Wednesday, May 16, 2018

I AM A SOULDIER


photo by: LanellLeone Photography 

Remember in 2015 when Rachel Platten released her Fight Song?
Everyone was gaining strength and courage for their personal battles. Children with cancer, adults losing loved ones. It was idolized by many.

Just as the Fight Song, brings strength to many, I find myself turning to a different song for strength.

Back in July 2016, celebrating Independence Day, Ric and I were running a spontaneous weekend 5K. I hadn't done anything athletic of the such, in over a year. My body was (and still is) recovering from pregnancy. (Will it ever recover? The unknown question we all wonder. Whether I do or don't, I've got a dang cute kid to show for it, and that is worth any sacrifice, in my book.) The starting gun went off and I began pacing myself slowly. The adrenaline of the race carried me for a short half mile. Then, I started struggling. Fatigue in my limbs, tightening of the airways, and the mental game. My goals going into this race were simply; 'to not walk', and 'finish'. However, at this point I was truly certain I wasn't going to run much more, and simply 'hoping' to cross that finish line. I turned to Ric and said, "You need to carry me through this race, because I am done. I need you to distract my mind and start telling me a story. Please, assess my body from your eyes and adjust our pace accordingly. I'll focus on my breathing...you distract my mind and you pace my body.' He began recalling the history of our Country, fighting for their independence. Telling stories of military troops and the wars and battles they had had to endure. How quickly my mind shifted. Here I was 26 years old, in a first world country, a beautiful day, perfect weather, my husband by my side and I thought I was having a hard time. I thought I wasn't going to endure. I reflected back on my own two cousins who served in the Marines. The 20+ mile runs with weighted packs on their backs, through the sand. I thought back on all the Troops who went days on end without sleep in battle, days of physical exertion. I became so humbled and grateful I had tears filling my eyes. I could endure and I was going to finish. I didn't finish pretty, but I didn't stop or walk. We finished just over the pace time, I was secretly hoping to finish in -- because, what athlete ever really loses that competitiveness with themselves? ;)

Now, I have never been a soldier fighting for my freedoms or in a war with bullets, camo and the flag on my shoulder. But everyday I fight for my life, for freedom from this illness.

Years ago when I heard The Killer's song, All These Things That I've Done, the line - I got soul but I'm not a soldier; resonated inside me like nothing had before. It was almost as if Brandon Flowers, knew what I was going through, and was speaking to me. This was exactly how I felt about my daily battle with cystic fibrosis. One that will never stop attacking and one that I will never stop fighting back. I knew I wasn't a soldier in camouflage, but I was my own soul-dier. I'd never be on the battlefield with a gun, but I'd be on the daily, the minute, the every second battlefield of my own body. And that takes courage.  

I may not be a soldier, but I AM A SOULDIER.

The past year as this Sherman Army has grown larger and stronger than I ever imagined, I feel your strength as my fellow souldiers. I couldn't do this without you. 
And so, we release to you, and anyone else fighting as a souldier, our new Souldier Tee.



Xx, M



Saturday, May 5, 2018

TRIALS AND MILES



I had the opportunity to record with Kacee Houle, the creator of the podcast: Trials and Miles. She is a darling woman with an amazing story herself, but has chosen to create a platform for others to share there's. She is a light and we laughed and talked much longer than was saved and uploaded for you. You know when you just click with someone? Kacee, move to Arizona!

Pull on those headphones, plug in that car jack or sync your bluetooth to your sound bar. Hope you enjoy todays adventure and education with Cystic Fibrosis.

 ^^
link takes you to 'podcasts' on itunes.

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If you'd like to hear more of my story, listen to this podcast with Monica from
About Progress.

Xx, M


Wednesday, May 2, 2018

WHAT IS CYSTIC FIBROSIS?


Some facts, figures and numbers. The background of the disease itself.
(words in this color are my interjections) 
graphic made by @curlycocreations on instagram


WHAT IS CF?

Cystic fibrosis (CF) is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time.

In people with CF, a defective gene causes a thick, sticky buildup of mucus in the lungs, pancreas, and other organs. In the lungs, the mucus clogs the airways and traps bacteria leading to infections, extensive lung damage, and eventually, respiratory failure. In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients.
People with cystic fibrosis are at greater risk of getting lung infections because thick, sticky mucus builds up in their lungs, allowing germs to thrive and multiply. Lung infections, caused mostly by bacteria, are a serious and chronic problem for many people living with the disease. Minimizing contact with germs is a top concern for people with CF.

SYMPTOMS OF CF

People with CF can have a variety of symptoms, including:
  • Very salty-tasting skin << THIS SYMPTOM SAVED MY LIFE, tune in tomorrow to hear my birth story on @trialsandmiles podcast
  • Persistent coughing, at times with phlegm 
  • Frequent lung infections including pneumonia or bronchitis
  • Wheezing or shortness of breath
  • Poor growth or weight gain in spite of a good appetite
  • Frequent greasy, bulky stools or difficulty with bowel movements << i didn't realize going to the bathroom was not a strenuous, sweat inducing activity for everyone
  • Male infertility

RISK FACTORS
·      Family history. Because cystic fibrosis is an inherited disorder, it runs in families.
·      Race. Although cystic fibrosis occurs in all races, it is most common in white people of Northern European ancestry.
          Below are my genetics. Basically I was destined (doomed 😉) for CF. 

I did the DNA test from Ancestry.com. It was AWESOME. They are always running sales too. 

HOW DO I GET CF?

Cystic fibrosis is a genetic disease. People with CF have inherited two copies of the defective CF gene -- one copy from each parent. Both parents must have at least one copy of the defective gene.


REPRODUCTIVE SYSTEM COMPLICATIONS

Almost all men with cystic fibrosis are infertile because the tube that connects the testes and prostate gland (vas deferens) is either blocked with mucus or missing entirely. Certain fertility treatments and surgical procedures sometimes make it possible for men with cystic fibrosis to become biological fathers.
Although women with cystic fibrosis may be less fertile than other women, it's possible for them to conceive and to have successful pregnancies. Still, pregnancy can worsen the signs and symptoms of cystic fibrosis, so be sure to discuss the possible risks with your doctor. (This has been updated since more CF women are getting old enough to have babies. Much of this is due to the high quality medications and medical advancements that have occurred.)

psst..miracles do exist 
Despite all this -- I promise, we can (and DO) have great, fulfilling lives!

Did you see we launched the Black Conquer All apparel today? ;)
Xx, M

All data is factual and found on May 1, 2018 from the CFF.org website and Mayoclinic.org


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