Pills and Balloons

Heya, I know it has been awhile (again) but school started up last Monday and I have been pretty occupied with my homework and studies. I'm happy to say that it has kept me busy and distracted from the general pain caused my Achalasia. I've also been getting a crazy good amount of sleep, which seems to be helping a lot too. 

However, this weekend has been one of the hardest. The feeling of regurgitation has been getting more and more powerful. Every time I eat the pain has been more intense. It's like I can feel the food just sitting in my esophagus, not going anywhere. It is physically exhausting. I have spent a good portion of my weekend laying down and trying to relieve the pain. 

The good news, however, is that I finally got word from my doctors after weeks of waiting (yay!). Dr. C wants me to try taking a pill called a Calcium Channel Blocker which will relax the esophagus. Dr. C also noted that I was not supposed to be feeling symptoms again until I was about 40 or 50 years old. Well, sorry Dr. C, but I am feeling the pain and general irritation that is my disease. He told me my Achalasia is very aggressive, which makes it extra rare (yay?). Anyway, I should be starting this pill by Wednesday, so more to come on that!

But if the CCB doesn't work, I'm going to have to go in for a larger balloon dilation. And if that doesn't work, well, it's possible I will be back under the knife. Dr. C wants to avoid surgery due to its evasiveness, luckily it will be the last resort if needed. 

Here's to optimism and good health. Hoping for the CCB to work and hoping I don't have to go into surgery. 

The Twenty-Something-Year-Old and Her Esophagus

Guess who? The girl who hasn't written in her blog for over a week, that's who!

I apologize for the delay in posts, I have been lazy, but mostly because I have been waiting to hear back from my doctor which was almost too long. But on Monday I heard back from his office, which is good news. However, the bad news is he still doesn't know what to do with me.

This particular phone call annoyed me. Not really because of the uncertainty I was given, but because the person on the other line that said, "I could not continue the manometry." What is this "I" stuff? I wanted to continue the test. I let the doctor shove a probe down my nostril three different times. He even said the motility of my esophagus was what was causing the complication. And I know that this person delivering me this news had no way to possibly know that. All they knew was that it didn't work. I guess it bothered me because the failed test attempt absolutely terrified me. I nearly cried the entire day afterward because I was so traumatized.

Anyway.

That's not the important part. I can't let my pride in my strength get in the way of what was said and what I need to be focusing on: the next step. Basically what's happening (and I am shortening the names of my doctors for reasons) is my current doctor (Dr. S), the one who has been with me since I was 17-years old sent over all of my medical information to Dr. C in Salt Lake City (the doctor who performed my surgery five years ago) and asked him if a larger balloon dilation would help me before performing another Heller Myotomy. Right now, Dr. S is waiting for Dr. C to respond to that question before anything else can happen.

So that's where I am at right now. Waiting. Waiting. Waiting.

Waiting.

It seems to be the nature of Achalasia, I'm always waiting.

Waiting for food to go down.
Waiting for the pain to stop.
Waiting for the pain to start.
Waiting for the doctors.
Waiting for answers.
Waiting for awareness.
Waiting for test results.
Waiting for appointments.
Waiting in rooms.

Waiting, hoping, wishing for a cure.

I Cheated My Vegetarian Diet

I know it's been a couple of days since my last post. I went camping for the weekend with my Partner. It was a lovely weekend! It was a great way to celebrate the last few weeks of summer before school starts again. Unfortunately, my esophagus couldn't relax for most of the trip, which made sleeping in a tent more difficult but I managed to get through it. Lately, acid and stomach bile have been working their way up my esophagus, making waking up very unpleasant. I believe stomach bile breath is worse than morning breath. I have no idea how to prevent. It feels like my food sits in my sphincter and gets partially dissolved and then comes back up again. 

I slightly contributed this problem to the fact that I started eating meat again for a couple of days. After my failed manometry, I was feeling pretty down about myself and about life in general. I truly felt there was nothing more that could be done for me or my esophagus because the doctors can't figure out why the nerves are breaking down again. So my immediate reaction was to eat something comforting and all I craved at the time were boneless Sticky Fingers from Wingers. I struggled with for a couple of hours until my Partner finally comforted me into doing it, because I felt like (and still feel like) I'm not going to know when my last meal is going to be so it might as well be whatever I want it to be. I am so unbelievably paranoid of the day I start regurgitating everything I eat. 

So we went to Wingers and I ate six Sticky Fingers. They were delicious. The next day I ate a turkey sandwich. The day after I ate Orange Chicken from Panda Express. I couldn't really feel a difference from eating meat and not eating meat until I started having intense heartburn.

I am happy to say I am back on my regular vegetarian diet with the occasional fish meal, but I am still experiencing bad motility and bile reaching the top part of my throat. 

Overall I have felt physically terrible and I am scared about everything happening with my esophagus but I am happy. 

I will never stop being happy. 

