Category Archives: autoimmune

What Does a Girl Got to do Around Here to Get Some Service?!

You know something is taking over your thoughts, your days, your life when your iPhone automatically types out Achalasia when you type an “a” and a “c.”

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88 lbs. and Not Happy

My iPhone’s predictive text ability, something I wasn’t aware of until the word, “Achalasia” would pop up allowing me to simply hit my space bar to insert the word that was easy enough to remember how to spell but how nice not to have to type each letter out! Well not really because it meant that Achalasia was a word I typed a lot. Therefore predictive text took over. A great tip for iPhone users but a harsh reality for me that this word showed up in my texts, notes, emails, searches so much it became “predictive,” she is going to type that word again. That word is a medical condition that is rare? Experts stating 1 in 100,000 sufferers? I believe that but why do I always have to have the odd or special problems? I’m special, no doubt, but this special? This isn’t something I want to be special for.

January 22, 2018 marked a year since being told, conclusively, I have Achalasia. Yet, the procedure which was explained to me as the treatment to relieve this horrible condition, the surgery the hospital GI specialists told me I would have still hasn’t happened. It isn’t because I don’t have insurance or they found I didn’t really have Achalasia. I definitely do, I’ve had all the follow-up diagnostic tests to confirm. My problem swallowing has gotten worse if that’s even possible but it is. Why? Why haven’t I had a procedure, any procedure from POEM to Heller? Well it’s because of a crazy year of mix-ups, falling through cracks, the passing of my dear, sweet sister who just wanted me to get fixed and not suffer, my missed appointments because I already had three of those endoscopies, are you sure I’m to have another? My life and my questioning has delayed my ultimate goal. But through this year I’ve become anxious, I had so many negative experiences with doctors that I had just had it. I wanted to give up and try to live with Achalasia. But you can’t, at least I cant. It’s too painful and in July another EDG (endoscopy) which was to be another surgeon’s look to make SURE I have Achalasia ended up with a balloon dilation that didn’t help and a call from the nurse several weeks later informing me the lab results were back from biopsies taken and I now have Barrett’s Esophagus. This Barrett’s thing I’m frankly too tired to explain but I will say that seven months prior I didn’t have it. Could waiting so long, and putting off the surgery be causing me more problems that are serious enough to get it done already! I don’t know anymore.

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So Thin, So Sick

To be fair, I’m at fault for canceling and bringing to a halt the follow up consultation with the surgeon who didn’t do a surgery to fix, but did repeat diagnostic endoscopies to look for himself. He was to be the surgeon who would do the Achalasia surgery but he didn’t have all the results from the previous EDG’s and EUS’s and barium swallows and CT scans, etc. So I was to learn that more procedures would be ordered so he would have the important information he needed to proceed.

However, my husband and I were about to experience his interrupting first consultation, leaving us feeling like we’d just experienced the ultimate “minimization of your symptoms. You’re not that sick and I know why” consult. It was a “no you’re not going to tell me what you are suffering from, I’m going to tell you and it’s going to be based upon questions I will ask and will answer too because what you are saying isn’t what I think you should be saying….. you aren’t throwing up, you have acid reflux. That extreme pain you’re feeling, the one when the liquid is trying to move through your esophagus but can’t and it feels just like your pancreatitis pain? That’s heart burn. ” By the way, after leaving I tried heart burn medication I purchased myself just in case that was it! But it wasn’t going to be that easy. That medication did nothing, absolutely nothing.

When I woke up from the EDG he did, I experienced another traumatic procedure and another rude, dismissal.

