painting of a woman crying

I know you are a good teacher…and I know you really do care about the well-being of my 16-year-old daughter. And yes, I am more than aware that she has missed a lot of school this year. But perhaps you are not aware that recently she received the diagnosis of “significant gastroparesis.”

Let me help you to understand what this means to her and her daily life.

Gastroparesis is the literal paralysis of the stomach. In short, her stomach does not empty properly. On days when her symptoms are flaring, she is dealing with chronic vomiting, diarrhea, nausea, gastrointestinal reflux and stomach pain. She also struggles to eat and absorb vital nutrients. There is no cure for gastroparesis and treatment options are very limited.

Perhaps you are not aware that she is on multiple prescription medications right now to help treat her gastroparesis symptoms, but there are no options left as there are only three drugs approved to treat this condition, and she is not able to take two of them because of her other medical issues. It might also help you to know that our local GI specialist wants her to be seen by a doctor located out of state at a Children’s Hospital who “specializes in treating the real sick, medically complex and fragile kids,” according to the nurse I spoke to by phone recently.

 

I know you are aware of her moderate to severe bilateral hearing loss, and that she has additional medical challenges, as I have sat in IEP (Individual Education Plan) meetings and explained each condition in great detail to you and the others at school. I am sure it is hard for you to relate to…as many of our friends and family members still struggle to fully understand our family’s challenges.

But please trust me that I have seen firsthand how pain affects my child. I have sat with her many nights while she has cried in pain. And, I have been with her through more than a dozen surgeries, including brain and spinal surgery. And, I was the only one with her when she had post-operative bleeding, not one, but two times…and trust me, I can do one hell of a Shirley McClain impression at 1:00 a.m. in the lobby of the hospital’s PICU.

Why? Because I know my child better than anyone else on this earth.

I know in my gut when something is really wrong…call it instinct or whatever, but know I have a damn good track record of meeting my kid’s needs. So please do not question my ability to read her pain levels and know I will do whatever it takes to help relieve her suffering.

Yes, I know it can be confusing, because when the pain starts to get really bad, she begins to shut down. Almost as if willing it to stop. When this happens, you and others might think that she is being lazy, stubborn or just plain rude. But I know differently.

When I see her eyes glaze over, her shoulders hunch and her head drop down, I know she is doing all she can to not give into the pain.

It makes me so angry that my baby girl hurts every damn day, both physically and emotionally.

In addition to dealing with gastroparesis, she is also dealing with chronic pain and fatigue from multiple medical conditions, including chiari malformation, Ehlers-Danlos syndrome, Klippel-Feil Syndrome, congenital scoliosis, congenital heart block, insufficient mitral valve, dysautonomia (causing hypertension) and hearing loss. Let’s not also forget the fact that at times she often feels depressed about her health challenges. Most importantly, please know that the pain and symptoms must be very severe before she will complain, because it has, in many ways, become her normal.

She is stronger than most adults I know.

This child, my beautiful daughter, has powered through premature birth, low birth-weight, multiple medical diagnoses, surgeries, lost hearing and developmental delays, both physically and socially, since the day she was born.

She is resilient.

Throughout her life, she has worked so very hard despite her pain, fatigue and hearing loss and she has become an incredible violinist, student and young lady. And through it all, I have been right there beside her each and every step of the way.

painting of a woman crying

She has the strength of a warrior packed into her petite frame, but when she says she is not feeling well, she means it.

Please do not question her.

And know she continually “powers through” more pain and adversity in one week than most people will in their entire lives.

So please, be patient with her.

And most importantly, please know she does not need to be pushed as much as she needs to be understood.

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First off, let me tell you about my life with gastroparesis (GP). GP is known as “paralyzed stomach.” This means for some reason the stomach no longer has the ability to move food through and out of it. It delays the speed in which the intestines can move the contents. How does this affect me? I worked as a LPN (licensed practical nurse) for 10+ years until I could no longer do my job.

