Pineo-what? The newest diagnosis: I can’t make this stuff up!

On May 8, I went for my first MRI with contrast.

I thought I had already had an MRI with contrast in my brain, but after looking through all of my past “procedures,” I have had a brain CT with contrast, but no contrast with my almost half-a-dozen MRIs.

I am claustrophobic, but I have been able to manage the experience with a washcloth over my face; as long as the cloth is placed BEFORE they cage in my face, I have been just fine.

I am glad that the experience of being sucked up into a giant vacuum hose while lying caged in on my back does not even phase me (most likely because I have done this so many times—with my eyes shut).

Last May, when I was at the hospital because the left side of my face went numb following a UVLRX treatment (which had, somehow, opened up another layer of infection that had been brewing/hiding out), the neurologist came in to have a talk with me…

Mind you, every time a physician at the hospital comes in to see me, (s)he says, “I have read your chart and history…”

I somehow refrain from laughing aloud, but I am not quite sure how.

I would like to see my chart and history, please; it must be absolutely FASCINATING, because EVERY doctor has read it and wants to tell me so.

I envision it goes something like this: “Crazy woman in extreme pain. She isn’t drug seeking, but perhaps attention seeking.  She presents, yet again, to complain about chronic Lyme disease, fibromyalgia, adrenal insufficiency, anxiety, neck pain… You would think by this time she would get that it is ‘all in her head,’ but NOPE. She just keeps coming back complaining of symptoms of….”

Anyway, this not quite 30-something year-old doctor with a leather man-purse (murse)/satchel/cross-chest bag came in to see me.

He was long-haired and wore thick-edged, rounded spectacles—I would not even call them glasses.

Kind of like Harry Potter, but not cute—nerdy.

Very nerdy.

I wonder how long these physicians rehearse with one another what they will say to me…

“If she says this, say this:”

“If she starts to question your expert opinion, do this:”

Anyway, he came in and introduced himself to me.

Without testing me physically for any of the issues I had come in for that you WOULD for a stroke/mini-stroke, he said, “I have read your chart and history.” (HA!) “And I have taken a look at your MRI from today.  We do not think you have had a stroke.”

“Ever?” I asked. “Or just today, do you mean?”

“Well, most likely ever.”

“Okay, if I HAD, in fact, a TIA (mini-stroke) in October, would there be anything to show evidence of this on my MRI?”

“Well, no,” he said. “TIAs do not have lasting impact or cause permanent damage in the brain.”

“Hmm,” I said. (I already knew this.) “Okay, so what did I have back in October when my right leg and arm went numb and I was unable to speak—other than to slur?

Please, I mean no disrespect, and I appreciate your education on this issue, but unless you have ever had a TIA (I lilted my voice in effort to give him the opportunity to say ‘yes, ma’am, I have, in fact, had a TIA, which is why I am so interested in neurology’) or were in my body at the time, I do not feel confident in that assessment.”

“Well, we aren’t sure what that might have been, but didn’t you receive steroids for an adrenal crisis?”

“Yes, I went into an adrenal crisis after the numbness ‘episode.’”

He was losing in this conversation.

He should have taken more time to rehearse with one of the veteran doctors who had ‘interacted’ with me in the past; instead, he had to change the subject.

“Well, actually, because you are doing significantly better, we are thinking we will just keep an eye on this by having you in for another MRI in a year. The 7mm lesion is not of concern to us. We will look at something else when you get your next MRI.”

Since that date last May, I have looked at those darned MRI and CT impressions and narratives over two dozen times, and I totally overlooked the CT that read “incidental note of partially calcified pineal cyst”

EVERY.

SINGLE.

TIME.

I must have somehow thought that was what the 7mm lesion was, but it wasn’t.

Nope.

Not.

There was no other description in any of my other MRIs or CTs, so I thought nothing more of what might be hanging out in my brain until I accessed my newest MRI result online through my health portal.

Well, an MRI WITH contrast is definitely the gold standard; it shows a whole bunch more stuff than WITHOUT contrast…

Although it took me about an hour to fully decipher these medical terms (and I read medical journal articles for fun, mind you), the results didn’t finally hit me until I realized, “Holy crap! This is what the neurologist was REALLY interested in at last year.”