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I’m On My Way Up

So the fact I have just had it with the medical establishment is an understatement. But I have to say, there is always hope. I’ve drawn on that hope, remembering the three different specialists in agreement and informing me that finally, they’ve all found what I was suffering from. It’s their consultations I cling to. I believe them, and I cancelled further visits with the surgeon and have decided to wait and see the original GI Specialists who give me hope. Even though one of them rushed into my hospital room after a week’s stay of pain and worry to tell my husband and I, “I looked at the EDG and yes, my colleague was right, Achalasia! I have to run, I’m picking my wife up at the airport and I better not be late or I’ll hear about it!” We looked at each other and fortunately his phone was charged enough to Google Achalasia so we would know what it is.

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Bring on the Chubby Cheeks!

These doctors that found Achalasia need to see that I didn’t get that surgery. That I’m worse and quite frankly I’m afraid of doctors and hospitals because I’ve learned some hard lessons through all of this. That you can tell them your symptoms all you want but it just takes one doctor or nurse to doubt you and prolong your agony. But it takes just one doctor who sees you lying in a bed, wasting away, to take a moment to sit down and talk with you, not to you, but with you. Not rushed to speed through your symptoms, but to look you in the eye and you know they’re listening and not interrupting you. You relax and you finally tell your story, history, and your hopes. Having a doctor ask you, “what is the worst part of your sickness this visit? What do YOU think could be causing this?” Then they calmly go through a list of legitimate questions allowing me to answer and finally you hear it, the only thing you honestly want to hear, a true, sincere quest to help you, “well, we are going to do everything we can to identify what is causing this. Hopefully we will be able to and if we can’t I know of another specialty hospital that has more diagnostic tools we may refer you to.” Music to my ears, a feeling of relief like no other, instant tears of gratitude and sheer exhaustion once he leaves the room. I dropped my head down and sobbed, he heard me, he’s going to try and get to the bottom of this. Thank you Lord for this doctor.

This is the doctor I have an appointment to see. The specialist in a group of specialists that know their stuff and I trust. Saying I trust a doctor is a huge step forward for me. I honestly am afraid to go to a hospital now. I’m afraid of procedures. I’m just afraid of the very people who are trained to heal us. I’m not going through my entire story why, but it’s well founded fear and I now have an advocate with me at all appointments and hospital stays. I honestly could write a book about my experiences if I was a writer, but I’m not.

I have come a long way from my many years of health and active pursuits. Training, raising and competing with horses, working in film and television with animals to working for the judicial department in my state as a judicial assistant (law clerk, bailiff, judge’s assistant). To the year I became very sick and told I had to stay in the hospital for days. Since then I’ve been diagnosed with a lot of things, all wrong. But I don’t blame anyone, they did the best they could do with the tools they had and sent me on my way. From pancreatic cancer “possibility” from dark masses seen on a scan to a simple case of “gastritis” diagnosed once that mass disappeared. I’ve had my shares of highs and lows.

I'm Getting ThereI just guess some of us must take the long way round to get to our destination. Others get there quicker, for whatever reason, it doesn’t matter and like I always say, it’s not so much the journey but rather the destination. If you arrive at your destination that hope and tenacity fueled you to, that’s the blessing. I’m almost there, and everything before this day will just be memories of the situations that taught me patience and made me grow as a hopeful, strong person who doesn’t feel people don’t want to help you, it’s all about the money, rather they do want to help you and by doing so they earn that money.

My story isn’t over yet, I’m sure there’s more ups and downs to come, but that’s called life and life is precious. I’m holding at hope, this Achalasia thing will someday be less of a concern of mine. I’m pretty sure about that.

Intuition, it’s a Beautiful Thing

Intuition is a beautiful thing.  It’s that faint feeling that what you feel or hear may be more than what you think it 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.

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 be came 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.  But I do faintly remember what might have been a hospital room and wanting to go home, and I faintly remember standing on the dinner table and being given a raggedy ann doll with the family surrounding me (this was when I got to come home from the hospital I’m told), then given a football helmet (San Diego Chargers) to put on.  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 thought here was, I didn’t like hospitals, doctors, or San Diego Chargers. I now know why.

