Forty Days Later

 This post might ramble.  Bear with me.  

I am 40 days into taking activated folate (I actually take an activated B-Complex).  It is not a cure, nor did I ever expect it to be.  (There can only ever be a treatment when a disease is genetic.)  I'm not "Ehlers-Danlos-free".  And my quality of life has not been so high since 2008.  

Firstly, I can think.  Clearly.  About abstract stuff as well as making decisions and carrying out tasks.  I can drive, shop, manage finances, all of that stuff  for which I need a clear head.  I have not lost that ability for one second in these 40 days.  

Secondly, I'm rarely in any pain at all.   And during these 40 days, when I have felt physical discomfort, reminding me that I still have a "thing", it has been low on the pain scale, only up to a 4.  Only twice in 40 days have I reached for a brace or supportive sleeve for a joint.  My assistive devices, canes, rollator, wheelchairs, are piled in the guest room closet.

Thirdly, and with the MOST IMPACT on my life, I don't get migraines like I did before.  Here is some data from my MigraneBuddy app.    In the last 40 days, I have opted to use a triptan for migraine only 5 times.  Intensity of those headaches averaged 3.1/10.   Duration averaged 2 hours.  On 6 other days, I had minor headaches which Advil cured quickly.  A total of 11 attack days.   VERSUS  the 40 days before I began treating with activated folate:    In the 40 days pre-folate treatment, I had 28 attack days.  I used triptans 17 times.   Intensity of those headaches was averaged 6.8/10.    Duration of attacks lasted average of 14 hours.  

This last paragraph is the powerful one.  Read it again and see if you don't feel like you've been set free from prison too!  

I think I have a decent grasp of English vocabulary yet, I stagger to try to find words to express the depth of relief I have.  Not only physical relief from not having my sweet body exist in pain, but mental relief that I don't need to be on constant guard, and emotional relief that I can breathe deeply and know that I am ok.  Relief that my life is not about daily survival anymore.  There are options and choices open to me now which weren't in the picture 41 days ago.  I wake up smiling.  Yeah.  Imagine.  

While I know that at any time, my issues could express themselves newly and differently, I live with no anxiety about that.  I am FEARLESS.  Whatever comes, I can handle.  That has been proven and will be again.  

Here are some practical changes that I've been able to undertake.   I don't have to have a hat on every time I'm under open sky.  I don't have to double-up on sunglasses.  I don't have a thick gigantic piece of black felt over my "blackout curtains" in my bedroom.  I don't need to take at least half of the prescriptions I'm on, and I'm currently reducing dosages on several (medical professionals involved, no worries).  I'm strong enough to pick up my 55 lb dog and carry him outside safely.  I can choose to go to the church service with music and heavy attendance without worry that the loud organ or generous perfumes will send me into a migraine and/or tailspin.  I can help others.  I can remember things.  I can learn.  I am reliable.  My physical body and my mind are RELIABLE.  

Here is some backstory as to what happened in 2008, and why I felt this good that year.  In Dec '07, I was still very much undiagnosed and without a doctor who was interested in helping more medically.  It was up to me to figure things out.  I discovered that I might have a vitamin B-12 deficiency so, I started taking activated B-12 called methylcobalmanin.  (Some genetic testing revealed that I have MTHFR mutation which means I don't have the necessary enzyme to break the cyanide molecule off of the standard B-12, cyanocobalmanin. ) In 3 days, I was free of every kind of discomfort.  For 14 months, I LIVED.  I went back to college finishing my Bachelors degree and moving on to the PhD program.  I did an internship. I got married.   I taught as a GTA.    And, the day after Spring Break in '09, every single kind of pain and problem returned.  I returned from the break, our honeymoon in Gatlinburg, to teaching my classes from my wheelchair with a very foggy head.  My solution, or what I'd thought I'd figured out, was defeated.  I had to leave school and live in a constant state of pain once again.  But, for a little while, I had a blissful reprieve.   This is the reason I bought in to the news of methylated folate right away.  I'd been using the sister B, B-12 in a methylated form and had fantastic, drastic results.  Now, I take a B-complex wherein each B vitamin is activated for me.    

I want to urge any who have migraines, not just fellow EDS patients, to try methylated B vitamins.  There is little danger.  There is little to lose.  If a MTHFR mutation is known, this is a gigantic tool in your toolbox.  If the mutation is not present and methylated B is taken, you could feel side-effects.  Personally, I recommend doing the inexpensive 23andme test to find out if you have that particular mutation.  That way you can treat it definitively, or not.  There is an upper limit to how much methly-folate is appropriate.  Manufacturers make sure those of us who need it don't overdo the dosage.  

I never thought there'd be an appropriate treatment for my particular disease available in my lifetime.  And it never occured to me once that it would be so readily available and inexpensive as vitamins on Amazon.  

Hope Springs Eternal.  

Blessings are EVERYWHERE.  Be open.  Look for them.  

UPDATE:  The research indicates that the MTHFR mutation may be only 1 possible cause of HEDS out of a variety.  So, not definitively the only cause.  But one that can be treated.  

Treatment for Hypermobile EDS

In April 2023, Tulane Medical School released the news that the genetic marker for hypermobile Ehlers-Danlos Syndrome has been identified.  The cause is now known.  Which also means the treatment is now known.    I didn't stumble across this information until August 2023.  I hadn't gone looking for new research into my illness.  I hadn't held any hope that there might be a treatment for it in my lifetime.  I stumbled upon the article.  

