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

I Know How To Do This So Far

My mostly stay-at-or close-to-home lifestyle, avoiding crowded places, my self-protection of wearing a surgical mask on public transit, all these things serve me well in adjusting to the pandemic.  I know how to do this, for now.  I know how to entertain myself.  I know how to be alone, even though I'm not all alone, Tim is here.  I know how to go forward without interaction from others.  I've successfully done it already.  I can do it.  That is the upside.  The icing on that upside cake is that I'm provided for by way of shelter and food more securely than many, many folks.  I'm able to keep my spirit feeling peaceful, yet at least marginally informed by only reading updated news once daily.  Ironically, I pulled myself off FaceBook almost entirely for Lent, and the timing was indeed the Lord's.  If I were at it's mercy, the constant fear and panic, I might not be handling this week so well.  Who knows?  I might choose to stay off it when Easter arrives. 

For now, I'm blessed.  That's the continuous thread in my life.  Blessed.  We have food.  Tim has a job he can do in our home.  I'm not in a high-risk category, nor is he.   But mostly, the blessing is my lack of fear or worry.  What will be will be.  It is only in my hands to a minuscule degree.  I'll protect myself and others how I can, and leave the rest to the Lord.

Have happy days.
Marie

The Irony of My Life

Pain level decreased and function increased since last writing.  Quite a bit on both fronts.  I'm back to driving, have taken on the role of Volunteer Coordinator of my local animal rescue, and back at church.  Walking freely and easily.  Will return to the hospital next week.  Have gone to some yoga classes this week with a new friend in my neighborhood.  So here is the dramatic irony. 

In yoga class, we are asked to keep cell phones silent, which I easily remember to do.  But my phone rang anyway at 9:45, with only 15 min left of class.  I quickly scooted to silence it.  It wasn't a call, it was my alarm.  I have that alarm set for twice weekly on Tuesdays and Fridays to remind me to do something otherwise I'd forget.  That task is to plug in my power wheelchair to keep the battery charged.  Because I want to be ready, and I need it to be ready if I need it.   If I need it and don't have it, well, been there, done that.  Not good.  Because each day when I wake up, I have no expectation as to how I'm gonna get through it, on legs or on wheels.  In pain or not.  I forget this.  I go through days and days at a time, not remembering that it could all change in a blink.  This alarm reminds me.  This alarm not only has a functional and logistical place in the upkeep of my equipment, it serves to ground me, absolutely.  No one can anticipate a dramatic personal change of health and function and be prepared for how that changes you emotionally and mentally.  Physically, you survive it.  That's the goal.  That's all you're doing.  The mental and emotional are the side-jobs.  I do take antidepressants to keep me as evenly balanced mentally as is possible in the face of changes and disappointments.  But emotionally, I would not survive this drama without my FAITH.  That fact, I know to be true.  It's too heartbreaking, again and again, to suffer the loss.  So, I began to picture myself like a very small girl who used to stand on my Dad's or Mom's feet facing the world, letting them walk me around.  That's how I picture myself with My God.  He has me.  He will carry me through what I must face, completely supporting me, however difficult it feels.  He will not let go my hands and will be under my feet at ever step.  His guidance will keep me facing what I need.

Irony.  In a yoga class being reminded that it could be impossible to walk this afternoon. 
Have happy days and see your blessings.  Stop and see them. 

Anger With a Side of Gratitude

I want to thrash out at someone or something.  I'm so hurt that this has happened again.  I'm wanting to turn to someone or something else and reign down destruction on them so they hurt too.  I'm truly desiring to destroy.  To hurt as much as I hurt.  So far, I'm successful at not taking this change out on anyone or anything.  But, that's a job in itself.  The utter devastation that I feel seems to have some drive of its own, wanting to multiply. 

So, again, as always, I turn to gratitude to bridge me to grace.

There was a period of 10 long years or so in between the last "remission" in 2008-09, which was 14 months, and the more recent one of 18 months or so.  Only God knows how long it will be until I have another.

