Updates Galore

Grab a cup of tea or coffee. It's a long one, my friends.

"Wow. Six vials? They are checking for everything." The Phlebotomist said.

The corners of my mouth lifted. "Yes, they are."

My glee for bloodwork was silly, but I wanted to know immediately if all my treatments and therapies since March had improved my numbers.

Waiting for the results was like the NFL draft; my phone alerted me through MyChart, "The result for your Metabolic Panel is in."

CBC came in first, and everything was normal. One down, 4 to go. Really the Vitamin B12 & 6 numbers were the crucial ones. Vitamin B6 takes a few days, but I felt if my B12 had improved, my 6 had as well.

Metabolic came in second, and everything was beautiful.

Lipid Panel was fantastic!

Okay, B12 had to come soon.

I stalked my phone.

Finally, right before bed, the results were in.

HUGE IMPROVEMENT!

200 to 2000!

B12 doesn't present toxicity issues like B6, so the high number is safe.

A few days later, my B6 results arrived, and I went from 2 to 14! Progress! The vitamin injections worked. Toxic levels for B6 are 65; I'm nowhere close, so that's good. I'm not in remission due to my Trigeminal Neuralgia; I have a bit of improvement with my face. Facial weakness is minimal. My sweat glands are working again on my forehead; the numbness continues on the crown of my head, in my forehead, left cheek, and tongue tip. I have more control over my facial movements and continue to practice in the mirror. My facial pain resides heavily across my nose, but it's manageable most days. The criss-cross of the artery in my Trigeminal Nerve isn't something surgeons want to mess with; that's understandable. It's risky surgery, and my medical team isn't encouraging it.

I have Erythromelalgia (I just call it hot feet) in my hands and feet; it's a rare condition from my Small Fiber Neuropathy that causes burning pain and redness episodes. My flares up during excessive heat, exercise, and stress. Thank goodness for ice socks and mittens, especially during the summer months.

9 months ago, I could hardly walk, let alone climb the stairs. We were terrified because we didn't know if I would need a wheelchair or if this was something far worse. Smiling and laughing were difficult to hold due to facial weakness. The left side of my mouth would droop at any given time.

My brain isn't the same. My memory is off at times, and I take notes on everything. My doctor described it as Brain Fog on Steriods. My nerves lacked connection for some time due to the lack of Vitamin B; the damage to my Myelin Sheath may not fully regenerate.

Now, what happened to me that August morning is one my medical team differs on; however, they do agree that it was significant and changed me forever.

With all that, I didn't stop seeking answers. I didn't stop with "We don't know." If one doctor didn't know, I went to the next. I tried different therapies; if it didn't work, I tried a different one. One of the most complex parts was tapering off the Lyrica, but I will discuss that experience another day.

I am rebuilding my muscles, and my walk is steadier, and every time I walk around my neighborhood, even a few blocks, I am proud of myself. I'm elated when I write, read, wiggle my toes, hold a smile, exercise, and walk barefoot in the grass. I'm improving every day.

I have my moments; yesterday was one of them when my body flings up the closed sign. My nervous system says, "You've hit your limits. If you aren't going to stop, I will make you." And she does.

---

Sometimes something happens, and it shakes up your life. It completely flips you upside down—your landscape changes. You question everything. You wonder if you lacked Faith.

I did.

I still do at times.

But then I see the meaning in the mess. I don't always like it.

In fact, I loathe it.

And then, when I least expect it, there is a splinter of Hope.

---

Most of you are aware of my dad's cancer diagnosis; a couple of weeks ago, he had bloodwork done since his first 1/2 dose round of chemotherapy. The Oncologist was in awe of my dad's results. His bloodwork was astonishing, considering the circumstances. Even his liver enzymes were great. Blood pressure and oxygen levels were also good. His Oncologist was pleased and decided to up his chemotherapy to a full dose every four weeks instead of three weeks. He even mentioned immunotherapy down the road. My dad has since completed round 2 and is gaining energy daily.

Look, I've been working my ancestors and angels hard lately; we will take this win and run with it like a streaker on a football field. His Oncologist can tell us statistics and speak words like incurable all day, but I believe in miracles. I believe the impossible is possible. I believe what is unseen is seen with conviction. I believe the chemo is working, and the cancer cells are folding in.

---

Belief is powerful.

Some people think Faith is only found in church or scripture or spoken by a person behind a pulpit. A form of Faith is Love; it's talking to your ancestors, it's encouraging your child's big dreams, it's rage praying on the shower floor, it's questioning life and people while in your car in the middle of the grocery parking lot, it's wishing on a falling star, and it's watching the sunrise with your partner.

Faith is within. It's ours.

It's not in someone else’s hands.

Love belongs to us.

I ask of you all to continue with your uplifting words and prayers for my dad, continue the love and encouragement; we feel them, and he feels them. Their impact is mighty. Our family is beyond grateful.