Tag Archives: autoimmune

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.

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

Once in a blue moon

Blue Moon, July 31, 2015
Blue Moon, July 31, 2015

NOW I get it. I’ve used it many times, “once in a blue moon.” It doesn’t happen very often, and as I said, “as sure as the sun goes down and this moon comes up, I’ll be fighting.” Little did I know this event would fit my situation so well. That when you are living a life with obstacles around every corner, it’s easy to just be a negative person with no joy to be found OR be the most positive inspiration ever, smiling through your pain and telling others who suffer that they too can smile, be positive and BEAT THIS DISEASE!

I live my life in reality. If I feel crummy, I go seek out those things that have brought me joy; music, nature, the mountains, the sky, humor. So a support group for me isn’t an option, I don’t want to sit and compare my aches, my chances, or compare symptoms. I want to smile, laugh, sleep if I want. Because Lupus isn’t WHO I am, it’s an illness I have, and it doesn’t define me. That’s the positive message I want to share. That I’ll not always have the answers to my own personal struggles that come and go with lupus, but once in a blue moon it will hit me, “yes, sure today was crummy, tomorrow may be worse? So it’s time to go seek those things that brought me joy at one time. Keep fighting it. Laughter, smiling, beauty we see with the eye or hear with the ear release endorphins that no drug I’ve been prescribed yet can match for changing my crummy attitude.”

imageI was lupus tired yesterday. I figured there would be no viewing of a blue moon last night. But I set my tripod up anyway and when it showed up, well that was it! I was no longer tired, and I started snapping pictures. For an hour I forgot about struggles, aches and pains, and enjoyed a once in a blue moon moment! So, if you’re having a tough day getting through the maze of pain, illness, fear, and stumbled upon this blog, this is how I “deal” with the negative, by seeking out the positive. Doesn’t always work, but sometimes it does. I’m my own support because I know myself best.  There is beauty everywhere in this hateful world.

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.