Life is such an amazing adventure! One day you're cruising along with certain expectations, a planned route, and plenty of gas in the tank. The next, you're not sure where you are on the map and your compass fell beind that comfy seat you were in.
Hi, its me. Feeling more words than should be typed into a post, so I'll place them here.
2020 is here. We expect clarity each New Year and plan to do better. This next year, it is VITAL that you chose that which is real, that which holds true value, that which brings excitement to your soul, that which makes you - YOU. Find that and DO more to include THAT in your life.
Why? Your days are numbered, as are those of each soul you love. You will close your eyes one day. You will be faced with issues you wish for no one. You will fight. You will cheer. You will cry. You will understand. You will live. You ARE living. You are surviving.
What’s next? Not judging yourself based on a scale, or measuring your worth based on the rants of someone who missed a meal, or knocking down the opinions of your dear friend because you’ve just discovered thoughts are not always aligned. It is not this.
Choose to BE MORE! Choose to wake up a few mins early to stretch because your body can, offer to hold the door for a stranger and make eye contact, choose more water because it’s good for you, and chose to savor time and make valuable memories. RELEASE the memories you hold too tightly, and appreciate the time in which they were created, the people you knew, the person you were and how they made you who YOU ARE! These are PART of you, not the sum of who you are. Choose to BE YOU! Trust the good that DOES simmer in your soul, does want to be part of your every day. Know the warmth in your heart is meant to be shared, and will be returned. Believe that YOU ARE LOVED for the person you are, and you ARE PERFECTLY MADE!
STOP chasing silence from those who are unable to be present for you right now. This has been a loud message for me in recent months. STOP seeking approval from those who may not or can not communicate to you, what you WANT to hear. This does not impact your worth, it only means someone else is meant to walk with you in this time. Its ok to release your expectations of this silent friend/family/loved one. They will go on too! They already have.
Chasing silence and sitting in the quiet, are different. Take pause, be still, be quiet, embrace the calm when you can. Listen. Receive.
2020 is here and I'm still looking for my flying car and hoping Rosie will show up to get us ready one morning. Until that future arrives, my goal is to LIVE right here. To LOVE right now. To BE who I am and to surround myself with those who want to KNOW ME, not a version that fits into a story. Surround yourself with that which is REAL. Surround yourself with those who are TRUE. Be true to yourself first so that you can BOLDLY love others this year. That time is now. Our time is short. Its vital that we use it well. BE the love you hope to see in this world. Now.
....“just write it down” is all I can hear and as I get closer
to the keyboard and progress, something slows me.I’ve started by just opening a Word file,
which in my mind is the same now as finding a napkin to write on…only easier for
me.
Today is Thursday, and today is good.It’s a powerful day. There are SO MANY
awesome things moving around us that it feels overwhelming.We’ve had a year of transition, but more intensely
the past 2 months have been heavy, and are beginning to feel less so.
Driving home from dropping our daughter off at school today, my
heart was doing a few flips and my lungs could feel cool air.Deep breaths are being consumed this morning,
because fall is here…for today.
Last year this time, we were managing a few things, just
like everyone else.
Pneumonia was ever present, and led to 5 rounds of antibiotics and the depression that
comes with pneumonia (its real y'all!). Visits with 2 different ENTs resulted in the same opinion: Let's carve out my sinus cavity so ‘maybe’ added airflow helps. It ‘might’ minimize the impact of the allergies. We had exhausted my allergist, confused my 2 neurologists, and frustrated
my pulmonologist. I considered asking for help from the pediatrician but
left them to deal with our girl's allergies and ears. Lee was stay-home-dad last
year, my job was just terminated, and we were interested to see how we would traverse
the holiday season.
Today, all is perfectly fine and with reflection I will boldly say EACH step in that
season of life has been a BLESSING!Sometimes changes we can’t
make for ourselves, are made for us. Hurdles we encounter become beautiful lessons. Relationships, career, health, etc.Embrace each shift. Go with the flow. Tuck and
roll.
My daily devotional is a year-round devotional which is timeless. You can read the same book each year. Anyone who has this devotional, is
reading the same entry each day. I began using this, last year, around this
time. Today I am reading my scribbled notes from last year. Powerful to see those notes, and
to reflect on the words in the text which grabbed my attention then vs now.
Last year, it was made clear that I needed to be still and
sit with this ‘season’ of life. In the next months my need for control over what was ahead, was tested. My faith was being stretched. It was not possible to fully
understood at the time, and still don’t, the magnitude of what was taking
place. We were walking into a new family model, new health status, new financial
boundaries, new energy, renewed faith.
This year, my health is insanely good and I’m blessed to be
able to share with others, what was shared with me. I have recently heard the molds
are bad again this year…funny…I’ve not noticed.
Work found Lee at the just right time, and before
that time, our family was just that, a family. Precious moments together, building
relationship, foundation and strength together. We continue to be stretched and
grown daily, and respectfully embrace each step.
We’ve said goodbye to our family pet, we are parting ways
with my beloved Ford, we are shifting to big kid environments and learning how
to improve our communication, we are enjoying now and embracing what we have,
we are remembering to be present…in the present.
I’ve just wrapped up a phone call with an amazing woman in
my life, and through this call I am reminded that each person and experience in
our lives is rich in value. Our relationship formed almost 20 years ago, and to
see where we are now is amazing. So much has been experienced! To reflect on where
we’ve been is precious. To praise together is filling. Learn from each other is
rich. To cheer each other on until our next call months from now, is
priceless.
You have right now. Last year was last year. Reflect on the time. What did you
learn? Who helped changed you? Who have you shared love with? Has your definition
of love changed? Have you learned better how to also love yourself? Did you
remember to make eye contact with yourself this morning? Did you look at your reflection and smile? Do it now. Find a spoon if you have too, and check out your smile.