Protein Smoothies are my Life these daysThey 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.  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 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 say, “give me minute” and we’d all wait until whatever made it’s way down and the pain of something stuck in my chest was gone.

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!

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 or just wait it out situation.  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.

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.  I’d already been suspected as being anorexic, but beat that rap when people close to me saw that I tried to eat and during the times my swallowing problem was not happening, eat I did, and a lot! Then I was suspected of having bulimia. Well, she’s very thin and she runs into the bathroom after eating a bite of something, case solved, she’s bulimic, lets have an intervention.  No intervention was held but my family probably all figured I was indeed bulimic 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, 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, and other tests to measure the pressure in my esophagus to confirm achalasia, that this was a problem in the making for years. The fact that it wasn’t addressed and subsequently fixed had led to another diagnosis, Barretts Esophagus, a pre-cancerous situation where my esophagus has been fighting so long to do its job but couldn’t therefore it is pretty damaged.  You mess with something inside your body too much, it seems to develop cancer.  Fortunately I am told my Barretts is early, early and chances I get cancer of the esophagus are hugely low, they are there, but I’ve time to have it address as well as the swallowing problem which by now it epic.

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 go 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.

Meaning in my Mornings (my mornings are mean)

I said earlier, struggles will come and go, it’s life and this particular struggle has entered my mornings in the past year. It has taken me almost a year to search for meaning in it, because I have to always figure out what the heck?! Why this?’ if I’m the only person who feels this in the mornings, is there a fix? So, I finally Googled “morning depression” because that’s it in a nutshell. I’m awakened every morning in a horrible depression. Usually I’m sweating, in pain, almost paralyzed from even turning over much less putting my feet on the floor and trying to wake myself up from this horrible experience.

Once awake, and when I’ve managed to sit up for awhile, about an hour, the whole event, the depression, sweat, pain fades. On its own, without even a sip of water, it fades. Every single morning.

I’ve prayed before falling asleep that my morning will be normal, my old normal, where it just takes me a bit to wake up, my joints are sore but I’m used to it. I would always greet morning with anticipation of what the day will bring, what needs to be done today, etc.

But, this morning depression has pushed its way to the number one issue I dread, edging out the Achalasia pain when you can’t swallow and everything Lupus. Beating myself up has become a daily exercise.

However, I’ve felt, in my heart, that I need to find reasons followed by SOLUTIONS for this morning depression. Not the old me, where I’d find possible reasons and continue on searching all the bad, sad, negative stories, thus bringing me down even more and pushing that hope I’ve always had so far back in my mind that I felt no hope. I would just feel that this was yet another rotten symptom of my illnesses that I had to learn to live with.

That’s the difference here, an uncomfortable symptom appears, throw my hands up and say, “why me?! Really?! What more can happen?” Never say that, because something more can happen and you’ve (me, this isn’t a “how to handle things” blog, it’s me writing for myself. Getting it out, to revisit when dark days roll through) set yourself up for continually feeling as if you’re being punished. I’m not being punished, I happen to have Achalasia, systemic Lupus, and with these illnesses come symptoms, and with these symptoms come the challenge to identify ways, if not a cure, but at least to learn why and how to make them easier to deal with. Knowledge is power, with this power comes hope.

So, back to this morning depression thing. Since I’ve learned to research with a positive mindset instead of searching to find reasons to feel hopeless, I’ve been figuring out what may be happening and attempting to write things down to compare what might be leading to this. I’ve found an entire group of people who deal with this and the reasons, the research being done, how my current illnesses may be leading to it and how to try and change my nutrition or medications to see if I can ease it.

Continue reading Meaning in my Mornings (my mornings are mean)

Slowly to God I Turn

Something happens when words which form your thoughts and feelings are written down. They stay and don’t melt away like snow flakes or evaporate like rain, they stay.

