Princess Perfect

I came to the realisation this past weekend that I can’t be.  Perfect that is.  It goes totally against my nature to let things slide, but if I’m to retain my sanity over the next couple of months, I’m going to have to let some things go.  Quick status update….

My sister will have surgery this week and we are hoping for no nasty surprises.

No weight loss despite dilligent exercise and adherence to diet the majority of the time…none at all.  I have to say this is pretty discouraging.  I’m trying to keep it up because despite no weight loss I am definitely stronger and have greater physical stamina just to do everyday things.  ‘Glass half full’ I guess.

Had a blood test yesterday (about 2 weeks overdue) and will get the results in a couple of days.  Hopefully my levels will be normal, including anti-bodies, and the Doctor will give me the ok to go down to 1 x 5mg neomercazole per day.  I’m crossing fingers…although my left arm and hand has been aching this week which for some reason is usually an indication of how my Graves is doing (or it might be that I’m sleeping on my left…who knows)

Waiting on a specialist appointment (2 months away) to check out why my girl’s guts are so awful right now (this situation is not new but I am definitely at the end of my rope with this one).  I’m 39 and I think I’m done with them and seeing as they are not being used have suggested I would like them out…but of course the medical folks think that makes me a bit nuts. I mean, what if I decide to have a miracle, immaculate conception baby at the overripe age of 46 despite the fact that I’ll no longer have viable eggs?  The whole thought grosses me out.  If I end up bitter and childless I’ll adopt so I have offspring to transfer my bitterness to the way every other parent transfers their issues to their children.

Really really tired the past couple of weeks.  Just can’t seem to sleep well and when I do I wake up tired.  my doctor is only somewhat sympathetic and is suggesting hypnotherapy rather than begrudgingly prescribed drugs which I have to ration for important days where I REALLY need sleep…I mean, really?!  Really?!

Ok…off to see my poor, long suffering trainer who I think doesn’t want me in his ’stats’ because I’m making his trend line point the wrong way.  Blah blah blah…another day in paradise!

Will update later this week on my sister’s status post surgery and also my blood results.

Six months since diagnosis.  Probably 2 years since becoming symptomatic.  Time flies…!

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.

Turning around

So lots and lots has happened since my last post.  Almost too much to tell.  But here’s some of it.

My sister has had surgery to remove two malignant tumours.  After a week in hospital, she’s now home, still in remarkable spirits for someone who has been through so much.

With that and a lot of pressure at work, there’s been days I’ve forgotten to take my meds and I’m getting heart palpitations intermittently.  Still much better than before.  I do think I’m beginning to chunk up a bit though.  Could really do without that part.  Guess I will have to be really really careful about eating.  Finding that I still can’t really drink alcohol.  Even two glasses makes me feel quite ill.  And still keeping caffeine consumption low although allowing myself the off cup of tea here and there.  Next blood test is next week.

And today I was offered a new job with great pay, conditions and they seem to be a really cool group of people with a lot of empathy for their staff.  I’m considering things over the weekend but more than likely I’ll accept and be able to put my current job situation behind me.  With a new sense of strength I can see even more clearly that being there in the first place was the wrong move and not just because it coincided with my diagnosis at the height of my symptoms.

I read somewhere this week that the singer, Toni Childs (not my musical cup of tea), suffers with Graves disease and she had a ten year ‘break’ in order to recover.  In the article she said that she had to change her whole life.  It really brought home to me the need to take this disease seriously as the ramifications can be far reaching not just for the sufferer but their friends and family too.

Alcohol is the devil

I succumbed to peer pressure last night and had maybe three glasses of wine. Thats a lot less than I would normally drink on a typical Friday night work related binge but I’m certainly feeling the after effects. Woke early and have no change of going back to sleep. Of course I forgot to take my neomercazole last night too. I thought a glass of wine at the end of a long and emotional week would be just the ticket. Funny then how this mornng I just feel kind of ….blech!

The theme for the coming week is ‘tests’. My sister has more tests and is facing surgery as soon as possible to remove the suspicious lesion. My next blood test has to be taken by end of the week. And I’ve been asked to take on online test to show aptitude etc. Sort of a psych evaluation (yeah, good freakin’ luck!) as part of my job application to a big, big company.

I find that kind of bizarre and interesting all at the same time. And I really want the job. The role is great, pay and conditions are good….but best of all, it’s based less than ten minutes from my new apartment and work hours are 8.30-4.30 AND you can work from home one day a week. Sweet! Obviously being able to get a bit of that elusive work/life balance happening would only help my Grave’s recovery. Wish me luck!

The other shoe drops

I’ve been feeling better this week, a lot better. I’m still having one cup of tea in the mornings but the strong, long cappucinos are on hold. I’m not missing alcohol at all and I thought I would. Tonight I was at a work function and on the way home I thought about how much better I feel without that slightly ill, dizzy, tipsy feeling. So thats all good and I’m glad.

But now the focus goes elsewhere. I thought I was having a bad week on Saturday when the nice Japanese lady drove her car into and nearly through my passenger car door. Ok…it’s just a car and I can take the bus for a few weeks while they fix it. But yesterday my other sister confirmed her fears that the cancer she’s been battling for the past three years, is back. Shit. So despite the disfiguring surgery and the stomach churning chemo, the cancer is back. Double shit. They’re planning surgery for her late next week. More scars, but hopefully this tumour will also be self contained. And then what?

I’m still special

My sister’s blood results were all normal which is great. Regardless, I’m glad she went to get a check up and the doctor, my GP, has ordered her a bunch of general tests that are long overdue.

We girls in our thirties and older always seem to consider ourselves last don’t we?