You’re doing a great job. Today is Thursday, and it is a powerful day.
While June is Myasthenia Gravis (MG) Awareness month, I try to share on social media, a fact about MG each day, to social media (FB). In doing this, the thought hit me that there are facts about me, that I've learned through my MG journey. Here are my top 10...or those I can think of right now.
Fact 1: I do not have to rush. I can. I will, but on my terms.
Fact 2: Your emergency, is your emergency. Mine looks different.
Fact 3: Worry means faith is weak.
Fact 4: There are amazing people around ALL the time. Make eye contact!
Fact 5: Not everyone around you is amazing. This hurts sometimes. Regardless, your life has been enriched in some way, by this soul.
Fact 6: Not everyone around you deserves your time or energy.
Fact 7: Sometimes we must say good-bye to those not yet passed away.
Fact 8: My home is LIVED in. Crayon+chalk+dents on the walls = blessings.
Fact 9: Life IS unexpected. Sef Scott from Plano, TX is one of my new heroes.
Fact 10: It is ok to sit still. If you wont choose to rest, your body may choose for you. Relax. Sit. Listen. Be quiet.
I'm one of the fortunate ones. My body was/has been/is strong and can fight the good fight. My mind and soul, are even stronger. Opportunity for refinement is a gift. Embrace!
My name is Rachel. I believe BIG things happen, and that they happen at the appropriate time, even if the timing feels like poop. I've been trying to write this blog entry for almost a year, and each time, I've let that little voice in my head say "no one really cares, stop." So I did. I stopped writing.
Recently, I was divinely reminded that my story is meant to be shared. I completely believe our life/journey/experiences are not meant to be held in silence, the good or bad. We are intended to experience and share, so that we can grow, as well as support others. This means you, too.
I am supposed to share this part of my story with you.
In 2008, I moved to Austin, TX on a whim, with plans to return to Denver, CO in 2 years. Those were MY big plans. Bigger plans were prepared before me.
In late 2008, I woke up one morning and was unable to spit out my toothpaste. This progressed over the day and became a change in my speech pattern. In the coming months my neck muscles would weaken (wet towel on head sensation), my eye muscles would weaken and vision would be crossed for weeks, my breathing became labored due to weak diaphragm muscles, my arms would not lift, my legs were like jello, and it was becoming hard to chew/swallow my food. I like to eat, so this was a real downer.
Needless to say, there were a few hospital visits and stays. I'll share that we have yet to learn of a frequent shopper plan or rewards program, in a hospital system.
As medical help was sought and specialist were enlisted, we tried to rule out Bells Palsy, stroke, pinched nerves, Myasthenia Gravis, Lou Gehrig Disease (ALS), Multiple Sclerosis, and so on. Ultimately, my body was in 'attack-Rachel' mode and several auto-immune conditions loaded the bus. In 2009, I was diagnosed with a rare form of Myasthenia Gravis (MG), Multiple Sclerosis (MS), and Hashimoto's thyroiditis. Did someone say "Bingo?"
MS and Hashimoto's are fairly known. Many people understand your conversation, if you mention these two disease names. MG on the other hand, is my primary disease. This disease in itself is rare (20/100,000) and the sub-type I live with is present for less than 10% of the MG population.
Myasthenia gravis (MG) is an autoimmune neuromuscular disorder that affects voluntary muscles. Common symptoms can include a drooping eyelid, blurred or double vision, slurred speech, difficulty chewing and swallowing, weakness in the arms and legs, chronic muscle fatigue and difficulty breathing. The weakness tends to increase with continued activity and can be improved with periods of rest. Not everyone will display all symptoms, and symptoms can fluctuate.
In early 2009, we began treating MG with regular plasmapheresis (3x/week) plus one of the several immune suppressant drugs we tried over the years. MS was treated with daily Copaxone injections, and thyroid with Synthroid. This continued until late 2011.
The very 1st plasmapheresis treatment, 2009.
Just out of surgery to install equipment into chest wall.
What a Permacath looks like under Xray.
For those who know what they're looking at, this was cath #5, not #1 pictured above.
March 2010. In crisis. Double vision, tape on glasses to blur lazy line of sight.
Weak/square smile.
June 2010. Friend's wedding, best smile I could muscle.
See permacath? My right upper-chest/shoulder.
During this 3-year time, my wonderful boyfriend and I were married. He never left my side! Team Higgins was established. My weight had dropped 40 pounds. We monitored MS with annual MRIs. We monitored thyroid and bone density degradation (due to steroids) with annual blood work and bone scans. We tried every therapy/treatment we could, to treat the MG. We visited specialist in Houston and Dallas, TX. Then, we found Rituxan.
2011 - We had little BBQ and a wedding broke out.
Halter dress totally hides the permacath!
Rituxan as an infusion therapy, had been on the market for other diseases, and was now being considered in the fight against MG and MS. It worked. THIS became the miracle we ALL prayed for, and the permacath would finally be removed from my chest wall, in 2012. We went from sitting in the plasmapheresis chair 3-times in a week, to sitting in an infusion chair once every 6-9 months, and we no longer had to perform daily injections. Amen!
Very 1st Rituxan infusion. Notice my steroid-induced moon face.
Just as we came to understand what to expect with the process of cleaning my blood, we came to understand what to expect with infusions of Rituxan. We could anticipate when my body would begin to show symptoms, what blood counts to look for, and when we needed to schedule the 'next' infusion. From 2011 to 2016, this was routine, as were the annual MRIs.
As shared, I believe BIG things happen at their right time. During our years with MG and MS, we've built relationships with families, friends, businesses, non-profits, and professionals which we never would have had the pleasure of knowing, had it not been for THIS journey. These relationships have shaped my life. These people are part of me. We are family!
