Hello, my name is Stacey Moisant and I am chronically ill. My story began about 35 years ago when I was diagnosed with Diabetes Type I. I was sent to a hospital locally and for 2 weeks. I was taught how to take insulin multiple times per day and how to eat by measuring out my food; back then it was a ½ cup of this, 4 ounces of this, a small handful of that. I have since learned how to carb count and have been on an insulin pump for almost 20 years.
Diagnosis After Diagnosis
Then around 13 years of age, I began falling and having issues with both of my knees swelling terribly and being very painful. After four surgeries I was diagnosed with a “rare” form of Rheumatoid arthritis. I call it “rare” because it doesn’t show up in any of my blood work it only shows up in the fluid surrounding my knees. After multiple physicians telling me nothing was wrong or I no longer had rheumatoid arthritis I finally found a doctor who ran a test called Vectra DS which shows how severe my condition was. The results came back zero to 29 is low severity, 30-44 is moderate and 45 to 100 is high; mine came back as 52. My joints had already began to disfigure so my new physician started me on Humira. My hopes are that my joints stop moving and my pain decreases.
In the midst of trying to find a doctor to believe me about the rheumatoid arthritis, I started having severe abdominal swelling, I couldn’t eat without throwing up and in a great deal of pain. I was diagnosed with Gastroparesis. On top of being Diabetic, I had to learn what I could and couldn’t eat with this disorder. Pasta, pizza, potatoes, you know all the good stuff, was now off limits or at least limited … do I want to hurt, is that food worth the pain? Sometimes the answer is yes and sometimes it’s no.
A few years went by with no new symptoms, no new diagnoses, just living day to day. I woke up and my husband and I decided to go to the grocery store and I had a twinge of pain in my right back but really didn’t think much about it until half way through our shopping trip I doubled over in pain. We rushed home, I just wanted to lie down for a little while and see if it would subside. By this time my pain tolerance was very high and what use to by a 10 was now about a 6, so I lay down and about ten minutes later I rushed to the bathroom thinking I had to urinate and nothing, just more pain. I got my husband and he rushed me to the hospital to find out I had papillary necrosis in my right kidney. After about 15 surgeries to fix this, I am happy to report I have no further issues with my kidneys. They are hanging in there for the long haul.
At this time, I am now around 37 years old and I believe that my gastroparesis is acting up and I go to see my doctor after being in the ER due to vomiting and nausea etc. He took a CT scan and decides he needs to do a procedure to go in and look at my stomach and pancreas, the procedure is called an ERCP (endoscopic retrograde cholangiopancreatography). After my first ERCP I was diagnosed with a Sphincter of Oddi dysfunction and had to have a stent placed to keep that area from swelling shut. Then, I had to have another and another and another. One of the side effects of this procedure is pancreatitis and after the second procedure I again doubled over with pain and was rushed to the ER to find out I indeed had pancreatitis. Now you talk about pain but until you have experienced pancreatitis you have no idea what pain is. I thought I was dying. Due to the pancreatitis I have had multiple ERCP’s, 3 GJ tube placements, multiple hospitalizations and countless doctor visits. My GI doctor and I feel like family. He is an amazing man who has kept me alive for 11 years now.
Keep Living, Keep Moving & Finding Joy
I worked in the medical field for years; working at our local children’s hospital helping children to realize that yes they are sick and uniquely different, nevertheless you keep moving, keep living, keep finding joy in life and “if there is a will there is a way”. I have since been deemed disabled but I still make it one of my missions that with all of the above diagnoses and along with multiple others like hidradenitis, cellulitis, Morton’s neuroma, dyshidrotic eczema, GERD, fibromyalgia, high cholesterol, thyroid disorder, obstructive and central sleep apnea, obsessive compulsive disorder, depression and anxiety to name a few I can still get out of bed and live a productive life taking care of myself and my family.
I am now 46 year old and truly believes that because I am chronically ill doesn’t mean I can’t find good things in life. I keep myself busy with crafts and pen addictions and taking care of my ailing parents. I try to do everything with a smile on my face and love in my heart. I have one child in which we adopted at the age of 3 now going on 20 years old. She is my greatest achievement in life. I never thought I would have children or be able to raise I child due to all of the pain that I go through on a daily basis but with God’s help and direction I keep moving forward.
Check out Stacey’s instagram to follow her chronic illness journey.
I once spent eight months out of the year in the hospital. As the months passed and my emaciated frame sunk further into the gurney, I was denied the basic luxuries like a homecooked meal (if I could eat) or sleeping alongside the purring of my precious kitten. I struggled to make the best of it. It was during my eight-month hospital admission that I created the blog Hospital Princess, along with its affiliated YouTube channel and Instagram. What started as a way to update friends and family about my situation morphed into an outlet for me to spread awareness.
What prompted such a long hospital admission? You may ask. I’m currently 22, however my 17th birthday was celebrated with flushed cheeks, itching skin, and my heart pounding like a subwoofer in my chest. While I had been sick prior to that, I was suddenly unable to go anywhere or do anything without rebounding allergic reactions. My world as I knew it was irrevocably altered upon receiving the diagnosis of Mast Cell Activation Syndrome.
Mast cells are allergy cells within the immune system. The role of a mast cell is to protect the body against pathogens. My mast cells take the task of eliminating pathogens a little too seriously. I began experiencing life-threatening reactions triggered by all foods and food proteins in the air, perfumes, cologne, lotions, detergents, hormonal fluctuations, strong emotions, hot or cold temperatures…you name it. My family could not even cook in the house without putting me in danger. They had to convert the garage into a kitchen in order to prepare and eat their meals.
The traditional treatments for Mast Cell Activation Syndrome failed. As a result, I was hospitalized in order to begin the last resort option known as the continuous diphenhydramine infusion. Diphenhydramine is simply the fancy term for Benadryl, and I had (and still have) it infusing into my central line every second of every day in order to control the severity of my reactions. Since I had been reacting to my feeding tube formula and IV nutrition, the Benadryl pump allowed me to tolerate some nutrition at the very least.
We assume that my case of Mast Cell Activation Syndrome is secondary to the genetic connective tissue disorder Ehlers Danlos Syndrome (EDS). EDS has also caused a myriad of other maladies: Dysautonomia/POTS, Chronic Intestinal Pseudo-Obstruction, Gastroparesis, and more. My doctors and I continue to search for answers because if we can pinpoint the root cause or contributing factors and treat them, perhaps my mast cells will improve.
