~Ahhh The Ebb and Flow of it all ~

I am far calmer than I was last time I posted

Old wounds can tear open sometimes

Without warning, without a 'reason'

They just do

I suppose things have been pretty out of the ordinary lately

So it shouldn't surprise me

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Barney has been in and out of the black hole

He won't let anyone comfort him during these episodes

The best we can hope for is that he rides it out ok

And hope will all of our hearts that the next episode is a long time away for him, even though the reality is it's never far away

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I have been reading up on the use of cannabis oil for treating Lyme, depression/anxiety, pain etc

I haven't made any decision on it

But have read some pretty amazing things

From real people

A girl I went to school with attributes it to her survival from 2 different rare types of cancer

Food for thought

I am open to anything that doesn't hurt anyone else

I could add that to my list of highly controversial decisions ;)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I am BATTLING on Zithro

I hadn't expected such weakness, such fatigue

The muscles twitches/spasms are worse

The joint pain....oh......

I crash HARD on this stuff

I need to cut it back a bit to be able to work

But it can work well being pulsed, I believe

So I'm doing that


Our doctor is having open heart surgery this week :(
If you are the praying type, please spare one for him
He has helped so many

There is no-one else to look after us until, hopefully, he returns
Something else to worry about :/

xx G xx

~Walk A Mile, then walk back again~

I am very sensitive to perceived criticism regarding my parenting choices and decisions

Let's face it I have had some doozies over the years, and I always seem to be 'first'

I have dealt with severe anxiety, ADHD, eating disorders, bed wetting, speech therapy, occupational therapy, hand writing issues, psychologists, psychiatrists, gastric band surgery, dieticians, endocrinologists, cardiologists, medications, physiotherapists, exercise physiologists, paediatricians, audiologists, pathologists....the list goes on (I'm sure I've missed a few).
Basically 23 years of appointments, challenges, issues, always, constantly and with very little help from anyone (husbands not included).

I had no idea what I was doing but my god I have tried, and persevered and almost won with all of it except the eating disorder that has plagued Barney for 18 years.
I don't think I could have possibly done any more.
I feel that I have been heavily criticised for not doing more for him?
That it's in some way behavioural! and that makes me feel sick with anger and hurt.


Tread carefully when you are questioning parents about their choices or decisions, you never know what you might have to face with your own children or grandchildren.

💕G 💋

~ Surviving ~

Yeah, I'm still here

Finally a quiet morning to sit and write 

It has been a busy week which doesn't really suit me if I'm honest

I seem to cope better physically when I have a busy day/quiet day plan

Life's not like that though is it

~*Update on Mum*~

Her latest pathology was all clear!!

Finally some good news

She is exhausted as to be expected, but recovering well

Lots of rest

Home help for an hour per week for 6 weeks

Plenty of visitors and flowers and support, it all helps.

I am so relieved.

~* Drugs So Far *~

Going fairly well.

My Artemisinin finally arrived so I have started on that.

I'm still not convinced about herbal remedies (you may be surprised to read) but I am happy to give anything a whirl.

I mean look at the power of Vitamin D, Vitamin C etc.

I dunno, I must be a druggie now, just want the hard stuff ;)

Loads of posts floating around about cannabis oil and it's supposed ability to 'cure' Lyme disease.

Just my luck I'd get caught, or fail a roadside drug test (not that I've ever been tested) or something.

Plus it falls into the category of 'herbal' so.....

Barney has been a champion over the last few weeks.

The Riamet has flattened him completely, but he has had a friend over from QLD (not staying with us).

So in typical 'pacing' fashion, he has spent time with his friend in blocks, then coming home to sleep for hours on end.

And sleeping all day to prepare.

Going out to Laser Wars, then for dinner in 'town' and out in town to a few bars while the other have a few drinks* 

These are the things he should be doing at 19.

So hard to watch him struggle.

At least it's not forever I guess.

We both started on Azithromycin as well this week.

Nothing to report so far....

~* My Crazy Job *~

It turns out that when things are insane I pull out some reasonable results.

The owner of the company actually rang me Wednesday to congratulate me on my results and management of my team.

It was a really nice moment.

In fact he is coming to see ME in a few weeks.

Nice!

That's about it.

  

Hope all is well in your world.

xx G xx

* We are intolerant to alcohol. It amazes me how medical professionals/people in general assume Barney must drink because of his appearance (big lad, long hair, beard, lip piercing). 
Interesting....

~ I'm Really Not Sure ~

Just how much can the human spirit endure before it starts to crumble?

