Sweet Enough

I Think I Might Be Back.....

2006-11-27T16:31:00.000+08:00

Life over the last few months has had me do many health zig zags that was sometimes scary but turned out all right in the end in some obscure way. I was going to start writing again when I got out of hospital a while back but I didn't feel I was contributing much. Now I am thinking well why can't I, just because I am not some great writer, that wasn't the point of starting it was a place for me to release the medical and health crap that has been going on in my life - so I am over time going to change the look of this blog - if I can work out html - and make it more of a medical journal of my life with the occasional happenings in my life.

Last time I wrote here I was experiencing severe headaches and just couldn't function and a week after leaving here I was rushed to Perth by plane as it was thought I had another occurrence of the blood clot, which led to spending 4 weeks in Royal Perth Hospital Neurology/Stroke Ward - thankfully I had a great room mate and we have become good friends and keep in contact even though there is a great distance.

This stay involved discovering that I had very high intercranial pressure from 2 lumber punctures and when releasing the fluid I had no headaches for 24 hours - pure bliss - but then there was talk of having a shunt put in which was all fine and good but you could not put it in my spine because of heavy scar tissue so they would have to go through my head and that was a scary time because they gave me all these scenarios of what they could do - each one more scarier than the last. In the end it was decided that they would drill a hole in my skull and place a probe in their and measure the intercranial pressure over 48 hours - I had to stay in the High dependency Ward for that because Intensive Care was full - this was when my Mum flew down to keep me company and to be their 'just in case'.

After that, it was decided that the intercranial pressure wasn't high enough to take the risk of putting in a shunt and because of my pain issues they got pain management involved especially as I have a pain condition (CRPS/RSD) which I have discussed before. When they came to see me it was discovered that it was actually the pain condition that was causing the intercranial pressure to rise and the headaches to occur because the condition had spread to my brain.

I was tranferred to the Rehabilition Hospital (Shenton Park - part of Royal Perth) as this is where the pain management Team worked from and I was admitted for 5 weeks of intensive therapy through a ketamine infusion and physiotherapy which involved being introduced to the mirror box and also a recognise program which helps you recognise what is left and right which over the years I have lost the ability to recognise the left side of my body because of the intense pain and mobility issues, etc. I have learnt to separate myself from it - it was time to get back in touch or I was facing a grim future.

So the big thing that happened while I was in hospital is that the 'honeymoon period" stopped and was whisked straight back onto insulin - I was devastated that is had suddenly happened over night. I was fine with it all for about 8 weeks (I was on 6 units of novarapid three times a day and 6 units of protophane at night), lets just say the last 4 weeks have been pure hell and I am now on 25 units of both novarapid and protophane and looks like going higher - I have had very high BSL's for the last 4 weeks - I am lucky if I can get it below 20 - mostly you can't even measure it and it is resulting in me having severe vomiting at the moment and jitteriness and flickers in my body and I am also suffering from falling asleep everywhere - I recently was nearly involved in a serious car accident - fell alseep behind the wheel - I fall asleep on the toilet (don't laugh I am serious) and quite a few times that involves fall off and having some nasty bumps to the head and other parts of my body. I fall asleep at work - at watch out if I have a pen in my hand with paper under it - I don't feel it coming on it just happens and I wake up a few seconds, minutes or the longest was an hour later.

So that about sums most of it up - what a funky life I am living at the moment. So thanks for the caring comments and I will hope to get back to commenting on other pages soon and meeting other people out there.

Take Care

~xx~

Absent

2006-06-01T13:49:00.000+08:00

I have been away for quite a while and will continue this absence for a while longer.

Not too well at the moment...hope to be back soon...take care

~xx~

MeMe

2006-05-02T17:19:00.000+08:00

Taken from Julia...

Accent: Well to me I don't have one, but on the phone I am mistaken for my Mum who has an English accent. When I was in the US everyone I met begged me to talk because they thought it was hilarious to hear an aussie accent and then my Dad is Scottish - so who knows????

Booze: Nope not very often - though if I was to it would be a glass of white wine or an exotic cocktail as long as it has watermelon in it.

Chore I Hate: WEEDING, WEEDING & WEEDING

Dog or Cat: definitely dog and I mean a real dog - no yippy yappy ones.

Essential Electronics: Computer and coffee machine

Favorite Perfume: Happy by Clinique and Rockin Rio by Escarda

Gold or Silver: Silver, though I love Rose Gold.

Hometown: Karratha, Western Australia

Insomnia: Hell Yes too much floating around in this head of mine.

Job Title: Maintenance/Purchasing Clerk.

Kids: sigh no, but I have a great niece and nephew to play with so it is all good.

Living arrangements: Live in a house with my whole immediate family currently, but thinking about doing something very grown up and building my own home.

Most admirable traits: I don't know - I hope that people feel I am trustworthy, empathic, kind and loyal.

Number of sexual partners: Let's not go there.

Overnight hospital stays: Way too many.

Phobias: Low heights, rodents, and being alone for the rest of my life.

Quote: "In the attitude of silence the soul finds the path in a clearer light, and what is elusive and deceptive resolves itself into crystal clearness. Our life is a long and arduous quest after truth" ~ Mahatma Gandhi

Religion: I have my own beliefs that I follow and I respect other peoples right to follow their own faiths.

Siblings: One sister.

Time I wake up: 5.30am weekdays and 7.00am weekends or when my niece comes and bonks me on the head with her cereal bowl demanding breakfast.

Unusual talent or skill: No talents or skills.

Vegetables I love: broccoli.

Worst habit: Impatience and self doubt

X-rays: Too many.

Yummy foods I make: Thai curries and stir-fry's.