These words I’ve written about illness, pain, situations I haven’t handled well have stayed here in my blog, to be revisited now and again. In doing so, I’ve learned a lot about myself. That I’m not the hopeful, faithful person I say I am. Instead, I’ve chosen to give negativity and the enemy my precious time and thought. I’ve not allowed the time and the room for healing of heart and understanding to take place. I closed a huge door and behind it I lived a sad, painful existence. Not noticing that the God I cried to was right there, with the answers and the love. No door holds God at bay, He’s there, but I have to realize I must look to Him instead of treading in this sea of self-pity and anger.

In the past 4 years, it seemed like I was under attack. I would mutter under my breath, “why does God want me to hurt like this?” Feeling all the losses and disappointments were some kind of punishment for not being a better person or because I’d broken some rule. But I never spoke TO God, I guess I thought telepathically He knew. I know God knows our hearts, He knows my thoughts before I think them and lately I’ve begun to turn to Him, honestly and with purpose I have begun to turn around and feel His presence in my quiet hours, and there are many quiet hours. My prayers I pray each day are filled with sincerity and aren’t prayers that are scripted with all the right words, spoken as if I was reading them from a book on Prayers Examples, as if there was such a book. Or nice quotes that have popped up on my Facebook news feed as if God is trying to reach me via Facebook, letting me know THIS is the prayer you should pray. I don’t think so.

All the situations, the disappointments with canceled appointments, mixups with doctors, nights sitting up in pain, days staring out this same window, that have manifested themselves in blog posts of negativity and complaints, that fell like rain into these posts and never evaporated. Instead they stained where they fell. They’ve stayed as a reminder of just how much I’ve not understood that God has been right there, patiently waiting for me to look to Him and to see that I have a purpose on this earth. I can choose to hate my illness and spend my days on earth in negativity or, I can understand that, just like the 40 years before I became ill I lived loving life and my Creator and lived wanting to be an example of His unconditional love. That maybe, just maybe these struggles were given me because I had the strength to carry them with Grace and most of all, with Faith. Faith that yes, I hurt and my life may seem like a daily struggle and sad, but rather it’s the life of a person who was created to be an example to others. The very title of this blog, Praise You in this Storm, had finally taken shape and sincerity.

Of course, from the looks of what I’ve written in previous posts, I am far from a person living my life with Grace and Faith. But for whatever reason, I’ve recently been in a constant dialogue with God, turning my thoughts around daily from the usual negative patterns to finally speaking to God and honestly feeling I want to enjoy this day and I’m so thankful I have it. I’ve started my days telling God, “Lord, today I seek you in all that I do and I thank you so much for this day.” It’s not some exercise in whether positive words and prayer can change the pain or take away the struggles. It’s an honest feeling I’ve gained that is more pure and true than anything I’ve felt.

These are victories, victories in gaining a purpose so much larger than being a good example to others. They are victories of finding myself again, that person who truly is thankful for all things. A person who wants others to see that although I have illnesses that have changed the person who was 20 years ago, but hasn’t changed the heart and core of the positive and helpful person I used to be. Yes, I took a lengthy detour and wasn’t a positive person. The smile that people always enjoyed seeing in me had faded but was coming back, is coming back.

life is a gift, no matter how it’s wrapped

Why has this happened? What profound event has opened my eyes to my truth of who I am and what I feel my purpose is? I can’t say, all I know is I’ve had many trials lately and I’m amazed I’m still able to smile, to laugh with people close to me. That life is a gift, no matter how it’s wrapped. That no matter how old I am, where I’m at in my life, my grandsons are watching me. I’m still an example. Not only to them, but to others who may feel as if they’ve no purpose, that maybe if they weren’t on this earth it would be better for everyone. No, it would be a huge loss, that being a person in pain isn’t a punishment, it’s not even a test, it’s a situation that no one is immune to so carry that pain with Faith. That pain proves I’m human, I’m fragile and that by my actions and words I can show others, who may be hurting, there is hope, that there will be better days, followed by tough days, and that living with pain requires strength. You have strengths. My strength I have found in the Lord.


