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.