Milton Country Cottages - check them out (www.miltoncountrycottages.com.au). Absolutely lovely accommodation, amazing gardens, very friendly hosts, disabled friendly, & amazing pottery (& you can do a class with them to learn how to make your own or buy some of theirs to take home to appreciative family members). They do the most amazing crystaline pottery here, that is beautiful and very difficult to do (and so you don’t see it much in Australia). If you are thinking of having a holiday or short break from Sydney or Canberra head to here :-) (the photo is taken from their website, we didn’t take it)
H & C had a wonderful few days at Milton Country Cottages (you should all stay there, it is amazing, disabled friendly, the owners are über friendly and you can do pottery classes with a REALLY good teacher - miltoncountrycottages.com.au). Unfortunately H got sick & Nikki had to drive down to meet them in Braidwood to change the needle in the port-a-cath in her chest so she could do a treatment. This photo is of us doing a needle change in the back of our car - with determination you really can live a life with chronic neurological Lyme disease, you just need to work around the problems when they pop up.
Lyme Disease has been on TV a lot in the last couple of months - here are some of the stories…
Today Tonight
Mystery Disease Cover up ((13/2/12)
http://au.news.yahoo.com/today-tonight/health/article/-/12892469/mystery-disease-cover-up/
Lyme Disease Victims Ignored (14/2/12)
http://au.news.yahoo.com/today-tonight/health/article/-/12905203/lyme-disease-victims-ignored/
Lyme Disease Compensation (21/2/12)
http://au.news.yahoo.com/today-tonight/video/watch/28373368/
Death Linked to Lyme Disease (Babesiosis case at Canberra Hospital) (19/3/12)
http://au.news.yahoo.com/today-tonight/video/watch/28655046/
Lyme Disease Mystery Deepens (family flying to America for treatment) (23/3/12)
http://au.news.yahoo.com/today-tonight/health/article/-/13248586/lyme-disease-mystery-deepens/
Lyme Disease in the suburbs (in WA) 20/4/12
http://au.news.yahoo.com/today-tonight/health/article/-/13484117/lyme-disease-in-the-suburbs/
Sunday Night program
Lyme Disease Outbreak (26/3/12)
http://au.news.yahoo.com/sunday-night/transcripts/article/-/13264989/lyme-disease-outbreak/
Lyme Disease Outbreak update (4/2/12)
http://au.news.yahoo.com/sunday-night/features/article/-/13237505/lyme-disease-outbreak/
J is back on crutches again (she won’t let me take a photo). One of the problems with Lyme is that it means your body heals from injury very slowly, and so it is taking a long time for her foot to heal from the injury on April Fool’s day earlier in the year. Hopefully it will be better soon.
We have a new member of the family - this is J and Scratch (short for Scratch Fury Destroyer of Worlds who is a cat in the online comic PVP). Scratch has melted our hearts and brought much happiness to our week :-)
H’s hair has been falling out in big handfuls in the last week or so (not sure which medication is causing that), so we took the plunge and cut 15cm off her hair today in an effort to try and stop it falling out so much, and discovered this style really suits her. It seems that there is often a silver lining that just needs to be discovered.
Yesterday I had a call from a lady I visited in hospital a few months ago who has become a friend. When I visited her I told her I’d eat my phone if she didn’t have Lyme Disease (based on her symptoms and history) - it turns out I don’t need to eat my phone, because she’s just been diagnosed with Lyme (and sadly it looks like her daughter has it too). I’m sad that she’s been diagnosed with Lyme Disease (if I had my way, no one in the world would have to battle with Lyme Disease), but glad that she has a diagnosis and can get appropriate treatment and get better, especially since her symptoms are life threatening. Here’s to her journey to healing :-)
Kierryn having a go on H’s new super charged wheelchair. It’s not as easy as it looks, although he was getting the hang of it & getting up some speed :-)
A bit blurry, but this is our good friend (and adopted family member) Kierryn carrying H up three flights of stairs so we could see his new room on campus - thanks for all your support Kierryn, you are a legend. ps it was worth it, your new room is very flash.
The girls have been working on their Queen’s Guide award for the past four years, and they have finally submitted their reports for assessment (we should know the results in 6-8 weeks). Their reports total 31,000 words and 410 pages combined! A HUGE achievement for anyone, but superhuman when you are fighting Lyme disease at the same time. Very well done J & H, we are all very proud of you!!!
I just had a phone call from Girl Guides threatening legal action if H mentions publicly that she was bitten by a tick on a guide camp and got the Australian strain of Lyme Disease. She is heartbroken. She has loved Guides for 10 years & is currently writing up her Queen’s Guide reports. Girl Guides runs a world leading leadership program for girls, so it is so sad that they are taking such an aggressive stance to protect their reputation, rather than working with H to promote tick awareness.
HAPPY EASTER - I hope you have been good so that the Easter Bilby brings you lots of chocolatey goodness on Sunday. If you want to loose some weight and feel good at the same time, consider donating to the Karl McManus Foundation for Lyme Disease Research for a gift for your family & friends :-) www.karlmcmanusfoundation.org.au
J hurt her foot at work, so ended up on crutches. Thankfully it is healing quickly.
C visited H at the Zita Mary clinic when she was getting her needle changed & C brought an extra friend (he filled the new wheelchair completely). It gave everyone at Zita Mary a smile :-)
The new wheelchair even comes with a tool kit!! Given that it cost $16,000 I’m not surprised. Thankfully the ACT Government is paying for the wheelchair. Thank you very much ACT health, we truly appreciate it, now if you could just pay the $740 each week for H’s treatment, then that would be even better - you know, like you do for cancer patients, diabetics, people with HIV or even leprosy.
