So the latest is : So last week I spent every day at... - NRAS

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So the latest is

allanah profile image
18 Replies

So last week I spent every day at the hospital ! As I recently said a professional patient lol.

So diabetic wise more bloods tests and see doc in two weeks but he's happy the abscesses cleared with antibiotics.

Hand doctor upset more fibromas have grown on my left hand. So I need more radiotherapy to both hands then in 6 months potential surgery and guided xrayvinjection of thumb joints.

Rheumy , well it appears abatacept isn't helping me much and also I may have drug induced lupus, vasculitis . So onto Rituximab , methotrexate, leflunomide , loads if blood tests this week.

Kidney/ bladder scan non physical problems which means they will do a cystoscopy and I have a fatty liver ftom the reaction to drugs !!!! ( probably the insulin )

So positives diabetic more care, radiotherapy and Rheumy more care, I'm so lucky to have them!

Wheelchair comes son and big news I bought a Hyundai i10 automatic with heated seats and heated steering wheel for the old joints! The new model with bright blue interior , white outside and I'm chuffed to bits!!!! And I saw my kids today so lovely day!

So positives new regime, more help for hands and diabetes .

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allanah profile image
allanah
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18 Replies
sylvi profile image
sylvi

Things are moving for you and i hope they sort you out soon darling Hugs from me.xxxx

allanah profile image
allanah in reply to sylvi

Thanks lovely x

miss profile image
miss

Happy to hear your being well looked after. Hope all your issues will be greatly improved. Hope you had a super Mothers day. I was spoilt to huge dinner out and pressies . Xxxxxxx

allanah profile image
allanah in reply to miss

Oh fab , what are your pressies? I got a hand blender and good mixer m! My old ones were about to go on fire lol and a beatiful candle with matching black long matches very cool. A bottle of pride co and flowers and a bug hotel ! I like to see birds and bug and it's very unusual! , and a beautiful base that matchesy new candlesticks !! So I'm lucky too

miss profile image
miss in reply to allanah

Chocolate yummy. .and a lovely plaque with some lovely words on it. So nice to be spoilt. Sounds like you were spoilt to xx

allanah profile image
allanah in reply to miss

Yummy! My diabetic nurse wouldn't agree tho lol !! And words mean so much x

miss profile image
miss in reply to allanah

Yes the words do mean so much. Brought tears to my eyes x

hatshepsut profile image
hatshepsut

You've definitely had a time of it, fingers crossed that the new treatment options do the trick, you're about due for a bit of good luck!

Look after yourself! Mavis xx

allanah profile image
allanah in reply to hatshepsut

Thanks M xxxx

allanah, you face many medical challenges but do so with such a positive attitude and within this, you always go out of your way to help others. You are a real inspiration. :) x

allanah profile image
allanah in reply to

Aw that's kind! But maybe my hubbie wouldn't agree!

nomoreheels profile image
nomoreheels

I hope your new drug regime sorts you out once & for all & everything else reacts as it should. Sounds like they're got it all planned out for you. You've had a rough year & deserve a break.

When white van man pushed the back of our car in the insurance supplied a BMW with heated seats. They were wonderful, especially as we both have dicky backs & we searched until we were sick of looking when we were changing to an auto to find one with them with no joy. Wouldn't have managed without the one we got though with h not being able to drive just now. They'll definitely be on the must have list though next time we're looking to change the one we have. You'll love it & plus the bonus of heated steering wheel.... swanky! x

allanah profile image
allanah in reply to nomoreheels

I know I'm really looking forward to it

Smiler53 profile image
Smiler53

Oh Allanah, sounds like it's all happening for you. And you sound so upbeat. Car sounds great and pleased that you had a lovely day. X

So much going on for you Allanah, but sounds like they are keeping a good eye on you and you are being positive. Any Glasto plans this year?

allanah profile image
allanah in reply to

I've spoken to Oxfam and I'm going as a guest to relax at Latitude on the Attitude is Everything disabled site but then hoping the meds are sorted out a bit by the end of August and volunteering to steward at Leeds festival on the disability platforms! I'm not well enough to be a supervisor as that means walking but who know maybe next year if the Rituximab suits me I may be able to supervise.

As you know Attitude and Oxfam are great to steward/ supervise got as they take your mobility and joint issues into account and give you loads of help and support such as they put up your tent for you, they have festival busses to get you around. There is a tent with clean areas for your meds, electric charging points for wheelchairs, mobiles etc and they really value your experiences of disability to improve the sites for all types of disability, heating etc.

so yes roll on new treatment and summer . Whilst Glastonbury is on it's my mums 80 th birthday so we are going to a party then to Saltzburg, will use assisted access and my wheelchair so hope it's lovely . All the trips are accessible too! So yes can't wait on some heat!

in reply to allanah

Ah great stuff, knew you'd have it all planned out! Enjoy :)

Azabat profile image
Azabat

Great gods, and I thought *I* had an a-z set of ailments! I'm so glad you've got a good care team, and I deeply envy the new car! (even in Canada they don't let blind girls drive. Discrimination, I tell you!) I'm seriously surprised you have any more blood for them to test, though. Hugs! xxx

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