That’s a Tough One to Swallow

Three years ago, on the heels of my 50-something birthday, I was in a local hospital for the better part of the day, walking the halls, locating different examination areas I was scheduled to visit to hopefully aid my gastroenterologist in ultimately diagnosing the choking issues I had experienced for years.

I’m not the kind of person who runs to the doctor at the first sign of trouble. That’s just not me. My former General Practitoner knew by the time I scheduled an appointment with him, I had been having issues for a minimum of six months, often times longer.

My gastro specialist came highly recommended by family and friends. Dr. M. couldn’t make a diagnosis without the proper testing, so ready or not, here we go. I had an upper endoscopy, a barium swallow test, and the god-awful manometry test. When they hand you a barf bag, that’s your first clue this isn’t going to be pretty.

What ultimately brought me to the doctor after all this time? Fear of dying. I was finding myself regularly choking on a granola bar, rice, fries, just to cite a few, but bread was the absolute worst. The disorder intensified where I even began choking on water. What scared me was when I would choke so severely, my daughters would hold the phone in their hands, with bated breath, ready to dial 911. That happened at least three times. That broke my heart to see them so scared.

The symptoms escalated when I began choking in my sleep. I can’t even describe it, but it was scary as hell. I would spring straight out of bed and attempt to take breaths, which resulted in a deafening, inhaling sound but without a whisper of an exhale. It felt like I couldn’t breathe! I would look at myself in the bathroom mirror, hands clenched on the counter, horrible thoughts racing, and, well, it was sad. I can’t revisit that scenario without getting upset. You could hear me trying to breathe all throughout the house. I would strike the walls or doors as my plea for help when I was really frightened. I didn’t want to die alone. Ugh, that was awful.

My husband was there for one such episode, and he told me I was, in fact, breathing. He saw me struggling, but he assured me I WAS BREATHING, but you could have fooled me. We may never know exactly what “that” was, but if that never happens again, it’ll be too soon.

It was about that time, I decided to finally seek professional help. After the testing, my physician told me I had Achalasia, a rare disorder. It’s found in 1 in 100,000 people and is associated with an auto-immune disease. My issues consist of the muscles in my esophagus not contracting (due to a nervous system breakdown) and therefore cannot move the food down “the pike”. In addition to that, the flap at the bottom of my esophagus (sphincter, also called LES) primarily stays closed, consequently causing everything I eat and drink to back up in the esophagus which results in an uncomfortable fullness in my throat. Add to that the choking I mentioned earlier. Talk about the trifecta. Are you getting the picture? When the food does begin to travel, it feels like chest pains in a vertical line precisely where the esophagus is located. It would get my attention mid-sentence every time.

My doctor’s first course of action was to start with Botox. I thought great, I finally get some Botox but it’s on the inside where no one will see it. Bummer. It merely lessened the severity of the symptoms for six months. During that process, he also dilated or stretched my esophagus. Imagine my disappointment when it was short-lived. He advised me not to have any more procedures done in the event I opted to have surgery at a later date. The procedures could result in scar tissue and not be advantageous for me during the operation.

There is no cure for Achalasia thus far. Doctors only offer procedures to hopefully diminish the severity of the rare disorder.

After those six months, all the symptoms came back and then began to worsen. I had come to a place where it seemed if I drank anything cold, it would worsen the symptoms. My daughter suggested drinking room temperature water because she surmised cold water, in all likelihood, constricts the esophagus. It made sense to me. So from that time forward, I have become a three-bottle, room-temperature, water-bottle toting Mama. I bring my water everywhere. Most meals require at least three full 16-ounce bottles to feel like the entirety of my meal isn’t sitting in my throat. I drink coffee in the morning and water the remainder of the time.

Desperate for answers and with the assistance of my doctor, we were not able to find any physicians in the 300-mile radius that could address my growing list of complaints as the issues multiplied. I told my doctor to find me someone in the continental United States, and, without hesitation he referred me to the Cleveland Clinic. The clinic has doctors that specialize in Achalasia and they perform surgeries every single week of the year. They are the premier hospital to visit in the US or so I’ve been told.

While I spent several days in Cleveland in the Fall, getting up-to-date test results, one particular finding startled me and yet confirmed so many things. I had fasted an entire day due to tests. After testing, I ate a few bites of salad and then a little ice cream at about 4 p.m. That’s all I had that particular day. The following day, I was to fast again and report for an Upper GI at 1 p.m.

This doctor quizzed me on what I had eaten in the last 48 hours. She was not happy I had eaten at all. What she said next, I need to be written down on a prescription pad for all the world to see and believe. She told me salad is the WORST thing I could be eating because it is so fibrous. She mentioned meat, especially red meat as well. After I mentioned I had shared some ice cream too, she quickly responded that ice cream was great. Eat all I want.

