sorting through the options

 I saw a new Natropathic doctor yesterday.  I went to see him because my Christian counselor suggested the possibility of neurofeedback helping others with similar issues.  I had a brain mapping done last week and was seeing the doctor yesterday to see how many treatments he would suggest for me.

He actually never answered that question.  At the time what he said all made sense to me, but now that I look back it feels like he wants to delay it so that he can become my primary care doctor.

He took my history and looked through my labwork.  He's the first Doctor to diagnose me with Lyme.  Up to this point it has just been my nutritionist using her Asyra machine. (which was amazingly accurate). He believes that Lyme is a pandemic and should be addressed even over COVID...which is currently where everyone is focusing on.

He said based on my symptoms, my history and my labwork  I have chronic Lyme.  He wants me to do what my other Natropath recommended...Cowden Protocol.  I bought it previously, but then when Jane tested it with the Asyra machine she said I didn't test well for any of it and that it would all make me sick (which is what I felt at the time before she started treating me).  One of the big issues with Cowden is that it's about $300 a month.  Ugh.  After 3 years of chasing after symptoms we've depleted our savings.  Our insurance won't reimburse supplements.  In my gut I also don't want to feel worse before I get better...which is what most Docs treating Lyme will tell you needs to be done.

I will continue to give Jane's treatment (my nutritionist) and her protocol a full year before I seek any other path of healing for this chronic infection.

It's fascinating to me to consider that I have a chronic bacterial infection that won't go away.  What other types of bacterial infections follow you long term like this?

The results of my brain mapping showed that I had a small amount of anxiety and depression showing (which he said is common due to the effects of this longterm sickness).  He also said my brain looked "tired and fatigued", that it's hard for me to focus for a long time on something as my brain gets tired.  i absolutely agree with that.

I'm going to take the fact that he won't start me on neurofeedback as a sign that I just shouldn't do it and that God in His providence has another path for me.

One thing that's hard in this is that so many people have so many different opinions.  My first Natropath suggested the "true cellular detox".  My second Natropath put me on biocidin, itraconazole as well as a few other things.  This doc wants me on Cowden. He says that the success rate on Cowden is extremely good...something like 80% of his patients get 80% better.  The thing I would say about that is that I know three women who have all done the Cowden and it didn't help any of them (some of them were his patients).  I'd feel better knowing people who have done it and actually had success with it.

For now I'm off to resting as this morning has wiped me out and I have a big day ahead of me (teaching 2 piano students and going to my son's performance tonight).

But you look normal!...

 One of the biggest struggles I've had in this journey is feeling understood.  Shoot, I often don't understand what I'm experiencing or why. I've gone through seasons when I desperately wanted people to understand how hard this is.  People listen and then say "but you look normal...you look good".  

I feel like if I had a different diagnosis people would get it and the support would be there.  People understand cancer and often do all they can to support that...but this mysterious unseen sickness?

The best way I can describe it to others is to think about how you feel when you have the flu.  Somedays you have fevers, body aches, headaches, dizziness, fainting, back pain.  Most people recover within a week or two weeks.  Now imagine that you feel like that every day to one extent or another, without relief for 3 years.  After a while you struggle with feeling like you can keep fighting.  Simple things like showers or making a meal feel impossible.  You have no source to draw your energy from...you're simply exhausted.

I thank God that He has not asked me to walk this journey alone.  I have a community of beautiful women all walking through the same struggle, except all of them have walked it longer than me.  I cannot tell you how wonderful it is to call and be able to talk through symptoms with them so that they can assure me it's all part of the process.

My hands are empty.  Before I had a full life...traveling, being active, invested in a wonderful community, keeping busy with things that filled my heart and my life.  Now I've had to empty my hands of all of that...surrendering it to my Saviour and trusting He can use this time in my life that feels so wasteful and meaningless (to my limited mind).

I have to struggle with feeling like a burden to my family.  My health has drained our savings.  My husband is constantly having to drive me to doctor appointments.  We have to be frugal in every other way so that I can continue my treatments.

My son asked me at one point if I was going to die from this.  As I lay in bed that day I told him that" I don't know, but that we need to trust God in the midst of this".  It's painful to see the way my health affects his life.  Thanks to COVID I can't go to his school campus, but even if I could I wouldn't be able to.

Most days I can try to do one thing a day.  That's it.  If I do more than that I'm exhausted and often feel worse the following days.  So one thing it is.  Thankfully I've been able to add 3 piano students back into my schedule ( I didn't feel well enough to do even that for many months).  On those days that's all I can do.  

I miss being out and about.  Having the energy to be able to ask how other people are doing and really listen and invest in their lives.  To be able to serve them without having to consider how my body will do in the midst of it.

