Lupie Talk - Starting Women Only Chat Group & Book/Film Group (Men and Women)

[Bellaflowe]

Good evening, everyone.

I've written a few posts over the last few years whilst undergoing diagnosis and treatment for CNS Lupus. I've had lupus nephritis for 14 years and after dealing with that as an 11 year old, I just got on with everything. I had my flares, my dark days and my days when I felt like I could finally be 'normal', although that never lasted long! I've been in denial so many times, pushing myself to breaking point when I should have listened to my body instead of my pride and my friends. But, it's hard isn't it? When you want to do something and you simply can't. It's tough and it's painful and it's heartbreaking. The last few years have been hell, and I mean real hell. Being so terrified of suffering that badly again, that it feeds your anxieties and insecurities like a three course meal. I've been in pain that I can't even describe. My personality completely changed. I had migraines so excruciatingly painful that I couldn'the open my eyes for days on end. I spent every day doing nothing and feeling like such a failure. I've been there and I know that so many of you have been there, too.

I want to open up a platform to talk about our daily lifes. Our illnesses and first world problems. Our friends and family who may think they know better or who have supported us and deserve praise. Our failures and our achievements. AND MOST IMPORTANTLY - Something every day which makes us smile or laugh. Be it a cup of tea first thing in the morning or your child saying something funny.

First of all, I want to ask - Does anybody live in Edinburgh, The Lothians or in the surrounding areas?

Secondly, I want to ask - Would anybody be interested in starting up a girlie chat group on here or a Facebook page to share our daily lives? The bad, the good and the funny? (As well as still being able to share on here, of course! I'm not trying to redirect you from this wonderful site! Facebook is a bit easier to access for some people to talk, share photos and have scheduled daily chats with all of us!)

- Just wondering if anyone would be interested in starting up a page for women with lupus. I don't mean to exclude men and I do apologise for that. The reason I want to begin a 'girls only' group, is because there are certain health problems caused by lupus (or 'sister illnesses') that are a bit sensitive for some of us to talk about around men, like being unable to have children. I want to form a group where we can talk about everything that troubles us, healthwise or otherwise, in a safe and supportive environment. Women together. Please do let me know if anyone would be interested.

Also, if everyone is not already asleep due to the essay-like length of this post, I would like to propose another idea. Due to my lupus, I have a lot of time of my hands. On my bad days, my joints are too swollen to walk or the butterfly rash on my face makes me too insecure to go outside (due to people pointing and staring when I do!) I've always loved reading and watching films, and when I'm having a bad day (as described above), I love to lose myself in a good book or film. So, would anyone like to join a book/film group if I set one up? I was thinking of beginning the book group with a book I've been meaning to read for ages. It also happens to be one of my all time favourite films. STARDUST. Any other suggestions welcome! Let me know if you'd like to join and I'll happily set up a group. When life gets tough, travel to another world filled with mystery and magic. Yes, I did just say that extremely cheesy line.

So girls, please let me know. If you have any ideas you'd like to propose, please do! I'd love to hear from you. Even if you don't want to join anything, just chat with me. I'm always looking to meet new friends!

All my love and hugs,

Suzy. Your fellow lupie sister. X

[xSarahx]

Hi. Im 32 and just bee diagnosed with lupus and just left hanging. No explanation or advice treatment plan. I have most of all the symptoms for SLE lupus I have a young family and suffer in pain every day. I have fibromyalgia, livedo reticularis, raynauds and now lupus. I suffer daily headaches and migraine, bowel problems, dizzy spells regular, dry mouth, hair now snapping off and joint and muscular pains etc. I got my second lupus test done on 1st Feb. I still haven't heard back from the hosp. So I called to speak to my rheumatologist who took my bloods and he wasn't in that day. So another doctor from his area called me and told me no more tests have to be done and to go to my Gp for raynauds tabs. I told him my gp said I'm not allowed to take these as we were waiting on lupus results as they would cause a heart attack. I told the rheumatologist this and he said I don't see why not. So he said he would talk to someone and call me back next week but as of now I have lupus which is protein in blood and no further tests required.this is what he stated I've ohone. So Obviously I wasn't happy and stated that if not treated it can be life threatening. He then said well not from these notes. So go to your Gp for medication for your other problems.

So needless to say I'm banging my head of a brick wall. Not a GP or rheumatologist or nothing have explained to me even what lupus is or what my treatment will be or nothing. I just don't know what to do the stress of not knowing anything or what stage my lupus is at is making me ill with worry and stress. I struggle to hold jobs down with the pain and migraines. I am starting a new job soon and feel I need the support or treatment plans etc from professionals who know what they are doing. But it just seems no one wants to help and aren't going to check my organs or nothing. Do you have any advice as I really don't know what to do. I am not on Facebook but would be willing to chat more for support or advise etc. Thanks for taking the time to read this. Hope it makes sense. Could write list of my pains etc but would be here all day. Hopefully you can help shine some light for me. Thanks again.

