In need of positive vibes!

[Susieliz39]

Hello all, I hope everyone is as well as can be and your preparations for Christmas are well underway! 🎄

I think maybe this could be viewed as a quite a self indulgent post, which isn’t usually my style at all but I know after reading lots of your posts that are full of positivity and sound advice that I’m in need of some of those vibes! 🤦‍♀️

I posted a couple of months ago asking about ILD which I had just been diagnosed with and asked if anyone had received cyclophosphamide treatment for it. Well... I should have started treatment a month ago but due to one infection after another and two teeth extracted it has been delayed. Not great, as it was last February that I had my scan, which showed extensive scarring 😳. I now keep wondering how much more damage has been done since then 🤔

Fingers crossed, I’m due to have my first infusion on Monday but it is dependent on results received this week. It just seems, I can’t get going on the road to improvement or if not improvement, limiting further regression. I’ve received the consultants report this afternoon too and it makes grim reading when seen in black and white, hence the prompt to write to you lovelies!

I now fully understand the term ‘lupus warrior’. Until now I’ve been quite fortunate that my diagnosis has been mild and although I’ve had a number of symptoms that have impacted on me, this is by far, testing my inner strength! I’m usually quite resilient and able to handle what life throws my way but have to be honest this has thrown me off track at the minute.

Anyway, enough of my ramblings....I hope you all keep well and enjoy the season with your nearest and dearest. Some good tv coming up.... the final of Masterchef for one and Strictly for another!

Best wishes

Sue x

P.s if anyone is patient enough to explain how to upload a photo to the site it would be appreciated! For the cat lovers out there, I thought I’d share one of my ‘fur baby’ who is such good company at the minute!!

[svfarmer]

Hi Sue can’t offer any advice about cyclophosphamide but sending positive vibes to you for Monday and hope all goes well. We would love to see a pic of your cat when you write a post down in the left hand corner you will see a little blue camera if you press on that you can then upload a pic of your fur baby ❤️

[Susieliz39 in reply to svfarmer]

Positive vibes received...... thank you! 🥰 I’ll look to upload a piccie of her, she’s an old lady now, 18 last summer. I’m thinking one day, I’ll get a dog. Probably when I retire. It was going to be a choice between a Welsh terrier or a cockapoo but after seeing little Mira, schnauzers are on the list too now! We saw one in the hotel we were staying in during the summer... what a cutie!

[svfarmer in reply to Susieliz39]

Oh yes I can definitely recommend schnauzer,s their temperaments are so lovely and they are the most affectionate little soles. I had a cat who lived till 21 and your cat at 18 is doing marvellously x

[Meg52 in reply to Susieliz39]

Don't forget about cavalier king charles spaniels. They are the most gentle, affectionate little dogs, I have had them for 20 years and couldn't imagine not having them. PS, my friend also has a miniature schnauzer and would say exactly the same about her little dog 😆 If you do get one make sure you go to a breed club who will have a list of breeders who do all the health tests before breeding.

[Susieliz39 in reply to Meg52]

My sis in law had a cavalier and loved him dearly 🥰

[Krazykat26]

Hi Susie 🤗 hugs n positive vibes from me to u 🤗🤗I have no knowledge of ILD or of the infusion but I did just want to say that it can be a long hard road living with autoimmune disease..much of the time it can feel like taking one step forward n then two or three steps backwards!! Unfortunately it's the nature of the beast 🤦

This is why we r lupus warriors most definitely coz we don't know what's gonna be thrown at us next!!

U are resilient by nature..give yourself time to adjust n prepare yourself for the infusion on Monday..I really do hope that it all goes well for u.

Try not to stress too much coz as we all know..stress drives lupus!! When u feel yourself starting to fret..take some deep breaths n try to focus on the now..take in what's around u..what can u hear..what can u smell..r u warm n dry..that kind of thing will help to calm an overactive worrying mind!!

U do have the strength but sometimes it takes a while to find it 😉

Be kind to yourself n treat yourself gently..this is a worrying time but you're not alone..you've got us lot!! 🌈😽😽Xx

[Susieliz39 in reply to Krazykat26]

Many thanks Krazykat for the positive vibes!! 🥰 All that you and SV Farmer have said is so so true and what we would say to friends. Isn’t it funny that when you can’t see the wood for the trees, it’s really hard to give yourself the same advice🤔Wishing you all the very best Kat. Xx

[Krazykat26 in reply to Susieliz39]

It certainly is..but I find that when I admit to myself that I'm lost..that's when I start to find my way again. I hope that by opening up to us u too will find the strength to carry on through 🤗

Best wishes to u Sue 🌈😽😽xx

[Susieliz39 in reply to Krazykat26]

Such reassuring words Kat...... thank you 😘

[Krazykat26 in reply to Susieliz39]

You're welcome 🤗🌈😽😽xx

[stiff19]

Sorry I’d missed this post 🙈 nothing self indulgent at all, sending heaps of positive vibes and all the best for Monday🤞 Being a warrior doesn’t mean you cant lean on others ,you take care 🙏 stay strong and best wishes💪🤗x

[Susieliz39 in reply to stiff19]

Many thanks for your support Stiff, it really is very much appreciated. Take care Sue xx

[stiff19 in reply to Susieliz39]

I hope you let us know how you get on 👍🙏 it’s my pleasure 🤗

[Meg52]

Hi Sue, I have lupus with ILD and pulmonary fibrosis. I was supposed to start cyclophosphamide or rituximab but for various reasons haven't been well enough yet. I want to wish you well for Monday, please keep us updated on your progress. Good luck, Meg 😊xxx

[Susieliz39 in reply to Meg52]

Hi Meg...,a girl after my own heart, or lungs 🤦‍♀️ ( don’t give up the day job, Susie) On a serious note, we are obviously in the same boat as I too have fibrosis and treatment has been delayed for over a month... my bod not playing ball 🙄

I’ll certainly update you and.....ditto. Anxious times really. Thank you for your best wishes. Hope you are able to begin soon on the road to ‘recovery’.

Take care

Sue xx

[Susieliz39]

Thanks Stiff for your kind words. Think I was feeling sorry for myself yesterday after receiving the letter from consultant. More like my self today, heard starting treatment on Monday, so onwards and upwards! ( that’s how I feel at the minute anyhow but ready for change of emotion at any point on the lupus rollercoaster!! Xx