Zodiac sign: Aries

Missing In Action

2006-05-02T17:04:00.000+08:00

I have been MIA...My nephew had his birthday party on 23 April and I got badly sunburnt/windburnt. I was not a well person for about 72 hours and now I am shedding a few layers of skin...boy the aussie sun is a killer and I had the cream etc on and was in the shade but was not wearing appropriate clothing and that was that.....

Not much happening in my life - it is very boring and predictable and needs to change, but I have no idea where to start. I am really finding it hard to go out and meet new people, I just have no idea how to go about it in a country town. I was asking a few people at work and they looked at me like I had grown horns so I don't know how things are going to work out here and how to overcome my shyness and get a boost in self confidence.....

I though that losing weight would help and so far have lost just over 30kgs (I have put a ticker thing at the bottom of this blog to keep track - more of a thing to keep me motivated) but that hasn't boosted my self confidence at all, just means I have to keep going out to buy new clothes :-)

I don't know, may be coming up here was not the best idea I have ever had.

Happy Birthday Dad 28/04/2006

2006-05-02T16:56:00.000+08:00

I know that the last few months have been very difficult for you and I just want you to know that when somebody has given so much of himself through the years, it is hard to find a way to say thanks. But for all the times you took the time and for all the wonderful memories you have given our family --- Thanks Dad.

You'll Always Be Loved Very Much.

Happy Birthday!

Love Always
Carolyn
~xxx~

Happy Birthday Deccy V 15/04/2006

2006-05-02T16:41:00.000+08:00

One year ago you entered the world and made your family complete. You have brought such love and happiness to all of us and we have enjoyed watching you grow and develop your personality and achieve all those milestones you set out to complete.

I am so proud to be your Aunty Carolyn ~ I never knew you could love someone so much until you and your sister blessed me with your presence. Please know that I love you very much and respect you and will always be here for you while you are growing up and for always.

Happy 1st Birthday Deccy V!

Love Always
Aunty Carolyn
~xxx~

Control Questions

2006-04-21T06:33:00.000+08:00

Diabetes......it has been taking up a lot of my thinking time of late. Have I done the right thing stopping the insulin. I realise I have been managing fine without it but as I have said previously over the last four months things are changing and I have started to notice a pattern.

I seem to be fine for 6 weeks and then 6 weeks things will be pretty crappy and then the cycle starts again - does this mean that the honeymoon is coming to an end???? Who Knows????

I have noticed over the last month that I have become very tired and lethargic (thyroid is still borderline so not that) - could this be related to the Diabetes????

Should I consider just going back onto insulin now and getting back into a real routine of things before the honeymoon comes to an end or wait till I crash and burn again. May be that is what I am worrying about - crashing and burning - being in a country town where I still am not sure what would happen if something was to go wrong.

Would taking control of the Diabetes now give me some sort of ultimate control of how things would progress, etc. Or am I best leaving this alone and just waiting to see what happens????

Study

2006-04-19T07:01:00.000+08:00

After my birthday post, someone left a comment saying that you are never too old to study and I totally agree, but my problem is I can't make up my mind what I want to study.

All my teenage years I wanted to study Physiotherapy, but I knew that with my physical condition that would not be possible, so I looked into Pharmacy, but I suck at chemistry and I mean I really am dreadful at chemistry - I love the concepts and ideas behind chemistry, etc but I just can't get my head around it , so that became out of the question, until someone suggested Podiatry.

Everyone goes EWWWWWWWWWWWWWWWW, but you have to understand I LOVE and ADORE feet and I had it all planned, my business name and I even had the sign design (though little Miss A chewed it but the concept is still there) and was going to introduce alternative practices as well such as reflexology, acupuncture, etc.......I got into University, but just missed the cut to get into Podiatry by 7.6 points so I went into a Bachelor of Life Science in human Biology and after a year I could transfer into Podiatry. I got the marks but at the interview they felt that I would not be able to do it physically I was absolutely devastated - how could they say that, they had no idea of my capabilities and how I can do anything I set my mind too do....anyway that was the end of Uni for me - if I couldn't do what I wanted to do then that was it for me....

Now in my working life it is coming to a stage where I need to go back and do a degree in something and I just can't make up my mind in what. I want it to be something to do with health as that is a passion of mine - I have thought along the lines of nutrition, occupational health and safety and mixing that up with a business degree (though that aspect would bore me to tears but would be advantageous) but the more I look the more possibilities I see then I look at how long it is going to take to actually complete it and is it really worth it....

SIGH it is a tough one.......to study or not to study and if so WHAT??????

Happy Birthday To Me

2006-04-09T16:46:00.000+08:00

Well I have reached the big 3-0.......it got me thinking, I am not one of those people who cares too much about age etc and that it is devastating to reach this age, but I did have things in mind that I would of achieved by the time I was 30.....and I haven't, not even one of them.

By the age of 30 I thought I would be happily married and have one child or have one on the way and would have my own successful podiatry practice. I am very single, definitely no children and not looking like ever having the opportunity to have them, never got to do my degree in podiatry - didn't even complete the degree I was doing.....

One of my friends from high school sent me this beautiful card and she said she had been thinking about what I thought I would of achieved by the age of 30 and she said I might not have achieved that, but you are an amazing friend with a beautiful personality and you have achieved so much just not in the way you had planned and that is ok......and you know what it is ok, but still....

My birthday didn't quite go to plan, was just my Dad and I in the end. My sister, brother-in-law, niece and nephew flew down to Perth to get their house ready to put on the market and my mum got flown down at the beginning of last week for some medical tests and she has been kept in Perth for some further testing....I haven't met to many people up here yet I really do have to get over being so shy......and this cyclone weather has just about done me in I was in bed by 6.30am on Friday night just couldn't handle being in so much pain and just wanted to go hide under the covers.....on the diabetes side of things I found it quite interesting to note that when my pain levels rise my blood sugars rise even though I had nothing to eat and had only been drinking water they still rose......something to think about......

