My 2nd Brain-a-versary!

Today is my 2nd Brain-a-versary.  Which means I am in REMISSION and I live without my tumor and this horrible disease.  It’s an exciting day for me and it’s a sad day for me.  It’ more important than my birthday, as far as I’m concerned.  I’ve come pretty far since the day of my brain surgery but I still have a long way to go.  It’s hard to see how far I’ve come or even appreciate it when I feel so far from the real me inside and I’m still so fat.

From the time I came home from the hospital from my brain surgery I couldn’t walk from the car in the driveway to the door of my house without having to stop and take a break.  It left me winded and all of my muscles hurt.  I cried everyday for the first year.  I threw up every morning for 18 months and had nausea throughout most of my day for over a year.  I had massive blinding headaches that also lasted 18 months and were a daily battle.  I had severe anxiety and would startle easily.  I had to medicate myself at least twice a day to get through the workday.  It was so overwhelming to have to be around people and even speaking and reading was really difficult.  If I had to carry on a phone conversation for more than a few minutes I felt like I would jump out of my skin. I was so uncomfortable having to interact with anyone.  About 9 months after my surgery someone honked their car horn behind me and I jumped really high and started crying because it scared me so much.  My pituitary gland didn’t start working on its own until after a year and it still lags a bit.  Because of that I don’t release the right amount of cortisol to help me in a flight or fight response.

In the beginning, the stress of the TV turning on, someone turning on a light, someone coming around a corner would startle me and I would cry.  I had no strength.  I couldn’t even lift a gallon of milk for myself.  It was pretty frustrating to go from literally lifting a sectional sofa and putting it on top of my car, by myself, to not being able to pick up a hardback book.

My strength was fake, my energy was fake.  It was all from the tumor and most days I miss my tumor still.  As ridiculous as that sounds, the thing that was killing me I miss most days.  I felt like I could go and go and never get tired.  I slept maybe 3 hours a night.  I ran 9 miles a day 6 days a week and on the 7th day I ran 13 miles.  I loved it.  Other moms never understood and were always asking me how I do “it”.  I guess the “it” was never feeling tired and I could do it all.  I miss that.  It was about 5-6 years that I was undiagnosed with Cushing’s disease from what the doctors think.  Which means most of my adult life was living with all of this energy.  Now I feel lethargic compared to that.  I’m lucky to be able walk 2.5 miles.  If I do make it I have terrible shin splints that take forever to heal.

After two years I still have to sleep 9-10 hours a night and most mornings I wake up tired.  I can carry groceries from the car and I don’t wear out as easily.  At least I can go do an activity all day like a normal person.  I’ve lost 45 pounds since my tumor was removed but that was in the first 5 months and since I had to start back on steroids again my face is puffing out and it is almost impossible to lose weight.  I still have 40 pounds to lose.

But, I’m here. I’m alive. I get to see my kids grow up. I no longer have pre-diabetes, hypertension with scary high blood pressure, acne, rage, major anxiety, major amounts of weight gain in short periods of time, trouble healing and easy bruising.  The most I ever gained was 10 pounds in 2 ½ days and it was miserable.  Most of those cured immediately when the tumor was taken out.  I can sleep.  So, I’m grateful.  What does Joyce Meyer say?  “I’m not where I want to be, but Thank God, I’m not where I used to be.”

So, today I celebrate my accomplishments and remember that even though it might happen slowly, I’m getting there.


3 thoughts on “My 2nd Brain-a-versary!

  1. Thank you for sharing. I believe I am a highly likely candidate to remove my tumor as well. Reading this kind of frightens me but prepared me. My friends tell me not to research. Not to read. Don’t scare myself but it’s best to prepare for the possibilities right. Thanks again and congratulations on your milestone. You sound like a strong woman. Take care of yourself. I will be following you!! 😊

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