Posts Tagged ‘Graves Disease’

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.

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Praying for Endometriosis

I’m praying for Endometriosis. When My OBGYN told me I needed a surgical procedure, I lit up like a kid on Christmas. She and I laughed as we went over my (comically long) pre-op medical history. I called my husband from the car and he was happy to get the good news. I hung up the phone and realized how ridiculous this would sound to anyone outside of my little circle.

When you have undefinable pain, caused by a controversial disease, most of your Doctor visits involve a wild goose chase. Typically the Doc has a new theory, often based on a weird symptom that you’ve discovered. The second appointment is testing: CT scans, MRIs, tubes in places you’d rather they not be. (I once had a tube through my nose, down my throat and into my belly for 36 hours. The best part was that you could not swallow when they placed the tube. Right.) The third appointment is when the Doc tells you the tests show nothing conclusive. Back to the drawing board, tears in the car, “maybe I’m crazy, but that seems unlikely, as those psych tests were also negative.” It is wrenching and you find yourself praying for very weird things, like endometriosis.

Please don’t get me wrong. Endometriosis is a painful disease and I do not envy anyone who has it. I just want something with a name, something with a researched plan of action and I prefer it to be non-life threatening. So it looks like I will be the most positive person in my hospital this week. Please put me in your wishes, and please pray for Endometriosis.

Nativity

I highly recommend baby cheek therapy (followed closely by baby head rehab) for those suffering in any sort of way. Warning, there are side effects: you may become addicted to the sweet, sweet smell and if said baby smiles or giggles, you will lose all ambition to do anything but to continue kissing her warm skin. This prescription works well in tandem with one of those super soft giraffe baby blankets.

I realize that we have blown past even the Epiphany, but my tree is still up (cause it makes me happy) and my daughter is still listening to her Christmas music at bedtime (cause it makes her happy), so figure it isn’t too late to talk nativity for a moment. We went to church on Christmas Eve. My family is Unitarian Universalist, which makes this holiday a little less traditional. However, this year our minister’s sermon painted an unforgettable picture of the manger. It filled the senses with the smell of sweet hay, the breath of warm sheep, the glow of the stars and the sound of a newborn suckling, wrapped in his mother’s arms. The conclusion being that no matter how you feel about the Christmas story or Jesus himself, there is one moment of undeniable hope.  When that young mother looks down at her infant and, like all moms and dads, she sees in his face them most beautiful creature she has ever seen. Suddenly the nativity story was not about the birth of a king, it was my story.

There are many times when I would do almost anything to come home to a quiet house, to lie down on the couch and let my pain melt away. But, my girls bring the hope into my life. I feel extremely blessed to have them pulling me out of my pain and holding my hand as we venture into life. Because there just isn’t enough time to be lying around when there is play dough, dirt, swimming, dancing and dolls to be fed. Mary and I have an understanding, our babies are saviors of one kind or another and our job, as their mother, is the holiest of work.

Happy New Year everyone.

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.

Private War

I’m not going to get into the hairy details of thyroid treatment. Let’s just say its a bitch and I am grateful to be on the other, well-balanced side of an unbearable year. I regained my hair, some assemblance of a metabolism and my filter, the one that keeps me from yelling obscenities at my boss. If you haven’t had the experience of losing one or all of these things, you haven’t really lived.

The past 5 years have taught me a serious respect for the private wars people are waging everyday.  No longer does the culture stipulate hot casserole and free childcare for sick friends. A quick phone call is more than most of us can cram into our own demanding days. And, if your particular battle is a long one, with wide valleys between the moments of hope, you begin to outlast even the most strident of supporters.

I am blessed with a spouse who jumps in and climbs every mountain with me.  He shares the weigh of this pain with endless endurance. A good friend says people are given the children they need, and in my case I am certain this is true. My daughter brings a compassion and sweetness to my life that I cannot imagine being without. In the midst of this physical pain, these are the things that have kept me reaching for tomorrow with a sense of peace and anticipation. Life owes me none of this and I am grateful everyday.

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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