Cracked & But Not Scrambled...YET

Yep its been a long time and my excuse is that i have been very busy. But the real reason is that i have the attention span of a gnat! and so the novelty of blogging wore off, but now that a friend reminded me about my blog i decided to get back into it.  Probably is as therapeutic as seeing my shrink and a whole lot cheaper! Not that i don't value dear Daniel my shrink - dear boy sits there and listens to me rant and rave, doesn't blink an eyelid when i say the EFF word and offers me coffee and tissues. What more could a girl want??

So i guess an update is warranted.  I cant be bothered going back and reading my previous posts so if i repeat myself..too bad :)

Now, in no particular order, here is the latest and greatest info on Christies Condition:

• admitted to Children's Hospital @ Westmead for cystogram, pyleogram etc - results normal except for some 'vaginal pooling'  (shhhhh don't let her know i said the V word .. she gets a bit embarrassed) which just means that when she pees it kind of runs back into the Vag and can cause a UTI. solution = sit backwards on the toilet to pee.  Now in theory this is easy enough.  Reality is a little diff however.  Try being a tiny 11 yr old, having to pull ur dacks off each time u need to pee, spreading ur legs around a big, hard edged loo seat; when ur busting (remember she can go from not needing to pee to needing to pee faster than a race car goes from 0-100k's!)  and add to that the next problem she has:

• Greater trochanteric bursitis in BOTH hips - check out the link for details, but basically its extremely painful and can last for a long time.  She has been prescribed Naproxyn for the pain and it helps but if she forgets to take it (or more to the point I forget to give it to her) - she sure suffers! So when going to the loo, trying to sit backwards is very very painful and not always something she remembers to do (i wouldn't either if it hurt) 

  Greater Trochanteric Bursitis

•  Most recently she has been advised to have braces due to 2 of her adult molars having emerged rotated 180 degrees, her bite not meeting and one tooth behind the other. Now if it was purely for cosmetic reasons i would say hellllll nooo... BUT because it can cause quite a few problems to leave them the way they are... well we wont be going on an overseas holiday for the next... rest of our flipping lives - omgosh.. quote number 1 is $8000. Needless to say, we are getting a second opinion.  I may look like a cow but i ain't a 'cash cow'.

•  She has also seen the cardiologist and her heart is just fine.   

•  Gastroenterologist - diagnosed  GERDS & Irritable Bowel Syndrome but was not keen to do any biopsies due to the risk of bleeding with people with Ehlers Danlos.  Medication prescribed for both issues.

• Tested for Celiacs - negative thank God cuz i think that woulda been the straw that broke the poor camel (or cow)

• another UTI diagnosed today - more antibiotics

• Vitamin D levels only 35 - should be at least between 80 and 200. So Vitamin D tabs prescribed

• Distance Education started about a month ago - loving it!

• Physio/hydro yet to start but appointment booked for next week

Now.. to the cracked but not scrambled part.. feeling very very overwhelmed, stressed and about to crack!  I feel as if one more person asks something of me i will just implode. Its taking all my self control and patience not to screech like a banshee at the kids.  Poor Declan is feeling rather left out and ignored and unloved because of all the attention Christie is getting. So when he says 'mum please can u make me a hot chocolate? i try not to flip out and tell him to make his own damn drink!  Even at 15 he is still my boy and i know he craves my attention. I just feel TOTALLY SUCKED DRY.. not another thing to give..   I saw my shrink which helps but the main problem is that my memory fails to recognize the need for it to remember to take my bloody medication on a regular basis.. not regularly IRREGULARLY!  I have missed it, doubled up on it and i can tell i am going downhill rapidly.  Desperately need some time out and i am my own worst enemy here because IF i get the opportunity to have 'ME' time i cant stop worrying about her, or i am too damn tired to be bothered doing anything.  Sadly, when i get like this i tend to withdraw heaps and my world consists of me, my family and that's it. oh & Face book. which is an awful thing cuz my friends neeeeed ME in their lives :)  but seriously, i need to get my s*** together, take my meds, stop eating choc and get back into the real world. 

As my dear friend Cathy says - "its ok to visit the pity paddock, but don't move in".  

Aquatic Adventures

Firstly i have to say i am in love...with a Dugon!  What an incredible creature.  Ugly. Gorgeous at the same time.         

Dugons at Mermaid Lagoon - Sydney Aquarium

Feeding Time - between 80 & 90 KILOS of lettuce every day!