Atmospheric Changes

2006-04-06T11:15:00.000+08:00

The cyclone last week really did a number on my body with all the atmospheric changes.....at home everyone is in shorts and tops complaining how hot and humid it is while outside it is blowing a gale with heavy rain and I am huddled in the corner with a tracksuit on shivering and complaining how cold it is and pain just rolling through my body......

My body started playing up a couple of days before hand and was starting to feel better at the beginning of this week.....BANG this morning they have named another cyclone of the coast of WA - Cyclone Hubert. It is only a category 1 at the moment and it should skip over where I live but boy it is extremely windy and ominous-looking outside and it has been like that for the last 48 hours.....my body is screaming HERE WE GO AGAIN.....

Roll on the end of April is all I can say - the end of the cyclone season....

Cyclone Continued...

2006-03-30T15:25:00.000+08:00

Still on red alert, but looking like we will go down to yellow later this afternoon or early evening. The worst part of the cyclone has passed Karratha and heading to cross the coast at Mardie. We got quite a bit of rain and some nasty winds. We were lucky and didn't lose power, just some flickering every now and then. About 1,000 homes in the area lost power and presumedly someone lost their patio and it went into the powerlines.

Should be back at work tomorrow.....

Cyclone Glenda

2006-03-30T07:07:00.000+08:00

At the moment the Pilbara region of Western Australia has a Category 4 Cyclone of its coast. We have just been put on red alert, so thought I would quickly put up a post just in case we lose power etc. Please click here or here too keep track of it if you are interested in this sort of thing. This is my first cyclone experience....at the moment all is fine just very windy and some rain, it is the quiet times that are the scariest times when all of a sudden things just go silent and then bang it starts all over again.....

Take Care Everyone......

Carb Counting....

2006-03-24T07:02:00.000+08:00

another thing I think I need to start to get my head around.

When I was diagnosed I saw the Dietician/Nutritionist and she went through an average day of what I ate and worked out that I did not really need to change what I was eating but the timing of my meals - I would only tend to have one meal a day and she said I would need to have three meals a day.

Everything I was to consume had to be under 10 grams of sugar per 100 grams and under 10 grams of saturated fat per 100 grams. If it was a dairy product I could increase both sets of values to 15 grams and if it was a liquid it was to be under 1-2 grams.

After reading different blogs and forums I keep coming across carb counting and that everyone seems to be doing 'it' this way - it all sounds very confusing to me. As I said another thing to learn and something I will probably have to adjust to once the insulin is reintroduced - time to find some books I think....

Which Sports Car Are You?

2006-03-23T08:35:00.000+08:00

I'm a Honda S2000!

You live on the edge, and you live for the adrenaline rush. You don't need luxuries, snob appeal, or superfluous gadgets. You put your top down, get your motor revving, and take all the curves that life throws at you at full speed. So what if you spin out occasionally?

Take the Which Sports Car Are You? quiz.

Deccy V

2006-03-23T07:03:00.000+08:00

The other love of my life is my 11 month old nephew Declan Vaughan. He is a beautiful old soul who is developing a gorgeous personality, but boy does he have a temper. He has the most gorgeous smile and contagious laugh and has everybody wrapped around his little finger, even strangers and especially his Auntie Carolyn. He is not walking yet, but we are hoping he will be by his first birthday. He is slowly starting to say a few words, but still not able to say Auntie Carolyn, but we are working on it ;-D.

He turns 1 on 15 April and I am struggling to think of something special to get him for his birthday. I have already got him the usual toys etc. but I wanted to get him something special for turning 1. I got his sister a bangle which she will be able to keep for life (though she still has not been able to wear it - too big for her even though it was the smallest size). Any ideas?

We are holding a party for him at the local park and Lisa has been working on his birthday cake - she is making him a 3D train, so at the weekend she did a trial run of the cake and did the piped icing etc - it turned out really well so now it is just a matter of waiting for the big day.

Blood Test Results

2006-03-22T07:09:00.000+08:00

I returned to the Doctor's last night to get my blood test results and the usual suspect ones came up - thyroid borderline - test in another 3 months - bicarbonates and electrolytes all high - due to one of my medications - hormones - all over the place - need to up the medication I am on but I declined as I am managing as I am, but it is good to know if symptoms get worse I have an option so she was fine with that.

Hb1AC was 6.7 so that was a relief in one sense but an increase from the last one - last one was 5.9 and the one before that was 5.6. This time there was only 2 months between the test due to it being a new doctor etc she wanted everything repeated now instead of waiting another month. So the honeymoon is slowly coming to an end and she wants me sometime soon to do a week of testing religiously quite a few times a day to get an accurate record of what is going on as I have had some very high readings. Test again in three months time and if things have gone crazy before that time, then come back and she will call the Endocrinologist and do a phone consult over the phone in her office.

I really thought she was going to put me straight back on the insulin, but thankfully we are going to leave it a bit longer and see how things go......just means I need to get back into the swing of things and start taking things seriously and testing regularly and not just when I feel like it or feel funny.....

Hailie Bailie

2006-03-22T06:45:00.000+08:00

Hailie Jayde is my niece and the first child to enter the world to make me an Auntie :-D I never knew how much you could love someone until she entered the world and I am always saying boy I can't even imagine what the love for your own child could possibly feel like, because I don't think I could love someone as much as I love my niece and nephew.

