everyone else. I still want to be invited to things. I hate to play the pain card and truly feel happiest when I’m in a “normal” setting.

Just because you see me posting online doesn’t mean I’m feeling better. Sometimes I am in a ton of pain but my choices boil down to sitting and crying or distracting myself.

I always try to be in a good, positive mood, but sometimes when you’re running on no sleep with lots of pain, it compromises your mood. Sometimes I just don’t want to do anything with anyone. Or talk to anyone. I need my alone time.

Small, thoughtful gestures mean the world to me. Actions always speak louder than words.

Dealing with chronic pain drains me every day. People who have known me forever have known me as an extrovert, but that is changing.

Even if I’m having a bad day or a lot of pain, your problems are still valid to me. Never think that because my problems seem more serious that I don’t want to listen to yours. I never purposefully try and make it a competition.

I still struggle with figuring out what I need from my friends and family sometimes. I hope people understand that I never intentionally try to discuss my health for pity, sympathy or attention. I wish people could understand that dealing with this is just a big part of my life, whether I want it to be or not. I try really hard to help people that are dealing with the same problems. I don’t want to be pitied, babied, fawned over or put on a pedestal. And certainly not be to looked down upon or judged.

It’s when people are uncomfortable with me that I become uncomfortable with myself. But I am comfortable with myself, and I own who I am.

Follow this journey on Slightly Distressed Damsel.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images"

A Letter From A GPer to A Friend/Family Member

I wrote this letter as a note on my public Gastroparesis Facebook page (www.facebook.com/emilysstomach) today, trying to get out how I feel while trying to get other people to understand how lonely gastroparesis can be. I wanted to get out my feelings and I wanted to try and let my friends and family know why I am the way I am right now. It's not because I don't want to go out, and it's not because I don't want to spend time with them - smells from a movie theatre make me ill and I'm worried I'll vomit in the middle of a movie or an outing, embarrassing myself. So, I wanted to write a letter to them to help them understand why I am usually home but that I don't like to be home by myself. I would definitely welcome company. This illness is isolating and it is depressing after a while because people give up on you. No one wants to call you to ask you to hang out knowing you will say no and no one really wants to come over to your house to hang out when they want to go out and see a brand new movie they've been waiting months for. So, I wanted to put how I felt down in words. You'll find those words below:



Dear Friends and Family,

We are fighters. We are overlooked because our illness is invisible...but the pain is visible behind our eyes if you look closely. We are strong...we have to be stronger than most in order to survive on a day to day basis. We are all from different walks of life. You may not know we suffer, but we do. Gastroparesis can touch anyone at any age - children, teenagers, adults, the elderly...and there still isn't enough research to determine why.


GP is caused when the vagus nerve is damaged, and nerve damage in any other part of the body is severely painful, so imagine having nerve damage in your stomach where you have a lot more nerves, sensitive nerves. Vagus nerve damage can be caused by a variety of factors, like diabetes, and other reasons.

People tell us gastroparesis shouldn't hurt, but it does. If other people go to the doctor and tell the doctor they have nerve damage in their knees or their back, they're treated for pain and it's understood that nerve damage there hurts, so why would nerve damage in the stomach, with the most sensitive nerves not be as painful or more painful?

If you meet someone with gastroparesis, please be kind. We are all fighting a battle to stay alive, not to starve to death, and to try to be as normal as possible. We miss being able to eat during holidays and to take part in things that we used to. Most of us can't because we lack the energy, which stems from lack of nutrition, but it's not by our choice.

If you know someone with gastroparesis, be kind to them. Give them a hug. Invite them out anyway and if they can't go out with you, please try to make an effort to go to them to spend time with them at their house. Loneliness is hard and so is isolation. We miss company and being social. Some of us just need to be near a bathroom but we miss our friends and family.

Most of the time we feel like we live in a prison we can't escape from. Just please try to be patient and try to understand what it's like walking in our shoes. It's a hard road, and all we need is a little bit of support and understanding. That would mean everything to us if people took a little bit of time to understand what we go through on a daily basis and still wanted to be around us, despite all of this. It would make us cry with joy just to have people understand, come over, and even do something low key like watch a movie with us. It would mean more to us than you would ever know, just that simple act of kindness.