GP is waking up and heading straight for the trash can or toilet to vomit. Waking up every day with body cramps that feel worse than the flu.

GP is gambling my life by taking a medication to treat symptoms – not cure –because the side effects can be life-threatening.

GP is looking seven months pregnant just from three or four bites of food.

GP is never knowing when my bowels will move, either with help of daily laxatives or additional laxatives. Then I have diarrhea and often anal leakage.

 

GP is severe belly pain and often chest pain at an eight to 10 out of 10 on the pain scale.

GP is not being able to eat due to nausea from the smell.

GP is holes in my teeth and hair falling out due to malnutrition.

GP is many trips to get IV fluids for dehydration.

GP is being belittled by doctors who aren’t knowledgeable of my condition.

GP is losing all my friends because they don’t understand why I can’t go out.

GP is arguments with my husband because I couldn’t clean the house.

GP is losing my ability to maintain employment, resulting in fighting the state for disability, thus resulting in a stranger deciding my fate.

GP is losing my independence and having to move in with my parents.

GP is being told, “It’s all in your head,” “All you do is sleep,” “You’re just drug-seeking,” “If you’d move around more, you wouldn’t be so sore,” “You’re just lazy,” “If you’d go off some of those medicines (23 total), you’d feel a lot better,” “You’re worthless” and “It’s not that bad, you’re just milking it so you don’t have to do anything.” I hear these phrases almost every day of my life from the people who are supposed to support me.

Having no income is difficult with GP. I must depend on someone else to help buy meds.

In many ways, GP has negatively affected my life.

But GP has also made me stronger than I thought possible.

GP has made me some of the most amazing friends online who understand my battle. These friends are the amazing GP warriors who fight the same battle.

If I’ve learned one thing from GP, it’s Carpe Diem (seize the day).

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Thinkstock photo via Pimonova.


Med City – a.k.a. Rochester, Minnesota – is the original location of Mayo Clinic. In its 127-year history, Mayo has gone from innovation to innovation. The town’s population is around 111,000 and 34,000 of those residents are employed by the Mayo Clinic. Most impressively, 1.3 million people from all 50 states and up to 150 countries come there for care. So basically it’s a city of sick people.

For many, the image of a city full of sick people is an image of visibly sick people. But my visit over the past three days has been anything but. I’ve seen a city of invisible illness.

 

Sure, there are people who are fighting their illnesses visibly. People wear high-tech respiratory masks to protect their immune system or pull oxygen tanks. Some are everyday wheelchair users and bring wheelchairs from home. Every business – from Walgreens to various hotels – has the distinct blue leather Mayo Clinic wheelchairs, which everyone, including myself, uses when they need to use them. But other than that, when you see a group of people walking down the street, it’s often impossible to know who is the patient and who are the caregivers.

I overheard a group of couples on the shuttle from my hotel talk about how delicious a local restaurant was and I became jealous, knowing I’ll never eat there due to my illness currently being labeled as gastroparesis. However, one of the women went on to explain that she had such poor circulation that blood pooled in her feet to the point of turning them purple and walking caused excruciating pain. I would have never known. However, being in Med City, I know a certain percentage of these “normal-looking” people are here because they are so sick, or perhaps their local health care system, regardless of it grandness or accolades, has given up on them.

Anyone who doesn’t believe in invisible illness, anyone who thinks you have to look like the man in a wheelchair on handicap placards to own one, anyone who has told a chronically ill young person “they’re too young to know what it means to be tired/sick/in pain, should come to Med City, sit on a bench outside of the Mayo Clinic and listen to our stories.

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Thinkstock photo via rruntsch.


Editor’s note: If you live with an eating disorder, the following post could be potentially triggering. You can contact the Crisis Text Line by texting “NEDA” to 741-741.

Contrary to popular belief, sometimes losing weight is not a good thing. Sometimes it’s the opposite of your goal and every time you step on the scale and you weigh less, or your leggings sag in the butt it’s actually quiet devastating.

