Hi,

Gosh, I disappear for a couple of days and all goes MAD! Will attempt to catch up with posts but have not had a brilliant couple of weeks..

Firstly my grandma died of lung cancer on Friday and so have been trying to sort all of that out - it wasn't a shock when she died.. but the house is apparently still empty.

However, I am stuck in uni because the doctors refused to let me home until today.. I managed to get a horrendous pressure ulcer on my bum (eg visits from the nurses every day to redress it, thousands of antibiotics and was not allowed out of bed) it is clearing up so/so now... I am now only left with a hole going through my buttock.. (nice! the photos are SO impressive)... They have now said I can go home (just didn't mention the short 4/5 hour car journey) and I am now OFF bed rest! YAY The boys have been brilliant though (the ones that broke my electric wheelchair!) they have been carrying me from my bed to someone elses bed so I can remain included (and yes I know how dodgy it sounds.. but it is not like that - we just figured if I wasn't sitting it was still bedrest!)

Bloody pain/ Dystonia means I can't eat - have managed to lose over a stone in about 10 days because I can't open my mouth (orimandible dystonia) and it is just SO frustrating!

So - any advice for healing pressure ulcers with RSD? or in fact for managing a non opening jaw as I do NOT want an NG placed.

Hope you are all ok and getting festive!

Rosie xxxxxxx

rosie, i am so sorry to hear of your grandmother's passing.

all i can tell you about the pressure ulcer is to stay off it. depending on how deep..which i hope yours isn't...can require debriding..and packing. heal it from the inside out.

can you drink anything? straw? sheesh....hon i am so sad you are dealling with all this.

very gentle (((((((rosie)))))))

thank goodness for your boys!!

Frogga,

I am new here and I just wanted to let you know that I am sorry for your loss and all that you are going through.

I will remember to keep you in my prayers.

I hope that you are will be feeling better soon.

Sincerely,
Judy

so sorry to hear of the ordeal you have been through..... i have no idea what would help you, but it seems like you have a great support system.

get lots of rest, and heal up soon.......thoughts to ya.............

i admire your courage to continue with your schooling......

Hi Rosie,

Just saw your post, how lovely you're back, but so sad about your grandmother. I'll write more tomorrow, it's bedtime and I'm knackered...that ulcer sounds absolutely horrid. Had any more thoughts about the DBS?
xx all the best

Hi Rosie,
My goodness you have had a rough week. I am very sorry as well about your grandmother (nana). The mighty one takes the most beautiful flowers for his garden.

I hope you are healing well. Though out this whole ordeal I have had infections too. Not in my bum, at least not yet. I am just getting over the cellulitis in my right eye.

Please make sure you are well taken care of. We care about and love you. Big Hugs, Roz xxx

Rosie,

My deepest sympathy on losing your grandmother. Even when it is expected it is still tough.

I really hate to hear about your all of the other horrible things going on with you and I sure hope they can find something soon to relieve some of that pain.

It is great that you will be able to go home but please take it easy and try to stay off that pressure sore as much as possible. (of course I know you already know that but had to say it anyway. It's a mother thing..LOL)

Happy Holidays to you and I hope you can find some enjoyment in it even with all of the horrible things you are dealing with. Oh BTW your friends sound so great and you are a very lucky lady to have them, and I know they are very lucky to have you.

Big Hugs Rosie,
Janet