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