Anyways back to Hailie Bailie - she is now 2 and a half years old, well a bit more than that (she will be 3 in August). She gave us a scare on Thursday night/Friday. The last couple of weeks she has been on antibiotics because she had awful mosquito bites that got infected. She stopped the antibiotics and then two days later she became unwell and was drinking obsessively and soaking her nappies. All Thursday night she was saying "Daddy drink please" and then would gulp down a cup of water and then go back to sleep and an hour later would say again "Daddy drink please" - by the next morning she could hardly walk and just wanted to drink continuously and alarm bells started going off in all our heads.

Straight off to the Doctors and straight in for some blood tests and urine tests, but the Doctor didn't think it was the beginning of Diabetes, but he says he always listens to the mum and would test anyways - he thought it was probably a virus of some sort. Being a weekend we couldn't get the results until the Monday and she had major ketones on her urine, but the Doctor put that down to dehydration and said that the blood test results showed that she had a bacterial infection caused from the bites and that she had an allergic reaction to them - so back onto another course of antibiotics - but he was concerned about her weight - three weeks ago she weighed 11kgs - Friday she weighed 9.5kgs and on Monday she weighed 7.5kgs.

Hailie is very petite in weight has always been that way - she is getting quite tall now, but does not put on any weight - doesn't drink much and doesn't eat much.....my sister has tried everything to get her to eat more and does frequent small meals during the day, tempting her with different types of food - she is not a fussy eater and eats very healthily - loves her fruit and vegies etc, but still enjoys chocolate and ice cream or should I say ADORES chocolate and ice cream.

On the Friday after seeing the Doctor, she went to the Pharmacist to look into the children's chewable vitamins, but they say Hailie can't have any until she weighs 13kgs - she has never weighed 13kgs. He suggested a glucose powder to add to her meals etc which should help fatten her up - so we have been trying that.

On the Monday the Doctor said that my sister needs to start giving her protein shakes but my sister is like giving a 2 year old protein shakes - but she is giving it a go - but it took Hailie 90 minutes to drink half a cup of the stuff. Lisa made it fun for her and got her to help make a banana smoothie and they put ice cream etc into the blender together and Lisa put the powder in without her seeing and she just would not drink it and my sister had to bribe her to drink just half a cup.

Does anyone have any ideas to help a 2 year old eat and drink more? She is otherwise very healthy, active and happy child and she puts on some weight and as soon as she gets sick it comes falling off again - I mean she is still in size 0 clothes.

Aqua Time

2006-03-17T06:32:00.000+08:00

Last night I ventured to the local swimming pool to take part in an aqua class (water aerobics). It was a very interesting experience - outside pool 32 degrees Celsius and bugs galore. As soon as I got in there I thought I was going to die it was so cold (I don't do anything cold) and my sister said no it is lovely, it is like a warm bath - I have no idea what planet and pool she was in - trust me it was cold.

The instructor had her headpiece on and started up, everyone jogging on the spot, get those knees up, I want to see white wash.....Now move to the shallow running down the pool with those knees high and coming out of the water and when I say turn to come back you turn quickly so you get the most resistance - I am going to work you ladies.....but first if anyone of you is pregnant or has a medical condition that I should know about please come and see me now.......so two ladies went ahead of me as they were in different stages of pregnancy and then I went up and said ok I am on crutches and have RSD and she just looked at me and I just laughed and said I am fine I can do this and I know my limits, I have done heaps of hydrotherapy etc before blah, blah......I didn't go into the Diabetes side of things as I thought that doesn't count as I am not currently taking insulin (but that might soon change, will leave that for another post)....

Back to running up and down the pool and as I was running someone called to me hey you have a friend and I just looked at them and raised my eyes and they said on your bathers - I looked down and there was a grasshopper on me - he/she was a pastel green in colour and was just satisfied to sit on my chest and go along for the ride so I let him/her do that until I started imagining it crawling where it shouldn't crawl and then went to the side of the pool and let him/her off the ride.....

The class got quite intense at times and I didn't enjoy doing the burpies (how do I explain this one) - it is where you dive forwards your legs follow but you have to then tuck them up into your chest - not a good explanation, but you should try doing them in the pool - and then do them to your side - I swallowed a bit too much water on that one and then there was the kick board - kicking up and down the pool frontways, then on your back and then on your side - for me extremely difficult and my legs are not the best and not being able to use your arms that was a pretty long, and I thought neverending exercise, but I made it in the end....

I thought this morning I would be suffering for it but have pulled up really well and my blood sugar was perfect this morning 6.7 and it hasn't been that first thing in the morning for quite a while....so I am going to give this class ago it is three times a week but I am just going to do 2 times a week for now and see how I go.....

My First Week In the Pilbara

2006-03-14T06:34:00.000+08:00

My first week of work went great. I was extremely nervous about that first day as I said in a previous post, especially as I couldn't speak to anyone beforehand because my Supervisor was on annual leave and would not be back until the day I started...they didn't even blink at the crutches...my Supervisor just asked what I had done to myself so I kept the explanation very brief and too the point and he was fine about it...the next day he casually says so how long are you going to be on crutches for and I said well it has been about 11 years now, but I am hoping that being up here in the warm climate, etc. that things will improve and I will be able to get off them. So all is well.

The job looks like it will be interesting, especially as I will be dealing with a lot of other hospitals that are in remote areas etc...the people here are very friendly and accepting.....

I went to find myself a GP up here, and that was an interesting experience as well. I went in there and said hi and explained that I had just moved up here and said that I would be her nightmare patient and she laughed and said give it to me. So I started listing all the problem areas and she was like OK lets take one at a time and go through them individually and I just laughed and said sure.

We started with the RSD (reflex sympathetic dystrophy) and she had all these plans for me and I was like no you don't understand been there done that not going there again. I am happy with how I am at the moment and I will let you know if things change and I can't put up with things any longer and she was satisfied with that.

