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.
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”
I must have somehow thought that was what the 7mm lesion was, but it wasn’t.
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.”
“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.
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.
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.
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.
People diagnosed with Lyme by a Lyme-literate doctor are fortunate.
Well, fortunate at least to finally identify the monster living within they must now attempt to kill.
Yeah, I do think that is the best way to say it, even though chronic Lyme is apparently only manageable, not “killable.”
AND even that can be debated, as, according to one of the best hospitals in Michigan, chronic Lyme disease does not exist.
This would be one of those times when I will not mention the name of the hospital whose staff laughs condescendingly at you and dismisses your intelligence if you mention you have been diagnosed with Lyme disease, even if you show the positive results of your bloodwork (I am certain most hospitals in Michigan have the same opinion, anyway).
We need not go in to that right now, as the argument I had with the doctors regarding Lyme was not pretty…
Let’s just say a legion of pit bulls came charging out of me.
This all happened when my husband, Shawn, was admitted into the hospital because he was dying from a systemic yeast infection from the antibiotics he was taking to treat his Lyme.
He did not die; in fact, he has lived to tell about it.
Yeah, not one of my better moments, but remember, I detest bullies, and I am a raging Mama Bear when it comes to people messing with my family.
I will not be running for office ever again, so I am not concerned if my raging rant was caught on tape.
When Shawn was diagnosed with Lyme, his main symptoms were urticaria angioadema and extreme anxiety.
My symptoms were horrific neck pain, fibromyalgia, migraines, vertigo, extreme anxiety, and a never-ending case of shingles on my optic nerve.
Same disease, different immune system response.
So, just how have I been going about trying to kill (aka. put into remission) my Lyme disease infection?
I have been on oral antibiotics for over six months now.
I have also received ten not-yet-approved-by-the-FDA ultraviolet light IV treatments (aka. “UVLRX”).
My bloodwork did not improve, though I felt significantly better afterward.
Following those treatments, my doctor started me on an anti-parasitic antibiotic, which seemed to be working well, but my insurance refused to pay for it after two months.
Why? Well, remember, “Chronic Lyme does not exist.”
Then I attempted a new antibiotic, which almost killed me.
Turns out, one of the side effects of that med is it prevents the steroids I take for my adrenal insufficiency from working.
Yes, I am a bit complicated.
That was when I became suicidal and thought, “Hmm, I am just going to let this med take me out.”
Yes, that thought went through my head, as I was in unbearable pain, had no time left on my short term disability, and did not see any light at the end of the tunnel.
My adrenal crisis last October brought about a quick journey into unconsciousness, so I was hopeful this med would lend a similar and speedy decline.
It was more like torture waiting to die, unfortunately, as I got weaker and weaker day by day but still woke up each morning.
I guess this is where my lack of patience actually helped me for once: I grew impatient waiting for the med to kill me.
There must be a zombie deep inside me, because each morning I still had just enough strength to stay alive and to mourn my existence.
I finally gave up and thought, “This dying crap is taking forever! I guess I should call the doctor.”
My doctor placed me on a new supplement, which has trace amounts of viruses and bacteria that serve to strengthen one’s immune system.
Yes, Lyme patients WILL try just about anything that might work (if we can find a way to afford it).
Surprisingly, I have felt quite well on the new supplement.
Though it is not cheap, thankfully it is available over the counter, so I am not threatened by insurance coverage issues.
My chiropractor, who practices kinesiology, also uses laser technology, which has helped significantly with my lymph drainage issues (my lymph gets clogged when the bugs die off and toxins build up).
Now, I am on to my next healing adventure.
I bought a Doug Coil Rife machine.
It is a super-powered machine with three large and heavy components; it basically looks like a computer from the 1980s.
I hold on to a copper coil as I set the controls on the amplifier to send energy frequencies through my body.
This freaky thing goes through bone, the blood-brain barrier, walls…
You must keep all electronics at least eight feet away or they could blow up.
I accidentally left my emergency alert bracelet on the other day when I started a treatment, which never touched the copper coils, but it got so hot it burned me when I took it off!
Have I noticed a difference in how I feel?
Look up information on the Rife machine.
It is fascinating how the FDA crushed it, making it illegal for doctors to use to clear all kinds of dis-ease.
Diseases like Epstein Barr, cancer, candida, fibromyalgia, multiple sclerosis, HIV, arthritis, asthma, diabetes, depression, diverticulitis, gout, lupus, migraines, epilepsy, hypertension, and Lyme, just to name a few…
The list goes on and on.
I understand if a regular MD gets caught owning or operating one of these, he/she could lose his/her license.
I am not an MD.
If anyone reading this blog wants to come over to use my rife machine, let me know.
I like to think of myself as a Rebel With a Cause.
Maybe this is part of my new cause: to give people access to treatment they cannot find elsewhere, so we can get healthy and strong to live out our God-given missions together.
