Tag: Scleroderma

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Gratitude Inspire

Food for Thought: What We Put Into Our Bodies Matters

food

Food.

That simple thing all of us must consume daily to sustain life. No matter how poor or rich or what type of cuisine we are used to, it all boils down to calories, nutrients and minerals that are there to nourish the body, mind and spirit.

“Let food be thy medicine, and medicine be thy food.”

-Hippocrates

As I think through the single biggest change that allowed me to live through the death sentence of scleroderma and stay healthy enough to not just survive –  but thrive – more than 15 years with this horrific disease, I look at food.

What We Put Into Our Bodies Matters

The familiar phrase, “Garbage in, garbage out” doesn’t just apply to a computer program.  It applies to food, too.

It is the way we use food to nourish ourselves that expresses itself outward as health, illness, attitude, and even hair texture. Hangry – being irritable and angry because you’re hungry – is humorous, but rings with truth. It is our inner core saying “feed me.” I know I can’t go on with a right attitude or energy without nutrition of some sort.

“When diet is wrong, medicine is of no use. When diet is correct, medicine is of no need.”

-Ayurvedic proverb

Back in 2004 when I was in the deep throws of scleroderma, before I had knowledge of what disease I had, there was nothing but processed foods in my home. As a working mom in a new marriage, things in my life were hectic. Maybe you can relate.

Then my world stopped. Complete stand still.

I received the diagnosis that I was extremely sick. Death was not far off.

And there weren’t a lot of medicines to help, either. The medical professionals could help with the symptoms – but not with the underlying disease.

Eat Healthy, Live Healthy, Be Healthy

After receiving that diagnoses, I went home and did a lot of thinking.
food, health
I started to think about what I was putting into my body. And I decided that I wasn’t going to simply accept the diagnosis. I was going to live my own truth.

And that started with my diet. That day, I took the step to change my life.

Please know I am not saying the outcome was rosy and perfect from that day forward. That is not the case.

Food, diet, change, and grit all went into a massive fight for my life. Fifteen plus years later I am still here. That’s proof enough for me.

It is 2020 and I am better than I ever was.

Attached here are two photos, one from back in the late 2000’s when I was getting ready to do a walk to raise money for scleroderma.  My hands were so swollen they barely moved, my skin stiff and hurting. But I was clearly still in the game of life to win.

Fast forward to one from a few months ago, thriving. A picture truly is worth a thousand words. 

For innovative ways to transform your life so you can thrive in all the ways you deserve, check out my book: Unstoppable: A Recipe for Success in Business and Life.

 

 

 

Categories
Gratitude Inspire

FEAR: False Evidence Appearing Real

FEAR

Fear. We all have experienced it.fear

It comes in many forms. There’s the fun fear of Halloween – spooky decorations of ghostly and ghoulish figures that scare us in an amusing way.

Then there’s the other kind of fear, the deep, dark hole of fear we experience at times during our lives. It can paralyze us emotionally, inhibiting us from moving forward. 

 

“Being scared is part of being alive. Accept it. Walk through it.”
– Robin Sharma

 

During the dark times of my illness, I walked myself through fear countless times. Perhaps I can help you walk through yours.

Fear Feeds Upon Itself

Years ago, I wrote in my book that the concept of fear is “False Evidence Appearing Real.”

I called that part of my 2 a.m. voice. It was the part of my brain that never seemed to sleep. I would crack my eyelids open, my thoughts swirling. A toxic mixture of panic, pain and fear combined to create a black hole which I spiraled into.

I realized this dark hole was a challenge that was presented to me: it was based on the false evidenced formed by my own fear.

My fear was composed of ideas, concepts and facts made up in my head. It embedded itself as a reality in my brain.
It appeared as a reality – but was not.

I began to recognize this pattern that frequently repeated itself, this 2AM voice: I knew I needed a rock solid defense plan when I found myself in this place.

But I also understood that all fearfulness isn’t hurtful. Like at Halloween, for instance. Getting scared isn’t always such a bad thing, oftentimes it’s followed by laughter.

And fear also gives us a sixth sense, so to speak: which says, ‘take notice.’  It is what gets me to use caution when I walk to my car at night, or when I lock my door before going to bed.

But it was the 2AM fear that I needed to deal with.  And that’s what I developed a defense plan for. 

My Personal Toolkit to Combat Fear

When I was so sick, when I could hardly move, days and nights when the pain would wake me and cause my heart to stop, I knew I needed to find a solution that was workable for me.

Praying the pain away was not enough. I needed more.

