Intuition is a beautiful thing. It’s that faint feeling that what you feel or hear may be more than what you think is normal, or what someone tells you it is. It’s that little voice that tells you that something is not what it seems. Intuition is knowing yourself better than anyone else knows you to the point that what may sound reasonable enough when told to you, still has you thinking otherwise. But you move forward, go on, and you live your life accordingly.
There’s a misconception that questioning what your told, or not “buying it” can put you in a class of people doctors and others like to call hypochondriacs. It’s then you may just shut up, ignore your intuition and messages your body sends you, and move forward, go on, and live your life accordingly again.
Intuition is always right in at least two important ways;
It is always in response to something.
It always has your best interest at heart. Gavin de Becker
That is what I have done for many years, at least since my early 20’s. It’s wayyyyy back then when I’d lean down to get a drink from a water fountain and end up standing there trying to make the water go down. Most of the time, I would just calmly walk to the restroom and spit it out. Because it just wouldn’t go down, and it hurt in my chest. Not bad, but enough to make me think to myself, “well this can’t be right…” so I would tell my mom, and she would say “we need to get that checked,” and a doctor’s appointment would be made. I didn’t like doctor appointments, only because they reminded me of the only times I saw a doctor was when I broke my arm in 2nd grade PE, or I broke my collarbone in 6th grade recess playing football with the boys, or when I broke my tailbone numerous times from tripping while jumping rope, to falling on the balance beam in gymnastics. A doctor’s visit surely meant something bad had happened and I was going to either get a cast or have x-rays while the technician pulled, twisted, and manipulated whatever was broken in such a way to get a good x-ray, which was always painful. Maybe it was the subconscious memory of the auto accident I was in when I was 2 years old where I was trapped under the truck, 7 skull fractures and weeks in an ICU, my parents told if I survived I may be what they used to call “a vegetable.” But miraculously I survived after surgery to relieve the pressure and went on to not be a vegetable, but rather an A student who was clumsy. My parents didn’t tell me about this accident or my brain injury because the doctor told them at the time it was best not to so that I wouldn’t be afraid to do things in life that might hurt my head. Yes, sounds silly but that is what mom told me when I learned myself about the injury in 6th grade while sneaking a peak at my health records during PE health checkup. I read all about a traumatic brain injury when two years old. It didn’t upset me at all, I was intrigued by it, and asked mom when I got home. She became near hysterical that I’d learned about it and while crying told me the story. I asked why is it such a big deal? I’m fine! She agreed, stopped crying, told me she was sorry and yes, I was fine and had no lingering problems from the injury because children’s brains heal much better than adults. All I can slightly remember is I had to wear a football helmet (San Diego Chargers). Why? Because they didn’t have seizure helmets back then. I had to wear a kid’s football helmet for a year, with my little dress on, I remember that helmet and just thought I must have loved football when I was little. The main though here was, I didn’t like hospitals, doctors, or San Diego Chargers. I now know why.
They did a good job of keeping this from me because I had no intuition that something may have happened to me as a child when I was older and had migraines. Not once was I told that maybe they were due to a head injury. I just assumed hormones and would lay in a dark room. Fortunately I no longer have them.
Back to this swallowing water and intuition thing. Through the years this problem persisted. Slowly getting worse, with food getting “stuck” or me having to take small sips or bites and just wait for it to go down. It wouldn’t go down though. Every few years I would make a doctor’s appointment and go in to explain this phenomenon. Each time the doctor would tell me it’s nothing, it’s normal, just take smaller bites and smaller sips. I’d leave the appointment mad I’d just spent money hearing something I’d already been told but my intuition had me thinking I really needed to have it checked. No one else I knew had this problem, and those I told would just shrug and say I don’t know, never had it.
It wasn’t until much later in my life that this problem had escalated to the point that I wouldn’t eat sometimes because I just couldn’t handle the pain of those times the food would get stuck, it wouldn’t budge. It didn’t happen every time, but enough that it became somewhat of a funny issue amongst my family and friends. How I would take a sip, then hit my chest, hold one finger up and try to say, “give me minute” with a mouth full of water and we’d all wait until I’d run to the bathroom and spit it out. It was so second nature to me to do this but my friends and family thought it VERY odd.
