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