I created a toolkit that consisted of a few tried and true solutions that work for me always.

Key Elements of My “Getting Rid of Fear” Tool Kit:

REACH OUT:
Instant message or text a friend. Technology lets me see when my friends are online and available. If it’s 2AM and the dark hole of fear is pulling me down, I reach out. I tell my truth to one of just a handful of these friends and let that person talk me down from the emotional fear-fueled ledge.

 

“True friends are those rare people who come to find you in dark places and lead you back to the light.”
-Steve Aitchison

 

BREATHE:
I work on calming and centering breaths. Breathing in a word like peace and calling out my name. Breathe in the positive light of peace and exhale the negative darkness of fear. Actually imagine the bright light coming into the top of your head – and imagine the dark cloud of fear exiting at your feet.

Start Counting What You’re Grateful For

Gratitude has become a huge part of my solution to confronting fear. When we are grateful for the good in our lives, however small, we find that more goodness naturally flows to us.

“Gratitude opens the door to the power, the wisdom, the creativity of the universe.
You open the door through gratitude.”
~ Deepak Chopra

So start counting! I begin to count all the things, people, experiences, and positives I have in my life. I use my fingers to try to count them. Always I forget how many I have counted, and I end up smiling. Even while in excruciating pain from my illness, this has worked. It helped reframe my brain.

Those are just a few of the ways I like to put fear on the curb and walk through my life!

For more ways to transform fear and reclaim your life, check out my book: Unstoppable: A Recipe for Success in Business and Life.

Categories
Gratitude

Happiness & Gratitude: Your Secret Recipe for Good Health

gratitude

“It’s sad that bad things have to happen in order for us to stop and look around.”
― Megan Duke

I know the meaning of that profound statement.

Had I not lived through a devastating health issue, I never would have believed that feeling happy affects your health. And there’s proof of that: scientific evidence suggests that positive emotions can not only lead to a healthier life, but a longer one.

The brain chemistry of joy – however minimal – brings us many positive health benefits, including a stronger immune system, less risk of heart disease and quicker recovery times after illness or surgery.

I’m not saying that singing a happy tune on your deathbed will change the outcome. What I am saying is that attitude is everything.

And I speak from experience: I have lived with the excruciating pain of scleroderma.

Walking Through the Dark Valleys of Deep Pain

During first few years of dealing with scleroderma, I was in so much physical pain that I needed two pain patches at all times just to be able to function on any level.

The results of these two patches was both good and bad. I describe these feelings in my book, Unstoppable: A Recipe for Success in Life and Business.

“Instead of focusing on the side effects, I shifted my focus and did daily gratitude lists.
Regardless of how horrible I felt, or the amount of pain I was experiencing, I made it a point to find something to appreciate every day.”

Instead of concentrating on my deep pain and misery, I began counting my blessings. The result? I began to feel a bit better each day. It was as if I was living the words “whatever you focus on grows.” It became how I not only survived – but thrived.

Weaving in Nuggets of Gratitude…Into Everything

In 2017 I flew to Chicago to Northwestern Medical Center to meet with a doctor who specialized in stem cell transplants, in hopes of putting the scleroderma in remission. I made it through a phone interview and a paper review.

The third step was to go in person. I endured three days of exhausting tests. I finally met the doctor who would approve – or deny- a stem cell transplant. I remember sitting alone in the exam room, wondering if I was going to be given the sentence of death – or life.

I was asked a myriad of questions in rapid succession.

Interwoven in my answers were nuggets of gratitude, blessings and reflections on the positive side of things. 

gratitude

The doctor stopped his questioning, looked up from the paper he was writing on, stared straight into my eyes and said, “With your attitude, this is going to be a joy to see  how well you do.”

In that split second I knew two things:

  • One, my attitude of gratitude revealed happiness which the doctor felt would be extremely advantageous for the outcome of this cutting edge, extremely dangerous treatment and…
  • Two, I was committed to recovering from scleroderma.

My Gratitude Glowed from Within Me – and Saved Me

After reviewing all the tests, the doctor noted that after all my body had endured, my heart was growing weak. This would add risk.

Maybe I was not a great candidate. I had been sick for over 14 years. But my attitude that came from happiness about life – no matter how hard – had radiated in and around me.

“I would climb whatever hill I needed to, not give up, and fight like my life depended on it.
 It did. I climbed – and I am still here.
Better, way better, than I was even in 2005.”

The secret – then and now – continues to be a joyful, happy attitude, gleaned from living in gratitude. Each and every day. I have chosen to always look for the blessings. And they are always there.