The Reality of My Stay in Hospital
Consider the various stressors of the hospital. I am sure you can recall the physical and emotional burdens whenever you or a loved one is admitted for medical care. You know, the restlessness, the incessant beeping of IV pumps, and the early morning awakenings just to repeat the same story you already told umpteen times before. Patients and families contend with all of the above while healing from illness—fighting to get better, for the chance to improve, to overcome, to love, to live. This was my life for nearly a year.
Being chronically ill, I spent my leisure hours in the confines of my
four-bedroom walls. I was always a bit stir crazy, craving a change of scenery.
But when I was finally discharged after a gruesome eight months, I celebrated
the victory of returning to the place I once complained about so often. The
nurses cheered as I exited the oncology ward.
Unfortunately, I couldn’t leave the hospital behind in the same way that the majority of hospital patients do. I left garbed in a filtered mask with a nasal cannula hidden underneath. On the handles of my custom wheelchair hung a backpack containing four pumps that infused medications through the central line in my chest, and formula into the tube on my abdomen that leads directly into my small intestine. At that moment, I found that my true self became lost within the tubes and lines protruding from every orifice of my body.
However, I knew that I had the power to eventually find myself again.
The Judgement I Receive from Healthy Outsiders
Now, I can’t step a foot outside my house without receiving the questioning looks of pity. People undoubtedly feel sorry for me. They see my wheelchair, the tubes, the miscellaneous lines protruding from every orifice of my body, and their eyes drop in sullen despair. I know what they are thinking because their gaze reveals their innermost thoughts. Instead of seeing a successful young woman with ceaseless opportunities ahead of her, they assume the opposite—that my disability renders me an invalid, incapable of participating in what life has to offer. To them, a life with limitations is not worth living. On the rare chance that conversation does ensue, they are surprised to learn I am in college and soon-to-be married; as if someone with health challenges cannot accrue accomplishments in school, careers, and relationships.
The stigma of disability constructs this pattern of erroneous misconceptions. Interactions with total strangers provoke the insecurities of the girl I was when I was leaving the hospital four years ago—the one who struggled to recognize she was more than her illness. As those feelings resurface, I am reduced to an object made up of medical equipment, devoid of emotions, in which they direct their sympathy. It never crosses their mind that I am a real human being.
My goal as a Chronic Illness Advocate is to prove that having a chronic illness does not diminish a person. Depending on continuous infusions, a feeding tube, and various other medical interventions for survival, is not easy, yet it is possible to live a fulfilling life despite chronic illness—even when your daily routine starts to resemble a never-ending hospital admission.
About The Author
Cheyanne is a 22-year old college student hoping to pursue a career as a counselor in chronic and terminal illness. In her spare time, she runs a small Etsy business and writes about psychology and neuroscience for CogniFit. Although Ehlers Danlos Syndrome and its comorbid diagnoses, Mast Cell Disease, Dysautonomia, and Chronic Intestinal Pseudo-Obstruction present its challenges, she strives to prove that life with chronic illness is still worth living through her blog and its affiliated YouTube channel at hospitalprincess.com.
I have lived with Chronic Pain and Chronic Fatigue for over 30 years now…I recently turned 57. My illnesses include Fibromyalgia, Osteoarthritis in all my major joints, Myofascial Pain, a spinal condition called D.I.S.H., Gastroparesis, Atypical Trigeminal Neuralgia, Diabetes Type 2 and Bipolar Disorder. Most of my illnesses are invisible. To look at me, you would probably think I’m a healthy woman, but in reality, I’m suffering every day, all day. I use a cane for mobility and often a walker, and when the distance is too far, I use a wheelchair. Despite that, I have been on the receiving end of some hurtful comments and I’d like to address them here.
1. “You don’t look THAT disabled – are you sure you need that cane/walker/wheelchair?”
Yes, I’ve actually been asked that. Now, it’s important that you understand I’m a great advocate for myself, and I don’t put up with nonsense like that. My reply was “exactly HOW disabled do I need to be to use these mobility aids?”. They, of course, had no answer for that. Please don’t make comments about our abilities or lack of them. I do what I need to do to keep my body moving. I’m the best judge of my condition and what I’ll benefit from, not you. Unless you’re walking in my shoes, please don’t judge me.
2. “Oh, I’m tired too, I know exactly how you feel.”
Fatigue…how I hate you so. And unless you’ve been diagnosed with it, you have
no idea what ‘tired’ really is. Chronic Fatigue leaves you so debilitated that
you could sleep for 16 hours and still wake up exhausted. You have to rest
after having a shower or bath because you’re shaking so badly from the
exertion. Chronic Fatigue is like swimming in concrete, every movement takes
enormous amounts of energy and the simplest tasks like brushing your hair or
washing your hands take effort and concentration.
Don’t forget about things like working or raising kids when you have Chronic Fatigue…you feel like a lousy employee or an unfit parent when you suffer like this. Every task is a Herculean feat and there’s no way to win. Oh, and it’s every day and night too!
3. “Have you tried (fill in the blank)?”
I appreciate that people want to help, I really do. The thing is, I’m desperate to feel better, so I’ve tried everything that’s out there. Every drug, every therapy, every alternative option including CBD products, Essential Oils, Nutraceuticals… you name it, I’ve tried it.
When you make these suggestions to me, you make me feel like I’m not doing enough; and it diminishes the hard work that I HAVE been doing to get well. Again, I know people are trying to help, but just stop it. You’re not helping at all. If you really want to make a difference, ask your loved one or friend with a chronic Illness if there is any research you can do for them in regards to new treatments. That way, you’re not taking control of the person’s health, but you’re still offering to be helpful. And if we say ‘no thank you’, take that at face value and don’t surprise us later with a list of “things” that might help.
4. “Well, you don’t look that sick.”
This goes hand in hand with number one. First of all, how sick do I have to look to satisfy you? Do I need to have dark circles under my eyes, and have greasy hair? Wear sloppy clothes because I’m too ill to care for myself? I may be chronically ill, but I still take pride in my appearance, especially if I’m going to be in public. Sure, it takes effort, but to me, it’s worth it. Some makeup, a nice outfit…it doesn’t take much, but I want to look as good as I can because my illnesses already robs me of so much in my life. Why should I let them take away from my personal appearance as well? And no offense, but I’m not living my life to meet your standards anyway…I’m living life to meet MY standards, which haven’t changed from before I became ill.
5. “When are you going to get better? You’re always in poor health.”
Hmmm, let’s define the word “chronic” for you. It means ongoing, persistent, without end. As in, my Chronic Illness is never going to go away. I may have periods of remission where my body is cooperating and things are better than they have been, but that doesn’t mean the illness has gone away…it just means it’s in remission. At any point, things can change and I could find myself bed-bound. Again.