Two of my deepest passions at this stage of life is patient advocacy and support groups. Without our (home base) support group in Austin, TX, we would be in a MUCH different place today. Surrounding yourself with those who have or do been through what you are enduring, is priceless. Learning from those who have been there, understanding that you are not alone, sharing your story is INVALUABLE. Were it not for support groups, we may not have learned how to conserve energy, which doctors were helpful, best ways to deal with insurance, how to communicate with family members, what to expect from work, etc. This experience gave us motivation to become more involved with awareness efforts and to help launch support groups.
2009 - Smiling at the MDA Lockup - Austin
2010 - MDA Telethon - Austin
2012 - MG Walk - Dallas
Patient advocacy is something you never want to know about, but everyone should. YOU have to be your own best advocate, and that will differ from person to person, family to family. YOU need to educate yourself on your disease/condition/illness. YOU need to be aware of what can and can not be controlled or impacted by your actions. YOU need to know what resources are available to you and YOU need support! Not only you, but those who support you too. Our caregivers are angels and your journey is THEIR journey too!
It was in this area of my life that I feel an angel sent me knowledge of a non-pharmaceutical, plant-based product that may/may not have a significant impact on my health. Because I know my case well and I am my own best lab rat, after research and interviews of an ALS family who utilize the Nrf2 activator, we decided to add this to my daily routine. That was November 2015.
In February and November 2016, my body needed the expected Rituxan infusions. November 2016 was my last infusion. As of this blog, it has been more than 18-months since my last infusion. May 2018, MRIs are stable.
Whats more exciting than this? That MY LIFE is so much bigger than just setting a new/slower pace and living in a way which avoids triggers. Heck, we don't avoid triggers. We dive into deep end of the pool!
In the past three years, we adopted our beautiful daughter upon her birth, in 2015. Our family has experienced "reductions in workforce" three times, we've survived a year of pneumonia/doctors/antibiotics, we have paid each bill, we haven't missed a meal, we've learned what it means to have a 2-year old, we are potty training, we've lost sleep, lost loved one, welcomed new friends, and cheered for so many. We LIVE our lives! We give thanks.
My Team!
Whats the big deal? For those who live with autoimmune conditions/disease, you understand that any stress, positive or negative, can create a flare/symptoms. I stay out of the heat when possible, we minimize a few things in our diet, and my exercise equates to chasing a highly energetic child around. Aside from these things and adding a daily pill to the routine, nothing has changed. This is so scary to type out-loud because it is not very common. STABLE. Two big diseases. Stable without medication. It DOES happen, and it CAN. I feel being my own best advocate and having the spirit/willingness/energy to try something new, could have been the NEXT change agent in my journey. All could shift tomorrow, and so what if it does. In the mean time, I cheer for today!
BIG things happen at the right time. This is my 10th year in Texas, my family is amazing, my friends are close, my health is THE STRONGEST it has been in 10 years. I'm not sure WHY our journey has been what it is, but I know I'm supposed to share this part with you.
Hey...how ya been? We've had a little life change since my last post.
We are parents now. Wow. wow! I don't care how much you read, who you talk to, or what videos you watch, there is little to do before hand that can really prepare you for the amazing journey of having a child. Parents of multiples, dang! It is a job like no other, it is a responsibility like no other, and it brings a joy like no other. I'm still in shock sometimes that we are responsible for this beautiful creature. Wow. wow!
Life is still busy, and the leaves are preparing to change again. Health is really good. There is SO much more to share with that, and we'll save that for another time. We are blessed! In this season of my life, I am striving to reconnect and appreciate more; appreciate all that we are given, all that we have experienced, and the excitement of all that we have ahead.
I'm scurrying around this morning as I always do. Alarm goes off with the start of the news on local radio. Listen to 3 minutes of headlines, then the traffic, then the weather. Now get up. Shower, dress, makeup, iron what needs ironing while 2 cups of coffee brew. Prep cereal 'to go' cups for our ride to work. Read devotional and feel joy for that moment. What's for lunch? Check emails, start list for groceries, check menu for week. Make the bed. Find shoes and necklace and finish coffee. Ready?
Tired with me? I know, I know...you have the same schedule with a few variations.
While making the bed and wondering where the cat was, I looked out the window for a moment at the tree next to the building, which is barely dressed in its own fall colors. Next I feel the words, "give thanks for the leaves."
This past Thursday, on Thanksgiving morning, I snapped a fast picture of the same tree and the same leaves, because it was as if they changed color over night! They were a beautiful shade of yellow that reminded me of the Aspen trees I adore. They were here and then a front blew in and they now cover much of the ground. The tree of course remains, but it appears a bit more chilly without its clothes on!
How beautiful the leaves were in their moment. Really it was a moment, and I'm sooo very glad that I was able to see and appreciate the leaves in their majesty for that moment. In the sprint and summer months, they look much like the trees and leaves around them...or so I believe. However, in the fall/winter months after weekend full of rain, the leaves truly put on a show. It was fast, and only here for a minute, but by golly, I was able to appreciate the transition those leaves demonstrated.
Did I put deodorant on? Dang it! My coffee is now gone. Double dang it! My moments are fast and fleeting, as are yours. Do I want to live that way? Not necessarily. I want to spend more time looking at the leaves and learning to appreciate their Spring/Summer too. In the mean time, I'll savor the moments there are, and give thanks for the leaves I see.
Each morning while making my coffee at home, I take a minute to 'toast' God while taking my first sip. "Thanks for another day!" and I raise my mug. Rather than just dive right into my routine, I stood there for a moment to appreciate the flavor, the warmth, the satisfaction of the moment, the creative mug, the brilliant coffee maker, the tasty creamer, the ability to consume the coffee without choking, the strength to stand while building this wonderful cup of coffee, and then my mind shifted.
