Ok ya'll.... can we talk about MCAS and Mastocytosis for a second..... .
This "illness" has caused me so much grief, stress, and pain over the past 27 years of my life. I say grief because I am mourning the loss of my own life. My own existence is limited to my health. I say stress, because I never know when the other shoe will drop, when I am having a good stretch of my health. And I say pain, well because even looking through these few pictures of the past week, will tell you.... even the sum of 30 pills a day, will not stop my mast cells from running me into the ground. .
Everything revolves around my health. My social life, my work life, even my own ability to plan out something months in advance, because I have to "take things one day at a time".... I hate that saying, sometimes..... I hate it because I feel it keeps me in a box. It keeps me from wanting something more than the day to day monotony. I have always been a free spirit, a very spur of the moment, go with the flow kinda person. But it seems the past 5 years, that I have been in this flare with my mast cells, has kept me in a box.... .
I just want to be free.... free to do what I want. Free to be able to just go and not worry if I have taken the right premeds to prevent a reaction. Free to not constantly live my life, going from doctors appt, to calling the insurance companies, to dealing with everything else that goes along with my health. Its stressful.... Its tiring.... It wears you down, in more ways than one.
#Freiheit ....ein beflügelnder Gedanke, oder? Wer möchte nicht gern frei sein? Frei von Angst, Druck und Zwang, von den Erwartungen anderer, oder gar von einer quälenden Sucht... Es gibt sicher niemanden, der keinen Wert auf Freiheit legt. Und so richtig zu schätzen weiß man sie erst, wenn sie einem fehlt, oder?
Die Bibel sagt uns, dass Jesus durch seinen stellvertretenden Tod am Kreuz die Freiheit für Dich und mich mit seinem Blut erkauft hat. Aus purer Liebe. Wir brauchen dieses wunderbare Geschenk nur noch anzunehmen, sozusagen die Hand auszustrecken und es ergreifen: "Wenn euch der Sohn Gottes befreit, dann seid ihr wirklich frei." (Johannes 8:36) "Wirkliche Liebe ist frei von Angst. Ja, wenn Gottes vollkommene Liebe uns erfüllt, vertreibt sie sogar die Angst." (1. Johannes 4:18)
"The moon is friend for the lonesome to talk to.
To hear another soul and to whisper to another soul;
To be a lantern in the darkness
Or an umbrella in a stormy day;
To feel much more than know.
To be the eyes of an eagle, slope of a mountain;
To be a wave understanding the influence of the moon;
To be a tree and read the memory of the leaves;
To be an insignificant pedestrian on the streets
Of crazy cities watching, watching, and watching.
To be a smile on the face of a woman
And shine in her memory
As a moment saved without planning."
What that all means is that Voodoo is creative force: it is a belief system joined in unison with religion. They are compiled together…always to be learned together to take advantage of the creative force. When we learn about that force we get math, science, arts, etc. The math, science, and arts are the outward expression of who we are inside. The Africans had mastered religion. And religion was the explanation of science. We didn’t separate religion from science. Europeans separated the two.
When we take an inward look into self we start to unravel life, which is the mystery. When we start to unravel that mystery we become a genius. So, Voodoo literally means that whenever you take an inward look at self, you become a genius. When the Africans of Kemet mastered Voodoo they built great pyramids, great temples, great universities and great shrines to their ancestors. That is why Thales encouraged his students to “Know Thyself.” 🕉
Another Beautiful Day! Don’t waste it! And know that your words have power! Daddy day care today soooo...looks like 150 count per(push-ups/crunches/body squats) which should be plenty for an off day from the gym. Have a great day all you Beautiful Fitness Souls .
You gotta have faith! It’s not always gonna happen the way you want it too, in fact it probably never will. But trust, that there are many paths to get you where your headed. Your journey is unique and can’t be compared to anyone else’s.
John 8:1-12, Holy Bible (King James Version) --- "Jesus went unto the mount of Olives.  And early in the morning he came again into the temple, and all the people came unto him; and he sat down, and taught them.  And the scribes and Pharisees brought unto him a woman taken in adultery; and when they had set her in the midst,  They say unto him, Master, this woman was taken in adultery, in the very act.  Now Moses in the law commanded us, that such should be stoned: but what sayest thou?  This they said, tempting him, that they might have to accuse him. But Jesus stooped down, and with his finger wrote on the ground, as though he heard them not.  So when they continued asking him, he lifted up himself, and said unto them, He that is without sin among you, let him first cast a stone at her.  And again he stooped down, and wrote on the ground.  And they which heard it, being convicted by their own conscience, went out one by one, beginning at the eldest, even unto the last: and Jesus was left alone, and the woman standing in the midst.  When Jesus had lifted up himself, and saw none but the woman, he said unto her, Woman, where are those thine accusers? hath no man condemned thee?  She said, No man, Lord. And Jesus said unto her, Neither do I condemn thee: go, and sin no more.  Then spake Jesus again unto them, saying, I am the light of the world: he that followeth me shall not walk in darkness, but shall have the light of life."
"When my son was two months old I noticed a flat spot had developed on the back of his head (a condition I’ve since learned is called plagiocephaly and brachycephaly). When I brought my concerns up with his doctor, she told me it would go away on its own and to do more tummy time.
At four months when it was only getting worse, I voiced my concerns again and was referred to a “specialist” - a pediatrician. We were told again to do more tummy time and that it would round out on its own. At this point I started feeling extremely unheard, frustrated and guilty, and the shape of my son’s head occupied 100% of my thoughts, 100% of the time.
Another four months later - still no progress. We decided to look into it further and worked with an osteopath who referred us to a clinic that actually specialized in head shape. Because of all of my concerns being brushed aside, and a lack of understanding from general doctors about brachycephaly and plagiocephaly, we almost missed our window for effective treatment with a head shaping helmet.
Hours of googling and many appointments for measuring and fitting and re-fittings later, I now know so much about head growth. But that wasn’t the lesson. What I learned in all of this was to trust my mama instincts. I learned that you are your baby‘s best advocate. If you feel like someone isn’t listening to you - find someone who will."
Thank you so much @hanmayaehr for sharing a piece of your story with us. We are not meant to go through our struggles alone and your openness and honesty is inspiring. Your story is sure to help some mothers and other strangers out there 💕 #mothersandotherstrangers