Treading Water

One question: how many times have you left your home in the last 3 weeks?  I think I've left mine 5 times.  Always to return home, back to my bed. 

Today was my monthly f/u (follow up) with my doctor.  Given how hard I've crashed and how badly I'm reacting to pretty much everything in my environment, we're discontinuing all treatment for Lyme & Co and instead focusing on MCS (Multiple Chemical Sensitivities) and basic immune support. You may be wondering what exactly this means, and you can read about it here, but briefly:

"Multiple Chemical Sensitivity; in broad terms it means an unusually severe sensitivity or allergy-like reaction to many different kinds of pollutants including solvents, VOC's (Volatile Organic Compounds), perfumes, petrol, diesel, smoke, "chemicals" in general and often encompasses problems with regard to pollen, house dust mites, and pet fur & dander."

As I stated in an earlier post, I began crashing as soon as I landed 3 weeks ago.  I have yet to really get my feet back under me.  If you've ever had an asthma attack, or witnessed one for that matter, you can imagine the reactions I've had to simple things such as candles, perfumes, animals, soaps, cleaning products, bug sprays, etc.  Some of those reactions are milder than others.  Many of those reactions are newer in the sense that I didn't react to them prior to going to San Diego but I certainly do now. 

It appears I may be regenerating from Lyme & Co (we've been wondering for the last few months) but it's too difficult to tell because I'm too toxic. 

Here's the catch with detoxing - as long as I'm living in a toxic environment it's going to be a waste of time, energy and money to focus on hard-core detoxing. 

In the meantime: I'm treading water. 

Elizabeth Chalker Contributions

Anyone in my life knows how sick I've been over the years.  It's heartbreaking to know that there is someone who is far more ill than I.  She's literally hanging on by the scratchmarks of her nails.

In efforts to help Elizabeth get life-saving treatment, I decided to share her story here, as taken from her bookpage here. 

"Note  to Reader 
Foreword (from Elizabeth's book)

Dear Reader,
I don’t know if there is really a way for anyone to understand the depths of pain and suffering from which this work of Elizabeth’s springs. As one who has witnessed this firsthand, being physically with her in the day-to-day more than anyone else, it’s still unfathomable to me what she goes through. The reality of her minute-to-minute existence is far too unbelievable to wrap the mind around. Most of the writing was done in a very dark, cold room in complete silence. Much was done with the computer on Elizabeth’s lap, with her typing with her eyes closed, as the light even from the computer screen was too much, too painful. All of it was done with a continual headache/migraine, as those only change in level of severity. She worked in small increments in between excruciating, unbearable physical pain and exhaustion, and moments of reprieve where the physical pain/symptoms and migraines were “bearable enough.”

Most of us will never know the loneliness that she experiences or the fear as she watches uncontrollable things happen to her body each day. Even though I am with her as often as possible, and she is never out of my thoughts or my heart, most of this she suffers completely alone, except for her constant companion and angel of God, Symon.

Yet in this existence, that is impossible to call a life, she has never wavered in her faith. She has sought, screamed, challenged, asked tough questions, and been candid in her queries, and also candid in all of what she experiences. However, she has never abandoned her faith. Additionally, she has always been there to support those she loves in spite of the constant abandonment, with words of faith, encouragement, love, and wisdom, always giving beyond her strength and capabilities and often paying a huge price of increased physical pain and other symptoms for days or weeks, as her own health deteriorates.

To me, she is the epitome of what God wants for all of us. To love where there is no evidence, give when there’s nothing left and believe where there is nothing left to hold onto except “the scratch marks our nails left behind.”

Elizabeth, you are and will always be a daughter, very dear friend, and mentor to me. I congratulate you on completing this amazing project, this work of raw faith. Your perseverance is astounding and awe- inspiring. To witness the tortures you live every second of every day, the loneliness, the travesty, and injustices, and then to see the incredible genuine love you are, is truly phenomenal. God shines through you so brilliantly, such is evident to all who know you and know of you—and is equally evident through the God-inspired writing you have completed and now share with the world. I love you forever.
                                     Dr. Corey Cameron
__________________________________________________________________________

Sudden loss and great destruction shattered the everyday world of Elizabeth Chalker. Facing difficulties from the beginning of life, her spirit had persevered. But when a serious, long-term, physical illness that went unnamed for most of her life devastated her body, her hope for a future and her very life were threatened and continue to be even today.

In a short time, this beautiful, educated young woman—already established in her career in forensics and
neuropsychology and engaged to be married— experienced the unthinkable. Her engagement was abruptly broken, her career was lost, and most family and friends disappeared from her life. Nevertheless, as Elizabeth’s health has declined and she has endured other life calamities that sent her into intense suffering, remarkably her faith in God has matured and proven to be steadfast. At times she has had nothing left in her dark apartment but Symon, her loving dog, and the “Presence” of her heavenly Friend. He never left. Elizabeth might have argued that point for there were times when even He became silent. During those long periods she could have said with Job:

“Oh, that I knew where I might find God, That I might come to His seat! I would present my case before Him, and fill my mouth with arguments. . . . Would He con- tend with me in His great power? No! But He would take note of me. There the upright could reason with Him, and I would be delivered forever from my Judge. . . . But He knows the way that I take; When He has tested me, I shall come forth as gold” (taken from Job 23:3–10).

In the years I have known Elizabeth and witnessed the merciless testing of her faith, I have watched this spiritual realization rise to the surface. Like Job, she has been abandoned by the majority who were closest to her. However, like Job, she has come forth as gold. Elizabeth has not allowed her mind to stagnate. Instead, she began to write. The ripe fruit of that writing is in your hands.