We then went on to the PCOS/endometriosis (no one can make up their mind what is wrong with me- seem to have bits and pieces of both conditions - lucky me)....I said my Gynae in Perth was happy for me to consult with him over the phone if I had any problems or questions and when I am in Perth he will fit me in for an appointment and he would write her a letter explaining my situation and treatment regime. She was happy with that.

Next was the Diabetes...oh boy that did not go down well, she says no you can't have type 1 because you are not on insulin so you must have type 2...so I explained that yes I do have type 1 but I am honeymooning and was on insulin for 8 months but never had to change my dose was just on 8 units of novarapid 3 times a day and 8 units of protophane at night and I had no idea I was low because the symptoms are exactly what I feel normally with the RSD so I was putting myself at risk so chose for now to not take anything as I was honeymooning and seemed to be doing ok without it, yes I do get some nasty readings occasionally, but I am very strict with myself in what I consume so that helps some as well and would continue that way until I had no option to go back to being on the insulin. Still not sure what she thinks about all that but we will see. She has organised a heap of blood tests testing just about everything you can think off and I have to go back and see her next week and see where we go from there.

Next I told her about the blood clots in my brain and that got her attention and she said boy you are very lucky to still be here. So will we see how things go with her. She is actually very good - she is young and very willing to listen and if she is not sure of something than she will go find out she doesn't just let things go - so I am thinking that is a good thing.

It is great being with my family again, though stressful all being under the same roof until my sister's house finishes getting built and me finding my own place. Being 29 and living with my parents just doesn't feel right to me at all :-) The cuddles and kisses from my niece and nephew make everything worth while though - I just love being an Auntie.

Yes I Did Arrive

2006-03-10T06:44:00.000+08:00

Just a quick message to say I did arrive safely and all is going well and I will try and write more tonight or over the weekend and let you all know how my first week at work went, etc......

Offline

2006-03-01T04:52:00.000+08:00

Ok have been up all night trying to finish all the packing before the Removalists arrive and I am still not done......they arrive in 2.5 hours......so now I am going to put the puter to sleep and disconnect all the wires......bye for now.......

Packing

2006-02-28T07:45:00.000+08:00

I have rediscovered that I dislike packing immensely!

It is not the physical nature of the process, not the organisation structure that needs to be in place, not having help (though I have plenty of offers), not having enough boxes, etc.......it is the emotional rollercoaster that you hop onto when you decide to uproot yourself and move on.

This is a very big step for me.....I am going from being comfortable and familiar to the unknown....the only thing that I know is that my family is there so I have that support, but everything else is a very big step.....I have an extremely low self-esteem and low self confidence so this is a chance for me to start afresh and grow as a person and move forward......but still.....

Anyways packing and the emotional rollercoaster - going through all your possessions it brings up a lot of happy and sad memories.......can you believe I found assignments from highschool, what is with that, why do I still have them.....I found some treasured photos and jewelry that I thought I had lost......I also came across stuff that reminded me of different thing that have happened in my life, some that were not too pleasant.....I started thinking what do I get rid of and what do I keep......do I really truly need this???? It was like I was throwing a part of me away, but at other times it was quite cleansing......

Over the past few days I have changed my mind so many times about this move and new job that yesterday morning I decided nope that is it I am going to call up my old work (boy that sounds odd I only left there on Friday) and beg for my old job back and things can go back to normal and I can go back to my secure little existence.....and then the phone rang......

It was my sister and she was saying are you excited, how did it feel this morning to get up and not go to work and I grumbled back that I am still working my butt off packing and she goes I know - it is an awful job, remember that I did it less than a year ago. Then she says that someone wants to talk to you and it was my 2 and half year old niece Hailie - and she goes Hi Auntie Carolyn and chatters away - I picked up a word or two to be able to follow what she was trying to say (she has moved from 2 worded sentences to three worded sentences now - very cute) and then she was handing the phone back and goes love you and then says see Carolyn soon and my heart melted and I was like yes sweetheart I will see you on Thursday and I hope you have those hugs and kisses waiting for me.....

So I keep on packing and the dislike for it keeps growing - less than 24 hours now until the removalists arrive - UGH panic is starting to set in.......

Question of Disclosure

2006-02-24T05:18:00.000+08:00

When I applied for this job, on the application form there was the standard question do you have a medical condition or disease that would effect your capabilities of performing the job. I always struggle with this question - do I have to disclose my medical history or not and usually I tick the 'no' box because I have always done administration positions, being on elbow crutches has not effected my job performance and has not stopped me performing any duties that is expected of me or that is outline in the Job Description Form (JDF).

This time it was a bit different - the Diabetes is new, blood clots are new and I know that I am not back to 100% yet from all that happened then I am at about 80% so I questioned myself what do I do? I spoke to my work, which is really handy because they deal with work safety and also labour relation and consumer protection so they know all the ins and outs of this and what I have to disclose etc. We went through the JDF for this new position and they said there is nothing listed there that you can not do, so you do not need to declare anything......they are an equal opportunity employer so therefore you will be fine.......so I ticked the 'no' box.

I sent of my application and was called less than a week later for an interview, but they said it would be a phone interview because they are so far away (I was hoping they would fly me up so I could spend the night with my family :-)). I did the phone interview and deep down I thought no I won't get the job because I have no self confidence and I had been warned that it would be extremely competitive and that if there was someone already up there they would likely take them, but I got a phone call a few days later telling me I had been selected for the position. I was over the moon and you still can't wipe the smile of my face, I get to be with my family again.

Since then I have been panicking and having self doubts - they have not met me face-to-face, they still have no idea that I am on elbow crutches.......

Will they freak and panic when I walk through the door on the first day?

Should I get in contact with them now and declare this?

Does it really matter, should it really matter?

