The Queen of Weird Diseases

The Queen of Weird Diseases

This week I have spent time at home recovering from a cryo ablation to my heart on Monday (for atrial fibrillation). Actually, it’s not been as bad as I thought it might be. As a Linda Ronstadt song says, “The waiting is the hardest part.”

Back in July I had a brilliant idea to schedule a bunch of doctor’s appointments, my 56,000 mile tuneup, as I called it. I had no idea what I was getting myself into. I scheduled a visit with my cardiologist (whom I had not visited in two years) and finally got around to calling a colorectal surgeon to take care of an embarrassing little problem I’ve had for a couple of years. My GI doctor had referred me to this surgeon on my last visit to him (nearly a couple of years ago). He said she could give me Botox injections to “fluff up” my butthole. Lovely. The thought of that daunted me and did not motivate me want to go see her.

However, I had an appointment and I went. She recommended that I see a physical therapist. I thought, “Okay, whatever” and went to Results Physiotherapy to see a pelvic floor specialist. Oh my gosh. Never knew that a doctor’s visit would be so intimate. I thought I was familiar with that after having been to an obstretician/gynecologist over the past 30 years, but no, this was even more intimate. I discovered I have a prolapsed bladder, and I had to do several exercises like Kegels, clamshells, and leg raises to work my gluteus medius. And all that was before I even got to work on the real problem, which, as I mentioned, is personal and embarrassing. At this point I am ready to deal with it through exercises so I don’t have to have yet another surgery.

Meanwhile, my visit to the cardiologist resulted in my wearing a heart monitor for a month, because the doctor had no documented cases of atrial fibrillation other than when I had a stress echo (treadmill) test about 9 years ago. I know I have something weird going on with my heart, because my pulse races and pounds in my temples (palpitations), and I get short of breath and lightheaded with mildly strenuous exercise (walking up an incline or doing some poses in yoga).

So I got going with my physical therapy, which turned out to be twice a week, and then I discovered it could take as long as 3 months. I got up in the morning thinking, “What day is it and what time do I have to be at the doctor and which one do I go to?” It wreaked havoc with my work schedule.

All this is in addition to two autoimmune disorders I have: primary biliary cirrhosis, so far kept at bay by medication (since 1989) and CREST syndrome, a disorder I discovered I had about a year ago. That little autoimmune disorder carries with it several interesting complications: calcinosis (calcium deposits, which I have discovered are quite painful and flare up from time to time in my elbows), Reynaud’s phenomenon, esophageal dysfunction, scleroderma (hardening of the skin, both outside and in my connective tissues), and telangio-something (red dots under my skin, which may travel to my face and make me extra attractive in my older years). The chronic diseases are something I deal with all the time, which means that I may be extra fatigued or have a flareup of a calcium deposit (which can land me in the hospital if not caught soon enough), and of course the acid reflux that goes along with my esophagus (I have actually had 2 ablations for Barrett’s esophagus).

While I was wearing the heart monitor, I had a documented episode of atrial fibrillation (heart racing up to 200 beats per minute), which finally convinced my cardiologist to refer me to an electrophysiologist for evaluation for a possible ablation. Hence I had the ablation, and I must say it’s the easiest surgery I’ve had to date. All that hurt after the surgery were my elbows from lying on the calcium deposits for so long. So I’ve been resting up this week.

All that is to say, it’s important to stay on top of all the symptoms of my weird diseases, though I may not be brave enough to schedule another tuneup where I do a blitz of several doctors at once. My rheumatologist told me that I am tough, which he likes. That was enough to get me through the next several months. Yes, I can be tough, but it helps for a medical professional to recognize that. His assessment gave me enough oomph to get through all the needles and the courage to face the unknown with my ablation. Hopefully this is the last of my medical drama for a good while!

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Two Storms That Shook My Faith

Two Storms That Shook My Faith

This morning as I was reading Openings: A Daybook of Saints, Psalms, and Prayer by Larry James Peacock, I decided to follow the suggestion “write about some storm you have experienced.” It could be an actual storm or an inner storm that shook my faith, a time of doubt or despair, a time I needed the power and strength of God. Here’s what I wrote:

O God, probably the biggest storm that shook my faith
was when my mom became ill with Parkinson’s disease and developed dementia (among other unpleasant symptoms)
My dad was her caregiver,
and I lived 300 miles away.
I felt so guilty not being there,
yet how could I be in two places at once?

At the beginning of the storm, it was 1986 when my mom was diagnosed. I was 26 years old.
Then as the storm raged and she grew worse, I was 27 and pregnant with my first child.
Our son, Daniel, was born, and John and I faithfully traveled to Kingsport
every six weeks or so to see my parents,
who could not travel by that time due to my mom’s condition.
Those years are a blur in my memory.