I believe in the treatment because I've had a personal experience with a "sister" treatment.  In 2008, during my long stint as undiagnosed, I thought I'd figured out that I had a B-12 deficiency.  I took methylated B-12 for 14 months.  I was WELL for those months.  I finished college.  I got married.  Many, many joyful memories.  But, a flare brought everything crashing down and soon I had to drop out of the PhD program and allow for my illness.  I was left thinking I must've been wrong about the vitamin after all.  

Now, the treatment identified for HEDS is methylated B-9.  Which makes so much sense to me.  And I have so much gratitude that the answer doesn't need a prior authorization, or an office visit.  It's not an experimental drug or an expensive test.  It's an over-the-counter, readily-available vitamin.   In the research, it is still being labeled as a "possible cause and possible treatment", of course.  But, I have memories of how well I was on methylcobalmanim.  I know this will help me.  How much?  Who knows?  If it can reduce the number of days I have to have a migraine, I win.  If it can reduce some dosages or even some medications altogether, I win.   Even if the hope of improvement positively affects my quality of life, I win.  I just WIN.  And keep winning.   

I do have the MTHFR genetic mutation.  I have been taking the methylated folate for 9 days now.  I've had only 1 migraine in that time, which did respond to meds and only lasted a few hours.  I feel WELL.  I feel like MYSELF.  

I don't have any way of knowing if a flare of symptoms will break through my new-found wellness.  It certainly could, at any time.  But also, it might not.  That right there changes life.  It might not.  If it does, I'll be able to handle it as I've been living with the disease untreated for 18.5 years.  But what if there's not another flare?  What if this nutrient does everything it could??  What if?  

I have felt zero pain in the 9 days on the vitamin.  None.  I can think clearly.  I can digest food more easily.  No anxiety.  Just the one migraine that was only a 5 on the scale and lasted only a few hours.  

Fellow Zebras, there is no reason not to hope.  We're being studied.  We're being helped.  

Blessings are EVERYWHERE.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10122021/

https://www.painnewsnetwork.org/stories/2023/4/12/researchers-find-cause-and-possible-treatment-for-hypermobile-ehlers-danlos?fbclid=IwAR3sU-xGgzgRvAuIaUNmTo7mUu_jsKjdQ8e3E4dymp2OcWnuZI8LyXKfpb8

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

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

And she ran....

Well not really running, running.  Not like trying to save myself from a bear.  Just three mini-steps above speed walking, but, still firmly in the jogging category.   

It happened this morning, completely spontaneously.  I didn't work towards it.  It wasn't a goal.  I just listened to my body speak, and it said "let's run, let's play".  So I did.  I had both dogs and I broke into my run so often and for so long that my little dog got worn out.  She's got short Corgi legs.    And it was thrilling.     Ab.So.Lutely. Thrilling.

Three years ago in November,  I'd frequently walk my dogs from my wheelchair, clipping their leashes to the chair.  We'd pretend they were sled dogs, lol.  I'd sing Jingle Bells at the top of my lungs and make up dog-related lyrics.  Two years ago in November, I couldn't even leave my bedroom because of the multi-month migraine that struck.   Last year, I walked a half-marathon.  This year, I ran.  And, it's not over.  There's still 11 days left for all the fabulousness. 

It's been a lovely fall.  I am back to volunteering weekly at Children's Health as a pal for any patient who is alone.  Last Thursday was all babies.   I have begun volunteering on behalf of animals now, as well.  Twice a week I dedicate time to their cause.  Monday nights, I help the Trap-Neuter-Release program in my town by going out to feral colonies and setting traps and helping take the kitties in to be sterilized the next morning.  On Friday mornings, I assist the photographer at the shelter, interacting with dogs who need to be photographed.  I usually stay at the shelter for another hour or more after pictures are done, walking dogs, and socializing with cats.  Some Saturdays I go back and spend another hour of so with them.   I'm enjoying it and feeling that I really am helping those creatures on the days I'm there. 

I was inducted into an order at my church last week.  To be included after so long involuntarily excluded, there are few words to express the depth of that value.   To be known, after being so isolated and unknown, a gift. 

I'm taking greater care of my emotional health.  Really making firm boundaries about what I allow in my world.  This only causes me to be healthier and feel better.  There is no negative to emotional self-care.  Some would argue this point.  Boundaries can be built for many reasons, but generally not amidst poor physical and/or mental health.  Now that I'm not suffering and struggling daily, I can, and have chosen to take care of myself.  Of my heart.

It is a joy to be able to report such a life here.  I have long ended my posts with gratitude.  The thing I'm most thankful for today is my faith.  Faith in the Lord, the He will see me through.  That some way, some how, He will provide.  And faith that He hears my prayers for each of the many very helpless and vulnerable lives I visit every week, human and animal.  And faith that prayers for me are heard.  And faith to be free from worry and fret.  To be free to know that I will do what I can, and the rest, I will pray about.  And that is enough. 

Have Happy Days!

One Random Night and my Faith

Have been feeling well and high-functioning for months. Many months. Have taken on additional volunteer duties, and enjoying my quality of life.