When you ask a person a question like this, it only serves to depress us. We’d love to get better and live a normal life again, but this is a life sentence that we’ve been handed; and there’s no parole. Please don’t say this to someone living with Chronic Illness…tell us instead that you hope things will improve for us or that you’re not giving up hope for better days ahead. That’s what we hope for too.
I know that people often don’t mean to be rude or ignorant, but sometimes the questions seem to be asked without people thinking first. Please remember that we have been living our lives like this for probably a long time, and we’ve heard it all before. Think before you speak and put yourself in our shoes before you ask a question. Would you want to answer it? If the answer is no, then don’t ask. Just tell us you’re thinking of us and sending good thoughts. We appreciate that the most.
Pamela Jessen lives in Langford, BC Canada. She is a blogger who writes about Chronic Pain, Chronic Fatigue and Invisible Illness at pamelajessen.com She also writes for The Mighty, PainResource.com and various independent publications. Pamela is also a Patient Advocate with the Patient Voices Network in BC. She sits on 4 committees and one Provincial working group and has also been involved in advocacy work at the Canadian National level as well. Pamela is married to her amazing husband Ray and they have one cat named Dorie.
I have been awake all night. Not that that’s unusual. I have Sjogren’s Syndrome which, at this point in my life, causes me a lot of body pain. But last night I was struggling with a “side effect” of my Sjogren’s called Gastroparesis, a stomach condition characterized by pain and nausea. It kept me from getting comfortable enough to fall asleep no matter how I twisted and turned and puffed and propped my pillow. My stomach hurt. A lot. So much so, it felt like a Shuriken Star was lodged in it and any movement I made would push one of the points into the lining of my stomach, which was already swollen and irritated to begin with.
Gastroparesis literally means “Stomach Paralysis” according to the straight Latin definition, but most cases are only partial paralysis cases. This means that food moves through the stomach more slowly than it should. Also called slow motility, Gastroparesis affects approximately 1.5 million Americans with 100,000 suffering from a severe form and 30,000 failing to find relief from conventional medical therapies. Diabetics, for some reason, are more likely to develop this condition than the general population.
The most common symptoms are severe abdominal pain, chronic nausea and vomiting, bloating, early satiety, and a feeling of fullness. These symptoms occur due to the fact that food sits in the stomach instead of moving through it. Food can build up and the body feels the need to expel it, or the stomach pumps out extra acid to try to break it down. Or it can pass into the intestines in a lump which will cause a whole host of other end issues. For some, Gastroparesis becomes so bad that they have to have a feeding tube placed to get enough nutrition into their bodies.
So this morning, after being up all night not digesting my dinner, my stomach was sending me mixed signals.
“I’m starving!…No, I’m going to burst!…No, I’m starving…”
I don’t know if this is normal for everyone with Gastroparesis, but it happens a lot during my Gastro flares. It seems like my body knows how long I haven’t eaten for and my hunger center will trigger even though my stomach isn’t done processing.
When I was tested to diagnose Gastroparesis – called a Radioisotope Gastric Emptying scan – I was told the radioactive eggs (yuck!) I had to eat should have moved from my stomach in the four hours I was there. They did not move at all. So I don’t think it’s a stretch that I could have most of my evening meal left in my stomach the next morning. Or that it has moved just enough for my body to tell me to eat again even though I am still in pain.
So, what caused me to get to this point? Most likely I overate. (I did.)
The most common treatment for Gastroparesis is dietary monitoring. Basically, Gastro sufferers eat smaller, more frequent meals that contain foods that are termed “easily digestible”. For me, that means avoiding most fresh vegetables, fruits, and now, most meats. You see, chicken and pork can be tough and fibrous and very hard to digest. So can ground beef. For someone who does not care for the usual non-meat sources of protein and can’t eat nuts, this newest issue is problematic. But last night, I was craving a burger, and I ate one. You’d think I’d know better by now…
Within an hour of eating, the pain started. And the queasiness. And the burping. I know gas isn’t listed as a common symptom, but I get it so bad that my husband calls me his ‘Little Sailor Girl’. And all I wanted to do was lay down, but getting comfortable was impossible. So was moving around. I could feel the food moving in my stomach whenever I changed positions. And whenever that happens, my body wants the food out. Sips of cold water help to ease the nausea, but on nights like this, I can’t take any medications, so painkillers or nausea pills are out. It’s a “ride it out” situation that will finish with one end or the other, not surprisingly, in the bathroom.
By now, you all know that this attack lasted through the night, meaning I rode out the pain and nausea. There will be continued pain as my misguided food choice finishes its journey. The pain is caused both by gas and extra acid, as well as the fact that food that sits in the stomach tends to ball up in a wad and progresses through the rest of the GI tract that way. But at least for now, the worst was over. The next steps would be addressing the fact that my stomach thought it was hungry.
At times like this, when my Gastroparesis is in a flare, I have a ‘go-to’ list of foods. The most common is Maple/Brown Sugar flavored Cream of Wheat. It’s mushy and bland with just enough sweetness to be appealing. And when I was pregnant, my OB told me sugar settles the stomach and to keep popsicles on hand for my ‘morning’ sickness. (I still do this; only now, I use them for Gastroparesis.) My other go-tos are cinnamon toast, Ritz crackers, chicken soup, jello, popsicles, rice pudding, and Gatorade. I will resort to these foods until my pain and queasiness dissipate. Then I will replenish my stock for next time. Because unfortunately, Gastroparesis flares can happen even when I make good food choices.
Gastroparesis: What We Know
There is no single cause of Gastroparesis, though it’s known that damage to the Vagus nerve is usually involved. This nerve controls the muscles of the stomach. What causes damage to that nerve however, can be one of a multitude of things, from surgery to diabetes (the most common cause) to medication. There are also cases that cannot be clearly diagnosed and are labeled ‘idiopathic,’ meaning of unknown origin. In my case, it’s the fact that I have Sjogren’s along with some of the medications I take that is causing my Gastroparesis. Connective tissue diseases are also listed as causes for Gastroparesis. The fact that I recently had abdominal surgery and then my condition worsened is not coincidental, either.
Gastroparesis: What I Know
As of this writing, I have been diagnosed with Gastroparesis for six years. I still do not have a complete handle on the dietary modifications I need to make. For the most part, that is my fault. I don’t have the willpower to give up chicken and burgers and crunchy stuff. But I know I have to. Not just due to the overwhelming evidence in the literature, but just due to my personal experiences when I indulge.