We met up with Suzi & J at their home and followed them into the city (i was scared i would get lost!) Gorgeous day for our adventure to Sydney Aquarium and apparently 75% of Sydney's population thought so too. I cant get over how big Darling Harbour is compared to what it was like when i last was there.  We were so excited to be there and it was lovely to watch Christie be excited about something.  Mostly i think we were excited about seeing the sharks but it seems that we were mostly in love with the Dugon.  Sharks were interesting and kind of scary, but the Dugon was just adorable!  You really must go and see the mini site about the Dugons at the aquarium.  I am not sure which Dugon the above photo is of.
The Aquarium had some amazing displays, built entirely of Lego!

two beautiful Mermaids

Over 1.5 million Lego bricks were used to make the models at Sydney Aquarium and Wildlife World. That is a heck of a lot of Lego! Wonder what they're going to do with them all when they have finished??

Jack & Christie

It was really worth the effort to visit the Aquarium and next time i think i will plan to explore Darling Harbour further!

Kids - Funny things they say & Do

All kids say the funniest things at some time in their lives.  I know my lot did, and STILL do. They also have had some really cute names for things.

These are the sorts of things i want to remember. For some reason its easier to recall the  BIG things in life & these precious little moments can fade away.

For some reason my memory decided to go on strike for several years and what i recall of the kids early years (especially Christies) is very limited.  Here, i hope to record memories as they 'pop' into my head.

My most recent 'funny thing' was said just last night. We were out for dinner and the menu said Guinness Meat Pie.  My darling Hayley girl was horrified because she thought is said GUINEA PIG PIE!!  

When Declan was a toddler he used to call Cordial 'diddyal'.

The kids will argue with me as to which child this was and i say it was Hayley, who when approx 2yrs old poked  her great-grandmas cat in the butt hole and said loudly 'BUM'.... the cat wasn't impressed but i thought it was pretty funny.

Hayley was wanting to know something about the washing machine a couple of years ago and came out with  "the washer of clothes" because she couldn't recall what it was actually called! 

Christie approx 3yrs, when asked if she wanted toast for breakfast:  "no actually i prefer weetbix".   wow, i thought, big words and correct context and all. To this day she has a wonderful vocabulary and comprehension ability.

At the moment Christie, when asked to do something says "no thank you" which when u think about it is much better than straight out telling me NO! and i always find myself simply accepting that she doesn't want to do whatever it was!

As i remember things i will continue to add them...so watch this space

Midnight Musings....and munchies

Why is it that at this time of night (morning actually 1.21am) that my brain cant switch off and my tummy grumbles??  Brain has NO problem switching off in the middle of the day.


I have many things on my mind, least of all can i make toast without waking the entire household? probably not.


The upcoming trip to Sydney this Sunday has me a bit excited. Just like a kid. We will be exploring the Sydney Aquarium. I know to some its just a bunch of fish type creatures, but i think some of them are beautiful and some ugly or scary, just like us humans i suppose. Sharks fascinate me up close, but only because of the knowledge that there is a pretty huge, thick chunk of glass between those sharp fangs and my delicate self.

Another Piece of the Jigsaw

You can't see my pain but i AM hurting - PLEASE believe me...

Sadly so many people do not believe Christie when she says she is hurting. Believe her. She IS. Just because YOU cant see it, it doesnt mean the pain isnt there. 

I believe that it is from lack of knowledge that some of the people in her life, be it friends, family or the medical profession, dont believe she is hurting as much as she says. I have heard people say to her or in hearing of her, that she is simply seeking attention, or that its anxiety that is causing her tummy pain, or its psychomatic, she must be getting bullied at school, or there are problems in her home life. Some one even said in front of her, that perhaps she is being abused. Her pain IS real. Her feet hurt, her ankles, her knees, her hips, her back, her shoulder blades, her neck, jaw, shoulders, elbows, wrists and fingers. She has chest pain, tummy pain and headaches. Most of these, to some degree, every single day of her life. Her worst pain at the moment is in her hips. She has trouble getting to sleep because of the pain and constant aches. Imagine laying in bed trying to get to sleep when u hurt like that.  I know I couldn't. The best we can do is give her panadol and try to distract her mind with reading, music, or a quiet movie, until she falls asleep, usually from sheer exhaustion.  Most nights she ends up sleeping in my bed with me for the comfort and warmth. 


I have found some interesting info and video clips on the internet (what would we DO without the good old net??!)


I think its worth taking the time to watch these and have a bit of a look at some of the sites. Perhaps it will make it a bit easier for you to understand what Christie is going through on a daily basis. But she doesnt need pity, she needs understanding, love and friendship. Most of all, she needs to know that YOU believe her. Remember however that not all symptoms affect all people. Everyone is different.

Nothing Hurts in My World (youtube)

Dying To Live (youtube)

Ehlers Danlos: A Mystery (Discovery Health - YouTube)

Living with EDS

The Education of a Young mind - and an old one!