I never gave up. I fought because my life did depend on it.

And I focused on each and every blessing that flowed into my life. I know that you can, too. I’d like to share my story with you, hoping it will help you in your journey.

See more here: https://betsycraig.com/order-book/

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Speak Stem Cell Transplant

The Miracle of Harvest Day

Monday February 19, 2018

The day began at 6AM with me waking up so super excited I could hardly contain it.  I am so ready for stem cell harvest day.  So we began today the same as the last 5 days, shots to keep those stem cells hopping.   Rocky did an amazing job each day of administering the shots carefully, completely and with the most love ever!  Rocky Rocks!

Then its pack and off the our new favorite Chicago location, Northwestern Medical center.  Truthfully these folks are amazing.  

Packed up my bag like I’m off to camp for the day. Great stuff thanks to great freinds

Top shelf care all the way. One person nicer then the next. 

First its blood work to make sure all my numbers are good enough to donate my own stem cells back to me.  The ups and downs the last two weeks of all these medications have made me a science project changing white blood counts, hemoglobin, platelets, red blood cells and so much more.  You see everything has to be perfect or else they need to add something or take something away to get me ready.  Here’s the bottom line…..I was perfect as I was. 

Next it’s time to get a catheter put in my neck to take and receive blood.  I think I’ll skip a super close up pic but it is cool as anything!!!!! It has there ports, an “inie” an “outie” and an extra.   Blood coming and going.  turns out the clean through the entire volume of my body’s blood 3 times.  (hope that doesn’t gross anyone out.  I still thinks its amazing)

Not my prettiest Picture but you can see my connections sticking out of me. They made today so much more manageable.

Mainly today was spent in a recliner hooked up to a machine for 5+ hours letting medical science do its deal.  Amazing care by my wonderful partner in all things Rocky.  Here he is giving me a foot rub to sooth away stress.  Netflix entertains, Facebook makes me feel connected. and ALL I can do is count my blessings.  I am so flipping lucky!

Loved beyond measure. Spoiled beyond reason.

So they need at least 2 million stem cells.  Looks like I have produced those and then a whole lot more!  The are thinking over 10 million.  I will get the final number later tonight and that number is 21 million +.  Then they will take out the catheter and let me leave.  I can leave the medical center and Chicago.  We will  actually leave tomorrow.

A few things were discovered.  I am as of right now this minute no longer immune- compromised.  My blood shows my blood counts better then when I was here to be tested in October.  That is a HUGE relief to me.  They say for me to live my life like normal until I come back here in April.  That I am no more vulnerable then the next person. I sure am way more blessed.

I am standing and rocking this harvest with Gods and all of your help.

Stay as healthy as possible but if I get sick before I come back I need to get well before starting the transplant. We return to Colorado tomorrow night and will live the next 5 weeks with care until I get to return for part 2 of this cool process.  Did I tell you how cool I think this is?

Thank you all for your love, your encouraging words, your messages.  I can not imagine how someone goes through this without a tribe. You are mine!

And that’s a wrap!!!!!
That bag hanging up there on the top left of the picture has 21 million + stem cells in there to get rid of my Scleroderma in April.
Categories
Speak Stem Cell Transplant

Thank God I’m a Woman!

My very first thought this morning when I woke up, still rolling around in the bed this morning was simply, Thank God I Am A Woman!  Being a woman means I get to have a monthly visitor.  I think we used to call it “our friend” (who the hell came up with that stupid name? saving for another day).  Well without going into details about my “friend” I will simply say that it prepared me for body aches out of nowhere. A slamming in my face, take my breath away ache.  On the upside, cause you know I always have an upside, I have had experience handling the discomfort, pain and knowing that this too shall pass just like most women walking the face of the earth.

My extra little pop quiz in life has been the bonus of this disease called Scleroderma.  My long (almost 14 years) history with having Scleroderma has taught me to be one tough warrior woman.  Pain in the past I thought was literately going to kill me, DIDN’T.  So in a very sad, sick and oh my goodness what a shame way, I can handle this level of what I would call this morning, discomfort. A 2 on the scale.  Tylenol will fix this.  People who are chronically ill will get this.  Being able to handle, still function and live life even when not 100% is how I operate daily.  Or else I would have curled up and cash my ticket in by now.

Let me get to what is happening now this weekend and the last few days for all of you who are following along with what I am calling my “journey back to health”. I began the shots on Friday.  They are shots of a drug called Neupogen and it is a series of shots for the 5 days leading up to and including the morning of harvest of my stem cells.  The drug helps get my stem cells to move around a whole lot more then normal especially into my blood system which is where they will pull them from on harvest day medically called collection.  My harvest day is Monday Feb 19th.