Life has become a true love/hate relationship with the food I eat. But that relationship is of my own making. At least I have the diagnosis and the knowledge I need to make my Gastroparesis more manageable. There may be no way to truly control it, at least for me, but there is a way to reduce the number and intensity of the flare-ups. And that, in my book, makes all the difference.
About the Author:
Sharilynn was born and raised in Rochester, NY. She was diagnosed with Sjogren’s Syndrome four months after her second son was born. Her boys are now in their 20s and she has since developed MCTD, Inflammatory Arthritis, and Fibromyalgia. Sharilynn raised her kids, worked a career, and continued to run a household with her husband all while being diagnosed with these autoimmune conditions. She currently writes about these experiences while being a volunteer kitten cuddler at a local rescue.
It was a glorious day to have our lunch break outdoors. Imagine my surprise to feel stinging on my shoulder. Since I was wearing a wide-necked peasant blouse and we were sitting under an olive tree in the courtyard, I presumed a bee got me. But repeatedly? Thus began my forty year journey with invisible disabilities.
We—my husband Joe, our seven and ten-year-old sons, and myself—lived on the Seminary campus overlooking San Francisco Bay in beautiful Marin County, California. I had worked as an office worker so Joe could complete his B.A. after he finished 4 years in the Air Force. I then worked in Library Services at the Seminary while Joe worked on his three-year master’s degree to be a pastor and Army Reserve Chaplain.
Over the next few days, the stinging turned into severe back pain. When I could get in to see the doctor, she put me on complete bed rest and heavy doses of Tylenol and aspirin. I had torn “every muscle on the right side of my back from my waist to upper back.” After several months of bed rest, the doctor allowed me to return to work for an hour a day, gradually increasing the time. She also prescribed extremely mild exercises. It took a year to return to 95% of pre-injury normal. During that year, Joe and our sons took care of me as well as doing all the housework. Joe also continued studying for his master’s.
The medical community could not understand the reason for the injury, although they knew my job caused it. “Just one of those things!”, they said. Then—oh, no—the exact same injury occurred again one year later. And even though I stopped the activity sooner and followed the same treatment, the outcome was significantly different. Maybe 50% recovery.
Joe graduated at the end of that year. We moved to northeast Washington where he began his career. Our sons graduated high school there and went on to college. They are now both professional men with families of their own. Sometimes, I wonder if the hardships of growing up with a mom with serious limitations actually strengthened them.
Several years after Joe’s graduation, I came across information about post-polio syndrome, also known as PPS (1). It sounded like a reasonable diagnosis as I had had polio (from which I “fully” recovered) at age two. Doctors disagreed on the diagnosis of PPS. One specialist even said I didn’t have it, as he didn’t believe there was any such thing! Anyway, the symptoms never completely fit although it did explain the fatigability. It never quite explained why my back spasmed so easily. As the weakness and fatigability increased, my life became more limited and my family had to take up the slack. Friends helped us at times.
Seventeen more years passed before we found the next piece of the puzzle: cervical and writer’s dystonia (2). Over the years, my right hand developed odd movements and became more difficult to control. My neck and shoulders got tight, causing pain at times. The doctor began Botox injections in my neck and shoulders, which gave me great relief. Botox, which paralyzes muscles, is only temporary and must be repeated every three months. Yuck! We left the hand alone since it wasn’t that bad. The medication we tried didn’t work.
The Last Major Diagnosis
Another four years passed, and Sjogren’s (3) entered my life. It usually only causes dryness issues, but once it goes beyond those glands it can affect anything in the body. Of course, it triggered other neurological problems–what else! It also caused Raynaud’s (4) and gastroparesis (5).
Somewhere along the line, dysphagia (6) and breathing muscle problems evolved. Polio slightly weakened my breathing muscles, but my lungs remain unaffected. Either polio, dystonia, or Sjogren’s caused the dysphagia.
A few years ago, the neurologist added the diagnosis of generalized dystonia, which means the dystonia is genetic. That answered the question about all the unusual, but not serious, oddities I experienced as far back as young childhood. I consider myself very blessed because most children born with generalized dystonia have a very severe form.
No one thing by itself would be disabling, but everything together is quite difficult to live with. Individually. each condition could be worked around but the combination makes for unique problems, some of which remain undiagnosed.
(1) “Post-polio syndrome is a new condition that affects the survivors of polio decades after the acute illness of poliomyelitis. The major symptoms are pain, fatigue and weakness. New weakness is considered the hallmark of post-polio syndrome. Less commonly, survivors may have new sleep/breathing/swallowing problems and some survivors may also experience muscle atrophy or muscle wasting. http://www.post-polio.org/edu/pps.html
(2) Dystonia is a disorder that causes muscles in the body to contract and spasm involuntarily. Individuals who are affected by dystonia cannot control or predict the movement of their bodies. Symptoms of dystonia do not appear the same in every patient. Dystonia may affect a specific part of the body or many parts simultaneously. https://www.dystonia-foundation.org/
(3) Sjogren’s syndrome is a systemic autoimmune disease which primarily presents with dryness of mouth, eyes, and skin. It can cause profound fatigue, and can affect any organ in the body: the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system. It often occurs with rheumatoid arthritis, lupus, or scleroderma. Sjogren’s increases the risk of lymphoma. Symptoms can be mild or debilitating; they can remain steady, worsen, or occasionally get better. https://www.sjogrens.org/home/about-sjogrens
(4) Raynaud’s is a vascular disease causing cold toes and fingers due to spasms of blood vessels. It may also affect lips, nose, or ears, but this is rare.
(5) Gastroparesis involves weakness of the muscles of the stomach, or the nerves controlling those muscles. It causes mild to severe digestive problems. Another name for it is slow stomach.
(6) Dysphagia, difficulty or discomfort in swallowing, can be as mild as feeling a lump in throat or as serious as the inability to swallow. Aspirating food is possible. Neurological disorders, including stroke, are a common cause.
About the Author
Carole Griffitts has lived with invisible disabilities for forty years.
She and her husband/caregiver live in northeast Washington state. They love nature, and she uses her scooter to sometimes accompany him on his hikes. She uses her laptop, called Expanded World, to connect with others. Her website, for and about people living with invisible disabilities, is www.navigatingthestorms.com.
In Natural Treatments for Gastroparesis: Part One, we discussed what gastroparesis (GP) is and ways in which people with gastroparesis can modify their diet and their medications to help improve symptoms. This article will cover natural substances that can further aid the GP patient. Also included is a discussion about a few tactics to stimulate and promote healing in the vagus nerve, which is believed to be responsible for causing gastroparesis.
