Its Rare Disease Day 29th February

On the 28th February  every year marks Rare Disease Day.  This year its on the 29th February - Leap Year.  I have two - Tuberous Sclerosis and Lymphangiomiomatosis.   When I was young around 6 I had some suspicious lumps removed from my face.  I remember having them and then not having them.  I know … Continue reading Its Rare Disease Day 29th February

Barca D’Alva and a wee bit of Lemon juice and a ton of whiskey!

The afternoon after our jumper shopping expedition in Regua we set sail for  the town of Barca D'Alva.  The following day we would be heading to Salamanca.  Some of us went to the  top deck to see the 3 bridges in all their glory.  The sun was shinning.  Yet the wind chill factor must have … Continue reading Barca D’Alva and a wee bit of Lemon juice and a ton of whiskey!

Peso da Régua and our quest to buy a jumper

A couple of days before we had berthed at  Peso da Regua around 6pm so those that wanted could  visi the Douro Museum. Muriel and I had decided not to visit.  It had been touch and go whether we would get their in time for the tour.  Also it was freezing and staying on the … Continue reading Peso da Régua and our quest to buy a jumper

Invisible in Melbourne. WHAT’S IT LIKE TO LIVE HERE WITH CHRONIC ILLNESS?

Sheryl from https://www.achronicvoice.com is hosting an Invisible Link Up.  When Sheryl tagged me in this I was like yes please I will do that.  A great way to learn what it is like for others living around the world with a chronic illness.  I have several chronic illness along with a couple of rare diseases.  I have learnt … Continue reading Invisible in Melbourne. WHAT’S IT LIKE TO LIVE HERE WITH CHRONIC ILLNESS?

Lam Awareness

The month of June is coming to a close.  June is Lam Awareness month.  Sarah from https://www.travelbreatherepeat.com has done an amazing awareness program each year for the month of June.  Below is my piece this year.  Do go over to her blog and check them out.   https://www.travelbreatherepeat.com/physical-therapy-with-lam/   Thank you for reading and following.     … Continue reading Lam Awareness

World Wide Lam Awareness Month

  Can you say Lymphangioleiomyomatosis? Let me break it down for you - Lymp -angio -leio- myo -ma - tosis.  What a mouth full.  Us Lammies and the medical profession call it Lam.  So much easier don't you think! What is Lam  or Lymphangioleomyomatosis you ask?  Here is the link to the Australian Lam organisation. … Continue reading World Wide Lam Awareness Month

Klippel Feil Syndrome (KFS) & Complex Migraines & Gastroparesis

Today is Rare Disease Day all around the world.  I would like to share with you a friend of mine Erin and her post for Rare Disease Day 2018.  Erin has an amazing blog over at https://achronicspoonful.wordpress.com/2018/02/27/rare-disease-day-february-28th/           The 28th of February is Rare Disease Day. It’s a day designed to raise … Continue reading Klippel Feil Syndrome (KFS) & Complex Migraines & Gastroparesis

Lam Lung Disease and Tuberous Sclerosis

  Its Rare Disease Day on the 28th February so I wanted to share a bit more about the  two rare diseases that my youngest daughter and I have.   When I was young around 6 I had some suspicious lumps removed from my face.  I remember having them and then not having them.  I … Continue reading Lam Lung Disease and Tuberous Sclerosis

A huge thank you to our followers

Today WordPress congratulated our blog on obtaining over 500 followers.  We have a lot more of course as some people follow the blog via email.   We wish to say thanks for your comments, likes and sharing. You can catch us on Twitter and also Instagram. I also have a page at bloglovin and a pinterest account.  Your all welcome to … Continue reading A huge thank you to our followers