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physically deformed vs. unable to sustain life without synthetic drugs

Why should I have to choose?  This is my third flare up of Graves.  I wish I’d kept better records regarding the perceived size of my goiter, symptoms, levels, etc.  I seem to remember the size of the goiter DECREASING after a few months on anti-thyroid drugs.  I’ve been on methimazole (a.k.a. tapazole) for about 7 months so far during this flare up and I swear the f**king thing has gotten BIGGER!?!  Why should I have to choose between being physically deformed (with the added bonus of all the emotional baggage that carries) OR have surgery to remove a vital organ that makes a hormone so essential that without it, I’d slip into a coma and die in a matter of days?   …not to mention the common after effects of weight gain, depression, hair loss, fatigue, muscle pain, brain fog, short term memory loss, etc.

It’s enough to send me face first into my mattress, dampening it with an endless supply of tears on a daily basis.  Or.. it could send me into a rage like it did on Saturday.  I felt so powerless that every time I looked in the mirror, I was greeted with this big fat neck, and I went HOWLING mad.  I tried hitting my bed with a twisted up towel.  That made me angrier, so I tried hitting a chair.  No dice.  I threw some non-breakable things, I slammed some doors, I even slammed one so hard that I was temporarily trapped.  I was so angry at my body and myself for not being able to find a way out, strangled by this gland that I wanted to strangle it.  I knew it was reactive, but I didn’t know what to do with those feelings.  I felt so powerless to provide my body with the right environment for it to balance out that I sometimes feel that I may as well abuse it.  I can’t take back the years of cigarette smoking, the poor dietary choices, the poor sleep schedule that helped this damn gene express itself.  I feel utterly powerless, emotionally isolated with no stories of inspiration that I can ever achieve a lasting remission.  I watch all these assholes around me abuse their bodies while I do the best I can to take care of mine and here I sit, with this swollen gland in my neck, (previously anonymously) typing this blog that no one will read.

This swollen butterfly in my throat has slowly mutated my personality, just as its morphed my physical appearance.  It’s funny how 100 grams of tissue can change me inside and out.  Throw a scarf on and no one’s the wiser, right?  Wrong.  It’s absolutely crept into my identity and I’m no longer the person I was.  Any moment of happiness is quickly evaporated as I am reminded one way or another of this betrayal inside my body.  Aside from the arrhythmia, the hand tremors, the anxiety bordering on panic, it’s turned me into an insecure scaredy-cat with a frog in her throat.  I used to feel pretty, I was pretty..  Now instead of envying the would-be supermodel, I envy the neck of every woman with her hair up.  I’m consumed by it at work, when watching movies, even when surrounded by friends.  It’s NEVER not on my mind.  I feel like my life is over and in a way, it is.  My life as I once knew it is over.

Say I get this victim of an organ out of me and my profile looks normal.  Everything’s fixed?  If it were that easy, I would’ve had this sucker ripped out at first flare.  No, unfortunately it’s more complicated than a daytime drama.  First, the disease is autoimmune, affecting the thyroid, eyes and skin.  So what happens if the other two organs react to the autoimmune antibodies that cause the symptoms of this disease?  Do I get my eyes and skin removed?  The answer does not lie in killing this organ.  Beyond that, I fear all the stories I’ve read about regarding weight gain, hair loss, depression, fatigue, brain fog, memory loss, etc.  I’ve had a couple episodes of depression and there is NO WAY I could live with being a fat, tired, depressed woman, even with a normal looking neck.

What do I do?  Is there anyone out there who’s achieved remission?  Is there anyone who feels normal after a total thyroidectomy?  I’ve heard the horror stories, I’m seeking the success stories, whatever they may be.  If you have had any kind of medical success when the odds seemed stacked against you, I want to hear it.  Leave me your story in a comment.  I sure could use some hope.

 
1 Comment

Posted by on September 27, 2010 in Graves' Disease

 

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