It was “odd” enough that the fact I’d leave the dinner table, go into the bathroom and shut the door, then come back out and excuse myself had my dear late mother telling my dad and sisters she thought I had bulimia and was making myself throw up. I can honestly see why they thought that. I had lost a lot of weight and many times I’d not eat dinner. Because I’m the early stages, this problem didn’t happen with every meal, but enough that others would think I had an eating disorder. I did…. but it wasn’t anorexia or bulimia.
During this time I was losing weight. A lot of weight. I had several “attacks” where the pain in between my breast bone was so severe I’d be taken to the hospital, then admitted for possible pancreatitis or unknown abdominal pain. Actually, one time I really did have pancreatitis because the lipase test came back severely high and the scans showed a pancreas about to burst. So, my swallowing problem got lumped together as a pancreas issue. No science or explanation behind it, just told, when the pain hit it is probably your pancreas.
But I just didn’t think that was it. Still I was seeking an answer from doctors about the swallowing problem and being told nothing is wrong there, its your pancreas now. I would keep mentioning it to the point where doctors and others would think I’m being a bit of a hypochondriac. Just believe what they told you about your pancreas and let it go! Are you “stressed?” When this happens, they’d asked. Yes, I was stressed because in my mind I thought there is something blocking my fluids and solids from going down and I bet it’s a TUMOR. Why else?!
I did let it go but the problem got worse and worse. My intuition turned to an all out belief that something is wrong right HERE (me pointing to the area where my esophagus meets my stomach). The doctors would humor me by prescribing heartburn medicine, or chalky liquids to drink when I felt the pain only to have the heartburn medicine and chalky drink get stuck along with the water I drank to take it. It didn’t help, only added to the problem.
When you go to a doctor or are in the hospital, they always schedule you for a two or six week follow-up. I went to those follow-ups and would tell them, I’m no better, no I do not have heartburn, I’ve lost more weight, and the attacks are getting more frequent. Each time from then on, I was told many different things, like changing my diet, journal the foods I’m eating to identify which was causing me “discomfort.” I couldn’t get it through to anyone that it was a swallowing then getting stuck then bad pain then throw it up problem. It wasn’t heartburn. It felt like I’d eaten an elephant and now it was passing through trying to push into my stomach. I would have visions of snakes that eat big rodents and the outline of the rodent they’d just eaten was halfway down and I’d wonder how in the heck do they tolerate that pain? Every time in the hospital, when asked by a doctor what it felt like, I would use Sigorney Weaver’s character in Alien, when the alien comes out of here stomach or wherever. I never saw the movie, just saw that part. That there was enormous pressure right HERE and now it’s extreme pain and vomiting. Yep, must be your pancreas.
I thought about videoing my attacks but that’s hard to capture, taking a sip and then staring into the camera and I hurt and it doesn’t go down past my sternum, then spitting water out. That video doesn’t show anything really. So, that wasn’t an option.
With each new doctor run in, my intuition turned to “your missing something and I don’t have an x-ray machine at home to look so your hypothesis that I’m stressed therefore I’m having nervous gut problems” is wrong. I wish it was right, really I do, but I’m not liking your dismissive attitude and your suggestion I make an appointment with a therapist to discuss what deep seeded trauma is causing my nervous gut issue. So, I shut up and decided not to mention it again, just deal with it because I didn’t want to be labeled a hypochondriac. No intervention was ever held but my family probably all figured I was indeed bulimic or anorexic and just didn’t want to hurt my feelings as long as I didn’t lose too much weight.
All this time, years of choking, begging doctors to check into why I can’t swallow, feeling like maybe it is all in my head, being at odds with family who felt I was a hypochondriac, that my problems were self induced and most likely because I liked sugar too much, since I ate a lot of it when I could. Now that suggestion is correct, sugar is bad and I did eat a lot when I could swallow which probably didn’t help matters. Thousands of dollars spent at doctors, therapists who would sooner or later tell me that I didn’t really need to keep coming unless I wanted to, that they saw no mental issues. All those tests coming back “normal” you are as healthy as a horse, giving my doubters even more reason to doubt me and view me as an attention craving, nervous stomach women.
