My current re-quest....

I posted this blog entry on May 12th. On May 13th, I put it back in draft. I felt too vulnerable, or maybe like I was trying to prove something.

I've edited and re-edited this blog entry and My Story below. 

My mental chatters have been (among others): Do I repost it? Do I leave it in draft? I don't know. My blog's not on search engines, so it's not like it'll be picked up. I don't get many hits, even if search was enabled. But it is still public. 

Anyway, I'm gonna post it again, in it's edited form.  I feel better about it, more genuine I think. Maybe I'll keep it on my blog this time. Ha.

I am on a "re-quest" ...a quest again. I say that in reference back to my healing days in my previous chronic illness life. It's pretty incredible that I got well then. Can it happen again, even at my age? 

April, 2021, was my 10-year anniversary of the onset of polyradiculitis. That reality hit me hard in March and April. The past ten years have been a tough trek, and I think I've learned a lot but don't know yet how to share it. And I may never know how, or if I do I may decide not to share, at least publicly. Time will tell. 

I have had significant improvement in the past three years for which I'm grateful ...and humbled by.

I posted the following on a forum for Mind Body Syndrome (MBS), aka Tension Myositis [or Myoneural] Syndrome (TMS), under My Story in the member's profile section; I didn't post it as a public thread.

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My Story

In 2000, Dr. Sarno's book Healing Back Pain, along with Dr. Schechter's TMS home education and journaling program, (supported by my then-doctor) guided me so that my body was able to completely eliminate pain & spasms from a herniated disc which had not responded to physical therapy, muscle relaxers, or steroid injections, and that had been confirmed w/an MRI.

I'm currently navigating new issues & am again doing Dr. Schechter's home program.

I think I am a combo TMSer. But even if I can eliminate at least some of the symptoms via a mind-body program, then my heart-mind-brain-body will have more energy to address a neurological issue that began in 2011...and maybe, just maybe, heal that too. I want to believe that is so.

I was gonna stop my story here, but more decided to come off my fingertips. So a cursory overview is below. It's a much longer story, of course.

I may add to my story below as I continue on my self-healing journey.

Thanks to anyone who reads this,

~Carol

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The neurological issue is a rare type of peripheral neuropathy, polyradiculitis, which means multiple nerve roots are swollen at the spinal cord. For me, my lumbar and cervical roots are inflamed. So all my limbs, extremities, back, neck, and jaws are/have been affected. Polyradiculitis is typically associated with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) and Guillain-Barré syndrome. I have neither of those, but have/have had the same symptoms.

Onset was in spring 2011 after I'd been on oral terbinafine (Lamisil) for 5/6 weeks (which I promptly stopped). First diagnosis was idiopathic edema. Second diagnosis was a serum-sickness-like response to oral terbinafine. I was put on up-and-down titrating, low-dose daily prednisone which helped control symptoms. Prognosis was that I should be better within 18 months. Eighteen months came and went, but I was only worse.

Also, a series of emotionally traumatic events occurred beginning August, 2010, culminating in January, 2014. I had filed a formal complaint on my then-licensed, (now ex-) mental health therapist of two years for boundary violations (none were sexual).  In 2012, I was a witness for the state at his licensing board hearing. In January, 2014, the board made its ruling; the therapist's license was revoked. (Link: Therapist Abuse) Through that time I hired a cognitive psychologist who had previously helped me. And I again did Dr. Schechter's home program in 2011/2012/2013 but without success.

Finally in 2013, after two years and eight doctors, I received a proper diagnosis of polyradiculitis. Treatment was and is corticosteroids: lumbar epidurals, cervical trigger point injections, and daily low-dose prednisone which I titrate up and down between my every six-week injections. Without the injections I probably would have ended up bedridden.

(I had taken a lot of prednisone decades previously due to allergies and asthma which I overcame via integrative and mind-body approaches. That story is here: Healing the Soul, Healing the Body.)

In June, 2016, we discovered that a hip implant I'd received in 2008 (due to bone deterioration from steroids for asthma) had been leaching cobalt and chromium into my body; this is known as metallosis. Heavy metals can cause or worsen nerve damage. (Mercury toxicity was a factor in my allergies and asthma in previous decades. So this isn't my first heavy-metal rodeo.)

After discovering the leaching metals, I thought (regarding the onset of polyradiculitis), It was the perfect storm. The leaching metals, the therapist abuse, and my body's reaction to the terbinafine. Without the terbinafine or the therapist abuse, would the metals have wreaked as much havoc?

The defective implant was removed and replaced in August, 2016.

My heavy metal ion levels in my blood were down within a couple years of the explant-and-implant-replacement surgery, but there may still be some heavy metals stored in my tissues. Since getting the levels down, though I still need a daily low dose of prednisone and steroid injections every six weeks (alternating cervical trigger points and lumbar epidurals), we've been able to reduce the amount of steroids in my injections and reduce the number of cervical injections. Plus...I have improved, incrementally but significantly. One example: For years, I couldn't lift a soda can to my mouth; the can was too heavy. Symptoms of weakness and fatigue have been worse than pain symptoms. I'm beyond grateful I can use my arms again.

My whole life changed due to the nerve damage. Many losses: social life; my pet-sitting business; being able to do things like cook, clean, and shop. Dressing and bathing were exhausting tasks; sometimes my husband had to help me. I had to give up backpacking and, for the most part, hiking. I had a goal to thru-hike the Appalachian Trail before all this happened. But I discovered I could ride a bike, which became my salvation, so to speak.

In latter 2019, I began having shortness of breath after an emotionally traumatic series of events. My doctor ruled out heart and lung issues. So we approached it from an anxiety standpoint, and I thought I was handling it okay. But in May, 2020, I began having thoracic pain and have had 3 spasms (the last one in March, 2021), and the shortness of breath worsened. We ruled out Covid and organ and structural issues. And my bloodwork is good. I had my yearly EMG and NCS in April, 2021, and I'm holding steady, not getting any worse which has been the case for a few years. The neurologist emphasizes how good and important that is.

So....

The thoracic pain and breathing issues prompted me to again do Dr. Schechter's home program which I began in April, 2021. The thoracic pain and breathing have improved, along with some hip-area pain and weakness where I've had the two implant surgeries.

The hip-area improvement has surprised me, and I am thrilled.

My surgeon had said I may always have trouble with that hip area due to all the trauma it's endured. I recently realized that I think I've believed that...but there is an opposite of that: I may also NOT have trouble with it. So, I've been working on changing my possible belief, and that hip area seems to be faring better....which I really wasn't expecting.

I'm on a continued radical self-healing journey, or something like that. I'm working to not be overconcerned about my symptoms, about the  outcome, or about the "work."

My plan (as of May 10, 2021):

~I have finished reading Dr. Schechter's book, Think Away Your Pain, and will finish his Mindbody Workbook journaling program by May 15, 2021.

~On May 9th, I began reading Dr. Schubiner's book, Unlearn Your Pain, and will apply his approach and workbook after I finish Dr. Schechter's.

~ I will continue with Dr. Lissa Rankin's two-to-three times a month Zoom course (which I started in early March), Healing with the Muse, and am attending her 6-week Zoom course, Rebirth, 2021.

~My chiropractor/homeopath/nutritionist/functional medical doctor is all in with me and has agreed to be my face-to-face Mind Body Syndrome coach. (I've been his patient since 2002.)

~My other docs and wellness practitioners are supportive of my approach.

~I am not giving up medicines or other aids until it is safe to do so. What if that actually happens? Well, if/when it does... Wow, just wow. It's happened before...

Thanks again...

Love, light, peace, and wholeness to all...

~Carol

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