Catching Up

Just to briefly catch up from where I left off....some time last year I think?

I have an 18 and nearly 22 year old son - how the hell did that happen??

Possum is still working where there are golden arches - and they are steadily repairing the damage done by too much stress and pressure, in fact he is doing Cert 3 in Retail and Crew Trainer ~ and has been approached to consider management training.
He is happy!
He is not applying for ANY IT positions in the foreseeable future.
And he is happy.

Small Man has now lost 40kg.
He is keeping steady with the weight loss now.
I saw a tv show recently showing a body lift surgery - NFW am I going to allow him to go through that!
Or hopefully any plastic surgery.

There is a course he'd like to do.
But we have discovered the organisation is now a non RTO :(
To think he almost paid them $1000 to complete the course.
He can't work at this stage, but he wanted to complete something.
We will need to look into an alternative REGISTERED training organisation.

We have had two disasterous appointments this year.
One on an emotional level, one on a physical level.
Long story short we went to Melbourne to try and get some help and advice from a so called expert in CFS/ME.
The result?
He was told 'some people never recover from this' and to 'do a TAFE course'.
I was made to feel like one of those mothers that makes their kids sick for attention or whatever they do.
OMG it was awful.
The only good thing that came from the appointment was the prescription of Melatonin.
It has helped Big A HEAPS between shifts (he works day then night shift, 12 hour shifts).

Oh, that's right the Melatonin was for Small Man....
Yes Small Man does take it but it's very hard to break his sleep pattern and keep it consistent.
In fact it's nearly impossible.
I felt criticised for this too.
Talk about making me feel like shit, and that I'm not doing enough for him :'(
We have found ordering it from the USA our best option, you can buy it on eBay for a fraction of the price of a private script ($40 for a month private script).

The second appointment that was a disaster was with the surgeon that is now adjusting Small Man's gastric band.
He added some more fluid to the band, called a 'fill'.
Small Man always drinks some water after the adjustment to make sure it will go through the band, if it doesn't then the band is too tight.
This time the fluid went through, all was well.

We came home, he ate some pasta for tea and everything was fine.
The next day when he woke up he vomited immediately - shouldn't happen as he hadn't eaten or drunk anything yet.
He then found that water wouldn't go down.
I was at work, on the other side of town.

It was nearly 'knock off' time for doctors surgeries and the like.
We couldn't get hold of anyone (the surgeon is only in his rooms Wednesdays).
I ended up ringing our original surgeon in Melbourne to ask advice.
Which then led to 5 hours at the emergency department waiting for someone that could remove some of the fluid from his band....by the time we saw someone he had been over 24 hours without fluid. 

Not good for a well person let alone an unwell person.

Anyone that thinks gastric band surgery is in some way an 'easy' way out seriously needs a slap up the side of the head!

I have also found an amazing alternative therapist for Small Man, so he has either Bowen therapy, a massage or reflexology for 30 minutes per fortnight. Whether it helps or not who knows, but it make him feel relaxed and good and that's all that matters.

Apart from that everything else is pretty much the same.

I am still doing the same job, it's not too bad at the moment.
I reached 15 years of loyal service in January and not a single f*ck was given but that's ok, I shouldn't have expected any different......

Mum has been helping me out with the banking, so pops up once a fortnight to take care of that and some folding of washing. 
Different for me to get used to but it's been good :)


G
x♥x

Awesome :)

The doctor we will be going to see sent an email this morning, to say that Small Man's consultation fee will be 50% of his usual fee

Wonderful :)

So very kind of him, and speaks volumes as to his willingness to help over profit

Ordinary GP visits are around $60 for 10 minutes, so $720 for an hour isn't over the top

Especially when there are very few doctors in this country with the necessary experience, and he is the best (or so they tell me!)

G
x♥x

Crash

Naturally we have both crashed

Small Man from the appointments, blood tests and 24 hour blood pressure monitor

I should add, he does still have CFS - but we may now have a cause for it

No wonder he is not allowed to donate blood

Methinks that 'people' know that a lot of people have Lyme.....and just don't want to admit it
The financial consequences for one.....

Me, crashing from the thinking and reading and thinking and reading...
With work on top and starting new people and having to lay the law down and...too much

Maybe my body is just a bit relieved

My mind is - nearly

Today has pretty much been a write off

Does it really matter?

Do I have to achieve 'x' amount in one day to consider it a day?

Too bad really

This weekend, at the end of my extra busy week (I have extra busy one week and not so busy the next) is always a struggle

I have had a thought that our $720 consultation fee EACH should actually put us over the medicare safety net - so the first appointment should put us over, then we should get a rebate of 80% for the second one....should...

Interesting the reaction I have received to this from 'friends' and family. Always easy to tell who is pure of heart and genuine.....


G
x♥x

Knowledge is power....