I’ve waited my whole life to hear words like that! There is a God.

The test results validated what I had been feeling. My esophagus was completely full of food at 1:30 p.m., almost 24 hours after I had eaten. The little meal I had the day before was right there for all the world to see.

We have consulted with a surgeon and are strongly considering having a robotic, laparoscopic Heller Myotomy soon.

I share all of this because we need to raise awareness of Achalasia. If others have any of these symptoms, just start a diary and find a reputable gastroenterologist.

With a smile and a happy heart,

Elle

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Three Statements I Remember When My Mother Died

“Is she really dead?” “Wow! My life just drastically changed!” “Girls, you get to have your Mama back.” These are the three statements I remember the moment my mother died.

On the evening of January 2, 2019, my ten-year journey of caring for my sweet Mother came to an end when she took her last breath. Just seeing those words in print as I write them still evokes such emotion, down to my core. The last 48 hours of her life would wreck me and, in the same sense, release me from the position of caregiver. What a tidal wave of emotions. At 91 years old, she was no longer trapped inside her frame,  a far cry from the beautiful, brilliant, hard-working, active woman we had known and loved.

Forty-eight hours before Mom passed, I had received a call from my daughter-in-law asking if I could come to Texas. My son had been hospitalized and was critically ill. I checked the schedule of the 24-hour sitters I had lined up for Mom and let each of them know I would be out of town indefinitely and would not be able to continue with my 7 a.m. and 7 p.m. shift change check-ins.  They understood and offered their prayers for my son.

I sat with Mom all day Saturday and Sunday prior to New Years’ which, in hindsight, was an extra measure of blessing from God.  I noticed she had begun wheezing and made a judgment call to put her on oxygen.  I was not alarmed or worried, I just wanted to help her struggle less.  On my way out of town on December 31, I stopped by Mama’ s apartment to check on her and the sitter for the day.  Mom was still on oxygen, not better or worse from the day before and I knew she was in great hands.  I visited for a half-hour, loved on her, kissed on her, and left in tears.  The emotions were more for my son at this point.  There was no indication Mama’s health would decline.

I had a five-hour drive ahead of me and half-way through the journey, I called the sitter to check on Mom and her wheezing.  Imagine my shock when she told me that Mom had started the “death rattle.”  I asked her to put the phone to her mouth so I could hear it.  I pulled to the shoulder, my head spinning and my heart breaking and I wept.  I was so torn.  My son was critically ill and now my Mother too.  In all the times I imagined the scenario in my mind of exactly how Mom’s death would play out, this, my friend, was never one I could have dreamt of.  I immediately called my sister and told her about my son and to drop everything and get to Mama.  In the previous twelve months, Mom had experienced several unresponsive events and serious falls so I was beginning to sound like the little boy that cried wolf!  My sister could not get a flight until the next morning.  Mom was in God’s hands.

I made it to my son’s bedside in the hospital and was not prepared for how bad he looked and sounded.  I felt like the wind had been knocked out of me.  My thoughts were racing…my son or my Mom.  Would God take one or both of them?   I could not and would not choose who to be with.  It was an impossible choice.  I had been Mom’s caregiver for ten years.  I didn’t know how long she had, but I never dreamt I wouldn’t be by her side.  My son was young, active and healthy.  His prognosis was grim, it came suddenly and from out-of-the-blue.

As soon as I saw my son and heard the prognosis, I called my husband and my younger son and told them they needed to come immediately, which they did.  While I jumped in to help my daughter-in-law with the grandkids and sit with my son, I was getting news from home that Mom was not doing well.

My sister arrived midday in our hometown on January 1 and when she walked into Mom’s room, she heard the horrific sounds Mom was making.  It was indeed the death rattle and our precious Mom was struggling.  This was the beginning of her journey home.  She was given morphine and I felt my sister would take excellent care of Mom.  My oldest sister from Alabama also drove home to be with Mom.  I was constantly in contact with them, Hospice, the facility where Mom lived, and the sitter and I was, as they say, “Eat Up!”  I was a basket case.  So worried about two of the most precious people in my life.

When you’re crying your eyes out and can’t hardly breathe and your precious 4-year-old grandson hugs you, puts his head on your shoulder and says three things I hope I never forget: 1) grown-ups aren’t supposed to cry 2) Angels fly really fast (meaning to minister to Mamaw) 3) We should pray for people when they are dying and then he prayed for his Mamaw. Sweetest thing ever. He now knows grown-ups do indeed cry and his Meme cries a lot!!