This is no ordinary book about personal loss, crisis, physical illness, and shattered ambitions. The message here runs much deeper. What I discovered— being mirrored back to me—were my own responses to life’s disappointments. Somewhere, Elizabeth disappeared and I saw myself struggling with personal issues that needed fixing. Many were issues I did not know were there. At that point, I realized the book had a “surface” message and a deeper, heart message. As you read, allow the book to read you. Let Elizabeth’s cries of the heart and spirit uncover what is sequestered in your own heart. Let Elizabeth’s words lead you on a journey beyond her illness and life tragedies to its conclusion— where you will emerge challenged and even strangely comforted by your own life struggles, knowing that you too can have access to this pure faith, realize the bigger purpose for your life, and “come forth as gold!”

Pastor Charles Carrin Retired from serving an individual church; now pastoring pastors."

 

I've yet to read this book myself but have heard nothing but great things about it.

They have finally found a LLMD who is willing to see Elizabeth despite how sick she is.  There's a fundraiser frantically taking place to help get Elizabeth from her home in Florida to the doctor in Maryland.  Given the severity of her illness, she is unable to ride in a car/van/bus etc. on the road and is unable to fly commercially.  Her only hope is a chartered flight.  Donations of and assistance for such extreme measures have been exhausted hence the reason for the fundraiser.  If you can contribute at all to the $23,000 needed, please do so using the contact information on her website.  There are folks who've been donating as little as $5.

Still Hanging On

It appears my monthly updates are more like once every two months.  I appreciate the 'check-ins' from those of you in the meantime.  :)

To start, I still do not care for (in the words of my Gram who didn't allow us to use the term 'hate') the term 'better'.  I know it's easy to ask if someone is feeling better or to tell them they look better or to even tell them you're glad they're feeling better.  However, that's not a term to use with a Lyme patient.  We fight so long for a diagnosis that we often end up so incredibly ill that we'll literally be fighting the rest of our lives.  

In late-April I began a treatment targeting Bartonella.  This is an herbal remedy that comes in a liquid form.  I started with a single drop in about 1/2 ounce of water twice a day and slowly built up every 5 days.  Once I reached 6 drops some pretty intense herxing started and my doctor had me drop back down to 4 drops.  Through various fluctuations in drops vs herxes, I'm down to 3 drops for now.  Amazing how just drops of a remedy can have that much effect, huh?!

At my monthly follow-up with my doctor in May she pointed out that by herxing it shows that a) I do have a Bartonella infection and b) we're on the right track for treating it.  She was please to see how well I'd been doing and we were both anxious to see how I do when I returned home.  

I've described what a herx is in previous posts but for those who are wondering what the experiences were like this time around it was a lot of neuro stuff.  Lots of sporadic spinal and hip pain.  Not necessarily sporadic in the frequency but the places.  There are various spots along my spine where I get an acute stabbing pain.  More seizure-like episodes and tremors, especially at night or after I've done anything that's stimulating during the day.  Some disorientation.  One evening as my friend & I were driving home we were coming upon the exit to my grandmother's house I nearly asked her if we could swing by but then I realized that it wouldn't exactly work since Gram's been gone since 2007.

I should probably clarify that nobody chooses to feel this way.  I don't know of anyone who can have a seizure on demand.  In the words of one neurologist I saw, "a seizure is nothing more than the central nervous system being overly-stimulated."  For the first time in ages, I reached out to a friend, a non-Lyme friend who had seen Under Our Skin and who I felt was compassionate enough to understand.  I shared with this friend that I was feeling more & more like Mandy and less & less like me.  The response was shocking - "What can you do to change that?"  And later "You're letting it win." I suppose this person was trying to be supportive but instead it was incredibly hurtful.   

Despite the more severe herxes (I'd rarely herxed with treatment until then) I thrived while in San Diego.  The warmer & drier climate made a HUGE impact on the way I felt.  Pain was lower and other symptoms were milder.  I still struggled but I wasn't 90% bed-bound like I am here in the PNW.  My anxiety was even lower - allowing me to do things and go places that months or even years ago would send me into full-blown panic attacks.  Which is quite odd when you think about where I was in relation to where I am - large city vs small town.

I was able to spend some precious time with family and friends and even made a few new friends.  And yes, I was able to meet all three new babies and attend a soccer match. :)

As soon as I stepped off the plane my body began to crash.  It has continued to crash to the point where I'm fearful of the long-term ramifications.  I feel like I took several steps forward in my personal War on Lyme while there and have been pushed all the way back to where I was prior to starting treatment last September.

Given the difference, I've made the decision to move back to San Diego.  Something I never thought I'd hear myself say, something many thought they'd never hear me say.  I can't ignore the simple facts though.  I'll load up as soon as God provides a way.  

Lyme, Babesia and the rest have been laying pretty dormant the last couple of months so we haven't been treating for them but I think good ole Babs is sick of being ignored and is beginning to have little fits.

For those of you who wonder about Lyme and would like to know more, Under Our Skin is now streaming on Netflix.  If you don't have an account there you can 'rent it' through YouTube, Amazon, iTunes and other on demand sites.















For those of you living with a chronic illness or wonder what it's like to live with a chronic illness, pick up Laurie Edwards's book Life Disrupted from either your library or favorite book seller.  She's written in mostly-easy-to-understand language and in fairly brief chapters, both of which make this an easy read. I'm about half-way through it.

 

That's about all for the updates.  Not a whole lot of excitement.  I hope to get to the point where I can educate small groups about Lyme and its associated diseases.  Those of you on my facebook know I post quite a bit there in hopes of educating. I apologize for the rather negative update - it's just where I'm at right now.