Graves takes all the fun out of being an alcoholic

People have asked me….’Can you drink alcohol while taking neomercazole (carbimazole)?’

As far as I know, the answer is ‘yes’. Is it as much fun? As far as my experience goes, the answer is ‘no’. For some reason, ever since I’ve been medicated for Graves, I just can’t push the alcohol boat out as far as I used to. After 2 or 3 drinks I’m just ‘done’. Not drunk, just not interested in drinking. It’s like my brain turns off from the experience or maybe my body doesn’t want to process it.

I’m sure some people are horrified that I might want to drink more in a way that sounds irresponsible (by the way kids, drink responsibly!)…do I sound like an alcoholic? Well I definitely inherited the family gene for overindulgence which in some previous generations has manifested itself as alcohol abuse. I used to have a cast iron liver and work in an industry where drinking is part of your career progression plan! My family are all ‘party people’.

But these days I’m the one sitting there at 11pm, tapping her toe and looking at her watch. In fact that was me last night. It’s the morning after my office Christmas party and I’m the only one around here not sick or in self-inflicted pain. Thats good I suppose…but it begs a more fundamental question. Has Graves made me boring?

Ugh!

So yes it’s been a while since I posted.  Lots going on…work, family, health.  Where do I begin?

I had an early dinner (drunch?  linner?) with friends tonight and it took every piece of energy I could muster to get dressed and get over there.  It was a laugh or two so I’m glad I went but I am finding it extraordinarily hard to be motivated to do nearly anything….writing this post included!

Still ‘maintaining’ on neomercazole.  Some days I imagine I am feeling “Graves-y” (sore hands, heart flips, anxiety, insomnia) but I push this to the back of my mind because the pathology doesn’t support that.  And without medical evidence it doesn’t exist right? 

Next week I’m heading to (yet another) gyneacologist who specialises in endometriosis.  I have all the symptoms and have had them for years.  Lots of terrible pain, bloating, nausea and the list goes on.  At least two weeks out of every four since I was 11.  However…past laparoscopies and examinations have found…absolutely nothing.  My doctors think this is a good thing.  Personally, I would like them to find something to treat and then maybe I could get on with my life!  They’ve already suggested another surgery and I’m keen to impress on them that if they open me up and DON’T find anything, wake me up and tell me to go home because I ‘don’t need any treatment’ I swear I will punch the doctor in the nose!  Ok that makes me sound like I might have Munchausens or something but my point here is that if you listen to your body, you KNOW when something isn’t right and it’s OUR job to make sure we get the proper care regardless of what the so called experts say!

It occurs to me of course that this issue is not unlike the journey of the Graves sufferer.  Most of us are not diagnosed until we present with several complaints.  For me it was at least 5 separate doctor’s visits before she agreed to test my thryoid  and only then at my insistence (her rationale for not doing so being that it had been normal 12 months previously…in fact the historical evidence is that it was ramping up dramatically over the previous 3 years).

Other updates…

No weight loss but in fairness I am not being strict about my diet.  I am still exercising and gaining strength.

My sister begins a 5 week cycle of radiotherapy tomorrow which she and everyone knows is largely a “buying time” strategy but you have to don’t you?

And I need to take better care of myself!   My mission for the week is to book a massage and a pedicure!

How is it that the start of this year went by so fast and in the last month it is going…….by…….so………damn……….slowly?

2-0

Updates….

My sister is doing well post surgery and they were able to preserve her kidney although she lost her spleen and a chunk of muscle.  We’re relieved there were no nasty surprises!  Next steps are recovery and aggressive radiation therapy.  She’ll be in hospital for a couple of weeks.  But this is good under the circumstances.

My endo called this morning and I am officially ‘normal’ on all counts with a TSH just creeping in at 0.6.  I’m sure there will be many who dispute that I am in any way normal….anyway, she’s allowing me to drop down to 1 x 5mg neomercazole per day for the forseeable future.  So I guess I am officially on the maintenance track…6 months into this journey.

In the meantime, all I wanna do right now is sleep……..

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.

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!

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!

Caffeine withdrawal is for sissies

I was dreading this part…giving up caffeine. Many years ago I attended a detox ‘retreat’ and my caffeine withdrawal was so bad I wanted to murder someone. I never did go back up to my caffeine drinking heights so this time around I’m not feeling soooo bad. Yesterday I made it through with only one weak cappucino and got a little bit headachy later in the afternoon…but survived. Today I had a cup of tea and a really weak instant coffee and didn’t miss a hot drink the afternoon. And today I probably felt better than I have in a very long time. I even made lists of tasks at work…and crossed some off. I wonder if the increased dose of carbimazole has kicked in already?

Looking forward to crossing work off but trying not to make rash / graves generated decisions. Caught up with my old boss and he helped me see a way forward and it highlighted to me how I’ve let my confidence break over this disease and trying to keep everyone else happy. I’m biding my time….

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