10 OCT 14

This is the STRESS factor...

I have had it with State/Federal governments and Medicare!
My Rheumatoid specialist has had no success with Medicare re my getting Humira for my Psoriasis. They keepinsisting I didnt complete the dosage the first time I was on it.

Of course I didn't!!!
BUT that was the fault of the pharmacist (not advising I had one more dose to take) and my specialists' nurse who insisted the script be left with the pharmacist and unfortunately she was so insistent I listened to her.

Medicare wouldn't listen when I contacted them explaining the situation... they didn't care!

SO...

Thanks to recent TV news broadcasts re a possible Ebola victim in Cairns, I found out the name of the Chief HealthOfficer for Queensland. She will be receiving a Registered Post letter from me with explicit photos and detailed description of my problem. That way she'll not be able to say she never received it. I'm also advising her that if I get no satisfaction I will be contacting 60 Minutes, Current Affair or Sunday Night (Channel 7) with my story.

A copy will be sent to the Federal Minister for health (including photos).

I asked Jason if he would mind taking photos because I don't want him to feel embarrased.
He said if he could (in the past) handle bodies that have been discovered 4 days after death, then he can handletaking photos for me if it will help get something done.

My Rheumatoid specialist has suggested another medication BUT it's a 2 weekly infusion.
I had huge problems the last time I had infusions. My arm would be black and blue for days afterwards because my veins don't want to co-operate. Sometimes I had to leave without having the infusion because it was too hard.

Another problem is... my monthly blood tests come back problem free.
As my GP said today...
"It's a pity Medicare don't see the patient in person, all they go by is the blood test results."
My innards are fine... my outside is a wreck!

So that's my story for the moment.

23 OCT 2014

The CEO of Medicare and the Chief Health Officer at Queensland Health received their letters on Tuesday and Wednesday respectively.
Haven't heard a peep yet.

27 OCT 14

I haven't just had One Of Those "DAYS".. it's been one of those WEEKS!!!

I've had a bitch of a time with my feet, the pain has been unbelievable.
I've had to walk on my right heel and keep the front of my foot raised every time I moved around all week.
It seems to be easing today... I've done a lot of sitting and moving as little as possible.

If you're not easily repulsed I've put photos up on a web page.
These are NOT FOR SYMPATHY.. only to give you an idea of what my problem involves.
I've spared you the worst photos that I provided the Medicare CEO and Chief Health Officer for this State.
http://www.artistrypsp.com/Jemima/EverythingPSP/Journals/2014/forAIPSP.htm

Now I have a frog residing somewhere in the drain for my bathroom.
Its croaking is breaking the sound barrier and it lets me know about every 30 minutes that it's there!!!
My bathroom (ensuite) is next to where I use my computer in my bedroom. I hope it finds its way out soon.
Jason wasn't interested in helping me scare it off!

1 NOV 2014

Yep... I'm back again with a bitchin' session!! LOL!

We have lived in this house for 32 years... from the day it was built. In that time we have had 3 different neighbours on each side of us. The neighbours to our west have been great as have our neighbours to our east UNTIL this last lot moved in about 6 weeks ago.

We live on a very busy road and have lost 2 cats to car accidents.
A couple of weeks ago Jason was out front and saw a couple of fox terriers playing on the road and enticed them back onto the footpath before they came to harm.

The neighbours came out, grabbed the dogs and disappeared inside without so much as a "thank you".

Every time they go out, the dogs which they leave in the back yard, start barking and don't stop until they come home! We can always tell when they're not home. Last night they yapped and barked for THREE HOURS SOLID!!!!
I WAS BARKING MAD!!!!!

So when I came through to my room I composed what I thought was a very polite note....*S*

"Hello,
I thought you should know that whenever you are out your dogs bark incessantly from the time you leave until you arrive home.

Their relentless yapping is extremely aggravating especially when we have to tolerate it for 3 solid hours as we did on Friday night. I’m going to have to stock up on Panadol.

May I suggest that whenever you leave home, perhaps you could keep your dogs indoors and give your neighbours a break??? Would be very much appreciated.

Thanks"

Jason dropped it in their letterbox, which they probably won't check until Monday.
No... I didn't sign it... Jason said not to... He didn't want them to come and abuse us.
OK... their 2 kids are out playing in the back yard right now and their squealing
(which I don't mind because it's not continual) is exciting the mutts and you guessed it... they're yapping again. GRRRR!!!!