Here's how severely pure adrenaline from my own system can affect me. Drove myself to a meeting at church yesterday in the evening. (It's only a 17 minute drive on Sunday morning, when Tim drives us. But I drove myself yesterday, which means that I avoid the interstate, and it took all of 45 minutes, in drizzly, dark fog.) My hands, wrists, arms ached from holding onto the wheel. That drive was very stressful. Then I sat in the church which is cavernous, as churches tend to be, and all the voices chatting just roared as if they were, I don't even know what. I had to put my fingers in my ears until the meeting began. I sat in so much pain, thinking all the while, "I can't believe I've gotten myself into this situation AGAIN. I'm in too much pain to drive myself home. I'm nearly in too much pain to walk to my car. All the years of coping, adapting, learning, etc, and here I am AGAIN, a victim of this. I should have just stayed home where I'm safe." BUT IT WASN'T TRUE. It was temporary weakness, my doubt in myself, bullying me into believing that I would not be safe. And safety is about faith. I prayed while I sat there, listening to the questions and answers about where to walk during service, and when. I asked for His provision. I asked to be granted safety getting home. I breathed deeply. I rubbed my sore body to encourage as much circulation as I could. Thankfully, a migraine hadn't been triggered. I got up and was first out the door when we were released. You'd think that meant I got to my car quickly. But it didn't. A gentleman even came and gave me his arm, quite kindly, helping me finish getting myself to my car, as it was clear I was struggling to walk. I knew that I had to sit for a while. I had to have patience, let the stillness and quiet of my car try to calm all the adrenaline loose in my bloodstream. In a good deal of pain, both hands really struggled to grip the wheel. Then I remembered that I have safely navigated these shores before. I have been "at the mercy of my body" many times, and never has He forsaken my safety. He gives me enough mental clarity to care for myself or ask for help, and I have not suffered more from having this happen outside home. Its just terrifying. And then, the terrifying adds to the mix of chemicals in the blood. Adding to the pain response.

Another stressful drive home, and couldn't string any words together to Tim upon arrival. I felt defeated but, clearly reality showed that I was not. I was home. Safe. Nothing amiss. But there was still pain to deal with and all that goes with it. Took my nighttime meds and did my nighttime therapy, and went to bed, my mind not in a good place. Had nightmares about not being able to live independently, not having resources I need, not being heard, not being valued, being in danger..... etc. And I realized this upon rising, all those issues I nightmared about, equal a lack of something. But, if I have real and true faith, not just surface faith, but the deep stuff, I cannot fear those "lacks of", not really. I will know, as a result of my faith, that some provision will be made for me. Something I have not thought of will be put in my path to guide me through. I sat at the meeting in fear, talking myself down from a great deal of anxiety response to pain. But, here I am the next morning with nothing at all amiss. I think physiologically reacting to pain response is inherent. And I know that my body dumps adrenaline into my blood at remarkable levels, which I cannot filter and process. That being said, it is quite easy to convince myself that if I would have stayed home, it would have been prevented. And it likely would have. But I would have been excluded. The only way to become known is to show up. And not to worry about the state of my being upon my arrival. I won't have an isolated life again. I've had that and I take responsibility that inclusion is up to me. And coping with my body and its many responses to environment is up to me. But they don't have to be separate. It is difficult, often, but it is worth it, being included. It's not my fault I have to deal with this. It is my responsibility to deal with it, thought. That makes me empowered, not a victim of it.

May you be blessed,

Marie

Adventures on Hold Indefinitely

12/25/18

Well, I have been in relapse mode for 3 solid days now.  I know that doesn’t seem like long but, goodness how I miss my brain.  Just a few days ago, on the 21^st, it was my 50^th birthday, and I can remember being at what felt like the height of all my abilities in my life.  I was more physically active and stronger than I’ve been in so long.  I was sharper and able to quickly solve problems and was mentally fearless.  This quality began to return in September but came into its fullness in October.  I was functioning at 100% of myself.  I think, anyway.    But now, I think I’m at about 50%, maybe that.  I’m in constant pain.  Different areas.  Different kinds of pain.  Stuff that’s hard to treat.  Palliative only goes so far.  And its enough pain that sleeping meds are required again.  I’d been really enjoying sleeping with the melatonin spray only.  I’m not driving again.  Dependent, relying on others.  I’m not able to lift all the things in the kitchen to make a dinner.  I’m not able to have the same kinds of conversations with anyone that I had just 4 days ago.  I had to call pasta “that noodlley food with sauce” tonight in chatting with Tim about the grocery list.  I have very limited vocabulary, and very long waits to use even my primitive words.  And I’m not sad about any of those things recurring.  Here’s what I’m likely to become sad about.  (Thank goodness I am still on my anti-depressant, even though I tried to get my doc to let me come off it in October.  He said, wait until the holidays are over. )  I have a new volunteer position as a Patient Pal at Children’s Hospital.  I go to the rooms of children and babies who don’t have anyone to be with them and I keep them company.  I hold and soothe babies.  I play games with children.  I chat to and sing to them.  I can’t do this job with this kind of brain power limitation.  I will have to stop until I have proper problem solving skills again so that it will be safe for me to be alone with of a tiny sick human.  Even for 45 minutes.  This is a loss.  I worked to gain it, and its something I hadn’t strived for or achieved before.  And now, it is snatched from me.  No more babies.  No more Thursday outings on the train.  No more adventures.  It isn’t safe.  It isn’t prudent.  I got to do it only 3 times.  Once as a shadow, and twice in my own shifts.  I think I will get to do it again someday but, I have no idea when.  But, I’ve decided to just allow myself to feel sad about losing this thing that I love.  That’s my process.  My grief.  You cannot know how exciting it was to ride on a train and spend a day with several other people, trying to spread some of your cheer and hope, after having been fairly home-bound for so, so long.  Now, I return to that dependence.  To having constant pain as my companion.  I’m honestly almost ready to ask for my right lower leg to just be chopped off already.  It hurts that bad.  It’s humbling.  But, I feel proud of how many good things I did in my good days.  I began a huge EDS Awareness project, and have a group of folks who can pick up my slack in the work now that I’m making big mistakes.  I joined myself and my spouse in a church.  (That’s a weird sentence structure, lol.)  I made sure every person I care about heard from me, even if only through a message, and of my love for them.  I will be able to pick this up someday.  I don’t know when.  And I miss my other vibrant, dancing, smart self.  She is a joy.  She is confident as hell.  She is fearless.  She doesn’t not smile, no matter what.  She is curious about herself and her feelings and her motivations.  She tries.  She tries hard because she had the spoon plethora to do so.  Now, a spoon shortage again.  Please let me survive with a smile. 

