Chasing Silence

1-2..hi, is this thing on? Does it still work? ;)

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.

Do you have a spoon?

....“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.

Fun Facts From reFinement (FFFF?)

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!

BIG things happen!

Where do we begin?

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.

What is MG? As described by the Myasthenia Gravis Foundation of America:

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. 

How do you say Myasthenia Gravis? Click here to listen.

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. 

That was then....2010.

whoops

I'm supposed to share something today, but my mind blanked on the way to the computer. 

If you know... will you share with me?