WEGO Health Awards

I've been nominated for 5 Wego Health awards for my work with Gastroparesis. I don't think I'm going to win but it's a nice self esteem boost. I've been nominated for "Best in Show: Facebook," "Best in Show: Blog," "Advocating for Another," and "The Lifetime Achievement Award."   EDIT: Now I am nominated for five WEGO Health Awards.  The polls in "endorse" people have ended, so that may judge all of the six thousand nominations they got this year. So many people are doing SO many wonderful things! It helps me to reestablish my goals and switch around priorities.

My nominations, can be found on the WEGO Health Awards:



https://awards.wegohealth.com/nominees/12466

I've been writing in my blog about Gastroparesis since I was diagnosed in 2012. Back then, the only information about Gastroparesis was only available on Mayo Clinic's website. When I was diagnosed, I was scared because I knew I had a chronic illness that there was not a lot of information about.  I took pictures of my testing, uploaded it, and started writing in my blog about it. I wanted to share information with others but also save people money on repetitive testing because I know what it's like not to have health insurance, and to choose between going to the doctor and paying the rent for the month.

I have also helped build up support groups and pages on Facebook to help those who have been newly diagnosed with Gastroparesis. I helped build up the GP Community on Facebook with a handful of wonderful women.

I've been published on The Mighty: https://themighty.com/2018/09/cyberbullying-gastroparesis-chronic-illness-community/

But I will be honest, the awards would be a nice boost to my self-esteem, but the fact that I was nominated for them and the fact that somebody did that, that means more to me than anything. 

I've always been about helping people and to me, that comes first. 

I know doctors give out my blog to new patients and I know that United Healthcare gives out my blog as well, but I didn't start my blog for that. 

That's a nice benefit, but I started my blog for those who suffer with GP to try and bring awareness to us and for better treatment options. That's always been my goal.
I'm proud that now there are so many ways to learn about GP and it's not just Mayo Clinic's website anymore, because there are so many sources out there to choose from. I feel like I had a small part in that. 

I just want treatments to help us because I'm tired of losing my friends to this illness. 

This is for them. I dedicate all these nominations to the people I've lost due to this terrible illness. I'm doing this for them and I'm doing this for the people that have been newly diagnosed who are terrified. I just want them to know they're not alone, and there is a support network in place for those who feel like they are.









I also am doing it for more awareness and education for doctors so that when we are sick enough to go to the Emergency Room, we are NOT treated as drug seekers. Doctors can't even see past that to help us. I've been in the ER, vomiting up blood in front of the doctor, and he thought I was just there for pain meds. He also told me that GP didn't hurt. So, I asked him if nerve pain in the back hurt. He replied yes. I asked him if nerve pain in the knee hurt, Again, he replied yes. So, I asked him, why wouldn't it hurt if your vagus nerve was damaged and the nerves in your stomach were damaged? He looked at me and told me he had never thought of it that way before. So, at least I was able to change one doctor's mind. I had a friend who was ill who went to the ER and was dismissed as a drug seeker as well. She died later that night in her home. I'm just tired of this and I want this to change.

If you want to endorse me the link is:

https://awards.wegohealth.com/nominees/12466

This has been some much needed good news.  I have felt terrible and had a hard time in the past week and a half because my Uncle passed away last week. Dealing with grief on top of Gastroparesis is awful, but I need to write a separate article about that. I know everyone deals with grief in their own way, but this was surprising and like I said, great news. I don't expect to win, but it's so nice to be nominated. I have dealt with so much adversity in the past few years...being cyberbullied, knocked down, and having to rise up and be the bigger person by staying silent is hard, REALLY hard.  But, I am human, and I make mistakes. 

I get sick and I cannot do a lot of the things I want to do because of my illness. I have a lot of ideas, it just takes me a while to act on them and get them out there because I vomit a lot, which makes me weak, and now my back and my oral health are deteriorating.

I just hope that maybe this blog might win an award, but I write for you, the person taking the time to read all of this right now. YOU matter. YOU are NOT alone.  I want to make sure you know that. Any questions that you have, any support you need, and anything you want researched, I'm happy to do that. I try to keep the Financial Assistance and Gastroparesis Support Resources articles up to date.  I remember having to choose between going to the doctor for the month or paying the rent because I did not have health insurance. When you have a chronic illness and no health insurance, things can get so rough. I am working on a new project that I should have out soon that I think will help a lot of you out there.  I'm planning on releasing it for Gastroparesis Awareness Month. I'm really excited about it and I hope you will be, too. 