The reason I am all uptight about it is that the HR department rang me up on Wednesday asking if they could email a copy of my contract so I could have a look over it before I arrive so if I have any questions I can let them know when I arrive. I am like sure no problem and then I thought I would ask about dress code etc as I would be working in a hospital was there a uniform or was I expected to wear certain colours?, etc. She said it is totally up to me there is a uniform but it is personal choice as long as you look neat and tidy and that you wear appropriate footwear everything is ok. She also said that because I will be working in the Finance Department in the Maintenance and Purchasing section I would be moving boxes etc so it is up to me. So I have been stressing about this - there is nothing in the JDF about moving boxes or any physical activity - I mean I can do all that, I do all that now I still move boxes etc. and I work for WorkSafe and they make sure I do things safely, but they know me, these people don't - so are those questions above relevant????

People here are saying no I don't need to say anything. If they needed someone who is physically capable they are an equal opportunity employer they know that they have to stipulate it in their JDF if there is anything that would prelude someone. My Dad works for the government and he has been on interview panels that have done phone interviews and he said if you think about weight - how is the person doing the interviewing know if the person weighs 190kgs or 54kgs - it should not matter.

Sorry for going on and on, but it is really bothering me......

Moving

2006-02-24T05:04:00.000+08:00

Last week I was offered a job, which I accepted, which involves me moving 17 hours away. This is awesome because I will be with my family who have moved up north in the last 2 years and I am missing them dreadfully, especially not being able to see my niece and nephew growing up. I have been waiting 3 years to finally get a permanent position in the Government......it gives me a bit of security, especially considering my run of health problems of late, I don't need to stress that if I need to take some time off that I won't have a job to go back too, etc.

It has all been a rush because I start the new job on 7 March and I leave Perth on 2 March and I finish my old job today. So much to do in such a short amount of time. Everything was going perfectly and then Wednesday I got a phonecall from the removalist company telling me they could not move me on Wednesday that they had overbooked and mine would be delayed until the 7 March. I was dumbfounded in what I was going to do because I needed to find someone else to do it in less than a week - thankfully I have found someone to do it - more costly but it will be done when I need it to be done - so everything is back on track......I hope.....

I have only my car to organise and book my flight, but leaving the flight late as possible just in case......oh and finishing packing a 4x2 house......

Walking Medical Museum

2006-02-22T19:59:00.000+08:00

I was 15 years old and attended a sports carnival at high school, but I was accompanied with a letter from my parents saying that I was not to participate in any events. I have hypermobile joints and was always rolling my ankles and knees. I was also a competitive artistic rollerskater and had my proficiency testing coming up in 2 weeks time and could not afford to injure myself.

As they day went on I got talked into competing in a novelty race and they needed just one more person so me being me said sure why not........it was a 20-legged race what could go wrong??? Ten of us had all our ankles tied together in a circle and we had to go 50 metres and the first one to cross the line would win.....we never crossed the line we all fell and I was on the bottom of the pack with a sprained ankle.......Oh boy did I hear all about it when I got home.

Anyway I did all the usual RICE treatments, etc but after a week and a half the ankle was deteriorating the pain was so intense and my foot was freezing cold. I went to my GP and he ordered x-rays to check for fractures - nothing and sent me for physiotherapy. I did that for 3 weeks and it just got worse and worse until the Physio refused to treat me anymore because she was sure there was something wrong.

I was sent to a Sports Doctor where he thought I had RSD (Reflex Sympathetic Dystrophy) and sent me for a bone scan and the Radiologist agreed with him. From there it has been another journey in itself. For me it has spread nearly full body now and not much can be done for me now, or nothing that I am prepared to do, but I never lose hope.

As you can see I have had an interesting health journey in this lifetime, hence the title of this post, the name my GP gave me after all I went through in the last 14 months. How can one person have so much go wrong and such obscure conditions. Obviously this is what I was supposed to go through - it has definitely made me a stronger person and someone who appreciates all aspects of life..........don't get me wrong sometimes I do go into the 'Why Me' scenario, but not so often these days.....it is all good :-)

Denial = No Insulin

2006-02-19T10:05:00.000+08:00

For the next 6 months I did everything right - tested four times a day, ate three meals a day, stuck religiously to eating the right foods, giving the injections and I had no problems with coping, etc and just got on with it and realised that this was just the way things were going to be and that was ok.......I did all the crying and the why me when I was first diagnosed, etc. Seriously the only problems I had was the eating three meals a day I am not a regular eater so that was challenging, but I knew this is what I needed to do to keep healthy so I did, oh and I didn't like the finger pricks my fingers were getting very sore, especially as I could only use one hand.......but again I knew it was something that I had to do so I did it.

My three montly results were perfect and I mean they were in the fours and fives and I never had to adjust my insulin doses I was on 8 units of Novarapid three times a day and 8 units of protaphane at night - easy.......but then I started to become complacent where I skipped a meal here and there so therefore I didn't take the insulin and my levels were still fine so then I thought ok why don't I go a day with out taking any and see what happens nothing all was fine, and that day turned in to two, etc, etc....till i had gone nearly two months and I was coming up for my Endocrinologist appointment and was panicing thinking oh no what am I going to do they are going to kill me but my result was fine i was in the low 5's, and they said excellent you are stll honeymooning and I said yep and I am not taking any insulin and that did not go down to well but I explained my theory and they were fine but i must keep an eye on things.

I went for my latest check up in January and my test was 5.9 so slowly creeping up and they asked how things were gojng and I said fine, and i still keep to eating correctly etc, but I had to admit that over the last week that my levels had been slowly rising especially in the morning and the two hours after a meal......so I have been told to keep a closer eye on things and look out for symptoms and at the first sign of trouble to call them directly and they will sort things out for me.....