"Thank you for the hands that stocked the coffee and creamer on the shelves at the grocery, the drivers who drove the product, those who came into work that day and packaged the coffee for ME, the hands that grew the coffee bean so well, the wonderful weather needed to grow the plant, the soil that fed the growth, those hearts who harvested the plants, the hands who planted (or drove the machine which planted) the seeds, and the plant before that which generated the seeds from which my wonderful cup of coffee comes from. Thank you for all the hands, the hearts, the families who contribute, and the beauty of life. Bless this coffee to the nourishment of my body, and bless my body to your service. Amen."
Wrapping up my
Celebration Series, and appreciate your reading along. Final verse, verse 6: Surely
goodness and mercy shall follow meAll the days of my life; And I will dwell in the house of the LordForever
Surely – The word is one of
those words that sounds funny in my head.
And what does it even mean? We aren't calling on “Shirley”, or “shoring” up the failing hillside, and I’m not acting “surly” and growling. Most often I say this word and roll my eyes at the
same time, indicating my sarcasm and doubt. None of this works here.
Surely equates to
speaking with confidence “He spoke surely and without a doubt” …spoken with
confidence. This one, I’ll hold on to.
Goodness and Mercy shall follow me…like caped crusader. Really. Imagine that. Replace Batman and Robin with two heroes
named Goodness and Mercy. They are
always around!
All the days of my life – Each day I’m on the earth. Each. Day. “The evening and the
morning were the first day.” This is a statement
of fact. Your life is measured by days. How many do we experience? All of them,
whether you know it, or not.
And I will dwell in the house of the Lord forever. Sounds like the 40-year old who never moved
out of mom and dad’s house, right? How
about the same person who fell on hard times and moved back into the parents’
home? Dwell is to live as a resident, or remain for a time. You may dwell on a thought about your
dwelling. Ok, so we aren’t dwelling on,
but dwelling in! Where is the house of the Lord? Go back to the child that
returns home. Why? What motivates the child to return home? Safe. Doesn’t cost
as much. Family is near. Familiar. Supportive. Love.
Most definitely, Goodness
and Mercy will follow me around each day I’m alive on this earth, even while I’m
still living at home, with God. ...thanks...this was fun. ;)
You anoint my head with oil – I’ve been a little hung up on this part of the verse, and was
waiting for the words to grab me. My first thoughts were hot oil on my hair. I will actually use this now and again, if my hair is really brittle. Its ‘supposed’ to help…yes, I buy the
marketing. That didn't feel right,
despite the fact that I’m sure the Big Guy would love for me to take care of my
brittle hair and split ends.
After reading a little
more, I realized there were references to various types of oils, as well as
recipes. A few examples: oil of joy for mourning, oil of gladness; and
anointing oil. I really stopped investigating after reading about the anointing
oil, as it was intended to mark those who were to be set apart, such as
royalty. This maaaay have been before the whole ‘knighting’ protocol came around, back when you would tap the shoulders of the chosen one...and I’m pretty sure this supersedes the ‘swearing
someone in’ bit, where the newly chosen places their hand on a Bible… just
sayin.
A host often marked
their guest with oil, and swore to protect them.…in the presence of an enemy.
My cup runs over – I remember always worrying about this line. If you make a mess, you gotta clean it up!
However, a dinner guest, receiving this much attention, is not pouring their
own glass. The host is making the mess,
the host is pouring from a bottomless container, the host wants you to stay and
keep on keeping on into the wee hours. You are safe, you are well fed, your
belly is full. As your cup runneth over, take a minute to appreciate why it
runs over. Science. Consumption. Poor
eye sight. Appreciation. Excitement. Parental love. …Mom and Dad will never let you stand inside
their house hungry or thirsty.
Now, stop thinking about
sweet tea or wine or water running over the sides of that lovely cup. YOU are
the vessel.You are the vessel that is
being filled with goodness. You feel
safe, you are not hungry, you've found an oasis in a really dark valley, and
you feel relief. You feel gratitude towards something bigger than
yourself.You are the cup and the
goodness runneth over.
Thou/You prepare a table – What comes to mind as you’re preparing a table? First, there must be guest involved,
otherwise, I’m using the TV tray…not a table.
Fine, we have guest. How
many? Do I have enough plates (not
matching, just plates)? Are all the
forks and knives clean? Can I use plastic? What about place mats, oh, should I
use a table cloth? Cloth…cloth
napkins? That means I need to iron
those. Where are they? How many do I have? Do they match the table cloth? Can we go out to eat?
It doesn’t matter. None
of it matters. YOU prepare a table,
which means He knows you’re going to be stopping by.
In the presence of my enemies – In the presence of my enemies, you did what? First of all, if we’re
IN the presence of enemies…mine or yours…my gut reaction is that we must
defend. Prepare to fight! Instead, we’re going to sit down and this
lovely table that was prepared with matching plates? ..but..what about
defending?
Stop. Now flip it around. You’re on the enemy side.
How do you feel if you walk up on this awesome table setting, in the middle off
a dark, dank forest in the valley? You’ve
been fighting for days to capture this weak little soul who can’t fight their
way out of a wet paper bag. You’re tired
too and hungry. Haven’t eaten for
days. Then *BAM* …what? There’s a table all
set up for a lush meal, food may have already been placed, and there sits the
soul you've been chasing, relaxed and eating meal. In fact…is that soul wearing
stretchy pants and fuzzy slippers?
Whaaat?
Ok. Flip back. YOU are that wonderful soul sitting at a
table that has been so awesomely prepared, and even though the enemy is
drooling over your meal, you know you are safe and can relax and eat a
meal. You get to rebuild your strength.
You are protected. You ARE preparing to
defend and fight a little more.
How awesome to know a
safe place to restore my energy and rest my old bones, awaits me, smack dab in
the middle of dark valley.