Gastroparesis and Supplementation
There are a variety of supplements and herbs that can benefit a person with gastroparesis. I have broken them down by the symptoms they are best at addressing and note crossovers where applicable.
Dysbiosis, Constipation and Diarrhea
People with gastroparesis usually suffer from a variety of GI concerns due to low motility. Our gut flora is often out of balance and we often have IBS or SBBO (Small Bowel Bacterial Overgrowth). The use of probiotics with prebiotics can often help with this, along with the consumption of fermented foods like yogurt, kombucha or kim chi, if tolerated. Probiotics will help with these symptoms and come with a variety of other benefits, such as supporting the immune system, and curbing symptoms like heart burn, gas, bloating, nausea, constipation, and diarrhea.
While most of us cannot handle insoluble fiber, there is one company making a low FODMAP fiber supplement with which I’ve had great success, Pronourish Fiber. Designed specifically for people with gastrointestinal disorders, it can help with both constipation and diarrhea, keeping your system more regular overall and bulking your stool so it’s much more comfortable to pass.
Heart Burn and Reflux
If GERD is an issue, it’s tempting to use a proton pump-inhibitor, but these should really be avoided, given that they decrease stomach acid and motility. An H2 antacid like Zantac (ranitidine) may be a better choice, though they are also known to slow motility. For whatever reason, I have better motility with the latter than the former, but this is just my personal experience. If you find both a proton pump inhibitor and H2 antacids cause your system to slow, there are a variety of natural remedies for treatment, as well.
Stinging Nettle Tea can provide relief of both heart burn and nausea. When taken daily, I have found it’s quite effective at keeping my GERD at bay. It is safe to use daily for most, but there are a few precautions with this herb, so be certain to read about it to ensure it’s not contraindicated for use with any of your conditions or medications.
A ½ teaspoon baking soda dissolved in 4 ounces of water often brings relief, as does soda or seltzer water. However, baking soda is a remedy that should only be used occasionally as a spot treatment. It shouldn’t be taken when the stomach is uncomfortably full, making it perhaps not the best choice for gastroparesis. It may still come in handy at times, as we all know we can get heart burn whether our stomachs are full, empty, or somewhere in between.
There are other things which can also help reduce heart burn by treating the whole digestive tract and absorption issues, much like probiotics. These are covered below.
Malnutrition and Malabsorption
Since absorption is often an issue for people with GP and we are at high risk of malnutrition, it is often necessary to supplement with vitamins. Since the processing of solids is hardest of all, it’s best to take either liquid or methylated vitamins that are easier for our bodies to process. Liquid vitamins can be consumed normally, while methylated vitamins are designed so that they are absorbed by the skin. While multivitamins get a bad rap, for us, they are essential. Usually additional amounts of other key nutrients are also necessary.
The most important vitamins to replenish are usually Vitamin D, Vitamin C (for immune health), Magnesium, B vitamins (we tend to be particularly deficient in B12, but B2 and B6 are very important for migraine sufferers, and all B vitamins help provide added energy), and iron. A doctor can test your levels and tell you for certain where you’re deficient and whether or not you’re taking enough once you begin supplementation.
To aid absorption and reduce inflammation in the GI tract, consuming an aloe vera juice or gel drink is an excellent way to go. Aloe can increase the absorption of nutrients by as much as 300% and decrease inflammation, making for a calmer, more regular digestive tract overall.
Digestive enzymes are being touted as another way to help food break down and get additional absorption of nutrients from your food, but I’m somewhat on the fence about whether or not they’re appropriate and haven’t taken them personally. This article from diet-vs-disease, a trusted site I rely on for my FODMAP diet information, seems pretty wary of it. But other health bloggers and advocates, including some doctors, are in favor of using digestive enzymes to increase stomach acid production in people with gastrointestinal disorders like GP.
Before your body can absorb nutrition from food, it must be broken down. Consuming digestive enzymes prior to a meal could potentially assist in the process and reduce symptoms like reflux, gas, and bloating. It makes sense in theory, but there are few tests to back them up. If you do decide to supplement digestive enzymes, it’s important that you choose a digestive enzyme without any fillers that may be hard on your stomach. According to Gastroparesis Natural Treatment, one such enzyme is Betaine HCI, which increases stomach acid. Choosing a Betaine supplement with pepsin is best, as most people with GP are low in both.
Increasing Motility and Curbing Nausea
One very unpleasant side effect of low motility is the nausea that comes along with it when gastric emptying slows. There are a number of herbs that can help. Not surprisingly, many of the herbs which combat nausea also increase gastric emptying.
Peppermint is an excellent antiemetic that also improves motility. I find it works best with a little sugar and usually use Red Bird peppermint puffs or Altoids, as these mints contain pure peppermint oil and sugar both without too many other ingredients. One mint usually gets me 20-30 minutes of nausea relief. You can also chew directly on mint leaf, drink mint tea or get mint oil. If you go this route, you should consume it with food, as it can cause heart burn. This is why I usually use mints. With their accompanying sugar, I don’t have to try to eat anything on top of it to avoid heart burn.
Stinging Nettle Tea is great at relieving nausea and acts as a mild anti-inflammatory. Since it also works well for heart burn and provides some mild pain relief, it’s a good option for daily use provided there are no contraindications for its use.
Ginger is another herb which works well for nausea. It’s also been proven to promote gastric emptying and motility. In addition to these great benefits, it works well on muscle pain when taken regularly and has anti-inflammatory properties that are helpful in arthritis. It’s even been shown in a small study to lower blood sugar. It’s best if eaten with meals or drank as a tea 2-3 times a day.
Triphala, while not known to curb nausea, has been proven in studies to help with constipation and promote appetite. It actually performed better than Reglan (metoclopramide) for gastric emptying. I have not taken this supplement personally, but I plan to try it.
Stimulating the Vagus Nerve to Improve GP
The vagus nerve is a fibrous network that runs from your brain throughout the body’s core. It is part of the parasympathetic nervous system.
In the brain, the vagus helps control anxiety and depression.
In the gut, it increases stomach acidity, digestive juices, and gut flow.
In the heart, it controls heart rate variability, heart rate, and blood pressure.
In the liver and pancreas, it helps controls glucose store and balance
In the gallbladder, it helps release bile, which can help you get rid of toxins and break down fat.