Synopsis of Renewed Health - 2018

Whoo, I’m in a lot of pain today.  That whole sentence has different meaning this year than in the past 13 or so years. 

Historically, when seasons change, that puts me in a wheelchair for a bit.  I’ve been so sensitive to the barometric pressure fluctuation and temperature changes that I just sort of shut down.  I suffered, truly, when there was a thunderstorm.    I thought it was just par for the course.  I was wrong about that.    I’m hurting today as a result of the weather but, today, I can function.  I’m in pain, yes.  No wheelchair though, and not even a cane.  Just aches, pains.   I did take the day off from my long morning walk due to my pain and the rain combo.  And I’m in full compression.  But, I’m not in tears.  I’m not pulling my hair out.  I’m not praying for relief.  It’s not bad.  It’s annoying, and I don’t want it to get worse.  But I can live with it. 

It’s remarkable how I have changed the internal makeup of my body with a few therapeutic interventions that I stumbled onto.  I more than doubled my salt intake.  That allows me to be active.  I was exercise intolerant before, and it was because I couldn’t retain salt and wasn’t replenishing enough of it.   Of course, I didn’t know that.    I’d get dizzy, my vision would grey, I’d get wobbly, brain-foggy, weak.  All due to a too low blood-pressure, due to the fact that my cells don’t retain salt.  How can my brain work correctly if there’s not enough blood pumping to it?  Well now, I’ve got perfect blood pressure on a minimum of 9g of salt a day.  Every half hour, after the first hour, of sweaty exercise, I take another gram.  It’s THE recipe.  I can tolerate hours of sweaty exercise like this.  Because of this. 

Also, I have fully integrated my walking exercise into my life.  My personal distance record is 7 miles.  I reached that record in just 2 months of work.  I was tired at the end of it, but not unduly worn out.  I wouldn’t have wanted to continue.    I’m keeping joints stable while I walk.  Both knees are braced, and both feet have compression.  The sweat-wicking pants are compression too, and that’s great for circulation.  I’m detoxing in my sweat, which I hadn’t done for so many years.    I have confidence in my body again.  I can rely upon it.  It is more predictable, and stronger.  And my dedication to my exercise screams of self-love.   I’m devoted to having as good a life as I can have. 

Another big reason I’m feeling only annoyed by pain today is all the detoxing.  Some is happening through sweat, but most is happening through coffee enema.  This does sound fairly wacky, and it did to me too, the first time I heard about it.  It took me another year after that first hearing to consider actually doing it.  But, now I am absolutely convinced that it relieves my pain.  And the removal of so many toxins has lowered my sensitivity level.  Exposure to most stimuli that would’ve caused me pain before is now innocent at best, and annoying at worst.  I tolerate odors, though I do put on my peppermint mask when I’m in a car with a scent.  I tolerate sunshine and light bulbs, though I do usually wear my sunglasses.  I tolerate touch without pulling away.  I tolerate sound without feeling like I’m going to explode.  The suddenness of some loud dog barking at the front door doesn’t make me feel like I’m going to vomit.  A bumpy car ride is not something to be endured anymore.   The temperature in my home can be normal instead of cold.   I don’t use my weighted blanket to sleep anymore.  It feels too heavy now.   I can no longer hear buzzing of electricity in the walls.  I can sit in a busy, loud restaurant, and have a conversation with a friend.  All of this because I brought my sensitivity down.    I did this with coffee enemas.  They detoxed me.  I live without fear of migraine happening because I have a reliable treatment for headache pain in them.  This opens up my whole world.  I can socialize longer than I used to.  I can eat different things.  I can stay up a bit later.    I can walk in the daylight.    Anxiety-free.  Because I have an effective tool if my head starts to hurt.  And since my sensitivity is lowered, I don’t get migraines anymore that onset in 5 minutes or less.  Headaches begin small and build slowly over time.  Headaches are reasonable so that my migraine medicine works for me if I’m out of the house.  (I usually do carry an ice hat with me when I leave the house, just to stay comfortable, when one comes on.)  This has changed my life.  I’m not afraid to live because living might give me a migraine.  That’s a real fear.  I don’t have it anymore because of this treatment.  So, however wacky it seems, look at all it’s given me.  More than any medicine any physician ever prescribed.  Inflammation is down.  Keeping it down.  Some folks do this detoxing via sauna.  For me, this works beautifully.  I’m sticking with what works. 

Continued chiropractic care is vital as well.  If I’m ever to be free of headaches, my neck curve must be eliminated, if not re-curved correctly.  Daily exercises to encourage this are ongoing.  It was this care that started me feeling well enough to introduce the other things I’m doing.  It was this care that began the snowball effect I’m loving right now. 

