Trying to Focus on Facts

 Feeling fairly foolish recently as I thought I understood why I had this resurgence of symptoms and that I could predict with some certainty that it was finite based on weather events.  Well, the weather did change and for the 2 sunny days we had, I got much worse.  So, I'm back to figuring out how not to be angry at the loss.  Coping with symptoms as I try to maintain adequate of care for self, home, little family.   I need to be and feel responsible for some tasks.  That responsiblity is often denied to those who are chronically ill, and it is a huge element in heading towards depression.  "If nobody counts on me for anything, then I guess I'm not able to be accountable."  So, as I fight off negative thoughts today, grateful that I am maintaining a teeeny- tiny role in volunteering.  Grateful that I had a part in rescuing 4 cats from a shelter.  Grateful to know that as those 4 lives go on to influence other lives, I had a bit part in the play.  Its the gratitude I've got to continue to wear.  (Wish I could still crochet, I would make myself a lei to wear representing things I'm grateful for.)  I know from experience that's the only way to really stay above the negative self-talk.  

The truth is that my symptoms have not been so severe since 2017.  Fact.  Also, true is the fact that humans are biologically designed to forget what pain feels like, or women would never have more than 1 baby.  So, pain is always disturbingly new.  Fact.  I do not have any way to know how long this period will last.  Fact.  It is not safe for me to drive or make decisions.  Fact.  I have built a network of supportive friends around myself.  Fact.  I am still seeing the most important specialist, my psychiatrist, and in fact see him this week.  Fact.  The suffering is minimal.  Fact.  The discomfort, pain and confusion are always present when I'm awake.  Fact.  I can pick up my phone and reach out for support at any time.  Fact.  

So, there's some of the facts laid out.  I must get comfortable again with a lot of uncertainty.  My Savior will assist me in that as always.  He will carry what I cannot.  He will assure those I love that my heart is still true, though my ability to communicate it is lacking.  It is not for me to hold guilt.  That is not part of my journey.  My journey with this illness might be for me to finally understand that I do not understand it.  That it's not for me to know, just to live with.  

At this point, I'm not even sure if I make sense.  Need some rest.  

My blessings surround me and I'm still very able to identify them.  Gotta keep that up.  

May you identify yours too. 

Marie

What Is vs What Was

I haven't updated this blog in over a year.  Because I have been living.  Enjoying.  Serving others.  I realize again, that I turn to writing this when I need to share because the pain is too great to bear alone and also when I've discovered how to handle something and I think someone else may benefit.  

I've had a bit over a year again with almost no health difficulites.  It was the pandemic year, ironically.  I still fought migraines, but only 4 or 5 throughout the year were severe.  All the others responded to my therapies. I didn't live in any physical pain.  I grew socially so much because of zoom.  I have a support system now and friends I didn't have a year ago.  

I haven't had any epiphanies to share until now.  

I had a "relapse" on May 2.  It was triggered by springtime weather systems. It is still with me, limiting me and reminding me to be gentle with my sweet body.  I'm ambulatory during the day, with enough strength and energy to do most of what I want.  I walk my dogs, I clean my home, I do all my self-care.  I cook.  But, not driving.  There's a very constant undercurrent of "at any moment you may have to just sit on the floor/ground".  By the time I stop moving around and about 4 pm arrives, I'm making dinner from my wheelchair and I watch evening TV in a LOT of pain.  This has been the daily thing for 11 days now.  With just sublte variations.  

But, as I was chatting in prayer group yesterday I realized that this time, I can say with confidence, that I think it might be finite.  I think it's related directly to atmospheric pressure and nothing else.  I have solid hope that when we are solidly into summer, I will be "back".  

So, here's what that means:  Now, I only have Ehlers-Danlos Syndrome.  I shed almost all of the comorbidities that were with it.  I healed and continue to constantly do so, daily.  

A short list of diagnoses that I no longer suffer:

Gastropariesis (def:  partial paralysis of the stomach):  Healed by radical nutrition overhaul.  

