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…!

The thrill of lawn maintenance

Not something that would normally float my boat but…

If you’ve read some previous posts then you know that this Graves ‘thingy’ has badly affected my muscle strength.  I’m two weeks in to a supervised training programme including weights training and while it’s early days, I’m remembering how good it is to feel fit and strong and looking forward to achieving some goals.

Yesterday I decided to re-attempt trimming the lawn.  The last time, I could barely lift the machine thingy…but this time managed to give the lawn a nice little hair cut, all within about ten minutes (it’s only a small patch) and without once having to stop in agony.  Afterwards, I went for a forty minute hike to and from the supermarket, carrying two heavy-ish bags home with me, up and down hills etc.  Ordinarily I would drive 2 minutes to get a litre of milk!  Now, my arms are a little sore today, but in that “I feel like I did something good” kind of way.  And last night I slept like a baby sans any kind of chemical aid…something I almost never do especially on a Sunday night.

I have been a little bad this week in terms of regularly taking my neomercazole.  I guess this is the danger in feeling better…without being overly symptomatic its easy to forget those two little pills every morning.  As I understand it, neomercazole (carbimazole) has a fairly long ‘hanging around time’ in the body so hopefully the odd inadvertant day off schedule is no big disaster?

Sticking to a fairly strict nutritional plan most of the time (more protein, less carbs, eat more often) but no apparent weight loss yet.   If things don’t start to shift soon I guess I may have to redefine what most of the time means, to all of the time (and even when I’m not ‘on plan’ I’m quite cautious).  The seasons are changing and nothing fits so hopefully I’ll start to see some improvement before I have to go buy a whole new wardrobe!  I love shopping but it’s not that satisfying when you have to keep going up sizes!

Oh my aching bones….

The only symptom worth getting and I didn’t get it

I’m talking about ‘unexplained weight loss’.  And I’m only being slightly facetious.

Instead, I’ve had weight gain.  40lbs of it.   And the explanation is pretty clear.  I’ve been eating as if it were an Olympic sport and I’m the gold medal hope of a nation.  And not just eating, but eating food I previously didn’t consider to be actual food.  Like frozen crumbed chicken (not eaten until 30+ minutes in the oven of course…I’m not that pathetic!) or muffins (which I could never understand as a breakfast food…it’s cake people!).  The sorts of things I would previously have avoided like anything.  And it’s not that I don’t understand nutrition.  In fact I’ve studied physiology and nutrition at College so I’m hardly ignorant about the composition of food.  The endocrinologist did say that with treatment hopefully my appetite would normalise.  I’m just not sure she understands how committed I’ve been to abnormalising that part of my lifestyle and how hard it’s going to be to bring it under control!

When I was given the Graves diagnosis (made all the more complicated by the fact that I was stacking on, not taking off, weight) I think I subconsciously took that as the OK to start shovelling all manner of crap into my mouth.  If I’m sick anyway, and I can’t control it, why bother looking after myself?  And exercise?  Well that wasn’t realistic given the muscular pain, the shortness of breath, the palpitations.  And so I ate, and didn’t move and a few months later I’m bursting out of my clothes whilst people look at me with one eyebrow dubiously raised as I say “No really, my thryoid is too fast”.

I went to a family funeral last month and saw some relatives I haven’t seen in years.  Some may remember that one of my sisters has cancer.  Physically, she’s doing well (mentally has up and down days) and looks pretty good, or at least a lot better than someone with her troubles should look.  We nearly pee’d our pants laughing when we realised everyone at the funeral would be looking at the two of us and muttering “She doesn’t look like she’s got cancer.  And the other one…look at how fat she is….she can’t possibly be hyperthyroid.”  Gotta laugh I suppose.

As of yesterday I’ve committed to the next few months with a personal trainer.  I’ll see her three times a week (2 x light cardio, 1 x weights plus ‘homework’) and she’ll monitor my food intake.  At regular intervals we’ll assess progress.  Even if I don’t lose stacks of weight, hopefully I can regain strength (last night, 5 girlie push ups were all I could manage and this is after years of being able to give 20 or 50 man style push ups no problem) and motivation to have better general health.  I want to turn that heavy ‘blech’ feeling into ‘feeling pretty good’.

My trainer is a petite blond (aren’t they all) with a perky disposition (hey, you can do it!) and she’s so used to pep talking that even her normal conversation sounds like yelling.  I’ve told her about the Graves, told her I’ll complain and moan all the way, but to ignore me for the most part and keep me on the straight and narrow.  It’s not a cheap commitment and I know I’m lucky I can afford this little kickstart.  I see this as an investment into a better future hence why I can justify the expense.

I called my friend about the ‘contest’ and told him I wasn’t weighing in this week (he answered “Oh thank god!  I’ve been a pig!”) but told him about my new commitment.  In order to win a $150 voucher I’m going to spend much, much more than that.  He completely misunderestimates just how competitive I can be!

Has anyone else stacked on the lbs and kgs with Graves?  How did you handle it?

R xo

Back in the land of the living

Have just finished a week at my new job. And who would have thought it? Everyone has been really nice, really welcoming. No ‘issues’ or ‘attitude’ like the people at my last job. I’m ‘in training’ so haven’t yet been placed under pressure but so far, so good. In fact, in some respects, it feels like they are trying to impress me. Nothing seems too much trouble for them, they’re keen to be social, people laugh in the office etc. My boss is very ‘naughty’ and un-PC (which I appreciate) and his team all seem to have genuine affection for each other. I’m really pleased I accepted the role and looking forward to getting into some ‘real’ work and becoming part of the fabric of the workplace. It feels good.