Before gastroparesis, I was very fit and athletically strong. I actually didn’t realize at the time how good of a condition my body was in, until it started to fail me. I was going to school, working, held up a social life all while still going to the gym, lifting pretty heavy. That all exhausted me, but it was a very wild and free part of my life so I didn’t care.

Fast forward to gastroparesis and my body was the opposite. I could not work, could not go to school, could not work out, and had no social life. When I was undiagnosed, throwing up all day long multiple times a day, keeping absolutely nothing down, my weight dropped to a very scary place. My family and fiancé were absolutely terrified. I didn’t really fully see it until I was TPN and gained weight back. At one point I was actually starving to death. No, I’m not saying that out of extreme hunger — I mean it. I was admitted for low labs and started TPN which saved my life.

Since losing all the weight and gaining it back, it has been a little weird because I’ve seen my body in so many conditions. I’ve seen it at its peak, and at its weakest and malnourished. I lost all my confidence because I felt like I lost all my curves. My body got so weak I could not stand for a full shower, going grocery shopping and walking around a store was a struggle, I was so fatigued. I even passed out due to lack of nutrition.

 

So you would think after giving nurses and doctors all your extensive history they’d have compassion and empathy, but some of the most ignorant comments have come from them.

“I wish I could get sick just to only lose weight!” No, you don’t. I promise puking every day is not glamorous.

“Well, at least you get to be skinny!” Actually my body was stronger, and more me before.

“You weigh less than you guessed, and less is always better!” Did you not hear me say I was malnourished before and have been struggling with maintaining weight lately? Did I not say my nutrition needs to get better? And did you not hear me say “aww man” with a bummed look after I saw I lost weight?

We live in a world that is fueled by the idea that being skinny means being happy, but that’s not the case. Things didn’t go quite as I hoped when I got off TPN. And people seem to be under the impression that because I am no longer on TPN I am better, which as much as I wish that was true… it’s not. I was so much more fit on TPN. An abdominal hernia/surgery, an extremely bad flareup in my shoulder I’ve had a couple surgeries on so I need physical therapy, and lately struggling with maintaining weight because of gastroparesis has really messed me up.

I know this is just going to be a lifelong struggle I will face (unless a cure comes out!). But I’m not down for the count, I will get back to where I want to be!

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This morning, just like every morning, I got up, went to crush my meds and put them through my feeding tube, and had Facebook open on my phone on the counter as I was doing so. One of my favorite comedians, Jim Gaffigan, posted a video that I wanted to watch. I hit play, and watched it as I used my mouth to push down on the syringe.

And what I saw sent me into tears. Because this wasn’t stand-up. It hit so incredibly close to home. Ten seconds into the video, I saw myself in Jim, as he began to use his mouth to push a syringe into a feeding tube — into his wife, Jeannie’s tube (Jeannie is recovering from surgery to remove a benign brain tumor).

And in that moment, I felt truly understood.

I got my first PEG tube when I was 21, nearly four years ago now, for gastroparesis. Since then, I’ve struggled a lot — notably in accepting the fact that this is something I will likely need in some capacity for the rest of my life, and that it isn’t something to be self-conscious about. Since I’m not 100 percent dependent on tube feeds, I can hide the fact that I have one pretty well from most people.

Feeding tubes are “weird” and “gross” and “for old people” — or at least that’s what many people seem to think — and seeing a celebrity like Jim Gaffigan be so open and honest about tube feeds made me realize that maybe I don’t need to hide things. My family and close friends are the only ones I openly speak with about having a feeding tube. I’ll eat something if I’m out with friends or coworkers, and then I’ll vent my G-tube if I’m not feeling well. I live on overnight feeds so I don’t go out in public with my pump. High-waisted bikini bottoms that hide my tube have become my best friend in the summers. I haven’t been on a real first date in almost four years because I’m afraid of the day I have to explain my health to a potential boyfriend.

But today, watching that video, I can use my GJ tube either as an obstacle to living my life, or I can take my experiences with my GJ tube to educate others and help de-stigmatize the topic of tube feeding and invisible illness.

