What in the googly moogly is MCAS?????
As some may know, I’ve just recently been diagnosed with Mast Cell Activation Syndrome (MCAS) I have had many people tell me how wonderful it is and that it’s awesome that it can be treated. Now while it is good that I was diagnosed, it’s not a good diagnosis. Mast Cell Activation Syndrome is an ugly, ferocious, super beast.
Let me explain….
Mast Cells are the sentinels for your body. They are the soldiers that stand on the front lines for each and every organ. MCAS is where the cells become hyperactive and start attacking everything that moves. In some instances, it can cause an anaphylactic episode. The medication used to treat MCAS, is very widespread. The medicine used to treat MCAS can be anywhere from a couple Benadryl, a constant Benadryl drip, all the way to a pill that was first used in cancer treatment. MCAS can also become stronger over time even if it is treated. In short the human body is just slowly becoming allergic to things. In the medical field we call them triggers. For instance, some of my triggers are the following: hot showers/baths, extreme temperatures, tomatoes, codeine, and sunlight. Now these are just some of my triggers and no two MCAS patients have the same triggers.
I have probably had MCAS since birth. It has most likely caused all my problems including my autonomic disorder. Mast cells have attacked my nerves which is why I can’t always feel and my skin has a burning sensation. Mast cells have attacked my autonomic nervous system which has caused my heart to pump more blood because it can’t communicate correctly to my brain. Mast cells have attacked my skin, muscles, and tendons breaking them down resulting in the hypermobility and EDS. MCAS is destroying my body. It’s also most likely in my lungs, which is why my oxygen level drops and shoots back up so high again.
My doctor is hopeful the treatment will work and I will be healthy again. The funny part is even though I know what I’m fighting, I’m nowhere near the end of the battle. Up to this point I didn’t know my enemy. I was swinging my sword aimlessly in hopes of hitting something. Now, I know who my enemy is and I will be able to fight. This doesn’t mean MCAS will be easier or will be more predictable. It means we have narrowed down the battle field. My medications are already 36+ pills (depends on the day) and they are going to go up, which in turn means, I’m dealing with a lot of side effects. My doctors want to limit my medications and bring the number down, but they can’t do that until I’m at a good point health wise.
I know I should be really positive about the answer and the fact it can be treated, but I’m not. I can’t tell you how many times I’ve been told I will be get better by doctors and then end up getting worse. I’m not being pessimistic. I’m being real. I’ve had my hopes crushed too many times to let that happen again. To think I could go back to 90% of who I was seems…...well….it seems like a fairy-tale. Something too far out there to even be real.
But I have a supernatural God who IS real.
I don’t have to trust modern medicine or even doctors. All I have to trust is my God. My God created this world, He split the red sea, caused the sun not to set, sent His Son for me, and so much more. He is the one who has fought for me every step of the way. It wasn’t luck I was diagnosed within 6 months while the normal is 2-6 years. It’s no coincidence I have made new friends and I have kept some of the old ones who stuck by me. God has my back. He always has. Whether I die tomorrow from a car crash, from medical reasons, or from natural causes in my 80s, He is still in control. He never told me to have faith in the doctors, but to have faith in Him.
That’s good enough for me.
Let me explain….
Mast Cells are the sentinels for your body. They are the soldiers that stand on the front lines for each and every organ. MCAS is where the cells become hyperactive and start attacking everything that moves. In some instances, it can cause an anaphylactic episode. The medication used to treat MCAS, is very widespread. The medicine used to treat MCAS can be anywhere from a couple Benadryl, a constant Benadryl drip, all the way to a pill that was first used in cancer treatment. MCAS can also become stronger over time even if it is treated. In short the human body is just slowly becoming allergic to things. In the medical field we call them triggers. For instance, some of my triggers are the following: hot showers/baths, extreme temperatures, tomatoes, codeine, and sunlight. Now these are just some of my triggers and no two MCAS patients have the same triggers.
I have probably had MCAS since birth. It has most likely caused all my problems including my autonomic disorder. Mast cells have attacked my nerves which is why I can’t always feel and my skin has a burning sensation. Mast cells have attacked my autonomic nervous system which has caused my heart to pump more blood because it can’t communicate correctly to my brain. Mast cells have attacked my skin, muscles, and tendons breaking them down resulting in the hypermobility and EDS. MCAS is destroying my body. It’s also most likely in my lungs, which is why my oxygen level drops and shoots back up so high again.
My doctor is hopeful the treatment will work and I will be healthy again. The funny part is even though I know what I’m fighting, I’m nowhere near the end of the battle. Up to this point I didn’t know my enemy. I was swinging my sword aimlessly in hopes of hitting something. Now, I know who my enemy is and I will be able to fight. This doesn’t mean MCAS will be easier or will be more predictable. It means we have narrowed down the battle field. My medications are already 36+ pills (depends on the day) and they are going to go up, which in turn means, I’m dealing with a lot of side effects. My doctors want to limit my medications and bring the number down, but they can’t do that until I’m at a good point health wise.
I know I should be really positive about the answer and the fact it can be treated, but I’m not. I can’t tell you how many times I’ve been told I will be get better by doctors and then end up getting worse. I’m not being pessimistic. I’m being real. I’ve had my hopes crushed too many times to let that happen again. To think I could go back to 90% of who I was seems…...well….it seems like a fairy-tale. Something too far out there to even be real.
But I have a supernatural God who IS real.
I don’t have to trust modern medicine or even doctors. All I have to trust is my God. My God created this world, He split the red sea, caused the sun not to set, sent His Son for me, and so much more. He is the one who has fought for me every step of the way. It wasn’t luck I was diagnosed within 6 months while the normal is 2-6 years. It’s no coincidence I have made new friends and I have kept some of the old ones who stuck by me. God has my back. He always has. Whether I die tomorrow from a car crash, from medical reasons, or from natural causes in my 80s, He is still in control. He never told me to have faith in the doctors, but to have faith in Him.
That’s good enough for me.
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