Wednesday, 24 April 2013

Charli's Crafts - Guest Blog

My guest blogger today is someone very special to me, it's my eldest daughter Charlotte.  

Charlotte is only 7 years old and she has started her own little business called 'Charli's Crafts' and today she would like to share some of the awesome things that she is making with you all.


Come See me on Facebook

Hi Everyone

My name is Charlotte and I am seven years old and live in Auckland with my Mum and my little sister Rosie who is three years old.  My Mum is typing for me today as it would take me a very long time if I had to do it on my own!

Kids Fleece Hats
When I six years old my Mum showed me how to use a sewing machine.  It was really good fun and I wanted to sew all the time.  I am really lucky as I am a homeschooler and I get to learn at home with my Mum and my little sister.  We get to do all sorts of cool things and learning to sew was one of them.  The first things I made were for a homeschool project.  When my project was over I still wanted to sew and the things I was making I wanted to sell.

Kids Fleece Hats

My Mum rang the lady who runs the Orewa craft market and I got to do a stall there one week.  I did really well and it was really good fun.  I found it quite hard to talk to people at first but after a while I enjoyed it.  I have now done four craft fairs and my Mum has helped me set up a website and a facebook page where I can show people what I make and sell stuff.

Tote Bags
When I grow up I want to be a fashion designer and make lots of lovely things.  I am really excited that I have been in the newspaper and I am going to be in the Little Treasures magazine too.  Today my favourite shop Spotlight wrote to me and they are going to do a story about what I make too.  It's really exciting and I am having fun.  My Mum makes me wait till after my learning to do my sewing now even though I would much rather sew than do Maths! I love weekends when I can sew as much as I want to.
Tablet Covers

I was really excited when my Mum got me sewing lessons and I have a really nice lady come to visit me at my house every month called Diane Lemmon.  I am learning so much and I got to make my own party dress.  It was the coolest thing ever to wear it at my church camp.  I am going to make my little sister a dress next, I would like it to match mine.
Tooth Fairy Pillows

I hope you enjoy my pictures - if you would like to come and visit me on facebook :-)

Charli xx 

Tooth Fairy Pillows

Tooth Fairy Pillows

Tablet Covers, Phone Covers and Glasses Cases

Tote Bags

Thursday, 18 April 2013

Hashimotos Forever...

Today has been another good day and yet another day where I haven't needed a rest to get through the day.  In fact I even went out for a little walk with the girls down to the duck pond.

I have been doing heaps of research today and talking with others who have Hashimoto's as I start to understand something I seemed to have missed along this journey.  The fact that Hashimoto's is going to be my 'friend' forever, once you have it, it isn't going anywhere.   Not sure where I got the idea that a thyroidectomy(TT) was a cure for the condition but I was very mistaken it seems.  As yet there is no cure for this auto immune disease.  The TT will improve things I hope and one lovely lady told me it will help the hormonal fluctuations which should help but basically it's not going anywhere.

Now I have to decide my next move.  According to my research the first thing I need to do is go Gluten free as gluten is a trigger for Hashi's.  I also need to get all my vitamins and mineral levels checked on a regular basis, which I am going to look into next week with my GP.  I might even self refer myself to medlabs and get everything I want tested then sent through to my GP, might be easier. I already know I am vitamin D deficient but whether the supplement I am currently taking is hitting the spot only a new blood test will tell.

I am staying positive though because I do truly believe things are much easier to deal with when you understand them.  For years I have suffered with weird and wonderful symptoms everything from severe headaches, intolerance to cold, digestive issues, gall bladder problems, hair loss and most of all aches and pains all over my body that at times has been debilitating.  I am hoping things are going to improve ten fold but at least I know when I am having a bad day with my hips or some other joint in my body hurting I will know what it is, so at least the worry side of all this can be put on hold!!  I also know it won't last forever and will have weeks where I feel on top of the world and perfectly normal. 

I am going to spend the next few weeks looking at going gluten.  I am not ready to ask anything else of myself right now but it certainly does seem to be the way to go.  I bought myself a book today called 'Stop the Thyroid Madness' so will continue my research when it arrives next week.  Managed to get it a lot cheaper at the book depository.

I just wish I had understood that the Hashi's was here to stay, it was hard not to feel incredibly disappointed and ever so slightly depressed about the whole thing.  I am not one for wallowing though so tomorrow I AM going to wake up and get on with finding out how best to live my life with this disease with the least amount of interruption to my life and the lives of others around me. (Gosh bordering on sounding almost positive tonight!!)