So as of now my levels are still slowly rising and I will have an occassional nasty 20 plus reading but then by the next day it is fine again so I am thinking this honeymoon time is slowly coming to an end and I will have to get over this denial thing and switch my mind back into the right mind set and appreciate that I have had a nice intermission, but there is going to be no more of them......SIGH......but if only..........

My Brain Is Not In My Little Toe Part Two

2006-02-19T09:34:00.000+08:00

I went by ambulance to Royal Perth Hospital and my Mum and sister followed by car and I arrived there about 5:30pm and was met by the Neurological Registrar who I have to say was an obnoxious and arrogant Doctor. Seriously, he interrogated me for nearly three hours and asked so many questions in between me throwing up and screaming at him when he was doing his neurological examinations (which I understood he had to do, but it was the way he went about it when he knew I had RSD/CRPS nearly full body).

My Mum kept trying to step in and answer the questions for me and he started interrogating her as if she didn't know what she was talking about. It was like he didn't believe there was anything wrong even though he had the scans sitting in front of him. He decided to admit me but said he didn't think it was necessary to call in the Radiologist to do an emergency MRI. I was past caring anymore I just wanted the pain to stop and just wanted all the bright lights to be turned off and to be left to sleep or die or something. It was 9:45pm then and I told my Mum and sister to go home, there was no point hanging around.....Mum refused to leave at first but the nurses eventually talked her into leaving and they promised to call her if there was any developments.

At 10:30pm the Registrar came back in and said that he had spoken to the Consultant and he wanted an MRI done immediately and he rolled his eyes at me - I couldn't believe it....so at 10:45pm I went for my first MRI and OMG that was not a pleasant expereince - the noise and vibrations was horrendous and trying to stay still and calm - and half way through the CD they were playing stopped so the noise was more intense and then the Radiologist couldn't talk to me so I had no idea how long I was going to be in there - it was absolute torture.....

11:45pm I was finally taken to the Stroke ward and started on a heparin drip and it was a long night because they were doing neurological checks every 15 minutes. I eventually saw the Neurologist late morning and he was the nicest Specialist I have ever had the pleasure of meeting. He sat down and explained that I had 4 blood clots in my brain (Cerebral Venous Sinus Thrombosis) and they didn't to start dissolving them and work out why this had happened. Straight away he goes whats wrong with your eyes - and I explained the blurry vision and the shimmer effect and the intense pain and he looked at his Registar and said you didn't tell me about this and they left my room.......after that day the Registar treated me with a little bit more respect.

In the end they thought it was a combination of me being on the contraceptive pill and because of the Diabetes - they explained that because we don't know how long my sugar levels were out of control that having high blood sugar levels causes the blood to become thick and sticky and this had caused clots to form and I was very lucky to be alive. I was in hospital for just over 2 weeks and had a small stroke which caused right side weakness and effected my taste (everything tasted like fish and i mean everything.....btw I hate fish)

While in the hospital I saw the Endocrinolgy team and they said they got the test results back and it was definitely Type 1 Diabetes and I also showed positive antibodies for hypothyroidism so they would need to keep a close eye on that as I am jsut borderline at the moment. I experienced my first hypos while in the hospital - well apparently I did I had no idea it was happening - they were testing my sugars that many times a day and I remember one occassion I was on the phone to my Dad, anyways I stuck my finger out for the prick and the nurse went into a panic because it was 1.7 and I am like what and she said you have to get off the phone now and drink this stuff (some glucagon drink) and I am like why I feel fine and she says well you are not fine.......and this happened quite a few times while I was there and I had no idea each time. It was something I would have to keep an eye on in the future......

My Brain Is Not In My Little Toe Part One

2006-02-17T16:35:00.000+08:00

I was carrying on as normal, while adjusting to having Diabetes and went straight back to work...all was fine except my eyes just wouldn't improve, still experienced blurry vision and having this shimmer around everything and having intense sinus pain and headaches.

I am not a headache person, the only time I get headaches is when it is time for my prescription to be changed in my glasses, which happens approximately every 2 years. On 21 December 2004 while at work my head was going to explode (seriously it was going explode, I was absolutely positive it was going too). I had tears streaming down my face and the Executive Director took one look at me and got someone to drive me home in her car and she said you are not to come back until you are better this time.

Back to the Doctors and more antibiotics saying I had another sinus infection. Christmas came and I was feeling better, but Boxing Day I went down hill again and spent the day on my sister's couch while they were entertaining visitors outside. On 29th when I was supposed to go back to work I couldn't do it and called in sick and that night, it took me that long to be able to manage to make it to the Doctors and he sent me home with another course of antibiotics and gave me a combination of an anti inflammatory and some pain killers and said if it doesn't work within an hour come straight back (this was an after-hours clinic at the local hospital). After an hour I thought that there was a slight improvement that i went back to bed and crashed.

1:30am
OH MY I thought I was going to die, my head was passed explosion point and I was seeing red and stars and started throwing up... all I can say is I have never ever felt anything like it in my life ...and I live with pain everyday, but this was just beyond my limits.

My mum was down from Karratha and staying at my sister's house so I managed to crawl to the phone and call her and said to her I know it is only a headache and I will feel like and idiot but I think you need to take me to the hospital.

2:30am
Mum arrives with my sister and they take me to the local hospital, where every couple of steps I was vomiting. I was taken straight through and they were giving me all sorts of medications but nothing would stop my head from hurting.

9:00am
The Doctor decided to do a CT Scan as no one had done one to check my facial sinuses. I went in and had that done and thought it was real strange when the Radiologist asked how long I had been like this and I just groaned and said that I have had sinus infection after sinus infection since October and a headache that has just grown and grown and they panted my hand and said you poor thing and got wheeled back into Emergency.

