My doctor wanted to know what I was doing

Things began to change and my rheumatologist noticed.  He told me, “Sheryl, I never see my patients getting better.  But you are.  Can you tell me what you are doing to get well?”  It was a tough question to answer in a short visit to the doctor’s office.  I remember shrugging and saying, “It’s hard to describe.  I am on a deeply personal and spiritual journey.”   I could see his genuine curiosity.  But that’s about all I was prepared to say.  After all, how could I begin to explain this journey I was on?

In less than a year after I began meditating I was healed.  I don’t know exactly how long it took because after I got into my healing routine I had, my focus slowly switched over to one of following joy rather than searching for a healing.  I lost focus of “trying” to heal myself and instead became focused on loving my family and finding more joy in my life.  I paid less and less attention to my symptoms.  Then one day I checked in on my health and realized that I couldn’t recall the last time that I had experienced pain or fatigue!  I remember being actually startled by that revelation.

I realized I was symptom-free

When I realized I had been symptom free for a while, dozens of questions came to mind.  What could this mean?  Am I getting better?  What’s happening?  But I didn’t have answers at that point; just a new awareness that things had changed.

So this kept occurring – this pattern of becoming aware of not experiencing symptoms, taking stock and then moving on.  Until one day I realized that many months had passed and I was still feeling well.  Months turned into years, years turned into decades, and somewhere around 5-10 years later I felt I could safely say that I was healed from lupus and rheumatoid arthritis.  Since I never went back to have my rheumatologist run another ANA blood panel, I guess I can’t technically say that I cured myself from lupus and RA, but I can certainly say that I have been in remission for 20+ years since I haven’t had any symptoms. 

At one point I did try to write a book about my healing.  There was a lot more to it than just meditating and I wanted to share what I had learned.  There were some very specific things I did in my meditation and my healing process included deep self-examination.   I don’t feel I came out the same person.  I felt better than before I had been diagnosed with lupus. 

I believe healing does that.  I don’t know that you can cure yourself from some serious disease without self-examination and change.  I believe the reason we get sick in the first place is often due to how we are living our lives.  Disease is just the messenger that change is necessary.

But that book didn’t want to be written.  I kept trying.  But it’s like the story wasn’t finished and it refused to be told.

Then my life changed again

Then in January of 2021 my life changed again.  I had pulled my rotator cuff muscle in my right shoulder.  It wasn’t that bad, but I could definitely feel it.  I knew I had to take care of it.  But I had an appointment to get my horse’s feet trimmed and I needed to go out to our ranch and hold him while the trimmer did his work.  Unfortunately that day my horse spooked and nearly ran me over.  I put my right arm up to block the horse, but my arm wasn’t a match for a 1,000 pound animal running at me.  I screamed out in pain and knew immediately that I had done some major damage to my shoulder.

I wasn’t too surprised I had muscle tremors/twitches

The arm got worse in the days that followed.  I lost almost all my range of motion in my shoulder.  AND it was painful as hell!  So I wasn’t too surprised when I noticed some muscle twitching in my arm and hand.  An MRI showed a high grade tear along with a painful condition called a frozen shoulder.  My shoulder was a mess and it made sense to me that I had damaged some nerve tissue in the process. 

It wasn’t until sometime in April when I talked to my orthopedic surgeon about surgery on my shoulder that I began to think differently.  I asked my surgeon if I could expect the surgery to fix the nerve damage I imagined had happened to cause the tremors.  I was rather shocked when he told me that the damage to my shoulder and rotator cuff couldn’t be the cause of my problem!   

I actually just didn’t believe him right away.  It wasn’t until later that month when I started getting tremors in my left arm that I began to think differently.  I began to suspect that when the horse plowed into me, the impact affected my neck.  So I trudged off to my chiropractor to have him take a look and he immediately recommended we run some x-rays, which we did.   The x-rays suggested there could be a pinched nerve so he advised I take the x-rays to my doctor and request an MRI. 

My doctor diagnosed me with Essential Tremor

So I did.  My doctor didn’t seem to be interested in the x-rays.  She had me do some tests and decided that I had Essential Tremor.  I did have family history of it and so that was that!  End of discussion.  I left the office feeling strangely unconvinced.  Something just didn’t resonate about the diagnosis.  I felt there was more going on.

And the diagnosis wasn’t right.  A little over a week later my right leg started to tremor!  Not good.  I called the doctor and requested I get back in for more tests.  I was referred to a neurologist.

