Wednesday, August 18, 2010

My funeral

I died and nobody told me.

I sat looking at pictures of me from before I got sick. I don't look like me anymore. I think differently too. I've gone through so much in the last few years. I really can't remember what it was like before being sick.

I saw a picture of me helping Halle open gifts at her first birthday party. You know that part of your neck up front you can see that sticks out on each side of the trachea? I used to be able to see that. I tried really hard while standing in front of a mirror to make that happen again. I couldn't even force it. No matter what I did, my neck just remained this pudgy thing with a round head on top.

I had braces and no longer have the gap in my front teeth like I used to.

I graduated from college and have had so many great opportunities laid out before me.

But the reality is: I died and nobody told me. There was no funeral and nobody sent flowers or set up one of those funds at the bank to give to my favorite charity in lieu of the flowers. I didn't see any kind of obituary and as far as I know, I wasn't buried. I just died and then disappeared, very slowly over a long period of time.

I kind of think of it like being in a coma, unable to recognize what's happening to you. Right now, this very minute while I write this with tears blurring my view of the screen, I am remembering back to being in the hospital after the first surgery and seeing myself walking through the halls in a circle, pushing a tank of oxygen and my heart monitor on wheels with my ass hanging out the back of my ugly blue gown. It's been like a dream, one that I'm not convinced I've awakened from yet.

I died. I just know I did. How else can this be happening?


  1. OMG! There IS hope! I'm 14 years old and have had every single one of these symptoms since I was a little girl. The large, round, puffy face; the stretch marks on my stomach, arms, and thighs;a lot of hair all over my body; the hump on the back of my neck; a lot of weight gain; EVERYTHING!!!!! Everyone says that I'm just fat and lazy and I need to work out, and I try to, but ITS NOT WORKING!!! I'm embarrased to go anywhere, I have grown my hair long so I can hide my nech and shoulders, I wear the baggiest clothing ever because I look like I'm pregnant or something, and I'm afraid to make friends because they will find out about the stretch marks and the hump even more than they already do. It's really hard to change for gym class in the locker rooms without anyone stopping and staring, pointing and laughing and thowing things at me, staring rumors that I'm pregnant or other really stupid high school stuff. There are tears streaking down my puffy face and I'm starting to think that there might be hope for me! Is there? Can you have this alien ruling your body, this probable Cushing's Syndrome when your a teenager or even younger? Please help me! It seems like NO ONE understands - doctors just say I'm fat and need to accept it, but I won't. I'm not lazy, and there is something wrong with me. I know it. I mean, I have looked at family albums and I can see what I looked like at 7 years old, and ITS NOT NORMAL! How many 7 year olds have a giant stomach, even though they are the most active kid you will ever find? How many 7 year olds have stretch marks that are like 3 years old? How many 7 year olds have a giant, puffy face and neck? How many? Because, if this is normal, PLEASE someone tell me! I'm starting to think that no one can help me, and I am destined to be this way forever.

    Sorry for my ranting - this is a painful situation for me.

  2. Have you seen a doctor for this or anything else? I would recommend seeing an endocrinologist. They know what tests to do. This is a serious illness and not taken care of appropriately can cause lasting damage.

    Let me know what I can do to help you.

  3. Not really, except for my regular doctor. I'm not sure what an endocrinologist is to tell you the truth. It really freaks me out though because I don't know what's going on with me. I've googled everything that I can think of and nothing else matched me like Cushing's does. Can a teenager have Cushing's?

  4. hey nbcb, hang in there. remember doctors don't always know about all health problems, so keep looking for help until you find it. google results for cushing's syndrome definitely turn up pictures of kids. make lists of symptoms from more than one source (merck manual, mayo clinic, wikipedia, the library encyclopedia) and check off the ones that apply to you and show them to your doctor. if that doctor doesn't help you, try to see another one, or a school nurse, or write to doctors for advice and explain your symptoms and situation. it can feel scary to get things treated, too, but it's great that you may be finding out what's going on with your health.

  5. Oh, my gosh! This is me.
    Did I write this?

  6. I know Angela! That's what I think, too. Its really scary to me, but yet somehow I feel a little better knowing I'm not going crazy! I wish that I had a digital camera so that I could take pictures of me and you could see what I'm dealing with here. I've noticed that I am getting even more stretch marks in weird places, like on my shoulders and upper back, near my neck, and down my arms. There's even more stretch marks on my stomach, too. I don't think 10 pounds of weight gain is normal in 5 weeks, is it? Cause I haven't changed anything. Is that normal? It looks like my skin is stretching itself to its limit.

    It kinda scares me too because my doctor never heard of Cushings. How am I supposed to tell him my concerns? We've went through this before, he just says that I'm not exercising enough. My next doctor's appointment isn't until next summer, and I can't really go to the doctor unless I'm sick or if I have to go.

    I'm not sure if I want to know what's going on with me, because I'm afraid of doctors, hospitals, and surgery! I'm just so frusterated...