I reflect now upon the last 13 years or so and I understand that the only reason I feel so well now is that I have the correct diagnoses for my conditions.  For years, I couldn’t exercise because I felt like I’d pass out.  Well, that problem is eliminated knowing I need to take salt.  When pain occurs, I now understand what is most likely causing it.  This takes all the emotional reaction out of the picture.  I can just problem-solve.    The other day, I got up from a table at lunch with a friend, and I felt my left hip sublux.  That’s like a soft dislocation.  For a person with healthy ligaments and tendons, a dislocation would only happen after a blunt-force trauma because their joints are held together so tightly.  My connective tissue is too loose.  So, my joints can slip.  This is subluxation.  In the past, when I didn’t know what the hip pain was, I coddled it.  I used a wheelchair so I wouldn’t disturb it more.  I took the weight off it for many days.  Sudden events like this have left me on the floor of shops before.  But the other day, I felt it happen and I recognized it for what it was.  And I worked it back in most of the way.  I didn’t have a cane with me to help me walk, so I hobbled out of the place.  Ten minutes later, walking through Target, I felt like the joint was 90% stable again.  I was walking ok.  I had some pain in my hip and down my leg, but I was strong and could put weight on it just fine.  The next morning, I walked comfortably 5 miles.    You see, all the extra muscle I’ve built kept the joint from slipping as far out as it might have in the past.  And my confidence about my ability to handle the situation was also high.  And my pain tolerance is high because I’ve brought my inflammation and sensitivity down.   So, I handled something easily that previously would have floored me.  I was sore the next day but nothing more.  I know what happened.  I handled it.  No problems. 

Every human body is unique from every other in the details of its chemical balance, its strengths and weaknesses, its ability to express what it needs.  The key is to listen.   And a knowledge of what to listen for.  After I understood how much salt I needed if I intended to try to exercise, it was doable.  Now that I understand my knees are wobbly by their very nature, I support them so they can comfortably tolerate my activity.  An open mind is key.  If I’d been too small-minded to try detoxing via coffee enemas, I’d still be highly-sensitive. 

What I have, Ehlers-Danlos Syndrome isn’t curable.  But, I am living a quality of life now that I didn’t think was possible for me.  In fact, I never even hoped to drive again.  But last week, I drove myself to my nail salon and home.  That little nugget of independence regained, HUGE.  Now, I’m not out on big roads or interstates, and I may not regain confidence on that level ever, but, to be able to drive myself anywhere is a very big step. 

All my medical doctors I have been to since my improvement have said “keep doing what you’re doing”.  So, I will at least follow that “medical advice”, knowing that was what I’d intended to do anyway. 

UPDATE:  New personal distance record is 8 miles.  Done yesterday, 9/30/18.   All miles in daylight.  No sunglasses or hat.  Just me and the blissful sunshine.  My chiropractor had teary eyes when I told him and we celebrated it this morning.  “Your testimony makes me love my job” he said. 

Delightful Visit to the Doctor

My primary care provider is a nurse practitioner named Janet.  I saw her yesterday.  And she could not stop smiling at me.  I couldn't stop smiling either.    The last time I saw Janet, I'd confessed that I'd asked a stranger to push my wheelchair one day at a large hospital complex when I ran out of steam.  She prescribed a power wheelchair that day.  It's in my dining room.  I used it 3 times, but I'm a good steward of it, keeping it charged so it will remain useful.  That was in January.    It's now late August.  She'd never seen me come to her on my legs with a cane.  And she'd probably only ever seen me without a migraine a couple times.  And she'd not ever heard me tell her that I didn't have any pain.  We just giggled like we were in the 5th grade.  It was fabulous.  I know that it made her day to see me doing so well.

"Who has got you feeling so well?"  Meaning, which doctor has made this happen?

"I did.  I did all this.  Myself. "  Meaning, I OWN this.

"What are you doing?  What about your pain?"

I told her briefly about the neck curve and the chiropractor who I see 3x a week diligently to help correct that.  I told her about the coffee enemas.    I told her about the walking.

"So, coffee enemas changed your life."

"Yes.  Coffee enemas changed my life."

"Tell me about them so I can tell my daughter."  As she grabs a notepad and makes notes.

I told her how I stumbled onto them, how a friend mentioned them about a year ago, and how I really tried them as hope for migraine relief.  The surprise that they'd help reduce inflammation so much that my physical pain is reduced was a ginormous and unexpected bonus.    I told how you have to use the small red tube to get the fluid 8" deep and retain it right there so that all that caffeine can have its 15 minute effect on detoxing the hepatic vessels.   Hold 2 cups for 15 minutes, back to back, or hold 4 cups for 15 minutes.  I explained how this treatment was a 100% reliable migraine reducer for me.  It has never yet failed to reduce a headache.  I do one every 12 hours, and if I get a headache in between, I do a third one that day as treatment for it.    It has literally given me my life back.  It has helped to reduce inflammation to such a degree that I'm no longer hypersensitive.  I tolerate environmental stimuli decently.  I can handle some sunlight.  I can walk.  I frequently leave my house without any mobility aids.  And, I have my whole brain back.  I can think.  I can remember things.  I function. 

She has addressed every need I have presented her.  Whether or not she could prescribe what I needed or wanted, as an NP, she made sure she helped however she could.  But, Western medicine has not been the answer for me.  And she couldn't wait to tell her daughter about it.    That is priceless.  If her daughter has the courage to try them, and her pain is in any way similar to mine on a causal level, I have helped change a life.  As the mother of a woman who lives in unexplained pain, she recognized that if this unconventional, wacky-sounding treatment brought forward the Marie now sitting before her beaming, a version of Marie she'd never before met, she wanted her precious daughter to know about it.  It reduced nearly all of my inflammation.  The new activity level reduces an awful lot also.  Between the two therapies, coffee and walking, I am set.  I am energetic and motivated, and interested in the world at large.   All any of us want is to live well, and for those we love to live well.  I so hope I have helped her and her sweetheart to live better.