This quote I’ve taken from a fellow blogger named Savannah. Her words on Faith and chronic Illness have taught me so much about positivity lately:

So today I set out with purpose, an unconscious knowledge that life is to be lived, and living to me means a positive journey given me by my Creator to either enjoy and learn from or to waste away the beautiful blessings that surround me. It is doable even as I struggle on days I can’t get out of bed or my brain just can’t get it together. That these are snippets of pain that can make or break me. Because when I come out of the fog of unrelenting pain, a blessing has always been waiting to hug and hold me and to make me smile.

I waited to write this, thinking I just had a good day or a fairly lighter stage of pain week. Of course I’m going to be all butterflies and blue birds singing. I’m not bent over the toilet throwing up. Of course I’ll be full of optimism so let’s hurry up and write this down and share it. But I know better than to write blog posts when I’m in an emotional high or low. I write in draft and wait days before deciding whether to publish it. However this realization has come on little by little and has stayed. I’ve been growing in the knowledge that I, Susie, am a Child of God, loved and cherished. It doesn’t matter if a doctor or a receptionist is rude, my goodness they see many people day in and day out in some form of suffering and it’s their job to fix them. What matters is I’m not defined by my illness so why do I allow it to ruin each day so easily that I stress at how people I don’t know react towards me. They don’t dislike me and want me ill, they don’t know me. Maybe they, themselves, have struggles I could only imagine. I walked into a recent appointment laughing, and left feeling as though I was a nobody, hurt, sad, quietly sitting in the passenger seat feeling no hope. Now that’s how strongly the enemy can turn a situation around so you begin to doubt your Loving God. Making a small situation into a negative reasoning that no one cares, not even God, and I might as well just give up. Oh not today, that is the time to fight the enemy and prove to yourself (that is who matters here) that what I read in my Bible is the word of God, and He will never leave nor forsake me. That is my truth and therefore I must turn it around. And so the journey begins again of faith by grace. By the way, laughter has the natural ability to release pain relieving endorphins. When I laugh, my soul is lifted. When I pray, my soul soars. I know tough days are ahead but knowing they are and dreading it to the point of paralyzing sadness or knowing they are and that I am created to be strong, that the troubles will pass, just pray, is what has changed me. I’m human, I will stumble and fall. But, I will get back up with the help of my Creator and all the people who love me and I love them. This blog post I will read again I’m sure, and hopefully it will remind me of my strength and how God is my Strength.

So worth it and God thank You for your patience and your guidance. You truly are the God of all Comfort.

Toughen Up Butter Cup! Achalasia, you’re The Dinner Guest that Never Left.

Since I’ve decided to journal via my blog, my journey through the maze of; diagnosis of an illness and the crazy ride after diagnosis you take, I seem to have taken myself seriously and actually written each day this week. I know that people probably won’t see the words I write. I understand I write for the purpose of getting out what festers in my brain that is full of “what if’s” and “how did this happen?” But it is actually helpful. Why didn’t I do this years ago through teenage angst or mid-life crisis?!!! Oh, because there wasn’t an Internet much less an iPhone with a WordPress App. Also, my ADD wouldn’t have allowed me 5 minutes of concentration to form my thoughts and write them down.

How I ever trained horses for so many years and worked in the high stress film and television industry I’ll never know. I stood up for myself and was a woman respected in a male dominated world. They were my friends as well as co-workers. Maybe it’s because we’re all from ranching communities where hard work and long hours were normal. I say all this because I used to be tough, tough enough to stand up for myself as long as I was kind and fair.