Thanks to all the lovely people I have spoken to about this today, your words have meant a lot to me.  There is definitely something to be said about knowing you are not alone and that there are literally millions of other people in exactly the same boat as you.

Well folks that's me signing off for the night....Miranda is due on shortly and I could do with a really good giggle!!

Lastly have I said how fab my folks are?  Well they are...without them right now I don't know what I would do, their support, their love and broad shoulders to cry on are simply everything a daughter could wish for at a time like this, thank you both so much.  You are two incredibly people and my daughters and I love you very much.

Kate x

I wish I hadn't had to have my thyroid out at all and that I had taken my problem more seriously earlier.  If I had found out about the Thyroid factor I would have tried this than surgery!

Wednesday, 17 April 2013

9 Days Post Thyroidectomy

Update time...

I went to see my lovely specialist today (gosh it really does help if you like your specialist!!) Today is a good day as I got all my histology reports back today.  My man basically said I am one very lucky girl who had my ugly horrible thyroid taken out in good time.  I know I have already told you how brilliant my docs are but thought I would let you know who they are in case you are looking for an Auckland specialist, then I would highly recommend these awesome people!  I have been so well treated, never rushed and most importantly all my concerns and questions answered with great patience and care. Click on the AH&NS to be linked through to their contact details.

9 Days Post Operation
My results showed the dissected thyroid wanna see?  Will post it further down so be warned!!! (Although not nearly as gory as the the picture from my last blog!) My specialist said I had a number of things going on, thankfully the thing I was most worried about I have escaped and that's any form of cancer.  Although pre-cancer cells were found this procedure was done early enough to save me from the complication of any malignancy.  All of the thyroid was removed along with any nasty cells, so worry over :-)

They did find that I have Chronic Lymphocytic Thyroditis which I believe is a sub type of Hashimoto's disease usually the type found in children....which made me laugh.  For my fellow thyroid sufferers my report said my assessment reveals a multinodular goitre consisting of variably sized follicles, some forming colloid cysts with associated fibrosis, haemorrhage and focal calcification.  Frequent lymphoid aggregates also appreciated, some with reactive germinal centres. Hurthle cell changes is minimal.  There is no evidence of malignancy. No parathryoid tissue is seen.  I was very happy that no parathyroid tissue was found and thankfully my calcium levels remain stable.

My specialist also mentioned that the largest of the lumps was burrowing backwards towards my spine through the gaps left by my last spinal surgery six years ago.  I might be wrong but it was this he seemed most relieved about and mentioned that this could have been a really nasty complication left any longer.

Histology of the Thyroid
So all in all I get the feeling I am one lucky girl and although I am not feeling on top of the world at the moment.  I need to thank my lucky starts that this was caught when it was and not in a year's time when the outlook would not be nearly so bright as it is today :-)

Recovery is long as I am finding out and my goodness you do have to be patient with yourself.  My moods are all over the place and I find myself swinging between wanting to burst into tears over the smallest things and being full of energy.  I suppose an exaggeration of what I was suffering with before but amplified.  The tiredness is overwhelming and by two o'clock most days I am totally wiped out and want to crash for a few hours.  I find it all very frustrating and I just want to get back to life. I am at least off the painkillers now so feeling less foggy and so far I am in a good rhythm with taking my thyroxin with the help of a rather clever app for my phone!

I am still getting quite bad headaches, not as many as before and thanks to a tip the surgeon gave me a couple of capsules of magnesium really are helping.  I think I am beginning to see the light at the end of the tunnel but as the main man told me today it will be at least three months before all my levels stabilize and I will start to know whether I am on the right amounts of thyroxine.  It's hard to hear that though, the problem with me is I want my health back now, right now, none of this waiting around lark!!

In conclusion at this nearly ten day post op point I am struggling with my energy levels and being a bit over emotional but you know what it's not going too badly, not really.  I am learning to take each day as it comes and remembering to be kind to myself.

One thing that really did make my week was starting back with my kids learning.  The girls only missed five days and I have tried not to worry about it too much, we generally work through school holidays anyway, so probably do considerably more time 'in school' than most school children.  With the Holidays starting next week instead of working all the way through like we normally would I will take another weeks break in the middle and work through the other two.  So we will still get an extra week's learning in even with my operation :-)  Just maybe not quite so much going on in the afternoons for a few more weeks, so lots of independent play and sewing will be going on in our house!!  Charlotte's shop will be overflowing with creations!

Well have done really well today after our six am start but at four pm I am now absolutely sold out and it's time to put the computer down and close my eyes.  For all you fellow thyroid sufferers out there I am thinking about you and hoping your path is simple, easy and you get well soon.