Writing a Gastroparesis Book - And Need Your Help

So, I have been debating on whether or not to write a GP book for years, now. The reason I haven't done so yet is that I remember what it's like not to have health insurance and having to choose between the doctor and medications for the month or rent. However, I have put most of the pertinent information online for free, in my blog. I am working on my outline at present, before I start writing. I want to make sure I cover a lot of ground, and I do not want to lose focus on that.


I don't believe in profiting off of sick people. If this book does sell well, and that's a shot in the dark, I don't need the money so I could send it to a foundation I trust. That's if it sells well. If it does, maybe I can start a 501(c)3 in Atlanta, and expand across GA to help people to get to doctor's appts, fight with their ins companies for them, help them get assistance or something like that. But, if it went to a great cause, like helping others in the community find rides cheaply or at no cost to them, people who could help with insurance hangups, someone to fight for you with your doctor, I mean, I've got a lot of ideas. Please fill out the form below if you are interested in helping me. I will be glad to give credit where credit is due. I really do appreciate this, because I am so tired of losing friends. We need some help and I'm not saying I'm that person, but I'm going to try my best to write something helpful, and maybe it will be published. I hope if it is, that even if they just sell one, I hope it goes to the doctor/scientist who will do research for us. That's my fantasy. I try to remain optimistic. But, the form is below. Just fill that out and again, thank you.
















If you would like to contact me about the questions above, what I should include, and/or if you want to send me your personal stories with photos (I already have photos people have sent me of them before and after GP, which you can do too - or I'm working on a project on my page Gastroparesis - Emily's Stomach, "A Day in the Life of a GPer" which is an event that shows GPers without make up, hair done, no airbrushing or anything, just how we look daily with GP, if you want to send a picture like that. It's up to you).


You can email it to me at: emilysstomach@gmail.com


I know that this research is NOT scientifically accurate because I do not have access to your medical records or anything, but I still have A LOT of your Progressional Timelines that I wanted to graph and insert into the book. I would like you to email your timelines to me, but please let me know it's OK to for me to use your timeline results in my book, let me know how you want me to use your name, or if you would like me to change your name. I need a valid email address you're mailing it from, just in case I have any follow up questions. Your personal information will be respected because I respect privacy.

If this sounds like something you would be interested in (I was trying to find a correlation in us all), you can find out more information about it here:


http://www.emilysstomach.com/2018/10/request-for-gastroparesis-progressional.html


http://www.emilysstomach.com/2013/05/progressional-timeline-of-gastroparesis.html


I'm hoping, that even though my research is thorough, but not scientifically accurate, that someone will read the book who has the power to make this scientifically accurate and start up a research project.




I'm sure I may think of other questions and things later, but I REALLY appreciate any help you guys can spare. I'm going to include a very special thank you page to each person who emails me to help me with this. I believe in giving credit where credit is due. You guys are amazing and I really hope once I sit down to write this, that somehow, it will get to the right person who can do research for better treatments for us. It's not enough to survive, we need to LIVE too!












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A Doctor's Advice to those with Chronic Illness

My friend Tanya recently shared an article that I wanted to re-post. It's a great read! I was actually sitting in the middle of my floor, in my bathroom, crying, because pain and nausea keep hitting me in waves. I woke up gagging and vomiting from horrible night terrors that continued when I went back to sleep to round out my four hours of sleep last night. I saw this article and read it.

I forget sometimes that sometimes, as our own advocates, that we can come on too strongly to doctors. I definitely don't want to intimidate anyone, I just want help - as I imagine many chronically ill people feel. I think as someone who is chronically ill, we tend to give up on doctors before we even meet them because of past experiences with other doctors, specialists, etc. If you're like me, you've seen too many doctors to count. But, this doctor's advice brought me back down to Earth. I'm probably guilty of doing some of this so I wanted to share this article with everyone.

