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

The First 10

Drafted on 10/14/17

Last night was the first time in my journey that I've told a medical professional my pain was at the top of the scale.  They ask, on a scale of 1-10, 1 being not at all and 10 being the worst you've ever felt, what is your pain like?  I've never told anybody, even myself, that my pain was above 9.5.  But last night, I broke that mold.  It was a 10.  And I still wouldn't admit it.  My husband had to sort of give me permission to use the number, making me understand that I wouldn't be quizzed on it later.  Helping me to see that, this nurse in the ER, he doesn't see how much pain I live with each day.  This is not a test.  He just needs to understand how uncomfortable I am, how much I am enduring, suffering.  That extra .5 that you are hanging onto for your own mental stability can be abandoned now, and forever.  It is ok if you say your pain is at 10.  They're not gonna punch you in your migraine-riddled head and then ask you again, forcing you to say 11.  It's safe to say 10 when that is the truth of the feeling.  It was last night.  Here is the story.

Yesterday, I hadn't had enough sleep when the day started.  We needed to go pick up our shopping and run to the PetSmart for the cat food, all of which I ordered online and we just needed to pick up.  And I needed to be home by about 11:15 in order to have some lunch before the bus picked me up at 12:05 for my ride to my support group meeting at 1pm.  So the day started out not great.  Hadn't been able to fall asleep until after 1am.  Just not enough rest, that's all.  

Lay down on the couch while waiting for the bus, resting, feeling the migraine birth, taking the relievers I have here to take, doing all the things I need to do to help stunt its growth.  So, in addition to this, the diarrhea began, just before I was due to leave the house.  Increasing my dehydration.

At the support group, which I don't regret attending, by the way, it did get worse.  I did laugh, and I was valued and loved, and gave love and value, but, it did get worse.  Just by way of stupid flourescent light.  But it still was what I'd call reasonable.  I was able to take my sunglasses and hat off to take a quick group picture.  So, the stars being aligned the way they were, here is the straw that broke this camel-back.  The very polite young man who drove my bus (mini-van) home.  He was nothing but kindness to me, and I was already very uncomfortable re headache.  But, his odor was migraine food.  It grew exponentially so that 30 minutes later when we were home, I could barely see.  (One thing I could have done in hindsight to prevent some of what I was exposed to was to ask if he could just strap my chair down in front with him, and I would ride in the back, so I wasn't sitting right next to him.  But, it might have made little difference.)  I got out my trusty peppermint essential oil and rubbed it all over my face, including just barely on the skin up my nostrils.  This guy's scent was literally making me ill, and I had to do whatever was at my disposal to survive.   I didn't want to vomit, and there was real danger of that.  I held the small bottle of oil up to my nose during the whole drive home, with a blindfold on my eyes.  

Arriving at home, I was so disoriented, that I fumbled around for my keys, unknowingly pressing the panic button on my home security system.  I got a call within seconds.  I wasn't remotely able to answer a phone call, nor did I look to see who it was, and let it go.  I got inside and Tim greeted me, saying that I'd just set the alarm off, and he just got it turned off.  His phone was ringing.  He missed the first time, and picked up the second ring.  It was the alarm company, ready to send the police to me for my panic alert.  So, we were just on this side of keeping the police out of the uncomfortable day.  lol

I went straight to my bedroom.  I managed to get out of my clothes and laid on my bed with as much comfort as I could manage.  A little later, I knew I had to take some action, this was getting serious.  So, I went to my bathtub, and I let alternating hot and cold shower streams hit my head.  I think I did that for about 20 minutes.  I needed help getting out of the tub, so T came and helped.  We got me dry and to my bed.  I had him give me 10 mg diazepam.  That thankfully knocked me out for about an hour and a half.  When I woke up, the headache was worse.  I discussed with T that the only thing I had to do was to take a muscle relaxer but, that would create a situation where he would have to help me get out of bed and to the bathroom.  I wouldn't be able to do anything with my voluntary muscles.  And the diarrhea would likely strike again.  But, because there wasn't anything else to try, we went forward with that, and he stayed in my room for a bit, because I was scared to be by myself.  Just after he left, I was almost asleep again when the vomiting began.  After I vomited, I got on my support chat, asking my friends to send up a prayer for me.  One of them, thankfully, wisely told me that if vomiting has begun, its time to go to the ER.  I thought a shot of Tordol might help.  I'd only had this medicine one time before when I let a migraine go for 8 days.  At that time, it didn't help a bit.  But, I thought for this one, since it was still the first day, that it might.  So, I called T and told him I needed to go to the ER for a shot.  He got up from bed, and got me some clothes, helped me dress, got my list of meds from my health file, and took me back to the very hospital that my support group met at earlier in the day.  

I didn't stop vomiting during the 20 minute drive.  Not once.  I was dry heaving at the parking lot.  

He filled out my forms. 

UPDATE:  At this point, the piece ends and I did not write again until last week, Apr 29, 2018.  I won't go into all that happened during the rest of that particular evening, nor will I take space here to delve into the last 7 months.  Suffice to say that it was a hard winter for me, but I have been making progress and quality of life feels high again.   

Have happy days.