Friday, June 18, 2010

More on Cushing's Disorder

I've wondered a long time about what was going on with Bailey.... never in a million years did I think to ask about Cushing's Disorder....but after researching extensively....this diagnoses fits.

She's gained a remarkable amount of weight, even though she's active. She has the classic "buffalo hump" (That's a awful way to describe something on a human being), the upper body weight, long/thin legs and arms.

But Cushing's Disorder brings with it far more than physical affects. When we started putting this puzzle together, the pieces fit perfectly.

The exhaustion and the mood swings have been something we just attributed to hormones, or being a "teenager". But now we know that there is something much bigger going on.

Bailey will undergo a very easy test that measures the cortisol levels in her body. When someone has Cushing's, it is typically caused by a tumor or tumors on the pituitary gland or adrenal glands. This tumor causes the body to produce large amounts of ACTH (adrenocorticotropin). This excess ACTH causes the body to produce extra cortisol.

Cortisol performs vital tasks in the body. Cortisol helps:
  • Maintain blood pressure and cardiovascular function
  • Reduce the immune system's inflammatory response
  • Balance the effects of insulin in breaking down sugar for energy
  • Regulate the metabolism of proteins, carbohydrates, and fats
  • Assist the body as it responds to stress.
When the amount of cortisol in the blood is adequate, the hypothalamus and pituitary release less CRH and ACTH. This ensures that the amount of cortisol released by the adrenal glands is precisely balanced to meet the body's daily needs. However, if something goes wrong with the adrenals (or with their regulating switches in the pituitary gland or the hypothalamus) the level of cortisol produced may be more or less than what the body needs.
When those levels are too high, the symptoms of Cushings begin to present themselves.

  • Extreme weight gain, especially around the midsection and upper back
  • Reddish-blue streaks on the skin
  • Excess hair growth
  • Growth retardation
  • Missed periods in teenage girls
  • High blood pressure
  • Acne
  • Tiredness and weakness
  • Either very early or late puberty.

  • Since Bailey just had TWO MRI's, that showed no pituitary tumor, the Drs. are thinking that the tumors could be on her adrenal glands. Further testing and possible surgery is in store for Bailey, after our move to Denver.

    This move has been particularly stressful for me....there is so much going on medically, with the kids, that I can hardly keep up. (Not to mention my own medical needs)

    Packing is the easy part...keeping it packed and organized is a whole different story. The kids miss their "stuff"....the transition is hard for them.

    I am ready to be done with this whole moving thing....I want to be in a place of stability. I want to feel secure that the kids will have their needs met...this includes basic things like medical insurance. It blows my mind that medical coverage is either 1) too expensive to have or 2) Not available because you happen to make a few dollars to much.

    What kind of country do we live in, when those in prison, receive better health care, than the working American? I am livid, and hurt that the good people of this world, suffer endlessly.

    All I can do is continue to fight. Continue to stand up and push back...and most of all, continue to THRIVE!!

    Thursday, June 17, 2010

    Thursday Vent

    I talked with 2 drs, since our appointment yesterday. I read through Dr Giddings medical records of Bailey....and was shocked when I read a part describing Bailey as having Cushings Disorder. This was news to me, and I was upset that I had to read in in some notes the Dr gave me.

    After doing some research about this disorder, I found it to fit Bailey exactly. My talks with the doctors have also given us a tentative diagnoses. We will get blood and further testing done next week, to confirm.

    Honestly, I am feeling extremely overwhelmed. The house is a mess with boxes, and my mind is a mess with worry....and I can't do a darn thing about either of those. (Telling me to worry less, is like telling a fish not to swim)

    On a good note...I am now down 22 pounds after almost a month on low least I have that going for me--eh?

    I can't wait to move....I just want it over and done with!

    As for the Neurofibromatosis, brain surgery, urologist, ophthalmologist, blood tests and all the other medical stuff....It will just have to be on hold, until after the move.

    Tuesday, June 15, 2010

    Turn it Around Tuesday

    We need some prayers for Bailey. One of the drs from the team working with us called and is concerned about the tumor. It has grown since the March 2010 MRI....and this DR wanted to be sure we are "following up with surgery".

    We meet with Dr. Giddings again tomorrow....and we will discuss the plan. He will refer Bailey to a team of Drs in Colorado.

    I find myself having a hard time "feeling". I don't know if this makes sense....It's almost like I haven't accepted the reality of this brain tumor.

    My last post was about accepting NF.....Sometimes I forget, that I must also accept everything that comes with it.....which is hard to do.