I have been reading as much as I can

Knowledge being power and all

Interesting when all of my niggly (and not just niggly) issues over the years 

Are all spelled out under the one heading

My weight problem for one ~ SOMETHING had to be going wrong

Even without exercise, at one point I was on 500 calories per day with no result

Weight gain can be a major symptom of Lyme

Small Man doubled his body weight over the course of 5 years...30kg in the first 12 months

Sensitivity to fluorescent lighting

Acidity - high protein diets not recommended ~ I remember getting GOUT

Excessive sweating

Being a derp and walking into things, a lot

Dyslexic typing, often

Losing words ~ complete blanks on names especially

Saying the wrong word

A lot of left sided stuff early on

More and more of the children whose Mum's post on the support group for CFS/ME are posting that their children have been diagnosed with chronic Lyme.
Two just this week, out of 154 members.
I should add that both of these are in the USA ~ seeing a specialist there and getting a diagnosis is easier.
One of these Mum's was MAD last night.
Her relief that her daughter could be treated and may recover spilled over into bitterness and anger that she had to figure this out herself, and seek a diagnosis herself...

So how do you reckon I'm going to feel?

The more I read, the more confident I feel that I am on the right track.


G
x♥x

Phew.....

Our GP appointment went so well....

I was very nervous as he is new (to us) and to present a new GP with some slightly controversial thoughts and ideas is scary (to me)

He took us very seriously, and said, we should not discount a diagnosis of Lyme as a possibility ~ considering the length of time we have both been unwell, the sometimes random symptoms I have had that have come and gone and come back but fit Lyme perfectly.
These things are too specific to Lyme for us to ignore.

My thyroid issues, hormonal imbalance, Lichen Sclerosis, weight loss then gain, pins and needles in my head, feeling like I am tipping backwards when I walk up steps (more recent), reflux, agoraphobic type feeling, brain fog, fatigue, orthostatic intolerance, dental issues since it started (god knows how many fillings I had over the first few years), skin rash (3 different diagnosis's for this one), tachycardia, curved fingernails:

Hip pain that comes and goes but when it's here it's insane, exercise intolerance, night sweats, constant sinus issues....I could go on and on...

For Small Man it's profound fatigue, headaches, exercise intolerance, anxiety, heat intolerance, knee pain, streak type rash on his back, hypermobile joints, orthostatic intolerance, tachycardia, night sweats, brain fog.....

The symptoms can come and go, and are different in everyone.

For some the neurological symptoms are the most disturbing and are often treated with unnecessary psychiatric medications, that won't work.
For others (like myself) they are diagnosed incorrectly with Lupus/MS/ME (which I have always known didn't fit btw) and are given steroid medications which can make Lyme worse...as I was, until I stopped taking it.
I was, on the other hand, prescribed Plaqenil, an anti malarial drug which may have helped a little.

The reactions I have had to antibiotics (getting much worse in the initial 48 hours) could actually be what is called a 'Herx' reaction - this is a reaction to treatment for Lyme. From what I have read the worse you 'Herx' the more it's helping, and the better you will feel after a course of treatment.

I didn't just jump at this because it fit, it all fell into my lap, I researched and researched for days, reading everything I could find, the more I read, the more it made sense.

Not sure how I am going to feel if we both have it.

Especially Small Man.

To know he has had something treatable for the last 7 years....

I am NEVER going to accept that this is all there is for my baby, I will keep going until he is better, no matter how that comes about

G
x♥x

Really?

I know...

Life keeps getting in the way.

It's been hectic.

Some days I'm really struggling to keep up.

I joined a support group on Facebook for parents of children like Small Man.

Parents from all over the world in a similar situation, children and young adults in varying degrees of ill health.

Recently there has been a lot of discussion regarding Lyme disease, which I kind of half read with the concentration of an exhausted, worn down person who has been fighting for a very long time....(fighting?? schools, doctors, family, 'friends', illness.....)

That was until a few posted photos of their kids rashes

Rashes that look exactly like the one Small Man has on his back

This is his lower back, in the middle.

I assumed these were some sort of stretch marks.

I posted the photo on the group page and it prompted a flurry of activity, friend adds and messages and research - and then the photo was emailed to one of the few specialists in Australia.
The response has been that it looks very much like Bartonella streak rash.
Bartonella is a co-infection of Lyme disease.
Lyme disease causes Chronic Fatigue.

My brain went into overload for at least a week.

To cut a long story short we each have symptoms specific to Lyme.

LICHEN SCLEROSIS - is considered to be a co-infection of Lyme disease - yes really.
This one was a bit too specific for me to ignore this.

We are seeing our GP tomorrow.

Hopefully he is open to this.

If not I will need to navigate our path to the mainland.

Blood tests here (in Australia) are considered unreliable.

If we have to send tests to USA it will cost....

$1500 EACH for full testing.

If they will treat without testing that would be totally fine with me, I'm not looking for validation any more.

I want my baby well.

I want ME well.....

I am trying so hard not to get my hopes up :/

Will keep you in the loop.....

***Just to add***
http://www.skinsensibility.com/treating-lichen-sclerosus-with-antibiotics/

Just one site of interest....

Today went very well, will update tomorrow some time ~ pretty tired now xx