Sarah

[Bellaflowe in reply to xSarahx]

Hi Sarah,

First of all, let me apologise for the late reply. I'm afraid I've been tucked up in bed for the last few days with a severe sinus/ear infection and an awful migraine, so I haven't checked my emails. I'm here now, though, and from the sounds of it... well, you're going through such a horrible time. And that's putting it mildly. Unfortunately, we've all been through this and it's awful. You have so much on your plate with a young family, trying to hold down a job AND starting a new job very soon. On top of dealing with a new lupus diagnosis and incompetent doctors. I realise that I'm telling you things you already know, and I'm sorry for that, it's just that I feel your pain so much and I'm so sorry that you're having to go through this without any support.

The best advice I can give you right now is to NOT give up. Don't take 'no' for an answer. You keep calling your rheumatologist until you actually get to speak to him and you voice your concerns. Don't let him make excuses for himself. You tell him that the treatment, or lack of it, you have been given is so unbelievably poor to the extent of complete incompetence. You have been diagnosed with a life changing illness you hadn't even heard of before now, an illness which can rip lives apart and you don't even get an explanation of exactly what it is, what it's doing to your body and how it will continue to affect you. No treatment plan. No humanity. No nothing. In my experience, sometimes you have to fight fire with fire when politeness gets you nowhere. You need answers. In times like this, I often felt so upset and so completely exhausted by it all that I didn't want to talk to anymore incompetent doctors and useless receptionists. I just wanted to curl into a ball and scream and cry. You are so very tired and I know this. But you must not give up. You keep calling both of them. Be a nuisance. Because it shouldn't have to be like this. You should, as we all should have, been treated with more humanity. This is not okay.

I apologise for the rant I just went on, but I feel so angry for you. How many of us have to suffer before doctors realise the pain we have to deal with and the changes need to be made? You have a right to proper care and treatment and you're not receiving it. You tell them that.

In my experience, talking about it does help, if only to release some of the emotional upset. It helps to talk things through, just to get them off your mind. I am here if you have any questions at all, but most importantly, I'm here if you just want to talk. You can private message me. Really, even if you just want to get something off your chest. All of us have our worries and moments of real sadness, and it's important to talk about it. If you want to, of course. Keep calling them and demand an explanation for why you were never informed of your blood test results, along with everything else. And do let me know what happens. If you get nowhere, you can file a complaint against your doctors.

Sending hugs,

Suzy

[xSarahx in reply to Bellaflowe]

Hi Suzy

Sorry to hear you haven't been well. 🤒 Migraines aren't good at all. Shut the world out huh

Thanks again for your message. Your words are helping keep my strength up. Other rheumatologist haven't even called me yet. So looks like I have to wait til the two weeks is up and chat to my own one. And when he's back believe me I'll be calling constantly every day til I speak to him.

Will defo be filing a complaint with my local gp once I have spoken to hospital again. Not happy at all!!

Start new job next week so looking forward to getting out the house. Hopefully it will help distract me for a We bity.

Hope your feeling much better. Thanks again for the message means a lot. Xx

[Bellaflowe]

Hi Sarah,

Sorry for the late reply - I've been trying to set up this Facebook group for ladies with lupus. Sort of like a group to chat about our days and anything that's worrying us. I'm hoping that more ladies will join and get support from the other members. It's also going to be a book group, for those who are interested. I know you don't use Facebook, but if you ever felt like joining, just to use the group, you would be very welcome. I'll give you the link, just in case. Just copy and paste this into Google and it will come up;

@thebutterflysanctuaryLupus

Anyways, thank you for you kind message back. I will always reply to any message you send me and like I said, if you have any questions or just want to talk, just send me a message. You are never alone in this, I promise. I know you're having such an awful time right now and you're feeling so down, as anybody would in your situation, but you are never alone. Every day, when my health got really bad and I felt like I couldn't carry on, my mum always said to me, 'Courage is not having the strength to go on. It is going on when you don't have the strength.' I think about those words every day when my doubts kick in and I feel completely hopeless. It must get better AND it will. Your life will not always be like this. You will have much better days and even long periods of time when your lupus and symptoms are under control. I've been there. I managed to work and study, I managed to have a life and go out with friends. But I knew my limits and I rested when I needed too. But I lived happily and it will happen again soon for me, as I know it will for you. Never give up hope. You seem to me like a very strong, wonderful woman, with a family who loves you dearly. If you struggle a bit with family members or friends who don't quite understand lupus and the way it affects you, I suggest reading them 'The Spoon Theory' by Christine Miserandino. It's a short story about how one woman explained the way lupus affects her to her friend. Maybe you've heard of it and maybe you haven't, but I wanted to tell you about it just incase.

Keep doing everything you've said - don't give up calling your rheumatologist and give him hell when you do speak to him. And definitely make a complaint with your GP. Demand explanations and proper care and treatment. Yes, the NHS is in a horrible state - but that's not your fault. And you've been very fair with your doctors. They could at least show you the same courtesy. You keep at it and don't give up when you get nowhere with them. Keep going.

And my advice - keep sharing and keep talking. It really helps.

I hope everything goes well for your new job and it makes you feel better being out of the house more. I'm rooting for you!

Love and hugs,

Suzy xxx