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.

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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.

Pick a Fight & Take a Stand, Crazy Woman!

Who’s ready to RUMBLE?!

When we go ALL IN for God, Batterson tells us in his book, All In, that we are to Pick a Fight, but this is not in the usual sense where we start calling names and throwing punches.

Scrappy Doo with his signature battle cry, “Let me at ’em! Let me at ’em!” will not work for God.

Indeed, God wants something much bigger from us.

Instead, when we pick a fight, God wants us to get down on our knees and to pray fiercely, for we are picking a fight with Satan.

I really don’t like Satan.

In fact, I hate him.

Let me rephrase that: I mean, I loathe him mightily. (My mother did not like us to use the word hate when we were growing up, as if a more civilized word is ‘loathe.’ Ha!)

Satan is VERY threatened by me.

How do I know?

He has spent the past few weeks stirring things up everywhere that matter most to me.

This week, my All In book has gone missing. Funny, right?

I am supposed to be summarizing the book about Picking a Fight, Taking a Stand, and A Little Crazy. 

Because I do not want to misrepresent this book while summarizing, I am going to shift from completing the book summary to writing in my signature Karin-style.

In addition to the book now missing, my past few weeks have been filled with lots of physical pain from my fibromyalgia/Lyme inflammation, a new alarming health concern for my daughter, and significant attacks on my character.

This is reassuring!

Say what?!

It means I am up to something good for God. (Insert smiley face.)

I know this is the case because Satan rages like this and attacks me when I am gaining some traction and making some headway for God’s kingdom.

I have “been there and done that” when it comes to Satan and his vicious attacks.

You should have seen my life when I worked in the political arena.

Yeah, that is where A Little Crazy comes in for me.

It was a constant public attack in the local rag newspaper: one-sided garbage ruled the day, and it was only ever partially accurate.

So, in case you were wondering, I am an unsuccessful loser.

Don’t ever let me forget it!

Tons of fun!

I highly recommend public life if you would like to learn how to gain some muscle in experiencing personal attacks.

I was only one of 100+ victims through the years, but it was still personal and painful.

Yippee!

Whenever I would be contacted by the editor for a personal quote, I had the most amazing fun somehow finding a way to mention God to give Him all of the credit.

My friend Andrea and I loved keeping a running total to see if my God comments would make it into the paper.

We would text one another whenever I was under attack in the paper with the most recent running score: “God: 2, Satan: 3.”

Then, whenever my praise for God would get into the paper, the score would change in our text exchanges: “God: 5, Satan: 4. Woo hoo! Go, God!”

I can see the blessing in having been attacked publicly before because my muscles are so much stronger now when it comes to keeping Satan’s attacks from stopping me.

I have definitely picked a fight with Satan by starting my blog.

I don’t know if my inner strength is mixed with wisdom, or if my inner strength is mixed with reassurance that, “My Heavenly Father can kick your butt! Na na na boo boo! God: 1,000,000, Satan: 5.” Amen!

Either way, get over it, Satan.

Go back to hell where you belong.

I am not afraid of you.

My prayers are even more passionate and powerful now, and they make me stronger with every word I pray.

I will continue to pray without ceasing in order to be unstoppable on my mission for God.

I declare that with every breath I breathe in God’s mighty power and strength to overcome any vicious attack, and I breathe out any and all fear, dread, or disappointment.

Satan knows I am going to heaven because of my faith, but he wants to make it hell on earth for me.

The same is true for everyone who believes in and follows Jesus.

Hmm.

I am not frightened, because I am a warrior who has taken a stand–the Lord is on all sides protecting me and in my heart giving me courage.

Am I a little crazy?

My blog is about “My crazy life.”

It is kind of difficult to have a crazy life if you are not a little crazy…


 

 

 

Time to Blaze a Fiery Trail

On October 29, 2015, I was hospitalized for an adrenal crisis.

It was a long time in coming now that I know how to listen to my body and recognize the symptoms of adrenal fatigue.

I had burned my candle at both ends for far too long, and my body literally collapsed as if to say, “I’m out!” (Fade to black.)

My diagnosis of adrenal insufficiency came just fifteen days before my brother’s tragic death, so to say I ended 2015 as a hot mess is a gross understatement.

I was a flaming hot mess.

Over the next several months, I had umpteen visits to numerous doctors and specialists.

I received a fibromyalgia diagnosis, lack of consensus by several doctors on whether or not I had a mini-stroke, treatment for listeriosis from eating contaminated bagged lettuce, and confirmation of chronic Lyme (I was first diagnosed with Lyme in 2013).

