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Shout what really gets you angry!!!!
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JosephineO
Community managerGood advisor
@InPain1956ย I am very sorry to hear about the pain you're going through, sometimes it is a matter of fighting for what you think you need so perhaps don't stop hassling the doctors to get the xray that your deserve. Don't forget that we have a forum dedicated to living with chronic pain, you can find it by clicking HERE. There are discussions and tips all about dealing with pain.
ย @stortfordrose1โ Don't feel like a burden, that is what Carenity is for, talking to people who understand what you're going through. It isn't easy dealing with a chronic condition and you should be proud of yourself for managing despite the difficulties.
@Izzyjamalโ I hope that your scooter comes soon and your difficulties can lessen a bit. We feel for you here at Carenity and are always wishing you the best <3ย
ย
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Josephine, Community Manager
Izzyjamal
Good advisor
ย TO ALL MY FRIENDS!!!!!
I had a double Medical Appointment yesterday first with Kim my Psychologist that showed interest in my idea of writing a Book!!!!!
Then Physiotherapists did the horrendous scope visual of my breathing system..... not good news painful ๐ but needed!!!!
Waited 4 hours for a Paramedic to bring me back home!!!!
AND THIS IS THE โSHITโ ย HEALTH SYSTEM!!!!!!!
Finally the soon to make me happy ๐ but with horrible side effects on my legs Iโm all OEDEMA!!!!!!
Well my Friends I AM โPISSED OFFโ!!! PLEASE APOLOGISE MY LANGUAGE.....
To be continued......
ย
Izzy ๐๐๐๐๐
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Isabel Amaro
nineteen_gale
Good advisor
@Izzyjamalโย
Hi Izzy
sorry to hear about your long wait to be brought back and the pain with the scope. Hope you are feeling a bit better today. You have got the scooter to look forward to. Hope it arrives soon. What book are you going to write. That will keep your mind occupied. Good luck with it.
Hugs
Christina
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On grounds of my very ill health, I wish to terminate my membership with Carenity. Thank you all for all the support from everyone and wish you all good luckk
Izzyjamal
Good advisor
Good Afternoon Christina.
Hugs ๐ค and Kisses ๐๐๐๐
Received today my new Laptop from Apple it was a Grant from Muscular Dystrophy!
Now I can start my book I want to write my story from being well and suddenly SMA.
I want to raise awareness about Neuromuscular Disorders that are Genetic!!!!
People need to understand what a Person suffers INSIDE and not ON YOUR OUTSIDE!!!!!
I have still nothing because People donโt know nothing about Genetic Disorders!!!!
Finally the Sun โ๏ธ came But I suffer so much because it causes oedema in my limbs!!!! My legs are on fire itโs so painful ๐!
To be continued.....
Hugs ๐ค๐ธ๐ซ๐๐๐น๐๐๐๐
Izzy.
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Isabel Amaro
nineteen_gale
Good advisor
@IzzijamalHi izzi
Hi Izzi
am so glad that you have received your new lap top. I admire you for wanting to writeย a book and raise awareness of our Neruo muscular disorders . Yes, a lot of people are ignorant of the condition and do not appreciate what the sufferers are going through. Well done my girl. i wish you every success in writing the book. it will keep your mind active and give you a purpose in life. Now you are waiting for your mobility scooter so you can go out and about. Do you need oxygen 24/7. Are you oxygen dependent?
I have done a lot of work today and i am shattered. i watered the back and the front gardens, and they are big gardens. i even jet washed the patio and now absolutely shattered. That is why i am sitting down at the desk with my lap top.
Take care and get busy with your book.ย
Love and hugs to you my friend.
Christina
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On grounds of my very ill health, I wish to terminate my membership with Carenity. Thank you all for all the support from everyone and wish you all good luckk
Izzyjamal
Good advisor
Hello my Lovely Christina,
Im not on O2 yet. I have a Cough Assist Machine with me that I use 3 times a day. Itโs to try to help me not to have so many Chest Infections.
But my Flat needs Painting and I canโt get a Grant for it. I have a Quote but still have had no joy in finding a Grant for it. I keep up with my search daily.......
Lots of Hugs ๐คย
Izzy
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Isabel Amaro
Angus23
Good advisor
@Izzyjamalย Hello there I know fully how you feel. I have lupus and other conditions like osteoporosis. I not only have put on loads of weight, but I have fractures in my spine which have made me bent over and added to me looking much, much older than I am, it is heartbreaking, for anyone dealing with these conditions without us having other issues, that on top affect our mental well being. My thoughts are with you and wish I could offer you words of wisdom to make you feel good about yourself. But I have yet to find it during all my years of having these health conditions.
nineteen_gale
Good advisor
@Izzyjamalโย
Hi Izzi
I understand about the cough assist machine. yes, it would certainly help to prevent mucous building up and cause chest infection. Do keep fighting for the grant to have your flat painted. Are you on Pension Credit? it would help accelerate if you are.
Wish you good luck my friend. have you made a start on writing your book yet? No news of your mobility scooter yet?
take care my friend. lots of hugs
Christina
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On grounds of my very ill health, I wish to terminate my membership with Carenity. Thank you all for all the support from everyone and wish you all good luckk
Izzyjamal
Good advisor
HELLO MY LOVELY CHRISTINA,
Will keep fighting donโt worry!
Waiting for the Mobility Scooter yet!!! My Orange Posh Coupe!!!!
Yes already started writing the book. Need help revision and a Publisher.....
Need to Google for these!!!!
Have a peaceful night My Dear.ย
Take care of yourself.
Hugs ๐ค๐ค๐ค๐ค๐ค
Izzy ๐๐๐๐๐
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Isabel Amaro
nineteen_gale
Good advisor
ย
@Izzijamal
Hi Isabel
I am so happy that you have started writing your book. Good luck with finding a publisher. You are an inspiration to all. Wish you every success. Hope your mobility scooter arrives soon.
Keep smiling and take care of yourself.
Love and hugs
Christinaย
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On grounds of my very ill health, I wish to terminate my membership with Carenity. Thank you all for all the support from everyone and wish you all good luckk
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Izzyjamal
Good advisor
LMorning My Friends!
Happy Easter ๐ฃ to all.
Please take some time and โshoutโ loud here if you suffer/live with a Muscle Disorder and what do you do every day, please!
HAPPY EASTER ๐ฃย
ย
HUGS ๐ค AND MY LOVE ๐ย
Izzy.