I have been fairly resilient over the years

Losing my father devastated me, for a very, very long time.

I managed to put the pieces back together, but of course they are never as they once were

I haven't sat up in floods of tears for a very long time

Of course it's not every day that I visit my mother in hospital either

In fact I never have

The little lady has had one dose of antibiotics IN HER LIFE

That's it

Now she has breast cancer and a possible heart problem

Is this even real???


Add to this my support has been away with the Champix fairies

That stuff can be dreadful if you are in any way neurotic to begin with

Great for giving up smoking but possibly better for those that live alone

And don't work

Or have any friends/dealings with people in general.....


I am feeling guilty about the expense of these medications
I am feeling guilty about the length of my illness
I wonder what it would be like not to have to instruct people via facebook on how to be supportive?


I miss my Dad.

Sometimes I just want to go home*, just for a little while


xx G xx



*home being the house I grew up in, with my Mum and Dad. Not some trippy religious shit

~Where Was I ??~

Update on Mum.

The tumour she had was a rare non typical breast cancer.

At first it was expected that she would need the tumour removed, then radiation for 7 weeks.

After removing the tumour further cancer cells were found.

The surgeon advised that a mastectomy would be the best option.

She has had this today, this morning.

We had tea together last night.

Our little family.

Our big boy was asleep after night shift so missed it unfortunately.

This is difficult for the boys, to know what to say, or what to do, or how to be.

I mean, we don't really talk about Grandmas boobs, like, ever.

Of all people for this to happen to.

My mother is one of the purest souls you are ever likely to meet.
Not a nasty bone in her body.

Not that I would wish it on anyone, but gee.

Surgery went to plan I am told, and she is sleeping now xx

~~~~~~~~~~

Barney and I had our trip to Sydney to see the Wizard.

We didn't arrive until 9.30pm, kinda scary for a small town girl arriving in Sydney and finding a train to the city.
Which we handled like pro's ;)
I said "Look at us all looking like we know what we are doing"

The day had been mega ultra stressful leading up to the flight

Courier issues. Yep. Say no more.

I had booked a hotel literally a stones throw from where our doctor is when he is in Sydney.

Barney went first this time.

He really should have been reviewed earlier.

I knew this.

None of this is free though.

So anyway he has 3 new prescriptions to start on.

Riamet, Zithromax and Triprim. On top of Doxy and Rifampicin.

I went next (last time I went first and I was in shock/a zombie for Barneys appointment, it was too much for me).

I am technically worse than I was 12 months ago.
The meds are shaking things up but not killing them.

I was recommended to start Plaquenil, Riamet, Zithromax and Triprim (each to be introduced slowly). On top of Doxy.

We also need TOX-ease so that we can cope with the drugs.
5 grams of vitamin C daily, and a few others (NAC, magnesium etc).

We both definitely have POTS (Postural orthostatic tachycardia syndrome)
Well no shit, I have been saying this for years!
For this we need compression socks to be worn every day.
Salt.
2 litres of water minimum every day.

It is an aggressive treatment regime but it should see faster progress.

When we got home, I started getting prices for the pills.

Riamet is $88 per week - EACH.
Zithromax is going to be $90 per month - EACH.
Triprim is around $10 per week.
Doxy is $38 for a few weeks for me, $6 for Barney (whoop-de-doo a PBS script).
Rifampicin is $68 + postage for 5 weeks.
Plaquenil is around $38 (not sure how long it lasts).
TOX-ease was $98 with postage for a bottle.

I am already taking 5 other scripts for a variety of shit.
Some of it thought to be caused by the Lyme and Co.

So I have had to ask for an alternative to the Riamet for me.
It's just not do-able.
So I am going to be taking Artimisinin (spell, too lazy to look it up).
I have ordered this from iHerb in USA.
Hopefully it will arrive soon.

Lovely surprise - checked our statement and Medicare only covered $70 each of our appointment.
So I'm about $500 down on that, plus accommodation and flights etc...
Well over $1000 spent already, and have only bought Riamet x 2, Compression socks (I shopped around, but Barney is a little trickier to fit), Artimisinin, Vitamin C, TOX-ease, more Doxy....
Thinking i might need to go to Mexico or something to get all of this stuff :(

People actually wonder why I work.

We would not survive if I didn't.

We need to review it all in 3 months.

It appears to be affecting Barney, which means it's working.
It has knocked him flat.
He is cactus.
Fingers crossed it works quickly for him.

Lots more to write, but I will save it for another day

xx~G~xx