Another storm occurred when I was 30:
I was diagnosed with an autoimmune disorder,
though at the time I was told it was liver disease.
Suddenly I was faced with the prospect of my own mortality.
I was so afraid. John was afraid.
Our pastor came to see me at the hospital
and told me that this was one of the speed bumps on the road of life.
Somehow that remark calmed me and gave me a little perspective.
John and I desperately wanted another child,
and we asked the doctor about my life expectancy
and the advisability of having more children.
After all, I wanted to be around to help raise them.
My doctor consulted with experts in my disease (primary biliary cirrhosis)
and was told this condition usually occurs in middle-aged to older women.
Still, the experts thought that I would have a normal life span
and so we could proceed with our plans to have another child.
In 1990, when Daniel was 3 years, 8 months, our daughter,
Julie, was born. What a blessing! What a bundle of joy! How tired Mom was,
but oh, so joyful.

Back to storm #1. In 1991, Daniel was 4 and Julie was 6 months old.
I received a phone call on February 10 from my dad,
informing me that my mom had just died.
We had been expecting this news for a couple of months,
as my mother was hospitalized since December
and had spiked many high fevers,
and I had said good-bye to her when we left Kingsport after Christmas.
I knew. I knew I would never see my mother again this side
of heaven. It was hard. Oh, so hard.
She could barely speak (and then only incoherent thoughts),
but we held hands and I told her I loved her
and I knew that we would be together again someday with Jesus.

God, I was so afraid. Yet you were there with me then, Lord.
You kindly listened to all my frustrated ramblings, anxious thoughts,
depressed feelings,
And you were there when the worst thing imaginable for me finally happened:
my mother died.

Those days after her death were a blur: so many decisions to be made.
I remember my cousin Sue’s kindness:
She washed a couple of blouses and hung up two suits on the door
of my mother’s closet,
narrowing the choices for me as I decided what my mom — my cheerleader and encourager and beginning-to-be best friend —
would be buried in.

I recall shopping for caskets in the big, hidden room at the funeral home —
it struck me as a strange and ludicrous task —
and I was trying to be mindful of my dad’s budget (not knowing exactly what it was)
and the expectations of my family.
I finally selected a silvery rose-colored casket with roses sculpted on the corner.
My mom loved flowers, and I figured those would please her.

I remember the flood of people who came to the funeral home visitation
and the minister who said, “It was God’s will,” meaning that my mom’s time had come.
Something inside me raged, “No! It was NOT God’s will.” I wanted to shout at him, “No! It was not God’s will that my mother,
a kind, dedicated, loving, Christian woman
should be struck down in what was supposed to be the chapter of life where she slowed down a bit, relaxed, and enjoyed traveling with my dad — something my parents had always planned to do during retirement
but never had a chance, thanks to that old Parkinson’s disease.
My mom was supposed to enjoy her grandchildren
and be there to guide me as I learned how to be a mother myself.
No, it was not God’s will that she have this awful disease
that robbed her mind as it ravaged her body, making it rigid and trembling
and causing her face to freeze in an expressionless stare.”

God, somehow I knew, I knew
that you wanted the best for my mom,
my dad, my family,
and me.
And so with your help I got through those painful days.
You sent friends just when I needed them
and just in the way I needed them to minister to me.
One work friend called on the day of Mommy’s funeral
Just to check in and offer support and listen to me
and remind me that I had people in Nashville who loved me
and would be ready to receive me with love and wrap their arms around
me when we returned home.

The flowers we got at the funeral home comforted me,
reminding me of how much my mother loved flowers
and visible tokens of how much she and my dad and I were loved.
In my opinion, it’s not a waste to send flowers to a family (even if they specify “in lieu of flowers,” which we did in the obituary).
You need a few cheerful, bright, hopeful things
to focus on amid the shadows, gloom, and darkness of sorrow and grief.

My college friends who came to the visitation —
oh, how sweet were their faces
and how welcome among the many faces I didn’t know,
all the distant cousins my dad kept introducing me to
who came out of the hollows and, seemingly, the woodwork.

Yes, you were there, dear Lord and sweet brother, Jesus,
You held my hand and had my back.
You listened to me cry and fumble for words when there were no words.
Thank you, Lord, thank you.
And you are still with me to this day.

All my heart can say is,”I love you, Lord
and I lift my voice to worship you,
O my soul, rejoice…”

Dear God, loving Lord, and comforting Holy Spirit,
thank you for seeing me through those dark days
and for your promise that you will never leave me alone.
My heart and soul are blessed.

Blessed be the name of the Lord,
in whom I hope and trust.