Need to keep moving forward

I’m working from home today.  Or trying to.  The weather is grey and so is my mood.  I don’t really give a flying fick about my looming deadlines.  It’s just occurred to me that I’ve forgotten (again) to take my neomercazole so I’ll do that now.  Still on 2 x 5mg per day.  I’ve got a little bit of pain in my hands and I can feel the racing pulse in my carotid as I sit here, which might be real or might be psychosomatic at this point.  I can’t really tell anymore.  I’m due for a blood test towards the end of next week and this time the focus will be on those pesky little antibodies.  Hopefully, they are being kept at bay.

Despite my new found energy (today doesn’t count) and my exercise regimen and watching my nutrition, I haven’t lost any weight at all.  I feel like a big lumpy lump.  My arms and thighs are especially fleshy which I guess is because these are large muscles that have lost the most tone.  I’m the Pillsbury Dough Girl.  I also feel excessively hormonal…bloated, twingy pain, CRANKY.  Lucky I am able to avoid other humans when I have to.

Now I know things aren’t has bad for me as for many other people (especially people close to me) but I have to let the self pity and whining out here…no one wants to see that or hear that in the real (non cyber) world.  I would open a bottle of wine for myself if the neomercazole hadn’t taken away that pleasure ( I feel ‘off’ long before I feel drunk).  People tell me to meditate but I have tried a millions times and I CANNOT.  It just makes me more, not less stressed because my mind doesn’t work that way.  I tried anti-depressants for a while but they gave me excruciating headaches.  I’d love to be one of those super laid back, take it as it comes types…but then I wouldn’t fit the Graves profile.

I suppose Graves is a journey of up and down days.  This is one of the down days.  I can’t really share how I’m feeling with anyone at the moment…my family has got bigger problems right now!  And I’ve deliberately kept my condition a secret from my new workplace…don’t want to be (again) the ‘new girl with the issues’.

Ho bloody hum, right?
Ok…back to the real world.

How did I get Graves?

In some respects, this is a dumbass question.  After all, it doesn’t change anything.  It’s here – I’ve got it…for life.

Most of the literature talks about three separate theories.  Because no one really knows.  They can be quite complex to understand but in summary…

Theory one.  It’s genetic…a silent marker sits on you DNA waiting to be activated at a time of it’s choosing.  And if there is a history of auto-immune disease in your family, you have a greater chance of getting an auto-immune disease (and not necessarily the same one your family member has).

Theory two.  Some kind of cell reaction occurs as a result of an infection, setting off the chain of events that manifests as Graves disease.

Theory three.  An extremely stressful event leads to a severe physiological reaction i.e. Graves.

Based on these three simplistic interpretations of the possible causes (and there may be many more), well I had no chance at all.

Genetics.  My mother, grandmother and two aunts have all had complete thyroidectomies.  None were diagnosed with Graves or any other auto-immune disease but possibly this is due to lack of appropriate medical attention early in the piece (not uncommon for people living a poor, rural life).  A first cousin also on that side was diagnosed with Graves nearly the same time as me.  On the other side of the family, my father was diagnosed with the auto-immune disease, sarcoidosis, 15+ years ago.

An infection.  About 4 years ago, I developed a seriously bad case of pharyngitis.  Thats tonsilitis, without the tonsils (snipped out when I was 5).  The infection was so bad, I had to take two full courses of antibiotics (something I would normally do anything to avoid) and moaned through two painful weeks spent in bed.  I’d never been so sick before, and never since.  More than 12 months later I was having trouble with sore throats and was constantly losing my voice.  I went to see an ENT specialist who told me my vocal chords were still inflamed and my throat muscles were overcompensating, causing the voice loss.  It was a shock for someone who had years of vocal training behind them (I was a vocal major in a music degree) to end up in speech therapy.

Extreme stress.  About three years ago, and after 13 years of remission, my sister suffered a cancer relapse.  After ten years, Doctors consider you ‘cured’ from cancer and so we all thought that episode was done with.  So it was a big shock to get the call from my mother, that my sister was in hospital because she’d collapsed at work because of a previously undetected, 15 centimetre tumour sitting between her chest wall and her left lung.   Then of course the shock of her urgent surgery (lung removed along with a significant chunk of her rib cage), waiting for pathology (malignant), seeing her lying unconscious while the respirator moved her body up and down in such an artificial, mechanical manner.  Observing the awful months of chemo and scans and waiting for results.  Feeling helpless and guilty, all while trying to hide our grown up fears in front of her kids.  Dealing with morons at work or in life who think you care about their petty day to day complaints.

So yeah…genetics, infection and stress.  I think I’ve got those covered.  I’m thinking about this tonight because yet again, my sister is back in hospital.  They don’t think it’s cancer.  They think she has a collection of fluid around her kidney and spleen causing intense pain and nausea.  It’s almost certainly because of the surgery she had a few months ago (which was for cancer).  It’ll need to be aspirated one way or another.  Seriously, she can’t catch a break.

So I’ve got Graves and I don’t really know how.  But I don’t have cancer.

And the results are in

Somewhat upsetting as I was hoping to feel better by now. But as the heading says…at least I know I’m not crazy. Certainly it feels like it sometimes.

My T3 level hasn’t come down as expected and my medication has been increased to three a day, rather than two. The endocronologist puts this down to high levels of antithyroid antibodies in my blood, and her assumption that I’m under a lot of stress. Well thats the understatement of the millenium!

She asked me if I was feeling any better and I had to admit ‘not really’ and asked her about the joint and muscular pain especially in my left arm. She replied that yes, this is most likely related and finished with “You have an auto-immune disease.” like that should help me cope with everything. So I spent the rest of the day seconds away from tears, tears of frustration and self pity. I even got caught with a tear in my eye by my assistant but she kindly pretended she didn’t notice.

I’ve decided I need to leave my new job, maybe take a couple of weeks off and then look for some contract work…a low level of responsibility sounds good right now. Will need to chat to the folks in case I run out of cash but right now I feel like I need to prioritise feeling better. Also talking to my old bosses who in general are more sympathetic people (not perfect mind you but at least we all like each other!) and with luck this might be a short term financial solution for when I leave the other job.

Keeping everything croossed for better luck!

And another week goes by

Really really really stressful week at work. Issues. It may not be for me. Going to chat to a few trusted advisers over the next few days to try to get some perspective. Monday morning about 10am I was told I look tired and it was all I could do to suck back the tears.

Went for a whole week trying to find 30 minutes to go get a blood test and finally got some time on Friday lunchtime. So…await test results next couple of days.

Finding it almost impossible to sleep without help (valium) and have had some horrendous muscular pain in my left upper arm so went and got the ‘good stuff’ from the pharmacy this morning.

And…my sister emailed me to get my Dr’s number and then made an appointment so she can go get tested tomorrow. I feel good about that.

Not Ms Happy today. Hope my blood results make me happier!

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