This is my “Fight Song”

This is my “Fight Song”

Like a small boat
On the ocean
Sending big waves
Into motion
Like how a single word
Can make a heart open
I might only have one match
But I can make an explosion

Many of you may have noticed my lack of motivation to write, much less post anything, the past few months. It’s not for lack of ideas or the want to write, it is actually due to my well-being. Since last summer I have been fighting off something that none of my doctors could put a finger on. No, none of it is Covid related and I have not contracted the virus.

I’ve had multiple tests and “try this” or “try that” with not much success. My family doctor being at a loss referred me to an allergist and low and behold more tests. The funny thing about autoimmune disorders (well really there is nothing funny about them) is that they are usually an end state of trial and error.

“We have ruled out this… and that. We can narrow it down to maybe this..”

“We have an idea of what all of these tests and symptoms mean, but there is no definitive answer.”

What they don’t tell you at the beginning of the journey is that there is never a definitive answer. Let’s face it, doctors are human too. (Who knew?! lol)

And all those things I didn’t say
Wrecking balls inside my brain
I will scream them loud tonight
Can you hear my voice this time?

This is my fight song
Take back my life song
Prove I’m alright song
My power’s turned on
Starting right now I’ll be strong
I’ll play my fight song
And I don’t really care if nobody else believes
‘Cause I’ve still got a lot of fight left in me

I’m still in the trial and error phase of what my doctor has deemed- Mast Cell Activation Syndrome (MCAS). I have been through many symptoms not knowing that they were all related. (My friends can recall my frustration last summer with my vision.) In layman’s terms Mast cells are allergy cells that control allergic reactions within your body. These cells release “mediators” such as histamine, when you come across an allergen. The itchy eyes, runny nose, or hive reactions are the result of the mediators being released into your blood stream.

MCAS is the activation of these mast cells. What makes this syndrome so special is that the person (in this case me) has a normal amount of mast cells, but the cells tend to go berserk over the smallest things. A bit dramatic huh.

The frustrating part is that I didn’t have the same allergy symptoms every time that the mast cells decided to have a party with their little mediator friends. Last summer my eyelids literally had hives under them (yes it’s as painful as it sounds) and since December of last year I have had this crazy rash that bounces around my body like it’s a bouncy house. Let’s add in massive amounts of fatigue, irritability, and tummy trouble and I’m just a bundle of fun!

So what does this mean for me and my blogs? Well I have to make some changes in my lifestyle, diet, and even my blogs. I can’t commit to everything I once did and I can’t waste time feeling guilty about it anymore. So you may see some changes in my little corner of the blog-o-sphere, but they are changes I can be at peace with. I will still have this site for my naughty things, especially when it comes to pet, and of course the music.

My MindfullyRanting page will have a massive overhaul, I’m moving my toy reviews back to this site and finishing up the ones I still have outstanding (when I am able). As for MindfullyRanting, I’m not ready to let the site name go, but it may become more of a lifestyle (PG-13) site. I don’t want to bog down this site with my MCAS, but I want a place to write about it and how it affects me and my life. There is so much not really known about this syndrome and being able to write through things I experience will help me. If you are interested in learning more, please feel free to follow along once i have it up and running again.

For now, I’m going to take one day at a time and write when I am able. I have so much more to experience in this life and I will not go down without a fight!

I’ll play my fight song
And I don’t really care if nobody else believes
‘Cause I’ve still got a lot of fight left in me

Fight Song– Rachel Platton

15 thoughts on “This is my “Fight Song”

  1. “No definitive answers” is aggravating, especially when multiple symptoms appear with no explanation, but I’ll take “only human” doctors over those who think they’re gods any day.

    Best of luck to you getting everything sorted (and, of course, getting/staying well).

  2. None of this has dimmed your shine in the slightest. You may have intended sarcasm with “bundle of fun,” but the truth is you never stopped being a blast to be with.

  3. A very appropriate song to choose for what you are going through, Jae, and yes, do what you have to do. I for one will be massively interested in reading more about MCAS, and as with all things in life, I believe when we share we help others out there too. Take care of yourself first, is a mantra I am trying to learn.
    ~ Marie xox

    1. I appreciate you being interested Marie. As the results roll in and I finish up the appts I have a better idea on how to care for myself. None of it is an easy pill to swallow, but onward and upward!

  4. Human doctors are the ones you want. Thinking of you Jae and interested to read abut The Mast Cell syndrome. Over the last 6 mths my eczema has become at times almost unbearable. The itching much much worse that I have had before. And also areas of very itchy spots appearing too. That I can’t remember occurring before. It is a constant job keeping myself from scratching and trying to dial down the itching. A few similarities to MCAS so will read anything with interest on this topic
    Take care
    May xx

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