Tuesday, March 31, 2009

I miss my Husband! And what a good Sissy!

What a couple of days!!

Craig went to Florida yesterday with his big sister Terri to visit their parents for a couple of days and road-trip back with one of their cars tomorrow. It is so cool that they are able to get the time alone without kids and spouses...... Craig thinks it might have been 17 years ago or so since the four of them have been alone together. They got in mid afternoon last night and were able to go to Sana bell Island (a spot where they vacationed as kids) with their parents and there is not a photo of Craig on the wall at someplace called Cheeburger-Cheeburger (did I get that right?) for eating a One-Pound hamburger... Craig sounds like he is having a blast. How cool!

BUT I MISS MY HUSBAND!! :) It is amazing how much I have started to take for granted having him around. It is 11:30 at night and noises in the house are scaring me.... the bed seems too big... I didn't have a clue whether to watch House, Law and Order, One Tree Hill or Law and Order on the DVR because it doesn't seem right to watch any of them without him!

Monday was also had the second round of root canal (one on the left top and one on the right top) visits to my dentist last night. I have had so many horrible dental problems (another side effect of Cushing's) and they have all hurt so badly that I am TERRIFIED of the dentist. This is my first experience with a sedation dentist and so far so good. They gave me two pills to take an hour before the appointment on an empty stomach and it knocks me out for the visit. Since Craig was gone ---- my wonderful, dependable, overall amazing sister Maggey stepped in for Erin-Doctor Visit Duty. She came to work at about 3 and sat and helped me out with some things for a 5k that I am planning (more on this later) and even took a big tub to work on while she was waiting. We went by a vendor to pick up some DVD's that I had duplicated and the meds started to kick in. Maggey took over driving and we headed to the dentist. Thank god for the GPS because I don't think I could have found my house at that point! In fact -- I made her stop at a fruit stand in Webster Groves and buy apples, grapes and kiwi (I take it as a good sign that my subconscious wants fruit) and didn't even remember this until Maggey told me today and saw the bag of fruit in the fridge myself. Sheesh

Into the dentist where they were not able to finish one of the root canals because the infection in that tooth was still too bad to go forward with the procedure (same problem last time I was in). They put the crown on the other and we headed to Walgreens to get my painkiller prescription filled --- and buy Easter Candy because apparently I needed that as well (now that sounds more like me!). Maggey must have handled me well because we got back in the car and went to get mashed potatoes. Unfortunately the permanent crown came out right away!!!!!!!! I woke up all comfy and tucked in. What a great sissy!!! It is so nice to have such great people that you can rely on. PS - If you got a drugged - Erin phone call.... sorry!! And Maggey -- I will just forget the part about you texting photos of me splayed out asleep in the waiting room of the dentist office......

I was able to call the dentist this morning and from what I could tell them over the phone it sounds like it will need a bridge now. So now I have to work in another regular dentist appointment so they can look at it and come up with a treatment plan. AND I still have to go back to finish the other root canal. It never ends. Apparently I love doctor/dentist appointments.

It will be nice when the day comes that a trip to the dentist only involves cleaning or a simple cavity fill. Or a trip to the doctor will only be to regulate my thyroid or whatever other follow up has to happen after my surgery. Bring it on!

But for now there is a lot to be thankful for: a job that is flexible, coworkers that are understanding and VERY supportive, an amazing family and an eye on the prize.

Maggey and her boys (Tommy, Colin, Jrue and the neighbor boys)

Sunday, March 29, 2009

Adversity and Football Movies

Craig and I had the RARE opportunity to have the morning and afternoon (lunch with my family in between) to ourselves... we snuggled and watched a movie! With not a kid around to make us stop! We had rented "The Express" - which turned out to be a great football movie about the first African American football layer to win the Heisman. Great Flick. See it if you can.

I have a running joke - all good movies include three elements.
  1. A "Coach" or authority figure is overthrown - and the team wins (or individual)

  2. Someone overcomes adversity of some kind

  3. The guy gets the girl or the girl gets the guy

I love this because of #2. Adversity is described by the American dictionary as: NOUN: 1. A state of hardship or affliction; misfortune. We all face some type of adversity - daily, weekly - minute to minute. Watching normal humans look this kind of challenge in the eye and succeed --- now THAT is inspiring.

I searched for quotes (I am a quote junkie) on adversity and found one that spoke to me today:

"Nothing is more desirable than to be released from an affliction, but nothing is more frightening than to be divested of a crutch." - James Baldwin

I was on the way to a Rugby match one weekend -- years ago and long before I really thought there was something wrong with me that a lot of time in the gym couldn't fix --- and we were all talking about weight issues -- I was by far the heaviest girl in the car (and I believe on our team) -- and kept saying something to the effect of "God it would be great to lose this weight and be done with it." One of the girls (nicknamed Slim if that helps you get a mental picture of her 5 foot nothing 100 and nothing frame against my 5 foot 7 and I am not saying how much physique) looked at me and said ---- "Erin, what would be bad about you losing the weight?" That sure shut me up. NOTHING. In fact -- I believe EVERYTHING in my life would be made better by a healthier, thinner me. And believe me -- I have great self esteem -- I love me. In fact -- I see photos of myself and it is so NOT what I see when I look in the mirror. I kind of wonder what is wrong with our darn camera sometimes...

I wonder what I will be without the crutch of my weight/health issues/Cushing's Disease - I wonder what I will do when I can go to the gym - I can work out for hours like I did in High School. I wonder what it will be like to have an event/wedding/girls night out coming up and not put on a hoody because there is just nothing that fits. I wonder what it will be like to plan things and be 99% sure that I will not be sick or tired or sick and tired of being sick and tired. I wonder what it will be like to be there for my husband like he is for me.