The Best Doctor Visit Ever.

She prescribed a rigid hinged knee brace for my left knee subluxation.  I will be able to wear this and continue to grow muscle in my leg while the joint will be prevented from moving laterally and from hyper-extending.   If this one works for me, then we will get a similar one for the right knee, also.  When I told her that last week one day I did over 20,000 steps, she stopped typing and just turned to me with the biggest, brightest smile, and shining eyes.

She wants to see me in 3 months, to see how much better I am then.    Words I've never heard a doctor say.

Grateful.  So, so grateful.

This Is Unbelievable

It's 3 weeks into walking every morning and doing my coffee therapy twice a day.  How good I feel cannot be understated.    Now, I simply will always have parts and pieces of me that are uncomfortable and painful, that is down to the weakness in my collagen at a cellular level.  I'm wearing knee and foot compression sleeves.  I'm sitting with my knees bent propped on pillows so I can keep them properly flexed.  I have a low-simmer headache.  ( It was about a 5 an hour ago, but I did my therapy, which reliably, predictably, brought it down to a 3. )  But, I honestly cannot remember what feeling this good felt like.  So, here I am to document it.  The reality is that it might change.  And if it does, when it does, I want to be ready to look here to read the proof.  Because that means it could change again for the better. 

Yesterday, during the walk, Tim said "You seem to be doing much better cognitively."  Those 8 words are the equivalent in excitement as if he'd said, "You know, I have booked a private plane for us to travel to Paris with the dogs and you can bring however many friends and family you'd like to.  We also have a private chef traveling with us."  So, yeah.  Being able to think clearly is sorta like being born again.  There's no thick clam chowder in my head to swim through.  It's clear chicken broth all the way.  Yes, now and then I do hit a noodle or a veggie, but, I can maneuver around it easier and quicker.

Also yesterday, at the Target before I had my eye check-up and picked new glasses, I bought lip gloss.  Yes. I spent $7 on frilly, girly, silliness because I finally feel girly and lip-glossy again.  I honestly never thought I'd see this day.  And I'm wearing it now, although I'm not leaving the house today, and T won't be home for 8 hours.

I have decreased my sleeping med from 7.5 mg to 2.5 mg.  In another few days, I'm going to try sleeping without it.  I don't have any pain when I lie down for bed.  I don't use my weighted blanket.  My nerves are calmer.  I don't hurt.

I blow-dry my new blue shaggy bob with bangs haircut every day.  I have blown my hair dry more in the last 3 weeks than I have in the last 5 years.  Because I can hold a blow dryer without pain.  It doesn't bother me.

I shower.  Not a bath.  A shower.

I have energy before bed to clean my kitchen and do a quick hand wash of whatever pots or skillets I dirtied for dinner.  I get to wake up to a clean kitchen.

I cook.  No more frozen meals.  I can cook.  I love to.

I make my bed.

I am putting thought into where I might like to volunteer one day a week, the library? a nursing home?  animal shelter?

Activities on-deck:  Co-sleeping with my spouse again.  Church.  These can't be overstated in their meaningfulness in my life.  Being married, but having to sleep alone is hard.  On both parties.  And, when you want to go to church, but it is literally too painful of an experience to have, well, that just sucks.

I'm going to call my psychiatrist this morning and inform him that I'm going to try a few days with a half dose of my anti-depressant.  I have an appointment with him in 2 weeks, so, this will be an excellent time to give this a shot.

I'm interested in people again.  I'm listening to these storytelling podcasts, and I can't get enough of them.  The Moth.

I do a moderate amount of housework every day.  Floors.  Kitchen.  Bathrooms.  Any one of those things would have taken days to do alone just little while back.

I have physical confidence again.  This is literally the ability to know what my body is capable of doing at any given time.  I am trusting it.  I am still taking premium care of it, but now, there is less to do, because the issues are diminished.  With so much inflammation reduced, I'm no longer reactive to environmental stimuli as I was.  Strong scents still bother me, but, I put on my peppermint mask, and I'm ok.  I can tolerate the situation.  It doesn't always make me worse.  My nervous system is no longer on high-alert so, I can tolerate some non-shaded sunshine.  I can.  I. Can. Be. In. Sunshine.  Just take that in for a minute.

My gratitude for the above, and for how it impacts all those who love me, including these 3 critters, cannot be measured.  Impact causes waves, ripples.  And we all make impact, whether purposeful or accidental, on those around us.  And the impact I make now, well, lets just say, I'm the Marie I was meant to be.  I make sure of it.  I put effort into it.  Because this might not last.  And I am going to soak up every single second I'm given, and I'm going to try to live so that others may know God by witnessing my light.  And "Those who keep trying can never be defeated".  A Hindu quote I heard on today's podcast.

I won't be defeated.  I will thrive.  My gratitude is inexpressible with this finite English language, she types, as her eyes are full of tears of joy.

Wishing His Blessings.

Sweeping Change

So, over the last couple weeks, I have implemented a few changes.  I'll list them later but, suffice to say, the combo is working.  I feel more functional, have more energy, good, stable mood, low-level headaches, manageable physical pain, and more cognitive skills than I have had all together at one time, in years.  Years.  Honestly, I don't know if it will all hit a wall again and in spite of my new changes, I'll find myself feeling pretty limited again or not.  For today, I am enjoying life, and I wanted to document and share.  So often, I write in report of pain.  Today, I write in report of joy.

