FRUSTRATING 😩

[MAHGS]

So finally on big birthday trip abroad with husband . Due to start Benepali end of September but due to hospital mix up -delivery date finally set for 29th November . Steroid injection & Naproxen ( & other meds) whilst away to tide me over 😥

All well & good - nooooooo.!!!!

Had a missed call while on plane from Health Care at Home - think it must be to arrange nurse visit .

IMPOSSIBLE to get through . For a 9am UK call - I will have to call at 3 in the morning here.

Looks like I will now have to wait until I get back at end of November & will not start until well into December .

Trying hard to enjoy this break but am aware each month that passes more damage is being done to my hands . I know I cannot take the Naproxen without stomach pains starting .

I am a patient person but this is getting ridiculous 😥

[Matilda_1922]

Sorry to hear of your plight. I was in Greece when I received a call from healthcare at home. Fortunately the time difference is 2 hours in front of uk. Called them back to arrange delivery date.

Hope you start Benepali soon. I’ve had my second shot yesterday.

Not sure if benepali suits me. First week ok this week feel strange

Hope you start it soon

Matilda x

[MAHGS in reply to Matilda_1922]

Really love to know how you get on with it going forward 😊Think we all want to get back to some semblance of normal - or a new normal .

As my bloods do not reflect my active disease - I have been told Benepali might not work and I will then try others . Happy Days 😁

[Paula-C]

Have you thought of emailing them?

[MAHGS in reply to Paula-C]

Ooh no I haven’t - good thinking 😁

[MAHGS in reply to MAHGS]

Will google their email . Thank you - Obv left my brains in the plain !

[MAHGS in reply to MAHGS]

Duly emailed -fingerscrossed

[Paula-C in reply to MAHGS]

Glad to of helped......enjoy your holiday. xx

[Ali_H]

I am impressed with your fortitude and strength to carry on regardless. If there’s nothing to be done until you return try and put things on the back burner - I hope you get great enjoyment and full benefit out of your holiday.

Happy birthday!

Ali

[MAHGS]

Thank you Ali for your kind words - I will . 😁

[Ruth12345]

Ooow. Even though even the trials and tribulations of this disease have followed you, I really hope you have a FAB time.

[MAHGS in reply to Ruth12345]

😊 Thank you

[Hidden]

I am so sorry to hear of your issues and hope it didn't spoil your break away.

It is important to feed back to both your hospital and the homecare delivery company your dismay and distress as this will help them improve their service.

I would suggest writing to both your rheumatology team and H@H so that it is on record.

Good luck with your new meds. Remember if you need any support do get in touch with NRAS we can also put you in touch with someone else that has been on the same medication if you have any concerns etc.

[MAHGS in reply to Hidden]

Thank you for that Clare .

It would have helped if I was told in the voicemail what it was about . 😥

I guess I just do not want any more delays as we are running up to Christmas.

Mx