Who says you cant teach old dogs new tricks (not that i am a dog!).  Finally Distance Education is closer to being a reality!  All the paperwork went in today. We did the meet and greet and checked out the libary etc. Pretty awesome place. The building is really old and built 1877. Its gorgeous.  I would put a picture here but its protected by copyright and being the good person i am i dont want to do the wrong thing. So if you want to have a gander click on the link     http://www.queanbeyp-d.schools.nsw.edu.au/

I think Christie will blossom. The school work is structured especially for her, not a classroom of 25 other kids.  They have 'mini school' which she will attend with a small group of other kids who are enrolled in DEd, as well as some 'regular' kids. This will give her the socialisation aspect of school.  They also have special activities, excursions and even camp. 

I too will have to learn in order to help her learn.  Maths is the one that i am nervous about, not that i am bad at it, but that they do it so different these days! 

We have some catching up to do but i think she will be just fine - so long as she doesnt sack the teacher lol

Me, Christie & Ehlers Danlos.....continued

It's been an interesting couple of days to say the least. I have come to the conclusion that the services at the hospital leave a lot to be desired. The doctors (& nurses) are very overworked and staffing levels way to low.  The government really needs to step up and find a way to entice more doctors to come to Canberra.

I have found that there are very few paediatricians in Canberra (private and through the hospital). The waiting list to see a private paediatrician is up to 12 months.  Its not much better through the hospital system. Christie cannot see her usual paediatrician until October! She hasnt seen him since Feb. Ridiculous.  I have been advised to take her to Sydney to find a paediatrician, pain management clinic (the one here doesnt see children - this is the hospital). I have located a private pain management clinic but again the wait is until October and is very expensive.  So, as there is no paediatric uroligist in Canberra i take her to see one in Sydney. The opthamologist she has to wait until september. Genetics clinic in Canberra - October. As the genetics people are the ones who travel down from sydney i am just going to take her to Westmead as i have more faith in them than any doctor here in canberra!  Christie HATES the hospital and doesnt trust the nurses or doctors from her past experience. This is Australias capital City - the major public hospital, but there are practically NO services for children.

So yesterday we had an emergency appointment with an accute care paediatrician because i pretty much threw a hissy fit because they had cancelled her July appointment for no reason.  I made a written complaint to the department of Health. Amazing what can happen when you make yourself known to 'the powers that be'.  This particular Paediatrician (i am just going to refer to them as P cuz its too long to type it), so anyway this P told us that he didnt want to see her again as he couldnt really help her as he couldnt see her regularly. Great. The visit was pretty much a waste of everyones time.

I have been able to get Christie into the Psycology Clinic at the ANU. Its not ideal, but for now it will do.  The clinic is run by the ANU and the psychologists are students who are in their last year or 2 of their degrees or whatever.  They are supervised by fully qualified Psychologists.  The lady who supervises Christies team is a Doctor who worked in Perths Childrens Hospital with Children who have conditions/diseases etc and suffer chronic pain. So she knows what shes doing in regards to helping Christie deal with her issues, which is fantastic.  Today was our first appointment and both Christie and i are pretty happy to continue seeing them.  They even see me!  poor bugger lol his head will be spinning by time he is done. Todays visit was pretty much a 'get to know you, whats the issues etc' session which went for 1 1/2 hours.  Pretty exhausting.

Finally, i feel we are making steps in the right direction.  Now just have to finalise her Distance Ed, find a paediatrician and organise appointments at the Connective Tissue Displaysia Clinic at westmead for her to see the pain management team, physio, psychologist (its a multi-disiplinary team) and then our appointment with the Genetics Team there. Gosh i am exhausted thinking about it!

On our next trip to sydney in a couple of weeks i have decided that amoungst all of this pain and medical 'stuff' she is going through its time she had some FUN so we are thinking about going to Luna Park or at least something out of the ordinary for her.

Mother-Daughter Cycle

I always said i would never say the things my mum used to say to me, to my children. Have you ever said that to yourself?  Things like:  when i was a little girl... I was never allowed to wear makeup. When i was a little girl i ALWAYS had to eat all of my peas.  And then when i became a mum, sometimes i catch myself saying the same things to my kids and thinking omg i sound just like my mother.

When i was left home i always thought i would spend heaps of time with my mum. But then life gets in the way, kids, husbands, work, just stuff. Then the phone calls dwindle and the visits become irregular. Finding time for my mum is hard or maybe its not the finding of the time - its making the effort.  Of course i am there for her when she needs me, to take her places and be a shoulder for her.  But what i have come to realise just in the last week or 2 is that maybe she just needs to hear from me a bit more. To go visit just to say hi and for her to be more involved with my family.  After all she is the only mum i have.

I have come to this conclusion because i am now a mum with a daughter who has moved out. I miss her more than i ever thought i would. I don't want to crowd her or be a pushy interfering mother, but i just miss her face, miss her voice, miss the way she used to crash through the front door at 2am after a night out. I even miss the way she managed to get hair dye from one end of the bathroom to the other.