I miss being able to travel.  Living 9 years oversees was a grand adventure.  Not all of it was good, and in fact in many ways it's much harder...but there's a sense of being "alive" living overseas that I have not experienced stateside.

I have had to teach myself to not care if people "get" my sickness, but it's hard.  I look at pictures of myself and ache for days when I can feel whole and complete again, fully alive in my body.  That might not come this side of heaven, but I'm thankful that I can rest knowing that someday I will be able to run and laugh and live life without pain and suffering.

help along the way

 here are some fantastic songs and talks that have helped me along this path of longsuffering...

Shane and Shane's "Though you slay me" featuring John Piper

Here's a great one from Joni Erickson Tada

as well as Vaneetha Riesner and how God meets us in suffering

Last but not least, Katherine Wolfe's story...

 

 

falling face first into the mire

 June 2018 marked a significant shift in my life.

We had just returned from teaching overseas for a year in Morocco. 

 I had taken on a full time art teaching job.  

We had bought our first home and worked whenever we could to renovate it.

My dad had died from cancer while we were living in Morocco.

We had moved every year for the last 6 years from different states or countries (Kuwait to Oregon.  Oregon to Arizona.  Arizona to Morocco.  Morocco to Arizona)

I thought God would give me the strength to supernaturally continue to push my body to accomplish all of these things and keep serving, hosting, traveling, pouring my life into others, etc.  I thrived on being in relationships, investing in students, hosting bible studies, hosting neighbors for tea and coffee times, organizing trips to spend time with others, etc.

The first day I arrived in Arizona I landed, looked at a house and spent the night doing the paperwork with my realtor to bid for what became our home.  My husband and son were still in Oregon.  The following day I started my teaching job.

Looking back I gave myself no time to decompress, to unpack all of the changes and traumas that we had walked through in the last years.  I didn't know how to grieve well.  Loosing my dad to cancer was something unlike anything else I had experienced before and I didn't know how to put in words what I needed.  I think I just shoved it all down and kept going...because I thought that was what I was suppost to do.

I'm thankful that I did get to see my dad before he died.  He called us while we were living in Morocco and told us the doctors said his cancer was terminal.  Within the week of hearing that my son Phoenix and I were on a plane back to the states to spend 3 weeks with him.  I decided it was better to spend time with him while he was alive and clear minded then to be able to be there for the funeral.  When he died I watched the funeral over skype.  I'm glad for that, but I'll admit I wish I could have been there in person to hear peoples thoughts and to grieve with others.  I was sad that I received no sympathy cards.  I'm sure my mom received them for our family, but I didn't get to see them, read them and allow my body to process the grief and the support others offered in our time of grief.  That was hard.

Towards the end of our time in Morocco we went to the beach with another teacher to enjoy the shoreline and just sit.  While we were there we witnessed a man drown.  Several people tried to save him, but he pushed them away.  At one point he even put his thumbs up like he was saying "everything is just how I want it to be".  Then he went under and never came up.  For a long time that thought kept ruminating in my mind...I couldn't understand why anyone would want to commit suicide....why anyone would refuse help.  In working through this with my christian counselor recently I had this beautiful image of Christ standing beside me and saying "it's okay, I'm with you.  This is part of my story for you, for him, for Phoenix and all the others watching this". 

 I was the art teacher and yearbook advisor for two campuses...over 500 students. It took a lot of mental energy to learn the students and all of the staff's name,engaging both campus situations well, as well as keeping things sorted at each spot.  I also wanted to do a "good job", so I pushed myself to excel.  My body didn't have time to recover on the weekend as we kept working hard to fix our "fixer upper" home.

In that year of teaching I had 3 panic attacks.  One at the beginning of the school year, all of them while I was driving on the interstate.  When if first happened I didn't understand what it was.  I kept repeating "For God has not given us a spirit of fear, but of power, of love and of sound mind".  Towards the end of the year the stress of it all was starting to catch up with me.  I remember thinking that I wasn't handling stress as well as I use to be able to.  The last 2 panic attacks hit while I was driving home from teaching, so I asked a teaching friend if I could carpool with her and she would drive me.  The last week of school I barely made it.  My brain was in such a fog and I had a sense of terror of not understanding what was going on with my body, and why I couldn't fix it.  School ended and we traipsed off to Indiana to spend a month with my mom in Indiana, and a month with Hamlet's mom in Oregon (as was our custom between school years).  I thought I just needed to rest and recover, that I was just burnt out.  I slept and rested a lot that summer.  As the school year was approaching I was concerned as I still didn't feel well enough to teach again.  I took "family medical leave" from teaching hoping that I would recover quickly.  I worked with my natropath, doing everything she recommended to me as I thought I would get better fast.  I believed I had "adrenal fatigue".  Here's a list of what I documented my symptoms as... severe fatigue, mood issues, headaches, muscle tension, shakiness in the AM, inability to focus. My doc put me on the True Cellular Detox supplement plan ($3,000).  She told me that it didn't matter what I was "diagnosed with" and that she wanted to heal my cells and that healing my cells would fix everything else.  I did the detox program for probably 9 months.  I did infrared saunas as often as possible.  I did 20 chelation treatments for heavy metal (as my lead levels were really high) ($3000).  I did about 10 sessions of Ondamed biofeedback ($450).  I tried to fast for most of the day (eating between 11am-6pm).  I watched a ton of Dr. Pompa cellular healing TV.  It took 2 years, but I was slowly seeing improvement.  I was able to teach piano/violin lessons again and was driving again (although as little as possible).