It is a “minimally prominent complex cystic lesion in the pineal region. Findings likely represent benign pineal cyst” (but remember, it was ‘partially calcified’ as described in my CT with contrast) “and these usually remain stable.”

Usually…

“In light of its prominent size, a cystic pineocytoma is possible. Consider follow-up in 6-12 months to ensure stability.”

Well, I said that I read medical journals for fun (actually, I really read them to advocate for myself and my symptoms; nonetheless, I am not intimidated by them), so I started reading up on pineal cysts versus pineocytomas.

Pretty much everything in the pineal region is in an area of the middle brain that you really don’t want anyone messing with.

AND, even MRIs WITH contrast cannot actually tell the difference between a cyst or a cytoma (tumor).

You literally do not know which one you have until the neurosurgeon cuts open your skull and starts digging for deeply buried treasure.

WTF.

No thanks.

I cannot make this crap up.

Generally, these things are not symptomatic, and, overwhelmingly, brain tumors are benign.

Given the size of my “whatever it is,” however (10mm x 12mm), I have a small gumball in my brain.

The pineal gland is also known in some cultures as the Third Eye.

I understand why now.

I literally have a baby ‘eye’ in my brain.

I looked at the symptoms, and I have some of them—the non-stop headaches, the dizziness when looking up, …

I Googled pineocytoma at neurosurgery.ucla.edu/pineocytoma and found this from UCLA Neurosurgery:

“Pineocytoma is one of several different types of tumors that arise in the area of the pineal gland, requiring different therapies. The exact diagnosis is critical for choosing the correct therapy. Pineal tumors typically present with hydrocephalus, a buildup of fluid pressure within the brain.”

Some things, namely my constant pressure headache/migraine on the left side of my head, seemed to make so much sense now, especially as my findings show ‘mucosal thickening.’

The pineal gland makes melatonin, which helps you to sleep; I thought my insomnia was from my steroids—perhaps not.

Mostly, I had been living my life with the faith and belief that I was going to be healed—just like God had promised me when I went to work for my church.

I was feeling pretty okay with acceptance of the testimony He was giving me through my health challenges thus far; I was certainly not looking for more to add to my trunk of ailments.

Since I first became ill, when I would pray in my prayer room, I would pray over my Bible and then open it up for His ‘healing’ message.

More often than not, it would open to 2 Corinthians 12:7-10.

“Therefore, in order to keep me from becoming conceited, I was given a thorn in my flesh, a messenger of satan, to torment me.

Three times I pleaded with the LORD to take it away from me.

But He said to me,

‘My grace is sufficient for you, for my power is made perfect in weakness.’

Therefore, I will boast all the more gladly about my weaknesses, so that CHRIST’s power may rest on me.

That is why, for CHRIST’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties.

For when I am weak, then I am strong.”

I did not question God when it would open to that verse, but I will admit that I just thought that He was somehow telling me that my Lyme would be chronic, like a thorn in my side, and that it would rear its ugly head when I wasn’t taking care of myself or keeping my priorities straight.

I didn’t think brain cyst/tumor, especially because I thought I had somehow received my fair share of health issues (“Uncle! Uncle!”).

I was really upset for a few days, especially when I saw my primary care physician, who kind of freaked out—just a little bit.

Then, when I got the call from that same neurologist from the hospital to discuss the results (when I have an appointment to see him in another week), I realized that this news was supposed to be rocking my world.

I cried and then sobbed myself to sleep.

BUT when I woke up the next morning, I had such a profound sense of peace and love.

It was then that the pieces were all coming together (Hindsight truly is 20-20).

I realized that God HAS been healing me—from my brokenness, sadness, hurts, un-forgiveness, loneliness, worries, anger…

He has been using these past 19 months to set the stage for me to deal powerfully with this ‘news’ that is SUPPOSED to be rocking my faith.

Instead, because of my unshaking faith, I am saying: “Ah, thank you, gumball, for sharing yourself with me. What a gift. Now I know, with certainty and without fail, that I need to make each day and each moment count toward my eternity.”

It had become easier and easier these past few months when I was feeling better and better to begin to stand on my own, upright—not clinging to God to hold me up.

But in every past trial or overwhelming situation—when I did not know where the next meal would come from to feed my family, or how the next bill would be paid, or how the next medication could be afforded, or how my salary could be managed without when I was too sick to work—when I had my hand, my heart, and my soul faithfully seeking God’s divine intervention, He ALWAYS came through.