Here's everything beautiful I was part of in my latest 18-month remission:
I was a positive wife.
I was an eager homemaker.
I joined a church, became involved in my church, actively serving the Lord by lectoring.
I made friends.
I nurtured friendships.
I pruned relationships that served me badly.
I hold the faces of hundreds of kids and babies in my heart who I spent time with at Children's Health hospital.
I hold the images of dozens of animals I encountered while volunteering at my local shelter and rescue organization.
I was generous.
I helped to hold/host/organize/whatever our city's first awareness race for my particular disease.
I became Nutritarian.
I walked a half-marathon.
I saw the Grand Canyon and hiked in it.
I went to Las Vegas and hiked all around it.
I danced at my brother's wedding.
I fed the homeless, learning names, and praying with them.
I went to Universal Studios, and rode the roller-coasters.
I drove myself around my town and further.
I tried to spread kindness, and did.
I kept a grateful heart.
I engaged in wellness therapies.
I helped re-shape my neck.
I showered every day. 
I walked my dogs easily and eagerly.
I prayed.
I became a Daughter of the King.
I let myself live without my disease at the forefront, where it had been for so long.  I didn't wait for the other shoe to drop.

So now that I've listed some stuff, I feel far less destruction-y.  lol  The awful truth is that the little mini-Marie is so devastated inside me, deep in my psyche, that simple grieving isn't gonna do it.   I haven't cried yet, over the loss.  No telling when that will come pouring out. 

I know I am loved. 
May you not forget your Blessings.  I haven't.
Marie

Independence and Connotation

So, since I am unable to do much of what has lately filled my time, I find myself thinking, and consequently, I guess I will put my thoughts down here.  For better or worse. 

In the bathtub just now, I was reflecting on independence.  A word that is commonly used with it is fierce.  But after having it and losing it repeatedly, I see that the word fierce is just place-holding for the word pride.  People! are proud of themselves when they accomplish stuff.  "Look Mom, see how high I can swing!"  Its ingrained in us from super young that its a good, advantageous, and desirable to be able to do things ourselves, and to need help is a weakness.  And to ask for help, that's more than just a little lame.  No one wants to ask for help.  Not at any age.  Kids fail in school because they didn't ask for help and no one noticed that help was needed.  Folks fail at jobs because help was needed but fear of weakness was greater.  Marriages fail because therapy is seen to be asking for help.  Elderly folks fall because they won't use a cane when they get unstable.  That's what we've gotta get around.  I need a lot of help again in life.  For a long time, I didn't, but now I do again.  I can't drive myself anywhere.  I can't take a load of laundry out of the wash.   I can't pick up a full gallon of milk.  I mean, I could do all those things, if I didn't care about myself or my safety, or the safety of others.  Physically, its possible for me to drive.  I can sit there and turn the car on, and get going down the street.  But, I am physically unable to grip the steering wheel properly, which, I think we can all agree is a ginormous problem in itself.  And I'm unable to move my foot rapidly enough, or have strength enough in my leg to use the brake at the necessary time.   Also, I can take a load of laundry out of the washer physically.  It might sublux my shoulder, elbow, or any part of my wrist  and hand to do it.  And even if I manage not to injure a joint, it is incredibly painful to go through those motions.  I physically require rest after doing the task.  The same with milk.  I can lift it, but the agony I force myself to endure in doing so, instead of asking for help, feels like disrespect to myself and my situation and my needs.  So, I'm not defiant in the face of my dependence.  It is what is, right now.  And I have HUGE respect for myself and all I have survived and endured to live to see this very day.  So, I will ask for help whenever, wherever, and often.  Because the fierce was let go years ago.  Because the pride has forever fallen away.  And very importantly, because people in the world want to help.  By giving them the opportunity, I give them a chance to do a good thing.  And 2 other folks might see that good thing.  And those 2 folks might post on social media about the good thing.  And then, by asking for help, I have made a positive ripple.  Which empowers me.  Needing help doesn't equate weakness.  It is strength that asks for assistance.  It is wisdom which recognizes limits and seeks aide.  I'm empowered by my dependence.  It would be lovely to not have had to ask Tim to bring my wheelchair from my bedroom to the kitchen where I was on the floor, but I needed it.  And he did it.  And however he felt about doing it for me, I know he was glad to help me up off the floor.  And I hold no shame with it.  I think fierceness needs to apply to protection of our self-respect, rather than our independence. 