This week of frustration at the medical community, the surgeon, the mixups and my resulting “poor me, don’t they know I can’t swallow that delicious looking chicken noodle soup?!!” I have witnessed on the news unbelievable shock and sadness at the gunning down of innocent people doing innocent things. I’ve read a young family member’s posts about what it feels like after having her colon removed. Her bright attitude saying it is hard but she knows things will be better. And (I know you’re not supposed to start a sentence with AND) I have to say that life and the struggles that come are what you make it. I have been so totally immersed within a self-pity that would rival any Hollywood A Lister who didn’t get the table she requested at the best restaurant in the city.

I’m currently at a crossroads. I’ve been absolutely, concretely diagnosed with a swallowing disorder or rather, my esophagus is closed off at the bottom. I’m to have surgery but, by whom I don’t know because I was referred to a surgeon who’s specialty is GERD, therefore he thinks I have GERD and didn’t do the surgery. But did look in there and saw the problem and dilated it with a balloon and called it good. So I got upset, threw a tantrum in the presence of only my husband in between throwing up, and said “whaaaaaaa! What just happened?! I’m still sick! Do I go back to the doctors that diagnosed me and tell them, Hey I didn’t get that surgery you told me about but I did get some more endoscopies and a balloon!” Or, do I move on to a second opinion and hope whoever I find will look at my five endoscopic procedures and see the problem and get that surgery going?

Who knows what I’ll do. Because right now I’m thinking about people who struggle with things unimaginable. I’m an empathic person. I feel the pain of others in a way that I am not physically in the same pain but rather I hurt for them. I want them to be well, I want them to be happy. I don’t want to upset anyone, therefore I wouldn’t stand up to that surgeon during my first and only meeting with him when he was interrupting me. I wasn’t able to correctly communicate to him my symptoms because he’d interrupt me and say things like, “you mean your chest burns and you spit food up into your mouth?” No! My chest has never burned and I don’t “spit up,” I eat something then I begin to hurt horribly down between my breast bone, the pain gets intense, I end up throwing up. So, therefore where I was diagnosed with achalasia he didn’t agree, he was sure I felt burning in chest area and spit up acid. Leading to not getting the achalasia surgery. My inability to interrupt him back and tell him, “please give me a moment. No, what you are saying is not what I just said. I don’t doubt I have acid somewhere but, my problem is severe pain at BOTTOM of esophagus where it meets my stomach from the food or liquid trying to move through. It is getting worse. I feel like an elephant is sitting, not on my chest but right here, between my breast bone. I don’t have heartburn. I have taken heartburn’ medicine in case that was the problem and it made no difference. There is something that is mechanically wrong in this area, the area your colleagues identified as the bottom of my esophagus.” I didn’t get to say that to him. Because I didn’t want him to get mad at me. I didn’t want to “take up his precious time because good doctors like him are very busy and very important. Why that’s why I had to wait so long for this appointment! He’s the boss and I need to listen to him” Now how sick is that behavior?!

In retrospect I recognized that my inability to view my situation as it truly was, an important consultation to iron out all the things that must be done before surgery. To meet the surgeon I’d been matched up with. This was an important appointment, one that would set out, before me, the procedures and surgery that will ultimately give me back an important part of my life, my ability to eat and drink and not be in constant pain. But instead, I walked out of an office in the big city feeling like I’d just lost my momentum and hope. I went to the store, bought some heartburn medicine and went home. Sadly the medicine did nothing for my attacks.

What would follow is months of miscommunications, frustration, and me feeling like I’d never get this fixed because a surgeon changed my diagnosis and set me lose.

I’m sure, had I stood up for myself and brought the consultation back to my Achalasia diagnosis and the POEM surgery I would probably have had the surgery, maybe not. But I must take responsibility for my part in all this. I’m a sick, people pleasing, shy, woman who people don’t take seriously because I can’t say what I feel. What I feel is, I didn’t need numerous, repeated endoscopies within months of each other. I feel I was matched with a surgeon that does hundreds of endoscopies and surgeries, and doesn’t take the time to discuss before or after what he’s doing. I feel like a nice little market steer at the cattle auction, gate opens, I run in and around while the auctioneer hollers my worth, the gate opens back up and I’m ushered out to make room for the next cow.

