Thursday, January 7, 2010

Who is Masto Mama?

"My flesh and my heart may fail, but God is the strength of my heart and my portion forever." 
Psalm 73:26
I'm a wife to the most amazing man
and the mom of two charming children

We have a big yellow dog who we just adore.

We live by the ocean in California and spend as much time as possible at the beach.




I love Jesus.
He's my strength, my hope and my joy....I strive to please Him in all that I am and in everything I do.
I homeschool our children full-time

and I am a former public school teacher.


I am also a professional family and child photographer
but I am obsessed with photographing waves

birds


and sunsets.


Photography isn't just a career to me, it's my passion.


I also design prints on Etsy.
Hebrews 6:19

But, I live with a rare, chronic, incurable, and life-threatening disease called Mastocytosis. The type I have is Monoclonal Mast Cell Activation Syndrome. It's the only primary Mast Cell Activation Syndrome--the other two being Systemic Mastocytosis and Cutaneous Mastocytosis.  

I also have neuro-muscular abnormalities but a specific cause can't be identified at this time; however, my doctors believe it is a result of my mast cell disease.

 My 8 year old son and 11 year old daughter both have mastocytosis as well, along with other conditions, even though it isn't classified as an inherited condition. 

{The name "Masto Mama" comes from being a mom with MASTOcytosis, and having two kids with it too}

I was diagnosed with mastocytosis 6 years ago--2 years after I discovered that both my kids have the disease-- and 20 years after my symptoms first started.

The disease originates in the bone marrow, where mast cells are made.  I have abnormal mast cells in my bone marrow and these abnormal cells migrate into every tissue in my body, and release chemicals into my bloodstream that cause an array of often debilitating symptoms.

It affects everyone differently; but it affects my GI tract (hyperacid secretions, severe acid reflux, peptic ulcer disease, chronic diarrhea, abdominal pain), brain (migraines, anxiety, brain fog, tremors, vertigo, and dizziness), spine and discs (degenerative disc disease), nerve roots and muscles (myopathy, myoclonus, fasiculations, peripheral poly-neuropathy, and episodic weakness that requires me to use a cane) , joints (osteoarthritis, pain, swelling), airway (reactive airway disease/asthma, frequent shortness of breath), sinuses (chronic sinusitis/hayfever without allergies), bladder (Interstitial Cystitis), kidneys (Polyuria), skin (hives), iron counts (anemia), vitamin levels (vit. d deficient), heartrate (episodes of tachhycardia), blood pressure (episodes of hyper and hypotension), and my endurance and energy levels (fatigue quickly and easily). I also get episodic fevers, sweat excessively/heat intolerance, and my ankles and feet swell.  I have chronic blurred vision that isn't corrected with lenses and is thought to be caused by occular myopathy--my eye muscles fatigue 5 times faster than normal resulting in a blurry haze over everything I can see.

I am chronically dehydrated so I receive 4-8 liters of IV fluids via a port-a-cath in my left chest weekly, at home.

and I have 23 prescription medications...plus several over the counter ones.



I blog because I love to write.  I often can explain things on paper (or in this case on screen) in ways that I can't explain verbally.  Sometimes I feel like my mind will explode if I don't type.  It's a life-line to me, especially on difficult days.

My blog shares my heart--my life--my ups--my downs--and all the in-betweens with all of you...when you read, you join me in 

my journey to find joy in my everyday

In the pain

in the sickness

in the fatigue

and in the heartache. 

I seek it when I homeschool,

when I cook dinner,

when I design prints,

when I photograph anything around me,

when I run errands,

when I do laundry

when I clean my house.

I choose it in every moment of my life as I trust in the Lord...even in the most trying circumstances....because His love brings me comfort.


The joy that I choose is not my own; my joy comes from the Lord. 

I can choose it in every moment because it's not from me, it's not dependent on things going my way, and it's not changed by life's often difficult circumstances;


"Do not grieve, for the joy of the Lord is your strength."  
Neh. 8:10
The Joy of the Lord is My Strength

As you read my blog, my hope is that you too will find this joy. 

This undescribable, all-encompassing, joy that surpasses all understanding....

the joy that is my Lord's.

3 comments:

  1. i am so glad i found your blog! i am a christian sister from florida and a new follower on google.
    i have r.a. and sometimes can't walk very well- always always pain- homeschool 3 boys- one with special needs that no one even knows about- we find joy in every day through jesus - even when we have to "do school" in mammas bed while she sits on the heating pad! i'm gonna read more on your blog- i would love to keep in touch- God Bless!!!

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  2. Hi MASTO MOM. My name is Farah . I an very happy to see you blog. I have been thiking of starting one of my own for my daughter Leila . SHe was born wish on 35 cm of intestins so she is considered SHort BOWEL. I would love to talk to you. She had a picc line and she had a central line. I dont know any one who deals with what I do . I know we dont have the same problems but you would understand my day to day life I am sure. Hope and Prayers for you and your famil. I too Choose life and happiness. please if ou get a chance contact me at farahfitz@gmail.com

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  3. HI, I love your blog > I too have been thinknig of starting one for my family and mda daughter diABILITY. she was born with SBS SHORT BOWEL only 35cm. She has had a centeral line and how we have a picc line. I would love to talk to you . I dont know anyone who know what I go through on a day to day basis. I know its not the same thing.. but the little milestones and doctor vistits and wories that a mother has are similar. My email is farahfitz@gmail.com. God bless and take care

    ReplyDelete

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