    I will update after our appnt with the Dr.....

    The packing of the house, the move, the insurance, the absent husband has me feeling overwhelmed.....It's hard to look onto a month from now....It scares and excites me....But for now I am just surviving.

    Monday, June 14, 2010

    Motivational? Monday.

    I'm not sure what's going on with me lately. My blogging has become less and less something I worry about. Perhaps that is a good thing, because I am focusing on other things that are important, but I honestly miss being able to write.

    I have been actually doing A LOT of talking about Neurofibromatosis lately....and THIS is a good thing! Three years ago, I would NEVER ever talk about NF...and most especially about how NF makes me feel!

    I feel freer than I ever have before in my life, and sometimes this feeling scares me. But mostly it makes me feel confident that I can handle whatever comes my way. I mean, if one can accept having a life-long progressive disorder, that can shift and transform your appearance, one can handle anything...right?

    I like to think of myself as standing on a mountaintop. The climb of a lifetime was steep and treacherous and I have many many deep wounds from this climb, but as I reached the top, the climb got easier, and I felt less lonesome.

    What I realized during my "climb" was that I was never alone, even though it felt like that.

    I know accepting NF is not an easy thing to do...heck it took me 33 yrs before I was really able to say, with any type of confidence that I had it. But it IS important that if you are living with NF, to accept it. It's only then, when you can begin to THRIVE.

    Wednesday, June 9, 2010

    Wow..What a Wednesday!

    We fought for this MRI, and after weeks of appeals, today Bailey finally got to have it.

    We checked in early, in hopes of getting in early (shhyyaaa right!) We ended up getting in as scheduled....and started the sedation soon after.

    Three hours later, the MRI was finished and we were able to leave. Bailey was still groggy from the medicine, so we went and got something to eat and raced to the middle school for the awards assembly.

    I found out last night, that Bailey was going to be awarded "something". We were worried that we weren't going to make it on time, but managed to catch the last 15 minutes.

    When we walked into the front doors of the school, some of the teachers told Bailey how happy they were, that she had made it.

    We sat in the bleachers and clapped through the "perfect attendance" and "high achievers"...Then three girls approached the front of the assembly, along with a teacher....Bailey was mentioned -- as was her brain tumor (Neurofibromatosis was also mentioned, but not actually said)

    These three girls talked about how special Bailey is to them and how they wanted to do something special for her. They fund raised and collected money to purchase Bailey a yearbook. As Bailey and I approached the front, the entire school cheered and screamed Bailey's name!

    They handed Bailey the yearbook and a handmade card.

    Hugs all around, while the students continued to cheer.

    The girls who presented the yearbook, had the entire 8th grade sign it and put in special messages. As we walked off I grabbed Bailey and hugged her. Flashbacks of my own experience flooded my mind.....MY 8th grade experience was horrible....and I smiled knowing that it was all going to be different for Bailey.

    Bailey is and will always be THRIVING with NF, because she has support, that is confidently holding her up, and pushing her forward. I am proud of her, and I know that this heartfelt gift will be something she will always remember!

    Wednesday, June 2, 2010

    Don't Touch Me!

    During the podcast, the topic of "touching" came up. I have to say that, THIS was the one topic I wish I would have opened up more with.

    I mean sure, everyone loves to be touched or hugged at some point in their lives. But with me it's opens up a very fearful road.

    I could probably talk on a podcast for an hour, all by myself, about what it's like, emotionally, living with a disorder that transforms your body, into a tumor-ridden "freak". I hate what Neurofibromatosis has done to me. I hate what's in store for my children.

    The very first time I was intimate with someone, NF was not a problem....the tumors were there, but I was the only one who could see them. I was very good at hiding...and very clever about not being seen intimately, when lights were on.

    I used to love to have my face caressed...but now have tumors growing making me pull away anytime someone even attempts to touch me there. My neck, shoulders and back used to love being massaged, but now, tumors fill those areas too.

    In my mind I am thinking, "How could ANYONE, possibly want to touch me?" I can barely stand it when I catch a glimpse of my back and tummy in the mirror, getting out of the shower....How could anyone be okay with this!?

    I AM Thriving in Spirit...But I still have a LONG way to go, to be THRIVING in body. I have a hard time dealing, when I see new tumors forming on my body. I often wonder what life will be like 10-20-30 years from now.

    All I can do however, is continue working on myself. Continue to THRIVE in my day....In my week....

    Actions follow Attitude, and I am determined to fight through my insecurities, and one day maybe beat them. But for now, I am fighting the fight...just like you.