My son seemed to begin turning a corner on the morning of January 2 and had procedures scheduled later that day.   Like I said before, I could not choose between my son and my mother, however, my son could.  Although he was still very weak and not out of the woods, with hardly an audible voice, he told me I needed to go home and finish the journey I had been on with Mamaw the past ten years.  He assured me he was going to be fine.  Have you ever had the feeling where a knife is stuck in your gut?  Magnify that times ten.  After much persuasion and assurance by my husband and son, I agreed to head home and so thankful my younger son agreed to drive me.  My husband stayed behind in my place.

My son and I  arrived back in our hometown and went straight to Moms.  As I entered the room I heard my Mom struggling to breathe and was introduced to the awful “death rattle”.    I went to her bedside in disbelief that this had transpired so quickly and yet so thankful I was able to be by her side.  Friends, family,  and workers all stopped by to visit throughout the day and say their goodbyes.  Word had spread quickly.  She had always been a favorite at the assisted living facility.  We prayed, we sang songs around her bedside, we told her she could go and we would be okay, we assured her we loved her and she was a wonderful mother and we waited.  

I had been awake for well over 24 hours at this point and as I sat by Mom’s side hour after hour, I was really feeling the effects.  About 9 p.m., I looked at my sisters and my daughters and told them I was going home to get a quick nap.  I was exhausted and we had no idea how much longer this would go on.  I asked them to be sure and call me if anything changed.  I only lived 10 minutes away, five minutes if I broke the speed limit.

Shortly after 10 p.m. my sister called to tell me “it was happening.”  I ran through the house waking the girls up and we hustled out the door.  We ran through the halls of the complex and reached Mom’s room.  I walked in and went to her bedside.  No more rattling sounds.  My sisters were weeping as was everyone in the room. I kissed Mama and asked my sister, “Is she really dead?”  I mean I had thought about this moment so many times, dreamt about it and could not believe I was standing by her side and she was gone.  No more waking her up, holding hands, getting her dressed for the day and then again for bedtime, feeding her, standing in the gap for her being her adversary.  No more songs, no more silliness, no more out-of-the-blue poignant and profound statements.  She was gone.  My sister confirmed she was gone.  Realizing the gravity of the situation, realizing that the prayer I had been praying for two months was answered, I let out a deep sigh and whispered, “My life has just drastically changed!”  Ten years seeing her nearly every day and the last year twice a day with much more intense care.  It was over.  God answered my prayer and took her swiftly and without having to suffer.  I am so thankful He honored my plea to do so.  He is a merciful God.

After things settled down a bit, I overheard my sister talking to my daughters that were standing in the hallway.  What she said hit me hard.   “Girls, you get to have your Mama back.”  Just let that sink in.    Not only did I make sacrifices while caring for Mom, but my entire family also did, especially my husband and children.

I want to believe I was an example to my children of how we should care for our parents and the elderly in general.  I hope I was an inspiration to them.  I trust over the years they learned about respecting and caring for the older generation and how to care for those who have memory loss in particular.  I pray I leave my children with a legacy of love for others, even those who make you uncomfortable.  Work through it.    Everyone needs to feel loved.  Stop and take the time to talk to them. Open doors. Sing songs.  Hold hands.  Push their wheelchairs.  Sit at their feet, who cares if they ramble, let them ramble.  I’ve learned through all of this not everyone is a caregiver but everyone can be kind and caring.  

I never expected my husband not to be with me when Mom passed.  He was as much a part of her care as I was.  My mom adored him.  It would be another five days before I would see him again.  I was on my own without the two most important people to help me… my Mom and my husband.  My son stayed in the hospital for a week, unable to attend Mom’s funeral.  We are so thankful he had a full recovery and is doing well.

A year later and we have walked through all the “firsts” and survived.  My sisters and I  walked out the first couple of months by multiple group calls almost daily, it was very therapeutic.  We are going to make it.

The Last Mile

Walking with Mom as I’ve done so many times. This would be the last time.

Rest in peace Mama,

Elle

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My 35th Anniversary of a Miracle

In 1981, in the heat of the summer, my beloved and I vowed our love to one another surrounded by several family members and a host of friends. After being married three short months, having never had any medical problems previously, I was pretty certain I had become pregnant. With much excitement, I went to the doctor expecting him to confirm the great news.

Unfortunately, the opposite occurred. The doctor told me I was, in fact, not pregnant and he believed I had a tumor on my pituitary gland causing the absence of my menses. He referred me to M.D. Anderson in Texas.