It isn’t hard to see why gastroparesis tends to run concurrently with a variety of other health conditions. There are many ways to help stimulate the vagus nerve to improve function. The goal is to relieve stress and encourage relaxation. Therefore things like massage, meditation, yoga and deep, controlled breathing exercises are all high on the list of things recommended to stimulate the vagus nerve. Even singing, chanting, and laughing can have a positive effect on vagal tone. The vibration of the vocal chords helps to stimulate our organs and the vagus nerve. So go ahead, sing in the shower, laugh with friends, watch those comedies. It’s good medicine!
Another great technique for stimulating the vagus nerve is to shut off the hot water mid-shower, dousing yourself with cold water and shocking the system. Studies show that when your body adjusts to cold, your fight or flight (sympathetic) system declines and your rest and digest (parasympathetic) system increases – and this is all mediated by the vagus nerve. Even drinking cold water or splashing some on your face may be enough to stimulate the vagus nerve. However, I find the cold shower technique to be more effective and found some improvement to my heat intolerance and other symptoms of dysautonomia.
Probiotics are also good for the vagus nerve. Studies show that animals supplemented with L. rhamnosus experienced various positive changes in GABA (calming) receptors that were mediated by the vagus nerve.
In several small studies, acupuncture has shown that it may provide benefit in gastroparesis. One short-term placebo-controlled randomized study that included 19 patients with diabetic gastroparesis suggested improvement in overall symptoms including fullness and bloating (IFFGD). I haven’t tried acupuncture personally, but it makes sense that if massage works to stimulate the vagus nerve, so too would acupuncture.
Things Every Person with GP Should Consider
In addition to working with your pharmacist to clean up your medication list, you should also consult with a dietician. They can help you to manage the FODMAP diet and any other dietary restrictions you may have and help you decide what vitamins and minerals to supplement. It is possible to do these things on your own and there are plenty of resources out there to be had, but these things rarely replace the knowledge of a trained professional. A naturopathic doctor or pharmacist could also help you decide which supplements are right for you and might even be able to help suggest other supplements not included here.
It’s also important to keep in mind that while medications can sometimes offer great relief, they can also be unreliable and have unforeseen consequences. Doctors are in the business of pills and procedures and sometimes these things are both necessary and helpful, but it can be used in cooperation with naturopathic medicine and every day common sense solutions. Often, using a combination of the two seemingly opposed methods of healing yields the most beneficial outcomes for patients.
Finally, the things on this list I consider most essential to gastroparesis care are reviewing your medications, adapting the diet, taking probiotics and a low FODMAP fiber supplement, increasing motility, and stimulating the vagus nerve. Everything else is dependent on your specific symptoms and can help improve the overall quality of life for people who have gastroparesis.
About the Author:
Capricious Lestrange is a former educator who loves to write. When brain fog prevented her from writing the fiction and poetry she loves, she turned to blogging and now writes about her life, her health conditions and what she does to keep them in check. She enjoys spending time with her loving husband, her adorable Russian Blue kitty and dabbling in the visual arts when she doesn’t have her nose stuck in a book. Capricious has EDS, MCAS, POTS, CPTSD, and gastroparesis.
August is Gastroparesis Awareness Month. Gastroparesis is a gastrointestinal disorder that affects the stomach’s ability to digest and pass food.
I want to discuss some of the many ways one can improve gut motility naturally. While there is plenty out there about medical interventions for gastroparesis, there’s not a great deal available about how to treat the symptoms of gastroparesis using naturopathic or holistic modalities. Despite the lack of copious information, there are a variety of simple things a person can do to improve motility and get relief from mild to moderate symptoms, many of which I employ myself.
In this two part series, we’ll first discuss how changes in diet and medications can help. The second article will cover supplements that promote motility and mediate other symptoms, along with ways to stimulate the vagus nerve for improved gastric flow.
There are many medications that can be prescribed for gastroparesis. A lot come with unpleasant side effects and are only meant to be used short term, while others are only effective for a short period of time. There are a number of easy, natural remedies that can help, some of which you probably already have on hand. Diet and exercise also play an important role in managing the condition. Most people with gastroparesis lose the ability to digest certain kinds of foods which should be avoided. Additionally, avoiding things like smoking and alcohol can improve slow gastric emptying and gut motility.
What is Gastroparesis?
Gastroparesis (GP) is a condition that affects the normal movement of muscles in your stomach, causing delayed gastric emptying. GP is believed to be caused by damage to the nerve that controls the stomach’s muscles, the vagus nerve. In some patients, damage to the vagus nerve has been documented.
In its early stages, GP can also be referred to as dyspepsia. Some people with gastroparesis experience few symptoms, while others are plagued by severe symptoms. Some researchers have proposed a classification system for GP, ranging from mild, or grade 1, to severe, or grade 3.
This dysfunction can be caused by a variety of factors, such as neuropathy, post-surgical complications, medications that cause delayed gastric emptying such as opioids, viral gastroenteritis, nervous system disorders (e.g., Parkinson’s), collagen disorders (e.g., EDS/HSD), connective tissue diseases (e.g., RA, lupus), metabolic disorders (e.g., diabetes and hypothyroidism), anorexia nervosa and bulimia, chronic liver or renal failure, and chronic pancreatitis. Gastroparesis may also be induced by medications, associated with total parenteral nutrition, or related to bone marrow and other organ transplants. Additional causes include paraneoplastic syndrome, mitochondrial disorders, visceral neuropathies (e.g., Guillain-Barre syndrome), and visceral myopathies (e.g., systemic scleroderma).
“Reports from one tertiary referral center found that out of their 146 patients with gastroparesis: 36% were idiopathic (unknown causes), 29% were diabetic, 13% were post-surgical, 7.5% had Parkinson’s disease and 4.8% had collagen diseases (NORD).”
While there is no cure for gastroparesis, some recovery of function and improvement of symptoms is sometimes possible after successful treatment. While I have to watch what I eat carefully and treat my symptoms regularly, I have improved my motility significantly using the strategies outlined below.
Gastroparesis and Medications
One of the simplest ways to improve gut motility is to eliminate or replace any medications you are taking which slow motility or have an anticholinergic effect, if at all possible. The best way to accomplish this is to consult with your pharmacist about the medications you are currently taking and see if they can recommend alternatives for any that are suspect. If you choose, you can often find natural supplements that are just as effective, but don’t have an anticholinergic effect. Popular medications that slow digestion include most gastrointestinal agents including proton pump inhibitors and antacids, antiemetics (e.g., promethazine), and anti-diarrheals; tricyclic antidepressants and other psych meds, opioids, some heart medications, and more (see a full list here).