Today, I choose to educate.

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Knowledge is not the same as understanding. Knowledge is a mere accumulation of facts and data, while understanding requires a bit more. It demands insight, sensitivity, and intimacy with any given situation – and, sometimes, it necessitates you have borne a particular burden. I am convinced there is a basic lack of understanding regarding the effects chronic illnesses have on the lives of those they affect. But though I recognize this deficiency, I do not believe it must necessarily lead to discord and strife. Please allow me to explain.

You may have knowledge of my illness. Perhaps you can even define it, explain it, and list its symptoms. But many have not lived with gastroparesis nor felt its effects in their own lives. Those who are unaffected cannot fully appreciate the agony, the mental and physical torment of this punishing disease that I experience. Many have not met the struggle of being surrounded by a virtual cornucopia of foods, of savoring their tempting aromas, of longing to take just a bite, and of ultimately having to reject them. They have not faced the fear of perhaps never again being able to delight in these tantalizing treats, nor have they desperately clung to the slowly fading memory of what it was once like to partake of them.

A large portion of the population has not experienced the overwhelming nausea which comes out of the blue and which, at times, tethers you to the couch – or the bathroom floor. Nor have they ever endured the never-ending daily pain which cannot be tamed and which drives you to tears, confines you to your home, chains you to your heating pad, prevents you from sleeping. It haunts you as you lie in bed contemplating how you might face it again tomorrow. They have not watched their bodies wither away, felt the energy drain from them with the slightest exertion, nor endured the bone-deep fatigue and weakness which weigh on both body and soul.

They may have knowledge of the available treatment options associated with my condition and be able to recommend the top physicians in the field, but they cannot comprehend the depths of the disillusionment and rejection which accompany failed medications and contemptuous, cold-hearted physicians. They have not felt the condescending glare of the doctor who has accused them of imagining or inventing their symptoms in hopes of gaining sympathy, attention, or mind-altering medications, who has blamed them for the very existence of their illness, or who has admonished them for not trying hard enough to overcome its effects. They have not spent their life savings, travelled cross-country, and held out hope that a certain new doctor will take their case and finally “see” their agony and alleviate their misery, only to experience the utter devastation of having their hopes dashed when this “tops in the field” doctor turns them away with a simple, “I’m sorry, but your case is too complex.” They have not anticipated healing and relief only to discover their “miracle” medicine comes with serious risks and harmful side effects or that, in reality, it simply has no effect on their symptoms at all.

Some may “know” what is best, endlessly reprimand me for my lack of “positivity,” and direct me to “fight through the pain,” but they are not the ones who must look my child in the eyes and tell her yet again, I will miss her latest performance, school activity, or birthday party. They are not forced to deny their spouses a celebratory evening on the town or miss the family Christmas gathering because their bodies refuses to cooperate with the demands of such an outing. Many do not bear the burden of being unable to work or provide financially for their families, help with basic household chores and errands, or contribute in any productive way. Countless people do not ceaselessly relive the memories of earlier times when such tasks were easily performed and such activities were readily attended, nor do they live with the reminding surroundings of all they have lost and all they can no longer accomplish. They do not experience the guilt of constantly disappointing others.

No, they may know of my illness, but they may also lack understanding on a meaningful level.

Nevertheless, they need not wholly comprehend the full effects of my illness to offer kindness and co-exist with me in peace and harmony.  I will settle for knowledge alone, if that knowledge is unaccompanied by judgment and reproach. It is not necessary for people to intimately understand my deepest longings, aches, and needs, nor my fears and regrets, so long as they will simply offer support in the ways I desire and not in the ways they deem best. Others must merely recognize I am truly ill and doing the best I can to survive, to thrive, despite this difficult disease. People need only sit by my side, present a listening ear, believe my struggles are genuine, offer comfort, respect my choices, acknowledge my efforts, forgive me my failings, and refrain from criticizing that which you do not, and cannot, comprehend.

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Thinkstock Image By:  Sensay

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