All this I put up with and lived my life as the swallowing problem revved up to pain I’d never before experienced but had no one who would really help me. I’d been diagnosed with Lupus 7 years prior, so that was now the official diagnosis, “your lupus must be causing some kind of nervous stomach issue.” Until that one day in the city, when I had an “attack” after eating a real meal, that rivaled no other. Admitted to the hospital, I finally was assigned a GI Specialist. Specialists love to do procedures, thankfully, to take a “look see” at what might be happening. Since my pancreas was given the honor of being the cause I was scheduled for an EUS (Endoscopic Ultra Sound) to be performed by the God of EUS’s in my state. A GI Specialist who practically invented the EUS! He was to put me to sleep and using the endoscope go look around my pancreas to see why it was causing me problems. What he found was a very healthy pancreas but an esophagus that was closed off at the bottom, a diagnosis called Achalasia. Where the bottom of the esophagus is abnormal and closes off, not allowing food and liquid to pass through easily at first, and over time, not at all. Therefore severe pain ensues and food hangs out down there, fermenting and causing nausea until it either got through some how or I got sick and vomited. The doctor wrote on my pictures of my EUS the word “achalasia?” and I was told that I may have achalasia. But, after years of being told nothing was wrong, I blew it off and was just glad my pancreas was ok. I didn’t even ask what achalasia was, but it was written next to the endoscopic photo of a tiny, tiny hole which was the inside of my esophagus that should have been a large opening.
It would take two more stints in the hospital and a weight loss of down to 88 lbs to convince me that my intuition that something was wrong with my “swallower” later to be called my esophagus, was spot on. I was told, after several more endoscopies to make dang sure I guess, and other tests to measure the pressure in my esophagus to confirm achalasia, that this was a problem in the making for years. That me telling the specialists I have systemic lupus which has caused me other problems may be something to look into?
The fact that it wasn’t addressed and subsequently fixed had led to another diagnosis, Barrett’s Esophagus, a pre-cancerous situation where my esophagus has been fighting so long to do its job but couldn’t therefore between the fermented food sitting there, the acids hanging out there, the esophagus is pretty damaged. You mess with something inside your body too much, it seems to develop cancer. Fortunately I am told my Barrett’s is early, early and chances I get cancer of the esophagus are low, they are there, but I’ve time to have it address as well as the swallowing problem which by now it epic. However, when you’ve been fighting to get something looked into, then biopsies are taken and you get a phone call that the pathologist report is in and you now have a pre-cancerous condition but “don’t worry, it’s early” just doesn’t comfort me whatsoever. I’ve already had melanoma and surgeries to get all of it. My entire family has had or passed from cancer. That telling me I now have a pre-cancerous issue in my esophagus and it even has a name just adds to my concern that the longer I have to wait, the higher the chances I’ll be getting a different surgery of my esophagus, one called taking the esophagus out because you now have cancer of the esophagus. You can’t tell a person who is suffering from this Achalasia thing, who has Lupus SLE (the type of Lupus that attacks your organs), who has been diagnosed with so many other GI things that turned out to be wrong that they’ve now found an area in your esophagus called Barrett’s Esophagus not to worry.
There’s always that feeling of wanting to say, “I told you so” but to who I would say it I don’t know. This was years in the making. I can say I’m angry, I’m angry that years ago this was a minor fix and had it been found it would just be a small issue and once fixed I would have not had these health issues, I’m angry at the GI doctor who said there’s nothing he can do for me, that I have gastritis most likely and need to stay away from spicy food then told me I didn’t need a follow-up appointment. I’m angry that my attempts to follow my intuition and get help for something that I felt was wrong was taken as attention getting behavior most likely. I’m angry that achalasia itself has destroyed my teeth, my ability to have a nice dinner or even go out to eat which I haven’t done in years. I’m angry that, through no fault of their own, friends and family felt I was bulimic or had “issues” and didn’t understand when I couldn’t come over for dinner or I was too tired or in pain. Besides, who in the world has heard of Achalasia?! Only 1 in 100,000 people have it, a number I feel is probably higher because of people like me suffering through it and not being diagnosed correctly.