I’ve not had too many Graves symptoms either this week. A few heart flips perhaps. I was remembering how my left hand used to be in an arthritic type pain almost constantly… that seems to have diminished to almost nothing. I’m sleeping pretty well…even my kitteh was up before me this morning (she’s an odd’un in that she doesn’t wake me and likes to sleep in until 11ish most days). I feel like my mind is more clear and I’m able to just…get stuff done. But…I’ve been really bad at managing my eating and haven’t done any significant exercise at all. Ah well…I’ve made an appointment with a trainer for Monday and told her I need help ‘getting strong’. I wore a mid sized heel this week…first time in ages…and I spent most of the day being completely paranoid because I don’t feel like my knees are being supported by my muscles and I’m terrified of injury. Once I start with weights I should regain some confidence I hope! She’s going to monitor my diet as well. I definitely need someone to help me find motivation as I don’t think I can use Graves much longer as the excuse (feeling too ‘normal’ for that to be true!). A male friend has challenged me to get healthy and lose weight before Christmas (and of course, for men, everything has to be competitive). As I remember it, there’s nothing in the rules that says I can’t hire help! And there’s a $150 voucher at the end of this that I want to win (even though I realise I’m going to spend a LOT more than that on the process but thats not the point…).

This week I learned I’ve been nominated for some industry awards based on some past projects…very cool! I’m not taking it too seriously but it will be fun to dress up for the dinner when they announce the winners later this year. It’s interesting…I did the work in the period when I was suffering the worst symptoms of Graves, although at the time I didn’t know that was what I was experiencing. Here’s hoping that now things are under control, I still have those little flashes of creative genius!

Ow!

Yesterday I got this sudden burst of energy. I don’t know where it came from. I hadn’t had a day as active as that in…months! So many things I was procrastinating about got done. I finished all my unpacking (having moved 2 months ago). I folded and put away baskets of clothes (although when I employ logic..i.e. if I wear the clothes they’ll end up in the basket eventually anyway so I wonder why we do this chore). I even got out my lawn trimmer and trimmed (you guessed it!) my new lawn. When I first picked up that piece of equipment I thought “Oh thats lighter than I thought”. About 6 minutes of grass slashing and industrial levels of vibration later, I was finding it really hard to keep ahold of the trimmmer. It was all I could do to finish the job. It was hard! My arms felt like lead. When I was done they had no flexibility and took some time before I could really feel anything else. Today…it feels like I’ve been lifting weights in my sleep. I used to be really fit…now I struggle to trim the lawn for 15 minutes without feeling like a cripple the next day. It really highlights how sedentary my life has become since Graves came into my life.

Have just emailed a personal trainer explaining my condition and what I need…strength! I’d also like to get rid of the extra 30lbs I’ve managed to stack on over the past year. I wonder if my metabolism will allow me to do that?

And in the meantime, sitting here, writing this…I can feel my heart doing little flips. I really hope the endo is right when she says I’ll lose that soon! She offered a mild dose of beta blockers but that feels like an extreme measure to me. My blood pressure is on the low side, so I know my heart is ok, even if it rudely intrudes on my thoughts. Feeling that does make me wonder how much I can actually do, exercise wise. I guess I’ll have to start slow, track everything, see how it goes! I don’t expect to ever run marathons, but maybe next time I can trim the lawn without wanting to cut both my arms off the next day!

Numbers

Going to the endocronologist is a little bit like a highbrow game of bingo, and there are only a handful of numbers being played for. But if you get those numbers right then you win….something. Warm fuzzies? It’s funny too how you feel like you, the individual are responsible for achieving certain number, as if you had complete control over your physiology. If the numbers are good, you feel like you’ve achieved something. If they’re not right, you somehow feel like you didn’t work hard enough to get them right. The whole problem of course, of having an auto immune disease is that…you have no control. You wouldn’t sit around with a drip adding poisonous toxins into your own blood stream, or at least a sane person wouldn’t. But essentially thats what Graves is. And the evil genius behind it all are those pesky antibodies. The endo said to me ” I was a bit worried about you because your body wasn’t reacting the way it’s supposed to”. No kidding! But then I’ve always been a little…left of centre.

Finally my T3 is within normal. It’s at the upper end of normal but still….normal. The doc said it might take a month or so for my symptoms to catch up (I still have the odd heart palpitation , breathlessness, muscle weakness etc). She said within a few weeks I should start to find exercise somewhat easier so once I start my new job (next week) I’m going to get a trainer who can help me, especially with strength training. It’s hard to explain how weak I’ve become. I’m as ‘plushy’ as a foam sofa to use a funny phrase from a friend of mine. I used to be one of those people who did boot camps and could happily ‘drop and give me 20 man style push ups (at 8am on Saturday mornings…crazy right?!)…but not any more. Opening jam jars is hard enough! It’ll be tough but I know I feel better when I’m stronger and exercising regularly.

Meds have been reduced from 5 down to 2 carbimazole per day and I’ll stay on that regimen until October when I’ll have my next blood test and consultation (and pending those results, another in January). Apparently they’ll then review me in April next year (12 months into this journey) to see where my antibodies are at and what my chances of still having the disease are, along with potential for relapse (a 50%+ chance).

When I see the relapse numbers there’s a part of me that feels like I’m on a long journey towards a thyroidectomy ( as has my grandmother, my mother and two aunts) but I’m trying to stay positive that I might be the one for whom this rigmarole all works and I can remain surgery free!

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