The Celebration Series continues... part 3 of ... Celebrating 5 years living with Myasthenia Gravis, I want to share my 23rd Psalm.
Post #2 left us in the middle of verse 4. Reminder - I am intentionally breaking up the verses we so often read in sing-song fashion, and removing the punctuation, because I want to feel how each part of a verse stands on its own...or paired differently with the next verse.
I will fear no evil - this feels a lot like verse 1, in that my read of this shouts
the fact as a declaration. "I am not afraid!"...even though I
am really tired and dealing with stuff I really just don't want to deal with.
In fact, I say this to myself through the day when I'm just having that slight
moment of panic that may or may not be justified. Its the same one you
get the pit in your stomach when you kiss your love good bye for the day
because you have the fear it could be the last; when you get that unexpected
call from the family member you haven't spoken to in a while; when you
get an odd piece of mail from the bank that looks a little too real; when you
forget to lock the car which has your personal belongings, and the 'remote
clicker' just wont reach the distance. ...but you press that button anyway...
That slight pit in the stomach which feels silly, but is real none the
less. "I will fear no evil" and I'm watched over, so whatever
happens, I can deal with it.
For YOU are with me - Ok. Stop. This
just hit me. It is here, in verse 4 that the Psalm begins to sing/speak TO
the subject of celebration. Verses 1-3 are those that sing about the
calm...the warm up. Now the music picks up pace and we're singing LOUD.
I'm picturing me singing the song “Drops of Jupiter" by the band Train
(love!), where there is an awesome momentum building switch in the music (yeah,
I don't know musical vocab), after the chorus has been sung through a few
times. I really enjoy belting those lines out and the waiving my fist in
the air at the just the right time. We're rocking out, because YOU are
with Me!
Your rod and your staff comfort
me -Truly, I did a
little study work on this part of the verse, because it called to me.
A shepherd carries a rod and staff
while tending to the flock. The staff is the taller, stronger multipurpose
stick we imagine when we traditionally talk of those who herd sheep. One
source said this is made from a sapling tree and is formed specifically for the
shepherd. The staff is used to support
the shepherd, while he walks or as he stands observant. The hook formed
on the end of the staff, is necessary to help retrieve a sheep who may have
found its way into a tight spot and needs assistance wriggling out. The
hook is also used to gently lay across the side of the sheep from a distance,
to help nudge the lil rascal back to the path, rather than the sheep finding
the thicket. Course corrections.
Now, the rod on the other hand, is
a smaller stick that may be hip high, 2-4 feet. It was sometimes worn on the hip and used as
a tool to defend or also as walking support. I imagine a club type tool, maybe something
out of Harry Potter, in that it’s an older piece of stick that is knotted with
a dried up root ball on the end. In any case, the rod would be hurled at predators
to defend, or sometimes thrown towards the thicket, the sheep were walking
towards. Why? To startle them back to the herd. Stranger
Danger!
...I will fear no evil as we walk
this particular path of righteousness which happens to lead through this scary valley of
darkness, because I know YOU are with me, protecting me through course correction
and by clubbing the enemy with that awesome tree root!
The Celebration Series continues... part 2 of a few! ...Celebrating 5 years living with Myasthenia Gravis, I want to share my 23rd Psalm.
Last Post, I left you in the middle of verse 3. Note - I am intentionally breaking up the verses we so often read in sing-song fashion, and removing the punctuation, because I want to feel how each part of a verse stands on its own...or paired differently with the next verse.
He leads me in the
paths of righteousness – Paths. There are several. Plural means more than one! Did you notice that? I NEVER did, and by golly this one smacked me
good. How often do you find yourself
speaking down to you, and feeling horrible about the decisions you’ve made or
the path you’re on? Well I can’t count
the many times where I’ve had my own little pity party because I’m not where
I’m supposed to be. HOLD THE PHONE! What
if you ARE where you’re supposed to be?
HE LEADS ME IN THE PATHS…what if you ARE on a path that He chose, and
yet YOU just won’t give yourself permission to see that? Since you’re here, why
can’t your journey be a righteous one?
For His name’s sake
– Growing up, if you were named after a family member, you were his/her’s name
sake. Because you shared a name, you
were destined to grow up with similar persona, as your name sake. Make sense?
For me, it’s a badge of honor. I share the same middle name as my mom
and my grandma. It gives me a line to my past, and I know I’m similar to both. My first name is also present on my dad’s
side of the family, but I never knew her. I do wonder if we behave in any
similar manner. Jesus is God’s son on
earth, as are we His children. We are His name sake!
He leads me in the path of righteousness, for His children, His name sake(s).
He leads me in the paths of righteousness so that I may see what it really
means to inherit His name. It is an
honor to walk with Him and to know the line to my past and to see where we ARE
so similar.
Yea though I walk
through the valley of the shadow of death – “Even when I have to endure what
I perceive to be one of the toughest parts of my life…” How many times have you thought a situation
bad enough that you just want to run and hide, give up the ghost, or maybe
fight and cry like you never have before? The death is just TOO much to imagine
or believe! The financial hardship came out of nowhere and you see NO way out
of the mess you’re in! The Doctor just shook your world and you don’t feel the
energy to endure the treatment or bills!
Many times I've asked “Why me? …is this a punishment because I made bad
decisions or hurt someone?” Oh yeah, I have to remind myself regularly that the
simple answer is NO. My God doesn't bring the hurt, but by golly he’s right
there with me, when I need to endure.
This was one of my bigger ‘AH HA’ moments when reading the
23rd Psalm this go ‘round…watch this…
“He leads me in the paths of righteousness…even though
these paths will cross through the valley of the shadow of death….” ...Yeah…even those dark times in our lives….they JUST might be
part of the righteous path…heck, my heart tells me those dark times are camping
out on each and every path of righteousness. Even still, He will lead you by the green pastures and still waters as
soon as He can.