And this is where I’ll leave this post, in quiet contemplation of my Achalasia, thinking about how my young friend is handling her illness with such grace and hope and thinking about how small me having Achalasia is in a world gone mad. Telling myself it’s time to stop beating up surgeons, doctors their clinics. It’s time to switch gears and discuss solutions instead of the self-pity I seem to love writing about.

I’ve completely forgot about how my Lupus affects me every day. This is good.

Honesty, Age and Loss

Wow! I’m catching up on my blog! But when the ideas and feelings finally come it’s important that I get them out (I’m told anyway).

In August I had a very BIG birthday. Not a big party, but the number is a big one. Why I won’t share that number is my own problem. I should be thankful for this many years. I am, I just don’t need to share it.

I do love this age however. Like my sweet mother told me long ago, the older you get the less what people think of you matters. So, is this true? For me I have to say YES. But, strangely so, I continue to try to please everyone, tell them what I think they want to hear, allow others to use my inability to say “no I will not come out and fix your computer.” I only have myself to blame though. A simple, “I’m sorry but I’m not up on these new operating systems, I’d do more harm than good” would work better than getting upset that there’s always a reason for the call and it’s not to just say hello and invite me to lunch. I run around helping everyone with whatever they’ve asked of me. They all know I’m sick. They all tell me to take care of myself and be good to myself. But I’m needed (I can fix computers!) so that makes me feel I have a purpose I guess. Yes, at this age I care less of what people think of me BUT I continue to try to please everyone to the point where I make myself more sick by stressing to get there and fix something.

I decided to try something new, to actually ASK a friend for help. It was tough to get the nerve up to do so. But not only was I needing someone to talk to, a part of me felt curious to see if 1.) I had the guts to ask for something and 2.) they’d say yes or would help. So, I finally told my close friend that I’m depressed and in a dark place. I’d never struggled with feelings like this before and didn’t know how to help myself. That this Achalasia thing was taking a real toll on me, more so than Lupus ever had, and I’m spinning my wheels. I texted her actually, because I didn’t want to call her in case she was busy, or interrupt her day (a huge part of people pleasing is never be a burden….my own take on people pleasing etiquette). Texting always seems like a sure fire way to communicate with people and not “interfere “ with their day! Yes, I know, I’m doing that “caring what people think of me” thing I said I don’t do since I’m older now. So I texted her my big “I’m depressed…” share.

She texted back later that day (see, I knew she was busy or she would certainly had gotten right back to me since I never talk about myself but instead I make light of everything, and joke around about this symptom or that. When my truth is, I’m hurting, afraid, exhausted and at my wits end) and her text response was, “just hand it over to God. He knows your heart.” followed by a request to come visit her and could I fix a technical issue they’re having with a computer.

Continue reading Honesty, Age and Loss

Achalasia isn’t a Rock Band

Once upon a time I was dealing with systemic lupus. An illness which brought my life as I knew it for 40 years to a halt. I grew up on a cattle ranch and also raised and trained quarter horses. I enjoyed a fun career as a horse wrangler/trainer and stunt woman in films & television. However the symptoms of Lupus made it impossible to continue.

Since the diagnosis 16 years ago I’ve learned to live and deal with Lupus SLE. In my previous posts, I ranted and complained, I also blamed. But the title of my blog is Praise You in this Storm. There was no praising going on. I have to say that this attitude did nothing to help me nor did it help others dealing with lupus and for that, I’m sorry. Because I found other bloggers who truly did offer help, and hope. THAT is what I needed. Now that I’ve been diagnosed with another illness that has caused me more pain and suffering than anything, I realize the need for a positive, more helpful blog. Sharing the journey of my Achalasia illness, how it progressed and what I’m hopeful for.

