Tag Archives: Lupus SLE

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.

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

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

As sure as the sun goes down and this moon comes up, I’ll be fighting

Taken in July 2015. Made me feel good to just stare and taken it all in...
Taken in July 2015. Made me feel good to just stare and taken it all in…

I can do this.  I can. And once I’ve done it, I will help someone else hear those words and BELIEVE them.  If you can, reach out and offer your hand or your positive wisdom to someone having a crummy day.  Not for a “Nicesest Person” award for the week, but because you looked in their eyes and saw the pain you’re so familiar with.

Something I’ve realized lately as well.  When you are sick with an illness, such as MS, Cancer, CF, or my little companion, Systemic Lupus (SLE) and are in pain and dealing with all that illness brings daily…..you don’t have the energy or the “give a rip” to even give those who speak about you and your illness a second thought.  You don’t care to address the “but you don’t look sick” comments. It doesn’t matter what others think, you are just too busy hanging on.

Turn the Other Cheek…. If You’re Able To Move

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“I do not feel like I have the courage for this journey, but I have Jesus—and He will provide. He has given me so much to be grateful for, and that gratitude, that wondering over His love, will cover us all. And it will carry us—carry us in ways we cannot comprehend.” from Kara Tippetts, Mundane Faithfulness

This post is more for my own personal venting. Venting about two months of trying to find a new doctor and what I’ve encountered. Poor me, yes I’m choosing to feel sorry for myself for a moment. Long enough to first write the disclaimer that I do indeed have FAITH, I know I’m not alone in this. But the human in me needs to get this out, to share my real nightmare journey. That I don’t feel like I need to always smile, to always respond, “Oh I’m ok, tomorrow is a new day and new blessings.” I’m being real here. Even with Faith, I have very low times and I question why or I’m struggling to hear from God how I can help myself.

The above quote from the fabulously faithful Kara Tippetts’ blog, who recently went to her eternal home after her long fight with cancer, came to my mind. She shared her journey. The up’s the down’s the in betweens. Her Faith was solid. I learned a lot from her writings. I felt like I had no business complaining or whining. My illness isn’t “terminal.” It’s just “loaded with preservatives.” Meaning, with new drugs like Prednisone and Plaquenil you’re expiration date is longer. The life expectancy for someone with Lupus wasn’t too good but in the last ten years they’ve come a huge way and a person can live a long a long life. But this disease is one big cruel mystery, a ever ending lineup of sub-contracting illnesses like kidney disease, heart disease, all known as “complications of Lupus.” So you don’t get the “Terminal” stamp but rather the “It’s Complicated” stamp. I feel like I’m at the carnival riding in one of the rail cars in the haunted house. You don’t know what to expect around the next corner.

GI Tract Complications
GI Tract Complications

How dare I break down and complain?! Truth is, I can if I want to. Then I can count my blessings which are many.  My journey is not a constantly torturous one, nor is it in preparation for my journey to my eternal home. Thing is, it’s not considered terminal so don’t get your affairs in order….BUT, it CAN take your life, “we just don’t know.”

A known illness like SLE may have a name, but its cruelty is a mystery, it’s determined to keep the sufferer in constant, painful transition. To give false hopes of a reprieve, before it shows you it has the power to take your last breath from you. However, it can’t take His love from me and the blessed assurance Jesus’ constant presence is mine and I know where I’m going. I’m not blindly following a religion because “now I’m sick,” I’ve spent my life in a private journey learning about God, Jesus and my own PERSONAL beliefs and relationship with a loving Creator

I had the honor of being interviewed by the Lupus Foundation’s magazine, Lupus Now, in their Spring 2015 issue. The topic I was asked about is Lupus and GI Tract problems. I was interviewed back in November of 2014 when I still had a primary doctor and things were looking up. I mentioned being your own advocate and it turned out I really needed to and still need to be so. Read this interview here.

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But I am human and I’m tired and frustrated.

I love my Creator. God has been my constant companion throughout my life. I work hard at living my life from His teachings. Jesus is my Savior. Now comes the part of me that has had just about enough of struggling through mankind’s messing things meant for good up. Greed, unkindness, a knack for superiority over those unable to fight for themselves. I always forgive, the meek SHALL indeed inherit the earth, however, the “turning the other cheek..” part has been difficult because I’m unable to turn the other cheek. It’s too painful, Lupus SLE and kidney disease has me pretty much unable to move, I can’t turn my body….period. It hurts.

Ha, ha I know. Funny analogy! But painfully true. I’m taking a step back from complaining about senseless, everyday annoyances. I have a story to tell. It’s of my journey in the healthcare maze these last several months. Actually, it started back in November of 2013 with a hospitalization for acute pancreatitis but I won’t bore myself or anyone who accidentally reads my blog with the specifics.

Continue reading Turn the Other Cheek…. If You’re Able To Move

Fight, Flight or Faint? STRESS!

imageAt some point in your life you learn to listen to that voice inside that gives everyone the benefit of the doubt and you weed through the BS you allow people to put you through. It’s important when you are on the quest to beat your illness. You either lay down and let sickness take over or you fight. I decided to fight. Because I know I can get better or at least better at dealing with a chronic illness. With SLE, my attitude each day impacts the severity of my symptoms. STRESS and SLE don’t mix. STRESS and I don’t get along. Whether it’s Lupus SLE, Cancer, MS whatever, STRESS is not your friend and the fight or flight instinct becomes fight or faint. Not everyone has the ability to quiet the mind, meditate, slow themselves down. I know I don’t and wish I could. My brain just doesn’t operate that way (another story) and I don’t want to take medications to slow who I am down. Continue reading Fight, Flight or Faint? STRESS!

Pursuit of Passion

Me with my trusty bass guitar
Me with my trusty bass guitar

After my diagnosis and all the tag along illnesses that came with it, I decided ENOUGH! I must find something to do on the days I have that allow me a few hours of peace.  Of course I’d choose playing an instrument which required dexterity and healthy fingers and a memory. RA and Lupus don’t really lend themselves to learning to play a bass guitar but that was my part of my passion, music. I knew I needed to exercise my painful joints before I lose the ability TO use them if that were to happen plus I always seem to pick the difficult pursuits for myself. This is a video about WHY I decided to learn the bass.

Since starting my YouTube channel I’ve gotten many comments, mostly good but a fair share of bad comments.  Ranging from “you suck really bad” to “you are an inspiration.” I received many comments from people simply informing me I was playing the bass incorrectly. hold it wrong, etc.  I guess they didn’t read my Channel Information about why I took this endeavor up. Here is my video explaining why I decided to learn the bass. My PlaysBass site is here
http://www.playsbass.com
(Does anyone know how difficult it is to talk into a camera by yourself?! Ha!!! I Had to start over several times because I’d start laughing at myself. Pull yourself together Susie!)