ALWAYS.

While I would certainly not like to re-live any of those experiences, those were the times when I had the most faith—because faith was ALL that I had.

I was listening to KLOVE.com the other day, and they played the song “Even If” by MercyMe.

I listened (and still listen daily) to that song over and over and over again.

You see, I have already spent several months in bed, in excruciating pain, unable to move, sobbing, begging God to take away the pain or to take me out.

I have spent almost a year teaching myself balance by riding my bicycle, and, while I still fall and am unsteady at times, I catch myself more often than not.

I have physically had to decrease the amount of time, effort, and energy I used to spend (waste) on trivial matters—I have my priorities straight; I have no regrets; I enjoy spending my days by cherishing moments I used to disregard; I tell people I love that I do; I love my life.

I do.

It is well with my soul.

What a gift this all is to be able to accept, not resist, this next adventure in God’s divine plan for me.

I am certain it will be a roller coaster ride, but I like roller coasters.

They are also scary at times, too.

I may cry, scream, or vomit on this newest adventure, but I know God is in control, and I have faith in Him.

I promise to keep it real.

Time to Rebrand Myself!

Now that I am feeling so much better, I am on a new mission.

I am on an exciting quest to rebrand myself.

Similar to how Madonna rebranded herself from her Material Girl days to her bold Vogue debut, I declare myself fully emerged from my butterfly cocoon and in need  of a new and inspiring makeover (see my blog, Summoning Butterfly Strength, for more details).

For my debut (and because I have several free hours each day and LOVE research), I have been spending a ridiculous amount of time watching free webinars on Facebook discovering how to rebrand the new ME.

Yes, each of the webinars ends with an opportunity to spend hundreds to over a thousand dollars (No, I was not born yesterday; there is no free lunch).

Thankfully, I have taken Dave Ramsey’s Financial Peace University, so I am pretty responsible with money, and I am not like a crazy QVC shopper with daily deliveries coming to my door (We paid off $72,299.24 in student loan debt and were debt free until my Lyme illness and the subsequent medical bills)!

I was about eight, free webinars in to my research when I came upon a webinar inviting me to Badass My Brand.

Bells and whistles!

Whoop! Whoop! Whoop!

Side Note: Even though I have always worked in government, education, or, most recently, for a religious institution, I have great respect for people who use bold cuss words well.

It is an under-rated art form.

Did You Know: People who cuss a lot are more intelligent.

It’s the truth! I read it on Facebook!

Even while working for the church, it was not unlike me to color up my communication within the church walls with a s***, d***, a**, or maybe even an F-bomb for appropriate emphasis.

Yes, I pray constantly for forgiveness.

Additionally, though, I do think God has a fabulous sense of humor along with His overwhelmingly generous willingness to forgive: I have 42 years of anecdotal evidence of this.

Anyway, this webinar got to me.

Five hundred dollars later, I am super-psyched and spilling over with enthusiasm about my new, badass self!

This course is supposed to take about eight weeks to complete, but I am almost 1/3 of the way in after three days.

Why?

I can only explain it as God’s leading and prompting.

I am officially rebranding myself as Karin LaMothe, Fierce Lyme Warrior.

Now, just to be clear: I am not letting my illness define me or own me; indeed, I am simply making peace with my new DNA and using it to provide hope and inspiration to other fellow Lymies fiercely battling this disease.

Must we be martyrs, lonely and without hope?

No, we need fellow warriors to give us hope and to share with us to keep our fears, hopelessness, and struggles from taking strongholds.

Little kids in hospitals get visits from super heroes.

Who is to say Lymies could not benefit from someone in their corner, as well?

Can you picture my caricature?

Yes, I WILL wear a cape, and, yes, it will be green (not sure which shade).

No, I will not require an eye mask to protect my identity, but, yes, my dream outfit is quite similar to Wonder Woman but in bold shades of green.

If the Wonder Woman theme does not work out, perhaps it will be like Tinkerbell but with a She-Ra/Ninja Warrior twist.

I may even have a green stripe in my hair. Not sure on that just yet.

I do not have many other details to reveal for now.

Will I speak, sell things, or visit sick people?

