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.

‘Shift Change’ means almost but not quite

I have been meaning to blog again for months.

I swear!

I wanted my next blog entry to be my announcement that I have created an amazing resource for people who are facing, managing, and/or coping with major health issues and their symptoms.

I have worked on this project for months.

While I do have the product ready (and over a dozen people have it for my test pilot), I have been overwhelmed with setting up my store online.

I will get to it.

Soon.

Yes, I promise.

It is called the Health Battle Warrior Battle Plan – Bootcamp.

 

In the meantime, God has me blogging today to share an update.

I am officially back to work as of March 2016; I am working for a federally-funded research branch of ob/gyn physicians, who are working to solve the issue of infant mortality in Detroit, Michigan.

These doctors are flabbergasted that I am not able to receive adequate treatment for chronic Lyme (One of the doctors is from Connecticut, and he is astounded that Michigan lives in the Dark Ages regarding this horrific illness).

While returning to work was financially necessary, I am by no means raring to go…

I manage to make it through each work day only to come home and crash; I have been able to do it again and again each next day for several weeks now (I did miss one day for hospitalization, but I will share more about that).

 

The Zithromax/Bactrim double-whammy antibiotic combo I was on for the past several months had finally begun to take its toll on my liver and kidneys.

I did a cleanse to fix that (I thought I was dying—for REAL this time).

My liver and kidneys are doing better now.

Anyway, my new and not-so-friendly round of medicine (Dapsone) requires a weekly blood test to track my methemoglobin levels to ensure I do not develop aplastic anemia (a side effect of the medication).

The most recent protocol for Lyme here in Michigan (in the Dark Ages, as you are unable to have access to meds that are proven effective for neurological Lyme issues) is to continue to rotate two antibiotics every several months (as long as tolerated) for a year without symptoms because the bacteria becomes resistant to the antibiotics.

“Without symptoms” are the key words here.

You see, I have been on antibiotics for chronic Lyme since March 2016, but I have yet to be symptom-free.

I still have ridiculous migraine headaches that nothing can touch (except more steroids), and I still fall quite a bit.

 

A few weeks ago, I was becoming confused again, and I was falling a lot.

My skin had become severely mottled; I was having small bouts of dizziness, and I was having chest pressure.

Within three days, I had fallen twice in the bathroom and burned my arm both times on my curling iron each time I fell.

My husband, Shawn, who saw me fall and burn myself the second time, said, “I did not believe that could even be possible (regarding the first time I fell and burned myself), but that is EXACTLY what you did!”

 

As these were all signs of the dreaded anemia, I called my Lyme doctor to find out my most recent methemoglobin blood results.

They emailed me the wrong ones (which showed my blood level was fine), so I figured the results were not yet back.

Wrong-o.

They had been mislabeled.

 

That Saturday, instead of going to have my standing order blood draw at the only lab that knows how to do so correctly, I went to see my primary care doctor to share my symptoms.

My regular doctor was not there, but this new doctor was very helpful and listened to me; she called me on Monday to let me know that my last methemoglobin was very high.

I knew it!

That day at work, I slipped twice and almost fell; thankfully, I caught myself both times.

After work that night, I drove to the lab to have the weekly blood draw done that I had missed on Saturday, but they were already closed.

I phoned Shawn, and he picked me up from the lab and drove me to the hospital.

 

After a “normal” EKG (They ALWAYS are!), I had my blood drawn, and I told my story, once again, about my chronic Lyme.

This time, however, it was like I was in The Twilight Zone…

 

It was just after midnight by the time my bloodwork was processed that I was able to speak with the doctor…

The ER attending physician informed me that she was from the East Coast, and asked,
“Why are you on Dapsone, given its health risks?”

I told her, “Dapsone is my last antibiotic option of the protocol, as my insurance has refused to pay for one of the medications ($2,000/month); another med was contra-indicated for me with my steroids, and I almost had another adrenal crisis; I am allergic to another of the medications; and, most recently, I had to change to Dapsone due to my liver and kidney bloodwork from my last set of medications.”