This month, I'm celebrating our 5-year anniversary with Myasthenia Gravis! Can you believe it? This past week, I read back through some of the early post on this blog, and even found some of the original emails which preceded the creation of this blog. At that time we named the emails 'The Rachel Report'. If you're going to go through something scary, by golly, have a little fun with it. Well, I was really hiding my fear behind the goofiness. There was fear. Lots.
This applies to so many life situations, but it's scary when you feel like you've actually met the cause of your impending death. Your perception of life wakes up in a whole new way. Its real. The feelings don't really come with words, so lets not pretend. Now, processing those feelings...I choose to be silly or to write.
This has been on my heart for a really long time, so I'm going to put my fear of your disapproval aside and just leap. In honor of our 5-year journey, and because this is a HUGE part of how we've made it through, I want to share MY 23rd Psalm, with YOU. Believer or not, you know this passage. I challenge you to read with me, and pick it apart.
There are MANY versions of the Bible...a LOT. I've read several in studying this chapter, as each will resonate with me in a different way. Kind of like studying a fantasy football pick. You read commentary and stats from a gazillon different sources before you claim that player for your roster.
For reference purposes, I'm going to use the New King James Version here...but check out others if you like. A few of the versions I'm using are: the Living Bible, the Message, the New International Version, etc.
New King James Version
(KJV)
TheLordismy shepherd; I shall not want. 2 He
makes me to lie down in green pastures; He leads me beside the still
waters. 3 He restores my soul;He leads me in the
paths of righteousness For His name’s sake. 4 Yea,
though I walk through the valley of the shadow of death, I will fear no
evil; For Youarewith me; Your rod and Your staff, they comfort
me. 5 You prepare a table before me in the presence of
my enemies; You anoint my head with oil;My cup runs over.6 Surely
goodness and mercy shall follow me All the days of my life; And I will
dwell[a]in the house of theLord Forever
Part 1:
The LORD is MY
shepherd – Read this as a declaration!
He’s the captain of the team, and He chose you to play for His side. Oh,
and you were NOT chosen last. Yeah,
remember that feeling in gym class? What
a rush if both captains tried to pick you first, but most of us weren't that
person. Sometimes you feel like the
person who is leftover and simply must be absorbed onto one team or the
other. Not here! You were chosen to be part of HIS team!
I shall NOT want
– Claim this, as an independent thought. You know you’re on the team. You know
you’re captain is pretty awesome. Your laces are tied, the crowd is cheering
for you, not against you, and you had a good lunch! What more do you need right
now?
He makes me lie down
in green pastures – I remember the sensation of playing in the pasture as a
kid and having so much fun running through the space before hay bailing,
because we created tunnels. We were
plenty tall to see over the grass, but we would zip up our hoodies and create
tunnels/paths through the tall grass, and pretend to become lost from each
other. After hay bailing, the grass
smelled so sweet and the large mazes of our hidden trails were no more. Now, we could simply lay out on the pasture
and see the sky forever. Listen to the
birds. Hear the neighbor cows. Feel the
neighbor horses run a firm gallop, while chasing nothing. It was peace.
He leads me beside
still waters – As a child, the sill water screamed at me to ‘throw a rock’
and see how many skips my skills would create.
Now as an adult, I find myself watching the still water with new eyes. It’s
beautiful to see the bugs zipping to and from the water surface, either teasing
the fish or claiming their algae; to see the reflection on the glass, of the
birds flying overhead; to see the perfect mirror of the mountain on the other
side that no photo or painting will ever really capture. In either scenario, the calm water brings joy.
He restores my soul.
Capturing the emotions, sensations, and feelings I personally have, when remembering the green pastures and still waters, brings me to a place of ‘still’. For me, being still equates to sitting in
agreement that the rest can wait and appreciating each sound you hear such as
the rhythm of the many cars on the nearby highway; the garage door neighbors as
they depart; the rumble of the mufflers from cars that shouldn’t have them at
this hour; the flutter of the tree leaves as the birds hop through the trees
collecting food or structure for their nest; the chirp of the same birds and
those in other trees directing traffic or saying hello; the oh-so-kind beep of
the coffee pot letting you know the ‘go juice’ is ready. To be, still means
being present and appreciative.
Congratulations, we've made it through the first 30 days of the new year, and have almost completed the 1st month of the new year. That's something to cheer about! You're rolling your eyes...I can see you through the web cam on your computer... (that IS a lie).
Pick today to be the day you choose to be excited about something. It may be that you choose to find cheer in seeing the same cars on your way to work today ("excellent, they lived to see another day"), or cheer to try the new non-dairy creamer flavor at work (rebel!), or cheer because you have something coming up this weekend to look forward to (Go Broncos!). Pick something to be excited about!
Yes, you're going to see the same cars, and yes the coffee may taste the same today as it has every day, and yes, you'll come home to see the same mess that you left behind. So what? You get to CHOOSE to be happy about something. If you're reading this, then be happy that you've reached another day, and that you have air in your lungs.
Today, Lee and I wrap up a brief fast we do each new year. From afar, we celebrate the start of a new year with those at Free Chapel Church, in GA, by taking part in a Daniel's Fast. The purpose of the fast will differ for many, but we choose to honor our faith by respecting the power of prayer and sacrifice.
As we conclude our fast, I choose to be excited for the time I spent fasting and the amazing blessings I've immediately watched come from that, both anticipated and unexpected. Yesterday, I not only had a successful Rituxan booster infusion, but I also had multiple communications from within the MG community about growth. Lots of great stuff ramping up, and I am BLESSED to be party to that revolution!
Right now, I'm excited to reintroduce myself to a pot of caffeinated coffee.