I am not sure just yet.

REMEMBER, I still have 2/3 more of my branding campaign left to go!

I am not feeling led to wear a super hero outfit for reals (except maybe on Halloween), but maybe that will change.

My sister sews amazingly well, and perhaps I will honor my inner super hero and sport it out to Lyme events.

Who knows?

What I do know is I feel more alive, creative, free, and happy than I have felt in years, and I thank God for that each moment.

Thank you to everyone who has been praying with and for me on this journey.

By no means is my journey or struggle over yet, but I am well enough to know it is now time for me to be helping others and paying it forward.

God bless!

Holy Electromagnetic Frequencies, Batman!

photo-1425009294879-3f15dd0b4ed5Status Update: It has officially been two weeks since I have begun coursing electromagnetic frequencies through my body on a daily basis, and all I can say in my best Robin voice is, “Holy electromagnetic frequencies, Batman!”

This past week has been miraculous: I have officially and successfully cut my daily steroid dose in half (without triggering an adrenal collapse!), and I have biked over 42 miles around the island.

Woo hoo!

Additionally:

I am no longer taking any anxiety medication, AND
I am only using my pain gel medication on my swollen lymph, AND
I worked four days last week while standing on my feet, AND
I feel better than I have felt in over a year.

One year ago to the day, I collapsed; today, I am celebrating!

I am celebrating:

  • Being alive.
  • Overcoming insanely obnoxious obstacles.
  • Having overwhelming faith.
  • Finding God’s strength in my weakness.

Some days, even with all I have faced this past year, it is easier to feel sorry for or to minimize myself, especially when comparing myself to others and their lives.

Why do I do that?

I know it is human to do so, but, man, it sure sucks the air out of the room, right?

While I would love to be completely healed and be operating at 100%, I also know that God has me in this exact place at this exact moment for a reason.

It is only when I am not focused exclusively on Him and listening and looking for His guidance that I get swept up in the Tornado of Crazy, and up, up, and away I go!

These moments of self-doubt and self-deprecation are actually just gentle reminders from Him that I am veering off-track.

I simply need to do some course correction back on to the path He is laying for me.

“Follow the yellow brick road! 
Follow the yellow brick road! 
Follow, follow, follow, follow,
Follow the yellow brick road!”

It really is that easy to get back on track.

He redirects me in such funny ways, and now that song will be stuck in my head for the next several days!

So what do I need to say to be complete about the past year?

Usually, I complete this exercise with my husband annually on December 31.

We discovered this completion exercise from Tim Elmore, President of Growing Leaders, which is a leadership organization.

Check him out at Growing Leaders!

I am working on these nine questions now:

  1. “What are my fondest memories of this past year?”
  2. “What were the big projects I completed during the year?”
  3. “What were the defining moments during the last year?”
  4. “What did I procrastinate on and fail to get done?”
  5. “What books and mentors had the greatest impact on me?”
  6. “Am I closer to my friends and family from my activities this year?”
  7. “What will be my biggest goals as I move forward into next year?”
  8. “Where did I neglect to live up to the standards I set for myself?”
  9. “What am I committed to do this next year to fulfill my ‘Life Sentence’?”

This exercise is not about comparing myself to others; indeed, it is about being the best ME I can be.

This past year, I have had struggles, obstacles, losses, and “issues.”

While I may have missed the mark I set for myself and disappointed many people this past year, I need to acknowledge I have truly done my very best.

Life is not about comparing myself to others; it is about me fulfilling my purpose.

I am going to leave you with one of my very favorite poems, which was penned by Mother Teresa:

People are often unreasonable, illogical, and self centered;
Forgive them anyway.

If you are kind, people may accuse you of selfish, ulterior motives;
Be kind anyway.

If you are successful, you will win some false friends and some true enemies;
Succeed anyway.

If you are honest and frank, people may cheat you;
Be honest and frank anyway.

What you spend years building, someone could destroy overnight;
Build anyway.

If you find serenity and happiness, they may be jealous;
Be happy anyway.

The good you do today, people will often forget tomorrow;
Do good anyway.

Give the world the best you have, and it may never be enough;
Give the world the best you’ve got anyway.

You see, in the final analysis, it is between you and God;
It was never between you and them anyway.

Love one another!

See you next week.