I am trusting my body again.  With less physical pain to interfere with the actions I ask of it, it performs the tasks I want it to perform.  Easily. Comfortably.

I feel happy.  All The Time.  I rarely stop singing.

Yesterday was a test for me because I had a therapy appointment in Dallas.  The last time I went on the paratransit bus without a wheelchair was a disaster.  It was 2 years ago this month.  Those memories have kept me conservative, using my chair for those trips even when I didn't feel like I necessarily needed it.  Just wanting to have access to it out in the world in case I did.  Not able to trust my body to behave predictably.  If I travel under 10 miles or so, I usually use a ride share car.  But, most of my doctors are further away than that, and I save my household a lot of money by taking the paratransit bus.  Using this service helps me feel like I'm contributing financially.   The appointments must be kept, especially my therapist.  Anyway, I digress.  Yesterday, I went with only my cane.  And it was successful.  I implemented all the tools at my disposal to keep myself  as comfortable as I could be on a fleet vehicle.  I used breathing and humor to help me through situations that could have made me hold tension.  I arrived there after having a lovely conversation with Stephen, a driver I know well, who had never seen me walk before.  Had a lovely session, reporting my positive direction changes and discussing each.  The ride home included a wait for 45 minutes, which I did inside the waiting room, since the building has no indoor benches, and the outdoor bench was not a good choice.  While I waited during the last 10 minutes or so, I walked up and down the stairs as many times as was comfortable.  FitBit says it was 12 floors, so 6 times, I guess.  The bus brought me straight home.  And I went right into cooking dinner.  I didn't need to lay down, to nap, to rest, to recover even, at all.  I felt fine.  Minimal head pain.  I enjoyed the whole evening with Tim and the dogs and Norway.  I could get up easily from the couch for all the little reasons that arose.  I wasn't uncomfortable.  That has never happened before.  An outing on my legs was successful.

The courage it took for me to try that was big.  Really, really big.  Courage comes from knowing you are doing something from which failure will be very uncomfortable, whatever that means to you.  I have summoned courage many times in my life.  And I'm so pleased I mustered it again yesterday.  Now, I have a successful historical experience to draw from as proof that it can be done.  It has been done in the past, so it can be repeated.  My courage is sound.  I am brave.  I face stuff.  And I'm so proud of myself for it.

I'll list my changes now:
1.  Commitment to walking a half-marathon in Novemnber 2019.  This decision was inspired entirely by Lara Bloom in London.    I began making the decision to try this before the her documentary, Issues With My Tissues was finished.  At the end, I decided to go for a half-marathon, and knew that I had well over a year to train myself for it, a totally doable goal.  I walk every morning at 4am with my spouse and dogs.  I'm not relying on my cane, just carrying it, except for one random armadillo vs dogs moment.  I've learned to take extra salt the night before, to take care of my plantar fascia, to salt again before I leave the house, to wear my ice hat and Frogg Towel while I walk, and to TRUST myself.  I have a FitBit which shows my data.  And I love doing this.  I pop up out of bed at 3:50am to stretch for a few minutes and get my gear on and leash dogs while T readies himself.  Then we walk.  And I love it.  Being up that early is fabulous.  My day is reinvigorated.  My body is active again!!

2.  THIS MIGHT BE TOO MUCH PERSONAL INFORMATION FOR SOME:  After the first sentence, you'll know whether or not you need to skip to 3.
I do coffee enemas twice a day.  8am and 8pm.  For a while, I don't have a goal in mind, I am taking the workload off my colon.  This has minimized my migraines even more than the chiropractic work.  I can reliably do ce and bring a headache down 2 notches on the pain scale.  I have been able to do this day after day after day.  Reliably.  And the energy I feel because of the detoxing is unbelievable.  My level of energy might be what it would be if I didn't have chronic illness.  And because of the detox of my hepatic vein, and the additional salt in my blood, I can THINK.  I didn't know the secondary effect of doing this was that my physical pain would be treated.  I am doing very well on that front, too.  I am walking, confidently.  I am going on outings without my cane.  I only brace my knees, recently.  My body feels fairly decent, much of the time.   Cancer patients very often turn to ce as the treatment for pain and toxin removal.

3.  I have omitted 3 things from my nutrition.  I took a food sensitivity test, and it came back showing a severe sensitivity for a few things I never eat.  But tea was on the list.  So, it's gone.  Beef was on the list of moderate reaction.  Beef, gone.  I have had it a couple times and on both instances, I didn't feel as well as I might have afterward.  And HFCS, which we all should avoid, shows as highly reactive for me.  I'd been drinking G2, diluted and salted as my main hydration throughout my days.  That is out.  Now I have a sugar-free, chemical free option. 

4.  Increased salt intake.  I was taking 4 g salt tablets daily, in addition to what I put in my drinks and on my food.  That is what was originally recommended for me last year by my nutritionist.  I need more.  So, I slowly increased.  Now, I'm up to 7g a day, which is still below the 8-10 g POTS patients usually are told to have.  I feel such improved mental clarity.  I know it's because of the salt.  I don't retain it.  I must consume an excessive amount for my body to function.  And the more active I am, the more I walk and sweat, the more I will need to consume.

So, my symptoms are all at a simmer, rather than a roiling boil.  Headaches are cooking at a heat a bit above simmer, but still are letting me get on top of them with my various treatments, and have a functional life.  Physical pain is quite low.  Depression and anxiety are non-issues.  I stopped Botox treatments when CE turned out to be effective and reliable for me.  I see good things all around.

I am just grateful for my COURAGE to try these changes.