She asked, “Have you ever had the full month of IV Rocephin as part of the protocol?”

“No,” I said.

She said, “Well, we can have a picc line put into your arm in the morning and start IV Rocephin for you for a month.”

Had Shawn not been there, I would have thought this conversation had been a dream.

I looked at him and said (as soon as she stepped out for me to confer with Shawn), “Are they ACTUALLY recognizing and treating Lyme now?”

When the doctor returned, I told her, “Yes, I will stay and have the picc line put in, but may I have an IV dose of Rocephin now to ensure I do not have any side effects?”

“Certainly,” she said.

Within minutes, the med was placed.

I developed no side effects, and my headache miraculously disappeared, almost immediately.

I was ecstatic.

Shawn left to go home for some sleep, and he planned to return after my picc line procedure.

 

But then came SHIFT CHANGE.

7:00 a.m.

The day-shift attending physician came in to introduce himself.

He asked about my Lyme diagnosis, and, using my Health Battle Warrior resource, I showed him my positive Lyme results.

He made no mention of the picc line and just said, “We need to do another EKG.”

I looked at him, quizzically, and asked (failing to mask my irritation), “Why?”

“Because of your chest pain. We like to do two EKGs to compare to the bloodwork we drew earlier.”

I said, “The first EKG came back fine, and I decline repeating the test. What is the status of my picc line?”

He retorted (both laughingly and patronizingly, I might add), “You don’t need a picc line!

I told him, “The ONLY reason I have stayed here was to have the picc line procedure.”

“We will have a physician from infectious disease come in to speak with you this morning.”

“Nooooooooooooo!” Yes, I did say this in my head. Sheer exhaustion, and I was still able to refrain.

Kudos to me! I’ve come a long way, Baby!

Yep, it WAS, in fact, The Twilight Zone just after midnight at the hospital—the show ended right at 7:00 a.m. with shift change!

I had been THIS close to finally having access to a medication that has been proven to cure neurological Lyme; instead, I was coming home empty-handed (That ONE dose of Rocephin, by the way, kept my headache from returning for 36 hours!).

 

These infectious disease doctors are the same doctors who had told me that my 10 year-old son did not have Lyme (after his pediatrician extricated the tick from his ear, I might add)—His bloodwork came back positive for Lyme a few weeks later, and he was on medication for seven months.

Yes, I did yell at these doctors.

These infectious disease doctors are the same doctors who told Shawn, when he was in the ER dealing with a systemic yeast infection from his Lyme antibiotics, that he had lupus—AFTER I showed them his positive Lyme bloodwork!

Yes, I did yell at these doctors again.

Given my adrenal insufficiency, I don’t yell very much anymore—I work to conserve my energy for self-care nowadays.

I did not want to yell at these doctors again; I just wanted to go home.

I called Shawn immediately after the physician left, and asked, “Did we really talk to a doctor about a picc line?”

“Yes,” he said.

“Well, all of that is out the window now! Can you come and pick me up?”

I called in my nurse and asked to leave, declining the visit from infectious disease.

The doctor came in shortly thereafter and said, “That is fine for you to go. They phoned and said, ‘We don’t recognize chronic Lyme.’”

SMH. SMH. SMH.

I am so glad I was able to conserve my energy.

 

I saw my Lyme doctor a few days later and told him about the ER visit and the IV Rocephin.

He said, “In the state of Michigan, I will lose my medical license if I prescribe IV Rocephin to you. The state needs to pass a ‘physician-aligned health care bill.’ They just did so in Utah. They have also passed similar bills in Massachusetts, New York, California…”

I contacted LymeDisease.org for more information about other states’ bills to protect Lyme-literate physicians that enable them to prescribe medication.

I don’t know why I keep circling back to politics, but if it will help others, I am willing.

I do think this is a sick joke, God, but I will put on my big girl pants and play the game.

Am I able, physically?

I can do all things through Christ, who strengthens me. Philippians 4:13

Keep repeating it, like a mantra.

Please give me strength, God.

I am REALLY tired.

No one should have to go through this much insanity to receive treatment for Lyme.

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!