Category Archives: autoimmune

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.

How Photography Helps Me

Bald Eagle
My friend the eagle

I’m not a professional photographer.  I’m a person, with a camera who happens to love taking photos of the things in my life that bring me joy or things I want to have to look at in the future.  Being ill with chronic illnesses is a full-time job. Swirling around me are doctor appointments, managing the phone calls reminding me of doctor appointments, invasive tests, pain, questions, medical bills, hospital visits, anger, wrong diagnosis, right diagnosis, trips to the pharmacy, insurance problems, explaining… lots and lots of explaining. This is along with living life as a wife, mother and grandparent trying to act like I’m just fine because everyone has an opinion, if you just keep your struggles or problems to yourself then you don’t have to listen to the well meaning loved ones constant suggestions or, sometimes their anger at you.  I don’t blame them, I understand that they love me, maybe they’re scared but trying to not act it, their life is affected too.  I know when they’re using my illness as a way to not take responsibility for bad or rude behavior or saying hurtful things as well.  I don’t care if I’m sick or 100% healthy, I have learned that if someone sees your weakness, and they know you don’t have the energy to fight, they will do and say things they’d probably never do or say if I wasn’t just too sick to take action. So, I take responsibility and suggest counseling for us.  But back to photography.

Bald Eagles
Working together

All that comes with being ill with “diagnosed conditions” which is somehow a must have for the majority of people to treat you with respect and honor your less than perfect ability to meet everyone’s needs, I found I needed something to quiet my mind and release this anger.  I’m not an angry person, I thought, but I sure have a lot stored up.  However, by getting my camera and disappearing to my favorite places to take a photo or two or 500 I regain a calm that allows me to forget the pain and all that I must handle and instead, enjoy my life. The only person I should look to, to save me or to help me is ME.  My attitude towards all I deal with is going to either make me an angry sick person with a pessimistic outlook on everything which I never liked being around, or is going to help me see that I’m not totally gone, useless, broken, hopeless and numb.  Rarely am I well enough lately to take these photo opportunities.  But, if ever I get the chance, I fight to do it because it reminds me of all the beauty around me. Continue reading How Photography Helps Me

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.

The Long Journey to Be Honest with Self

I have had one heck of a negative year with my pancreas issues.  I have complained, blamed, made excuses, put off, until my body finally stopped me in my tracks and said it’s time to take a hard look at what you have, why you have it and what needs to be done.

What needs to be done is……. take control of this disease, advocate for myself, fight, fight, fight whoever wants to stray from the initial diagnosis and go on wild goose chases. But most importantly, listen to God.  He has my back, He does lead me where I need to go, but I have stubbornly spent my precious time and energy, which is now exhausted, doing the wrong things.

I believe, now, that by the time you’re my age, you KNOW your body.  You know what doesn’t feel right.  You know when things are off, when things aren’t working.  Also, hopefully you’ve come to the realization that doctors aren’t all saints that have ALL the answers.  They are people who’ve  spent years training.  But if they haven’t trained in what ails you, and they don’t send you to someone who has, you may find yourself in situations that are life threatening, frustrating and useless.

I have chronic pancreatitis, along with a bile duct that gets obstructed.  My pancreas is also very sick with other problems which have begun to affect my blood sugar (I am not diabetic) and has caused me to have bouts of dangerously low drops in my blood glucose while in the hospital, sending doctors and nurses rushing in with orange juice, IV bags, questions.  Finally the answers to my questions of what is going on?! “Your glucose is 41, dangerously low, do you have diabetes?” No I don’t and I’ve been in the hospital now for five days, I think that would have been brought up.

I don’t care WHAT the labs say, just because my lipase isn’t sky high on this particular day, doesn’t mean I don’t have a problem in the area.  Just because my pancreas looked smashingly well on an EUS a month after I healed from a bout of pancreatitis and I only show a dilated duct, doesn’t mean something isn’t amiss.

I have had hospital stays after attacks have started where my lipase was sky high.  Ending up in the hospital for days on ice chips to give my pancreas a break.  Followed by weeks of feeling better.  Then it comes back.  These past six months a new and frightening symptom has emerged, severe weight loss and malnutrition along with blood glucose levels that drop to dangerous lows I knew nothing about until tested while in the hospital. Since I am not diabetic, I guess my sick pancreas is having an affect on my blood sugar.  I can’t gain weight dang it, and it’s so low I’ve had to be admitted for a feeding tube.  The feeding tube in the nose idea didn’t work, seems that I have an esophagus problem too.

Why blog about my crazy health? Because maybe there is a person out there, at home alone, scared, in pain, no answers just like me, scouring the Internet for others suffering.  Are they alone? Is this normal? Am I going to be ok? That’s what I’ve been doing and seeing that there are people suffering and their stories have helped me to understand I am not alone and although my heart aches for them as I read their stories, I draw upon their strength. 

There is something about how God leads me to the places that I need to be. He opens doors that take me to answers I needed. I don’t want to wake up every morning only to complain and be depressed because I have a problem with this.  First off, I want to wake up every morning!  Secondly I want to have a positive plan to get healthy, fix the problem and if it isn’t fixable then learn ways to live a full life with it.

There ARE people out there doing so.  I have family, friends that I love that I want to enjoy.  I haven’t been because I haven’t fought hard enough to get well.  Oh I’ve followed every doctor’s order, I eat what I’m supposed to, I’m trying with ALL my might to do what I’m told BUT, since I know my body better than anyone, I no longer blindly follow those doctors who say “yes you have an odd pancreas bile duct issue going on. If you get sick again just go to your local ER.”

