MUSINGS ON SUBCUTANEOUS IMMUNOGLOBULINS ON A RAINY DAY

[lupusinflight]

Hello on this rainy World Lupus Day, mes amies. I love it when the weather chimes in with my symptoms. I am the rain today. I have had an ongoing roller coaster with respiratory infections since Christmas; every few weeks on antibiotics calms things down, and then up she flares again. All the same, I got the coughing and sneezing nicely done and dusted by 3pm, when I joined Mandy Springham, Paul Howard in his wolfish attire, and a host of lupie strangers, for (my first) zoom pilates class. Thanks Mandy!

A couple of weeks ago, I attended my training session with the immunology nurse to teach me how to perform the acrobatics of self administering subcutaneous immunoglobulins during this Co-vid era. I was anxious before, and resigned afterwards, and now, at home, with EOLHPC by my virtual side, armed only with some degree of gritty humour and a mirrored shake of the head. What is our life? This, in all its peculiarity and particularity, is our life. This our belly. That, the needle. And the two must meet, for all the reasons we know, but can't ever fully understand.

[EOLHPC]

😍👏👏👏👏👏🤩💐💐💐💐💐❤️🍀❤️🍀 Coco

[lupusinflight in reply to EOLHPC]

Love you xxxxx

[EOLHPC in reply to lupusinflight]

👍😆 INDEED your video DOES play from the link you’ve posted above..🦡 & I are 🤗 looking forward to watching it again before our SUBCUT session this Tuesday...cannot thank you enough for producing this video: it truly HELPS A LOT ...THE answer to our 🙏🏻S💐💐💐💐🥰

[misty14 in reply to EOLHPC]

Good luck to you Barnclown for Tuesday. Have replied to Lupus in flight as well. Will be thinking of you, subcut cuties. Hope it goes well. Xx

[EOLHPC in reply to misty14]

😍👍always thinking of you too❤️🍀❤️🍀❤️

[misty14 in reply to EOLHPC]

Thanks so much Barnclown . Xx

[happytulip]

I cannot believe that you have to inject that much solution sub-cut without a pump!!!! I understand why you have to under these circumstances but it still is difficult for me to get my head round. I now understand what Coco was saying about the goose egg!

Hats off to you guys. You are really amazing. You must be so patient!

[EOLHPC in reply to happytulip]

😍 means A LOT to me, ht...I know you REALLY understand the significance of these protocols etc...your affirmation REALLY helps me interpret the significance of doing SUBCUT IgG + helps me to keep having to do it in perspective...this pat on the back from you has made my day: am feeling 🌈😆💫...THANKS ❤️🍀❤️🍀❤️🍀

[happytulip in reply to EOLHPC]

I can't take my hat off to you guys enough. Not just as a nurse who was told 'you never inject more than about 2mls sub-cut into a patient because it's so uncomfortable," or just because you guys don't have a syringe driver like most people having a sub-cut infusion would. But because you are so brave to be doing it on your own keeping that pressure on a 50ml syringe for so long!! And that's after you've learnt the aseptic non touch technique in such a short time!!

(And because one day soon, you guys might be teaching me how to do this as you know Coco 🤪)!

Best of luck to you guys x

[EOLHPC in reply to happytulip]

YOU’VE DONE IT AGAIN: 🌈made my day 💫...You’re THE professional + 🦓voice of experience! 🦡 & I are onto our 2nd DIY SUBCUT IgG this afternoon...with shaista’s + our other PID friend’s help, I’ve typed up a step by step guide document that fits in with Shaista’s video very nicely ...so am feeling more confident this time. When you’re ready, let me know if you’d like to see it! ❤️🍀❤️🍀

[happytulip in reply to EOLHPC]

Well done Coco, facing adversity in a time of crisi with a smile in your face and always thinking of how you can help others.

You really are marvellous!!

[EOLHPC in reply to happytulip]

if I really am (I TRY) it’s down to inspiring, thoughtful, fun folk like 🌟YOU 💐🤝✊🤞✌️🥰

[misty14]

So sorry lupusinflight you've had a miserable time since Christmas with such persistent respiratory infections. Really brings us down and then you've had to take on this self-administering subcut treatment!. You and Barnclown have done so well in learning this and I wish you both lots of luck for your next go on Tuesday. Will be thinking of you the Subcut cuties!.

Hope you can go back to hospital soon (if you want to)

TAKE CAREXx

[cuttysark]

Watched this in Cocos post and it was truly excellent! It is the only way to help others to understand what is involved in those procedures and then when we are faced with such challenges ourselves ,are less afraid.

Thanks so much! xx

[DRunnerchick]

I watched your brilliantly produced and courageous video. 💪🏽🙌🏼👏🏼⭐️💖🌈💐😘 🦋🦄🦓 You & Barnclown (&🦝) have what it takes to get this done ✅ and pull it off flawlessly! I am not rediagnosed with anything (Coco can fill you in) so am not on subcut, but you two will settle in to this and it will become as the nurse said, no pain, just an hour out of your week 🤞🏼🍀❤️⭐️ Hang in there!

D🏃🏽‍♀️

[stiff19]

reality of the brave and strong. 🤗 a great virtual friend in coco by your side , good luck to you both , Best wishes 🙏x