The Wren Project: Hi lovely Lupies, I hope that you... - LUPUS UK

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The Wren Project

CecilyParsley profile image
10 Replies

Hi lovely Lupies, I hope that you are as well as you can be and looking forward to the Christmas festivities?

Just a quick post to say that today I had my first session with the Wren Project. I had a lovely volunteer, warm, encouraging and such a good listener. I just wanted to say that if you are struggling, lonely or just want to talk ( I love to talk) they are there.

Many thanks to Wendy for sharing their project on Facebook

Have a wonderful Christmas everyone. I will share photos of my boys Christmas Pawty on Saturday when I get them xxx

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CecilyParsley profile image
CecilyParsley
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10 Replies
lucas3lady profile image
lucas3lady

hi CEcily parlsey -can you please say a little more about what the Wren Project is? Thanks

Alida_Bennett profile image
Alida_BennettPartnerLUPUS UK in reply tolucas3lady

Hi Lucas3lady

You can find the Wren Project here: wrenproject.org/

The Wren Project provide support to anyone with an autoimmune condition, including the 1-2-1 support that CecilyParsley has mentioned.

Kind regards

Alida

CecilyParsley profile image
CecilyParsley in reply tolucas3lady

Hi Lucas3lady sorry I thought everyone knew about it except me lol. Yes it was so easy to refer myself. Completed a form online, received a phone call and answered a few questions and a schedule was emailed to me. Essentially it is a telephone call once every two weeks from a volunteer who listens.

For me it was a real release. If I talk to my hubby about my fears for my health I am moaning or worrying him sick. If I talk to friends I get the usual just get some fresh air/ go for a walk/ take your mind off things and you will feel better. Such advice however well meant increases the feelings of isolation. These forums and the amazing people I am fortunate enough to have “met” here understand only too well but are suffering too and there is always the worry that you do not want to be a burden.

I spoke to a lovely volunteer for 50 minutes. I had had a miserable pain filled day and was unusually tearful. When the call ended I was giggling. Absolutely priceless xx

Alida_Bennett profile image
Alida_BennettPartnerLUPUS UK

Hi CecilyParsley

We know the Wren Project and we do refer members of the lupus community to them where we think that might be helpful.

For those asking for more information, you can find them here: wrenproject.org/

The Wren Project provide support to anyone with an autoimmune condition, including the 1-2-1 support that CecilyParsley has mentioned.

I hope this is helpful.

Kind regards

Alida

RosieA profile image
RosieA

Sounds like a wonderfully supportive experience. I am so pleased that you have found such support. Great.

I said, I'd feeback about my consultation. It was great - need to double my Azathiorpine. I am so lucky with my consultant - she is led by symptoms and listening alongside bloods and other tests and explains things so well. xx

CecilyParsley profile image
CecilyParsley in reply toRosieA

Yes it did me good. I am unusually tearful currently. I am getting rectal bleeding and such awful pressure pain. Despite all efforts I cannot get a GP appointment. I feel I might have a prolapse of some kind but with 20+ hours waiting times at overcrowded A&E I am anxious about going there.

No one has checked my bloods. I asked the surgery nurse and she said my red cell count was raised and my liver enzymes were raised but no GP`s available to discuss it with. No contact whatsoever from Rheumatology. I have just as I feared been left without monitoring or care. Just telling someone Hiw frustrated and uncomfortable I am helped, at least fir a while.

I am so pleased that you have had a positive experience with your Rheumatologist. It is all we need isn’t it? Just a bit of care and consideration. How much Aza do you currently take? I am up to 150 mg daily now xxx

RosieA profile image
RosieA in reply toCecilyParsley

I am at a loss for words about your level of care. Have you tried 111, at least from there you should be able to talk to a Dr. You should not, nor should they ignore rectal bleeding. 111 service should also be able to access your blood results incase they are related. Let me know if you manage to get some help, won't you.

I'm heading up to 100mg, I think 125mg would be my max as they're doing it by mg per kg. If that doesn't do it then it's a rethink.

I hope you're having a little bit of a better day. By the way the Isle of Wight oak... tomatoes are indeed divine. I've opened my second jar!!! xxx

CecilyParsley profile image
CecilyParsley in reply toRosieA

Hi I got a call last night from my lovely GP . Sge had been the only GP in the surgery and had worked from 8.15 to 6.30 pm with no break or lunch yet took the time to call me. She said come and see me Tomorrow at 10.30, I won’t have much time but I need to examine you. I said but there are no appointments, she said let me worry about that. Bless her. So today I was examined. She could find no haemorrhoids or fissures to explain the bleeding, no obvious prolapse but obviously could not exclude it. She said my colon was rigid and full of wind so diverticulitis exacerbated by the Aza is another possibility. I also have blood and pus in my urine but it is not severe . She said she would again write to Colorectal and request that I am seen. She prescribed antibiotics for me to have over the Christmas period in case the burning gets worse. I have an Urology appointment next week so hopefully they will order scans as my bladder is not emptying fully. That way it will be very apparent if my bowel, vagina or bladder have prolapsed and I will finally get help 🙏🏻

I am delighted you love the oak smoked tomatoes too. I am addicted xxx

RosieA profile image
RosieA in reply toCecilyParsley

Phew, result! Thank goodness. It sounds as though you will be getting much needed support and investigations. You are going through so much. Do let me know what happens at Urology. xx

CecilyParsley profile image
CecilyParsley

I sound like a pathetic person . My husband says stop thanking the Doctor so much but honestly it is dire. I had a call with the Pharmacist and they are niw unable to prescribe more Aza as despite several requests Rheumatology have not forwarded the Shared care paperwork. I have until Boxing Day so in real terms I need it to be sent before next Friday. I am so angry. They really have been unsupportive and let me down on every level. Big girl pants on on Monday and I will be on that phone. I already know the Rheumatology secretary will nit help with anything and the Helpline isn’t open until Tuesday and takes two days to get back to me. It is so not good enough 🤬🤬 xxx

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