No, that’s not good enough. Because my local ER is busy and even though my medical records are on that computer in their entirety, I must fully explain my health issues in between violent throwing up and severe pain. I must wait, even as my husband begs them to contact my doctor, for an ER doctor to determine if I’m a drug seeker, or am I REALLY having a pancreas attack? Am I 88 lbs because I binge and purge and I I have anorexic nervosa? Or, am I a closet alcoholic and this is causing me to have bouts of pancreatitis? They have to rule everything out and even though it’s frustrating I do understand why. That’s their job and they DO have to deal with these scenarios. But I’m not able to bypass the 20 questions like the old days and get going on an IV for my dehydration and to get this horrible nausea stopped. So the “go to the ER” just isn’t a good option. If I’m sick enough in whatever ER doctor’s eyes, I will be admitted for observation and a week of ice chips only to rest my sick pancreas.  What I want are answers and a plan. A plan to fix what is broken.

If it can’t be fixed, I don’t want these diagnoses that are like picked out of a hat of illnesses. Only to find out after expensive repeated testing I do not have that. Yes, it’s a lot like that, and it got me out of your ER and home drugged to the max, but I don’t have that and with each attack I’m getting worse.

My last hospital stay was a scary fiasco with different doctors coming up with different ideas. None of them having a thing to do with my pancreas. But like a good soldier I listened and did as told. But it made me realize I need to keep looking for that specialist that understands this very difficult area in my body. I’ve waited months to see my GI Specialist that took months to get a referral to.  My third GI doctor. But they didn’t come to the hospital as the dry erase board hanging in my hospital room said they would. I’ve no idea why until I’m told after release they didn’t know I was in the hospital. They knew because they’re the ones who told me to go to the ER and then be admitted.

Can you see my frustration? It’s difficult to fight, fight, fight when you are sick and weak. So fortunately I have an advocate. He stepped in because I FINALLY gave him the go ahead. My husband, whom I thought would overreact with his Italian anger was instead, professional, eloquent in his delivery of his concerns for me and spoke with the doctor’s and nurses at length. Something I couldn’t do. He was able to get our concerns across, to say it isn’t acceptable to allow a human being to starve and suffer. 

My daughter had told me that sometimes we need to take an honest look at ourselves, to be honest with ourselves. I didn’t understand what she meant at the time but I do now. That the only person who is going to fix me is me. Every one else are the tools I must use. The days of me trying to do this alone, trying to hide my pain and be the smiling, happy go lucky healthy person who just happens to look like death at 88 lbs. are over. I need help and I finally asked for it and allowed my husband to step in. 

The battle is still being waged, but with God, an advocate in my husband, support and knowledge from my daughter and love from my friends this battle has become easier to fight while it’s become more serious. But I have my tools, (sorry hubby and daughter, you’re not really tools) and I have a Loving Father to lean on. I have Jesus’s words to hold onto. They DO give me the strength I need and the knowledge that if this is what my life is to be right now, then do it as I try to do all things, pleasing to God. 

We are all just passing through anyway. As the scripture my late and dearly loved brother in law held firmly to, and shared with me as he knew he would soon be going to his heavenly home.

2 Corinthians 1:3-4

Praise to the God of All Comfort

3 Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, 4 who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.

I am comforted because I know where I’m going. But for now, I am here fighting the good fight. I may be officially called malnutritioned and have a chronically inflamed pancreas (I have so many different official diagnoses in my records but they all mean the same thing, just each doctor has a different name for it) and a stricture in my bile duct, I’m still perfectly perfect and a child of the most high God. It’s my belief and I don’t ever feel the need to explain it. I just know. 

Home from the hospital & posing with the grandsons!

Finally, to end this post I will leave you with the words of the last GI Specialist who took care of me in the hospital. As I waited anxiously in my hospital bed for him to come by to explain what he found in my latest testing….. “well, looks like you ate a little. Good! I think you have an esophagus problem too. You’ll get a call from my office, I’ve got to run, my wife is waiting at the airport!”

Ahhhhh, I know I feel better knowing NOTHING. The calmness I felt at a time I would have busted out crying which would have served no purpose can only have come from God. He calms my fears. 

Let’s Be Honest….Rowing My Boat

This summarizes being ill.... Just Keep Rowing Your Boat!
This summarizes being ill….
Just Keep Rowing Your Boat!

I haven’t “blogged” for awhile. I haven’t felt like it.  Not inspired to share anything with anyone even though I’m the only person who probably reads this blog. I guess I didn’t want to share anything with myself it sounds like…. “SHARE” a funny word to use. You “share” your pizza, you “share” your crayons. I decided to look the definition up in the Internet dictionary.  WOW! There’s the noun definition, the verb (used with object) definition, the verb (used without object) definition, the adverb definition and the Idioms. None of which fit “sharing bad news or how bad you feel.”

I use this blog to write my feelings that need to come out in an honest way and if someone who searches the tags I use, might find it, maybe they’ll see that they are not alone in feeling miserable. Even though they Love the Lord as I do, have unshakable Faith (wait, I guess mine is NOT unshakable?) they know He walks their journey with them, but they have many hours of feeling alone, afraid, or angry. That doesn’t mean they have lost their Faith, it just means they are HUMAN. When I write, I ramble. When I talk, I ramble.  I jump all over the place, I wish I didn’t, but I do. I probably break every rule I was taught in English Comp. I KNOW I’m breaking every common core rule. But I don’t really care, WordPress has allowed us to have free blogs and dang it, I’m going to BLOG!

Continue reading Let’s Be Honest….Rowing My Boat