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…!

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.

DIY Graves treatment?

I wonder about those people who say they’ve ‘cured’ themselves of Graves without any kind of medical or surgical intervention. What do they know that I don’t? Does anyone know?

As I understand it, there is no ‘cure’ for Graves, only treatment and hopefully, remission. I know I can help myself by being careful about things like diet (limit iodine and stimulants) and stress. But I also know that if I’d waited for those things to work, and eschewed medication I’d be in a bad bad way by now. If I was still here at all!

By the time my Graves was diagnosed I’d obviously had it for some time and was ‘highly symptomatic’, even more than my blood work would suggest. My anxiety levels were ruining my life – relationships were difficult, work was a horror. The pain in my muscles (especially my arms and my hands) was indescribable. And of course the heart palpitations were really scary. And I almost never slept. I just can’t imagine wanting to self-treat under those circumstances. Of course when I was diagnosed I read everything I could find on the implications of treatment and not being treated. My conclusion? Bring on the meds for me!

I think the greatest challenge for me in the next couple of months is going to be maintaining a healthier, less stressful lifestyle. It’d be easy to fall back into the trap of being Superwoman again, while I’m feeling so much better.

My new mantra (repeat after me)…”Good enough is ok most of the time.”

“Go home on time” is my other new philosophy.

And so to bed.

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!