"A Letter to Patients with Chronic Illness
by: Dr. Rob BLOG LINK: HERE

Dear Patients:

You have it very hard, much harder than most people understand. Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can’t understand what your lives are like. How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like? How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue? How do you decide when to believe them or when to trust your own body? How do you cope with living a life that won’t let you forget about your frailty, your limits, your mortality?

I can’t imagine.

But I do bring something to the table that you may not know. I do have information that you can’t really understand because of your unique perspective, your battered world. There is something that you need to understand that, while it won’t undo your pain, make your fatigue go away, or lift your emotions, it will help you. It’s information without which you bring yourself more pain than you need suffer; it’s a truth that is a key to getting the help you need much easier than you have in the past. It may not seem important, but trust me, it is.

You scare doctors.

No, I am not talking about the fear of disease, pain, or death. I am not talking about doctors being afraid of the limits of their knowledge. I am talking about your understanding of a fact that everyone else seems to miss, a fact that many doctors hide from: we are normal, fallible people who happen to doctor for a job. We are not special. In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help. We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time.

But chronic unsolvable disease stands square in our way. You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you. We don’t want to face things we can’t fix because it shows our limits. We want the miraculous, and you deny us that chance.

And since this is the perspective you have when you see doctors, your view of them is quite different. You see us getting frustrated. You see us when we feel like giving up. When we take care of you, we have to leave behind the illusion of control, of power over disease. We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress. You are the rock that proves how easily the ship can be sunk. So your view of doctors is quite different.

Then there is the fact that you also possess something that is usually our domain: knowledge. You know more about your disease than many of us do – most of us do. Your MS, rheumatoid arthritis, end-stage kidney disease, Cushing’s disease, bipolar disorder, chronic pain disorder, brittle diabetes, or disabling psychiatric disorder – your defining pain - is something most of us don’t regularly encounter. It’s something most of us try to avoid. So you possess deep understanding of something that many doctors don’t possess. Even doctors who specialize in your disorder don’t share the kind of knowledge you can only get through living with a disease. It’s like a parent’s knowledge of their child versus that of a pediatrician. They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess.

So when you approach a doctor – especially one you’ve never met before – you come with a knowledge of your disease that they don’t have, and a knowledge of the doctor’s limitations that few other patients have. You see why you scare doctors? It’s not your fault that you do, but ignoring this fact will limit the help you can only get from them. I know this because, just like you know your disease better than any doctor, I know what being a doctor feels like more than any patient could ever understand. You encounter doctors intermittently (more than you wish, perhaps); I live as a doctor continuously.

So let me be so bold as to give you advice on dealing with doctors. There are some things you can do to make things easier, and others that can sabotage any hope of a good relationship:


Don’t come on too strong – yes, you have to advocate for yourself, but remember that doctors are used to being in control. All of the other patients come into the room with immediate respect, but your understanding has torn down the doctor-god illusion. That’s a good thing in the long-run, but few doctors want to be greeted with that reality from the start. Your goal with any doctor is to build a partnership of trust that goes both ways, and coming on too strong at the start can hurt your chances of ever having that.

Show respect – I say this one carefully, because there are certainly some doctors who don’t treat patients with respect – especially ones like you with chronic disease. These doctors should be avoided. But most of us are not like that; we really want to help people and try to treat them well. But we have worked very hard to earn our position; it was not bestowed by fiat or family tree. Just as you want to be listened to, so do we.

Keep your eggs in only a few baskets – find a good primary care doctor and a couple of specialists you trust. Don’t expect a new doctor to figure things out quickly. It takes me years of repeated visits to really understand many of my chronic disease patients. The best care happens when a doctor understands the patient and the patient understands the doctor. This can only happen over time. Heck, I struggle even seeing the chronically sick patients for other doctors in my practice. There is something very powerful in having understanding built over time.

Use the ER only when absolutely needed – Emergency room physicians will always struggle with you. Just expect that. Their job is to decide if you need to be hospitalized, if you need emergency treatment, or if you can go home. They might not fix your pain, and certainly won’t try to fully understand you. That’s not their job. They went into their specialty to fix problems quickly and move on, not manage chronic disease. The same goes for any doctor you see for a short time: they will try to get done with you as quickly as possible.