I became a patient under the care of the third top gynecologist in the world. I did not have a tumor but was a patient there for over nine months, I was told I had a four percent chance of ever conceiving children.

To be quite honest, my life is not what I dreamed of as a teenager. I had no plans of getting married (yet just celebrated our 38th anniversary) and although I loved children, I had no desire to have children either. Its amazing how quickly your mindset changes when you are told by a group of reputable doctors how unlikely it is that you will have children on your own. My thoughts become obsessed with the news I had been handed and I was not happy. I did want children. Please don’t tell me I can’t. I do want children.

Three years later, I defeated the odds (a miracle of God) and was with child. You can imagine my delight. Frankly, it didn’t matter if the baby was a boy or girl, I just wanted to be a Mother. I remember wearing maternity clothes at three months along. I was clueless, obviously.

The pregnancy was textbook except for the part where “lil bit” decided the womb was a pretty nice place. Our bundle of joy arrived three weeks late. and still, at that time, I had to be induced. My son arrived as a half-grown child at 9 lbs., 9 ozs. and was 21 3/4″ long. God is so good. I named him after my father that had passed away when I was 17. Life was good.

My first born miracle

Billy was an interesting child to watch. He played independently often but loved playing with his buddies just as much. He was quite good at Legos, drawing, and imitating sounds. He was also a natural actor in our church musicals, usually having the lead role. Not only could he act, but he sang, played piano, guitar and drums. I love that as an adult he has always used his talent, his gift, for the Lord.

Today as he celebrates his 35th birthday, I have to remember the one who made my son’s life even possible. The story began with negative news, a four percent chance of conceiving and a slim chance of ever being called the beloved name, Mama. The story ends with not only having my first child, but that God blessed us with FOUR children! Four percent…four children! You cannot tell me God is not in the details. When man says one thing, wait on the Lord and see what He says.

My Mother with my four blessings

I love my son, Billy, and I am so unbelievably proud of the son, husband and father he is. He is an exemplary big brother to his siblings and serves the Lord alongside his wife. Happy birthday, son. You truly are a gift from God. We love you so much.

With a smile and a very HAPPY heart,

Elle

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Your First Birthday in Heaven

Today marks the first birthday my Mother was not here, touchable, tangible, huggable. But oh, she was here in spirit. Even without her present, that absolutely could not stop me from honoring and celebrating her life and legacy. I have posted many, many posts on social media along with some wonderful videos of the birthday girl singing. They are sure to put a smile on the viewers face.

Mama and my two daughters

I woke up several times last night, smiled, and whispered out loud, “Happy birthday, Mama.” I had a dream that I was feeding her at the facility where she lived the past ten years. I’ve never had a dream like that. She looked great and was wearing a red mock turtleneck.

My parents gravesite

Yesterday, my daughter, Mel, told me she wanted to go to the gravesite with me this morning. I was so touched by her gesture and thoughtfulness. Before I got dressed for my trip to the graveyard, I made my coffee and began watching the news when suddenly Mom’s dear friends’ picture showed up on the birthday announcement segment on our local channel. Mom and Mrs. J. had celebrated birthdays together my entire life and oddly enough even shared the same name. Today Mrs. J. turned 90 years old, two years younger than Mom would have been. I started tearing up and thought, Aw, poor Mrs. J doesn’t have her buddy here anymore. Within a few minutes, I got my emotions under control when I received the sweetest text from my niece. Cue the tears, again! About thirty minutes go by and in my door walks Chrissy, one of my daughters, bearing gifts. She had the day off of teaching school and brought me a slice of Mom’s favorite cake, Italian Cream Cake, along with a flower arrangement with some of Mom’s own flowers that she had incorporated in her recent wedding. She crawled onto my lap and I cried. My two daughters were there to support their ole Mama and all this transpired before 7:30 a.m.

We spent time at Mom’s grave as I recounted stories of when my Dad first died and some of the idiotic things I did. One such story was after I knew my husband was THE one, I brought him out to the graveyard to “meet” my dad. Yes, I knew my Dad wasn’t there, but I was only 18. That was my “first rodeo” in the arena of grief. My husband humored me over and over and over again. What a keeper.

Italian Cream Cake

After we left the cemetery, we came back home, shared the one slice of cake and just talked. I thoroughly enjoyed this much-needed time with my girls. Chrissy told me she planned to take me out to lunch as well at my Mom’s favorite fast-food restaurant, Dairy Barn. I think they thought of everything. It made for a much better day all the way around.

Lastly, my sister and best friend called me to make sure I was okay. I was glad to report that I was and I am. One day at a time sweet Jesus.

With a smile and a happy heart, Happy birthday in heaven Mama!

Elle

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