Gastroparesis and Diet
The best place to start when attempting to improve motility is a modified diet. Modifying the diet to eliminate anything the digestive system no longer processes is essential to helping your stomach run smoothly again.
The Problem with Carbohydrates
Often people with GP lose the ability to process certain carbohydrates. The FODMAP diet, designed by researchers at Monash University, was created specifically for this reason. It is used for people with a variety of gastric disorders. The FODMAP diet is an elimination diet that helps you test various carbohydrates to see how your body reacts to them after a period of going without them. If you still react poorly to them after going without for the specified time period, then you need to eliminate them from your diet.
The lactose carbohydrate found in dairy is usually particularly hard on people with GP. But often they have difficulty processing a variety of carbohydrates, such as fructans (i.e., onion and garlic), polyols (i.e., stone fruits, berries, and artificial sweeteners such as xylitol and sorbitol) and other high fiber fruits, vegetables, grains, and legumes.
It’s difficult to glean just what is causing your stomach upset when there may be multiple culprits. The FODMAP diet may seem complicated, but in the end, it really simplifies things by putting into place a system of checks and balances where you test one kind of carbohydrate at a time. The diet can be very limited during the elimination and testing phases and can end up being quite limiting long term for people with gastroparesis. But the pay-offs in how you feel without the delayed gastric emptying, nausea, pain, bloating, gas, and pseudo-blockages are more than worth it.
Avoiding High-Fat Foods
People with gastroparesis often need to avoid high fat foods for the same reason. The doctor recommendations I’ve found is a total fat intake under 40 grams per day for gastroparesis patients (Arnold Wald, MD), but I find the kind of fat matters. For instance, I can eat high fat nuts with little problem, like peanuts and almonds, and seem to enjoy as much nut oil as I’d like. But I don’t process animal fats well and have had to cut out things like ribs, chuck roasts, and even burgers sometimes give me a bit of trouble.
Those Vexing Vegetables!
You may find that you can also no longer process a lot of raw vegetables or undercooked meats, like steak. Sadly, while these usually offer more nutritional value, they are harder for the stomach to process and may slow digestion. Instead, I tend to cook most of my meat in a slow cooker or roast until it’s fall apart tender. This helps me to digest it more easily. Using leaner cut roasts, such as bottom or top round instead of the traditional fatty chuck roast, keeps it lean enough that I avoid upset from fats.
With fresh vegetables, you will generally find the higher the insoluble fiber content, the harder it is to process them, raw or cooked. There are handy cheat sheets to help if you utilize the FODMAP diet.
No matter what you eat, you should always be paying attention to how it makes you feel. Your body will tell you when something is wrong. You just need to learn how to listen to these queues and trust them. I found utilizing the FODMAP diet to be very helpful in this arena. When I first went on it, my stomach was a raging dumpster fire. Eating anything made me feel bad 100% of the time. It wasn’t until I gave my stomach a rest from all the things it could no longer process that these signals became crystal clear and I could tell how my body reacted to things individually.
The Timing of Eating
How often you eat also matters. Doctors generally recommend several small meals a day, but some people with GP find it’s actually better to eat only once or twice a day, giving their digestive systems plenty of time to process food and rest in between. Personally, I eat a meal in the morning and the rest of my calories in the evening, letting my stomach signal when it’s time. I believe it works because these short periods of fasting give my body plenty of time to digest and reset and I have fewer problems with fluctuations in blood sugar and other symptoms.
I don’t just eat and lay down at night, though. I eat and then do the dishes and pick up around the house, making sure I get some activity in, as it’s recommended for people with GP. Often after my morning meal is when I exercise. However, I prefer to allow my food to digest for 30-45 minutes first to avoid stomach upset if I feel particularly full or nauseous.
Some people swear by smoothies for gastroparesis, as solid foods can become more difficult to process. However: I often question how they are being made. If you process carbohydrates poorly and need to consume less insoluble fiber, I would take great care in choosing ingredients and also question whether or not the raw fruits and vegetables are more likely to cause stomach upset. At this stage, I find cooked, soft solid foods work great for me, but it depends on what grade of gastroparesis you have and what you’re still able to process.
Listen to Your Body!
I can’t caution enough how important it is to listen to your body first. There is no “one size fits all” model for the GP patient. If you are giving your body food it’s unable to process, no other interventions will be as effective or helpful.
Cleaning up medications and modifying your diet to suit what your gastroparesis tummy can still process is paramount to gaining control of the condition. However, there is still work to be done to achieve the best outcomes possible for people with gastroparesis. People with GP often suffer from malnutrition as a result of poor absorption, for example, and need to learn the best ways to supplement their nutrition. Additionally, there are a number of naturally occurring agents that can increase motility, curb nausea, diarrhea, constipation, heart burn and other undesirable symptoms. Learn about them all in Natural Treatments for Gastroparesis: Part Two.
About the Author:
Capricious Lestrange is a former educator who loves to write. When brain fog prevented her from writing the fiction and poetry she loves, she turned to blogging and now writes about her life, her health conditions and what she does to keep them in check. She enjoys spending time with her loving husband, her adorable Russian Blue kitty and dabbling in the visual arts when she doesn’t have her nose stuck in a book. Capricious has EDS, MCAS, POTS, CPTSD, and gastroparesis.
Gastroparesis is a stomach related disease in which the stomach muscles of the patients gets affected which results in poor churning and grinding of food. The digestion is not proper and the food doesn’t get grinded to the appropriate small particles, required to move to the small intestine. This abnormality mainly occurs due to the damage of the vagus nerve. The vagus nerve is essentially responsible for the functionality of the digestive system.
The food in the stomach usually gets digested with rhythmic contractions of the stomach muscles. Then the collective action of the acids and muscles make it possible to churn it to the size which can then pass to the intestines. In this disease, the emptying of solid food is very slow thus causing major issues.
This condition is subdivided into three main types:
Post surgery gastroparesis
The main causes of this abnormality are unknown; however, these are the few basic causes that usually cause gastroparesis:
Uncontrolled diabetes is one of the causes of gastroparesis.
Patients suffering from Parkinson’s disease (tremors) can also be targeted.
Imbalance of various essential minerals of the human body like calcium, potassium, magnesium etc can also be a cause of this disorder.
People experiencing multiple sclerosis are also prone to this disease.
Serious injuries to the stomach and especially to the vagus nerve can be a cause for this abnormality.
Medications like various antidepressants and drugs can cause gastroparesis.