Don’t avoid doctors – one of the most frustrating things for me is when a complicated patient comes in after a long absence with a huge list of problems they want me to address. I can’t work that way, and I don’t think many doctors can. Each visit should address only a few problems at a time, otherwise things get confused and more mistakes are made. It’s OK to keep a list of your own problems so things don’t get left out – I actually like getting those lists, as long as people don’t expect me to handle all of the problems. It helps me to prioritize with them.

Don’t put up with the jerks – unless you have no choice (in the ER, for example), you should keep looking until you find the right doctor(s) for you. Some docs are not cut out for chronic disease, while some of us like the long-term relationship. Don’t feel you have to put up with docs who don’t listen or minimize your problems. At the minimum, you should be able to find a doctor who doesn’t totally suck.

Forgive us – Sometimes I forget about important things in my patients’ lives. Sometimes I don’t know you’ve had surgery or that your sister comes to see me as well. Sometimes I avoid people because I don’t want to admit my limitations. Be patient with me – I usually know when I’ve messed up, and if you know me well I don’t mind being reminded. Well, maybe I mind it a little.

You know better than anyone that we docs are just people – with all the stupidity, inconsistency, and fallibility that goes with that – who happen to doctor for a living. I hope this helps, and I really hope you get the help you need. It does suck that you have your problem; I just hope this perhaps decreases that suckishness a little bit.

Sincerely,

Dr. Rob"

I think this is amazing advice! I am guilty of putting up with jerks and avoiding doctors because of it. But, I hope this helps you in some way. It stopped me from crying earlier. <3

Gastroparesis and Me + Mayo Clinic Updates

I logged into Facebook today and got a really nice surprise. Tanya, from GASTROPARESIS AND ME posted this,

Gastroparesis is not something to turn away from. This digestive disease doesn't care what you have planned for your life. GP does what it can to debilitate, destroy, torture, and wreak havoc in any way it can. http://www.GastroparesisAndME.com/ for medical links and personal stories, as well as support from others like Emily and her effort to support others with GP. Thank you Em for all you do!!!

It wasn't over yet. She contacted me and asked me if I could help out her organization. I was elated! Tanya does really great things in the Gastroparesis community like trying to get legislation passed for Gastroparesis, updated medical news, and trying to spread awareness. I agreed, because it's an honor to work with her. I am not an admin of her GASTROPARESIS AND ME FACEBOOK GROUP as well as an admin on GASTROPARESIS AND ME'S TWITTER ACCOUNT. I'm currently working on trying to get her more "likes" on Facebook. She had 200ish when I started working on her page a few hours ago and it just hit 245. I hope more people will like her page because what she does is very important.

She also linked my blog along with LaShelle's from her website (posted above in the second sentence). You can click Emily's Stomach on her website and it will take you directly to my blog. I am really excited about that! When I started my blog, I never knew it would be this popular! I'm amazed and dazzled by all of you who read it. You really help me in ways you might never know. <3 I'm also working with another group that will eventually become a non-profit for gastroparesis but I can't talk about it right now. I'll announce it when it finally happens and we can all celebrate together! I finally heard from the Mayo Clinic. They set up appointments for me the first week of May. On the first day that I'm there, they're going to put a small tube down my nose and into my throat. Here's the diagram that came with my schedule:


I'm a bit nervous because they are going to do it while I'm awake, using numbing spray on my throat. I've been vomiting so violently and so much that I'm scared I'm going to vomit all over the person who is sticking that down my throat. The doctor wants to know if I'm vomiting up stomach acid. He has a suspicion that the acid is making the motility problems worse. I'll know more once the test is completed and I meet with him the day after. He mentioned stomach surgery before if the medication didn't work. I'm nervous but mainly I just want some answers so that I can go back to school in the fall. I can't take labs vomiting as much as I am now.

I took a picture of myself yesterday during a GP Attack that hasn't let up yet. So here is the Emo picture I took during my attack:



Overall, despite being ill, I've had a pretty good day full of good news. I'm very thankful for my friends and family. They lift me up when I feel discouraged. I did yesterday and everyone on Facebook tried to cheer me up - and it worked. I went to bed smiling.