My .02 today.
May you all feel as blessed as you actually are. 
Marie

Dramatic Morning

And just like that, everything changes dramatically.  Again.  All it took was organ music.  Hours later, I still cannot walk.  Searing pain, all over.  Fuzzy thinking.  Freezing cold, everywhere.  It’s been so long, the best part of a year and a half, since pain like this has been with me.  I was trying to untangle it on the way home from church and explain the sensation to Tim.  I compared it to a bell being rung, and more importantly to the subsequent sensation of ringing that lingers.  That’s what I feel in my bones.  It feels like my skeleton, all of it, is ringing, or buzzing, or something like that.  He said the organ must have hit “Marie’s resonance frequency”. Lol.  

It makes some sense in my head because, my connective tissues are looser than they should be, therefore, my skeleton is not held together tightly.  But instead, I am loosely constructed.  So, I vibrate more.  And the more I vibrate, the more my nervous system is stimulated, and the more subsequent pain.  Which is why I have brought my cane out and why I will be using my wheelchair for the unforeseeable future.  My sweet T brought my laptop to my bedroom for me, so I could capture these thoughts.  I can’t even walk while holding it.  Which means no driving.  Which means no volunteering with babies.  Which means no handling unknown dogs at the shelter.  Which means setting no cat traps.  So, today, I’ve lost a lot. 

But, it’s all just a chapter.  I don’t know how long this one will be.  But, another change will come again.  So, all is not lost.  Just some.  And not forever.  Just for a while.  I might regain function tomorrow.  Or not until June.  Or not until 2022.  But it is possible.  Because with God, all things are possible.  And if I am anything in this life, I am with God. 

I have been, and continue to be, so very, very blessed.

Life Can Be More Than Descendants

I have had this on my mind for a little bit now.    It is because I am so well, physically, mentally, socially, etc that I want to address this now.  Mostly, I hope that by writing it, I can make more sense of it and get it off my chest, where it now lies.

My own life is not lessened by the fact that I never had children.  My funeral will be less crowded, surely, but that does not mean I am less loved or that the impact I had was less meaningful or important.  I don't get to have anybody I raised return to me during the year, at holidays, or call me on my birthday, celebrating me.  I don't have grand-mothering to look forward to.   And I am ok with it because I have to be.  It is what is.  So, I accept it. 

The only social media I'm on anymore is FaceBook, and I've left most of the support groups I used to spend time and energy within.  So, my information is coming from other healthy folks, folks who don't live with illness every day.  And, what I interpret is that being a parent generally validates a life, and without that experience, many have no idea how they would carry on.  This is so insulting to me.

It is lovely that any one of our lives reach so far and wide that churches fill for funerals, but, that doesn't mean her life is better in the eyes of Our Lord than mine is.  I will fill a few rows, maybe.  That's just how my life has unfolded.  My journey.  Circumstances prevented me from touching the lives of others as I might have for over half of my life.    And now, at age 50, I just want to say, I count.  Even though I'm not a mother.  My life counts.  Even though my progeny will not fill any pews in any churches at the time of my death.

Maybe "the most important thing you ever did" shouldn't be raising a child.  Maybe it should be focusing on one's own emotional and mental health enough so a maladapted and emotionally stunted child doesn't get raised.

I'm blessed this year in ways I couldn't have dared to hope for.  I feel well.  I've discovered adaptations and management techniques that have kept me feeling this way for most of the last year, which is a record since 2005.  Holidays can be a difficult time when everyone who we're related to and love isn't present to celebrate with us.   I think we all feel the sting of love turned to grief especially at this time of year.    But, if you know folks like me in your world, maybe speak a bit less about how your life would be meaningless without your child.    Because my life is without one.  And I am equally meaningful in the only eyes that matter.  His eyes. 

May you all be blessed,
Marie