However, I am hopeful that the surgery that has only recently been developed to fix the esophagus by cutting the damaged muscles or sphincter at the bottom of the esophagus and wrapping part of the stomach around the bottom so that you can swallow will be done if I decide to go through with it. Which, I will.
Since all this, I have fought to get the surgery, not because I don’t qualify or I don’t have achalasia, but rather because surgeons wanted to try other procedures that ended up not working. It’s all in who ya get when you get that referral to a surgeon. Mine, well I’ll just say he had a different approach. But I’m free of that nightmare and soon to be back on track with the original specialists who first told me what I had and how he’d fix it.
Now, my intuition tells me that it all makes sense. It agrees. There is hope where there used to be doubt and judgments. There is a chance for a normal life of eating food and going out to eat. There is hope for health, no more pain, and a lot more years to make up for these last few that I fought constantly for someone to believe me and for someone to help me. As far as the damage achalasia has caused my body, I just have to accept it and deal with it systematically. I’m just glad that my mystery is solved and if the surgery doesn’t help, I’m going with my intuition that this is indeed the problem and I shall seek a different solution! I do not like nor do I agree with the notion that you shouldn’t speak of your health or be quiet if you are suffering, to get on Google and find that natural way to health because some things cannot be fixed naturally, I wish, but they can’t and I’m not ignorant enough to believe that not seeking help when your natural remedies don’t work is a bad thing. Many things I’ve gone through have been helped naturally though, by naturally I mean by not taking pharmaceuticals, but utilizing natural products. It’s just that nothing helped this, thus I continued seeking help wherever.
The moral of this story is, if you really feel they’ve got it wrong, and you are suffering, don’t give up. We know our bodies better than anyone. Doctors are wonderful, but there are still many illnesses and situations they have no idea how to treat or that they even exist. Unfortunately it wasn’t my perseverance and fighting attitude that finally found my problem, it was me almost wasting away to nothing that brought me to the brink of death by malnutrition and to the attention of a GI Specialist who could tell something wasn’t right. But the point is, it was figured out. I’m sure there will always be doubters but I don’t care. I know what I know and I’ve got to be positive so my intuition will continue to help me when things seem off.
UPDATE: it’s been awhile since my Achalasia diagnosis. I’ve yet to have surgery because there are many hoops to jump through for some of us. There is a lot to consider when diagnosed with something “rare.” You must make sure the doctors and surgeons specialize in this very specialized area of medicine. This isn’t an easy surgery. You must travel, more than likely? Out of state to the Universities or clinics who treat this exclusively. Then there is health insurance, I have excellent insurance but obviously not excellent enough to approve the two known surgeries for Achalasia. This is difficult because Achalasia’s symptom of a closed off esophagus and not being able to swallow is FIXABLE! They can fix it, I can wake up from surgery and be handed a cup of water and drink it right then! I’ve seen the videos of patients happily taking their first drink! To watch these but know my insurance has denied the surgery is heartbreaking. But, I’ve come this far, I’m honestly hopeful that somehow I will be approved. Having bake sales and car washes isn’t going to raise the $80,000 that this surgery costs. My go to statement is, “ahhhh I’ll figure it out” and I will. I’m just very, very grateful that there are specials who treat this and surgeries that FIX it. I’m grateful for all the people I’ve met online who’ve been on this same journey and are always readily available to share their stories and keep me positive. They’re the people who’ve pushed me to keep moving forward.
I still find humor in the fact that after 40 years of health, I would end up getting or having two illnesses with cool names like Lupus and Achalasia, although not a laughing matter, I chuckle at the thought of how these names would make excellent band names. “Flock of Seagulls” “Styx” “imagine Dragons” “NeedtoBreathe” now add to that list of bands, “Achalasia”! It would be an alternative music band I think.