My blog has had over 14,000 views! I can't thank you enough for reading. When I started this blog, I did it to keep track of my medical journey, tests, and hospital visits. I decided to write to help others through my own experiences - especially unnecessary tests. My blog has continued to evolve and I get messages telling me how much my blog has helped people. I want to say thank you. When I'm isolated at home because of GP, I can still feel productive and useful. I've always wanted to help others and I've always wanted to be a writer. I just never imagined that I would be a writer about a little understood and known illness.

Motility Specialist Follow Up

I had an appointment at 8:30am this morning with the Specialist but let me give you some background on the past two days. I was up all night, really, really nauseated. I took my pain medicine and my anti-nausea medication but it did nothing to get rid the knot in my stomach. To explain how my stomach feels - imagine you're nervous before a test and your stomach is in a huge knot. Then, add an intense burning, sharp pain like you've been sucker punched in the stomach with an ulcer. Then, imagine that you had food poisoning and you just felt like there was a giant greasy ball just hanging out in your stomach. If you combine all of those feelings, that's how I feel on a daily basis with the nausea. That's the best way I know how to describe it.

So, I was up all night getting sick. I thought maybe the vomiting would help but my stomach managed to spasm enough that I pulled a muscle.

I had an appointment scheduled for the Motility Specialist, which was lucky, and got to go in this morning to talk with her about my Smart Pill results. She said that the Smart Pill did show a delay in my gastric emptying, confirming what I already knew, I have gastroparesis. She told me I needed to follow up with my GI doctor now, so I'm wondering what was the point of seeing the Specialist if she's not going to treat me for this rare condition.

She did prescribe an antispasmodic, which should help with the pain after eating. That's leftover from the ERCP that my regular GI doctor did. However, both doctors cannot explain the vomiting. The best theory that I have gotten is from my regular GI doctor - the food that I eat sits in my stomach for days until I get food poisoning and vomit it up. So, essentially, I always have food poisoning. I have to make an appointment with the Nutritionist and come up with a diet plan.

Vomiting is also my pain response, so I hope that once I get this trial for my knee, the vomiting will be cut in half.

The Specialist then told me to see my psychiatrist because I'm already on an antidepressant and anxiety medication. The drug to help treat this is also classified as an antidepressant. You can read about Nortriptyline HERE.

I called his office and I'm waiting for him to give me a call and let me know if he will prescribe it. I just saw him two days ago, and he knows about my gastroparesis. I don't think he'll have a problem prescribing it but I would like to start it as soon as possible since it takes a while to work. This should help with the gastroparesis, some. I don't understand why the Specialist couldn't just prescribe it. It's not controlled. I get the drug interaction thing but she knows ALL of the medications I'm on. Oh well, I'll wait around and see what my other doctor says.

So, that's my news. Gastroparesis is confirmed, which I already knew it would be. I've had the ERCP and I'm going to try this medicine. I would really like to have my normal life back. I miss being a social butterfly and I miss leaving the house.

My friends and family have been a great support network. I cannot tell you how much it means to me for the encouraging words, funny pictures to cheer me up, coming over to hang out because you know I can't leave the house. It really does mean so much to me. And of course, for reading my blog. I wasn't expecting for it to be as popular as it is. I just wanted to say thank you to everyone for being there for me. It really does make me feel better knowing that I have such great friends and family, and of course, a wonderful husband. I honestly could not get through this without you guys.

It's also nice to feel validated that this isn't all in my head. I've gotten that from a few past "friends." I felt isolated for a while because people viewed me as negative and attention seeking, but I know my body better than anyone and I'm glad I stayed persistent. I try not to be negative but I have bad days just like everyone else.

If there is anyone out there who reads this blog and has medical issues, my advice is to find a doctor who will listen. I cannot tell you how many bad doctors I've gone through until I found someone who understood and helped. Keep trying. I know it can be discouraging but you have to be your own advocate.

My doctor was right about starting this blog, though. It has helped me to get everything out and to channel those negative feelings into something positive for someone who may have the same issues I do without a diagnosis. I think my friends understand me better now, too. You can tell someone you're sick all day long and they'll get annoyed at you for always being sick, but you have to help them to understand. This doctor is the best doctor I've had yet and I'm glad that I finally know what's going on.

It's hard living with a chronic illness and it can get you down ... but be strong and fight back. I am going to. I am determined to lead a normal life again, and I will; one day at a time.