Reasons Why I Did Not Cry During "The Fault in Our Stars"

1. I had read the book right before I saw the movie.

2. I had an esophageal spasm throughout the movie.

3. My tear ducts didn't want to.

4. The actor who played Isaac kept moving his eye that was suppose to be made of glass.

5. I had spent the entire afternoon crying because my esophageal manometry went horribly wrong.

Before the manometry I told the endoscopy doctor that I have already been diagnosed with Achalasia and he didn't understand why this test was being repeated. During the test he couldn't get the sensor probe down into my lower esophageal sphincter. The motility in my esophagus is so poor that the test had to be stopped. I gagged up all of the water I had drank all over myself and my doctors. It was horrifying and I couldn't stop myself from sobbing all of the way home and for hours after that.

There's a really great piece of dialogue said by Augustus Waters from the book on page 145, he says to Hazel, "What am I at war with? My cancer. And what is my cancer? My cancer is me. The tumors are made of me. They're made of me as surely as my brain and my heart are made of me."

What am I at war with?

My esophagus.

It's made of me. It's part of me. My brain tells it to function like an esophagus but it can't. I feel it trying. I feel every muscle, every nerve, every cell trying to function the way it is meant to function. But all my esophagus can do is close up on me and reject the food and water I try to feed my body.

I know what I have is not cancer. And I hope I never have to experience cancer. And maybe it's not fair to compare Achalasia to cancer.

But this is my pain and it is real.

And I am scared.

Breadsticks and Milkshakes

It's quite possible I'm going to be naming all of my posts after the food I ate that day. Maybe. We'll see what happens. 

Today was an okay esophagus day. My sphincter is fighting back pretty hard, but I'm still able to keep food down so there's that. 

My wonderful partner and I went to Judd's General Store and consumed soup, breadsticks, and milkshakes. The cheesy potato soup was delectable and went down easy. However, the breadsticks gave me the most trouble. My biggest eating mistake was getting Dr. Pepper with my meal instead of water. Normally I don't drink soda, but today it sounded especially good. If you have Achalasia I highly recommend not drinking soda. The carbonation is irritating and can cause spasms. That is what happened to me today. As soon as I felt the bread getting stuck, I took some big gulps of Dr. Pepper only to escalate the blockage. At one point I was certain I successfully pushed the food into my stomach and went ahead and ate some of my mint chocolate chip shake. The thickness and creaminess of the milkshake were stopped by my sphincter and caused a major spasm. My esophagus radiated uncomfortable pain throughout my body and I discontinued eating. Luckily I was able to finish my soup and breadsticks. 

At dinner time I could still feel my esophagus opening and closing, which forced me to eat an enchilada slower than I would have liked. I think one of the hardest parts about having Achalasia is re-teaching yourself to eat. I am constantly reminding myself to take small bites and chew well, but I only seem to remember when my esophagus is spazzing. I forgot this rule about an hour ago when I attempted to eat a bowl of carrots. Right now I can still feel my esophagus trying to relax. 

I am hoping for a better esophagus day tomorrow. I am scheduled to have an esophageal manometry on Wednesday. That's when I will find out if I need to have another Heller Myotomy. Let's hope for good news!

Here's to optimism and good health.

Biscuit Brunch and Gatorade

August 2, 2014

I drank a bottle of Gatorade and the liquid struggled to find my stomach. My esophagus tightened up like a rubber band was being wrapped around it. It lasted for several hours before my esophagus relaxed. If liquid is being blocked, I worry the spasms are going to become more intense. My greatest fear is regurgitation happening again.

August 3, 2014

This morning I woke up with horrible esophageal spasms. It made it difficult to know if I was hungry or not throughout the day. Thanks to my supportive and loving partner, Skyler, we had biscuits for brunch. Although I felt some minor blockage, the biscuits made it down into my stomach. Like always, I had to drink lots of water with the meal to make it possible.

I've noticed spasms hurt more and happen more frequently when I lie down on either of my sides. Lately I have been sleeping on my back, which seems to be helping.

Overall today has been a good esophagus day, I have minimum difficulties with eating and drinking.


Here's to optimism and good health.

Hi, I have Achalasia

I was diagnosed when I was 17-years old and had the Heller Myotomy surgery in 2009. Although I continued to experience esophageal spasms and acid reflux, the surgery was a great success. The last five years I was able to enjoy food and experience life with fewer complications.

However, lately I haven't been doing well. I started feeling more intense spasms from my esophagus back in March of this year. I thought it could be my eating habits, but even with alterations, I continued to feel the intense pain in my lower esophagus.

In June I had an endoscopy procedure, however, my doctor did not see any kind of blockage occurring. Ironically, this is exactly what happened five years ago when I had my first endoscopy. He stretched my esophagus and told me to watch it carefully. But despite the stretching I continued to feel the difficulties while eating and drinking.

In July I had a barium swallow where the radiologist informed me that my esophagus was not draining properly and it seems that the effects from the Heller Myotomy were no longer aiding me. Fun fact: same situation happened five years ago when I had my first barium swallow and was informed I might need surgery.

I am now waiting for the hospital to call me to schedule an esophageal manometry to determine whether or not I need another Heller Myotomy.

I was warned that the Heller Myotomy's effects can last anywhere from 5 to 20 years, but I never imagined I would be in the exact same spot I was in when I was 17-years old. This diary's purpose is to help me keep track of my diet and how I feel on a day-to-day bases. I also hope to help someone else out there with Achalasia to feel less alone.

Here's to optimism and good health.