I challenge you, that regardless of the routine you feel consumes you at home, at work, in the community, alter your perceptions. You may not be able to change the routine, but you CAN choose to be happy in it.
Rejoice - Punctuation - Reunion - Rest - Presence - Doing for Others - Music -Sport - Gifts from the heart - (Technically, I DID start this blog entry yesterday (24th)..and life just happens)
"On the 12th day of Christmas, my true love gave to me, 12 drummers drumming"
What do you suppose they were drumming about? Were they the marching band leading in the next big thing? This is my 12th day of Christmas, and the 12 days have been joyous. It has been a good exercise for me in slowing down to really feel whats going on around me. I am the gal that will tel you I'm really relaxed and going with the flow, but then walking that walk is another exercise all together. Today, for my 12th day of Christmas, I want to celebrate the excitement of new beginnings. I think this emotion follows everything we do with the holidays. We reunite with family and friends, we shop for a big party, we dress up, we gift exchange, we welcome tradition, we anticipate rest. We participate in so much during the holidays, and then we (sometimes quietly) look forward to the end...or the new beginning. So we celebrate a new year, and then off we go to the races...again.
Christmas for me, is a celebration of new beginnings. Sure, you can tell me Jesus wasn't really born on this day, and that a holiday like Christmas wasn't celebrated in December, or that many of our traditions are pagan in nature. I don't care. You don't like my gifts? Give them back. I choose to celebrate right now. I choose to celebrate the birth of Jesus. I choose to honor a tradition of Santa Clause. I choose to wake up and have coffee, and celebrate the sunshine on my face and the breathe in my lungs. I choose to be happy.
I look forward to every day I'm blessed with on this earth, and hope that I respect each one as a new beginning. The holidays are like the Superbowl of gratitude. Lumping Thanksgiving and Christmas together, sprinkled with New Years Day, and BAM...you've got closure to that calendar year and all the crazy that took place. We tell ourselves that we should use this time of year to reflect on all things past and learn from them and plan what we will do differently in the next calendar year. We read magazines and watch TV that tell us who to vote for, who to hate, what we should look like, or what we should eat, or where we should live and work, and we strive for this crap. Sorry... that's a whole 'nuther soapbox.
Regardless of where we find motivation, we typically use this time of year to reset and call a new year into play. We set new goals, we aim for improvement, we hope for better things and clarity along the way. Its gives us strength and excitement to start the new year. What will you do differently? How will you better serve your soul? How will you better support your neighbor? How will you better love your neighbor?
With the 12 days of Christmas, I celebrate new beginnings and the closure of the past year, and the hope and joy that come with the next year. I celebrate the eternal life I choose to believe in, and the hope this provides. I celebrate the excitement of new adventures, and the completion of others. Rejoice Punctuation, and Reunion with Rest, while sharing Presence in Doing for Others and giving Gifts from the heart, and listening to Music in anticipation of New Beginning"
Day 11…we are so close!
I’ve made it a goal to share my joy with you during the 12 days of
Christmas. My joys; those ideas which
bring joy into my life at any given moment!
I’m trying to think back to where my head was when this
first started. Lee and I were in conversation about the real reason for the season of Christmas, and how (my
words) it often feels so commercial and stressful that many wont enjoy the time
with family and friends. We (can) just lose sight of the celebration! For this
purpose, I really, really enjoy Thanksgiving.
Zero expectations except to eat some bird, nap, eat more, watch a little
football, run around the yard with the kids, and eat some more.
Why can’t Christmas be the same? Why can’t we share gifts that have NOTHING to
do with Mr. Retailer? What can you GIFT
your loved ones that does NOT require fighting the lines or signing up for that
30-day free trial with Amazon Prime for the excellent shipping deals?
Please don’t misunderstand me; I really enjoy giving and receiving
gifts and sharing time with one another around the tree. I truly love seeing the excitement in the
eyes of children when they tear apart gifts. It can all be super joyous!!! Many find their joy in providing those same
gifts. My question stands. What can you GIFT your loved ones with, that
does not require shopping? What emotion
can you share? How can you contribute to their day, week, year? How would
something like this be a gift to YOU?
Day 11, and Christmas Day is just around the corner of the
calendar. ...and then what? What will
you do to carry the season with you? What will you carry in your heart that
reminds you of the joy you felt this season? Did you feel joy this season?
As you’re marking tasks off the lists this week (Grocery shopping-check;
Laundry-check; Read Rachel’s ramblings-check; wrap 20 gifts in different
wrapping paper with the hand- made name tags and imported ribbons-check),
remember to give yourself a gift as well. Remember to allow yourself the gift
of joy. Give yourself permission to experience this emotion. Find joy in your day, in every
hour, in each home, at each stop light, with each shopper, with every passing
car. Smile. Waive. Hug. Gift the world
with YOUR joy!
On the 11th day of Christmas, my true love gave
to me…gifts from the heart.
On the 10th day of Christmas, the joy I share with you is the joy sports!
Today we will get to see my Denver Broncos play the Houston Texans. I could insert a little smack talk here, but we’ll stay on point. This may feel a little out of the ordinary with the 9 prior days of Christmas, but I think it blends nicely.
This morning I woke up conflicted about what my joy was today. When I finally slowed down to actually connect and feel what I’m excited about, I realized it didn’t have much to do with Christmas, except it does! My football team has flown all the way down to Texas to visit me and give me the gift of a football game in my backyard! We’ll, not MY backyard, but close enough that I’ll jump the neighbor’s fence and play in their backyard.
It IS like a Christmas gift to me, and this will be Lee’s first NFL game. Bonus!! What’s the big deal? I really enjoy becoming lost in sporting events. Not lost in the arena, ‘can’t find my mommy, please call for help’ kinda lost, but the lost that comes about when you enjoy something enough that you are able to tune the rest of the world out.