As for now, I have a ten-mile bike ride to complete before the sun goes down.
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!
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.
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.
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…
Yep, that’s me.
“All Balls” is what my good friend Jeff calls me because I have a consistent track record of jumping before weighing the complete, rippling impact of some of my most abrupt decisions.
Have I ever regretted that?
Certainly, I have thought, “What was I thinking?!”
On the flip side, though, I learn by action.
It’s how I grow.
It is how I continue to strengthen my courage to take on bigger and bigger giants.
It’s how I feel alive.
Do I have fear in those moments?
Absolutely, but my faith in God is bigger than my fear.
God has had my back in way too many battles to let my fear keep me from charging full force into something that lights a fire inside of me.
I get bored very easily if I am not up to something new or something for which I have a ton of passion.
That is why reading is a good distraction for me; I don’t get into trouble when I escape to the world of books.
Not only do I love to read, but I also love, Love, LOVE books.
I have a library of books that takes up an entire wall of my house.
I can honestly say that I do not think I will ever purchase a digital book.
When I die, though, no library will want my books: I fold over pages, underline and asterisk meaningful passages and quotes, and fold them right in half at the binding to make them easier to hold in one hand.
Yes, I am a librarian’s worst nightmare.
A book murderer.
The book I am reading now is All In, by Mark Batterson.
I figure if I am ready to do what God calls me to do next, it would be best for me to know just what “All Balls is Going All In” entails.
The title of chapter one of All in is Pack Your Coffin.
This is going to be interesting…
“When did we start believing that God wants to send us to safe places to do easy things? That faithfulness is holding the fort? That playing it safe is safe? That there is any greater privilege than sacrifice? That radical is anything but normal?
Jesus didn’t die to keep us safe. He died to make us dangerous. Faithfulness is not holding the fort. It’s storming the gates of hell. The will of God is not an insurance plan. It’s a daring plan…
It’s time to quit living as if the purpose of life is to arrive safely at death. It’s time to go all in and all out for the All in All. Pack your coffin!”
Does that frighten you?
Man, that is so inspiring to me!
“God will test your faith. And those tests won’t get any easier. They will get progressively harder as the stakes get higher. And those tests will undoubtedly revolve around what is most important to you…
So the question is this: What do you need to give up… What is getting between you and God? What feeds your ego? Where do you find your security outside of Christ?”
It is time for God to get all the glory.
Okay, I will admit it; I am wondering what more God could possibly want me to let go of.
This is making me somewhat uncomfortable…does my past year of illness count toward that?
Can we take small steps?
May I see the playbook?
God is good at letting me know when things should come to an end, but He does not like to tell me what is coming.
The Lord knows full well that most of the things my family has endured over the past few years we would not have chosen, nor would we have wished them upon an enemy.
Well, maybe a worst enemy, but not just any enemy.
He likes to keep me present and nearby, so I am alert and conscious of every sign and signal He is giving.
I have become more patient and less forceful with this, namely because my adrenal insufficiency takes me from six (not ten) to zero in one, swift adrenaline rush.
What used to inspire my pit bull within to latch on for the good fight now gets weighed in my mind: “How much of my energy tank is THIS going to drain?”
I will continue to pray on this.
Next, Batterson says it is time to Burn the Ships!
This means that there can be no Plan B.
“But if we have the courage to burn the ships, God will part the river.”
What comes next?
Crash the Party!
“Jesus loved spiritual desperados.”
According to Dictionary.com, a desperado is: a bold, reckless criminal or outlaw, especially in the early days of the American West.
I don’t like that definition.
According to UrbanDictionary.com, a desperado (in summary) is: a law breaker.
The reason I like UrbanDictionary.com is because I like to try to keep up with the crazy slang kids use these days.
I also love the definition of Karin. (You will have to check that out for yourself!)
The Urban Dictionary definition is much more fitting in this circumstance according to Batterson’s examples:
Jesus loved that four friends climbed onto a building and cut a hole in the roof in order to have Him heal their friend.
He loved the bleeding woman who did not remain in seclusion due to her illness, but instead crawled through the streets to be healed by touching the hem of Jesus’ clothing.
He loved the woman who crashed the party of the Pharisees in order to anoint Him with her alabaster jar of perfume.
Jesus wants our repentance.
He wants our past, our present, and our future.
He wants it all.
He wants us to go ‘Holy Crazy’ by making a difficult decision, having a tough conversation, or by taking a crazy risk.
“Going all out for God always starts with one step of faith. It’s often the longest, hardest, and scariest step. But when we make a move that is motivated by God’s glory, it moves the heart and hand of God. There comes a moment in our lives when enough is enough. The pain of staying the same is greater than the pain of change. We reject the status quo. We refuse to remain the same.”
Yes, I am ready, Lord.
In the next blog post, additional items we will look at when going All In for God are:
Picking a Fight
Taking a Stand
A Little Crazy