Sunday, May 22, 2011

Mondays with Rhianne

So I'll start with my potsy story. For me what happened was that around my 13th birthday, I started getting episodes of blurred vision that would happen for a few hours every few months.

Then in Sptember they very suddenly started happening everyday. I also suffered from extreme memory loss.

Then I went to a certain children's hosipital and got a convursion diagnosis and I was in the mental ward (fortnightly psych appointments) from December to Febuary (when the mental ward finally agreed I wasn't crazy).

Then in March I suffered from severe balance loss and was admitted to hosipital where I recieved my diagnosis.

Guys, I have recieved so many tests. I have worn three holter monitors, had an eeg, stress test, a heart ultrasounds, brain MRIs and MRAs, FULL DRUG SCREEN  , so many urine tests, I would say around 40 bloodtests and I am probably forgetting a few things. Oh, doctors like hitting me with something called a queen's square hammer. I think there are a few of them I just want to hit in the face.

Five facts about me:
1. I love playing trombone but can't with pots and vasalva induced syncope
2. I am a yellow belt in tae kwon doe
3. I have a labrador called Honey and a uni sex bird called Sammy Jo.
4. My personal best for doing a rubik's cube is 57secs
5. I secretly love dugongs

(a picture for Hannah who thought dugongs were cake)

Now onto the questions:
Tana: you asked what do you find harder the emotional or the physical?
It is definately the emotional. I hate having no control over body, unable to make definate plans and I have gone like a fortnight without leaving the house. Oh and I really hate I now have a walking stick. His name is sticky and he is really ugly. I need to pimp him up I think.

Miranda: what is the best non drug thing that has helped your pots?
Exercise! Atleast I have some leg muscles now. I do half an hour on my exercise bike. I also wears skins (compression tights that are waist to ankles) . In January I tried Bowen Therapy, I might try that again.

Before I answer your question I want to say:

Oh my gosh you are graduating! I am so proud of you Hannah! That is so flipping amazing. I know you have been going through a rough few days so I am really hoping you got to go to your thing tonight. Wait just got your inbox: you did! I love that. You should have seen my face smile.

Anyway and you asked: what is your favourite thing to do after a stressful potsy day?
When I feel like crap, I watch Degrassi. I have it series linked so every episode records, then when I am potsy I chill with my big, fat dog Honey and we have a marathon.

My question: what sort of mobility aids  do you use?
I use a plastic little stool to sit on in the shower. I also now have a walking stick because of ataxia (balance loss). It is so ugly. I hate it. They don't even make them groovy looking. Don't eighty year olds know that a red wooden top does not match a black metal bottom!

Anyway, tomorrow you meet our final hostess Logei. So keep smiling and keep trying!

1 comment:

  1. It's not just Hannah that thought that dugongs were cake, I did too!