Back to work blues

Back to work in the morning following a sunny weekend spent mostly on the road heading to, then from, my parent’s new house in the country. Chatting with my mother, she told me about a first cousin (who I haven’t seen since childhood) who was also diagnosed with Graves some years ago and she opted not to follow up with any treatment. Nothing at all. I should add she’s also Schizophrenic so I imagine Graves doesn’t seem that big a deal to her. She’s also living in a small redneck village with limited professional medical resources let alone specialists near by. I hope she doesn’t regret her choice later. Tomorrow I’m going for a blood test which will see if the medication is doing anything so far and I’m going to try to convince my sister to go get her blood tested too.

I’m taking an oath here and now not to get too stressed this week…lots of politics and intrigue at the new job…but I am going to try and stay serene and rise above. Good freakin’ luck to me!

Does dog walking pay the mortgage?

I work in a pretty high stress environment, responsible for spending millions of dollars of someone elses money. It’s a young workforce and I’m already on the older end. I earn a good salary but I sometimes find myself daydreaming about doing other, less stressful things like dog walking & cat sitting, or running a kitchenware shop (I worked in one for a while and loved it!). The endocrinologist told me that some of her patients had gone into spontaneous remission following a change of career. Yesterday was particularly stressful and I ended up in tears in front of my boss. I’m not sure which of us was more shocked! Got my period today and perhaps a sign the drugs are working…they are as heavy and as painful as they were years ago (i.e. very heavy and very painful). I treated the pain with a chunky sized bar of chocolate with hazelnuts and I DO feel better ;-> . Walked the 20 minutes from the train to work today and yesterday…it’s a start!

Two Weeks Into Treatment

So, after the Ultrasound and the Nuclear scan and the consultation with the Endocronologist (“typical Graves pattern…and you’re VERY symptomatic”), here I am taking 10mg of Neomercazole (2 x 5mg) per day. I have a blood test booked in for the end of next week, which will be followed by a phone consult with the specialist who will let me know if the meds need to go up or down. My instinct is telling me I need more. Over the past two weeks I’ve noticed that the best way to get ‘coverage’ from symptoms is to take Tablet # 1 at about 9.30am, and Tablet #2 at about 4pm. Otherwise I seem to be off on the fast heart beat and sore joints track by the middle of the afternoon and of course this make me cranky and tired at work. I started a new job just as this issue was beginning to take shape…and I’ve been overdoing the hours and the stress and I know it’s not helping but I’m trying not to let that be the first impression people at my new job have of me…”the girl with the health ‘issues’”. They’re a big drinking crowd and I already know I’m a fool to try and keep up…not helping me at all. Trying to cut back on alcohol is hard for a social person in a job that requires a lot of socialising! And do I really have to let go of my one good coffee per day?

I guess I’m lucky in that I don’t have some of the ‘worst’ symptoms of Graves. My thryoid is nodular and somewhat enlarged but I don’t have a noticeable goiter. My eyes tend to be sore and often red but they are not bulging. I’ve certainly had problems with hot, lumpy skin rashes, especially at night and embarrassingly, mostly on my arse! Lucky then that I split up with my partner late last year so there is no one to show my lumpy red arse to anyway (except my cat and she is actively disinterested!).

Must remind myself to ask the doctor about exercising. I feel like a breathless lump and want to start working with a personal trainer. Maybe some walking and some light weights would be ok? If I write it here then maybe I’ll feel committed to walking to the train station tomorrow morning (a brisk 25 minutes).

On the plus side, I actually did get off the couch a lot this weekend…cleared out a whole bunch of stuff for the council clear up…did the errands required of me by my furry mistress (food from the vet, special litter from the pet store)…and bought some new furniture in anticipation of my move in 6 weeks. All things on my ‘to do’ list for weeks, now crossed off! Now about to tackle my wardrobe…but don’t worry I’ll leave a breadcrumb trail!

R xo

Should I feel special?

US studies suggest that Graves Disease affects just 0.25% of the population. So thats 99.75% of the population then who have no idea what I’m on about. I’ve certainly found that most people give me a blank stare if I mention it and sympathy is fairly thin on the ground. And not that I’m seeking it but it would be something of a relevation if someone actually expressed concern or asked how I was feeling. I come from a family with a few genetic quirks so in actuality this disease is ‘not that big a deal’ in the context of some of the other things my family has withstood. But still….

In the beginning…

I was formally diagnosed with Graves Disease on the 30th of April 2008. It was a shocker of a week as just the day before we’d buried my great aunt who had finally been released from the prison of dementia at the age of 96. Certainly, throughout the pathway to diagnosis there were more than a few moments when I thought perhaps I really had lost my own mind.

I’d been symptomatic for some time but despite numerous trips to the doctor had not been diagnosed with anything in particular. She’d ordered a holter monitor test for my heart palpitations…’no conclusion’. For my ‘panic attacks and anxiety’ she prescribed anti-anxiety meds and suggested I see a therapist. For my chronic insomnia, she recommended a warm bath late at night (not being keen to prescribe sleeping meds). For my ongoing joint and muscle pain she referred me to a sports physician who recommended pilates and prescribed Voltaren. We discussed having a tyhroid test but as my TSH levels had been on the high side of good during a routine blood test 18 months prior, she contended that any problem with the thryoid was unlikely. Given how often I was presenting at her surgery with random, seemingly unconnected ailments, I was pretty sure there was by now a note attached to my file in big red letters, “Warning: hypochondriac!”. In fact, if my mother had not needed emergency medical intervention earlier this year, I probably would still be complaining of being unwell, and no closer to knowing why.

Long story short…she was found to have a massively enlarged thryoid; a goiter lying retro-sternal, pushing on her trachea and obstructing her breathing. It was still working but she was well on her way to hypothyroid…so it had to come out! Soon after, I learned that most of the women on my mother’s side of the family had also had thryoid issues.

A week or so later, I was back at the doctor’s office and this time I requested a full work up of my thryoid pathology. Blood was taken, blood work up came back. A few days later I came out of a meeting and began checking my phone messages and sure enough, there was a call from my GP. “There’s good and bad news” her recorded voice said. “The good news is, you’re not a hypochondriac. The bad news is, there’s definitely some problems with the results and most likely it’s something called Graves Disease…but we need to do more tests and I’ve made an appointment for you to have an ultrasound and go see an endocrinologist.” And then I went back into meetings and tried not to think about the implications of her message, not knowing what Graves Disease was, and hoping it was that and not anything worse.