Off the Steroids I go…

After weighing the pros and cons I decided to come off of the steroids I was on for my microscopic colitis. It just wasn’t worth it. I had almost all of my Cushing’s syndrome and only one pro to using the steroids. My body has been through so much. Being back on the steroids was not fun at all. Because of the steroids it threw my body way out of whack and I had to start taking anti-depressants and anti-anxiety pills. I had weight gain, depression and sadness, greasy hair, pimples, round face, the hump was appearing on my back again, moody and irritable, bloated and uncomfortable, indigestion and much more.

It has been about a month since I’ve weaned off of the steroids. Finally I feel like the steroids are out of my body. The Cushing’s syndrome is slowly going away. The first thing that I noticed is that my hair isn’t greasy anymore. I had to wash it once or twice every day. Now I can go up to four days without my hair getting oily and gross. Also, I can wear my hair down. It’s not super crazy and curly and frizzy. I can flat iron it and it behaves all day.

Last week I had to go get an iron infusion since I am severely anemic. It took four hours for the whole IV process. Other than the time it took, it wasn’t that bad. I felt drained for a couple of days afterward but I was already feeling so tired from the anemia anyway. After talking to my Endocrinologist we finally came to the revelation that my health problems and issues with healing and catching everything is because of my extreme low iron levels. It always feels good to have an answer.

Yesterday I finally felt like I had more energy. Certainly not 100% yet, but a bit more. I stayed up an hour later than I usually do and I woke up a couple hours earlier than I have been on the weekends. I’m excited to continue to have more energy and get my health back. Only good things to come now.


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.


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.