Rough Start

My morning start was just not fantastic and it’s starts like those that remind me that I am a sick person. Ugh. I was busy chastising one of my teens and not paying attention while putting on my mascara and stabbed myself in the eye. Yes, that hurts. But for me, lacking enough cortisol to help me in a flight-or-fight or any kind of emergency/injury, I immediately starting throwing up. Yuck. It took about 15 minutes of constant heaving all the while trying to deep breath to calm my nervous system a bit and laying on the floor. Talk about dramatic. My body that is, not the real me. 🙂

Unfortunately I had to medicate to be able to peel myself off the floor and go to work. Not my favorite, but, it is what it is.

The rest of my morning has been perfectly splendid. The attendance lady is out today so I had to substitute for her most of the morning. I love interacting with all the kids, just stay back if you’re sick. I even had a parent ask how she could request that I am always at the front because of my cheerful demeanor and that it makes it so much more pleasant to deal with. So, yay. Warm fuzzies. I’ll take it.

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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.

The Great Depression

1/26/15 Thursday

Today is another low day. I woke up groggy and uncomfortable. The steroids just make it so uncomfortable to even be in your own skin. I feel puffy and bloated and nothing fits in my closet. I had weaned down to just one pill a day (3mg) and lost 7 pounds and most of the tight, puffiness. Then my microscopic colitis starting acting up again so I had to go back on the full dose of steroids (9mg) and in just 3 days the 7 pounds is back and the uncomfortable-ness is for sure back.

At work I was a mess and could barely keep it together. I kept crying anytime I started to talk and then they asked me to just go home since obviously I wasn’t feeling well. That night I could not stop crying. I felt defeated and like I couldn’t go on. I never felt suicidal but it felt like I would never get better and everything was going wrong and because of all of my illnesses it made it worse for everyone else.

The next morning I woke up and called in sick. I waited in the parking lot of the psychiatric facility for Kaiser until they opened; laying in the back of my van on the floor bundled in blankets. I called the nurse and she talked to me and said she would do her best to get me in to see the psychiatrist on call. She called me a couple times during the hour I was waiting to hear from the psychiatrist to make sure I was okay. I spoke with the psychiatrist on the phone finally and she had me come in immediately.

The on-call psychologist was terrific. She took me through breathing techniques to relax and release stress and anxiety, she had me meditate and I went through hypnosis. I ‘awoke’ feeling calm and as if I could face the world again. Then I went on to see the psychiatrist and talked with him for about an hour. He assured me I would get through just fine and I felt a million times better when I left.

It’s been five days since then and I haven’t had any significant sad moments or feelings of depression. I was given some great tools to help myself cope.

What is Cushing’s Disease anyway?

Cushing’s truly is the disease that keeps on giving. Just when you think you’ve gotten away it just drags you back. It is definitely a slow recovery and I am hopeful that someday I will fully recover from Cushing’s disease and be a healthy woman again.

For those that are not familiar, Cushing’s disease (in my case) is when a tumor is growing on your pituitary gland and it is a hormone secreting tumor. My tumor was the size of an eraser on a pencil. Luckily my tumor was removed on February 7, 2013 and I have been in remission ever since. They went up through my nose to do this brain surgery, which is still just amazing to me.

This little pain causes a great deal of havoc on your body and can be fatal if left untreated. I had no answers for about five years and doctors kept telling me to move more and eat less if I wanted to stop gaining weight. However, the weight gain was caused from an overproduction of cortisol in my body that was released from this tumor. I even had weekends where I gained 10 pounds in just 3 days. You see, cortisol is released in your body during times of stress. This little bugger was releasing cortisol at all times, including when I was sleeping, and even more was released during times of stress.

This tumor also caused pre-diabetes, blurry long distance vision, acne all over my chest, back and body, greasy, oily hair that I had to wash sometimes twice a day, extremely curly out of control hair, when I previously had straight hair, uncontrollable rage and anger, feeling like everyone was mean and vicious, no one understood me, and hypertension. This gem also caused extreme weight gain focused on my waist most of all, a moon face (I hate that term), which is just a really round face and there is no definition, a buffalo hump (also hate that description) which is a large bubbly fat pad between my neck and shoulder blades, yellow in the whites of my eyes. I was also easily bruised, had a slow healing of cuts and infections, and growth of facial hair. That is just to name a handful of the ailments caused by Cushing’s disease.