Feel well and happy,
Marie

Self-Love Epiphany

This is very personal, but I'm sharing because it helped me.  Hope it helps someone else, too.  It refers to my late sister Monica.  She passed in 2015 after fighting 5 years with breast cancer.  Finally, it metastasized to her brain.  I think she would be pleased in knowing how love for her helps me still.  Its likely I will get time lines wrong, because of my own fog, or distance, and I do not make any assumptions to know how she felt during these times.  And I don't compare what I endure to cancer.  Its different.  I want to share this experience with some others who are suffering and don't know what true self-love sounds like.  I figured it out last night. 

Yesterday, I had a good day until about 1pm.  Then my body turned to the "oh, lets let each nerve have a loud voice right now" channel.  I laid in bed, observing myself, my pain, not emotionally connected.  I had pain in my ears.  In the webbing of my fingers, I felt pain.  Everything was turned on.  It was overwhelming.  And, serendipitously, I'm in the middle of a really good how-to-cope-with-chronic-illness book called Chronic Babe 101 by Jenni Glover.  She writes from a place of self-love.  You can feel it in her words.  I needed to love myself during that flare yesterday, I knew that was all there was to do.  There wasn't anything "of this world" that would help.  I intuitively sensed that it would be a short-lived flare, and I just had to endure.  (It is gone this morning, by the way.)

So, here's how I spoke to myself.  Differently than I ever have before.  I remembered my first conversation with Monica after hearing about her diagnosis of breast cancer.  She had a young daughter and a 6 month old baby.  She was devastated.  As her older sister, I had the phone conversation that you just never want to have.  I got the gift of being present with her in her heartbreak and fear.  I got to say "Oh, honey, I'm so sorry.  I'm so sorry."  I got to cry with her on this end of the line, as she lived in FL, and I live in TX.  I got to have this kind of compassionate conversation ONE time.  Her choice was to protect her kids from knowing about her illness, so I don't remember talking to her again when there weren't little ears listening, so, illness wasn't mentioned.  I got all my info regarding it from my folks, who saw her daily.    They were aware of it at the end, of course, as she became quite sick, and passed at home.  But, I can only remember being present in a place of her pain, that kind of heartbreak,  that one time.   That initial conversation.  So, yesterday, I spoke to myself in the tone of that one phone call.  I spoke to myself, lying in bed, in exquisite, really remarkable pain, as I did that day to my baby sister.  It was love.  Only love.  Nothing else.  Not problem-solving, not fixing.  Not deflecting because of discomfort.  Not judgment of any kind.  Just love.  I imagined how heart-broken I was, and I wrapped my own arms around myself in pure acceptance and love.  I was present with it.  Entirely present.  I honored it.  I didn't try to move it along.  I didn't feel any anxiety about the level of pain, as I have done in the past.  I just let it be there.  I knew, logistically, that my needs were provided for me.  And after T was in the house with me, I knew I had help if it came to that.  So, I was fairly paralyzed in bed from it.  But, there was no fear, no despair, no sadness.  Not this time.  I remembered my Monica.  I spoke to myself as I would have to her.  And it got me through the flare. 

This is self-love talk.  I have FINALLY figured it out.  I'm going to practice it often, so it becomes habit, and pain becomes something that I can exist a little easier alongside. 

So, sweet, sweet Monica, this one is for you.  Thank you for so many things, but most recently, for helping me to remember what love sounds like. 

Have happy days.
M

The First of 2018

It’s been a long time since an update for you five folks who follow me. Lol.  Here is what I have been attending to since October. 

On October 14, 2017, I got a migraine, triggered by the smell of a driver.  That headache stayed severe until I was finally hospitalized on December 10.  Administration of IV DHE brought it down from 10 to 5, and that took all 5 inpatient days.  Shortly after returning home, it was severe again.  I began Botox at the end of January.  Beginning in early February, I started seeing a chiropractor 3 times a week.  My neck was found to be curved in the wrong direction.  Now, in late April, I am not debilitated by headache every day. I take my bath by nightlight.  I still have head pain daily, but it is getting better and better.  I got a second Botox treatment in April, and I continue to see chiropractor.  I am photophobic to the point now of needing tinted glasses all the time.  But, I am progressing.  I have successfully switched away from belly sleeping position.  I am working on the Muldowney Protocol for strengthening and stabilizing my muscles, so that joints can be stable, even though the connective tissue is weak.  I have battled depression this winter, not being well enough to leave my bedroom for over 2 months.  But, I am back in therapy, back with friends.  Progress.

So, you could say, it has taken every bit of my energy just to cope with this particular hand of cards for 7 months.  I enjoy writing here so much.  And I think I do have some valuable insights to share sometimes.  I missed it, but it was impossible. 

I am grateful.  I keep gratitude in my heart, as my treasure.  Today, my head pain is still under a 5, while my body pain is at a 9.  I lack strength enough to hold onto a dish.  My quality of life is so much higher than it was a few months ago.  I have support.  People love me and check on me.  I am blessed.  All my basic care and many luxuries are provided for me.

My good friend and writer, Margaret Schroeder, interviewed me part of the way through the winter.  She did a great job.  It is here.  My first podcast appearance, but not my first interview with her.  

The pain I feel is just connected to my Earthly, physical, carbon-based body.  It is not in me.  Not in my soul.  But, it does limit me.  It does affect my soul.  I grieve. 

I’m thankful that now, with less head pain, I can cry again.  Crying with a severe migraine is a no-go.  Now, I can properly express how sad this occasionally feels.  A good one is coming on soon. 

Have happy days.

M