Two conditions namely, Scleroderma which is a disease of connective tissues and Amyloidosis which is the deposition of protein fiber in the organs and tissues can also cause this disease. Scleroderma causes damage to the muscles of the stomach.
Gastroparesis is also caused by pancreatitis which is the inflammation of pancreas. Thus reflexes of the nervous system play a role in triggering this condition with the abnormal functioning of the nervous signals.
Sometimes, it has also been observed that gastroparesis does not occur due to the acute weak functioning of the stomach muscles. It can also be caused due to the malfunctioning of the associated organs like intestines, colon or esophagus.
Following are the symptoms of gastroparesis:
One of the most observed symptoms of this disorder is nausea and vomiting of the food that is left undigested. Vomiting can also be caused without any food intake, simply because of the stomach fluids. The vomiting is intensely difficult as it contains visible pieces of food due to undigested food.
The patients also suffer from severe abdominal pains when they are enduring this disease. The cause of the pain however, remains unclear still.
Some people also complain of feeling full too quickly when they have in actual, eaten nothing much.
The sufferers also endure bloating which can be with abdominal distension or without it.
In some cases, it has been seen that people lose weight very quickly and this is usually caused due to early satiety.
GERD or also known as Gastroesophageal reflux disease, which is the heartburn in easy words, is not very common though, but in a few cases, it is also a symptom of gastroparesis.
Many people who suffer from this disorder also have issues in controlling blood sugar levels.
Complications of the disease
These are some of the frequently occurring complications in this disease:
The food stays within the stomach for a long time which can become fermented. This causes the growth of bacteria.
Sometimes, the food that keeps sitting in the stomach turns into a hardened bezoar. This material causes obstruction in the stomach and cannot be passed onto the intestine.
Due to the increase in the blood sugar level, people suffering from diabetes as well as gastroparesis have issues in controlling the sugar level. When the food passes into the intestine, the sugar cannot be regulated.
For thorough diagnosis of the disease, doctors have a detailed checkup. They keep a check on the symptoms and take notice of the patient’s complete medical history. The patients undergo a series of blood tests and physical examination of the body. Their blood sugar is checked and on the basis of this information, the diagnosis is presented. Following are the few ways in which gastroparesis is diagnosed:
Barium X-Rays: Barium is a liquid that the patients drinks before the X-Ray. It helps in the indication of the internal passage like the esophagus and it shows the areas where the problem lies. This X-Ray is useful in observing stomach, small intestine and the esophagus.
Gastric Manometry: This is a test in which a thin tube is inserted through the mouth of the patient into the stomach. It helps in measuring the muscular and electrical activity of the stomach. It helps in calculating the rate of digestion of the patient.
Ultrasound: Ultrasounds are the best imaging technique which gives real tie images of the body through sound waves. It can be used for thorough investigation of the condition and to eliminate the other possibilities.
Endoscopy: Endoscopy is yet another diagnosis technique for gastroparesis. It also involves the insertion of a thin tube but into the esophagus. This can assist in observing the stomach lining.
One thing to remember about gastroparesis is that it is a chronic condition which will last for the whole life, unfortunately. There are different medications for this disease however, there is not absolute cure. The medications can be helpful in controlling gastroparesis to some extent.
Reglan: This medicine is taken before the meal. It causes the contraction of the stomach muscles which will move the food onward the small intestine. It also helps in reducing the chances of vomiting or nausea. The side effects are anxiety, diarrhea, drowsiness and sometimes severe neurological disorders.
Erythromycin: It is an antibiotic which targets the stomach contraction. It assists in moving of the food as well. the side effects include the formation of bacteria due to the exposure of antibiotic and diarrhea.
Antiemetics: This medicine is essentially used to control nausea.
I was able to do well with most of these until the gastroparesis and fibromyalgia came on strong about 3 years ago. I had to give up my career as an emergency room nurse. My life went from high speed to no speed over night.
Until last March I spent most of my time depressed and unfulfilled. About 8 months after my diagnosis and having a stimulator put in I got really sick again and landed in the hospital. I was estranged from my children, my mother and I struggle to get along and my husband wasn’t adjusting to the life change either. I lost my hope and took a bottle of Zofran and benadryl…..I had no fight left in me… Thankfully I’m still here and I have a husband willing to fight for me.
The last 3 years were rough, due to losing my income we lost our house and were homeless for a while. I started to lose hope again. Then my dad sat down with me and we had a very long difficult talk. I wanted to swim in my pain and self pity. But I realized that’s not how I want to live. So I started changing my outlook. I find the positive in every day. Yes I’m still sick, I still hurt and I still get frustrated, but I’m refusing to let my health define me. I am more than my diagnosis. While I can’t get out of the house most days, it doesn’t mean I’m not a contributing member of society. I’m not ever going to give up again!!
Becoming ill is a major life changing event. I had to take the time to mourn all that I lost. By going through the grief process it helped to come out stronger. The Spoonies For Life support group has helped me immensely. I recommend to everyone who’s become a spoonie to join. I’ve learned to find the blessings and happiness in my life. I embrace and love my body for what it is and am thankful for everyday I’m given to keep trying to fight!!
Hello! My name is Amanda (or Mandy, I go by either one), I’m 24, and I’m a “spoonie for life.” I was diagnosed with Gastroparesis in 2010, and it was decently well managed (only 1-2 ER visits a year) until early 2015. At that point, my overall health took a big turn for the worse, I was in and out of the hopsital, and my health was an absolute wreck. This year has been filled with new specialists, many hospitalizations, countless tests, and new diagnoses. I have a decent list, but my “main ones” are Gastroparesis, Fibromyalgia, Celiac Disease, and Dysautonomia… and there’s an unfortunate possibility there’s still something going undiagnosed.
Every day is a struggle— a struggle to eat, to not lose my balance when I stand up, to walk up the stairs without taking a break, to push through the pain and the awful fatigue… but I’m a fighter!
Despite all this, I still work, in fact I own my own business! I’m self-employed as a horseback riding instructor. When my health allows it, I’m also a horse trainer. But I can teach while sitting down or while having a bad health day, so I try to make teaching my focus. I work 6 days a week, just not very many hours at a time due to fatigue.
My doctors have thankfully found a good mix of medications for me and I’ve been staying out of the hospital lately. Now that I’m stabilizing, I hope to start volunteering at a therapeutic riding facility this upcoming spring. I eventually want to become a therapeutic riding instructor, or perhaps even get into hippotherapy. I strongly believe in the healing and strengthening power of horses. The horses I work with keep me sane and focused through this crazy life I’m living 🙂