Kate x

I wish I hadn't had to have my thyroid out at all and that I had taken my problem more seriously earlier.  If I had found out about the Thyroid factor I would have tried this than surgery!

Saturday, 13 April 2013

Thyroid going, going, gone

Hello my wonderful friends whom I know and I don't know yet!

I am now five days post op having my total thyroidectomy and I thought it was time to share :-)

Previous to having my TT (total thyroidectomy) I found it incredibly difficult to find much out there about it that wasn't horrendously negative or just downright depressing.  It was my hope that my experience of this operation and recovery would have a better ending and that I perhaps could write a few blogs about the upside of this operation and living without my thyroid..

Flowers from Mum, Dad and Debs
Some background for you first about why my TT was necessary I suppose might be useful.  About two months ago now I rushed myself off to A&E when my thryoid blew up like a small tennis ball and I convinced myself I was finding it hard to breathe.  They took me in and it was discovered that the goiters I had had for some years, six years at least to my knowledge had grown somewhat, one in particular and was now being described as a tumour, hopefully of the benign variety.

I was released that night with an emergency appoinment to see a Doctor Mark Issard privately in Remuera.  Well as you know my dear friends Doctors and I well we have had a few path crossing moments in the last few years and I have to be honest when I say I was not looking forward to yet another meeting with a doctor and knowing in my heart of hearts that removal of this offending gland was to be suggested.

I meet up with Dr Mark who I have to say is just one of the nicest Docs I have ever had.  This doc restores my faith in doctors completely not only does he explain everything in terms that you understand without treating you as if you are stupid, he is kind, compassionate and has the bedside manner of an angel.  Ok so I totally have a crush on my surgeon :-) but at least it gave me something else to think about other than cutting my neck open!!  Joking aside though he has been brilliant from beginning to end in his treatment of me.

My Very nice Room at St Marks Hospital
When I first saw him I had an ultrasound that discovered that the lumps and bumps had grown hugely since a scan six years ago when my multi nodular goiters had been discovered when I was pregnant with my first baby.  I was told back then not to worry about it and just to ignore it - not very good advice it turns out!

Flowers from Rod (Six months together now!)
I also had a CT and this was I believe to establish where all my nerves and muscles were due to having previous neck surgery some seven years ago when I had titanium discs put into my neck in Australia.

It was at this point Doctor Mark discovered something that other doctors up till now had missed. I had something called 'Hashimotos' disease.  During tests in the past my results were always normal but this Doctor decided to do tests that were not your average tests as I had all the symptoms of having hypo thyroidism without the blood tests and had done for years.  To cut a long story short my results for Hashimotos came back as a reading of 357 I believe the normal reading is under 50 or some such thing. It will sound strange but I was actually pleased when I found out about the Hashi's as I felt like I wasn't going mad afterall!  All these years of being freezing cold, losing my hair, finding it impossibly hard to lose weight (even though I did) all had a reason and that was this Hashimoto's disease.

For those of you who don't know what it is a quick low down on the disease from our friends at Wikipedia (!) -

Hashimoto's thyroiditis or chronic lymphocytic thyroiditis is an autoimmune disease in which the thyroid gland is attacked by a variety of cell- and antibody-mediated immune processes. It was the first disease to be recognized as an autoimmune disease.[1] It was first described by the Japanese specialist Hakaru Hashimoto in Germany in 1912

Signs and symptoms

Hashimoto's thyroiditis very often results in hypothyroidism with bouts of hyperthyroidism. Symptoms of Hashimoto's thyroiditis include Myxedematous psychosis, weight gain, depression, mania, sensitivity to heat and cold, paresthesia, fatigue, panic attacks, bradycardia, tachycardia, high cholesterol, reactive hypoglycemia, constipation, migraines, muscle weakness, cramps, memory loss, vision problems, infertility and hair loss.

The thyroid gland may become firm, large, and lobulated in Hashimoto's thyroiditis, but changes in the thyroid can also be nonpalpable.[2] Enlargement of the thyroid is due to lymphocytic infiltration and fibrosis rather than tissue hypertrophy. Physiologically, antibodies against thyroid peroxidase (TPO) and/or thyroglobulin cause gradual destruction of follicles in the thyroid gland. Accordingly, the disease can be detected clinically by looking for these antibodies in the blood. It is also characterized by invasion of the thyroid tissue by leukocytes, mainly T-lymphocytes. It is associated with non-Hodgkin lymphoma.