POTS (Postural Orthostatic Tachycardia Syndrome):  Low blood pressure, which often kept me in a wheelchair, is healed.  A period of high salt therapy and a reconditioning of my muscles solved it.  I never get orthostatically dizzy anymore.  I used mineral supplements for some time, which I am successfully weaning off of.  THIS IS HUGE. 

Raynaud's Syndrome (a condition in which some areas of the body feel cool or cold): Healed.  I have healed my circulation in many ways.  I no longer need to wear mittens in May.   I do still like to fall asleep with a heating pad on my feet, but I can sleep without it.  I'm not limited by this anymore.  Its gone. 

Hypothyroidism (low thyroid production)  In therapy.  Under current care of an integrative physician.  Fixed.  

Fibromyalgia (a disorder characterized by widespread musculoskeletal pain and accompanied by fatigue, sleep , memory and mood issues) : Gone.  Entirely.  The pain of fibro, in my humble opinion, which is as good as any doctor, is related to inflammation.  I undergo constant detoxing of my body.  I no longer have any inflammation, no matter how small.    

Migraines (recurring debilitating headaches/head pain often causing nausea)  Almost gone, in comparison to how prevalent they were.  This is possibly my biggest success.  It is due to 3 things.  First, a correct diagnosis of my wrongly curved cervical spine and intense chiropractic work to alleviate that curve and encourage the appropriate one (by using a double neck pump daily).  Second, radical nutrition change, eating nothing that the Earth doesn't grow.  No animals, no dairy, no oil, no wheat.  And third, therapeutic coffee enemas.  Twice daily, I remove any toxins in my liver by force, if you will.   The purpose of the coffee enema is not to clear out the intestines, but the quart of water in the enema stimulates peristalsis (helping further heal the previously mentioned Gastropariesis) in the gut. A portion of the water also dilutes the bile and increases the bile flow, thereby flushing toxic bile (loaded with toxins by the glutathione S-transferase enzyme system) out of the intestines. Coffee enemas are held in the colon for 12-15 minutes. During this time, the body’s entire blood supply passes through the liver 4-5 times, carrying poisons picked up from the tissues. So the enema acts as a form of dialysis of the blood across the gut wall. That all being said, I no longer live at risk of having one debilitate me. I stay cleaned out. When something triggers one, I have a reliable solution.

I have dozens of joint braces that I don't need anymore because I've finally built enough muscle to support my loosely constructed skeleton.

I have innumerable gadgets for therapy just collecting dust. All along the back wall of my closet. Dozens of them.

I have minimized my prescription meds to antidepressant, antianxiety, thyroid, female hormones, and migraine abortive. That is unbelievable considering the length of my previous diagnosis list and the many, many unnecessary, and occasionally harmful prescriptions I'd still be on if I hadn't wanted to be clear of them.

So, even though I might be using my wheelchair later today, I have healed myself!! I've done it! I won't ever go back to the suffering I used to endure because I've done the work. Now, I can live without any fear of this relapse taking my life over again. I can understand, with empirical evidence, that I no longer suffer those other things and they won't return unless I stop my healthful therapies. Yes, this current time is frustrating, but it is what it is. I don't have any sway over atmospheric pressure. I have taken the reigns and controlled what I can control. I keep doing my self-care and cooking my food that I need. Yes, it takes hours per day. And, yes, it has given me my life back.

Here is my thought for you: Take your own reigns. Control what you can. Much common disease nowdays can be solved by appropriate nutrition. But I'm PROOF that even rare disease that medical science wants to medicate or operate on, can be healed in other ways. PROOF. Here I am. Walk, even if you don't feel like it and even if it hurts. Educate yourself, and keep your mind open. And eat your veggies.   Believe in your story, your journey, having value. This is our one time on this marble. Let's make the most of it.

Hoping to spread my Blessings which are too numerous to count.  

May yours grow

Marie