We are not making excuses when we say we cannot go out. We are not trying to avoid anyone. We aren't trying to hurt anyone's feelings. We feel devastated enough that we have to stay home most of the time, but that doesn't mean you're not welcome to come over and visit. We would love that. So, for those of you who have friends with #DTP or Gastroparesis, please know that it's NOT you or anything you did - not your fault at all, we just cannot do the things we used to do and that kills us a little bit inside. It's just as hard for us to adjust to this as it is for you.

We want normal back, or as close to normal as we can get. So please, try to make the effort to come over to our house and distract us. We need it. We need the happiness you inject into our lives. We need you. We need our friends and family and support. You are our lifeline to the outside world. You don't realize how important you are to us, but you really are. Thank you for being a friend, even though we know it's hard on you. Thank you for being you.



Sincerely,
GPers Everywhere


**Please support my Facebook page, where I wrote this note to depict how I was feeling today, by kindly clicking on “like” to show your support and to raise awareness for gastroparesis on Facebook: www.facebook.com/emilysstomach

Post Implant Surgery & Updates

I had back surgery a week ago on Tuesday and had my staples pulled out on Tuesday of this week. I thought the staples weren't going to hurt as they were being pulled out buy I was so wrong. The doctor started removing the staples and I started crying. She asked me if she needed to stop for a minute to get myself together but I declined and told her to keep removing the staples. She said that I was a trooper and kept pulling them out. I guess my back healed over or around the staples to cause that much pain. Now, my back looks like something in The Nightmare Before Christmas.

I have to stand or sit up straight so that the implant works but it has helped control the knee pain. When I recover and my back heals completely, I am going to work myself back up to hiking because I miss it so much. That should help with the gastroparesis. I've also been chewing gum. Even though the smell and the taste of it makes me ill, I'm chewing it anyway for my digestive system.

The vomiting has cut down from 8 times a day to about 4 to 6 times. I am hoping it will continue to fall because my pain response in my knee has been corrected. My stomach still has a lot of cramping - even with the Bentyl and Levsin. I need to make an appointment with my GI doctor for more anti-nausea medicine. I wish he would just give me a year's full of refills on phenergan and zofran. I'm going to need them for a while. Does anyone else have this issue? I'm actually curious. i have to use a four columned pill box because I have so many to take. My pills could be a meal in themselves.

I need to find a primary care doctor where I live. I need to keep all of my records in one place and a PCP would be easier to get into. If you have anyone you think is amazing, just message me or write me an email.

My back is really sore since they pulled out the staples and my stomach is cramping so badly that I double over in pain. I have to ride in a car with a bucket but it's just dry heaves at this point because there is nothing in my stomach to vomit up. The acid has burned my esophagus so my voice fades in and out. It almost feels like strep. I'm on medication for acid reflux but it doesn't seem to help the vomiting. It's hard to swallow my pills.

I've also been very lethargic with almost no energy. It takes everything I have to get out of bed. It's not that I'm sleepy, I just have no energy. I know that I'm dehydrated but I've been trying to drink as much as I can.

I just don't know what to do about my stomach. I don't know how to live with this. It's hard to adjust to and my friends don't understand. Most of them don't come over anymore to hang out with me, even though they know it's hard for me to leave my house. Four or five of my friends have come over to spend a few hours with me but that's about it. I don't even get calls to makes sure I'm OK. It depresses me, especially since I am part of a fraternity. I know people are busy and I'm just wallowing in self pity. But sometimes, you just need that extra boost of confidence from your friends, you know? I wish I could make them understand what I am going through. I mean, I know that I'm sick but they scheduled events and then don't invite me to them or tell me about them. It hurts. I just feel so isolated. My house used to be the hot spot but not anymore.

So, I'm up at 4am, vomiting on and off, and trying not to re-injure my knee. I managed to feel well enough to leave the house this past weekend for my husband's 42nd anniversary of the founding of his chapter of his fraternity at the TELLUS. I also attended the wedding of my friends J.D. & Lisa. They had a beautiful wedding and I was so excited to leave the house.

I just feel really alone, which is stupid because my husband has been amazing. My sister is here to help me, also. She just went through a bad breakup so I'm worried about her.

Well, enough about me for now.

TDRL; The Implant is helping, I feel alone with my friends, and I'm vomiting.

Picture of my back after the stapes were pulled out.

Getting ready for the wedding and classing it up!

Getting ready for my husband's fraternity chapter's 42nd anniversary.