Hard

To look back over the last 12+ years,

And think of things I haven't been able to do

Without feeling guilty

I have tried so hard

Put all of my energy into appearing to live a normal life

I would never want anyone to think it was because I didn't 'want' to do things

Rather that it was just too hard

I'm no quitter

G
Xx

DID I REALISE>>>>>

I'm still here

I think I'm still in shock

And still being shocked by a few peoples reactions, although I shouldn't give a rats arse

Most have been great, want to know more, supportive

other have come across almost pissed off, skeptical, annoyed

One of the Australian Lyme support groups I joined on FB has nearly 500 members, that's just one group, that's just on facebook

snippy comments

Scared I might not be available for them to dump all of their problems onto most likely



I KNOW I am worse since we received our test results

WHY?

A: I don't feel like I have to hide it any more

B: Extreme amounts of emotional upheaval have ALWAYS had a negative impact on my health, happy/sad/angry/excited it makes no difference

I can't mentally conjure up the skin infection I had for the last 2 weeks
It looked (and felt) like I had shaved my bikini line with a dry, blunt razor in the dark 
I also had a huge patch on my chest
My GP actually cringed looking at it
5 prescriptions later and it's a lot better now

Pretty active imagination I have

I have had to take antibiotics for the skin infection
I need to have 14 days clear of them before our appointment as it affects test results
Thank goodness the timing is spot on

I woke up on Sunday with my face all puffy and eyes all swollen up, a horrid cold sore...
I just couldn't get up :(

We are still off to Melbourne NEXT WEEK!!!! 
For a pre planned pre paid holiday, and to see P!NK in concert

Corey is coming up from Hobart on Sunday to keep Small Man company and will be here for 10 days
Such a relief not to have to leave him here alone

Possum will be here but works night shift every weekend

My Possum turned 22 on Saturday, precious young man he is ♥♥♥

G
x♥x

p.s. That infernal ringing in my left ear?? Still there :(

Bumbling Along

Things are pretty much the same

Although I am taking more notice of things I have just ignored ~ until recently

Walking up a hill after dinner with friends

And I was badly short of breath

I realise I am unfit but wow

The sweating is ridiculous

Then the extreme cold chills

It feel like I have been tasered in the back or something

When it's really bad I get this horrible stinging in the palms of my hands

Fun

I just want to document everything

So that I can look back on it with disbelief some day

I woke up this morning with a mouth full of blood

Not sure where that came from it wasn't my nose

Random

Still with the infernal ringing in the ears.......

Relying on the few hours of slightly improved energy to get everything done

Oh did I say everything?

No, just the important stuff

I'm doing my best

I'm trying so hard

I'm sure it doesn't look like it....

G
x♥x

I see..

Flights are all booked

We are only going for the night

Not much in the way of return flights to stay for 2 nights

Possum has decided not to come

I need to scan all of our test results and send them through to the new Doc

And still a few other things before we go

Small Man had an appointment with the surgeon yesterday, in the middle of all of the drama

It went well, no problems this time hopefully

I am giving myself permission to take things a bit easier
I was supposed to pack the order in the freezing cold last night but given that I am positive for:

Chlamydophila pneumoniae is a species of Chlamydophila, an obligate intracellular bacterium^[2] that infects humans and is a major cause of pneumonia

Legionella is a pathogenic group of gram negative bacterium, that includes the species L. pneumophila, which causes Legionnaires Disease and L.longbeachae which causes Pontiac Fever.^[1][2] 

With a bit of:

Scrub typhus or Bush typhus is a form of typhus caused by the intracellular parasite Orientia tsutsugamushi, a Gram-negative α-proteobacterium offamily Rickettsiaceae first isolated and identified in 1930 in Japan.^[1][2]

Thrown in....

....and the other few.

I thought it best not to be out sweating in the cold.

Not that it feels much warmer this morning, but deadlines are deadlines and I have managed until this point.

Yes it could be worse, it could always be worse, there is always something worse but try and imagine how you might feel if you had been sick for over 10 years, slowly getting worse and with no answer?

If you had to sit and watch your son miss out on 7 years of his life, only to find he has a disease that could have been treated with antibiotics??

My life's hurdles can't be compared to those of someone elses.

I think I'm allowed to feel however I like about this actually.


For some reason I feel like a cigarette this morning, but that will pass.

G
x♥x

Naturally it all got sorted out

And he is able to go with us to Sydney.

So now it's July for our appointment.

I'm just so tired and relieved

Did I mention I'm completely OVER this infernal ringing in my ear?

G
x♥x

That time when I couldn't stop bawling

Like this afternoon.

We had it all organised, then the secretary emails me, the doctor is on leave mid August, it wasn't written in the book.

If Big A can't get someone to cover him in July, then Small Man and I will have to go on our own.

No big deal?

It is when you can barely go to the supermarket on your own.

I am sensing some thinly veiled scepticism from a few people STILL.

You know what?

F*ck off.

I don't need it.

Blah Blah Fecking Blah ;)

I'm writing a lot more because I'm thinking a lot more,

in fact it nevers stops

neither does this infernal ringing in my fecking ears :(

Cos that's just how I roll these days (and I roll, trust me)

~

I am thinking about how things were

How things might be

The 7 year cycle for Small Man that may well get broken, smashed into smithereens even

And the chain reaction

people considering their own state of health

Everyone knows someone that this shit will fit

Where's the harm in getting it checked out?