I’ve always been an athlete and life tried to slow that down, and I have some, but the passion remains. When conversations about politics, religion and rules start up, I walk away. You really have to earn my trust in order for me to even think about chatting with you on those topics. That said, you don’t have to know me at all and I’ll scream Go Broncos! Right at cha’.
Much like any cause, team, even that we may be excited for, we want to share the joy. For some, that may be the topics I stay away from, but for many, something like a football game may be the joy they need to escape the craze of a shopping lists on December 24th, or a family dinner that involves conversations about the ballot box, or maybe the gazillion voices in one’s on noggin’.
So there ya go… a little bit different, but MY joy none the less. The joy of sports with those like me!
From Houston this morning, GO BRONCOS!!
Rejoice - Punctuation - Reunion - Rest - Presence - Doing for Others - Music -
"Rejoice Punctuation, and Reunion with Rest, while sharing Presence in doing for Others and listening to Music"
"On the 9th day of Christmas, my true love gave to me, the gift of sharing life with youuuuuuu."
I am very much aware that not everyone has someone to share with. The way I see it, there are those who are either physically alone on this planet, those who are mentally alone on this planet, or spiritually alone. To have vacancy in any of these areas, can really be defeating. Sometimes that goes unnoticed.
Wow, that's a heavy start to day 9! Not my words, but mine to share. Day 9 and I am waking up to a house full of family. We have a day full of family time (with family and family of friends). Tonight we will enjoy family. Tomorrow I will enjoy family..and football..and family again. My family is large. You are my family too. Family is everywhere, and thank God for that.
This Christmas season, I have been most excited for this single week. Not for any one day, or person, or event, but for what will be a week of relaxing, enjoying all the prep work that has been done, and simply savoring time with family and friends. You have NO idea when it will be your last visit with that eccentric aunt, or the over loud cousin who forgets he's inside, or the neighbor who just wont clean up that one thing on the yard, or the sibling who still resents the sweater you gifted last winter, or the parent who loves you so much they don't know when to stop checking on your grocery list.
Today, tomorrow, next Wednesday, could be the very last moment you have to share this life with that person. What have you learned from them? What have they taught you about yourself? What have you SHARED with them? Have you maintained a safe distance and strong walls around your heart so they do not have the chance to get close? Have you allowed your own vulnerability and flaws to be a topic of discussion? Nooooo....why would we go that far??
Why would we go so far as to share life with someone to the point that you are not afraid to start the conversation with a hug, which leads to a responding squeeze, which leads to a feeling of hope, then joy, then conversation about the meal which leads to the discussion about plans that day, then memories about the past experiences and hopes for the future and fears that come with that, then current struggles, current hopes, current joys, current feelings about life....why would we do that?
Why wouldn't we do that? What good reason do you have to NOT share life with a certain person? We don't share with everyone the same way, but we can share elements of our world, with various people. If you aren't surrounded by that kind of family (again, blood, marriage, friend...all count), then you need new people, and I"ll be the first in line to give you that hug.
I share the joy of ...whats do we call this... sharing life with others
Rejoice - Punctuation - Reunion - Rest - Presence - Doing for Others - Anticipation "Rejoice Punctuation, and Reunion with Rest, while Anticipating sharing your Presence in doing for Others" ...this will be fun Day 8! Based on my scientific research, there are 4 more days before Christmas. I'm not counting the day of...I mean today plus 4, which lands us on the 24. The red carpet walk, before the party. This year, the holidays have felt different. There is no single reason why. I can tell you many reasons..but not all today. Actually, I started the season in a humbug mood, especially when I saw 'Santa' for sale in the stores, before my jack-o-lantern was lit. That just ticks me off. Dear Mr. Retailer...stop it. I'm pretty sure I spent less time this year looking for sales, coupons, lines, etc. We considered what we wanted to buy, made a list, checked it twice, then fought the internet traffic for a place in line, only to check out with great ease. ...and thanks in part of Momma-elf in the GA workshop, who agreed to wrap some of these quick online purchases, upon arrival. Point, click, shop. A few in-store purchases were made too, but we were focused. That is NOT easy in Bed, Bath, and Beyond. I will give you a reason why I need to stop and consider each and every booklight, pop up speaker thingy, and eye mask. Not to mention those large plastic cups with your fav sports team. I do NOT need one (have them!), but feel a need to look for our teams every time I walk buy...I mean by.
I could go on..but my point is that our shopping was easy, and basically done. Stress reduced! The house has been cleaned well enough and we are ready for family and friends to visit. The tactical planning has paid off in spades. So is planning my joy? No...although is DOES make me happy. I am a planner to a fault sometimes.
My joy is the music! *WHAM* That just happened. What the heck, lost my stream of thought....?
I've made a point to listen to one of my fav radio stations this season, and really listened to the Christmas songs. Rather than letting those songs aggravate me, in the car, in the house, at the grocery store, in the store parking lots (really, Mr. Retailer was blaring...I mean sharing...tunes into the parking lot!), I chose to enjoy them. I chose to enjoy the music of the season, and it has been an excellent side kick while staring at webpage to compare deals. I sing loudly and off tune, in the car, in the house, and at work. Actually less singing, more whistling at work. Fa la la la la, la la, la la
SO, find a station, tune in, and lighten up! The prep work has been done, you've walked the red carpet...now lets relax and start to really appreciate the holiday, the wonderful people around us, the accomplishments of the past year, the struggles we've over come, and the excitement of new things ahead.
My name is Rachel, and I have a neuromuscular disease called Myasthenia Gravis. This crazy condition was bestowed upon me in late 2008, and has the ability to render your body weak and sometimes useless unless proper treatments are administered. I've learned so much, and I feel blessed I am able to share.
I'm nervous to write, but have learned that I should. Maybe you'll take something away from my nonsense.