In Feb. of 2020 I had oral surgery to remove "cavitations", believing that this was an important step towards fully healing.  This was something I heard multiple times to do.  The thought is that many people have "caverns" in their jaw bone from when their wisdom teeth were removed...and how often it's not removed properly and so the bone doesn't regrow and the spot fills with nasty things (parasites, viruses, bacteria) and becomes a low grade infection...you don't feel any pain, it just pulls from your immune system.  I don't have a lot of experience with surgery so I went into it with no medicine to calm my brain.  As I heard them drill into my bone I realized that my body was in very high alert.  My fingers were clawing the chair and my muscles were so tight.  Ugh!  If I ever do oral surgery again I'm for sure going to take medicine so I'm not awake and can't remember the sounds and feelings of it all!  After the surgery I felt okay overall.  The next morning I woke up to prepare breakfast for the boys (we were hosting a Japanese International student at the time as well).  My teeth were very "sweatery" because I couldn't brush my teeth the day of the surgery...so I went in the bathroom to brush my teeth.  It didn't occur to me not to use my battery operated toothbrush.  I had read all the instructions well and nothing was mentioned about this...but as soon as I placed that toothbrush on the bone and turned it on my brain started spinning.  I knew I was going to pass out.  I tried to make it to the bedroom before I collapsed, but I remember only making it a few steps.  I woke up on the floor, half on/off the tile floor.  Hamlet said he heard my shoes hit the door when I fell.  I probably wasn't out for long.  I woke up sweating, and exhausted.  Hamlet took the day off to take care of me.  I struggled to recover for about a week and a half.  About 10 days after the surgery I started to feel markedly better, so I remember trimming the bougainvillea bush and hosting my friend for a visit.  The next day we went to church as usual.  Half way through the service I started feeling really off.  I didn't get out of the bed the rest of the day.  We were suppose to host a gal from church for lunch that day and we had to cancel.  The rest of March is a blur.  I spent most of my time sleeping or trying to sleep.  I could barely get out of bed.  I had to hold the wall to get to the bathroom and taking a shower or even getting up to eat would be exhausting.  I felt awful.  Sometimes I wondered if I was dying.  Sometimes the only relief I had was when I was sleeping.  We had paid for a week at a resort by Disneyland so we decided to go ahead and drive there.  I was exhausted and struggling with anxiety.  The boys went to Disneyland for just about 5 hours or so before they came back to check on me.  I was a mess.  We stayed one night and then drove home.  I was barely eating.  I lost about 20 pounds in March.  My stomach started to sink in (which in a healthy body would be great, but in this one I knew it was a bad sign)  Once we got back we went to the natropath and asked for a full panel of bloodwork to be done so we could figure out what's going on with me. Initially she told me she thought I had ovarian cancer based on my high C4A level. (thankfully that was later ruled out after multiple visits to my OBGYN and a biopsy. (It's hard to have times where your brain has to process the possibility of cancer and potentially worse sickness when you are already sick to begin with.) She started giving me "ozone therapy" ($150 each time) where they pull your blood out, pass it through a machine, expose it to ozone, and then push it back into your body.  She also tried "meyers push" vitamin injections.  My natropath though that giving me daily meyers pushes for 10 days would help put whatever I had into remission.  I passed out during one of the injections as it was a new tech person and she had to try 3 times to find the vein (and each time it really hurt!)  I also hadn't eaten that day and later I was told injections like that are strong so you have to eat before you do it. (I thought that fasting was suppost to help me heal).  I felt terrible all day.  I was exhausted and scared by how I felt.

After the passing out experience I decided I needed to try working with a new doctor as I wanted to feel safe with whoever was going to give me the injections.  I started seeing a functional doctor.  He ordered bloodwork and discovered I had mold poisoning (ocratoxin A).  Toxic levels of mold have taken up residency in my body.  Mold can cause scary symptoms...many of which I have.  He also discovered I had a systemic yeast infection. My lyme bloodwork from Igenix showed positive bands but not enough to be officially "diagnosed" with lyme by him.  I worked with him for several months before starting to see my nutritionist.