I CAN'T WAIT TO FIND OUT. I hope that I am not so used to the crutch that I won't rise to the occasion and become the "me that I want to be."

Saturday, March 28, 2009

Day One in Blogsville - What is Cushing's Disease?

Here we go!! I have joined the ranks of the online bloggers... who knew? For those of you who know me well -- I have always been outgoing and am not shy about sharing.... but things going on in this season of my life have made me stubborn (more than usual), have taken all control out of my hands and have brought me to the realization that life really is a constant journey. Nothing seems to stay the same or be predictable..... and lately I struggle with this concept. I struggle with how to let everyone know what is going on without sounding like a 95 year old women constantly complaining about a hip replacement. I am here to deal with the day to day in a healthy (and positive) way -- and to share what is going on with all of you. Craig (my amazing husband) has offered to keep this up to date when I cannot after my surgery.

I hope that someone working through their diagnosis finds this blog useful -- like I have found comfort in the information all over the web that others took the time to share.

What is Cushing's Disease?

I was recently diagnosed with something called Cushing's disease. It is an extremely rare disease (or orphan disease - defined by the National Institute for Health's Office of Rare Disease Research as occurring in under 200,000 affected individuals in the United States). Leave it to me - I like to be unique) Simply: I have a small benign tumor on the left side of my pituitary gland that is causing the pituitary to constantly release an excessive amount of ACTH. The overabundant amount of ACTH then signals my adrenal glands to over produce Cortisol. This results in Hypercortisolism, basically the same reaction that your body has when you are in a sudden seriously stressful situation (skydiving, a car crash..) commonly known as "fight or flight." Blood sugar levels are increased, blood pressure is increased, and the body is signaled to suppress it's immune system. My body is in this condition 24/7. Great when your body needs to kick into gear to deal with that sudden seriously stressful situation. Not great when you are trying to sleep.

Broken down Barney-style: It is like I have been taking WAY TOO MUCH prednisone or steroid for a VERY long time (ten years is the doctors best guess) and my body is angry about it. If you or anyone you know has ever had to go on steroids to treat anything - you are aware of the short term symptoms: irritability, increased hunger, difficulty sleeping, weight gain, water retention, and it is pretty easy to get sick from a bacterial infection.

Normal doses of Cortisol - in the steroid family glucochorticoids - (or the chemical reproduction: hydrocortisone) do great things for your body: reduces inflammation, makes sure needed sodium that your body creates is not lost, helps the liver remove toxins. In high doses these "side effects" turn problematic, and eventually are fatal.

Cushing's Disease has several "hallmark" symptoms: unexplained weight gain in the upper body with increased fat around the neck and face (moon face); a hump at the nape of the neck (buffalo hump); facial flushing/plethora; muscle wasting in the arms and legs; purplish striae (stretch marks) on the abdomen, thighs, buttocks, arms and breasts; poor wound healing and bruising; severe fatigue; depression, anxiety disorders and emotional lability; cognitive difficulties; sleep disorders due to abnormally high nighttime cortisol production; high blood pressure and high blood sugar/diabetes; edema; vision problems; premature osteoporosis; and, in women, signs of hyperandrogenism such as menstrual irregularities, insulin resistance, infertility, hirsutism, male-patterned balding and steroid-induced acne.

Luckily I have gotten away with not having acne, facial hair and have plenty of hair on my head. In fact - I would like to know how I can donate some, ha! :) I don't believe I have depression of any kind and am generally free of anxiety (until lately).

My list of "symptoms" that can be traced back to Cushing's Disease are amazing. For starters - those of you that knew me in high school remember my pretty sudden weight gain at the end of senior year and into the first year of college. I have spent the last ten years of my life in and out of the doctors office dealing with stress fractures; chronic mono; sinus infections; strep; chest infections; serious dental issues (almost all of my teeth are root canalled); poison ivy that lasts forever; bug bites that fester and wont go away; skin problems that spread and scar; difficulty sleeping (a sleep test at Wash U concluded that I wake up between 17 and 70 times per hour -- leaving me with very little REM sleep); constant urination; insulin resistance; lack of periods; 2 instances of MRSA Staph infection; intolerance to heat or cold; seriously high blood pressure.... on and on.

For ten years doctors have been treating my symptoms. And saying that they are unrelated.

It is a relief to know that there is a CAUSE for all of this. And it is a huge relief to know that there is also a CURE for all of this.

I have an amazing team of specialists at Barnes Jewish Hospital here in St. Louis who have decided the course of treatment will be a form of brain surgery done through the nose. An ENT (ear, nose and throat) Surgeon will go in, drill through some bone and get to where the pituitary gland is located at the base of the brain. My Neurosurgeon will then take over, "bread slice" my pituitary gland so that he can visualize all areas, remove the tumor and any other cells that look problematic, plug the layer that protects the brain and keeps all of the CSF (brain/spinal fluid) in. More on all of this later -- but this surgery is happening April 27th. 60 - 80% of the time one surgery is a cure. If it doesn't work (and there are an uncomfortable number of variables) - a second surgery, gamma knife radiation, medication and finally removal of both adrenal glands occur. I have had the opportunity to speak with many women and one man who have been through treatment and results are all over the board..... the majority being "first times a charm."
I am sticking with surgery #1 being a cure and April 27th being the first day of the rest of my life.