I wonder, does MY mum miss this kind of thing? I never ever ONCE wondered about this when i left home and here i am a grown woman of 43yrs and its just dawned on me that my mum could be feeling this way too. I don't want my daughter to treat me the way i have treated my mum.

Mum, i love you so much, and i am sorry that i haven't been in your life more.
Hayley you better be in my life baby because u mean the world to me.

Hayley my gorgeous daughter

My Mum

 



Tues:  So today i invited my mum and nephew Drew over for lunch. It was really lovely spending some time together. I made Declans recipe for Potato & Bacon Soup, some fresh bread rolls and a couple of games of Rummikub made for a great afternoon. Something we should do more often!  (& of course i kicked ass in Rummikub hehehe)

Me, Christie & Ehlers Danlos

Ehlers Danlos...so complex. Christie (11) has EDS Type 3 (hyper mobility)...we think.  We are still awaiting a definitive diagnosis. It's been an extremely long and painful journey so far & its not over, not by a long shot.  Christie also has had 3 positive ANA results which indicate a possible autoimmune disease - which is also being investigated. She is seeing all kinds of 'ists' ~ Urologist, rheumatologist, opthamologist, podiatrist, dentist, cardiologist, psychologist, geneticist and i have discovered that anyone ending with an ist is expensive!   She also sees a lovely osteopath..no ist..and therefore not expensive. She loves going to see K because he doesn't usually cause pain.

I have learnt to stand up for my child and follow my mothers' instincts. I no longer put my total faith in the medical profession. I don't take their word as gospel truth. They don't know my child like i do. So i WILL fight for her...don't mess with THIS mama Bear!

There are so many appointments, so much paperwork and quite a few tears mixed in - both mine & Christies.  She is struggling so much emotionally & physically.  The constant pain is so draining on her.  

In her world of pain and anguish I am trying to make happy memories for her.  Its rather difficult to be positive at times and i do struggle with this.  Don't be such a negative Nancy - be a positive..petunia??

We have 'met' a couple of lovely families online and actually met one of these families in real life - Suzi & young J.  Its an incredible feeling when i first stumbled across another mum who knew what we were going through. Made me feel i wasn't going insane and it also helped Christie to feel SHE wasn't going mad and that someone really believed she was hurting, not attention seeking or anything else. So many times people including doctors and nurses, have indicated to her that her pain must be imagined, or in her head, or that she must be depressed or having problems at school or home. For her to be able to talk to another child who is experiencing similar things was such a relief for her.

For a bit more of the medical side of EDS check out this link: but remember - it is different for every child. Ehlers Danlos

I also have some photos of her 'party tricks' which i tell her she cant do anymore because it isn't good for her body.  I took the photos so if she feels the need to show her tricks she can show the photo instead! but i will add these later.

Christies feet ~ a work in progress

Most nights C cant get to sleep bacause of the pain she is in, despite pain killers. Sometimes she is still awake at midnight. Looks like our kitten Jizzy had a late night too

EDS is a connective tissue disorder. We are not sure if its the EDS or the possible autoimmune disease that causes this kind of reaction when something lightly presses on her skin. Here i put my hand on her leg firmly for a couple of seconds and this is the result.  It happens everywhere, her face, arms, chest, legs, back. Once i remember a nurse freaked out because she thought C was having an allergic reaction to some medication.

Christies hands & feet 'sweat' so much at times that they literally drip. When she writes it runs down her fingers and pencils onto her work and it smudges. This makes her feel sad.

a bit of love goes a long way ~ her new friend J gave her this bear when we went to Childrens Hospital at Westmead

People I care about

Brian (my firstborn son) & his beautiful lady Charmaine

Grandparents with some of the grandkids

Grandma & G'Pa Kev

Hayley turns 18! first legal drink :)

The Maddox Family

Cousins

Christie and Bandaged Bear (from her new friend J)

Beginings of an Empty Nest

As i have just discovered, time goes way too fast and before i knew it my beautiful eldest daughter Hayley flew the coop!  Its only been a little over a week and its AWFUL.  She was hardly ever home anyway, working, dancing, hanging out with friends etc but at least i knew that HERE was where she hung her hat so to speak. I saw her every day. I had a 'toe' in her life. Now, i dont know what her plans are, i dont know if she is eating well, or at all, i have no idea what her home looks like now she has moved in. Now the 'EXPO' is over and she has time to breathe again i am sure we will catch up and i can go over and have 'coffee' with her. Her dad hasnt even SEEN her house lol...poor dad. Anyway, i think its hit me harder than i thought it would - i wasnt ready for it! I dread the day the last one moves out of home - then it will be an empty nest.