Two brain MRI’s, a neck MRI, and a DaTscan later I was diagnosed with Parkinson’s

Within a couple weeks after my Essential Tremor diagnosis, the tremors entered my left leg, the last remaining part of my body that was not affected by tremors.  In a short span of 6 months my body was consumed by internal and external tremors.  A barrage of tests revealed that I had a fast-progressing case of Parkinson’s – and the doctor couldn’t tell me why it was progressing so quickly.  It’s not supposed to progress quickly.  Normally it should take years, to move through your body completely. 

My symptoms were more than invisible and visible tremors

 Although my entire body is now affected, the right side is definitely the most affected.  (The DaTscan report said that I had evidence of early Parkinson’s in the left side of my brain.  It didn’t mention the right side and I assume that they were observing a relative difference between the two sides of my brain; the dopamine levels being lower on the left side/right side of my body.)  My symptoms included:

1. My head: 
   • On the right, I can feel freaky activity in my cranium.  It literally feels like someone is scrambling my brains.  The right side of my face feels stretched tight.  My right eye twitches a lot, especially if I rub or touch my eye for any reason.
   • I have the twitching in the left eye, but not as frequent. 
   • The right side of my lip droops.
   • I have had some problems swallowing pills and I’ve experienced some strange swallowing reflex that’s not voluntary.
   • My voice cracks in the middle of speaking and I can’t recover my voice by drinking water or coughing.
2. Arms: 
   • Sometimes I have trouble moving fingers on my right hand, like when I use my right hand to control the computer mouse.  Sometimes my fingers don’t want to curl.  It’s an awful feeling.
   • I find my right hand/right arm is stiff and tends not to swing when I walk. Instead I find my hand doing “the pill rolling” action I’ve heard of.  What’s strange is that at this point I have control. I can consciously stop the “pin rolling” and I can focus and make my arm swing normally. 
   • I have tremors in my right arm/hand.  On the left, they aren’t as frequent.  I only seem to have trouble with the left side when driving (holding the steering wheel) or holding something in my hand (like gripping something).
3. Torso:
   • I am stiff in my right side of my torso.  My right hip is probably the tightest part of my body. 
   • There is strange movement, substantially more than normal, in my whole abdominal cavity (left and right).  It’s the same sensation I had when I was pregnant and the baby was moving around.   It makes me aware how/why this disease affects my organs and bowels.
4. Legs/feet:
   • My calves/legs/body is tight every morning I wake up and get out of bed. 
   • My right foot feels like it’s asleep.  All of the time.  I can tell that my balance is off a little because of it.  I can tell especially when I am on the treadmill trying to walk in a straight line.  It’s hard to keep that foot going straight due to balance.  My proprioceptors aren’t working very well.
   • I have tremors in my right foot; sometimes it can affect my leg, but rarely.  I have tremors in my left leg, but they are rare.
5. Back:
   • I’ve had muscle tremors in my upper back – on both the right and left side.

Early signs I had of Parkinson’s

In addition to these new signs of Parkinson’s, I’ve learned in retrospect that Parkinson’s had been at work on my body for years.  Symptoms which are considered early signs of Parkinson’s that I have included:

• REM sleep disorder
• Constipation
• Incontinence
• Really low blood pressure
• Voice changes
• Handwriting changes
• Melanoma
• Depression and anxiety

That’s my story

I beat two incurable diseases twenty years ago.  And now I find myself diagnosed with another incurable disease. 

After getting over the shock of the diagnosis I had to decide what I was going to do.  My doctor prescribed Levodopa.  But given what I’ve read about what happens to you after you’ve been on that for a while, and after having been put on Primidone when they thought I had Essential Tremors, I decided early that medication wasn’t what I wanted.  Given my past, there is just no way in hell that I am going to surrender to being a victim of Parkinson’s!  I have to try to heal this.  And it’s hard to know if you are healing if you are on tons of medication.

Things have changed

But it’s been 20 years!   Things have changed.  I’ve changed!  I did it before but I don’t know if this will be a similar journey.  Can I replicate what I did last time?  Do I want to replicate what I did last time?  And, what if anything should I do differently? 

Other things have changed.  The internet and information just wasn’t available to me like it is this time.  There’s new information out and available on self-healing.  Maybe I want to modify what I did last time to heal?  Maybe I don’t! 

The fact is that I don’t know that I’ve ever read about anyone going through something like this and I thought it would be valuable to share what I am going through.  I believe I can heal, but will I be able to do it again?  I don’t know what I will learn this time around that I didn’t learn last time.  I don’t know how similar will this journey be – or if it will be drastically different.  And I don’t know how long it will take.  For someone who has healed myself before I feel like there are lots of unknowns.

So . . . what will I choose to do this time?  I invite you to come join me on the journey and find out.