There isn't any.

~

Looking at accommodation in Sydney

Jesus, they do know we are just going for the night, right? 

Well that's how it looks as it's getting exy, 2 nights is pushing it

But then if I have learnt just one thing from this whole saga

It's that life is far too short

Experiences, not money, that's the wealth

Unfortunately though some experiences cost money

Not sure I want to take my baby to Sydney to look at the inside of a hotel room overnight, then a waiting room, then whisk him home again

This young man has missed out on too much already

Maybe some people we know that are related and have a few spare $$ will sponsor us??

Not sure if Possum is going to come with us or not, depends how long we end up going for, not much point if it's just overnight

~

My goal is to have Small Man recovered by the time he is 21

Treatment can take a while

My sleep pattern is currently cactus

~

I missed an appointment today

I NEVER miss appointments

I feel so bad :(



Sorry, if you have just found me again or noticed my raving posts, I will add a link to the one you might want to read, so that you don't think I have totally lost it ;)

G
x♥x


Click here :)

Hairdresser Infrequency

It occurred to me the other day

That the only times I have been to a hairdresser over the last 10 years or so

I have taken a photo after....cos why? I have no idea! Possibly as it's so rare.

You can just see George's ear in the bottom corner of the photo :)

This was the last time I had a significant amount of hair chopped off.
A 'friend' talked me into it.

Now, I just look fatter with shorter hair so will keep it long, and will keep my extensions in until I get sick of them

The one other time was the photo I put up the other day, I'd had my hair straightened at a salon in Melbourne.

It feels like a waste of money when I can trim and colour it myself for around $6 (I only need half a pack of colour mixed up at a time).

The one time I went for a trim and colour it looked exactly the same as when I do it myself and I was charged $80 - I dare say it's a lot more expensive now.
I can think of plenty of things I'd rather spend money on, or actually need to spend money on!

G
x♥x

Worth Considering

No, I don't think everyone has Lyme disease now, not at all.


But some of you reading this may want to get tested for it!!

If I hadn't joined the support group on Facebook and seen the photos I'd be none the wiser.
Sharing information, which may be relevant to you or not, but if it helps just one person not suffer like we have then it's worth it.


If you have been diagnosed with CFS/ME, Fibromyalgia, Lupus and in some cases MS then you have nothing to lose.
Or you may not have been diagnosed with anything at all, but you have ongoing seemingly random health issues, and not just physical ones.

Do you live in any of these areas? Or have you ever?


From what I have read Geelong and Newcastle are 'hot spots' for diagnosis' of Lyme, along with some parts of WA


Our positive results for 'Rickettsia' or 'Scrub Typhus' can only have come from a paralysis tick.....

G
x♥x

Sooo much in my head right now

It occurred to me that none of you have known me when I am 'well'

I'm not sure I remember 'me' before 'this'

I don't want much or have sky high expectations after treatment, I know it's probably going to take a while

To be able to go for a 30 minute walk and not be drenched in sweat by the end of it would be nice

Also the ability to cut my toenails with ease 

To feel that I have ANY sort of control over my weight, as this part has bothered me the most

This is me:

Not the current version.

All these years I have been made to feel like a hypochondriac.
I have kicked people out of my life for openly criticising me.
Turns out it was justified.
No-one would choose any of this.
For people to make me feel like I am just not trying hard enough or 'fat and lazy', that sucks.
Especially when it has come to Small Man.
Especially when I could feel myself slowly deteriorating, but not having a 'reason' for it.

If I have been able to do all that I have done whilst fighting this disease then imagine what I'm going to be able to do when I'm better.

I won't know where to start.....

For now I am giving myself permission to take it a bit easier, to do what I can when I can. 
August is still 2 months away.

G
x♥x

When I'm right, I'm right

Positive blood tests results today for me: Bartonella, EBV, Parvovirus, Legionella and Rickettsia.
Small Man EBV, Parvovirus and Rickettsia.

These are specific to Lyme disease (all together, singularly EBV and parvovirus are common).

Not having positive others doesn't mean we don't them them, false negatives are very common.

This however is enough proof for me that I am on the right track.

And sucked in to anyone that thinks there is/has been nothing wrong with me/us and shame on you!!!!

We still need to go to Sydney.

And Small Man needs to go to the cardiologist in the mean time.

Seems I could be right about him having POTS too.

Fancy that.

ANYTHING to improve his life 

Anything.......

G
x♥x

Kind Of Caught It

I have been having these tachycardia 'events' for years

Have never been able to catch it with a monitor or ECG etc

I had an event the other night and thought to whip out my handy little blood pressure monitor and try and catch it

I think it gives an average of the heart rate ~ it was well over 180 bpm a few times.

I think I did well to get the machine on, and photograph it in the middle of one of my 'heart attacks' as I call them.

I guess I am used to them by now.

Only once have I struggled to stop it ~ I can slow my heart rate back down eventually but it takes a lot of breath holding and flipping over 'valsalva maneuver' or something it's called