HOWEVER... my other letter writing has had success!!
I wrote to the 'expensive' dermatologist earlier this week chastising him (politely) for not returning my call (message I left with his receptionist) re the problem I had with the new medication.

He called me yesterday, very apologetic, gave me his mobile (cell) number so I can bypass his receptionist in future. He also suggested admitting me to the Brisbane Women's Hospital for a week and have "Phototherapy" (Ultra Violet light) to see if that would help with my psoriasis.
I told him that I was waiting for the person assisting the CEO of Medicare to get back to me re the HUMIRA... BUT if there was no success from her I would certainly consider it.

I don't fancy the drive to Brisbane again... but Jason thinks it's a good idea and I'm sure, is happy with the thought of getting rid of me for a week!!!! LOL!!!

So it looks like my letter writing ability might be working!!!

The mutts have stopped yapping. Yippee!!
Hope the neighbours stay in tonight.. *S*

 

13 NOV 2014

Did my fortnightly (that's 2 weeks for my American friends) shopping yesterday..not a good experience. My feet were 'cramping', causing a lot of pain. By the time I got everything put away I was "cactus"!

I have an appointment tomorrow (Friday) with my dermatologist. This time I have to see him at our brand new 21st Century hospital instead of the clinic just one block from where I live.
Not getting my hopes up... then I won't be disappointed.

Also have an appointment at the end of the month with the local Orthopaedic Specialist.
Can see that will be a waste of time... he's useless and I can't work out why he wants to see me.

18 NOV 2014

Had a busy day on Monday organising Medicare refund for my Friday appointment.
As usual nothing went smoothly... but got it sorted in the end.
Then I had to get Jason to collect Travel Forms from the local hospital so I can be refunded for those costs. Jason also delivered a message to my GP... cancelling my Friday (next) appointment and a note explaining why.

I checked with the Brisbane hospital... they don't have WIFI :-(
BUT they do have an Internet Kiosk.
My getting to use it will depend on what happens to me... I might be attached to equipment so won't be able to wander around... we'll see. If I don't have any "attachments" Jason suggested I request a wheelchair so I can get around. *S*

I typed up a TV Program list... for my fav shows so I know what's on and when.. LOL!!!
Got my bag half packed.... and yes... Daylili (Peg).. I packed some goodies (snacks)!!
Also taking a notebook to keep track of what goes on... can't trust my memory.

Jason informed me there are possible storms predicted for tomorrow so we're going to leave REALLY EARLY...probably 8 or 9am for the 2pm appointment. It's a 3 1/2 hour trip under normal conditions but it doesn't look like the weather will be normal. We can have lunch if we have time to kill. They have a half decent restaurant at the hospital.
I won't be able to relax until I know Jason gets home safely from the trip.

We are experiencing storms... thunder and lightning.. so I'm signing off.

8 DEC 2014

I got home on Friday evening after 24 wasted hours in the local hospital. I told the local hospital there was no point in my remaining there since they were unable to continue my treatment.

I've posted a copy of the letter which I sent today to the Patient Liaison Officer at the Royal Brisbane Hospital and to the Health Ombudsman.

http://www.artistrypsp.com/Jemima/EverythingPSP/Journals/2014/December%202014.htm

My body aches at all the joints from being bedridden for over 2 weeks and from other traumatic experiences. My leg ulcer was healing when I was transferred to the Hervey Bay Hospital and my Psoriasis was under control. BUT true to form the local hospital had none of the medication to continue the treatment!

So I've ordered the necessary medications myself from Independence Wholesalers and they should arrive tomorrow so I can have the treatment continued at home.

If you're interested you can read the entire experience on the above link. I have no faith in our hospital system!

This Royal Brisbane Hospital was supposed to be one of the best in the state.... I totally disagree.

Don't know how much time I'll be spending daily on my computer since my hands are sore and my fingers ache. Will have to see how well my pain killers work.

I received a phone call from the Royal Brisbane Patient Liasion Officer a short while ago...
She was horrified as to what had happened to me and it will be thoroughly investigated. It will take a while, maybe won't get an answer as to what they are doing to change things until after Christmas. BUT she gave me her direct phone number and name so I can contact her at any time to find out how the investigation is going.

I made a note of her name and number but told her a letter will do when they have made their decisions. She was pleased that I didn't keep quiet because they need to know what is happening around their hospital.

So... it pays to write letters *S*