So I get the privilege and honor of donating my own stem cells to myself.  I will come back in April to get them put back in my body and those will be additional blogs at that time for sure.

With all these shots comes crazy side effects and I am still working on the side effects from the one massive dose of chemo they gave me a week ago.  The reason they gave me the horse size dose of chemo was to begin the mobilization of my stem cell out of my bone marrow.  So to be honest, the shots aren’t bad, they are sort of no big deal to take but the entire procedure, process and all the medications both to do things and to prevent things, that’s take some warrior energy for sure.

Because of the chemo I got 8 days ago I will loose my hair.  So I got a great short cut from a nice man named Dennis at Salon 161 that is on the same city block as the building that houses most of my doctors.  He was super kind, caring and understanding about what I needed in a haircut and for why.  What a blessing to run into this guy who has been cutting hair there for over 32 years.  Hoping that the shorter cut will lessen the shock when it begins to fall out. I am still expecting a shock and needing time and tears to adjust.

Great view from Condo

For the last 24 hours I have stayed in the condo 100% because my white cell count is low thanks to the chemo doing exactly what it is supposed to do.  In a few days after the Harvest I should be fine being out and about just need to watch out for sick folks cause I have to stay healthy to come back here in April and get these “stemies” (the cutie name for stem cells in these circles) back.

The goal is for 2 million or more of these little suckers to get harvested through a tube placed in my neck on Monday.  Right now  I am growing them in my body.  Reminds me of the wonder of growing a child. Our bodies, science and, if you believe like I believe, God are frickin amazing!   Until Monday I am in time out.  I am happy in time out.  I will watch more movies, enjoy more olympics and nap. Thank you all for your comments both here and on Facebook.  You words, sharing, connections and support are simply priceless.

 

 

Categories
Stem Cell Transplant

Stem Cell Transplant: The Back Story

In June of 2017 I made a decision to join a fundraising walk for Scleroderma in support of a friend.  You see even though we share this horrible disease, she had seen her disease attach her foot and in short order lose her leg.  My buddy, Eileen had the very best doctors at Johns Hopkins and if there was a way to save it I have full confidence it would have been saved.

So when I saw this walk to raise money for Scleroderma was coming up in 10 days in Denver I jumped in once again.  I used to support those walks yearly but stepped away for a number of reasons none of which mattered this past summer.  I was able to attend schedule-wise and my feet worked and I had both so I decided to walk.  Up went the fundraiser page and off I went to walk.
Turns out that act one to support for a friend, changed my life forever.  To think I almost missed it.  Simple seconds and inches would have made it not so.

At this walk I met a lady who told me about Stem Cell Transplant.  You see I was having a bad lung day that day thanks to my lung disease brought on and made worse daily by my Scleroderma.  She told me point blank that there was new hope for people like me through stem cell transplant and I needed to check it out. She lead me to Dr Richard Burt at Northwestern Medical in Chicago.

As luck would have it I had an appointment with my Scleroderma Doctor in Denver the following Wednesday.  Through many years I have been thought hell and he has been the quarterback of my medical treatment.  I asked him if stem cell could help me.  He agreed it was well worth a look and went about setting me up with the first official step, the referral to NWM in Chicago.
Next step was a phone call screening that I PASSED then a paper submission of hundreds of pages of medical records.  PASSED that as well. Next was to hope a flight to Chicago and endure 4 days of testing.  One day I will write the blog about the testing week but for now let me just say, PASSED.

Then the heartbreak.  Insurance said NO. Now what? We would of course appeal but what in the mean time.  Wait?  I had learned in Chicago that Scleroderma had caused the much dreaded heart disease now called PHA.  That was not good and both the heart and lung diseases were going to simply continue until I make a drastic change.  In my mind and based on 14 years of trying everything single thing else….stem cell transplant is my last hope.

Well I looked at two things closer.
1. I have a successful company that I could do some owner equity to get a chunk of cash out to help but was not unlimited
2. I had retirement accounts and finds in my husbands name that could be borrowed against or used.

I mean whats the point of retirement $ if I am not going to live long enough to use it?

We (my husband and myself)  have gathered the $ and are looking to get all the details in place.  It is a long long process.  We will need additional $ above and beyond that 100K+ for lots of stuff, co-pays, medicine both covered and non covered, personal care, food, travel, some hotels, keeping 2 houses going, the list goes on and on.  I don’t want to bankrupt our future but for me, I want a future.