Posts Tagged ‘Thyroid Disorder’

At Least it isn’t Cancer

Friend: How is all of your health stuff going, have they figured it out yet?Red 3D Cells

Me: I explain how I am chasing another diagnosis with new tests, trying to sound positive about the potential of having my pancreas removed, or some other super-fun procedure.

Friend: Well, at least it isn’t cancer!

How does one respond to that? Yes, cancer is a monster of a disease that can ultimately kill you. No, I do not wish chemo on anyone. And, yes, the people I know who have fought or are fighting that demon are super-heroes in my eyes. I realize that this friend is trying to make me (or them-self) feel better about my completely depressing health situation; it comes from a good place. But I have no idea how to respond.

If I say, “Yes! Cancer would really suck!” we can all just move the conversation along to what we are doing for the holidays, or something equally pleasant. And that is what I usually do, because I am not a masochist and I’d like to be invited to lunch again. But this quietly denies the power of my own disease in some way, the reality of my life. If it isn’t cancer, it really can’t be that grim, right?

There isn’t any purpose in playing compare the malady. Everyone is fighting his or her own great battle. But I would be lying if I said I haven’t considered whether or not I would trade my ailment for a cancer diagnosis, you can’t help it when people unfailingly reference it. Some days I do wish I could trade my near constant nausea and pain with a definitive chemo treatment. I wish I had an illness people had heard of, had a healthy respect for, because I am weary of trying to explain it in a way that fits our world’s short attention span. I face the fact that this thing might slay me everyday. Even worse, it might just suck every last bit of marrow from my miraculous life over the next 40 years. And, ironically, it often causes the big C.

I actually have very little interest in mulling over every gory detail at lunch. I want to laugh and talk about my kids. I deeply appreciate your concerned inquiries and it really is just enough that you asked, that you recognized the darkness for a moment. Please know, that simple act is enough, you don’t have say something to make me feel better. I can see, just by looking into your eyes, that you wish it were so.

Desperately seeking Cher

I’ve become a reoccurring Saturday Night Live character. And not a fun one like drunk sorority girl, someone more akin to Rachel Dratch’s Debbie Downer. The worst part is that I am aware of it – I’ve started to hate talking to myself. 

I’m sure you can relate on a different level. Imagine you have a nasty cold, one of those viruses that knocks you on your butt: you have no voice, your coughing endlessly, you can barely get your lungs to breathe. You want more than anything to be home, in your bed, with your mom serving you hot tea and hugs. BUT, you are at work, attempting to be productive (for whatever insane reason people go to work sick).  No matter what anyone says to you, it is really all about your flu. Sickness trumps everything and whining about it, receiving sympathy, helps you cope. Even if you manage to be productive, that bug is king until you are breathing easier.

It is the same for me, except it never freaking ends. So accept it and move on, right? Seven stages of grief and all, right? I have circled the wheel of grief so many times I should have a free ride punch card. This is the chronic illness bitch-slap: as soon as you accept it for what it is in your life, find a way to continue to be happy and productive, the disease changes the game. You get sicker, your meds quit working, your pain finds a way to invade yet another hour of the day. Pack you bags, you’ve been called up for another tour.

This is all to say that I am trying. I know that I am an obsessed, distracted and annoying friend. For my birthday last week, a soul sister posted pictures of the two of us in college. A time when we not only loved Clueless, we  were Cher’s alter ego, short skirts, doe eyes and all.  I feel like this illness has taken my Cher to the liquor store parking lot and kicked her ass. I look desperately forward to the day she gets back-up on her patent leather heels and walks, smiling, into the sunset…or the mall.

Done

Time to crack the champagne,  douse me in Gatoraid, send the family to Disney World! I have completed the triathlon of narcotic dumping. I’m still getting up in the morning, and  I have every reason to, the latest scan of this bug-a-boo is looking healthy and feisty, Graves Disease be damned! It may not be a trip to Cinderella’s castle, but a celebration is certainly in order.

The last round of withdrawal has been especially excruciating; after 4 months of leg crawling, sleep deprivation and migraines, I’m emotionally over it.  In the end, the sleep aids and quality time staring vacantly at House Hunters from my permanent perch on the couch are getting me through, but it isn’t pretty.

Without my regular doses of medication, the pain can be pretty unbearable, reminding me why I was taking them in the first place. When I’m truly stuck in a physically difficult position, like a long meeting or rush hour traffic, I’ve decided that a half dose is still an option. Trying to hold on to my blood pressure and sanity, while keeping this baby as safe as I can. Which is really just parenthood in general, no?

At 30 weeks (30 WEEKS!!) I am beyond impatient for a streak in which I feel well enough to come home from the office and hit the park with my daughter, prep the baby room or bake cookies. It is a difficult thing for motivated people to sit on their butts making plans, without the ability to actually get things done; as the world moves on, pulling you forward in fits and starts, you feel lazy. It is ridiculous, but you still feel it. I’ve been stranded on my couch for too long, its time to get my world ready for this little girl.