Now it isn't usually the case that you need a TT with Hashi's but unfortunately for whatever reason my thryoid had decided to get mega angry and the goiters in particular one nasty one were getting out of control.  When it started to become symptomatic I was left with little choice but to have the offending gland removed.  I gave it so much thought and would rather have done just about anything else.  It had started pressing on my vocal nerves and had started effecting my ability to sing and for me this was the last straw.  My Doctor Mc Dreamy (sorry ;-) explained that this would worsen and over a period of time the growths would eventually cut off my breathing.  So to be honest it didn't take a rocket scientist to realise that it was time for surgery.

1st Day Post Op
On Monday 8th I had my total TT and I would love to tell you that I was my normal calm self but I would be lying.  I don't know whether I had just had too long to think about it or what it was but I was utterly panic striken even believing at one point that I wasn't going to wake up from my operation and this was it.  It has been the scariest week for a very long time and I am so pleased to be out the otherside in recovery mode.  I asked if I could see a picture of the thyroid as I believed this would help me come to terms with having it removed.  I hoped it would look horrendous so it was easy to understand the necessity of removal.  As you can see from my picture I certainly got this wish!!

Probably the hardest part of my operation day was saying goodbye to my Mum and sister who had accompanied me to the hospital and worrying about them!  I know that when I was in recovery I could hear them talking. I could hear the worry in their voices but the sedation was so heavy I simply couldn't open my eyes to reassure them, I just kept smiling in their general direction hoping that would help!  It was great to later speak to my little Mum and let her know I was doing ok.  It is so often the case that I believe it is so much harder for those who are the carers than those who are the patients!!

My Thyroid!!

For all those out there contemplating a TT for me so far it has been a total success.  Apart from the actual operation which is grueling and I did feel like I had been run over by a lorry for that first day. I feel quite amazing already.  I wasn't expecting to notice the lack of goiters in my neck but it's actually very noticeable to me when I swallow and even when I breathe.  I started on the meds for life two days ago and so far so good.  I have also not put on any weight yet and I am eating healthily and normally at the moment.  I was under the impression it would be liquids for weeks but I was eating the following day so even that bit wasn't true!!

2 Days Post Op
Sleep is a bit of a strange thing at the moment but at five days post op that could still be the anesthetic wearing off. Yesterday I slept like a baby whereas tonight again I have only slept for a few hours at a time etc. I do however  definitely already feel like I have more energy even though I am still recovering from major surgery.  I am also much happier in myself so I have to say I have great hopes that for me this has been a good decision and will continue to be one.   I know of course I will have my ups and downs but to be honest my life before TT wasn't exactly working out for me so the choice was pretty easy really.

On a vain note the scar already looks amazing and considering it was an operation on another scar it looks just amazing, my Doc it turns out is also an artist!!
4 Days Post Op

Will keep you updated folks!

If you are someone who is thinking about a TT or you have Hashi's and want someone to talk to please don't hesitate to drop me a line.  I was so desperate to talk through what I was going through with someone positive and who could tell me that for them it was the best thing they had ever done! You can get hold of me by going to my contact page here on my website.

Well folks back to bed for me now, knackered!! Remember folks rest up and be kind to yourself :-)

I know I have already mentioned my amazing surgeon Dr Mark Issard but I would like to take this opportunity to mention the absolutely awesome staff and nurses at St Marks Surgical Centre in Remuera.  Your care was outstanding and I felt so well looked after, you nursed me with compassion and bucket loads of empathy and I am most grateful to you all.  I was very scared when I came in and you made it a much easier experience for me.  It makes all the difference in the world to be nursed by nurses whose calling in life is to be a nurse.  The whole team at St Marks were faultless and I can't thank you enough for making my stay feel like a stay at The Hilton :-)    P.s the food from Nutmeg was also absolutely first class!!

The only place better to be than St Marks it turns out is to be at home with my folks and my lovely girls.  I am being thoroughly spoilt and looked after and my girls are being really good for me.  My eldest constantly asking if she can get me anything or tucking me up on the sofa when I am resting.  My parents have as usual been so wonderful and once again I am left asking myself what I would do without them in my life!!  The emotional support apart from anything else over these last few months has been tremendous let alone taking us in and looking after us all now.  Mum and Dad you are amazing and I love you more than words can tell you.

Have a great day!

My apologies in advance for any grammatical or spelling errors, I am on pain meds and the screen at times has been blurry!!!

Kate x

I wish I hadn't had to have my thyroid out at all and that I had taken my problem more seriously earlier.  If I had found out about the Thyroid factor I would have tried this than surgery!