After about 30 minutes the Doctor sat down on my bed and said that they had found something in the CT Scan and I automatically said you mean I actually have a brain. He laughed and then got all serious. He said he thought I had an aneurysm and would need to have surgery, but they wanted to do one more test.

10:00am
They sent me back for another CT Scan this time with contrast. Back to Emergency. After about another 30 minutes he said no now we think you have a blood clot in your brain and you need to stay very quiet and stay calm and I am like ok. He says you are not reacting and I am like you said to stay calm so I am staying calm and then I looked at my mum and she had tears streaming down her face (she is a registered nurse). He said that they needed to send me up to Royal Perth Hospital in the city by ambulance where a Neurologist would meet me in Emergency.

The Beginning Part Two

2006-02-17T04:54:00.000+08:00

I arrived at my GP's office and didn't have to wait too long. The first thing was the finger prick test - the second time I have ever had one in my entire life and I flinched and boy did that 10 seconds feel like a lifetime and it read HI and I am like what does that mean and he said that you are so going to have to get used to having those finger prick tests. He passed me a urine specimen jar and asked me to give a sample so I went and did that while he saw another patient and I gave the sample to his wife who is a nurse who tested it for me while I waited in his other room. Two minutes later they are calling my sister and getting her to rush me to the hospital.

Arrived at the Emergency Department of Royal Perth Hospital and gave them a letter from my GP and got shown straight through. They called for an Endocrinologist consult and I got their Resident Doctor and boy did I get the run around from him over the next 3 hours. I was questioned and questioned about being 28 years old and because my mum had recently been diagnosed as type 2 then I had to be and the nurses around my bed were like no you need to get moving on this and get some insulin into her and she needs to be moved to Resus and I was like hang on a minute I am perfectly fine thank you just keep the water flowing and give me whatever I need and I am outta here.

The Resident was extremely flustered, I found out later that he had only just recently started this rotation and was still getting the hang of things. Anyways I was admitted and had drips coming out of my arms and feet (I have really bad veins) and was told you have Diabetes but we don't know what type. It was 2 December 2004. The following day I met the Registrar and she was awesome and explained everything very clearly and she said that they had taken tests to check for antibodies and they would not get the results for a month??? They were treating it as Type 1 because of everything I had been through over the last couple of months leading up to it having a virus etc and the sudden onset, loss of weight,etc.

That afternoon I met the Consultant and we had a long talk and after discussing my Mum's history that she has an autoimmune disease (Primary Billiary Cirrhosis) which had led to her developing hypothyroidism and then to developing Type 2 Diabetes and now Rheumatoid Arthritis - they are 99% sure I have Type 1 because I have a 20% chance, as well as my sister, developing an autoimmune condition and he says obviously this one is going to be yours.

I was in hospital for 6 days where I went through their education program etc, and got things started........It was quite an emotional time and the Registrar was very helpful with that and would sit there and answer my questions and just chat in general for as long as I needed to get me through that initial shock.....

Once home I didn't have too many troubles to adjusting, except to the eating three meals a day I am not a regular eater, so that was my greatest challenge........the journey continues to the end of December when things just spin out of control again.....

The Beginning Part One

2006-02-16T04:34:00.000+08:00

It all started at the Perth Zoo - who knew visiting the zoo with family and close friends on a beautiful, very warm Spring day would be the start of my diabetes journey.....I was going backwards and forwards to the bathroom (did I say this was scarey because I do not like public conveniences and tend to avoid them at all times, but oh my today was a different story) while walking around the zoo and no one could keep up with the amount I was drinking.......in the afternoon I bailed on the walking and parked my self on a park bench in the shade and layed down with my 1.25 Litre bottle of water and downed that while the others continued and started to wonder why everything was blurry and had a shimmer around it out of my right eye - I put it down to that it was an unusually hot day and I had been really ill about 3 weeks earlier with a nasty ear and sinus infection and some sort of weird virus - residual effect......yeah thats it.....

The week went on and I just didn't improve and by Wednesday at work I just said I can't do this anymore and booked myself some time off to get myself better thinking I let myself get run down........By Friday my face was sore with pressure, my ears hurt and my right eye was really getting worse, my GP put me on more antibiotics saying I had another sinus infection. He gave me a double course of a strong antibiotic and by the following Friday I had no improvement and went back and he sent me to one of the main hospitals emergency departments thinking I needed IV antibiotics as the sinus infection had invaded my eye. I was given all these tests and they didn't think it was an eye infection, they thought I had optical neuralgia and the Neurologist sent me home that night and said to come back on Monday and they would do a neurological test to see if that was it.

I came back and did the test and got a phone call later in the day to come back the following day to see the Neurologist and get the results and it was negative, but he said that he wanted to do an MRI scan just to be sure there was nothing else there but it might take a while to get an appointment (three months in the end). He then noticed that when I was in Emergency that I didn't have the usual standard blood tests and urine tests - why not - I said probably because I was sent everywhere for all these different eye tests, x-rays etc it was missed so he sent me off to get that.

Two days later he called me at home at 8:30 am and said you need to go and see your GP urgently NOW, your blood tests showed something wrong with your glucose levels. So I said sure, but I don't think I will be able to get an appointment because he only works for half a day on Thursday and he said no you don't understand you ring up and say you have to see him immediately. So I rang and got an appointment for 10:30 am and the journey began......

Outlet To Express Me

2006-02-15T11:55:00.000+08:00

I have been lurking for quite a few months reading different blogs, especially ones to do with Diabetes as this is a relatively new development in my life. I thought it was about time that I gave myself an outlet to express what I am feeling and going through.....please bear with me in future posts as I explore what is going on inside this head and body of mine.....