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. 

MY LUPUS JOURNEY 2013 to Now

A republish of a post 5 years ago. I thought the worst had hit, but I was wrong. More illnesses and tougher battles and loss. Lupus SLE, Achalasia, pancreatitis, just a list of this and that! But, within the brokenness of these cruel illnesses is an understanding that what I see that is beautiful is so much more beautiful now. I take nothing for granted, I love with everything I have inside my heart. Like I said, Life is a GIFT, No matter how it’s wrapped.

This short video is how, in less than one year, a Lupus SLE flare took me for a ride. From feeling good and healthy to the brink of death. Then the struggle to gain back as much of me as I’ve been able to. I have a ways to go but I’m on my way.

All I have to do is wake up

Sometimes I feel as though she’s reading my mind. I thought no one else could possibly know, much less understand, my internal struggle. Or, have the same feelings as I do about my lupus. This blog is so well written, so raw, it’s healing my heart knowing I’m not alone. I always hear, “oh you’re not alone Susie, join a support group and find others to connect with!” Well I’ve tried but there was no connecting, just complaining. If I wanted to spend my precious energy getting ready, dressed, hair up in ponytail, and drive my tired aching body somewhere for support and to meet people dealing with the same illness I have, I don’t want to be brought down by the never ending competition for the evening of “who’s got a worse life today?” I want to learn how others cope, how I can change my attitude which at the present time is only adding to my depression and loss of hope.
This blog right here helps me in a positive way. Let go and Let God, be thankful for THIS day here, and whatever awaits me in the morning I shall deal with then.

silentlyheardonce

I was laying in bed this morning, debating if I should get up and take my medication or just lay here and try to go back to sleep. But that crazy question that has no answer continued to haunt me this morning. What is the meaning of this life I’m living? I can’t figure out what my reason for being is. I wonder if I’m living or existing. My days feel empty to me, yet I bask in my solitude and it makes as much sense as the life I live. I’m doing what I must do to wake each day, take meds, sleep, eat and shit. I go visit doctors to analyze my health; I go to the physical therapy/rehab. I spend hours on Facebook, peeking into other people’s lives and playing a game that has no real purpose.

Life once made sense, or maybe I thought it did…

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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!

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Bitter Pills

imageThe Hits or “Pills” as I call them, keep coming. I again take from Kara’s blog, a kindred spirit. What she’s blogged is what I feel but have been unable to put into words.

But here goes….
These big pills life keeps throwing have been tough to swallow. They are nasty, big, painful and they are refusing to go down. To those that know me and have cared, thank you for hearing my heavy heart. Thank you for loving me in the midst of my fear and despair. I’m tired of me. Thank you for hanging in here with me. I love you and every prayer you pray for me. To my friends and family, forgive me for avoiding you. My pain is great both inside and out, and I’m fighting out of this hole. Please know you are much loved. Your acts of kindness may seem small to you but are huge to me. I so appreciate that when you seek me out, it is to share a smile and not ask of me anything. You don’t point out the mountains that stand in my way, reminding me I have to eventually climb them, you don’t ask questions. Because you know me well enough to see it on my face, or by my actions, that I’m not well and that I’m fighting. You understand that I do not want to talk about my illness. I don’t want to be reminded I feel horrible. I know I’m missing out on important friendships and relationships but I’m sick and trying to act anything other than that is too hard for me now.

I’m Dorothy in the Wizard of Oz standing with my little dog Sophie in the long hallway, and the wizard is behind the curtain, I finally get a moment of his precious time, he will see me now. When I pull the curtain back there sits a man with a white lab coat and a name written on it.

Continue reading Bitter Pills

Lupus & Achalasia, words that sound cool but aren’t

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