I have been through the ringer a time or two this past year, and I have the scars to prove it.

I was heading for a full KO, or so I prayed.

I have begged God over a dozen times (sometimes in a given day) to let me die and to take me from my misery, but He either totally ignores me (and that is TOUGH to do), or He has a different plan for me.

As it has been the better part of a year since my initial collapse, I am settling on the fact that God has a different plan for me than an immediate departure.

Good news: I am no longer looking for a Thelma and Louise escape off a tall cliff.

Now that I have acquired some self-acceptance of my health issues, as well as a return-to-normal of most cognitive brain functioning, I am looking at life from a different vantage point.

Getting so close to daily glimpses of my possible demise caused a fresh, new perspective on life to be exposed, and a different me has now emerged.

Not a new and improved me, but a different me.

I am different from the inside out, like I have been shaken up like a puzzle in a box and put back together: I have all the same pieces, but they are in a different order.

The puzzle pieces could not go back the way they were inside of me; the pieces had to be re-organized.

Like un-birthing a baby (“Not a flippin’ chance that’s ever gonna happen, no way, no how!” says EVERY mother I know);

or un-molting a grasshopper;

or un-metamorphosing a butterfly or a frog;

I cannot go back to the way I was.

Now that my eyes are fully open, I am getting the most spectacular, awe-inspiring, breathtaking glimpses of what is possible and why I am really here.

I am on a mission, here to blaze a God-inspired, fiery trail, and nothing can keep me from fulfilling that commitment (except death, of course, but I am NOT afraid of death; Death and heaven are just a beautiful promise of what is to come).

In reflective moments like this, I realize that before I had this ongoing day-in and day-out brush with my mortality, I was alive-but-dead, going through the motions of life, existing but not living my life for the reasons God put me here.

How can I explain it?

It’s like I’ve been launched like a rocket, and my incredible speed and urgency prevents me from focusing on anything but the mission.

Like a two year-old, I now question the importance of everything that used to waste so much of my energy:

Why?
But why?
Why not?
How come?

And then, comical as it sounds, I burst into song, “Let It Go!”

Like a Disney princess, I spin and dance all around in my kitchen, or living room, or dining room, or shower, or bedroom, or wherever I happen to be when I realize I am getting pulled away by unimportant matters.

For those of you who know me, you absolutely get how ridiculous this looks, but you know better than to ask me if I care! (You already know that I don’t.)

Yes, even in the Jeep with the top removed, the doors off, and the volume turned all the way up, “Let it Go!” is on repeat, replaying over and over and over.

The more wind blowing through my hair the better!

So, what in the world do you want me to do for you, Lord?

Calm, laser-like focus is now my method, unlike the hysterical, frantic, anxious, super woman I once was, trying desperately to prove I can do 5,347 things at the same time.

It’s amazing how differently the world appears now that I have a one-track mind and no time to waste.

Opportunities cannot be missed.

My conversations are important.

Relationships are cherished and honored.

Actions are key.

Things that once consumed my precious time are now trivial; like white noise from a fan, I choose to block them out.

[Insert heavy sigh of relief.]

I have found that I have little to no patience with structures, rules, chains of command, people, or other ego-driven conversations that serve only to squelch, silence, sabotage, or stop me from staying God-focused.

I realize that I do not fit in (and, most likely, I never did), though I had tried to by wearing down my 90 degree angles of squareness to fit into the round holes of society and its norms.

“Wake up!” I want to scream at everyone, but then I remember my sweet, kind, loving, older brother pleading with me to “Wake up!” just months before he passed away, and I realize that people will wake up when it is their time to do so.

It is all part of God’s perfect plan.

So now that I am awake and focused on hearing my God-inspired mission, I need to ensure I use my spiritual gifts, talents, and passions.

Do you know what your spiritual gifts are?

If not, find out now. Don’t waste another moment.

God has a mission for each one of us to fulfill, and we are to use our God-given gifts, talents, and passions to do so.

This doesn’t mean we won’t face failure and disappointment, but He will walk with us, and guide us, and mold us, and love us through it all.

My dear friend, Beth, recently gave me a t-shirt.

The back of it reads, “Don’t ask yourself what the world needs. Ask yourself what makes you come alive, and go do that. Because what the world needs is people who have come ALIVE!”

Don’t you just LOVE that?!

God, I am listening.

Tell me what is next.

Lord, I’m ready now!

Whose Life is this, Anyway?