Champion

My OB cursed me. After a clean and clear glucose test (thank God, this mamma needs her M&Ms) she said, “You’re making this look too easy!” My husband wasn’t there to share the war stories from home, so I accepted this victory and walked out of that office a little lighter, despite my ever growing belly.

In true form, I got about 2 hours of celebration before my Endocrinologist sent over crap news. Seems that most people treated for Graves disease  see a depletion in the antibody in their system throughout the following years. This person did not, my last test shows double the expected amount. Graves, know for its effects on the thyroid, is actually an autoimmune disorder. I’m learning now that after the RAI thyroid treatment, the disease remains quietly in your body for a lifetime. It’s potentially not so silent for my baby. It can threaten her heart, growth, thyroid and can cause preterm labor. Those couple of carefree hours felt so damn good.

After the necessary freak-out period (thanks to my friends who told me to get off Google and breath) I booked another level 2 scan with my Perinatologist and a massage (more thanks to the most fabulous mom group in the world).  There is nothing to be done but to wait and watch, two things I detest doing.  And, reducing stress, which can reduce the antibodies floating around. Can one be vigilant about relaxation?

The name we have unwittingly chosen for our daughter means Champion – noun, a person who has defeated all opponents. During this last week her kicks have become so strong that I double over, gasping and laughing in the same m0ment.  Mom’s protect their little girls with an unparallelled fierceness. We learn, sometimes reluctantly, to trust our daughter’s ability to care for themselves over time and after years of careful instruction. It is a lesson I am learning far earlier than I ever expected to. I am trying to trust the Morse code of her little limbs, I can’t help but feel that this little champion is already sending the message that she’s got this one, so relax and send more M&Ms.

Avocado

My current state is over-running my existence, so this is where I am taking the leap to real time. In short, all the the Docs gave their enthusiastic “go for it”, I dumped the Fentanyl patch in late November and we took our first and only shot at baby-making in early December. This being clearly wanted to happen.

About 8 weeks in I had that terrifying spotting, a symptom that leaves you feeling like this whole thing may be a figment of your evil imagination. I begged and bothered the nurse line enough to get an early ultrasound, a new level of “crazy expecting mom” for me. We left the hospital with our first two pictures of the healthy baby – deemed bugaboo until birth by my husband and 5 year old.

Much of this pregnancy is like any other, the morning sickness has brought me to my knees and I am praying that it won’t extend a day beyond today. Working full time has had its challenges, I am holding onto my sick days like they are gold. The chronic pain stepped up a notch after the patch, but is still bearable with the help of the low-dose vicodin.  Having left the danger zone of the first trimester, I will begin weaning off of those pills next week. Feels like I’m climbing that first clicking hill of the roller coaster and the ride down will either thrill me or send me into a dark oblivion.

I have a pregnancy tracking app that delivers a little piece of inspiration to me everyday. My daughter especially loves the ones that associate the size of the baby to a piece of fruit, studying the pictures of lemons and apples  carefully. Yesterday she put her little hand on my belly and, squealing, felt the beginning kicks of our precious avocado, in that moment I felt no pain.

Pandora’s Box

I’ve been forced to accept many, many things in the last few years.  But I guess the one thing I never really accepted was the fact that I wouldn’t have a second child – that my daughter would not have a sibling. We began the long dig through the process of adoption and got far enough to realize we could not afford it. Years from now maybe, hopefully.

I found myself becoming a baby-stocker, offering to watch friend’s small ones more often than seemed sane. A day at the beach this summer with little Molly and her year-old cheeks drove me back to my computer. Maybe there is a way…my levels have been really good for two years…I am stronger than this pain. I googled five thousand related articles in 24 hours. Set appointments with three doctors, including a therapist to measure my level of insanity, terrified. Pandora’s box had been opened and truth be told, I was already breathing easier.

Throw another log on the fire.

I’m certain that some of this sounds pretty fun. I’m sure you enjoyed that precious  bottle of vicodin you got after your dental work. But there are nasty and sometimes unexpected side effects. Things a young mom does not find helpful.

An hour after my very first dose of neurontin, I had to tuck my daughter in for a very early nap because I could not stay upright long enough to keep her safe.  I have had patches that make it impossible to focus for more that 30 seconds on any given activity, what manager doesn’t love that? I require more sleep than any parent has a right to get. The scope of what people in chronic pain are suppose to live with, in order to have a relatively sane life, is ridiculous.

So when my hair started falling out and my legs cramped my body into submission at yoga, I thought nothing of it. When I woke up with my left eye bulging out of my face, I decided to google. Two days later I was diagnosed with  a severe case of Graves Disease and two weeks later my thyroid was rendered useless. I was told that I should not try to have another child, the levels of hormone in my body would not support good fetal development.

For me, having this daily pain feels like I am already doing my part, already above the line of general health. Its like a healthy person having a daily cold, or migraine. It seems that I should then get a pass on the flu, pink eye, thyroid disease. I was overwhelmed with this second log being throw on my fire. And truly mourning the loss of my future child – the one we had dreamed of and planned on, as certain as the rising of the sun.

The Littlest Rabbit

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