Jane is a nutritionist that helped my college roomate "Sib" go from being bedridden and having seizures to fully functional and out and about in the world in about 2 years time.  I started seeing here in July 2020.  She has an Asyra machine that scans your body systems and is shockingly accurate at diagnosing things.   Here is what I discovered I had according to the machine...

my central nervous system was shot! (I've been in fight or flight for many years), I wasn't getting REM sleep, I was very deficient in Thiamine, I have a parasite, I have mold toxicitiy, I have liver issues, I have low testosterone, a virus that causes boils, I have Lyme and the levels were really high, I need iodine, I have exhausted adrenals, I have toxic radiation levels, my red blood cells are too small, I have heavy metal poisoning, oxidative stress, I have toxic levels of pesticides, insecticides, I have histamine issues.  UFTAH!  I had paid thousands for testing up to this point and seeing here cost a mere $90 dollars and she could see all those things!  From that point forward she has been my point person to direct my care.  I love that she can test supplements directly to my body.  I took all the supplements in that my doctors had prescribed to me and about 75% of them were actually harmful for my body and not helping me heal at all! (and had cost a ton of money too!)

After a few months on her supplements here what the machine said...I had severe fatigue, my hypothalamus looked much better, I had blood flukes in the liver, yeast was showing, my cortisol levels were down, my allergens (mold/yeast) worse than before, my lyme levels were 62/100 (improving! as 50 is a good level),  I had polarity disturbances in my cells,  I had molybdenum shortage.

I saw here again in December and she said there was significant improvement!  My total numbers that came up were 112 (and she said a "normal" person show about 100.  I'm having digestion issues, the fatigue and exhaustion is still there, my liver is at a great number 59/100, there some issues with my veins/arteries/heart.  I'm low in electrolytes,

I am scheduled to see her again in April.  In between visits it feels like forever sometimes as my health comes and goes...

An answer to prayer is that I've started working with a christian counselor.  She has done EMDR with me for several traumatic memories.  First with the drowning incident in Morocco, and just this week with a traumatic driving memory (driving 6 hours in the mountains of Oregon on black ice).  I think EMDR has been really helpful and I'm super thankful to get the opportunity to go!

Something I'm looking into is also the possibility of neurofeedback.  I had my brain scan on Tuesday and will see the doctor next week to see if it's something that can help me.

I was introduced to DNRS (Dynamic Neuro Retraining System) from a friend who's been diagnosed with chronic lyme and has been sick like me as well.  Basically the gist of it is that a traumatic event caused the body to fall sick, but that the lymbic system in the brain is keeping the body sick, telling it that I'm still in attack mode so I'm constantly inf lammed instead of resting and digesting.  DNRS has specific exercises to do for your brain for an hour daily to help retrain your brain.  I was faithful for a while, but it's been difficult to stick with it so I have fallen away from daily exercises.

My biggest disturbing symptom is the "weird brain" I've had often.  It's as if my brain glitches.  I can tell when my brain is clear and when it's in the "weird brain" state.  It's both frustrating and scary as I can't stop or redirect it...I just have to wait for it to pass.  Hence the reason I don't do much away from home or alone as I never know when it's going to hit.  I also don't drive (unless it's in the neighborhood) as I don't know if the "weird brain" will hit while I'm driving and I don't want to hurt myself, my family or anyone else so I don't trust myself to drive most days.

I have almost daily lower back pain.  I don't know what causes it, though I also know I'm not very active at this point.  On my good days I'll take a walk for about a half an hour but that's it.  Sometimes I'll get super sleepy, almost like I'm drugged.  I wake up feeling groggy and out of it.

Some mornings before I'm fully awake I feel oppressed with dark and heavy thoughts that cycle in my brain.  Once I'm awake enough I can take those thoughts captive...but what a yucky way to wake up.

I struggle to have joy in my life.  I has to be a very conscious choice.  What brought me so much joy before in my life is now too much effort.  I've stopped making art, I've stopped playing the guitar.  I've stopped journalling (which I hope this blog will remedy).  It hurts so much to be ill like this for so long that I've tried to just stop feeling...blocking out both the good and the bad. My counselor has encouraged me to try my hand at art again, but I don't want to push myself...art has always been an outlet and a joy and forcing it doesn't seem right.  It's been a long time since I've felt inspired.  Everything just feels dried up.

I'm keeping this blog so that I can allow myself to process and journal the events and possibly encourage another sojourner who's walking in the mire themselves.