Achalasia is a condition where the esophagus closes off, in my case at the bottom, so swallowing has become almost impossible. This condition progresses quickly, so what began as food and liquid getting stuck and requiring me to wait for it to go down or run a spit it out is now a painful condition which has caused me to lose a lot of weight (from 110 lbs. back down to 88 lbs. and currently trying to gain) due to either not eating because I’m afraid of the acute pain which has been mistaken for a pancreatitis attack, or due to vomiting food and liquid that pooled at the bottom and absolutely wouldn’t go down.

Several hospital stays later, a doctor who listened to my symptoms and didn’t interrupt me with ideas of why I have abdominal pain and vomiting later, I received the diagnostic tests which conclusively diagnosed Achalasia.

While in the hospital they attempted to insert a nasal feeding tube but it kept hanging up and I would choke. So, I had a barium swallow test and it showed how the barium just stopped in my esophagus. Then an endoscopy called an EGD was done and another called an EUS showed how my esophagus closed.

Since those tests, the GI Specialists all agreed that I had Achalasia and said there was a surgery available that would help me. My Achalasia was bad and wasn’t just a annoying condition, for whatever reason, maybe due to lupus, Achalasia progressed so quickly.

I was sent to see the surgeon who would do the POEM surgery but this is where my journey went downhill fast.

He looked over all the results and felt I had GERD and acid reflux even though I’d never had heartburn or any problem of burning. He decided to repeat the endoscopies. I did have the esophageal manometry test which proved I did have a definite problem with my esophagus closing off.

I’ve yet to have my surgery. It’s been almost a year since I was told I needed to have it. This year has been filled with additional endoscopies, consultations with the surgeon, appointments canceled for me because, even though my insurance had paid thousands of dollars and 100% on repeat procedures, I had a balance I was paying on. But I wasn’t paying it quickly enough. I owed $800 but had already paid at least $8,000 between insurance and myself. I showed up with $180 at my follow up appointment to get back on track and see the original GI Specialist who diagnosed Achalasia but it wasn’t enough of a payment and my appointment was canceled and I was turned away.

Meanwhile I am suffering, I’m not complaining here, I’m just saying I’m suffering and afraid of how quickly this illness has progressed. The last endoscopy my biopsy showed Barrettes Esophagus now.

I’m frustrated and I can certainly gather the money to pay what the clinic is requesting but I’ve become numb. I feel like the money is more important than the patient. I’ve had 4 or 5 endoscopies in the last 12 months, consultations, hospital stay. Everything but $800 is paid and I’m paying that off. But putting your health and esophagus in the hands of a group who turned me away after I’ve been through so much additional testing, trusting they know what they’re doing but suddenly one surgeon changes the diagnosis. Then, he doesn’t do the surgery but rather a balloon dilation I didn’t know he did until I requested my records.

I just want this problem fixed and it’s all so strange. How I was so glad they’d finally diagnosed me. How they gave me hope, there’s a surgery they can do! I follow directions and contact the surgeon I’m matched with, and because he’s a GERD Specialist my surgery gets put off and the hunt for a GERD diagnosis begins.

I know I have Achalasia. I believe the 3 Specialists who have looked, tested and found I do. But I’m at a road block. It’s difficult for me to bring the money, hand it over, then I’m allowed to see the wizard. That’s how it feels.

I didn’t ask for numerous, costly diagnostic procedures. I was diagnosed the first round.

But I must have fallen through the cracks. Or the surgeon really thinks a balloon fixed it (it didn’t, I’m worse), or they just don’t want me as a patient. I don’t know and I don’t know what to do, how to proceed.

I’m trying to be honest with myself, give the clinic the benefit of the doubt, trusting of a surgeon who wouldn’t let me talk, stopped all progress towards the surgery.

When your weak from your illness, it’s very hard to advocate for yourself. I think last week, being turned away from my long awaited appointment because I was $40 short in the cash I brought to pay on my bill, just broke me inside. I lost hope that a doctor really wants to help me.