So fed up: Hi folks I haven't posted in a long... - LUPUS UK

LUPUS UK

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So fed up

CarolMcl profile image

Hi folks

I haven't posted in a long while but have been keeping up with reading others.

I'm sorry but I really just want to vent as feeling quite low and I suppose angry at the moment. We all know it can take a long while for diagnosis but I genuinely feel if I was listened to I wouldn't be at the stage I am now.

By the time I reached diagnosis I also had mild interstitial lung disease and fast forward a few years, it's now a lot worse. Went in for a lung biopsy near the end of October and was in hospital for 5 days, was out for 1 and ½ days then readmitted to another hospital as I was in terrible pain and remained there for a further 2 weeks. Had numerous X rays, further CT scan and bloods daily to the extent my veins were in a terrible state, required ultrasound to locate them. Doctors were unsure of the cause, infection markers high but CRP levels more so at 378, couldn't decide if it was pleurisy or the fluid in my lungs had become infected. Was on IV vancomycin for 2 weeks which was horrible and oxycodone slow release along with as required for breakthrough pain. I've been home for 2 weeks now and was able to stop the oxycodone yesterday although still experiencing pain. Got a call this morning from GP practice that I've to go for further blood tests as my ferritin levels are elevated, I'm just hoping it's to do with the increased CRP levels. Both my respiratory and rheumatology consultants have decided that I've now to commence on rituximab infusions to hopefully help with both the lupus and lung disease. Biopsy showed up both areas of pneumonitis and fibrosis but at present they want to concentrate on the rituximab before looking at further medication for the fibrosis. I've got to the point that I just can't see an end to it.

I'm so sorry for the long rant and I hope you're all as good as can be 😘

29 Replies

Hi Carol I really feel for you and it’s no wonder your feeling so fed up - in and out of hospital , I myself don’t have rifuximab infusions but there are loads of people on here that have had them and it’s really helped so I’m sure someone will reply to you - and don’t be afraid to vent , it’s good to vent , we all need a little support from time to time- sending a big hug to you 🤗💕

CarolMcl profile image
CarolMcl in reply to svfarmer

Hi svfarmer, thank you so much for your reply, your hug was greatly accepted ❤️

Oh Carol 🤗😔This is the place to rant...get it off your chest..we all understand n can empathise when everything becomes such a tough struggle!!

You've been through such a lot recently it's no wonder you're feeling despondent and upset.

I really do hope that the rituximab helps u..I have no experience of it myself but I've read about other members here who have found it to be beneficial. I hope it works it's magic for you!! 🤞🤞🙏

Please don't be too tough on yourself..you've been through a lot recently. I'm glad you're home now coz at least you can take things at your own pace in your own environment..hospital is horrible..think we can all agree on that!! Constant pain gets a girl down..no matter how strong we are it just gets too much at times 😔BUT you are not alone..you've got all of us here rooting for ya lady!! 🤗🤗

I hope you get the treatment soon and that it has a positive effect. Be kind to yourself, rest up and most of all treat yourself to whatever gives you some pleasure/comfort.

Gentle 🤗🤗🤗🤗🤗to u 💜🌈😽😽xx

CarolMcl profile image
CarolMcl in reply to Krazykat26

Hi Krazycat26, I am so glad to be away from the hospital, such horrible places to be in, and I'm a nurse!! Well was a nurse, I decided to come off the register in August after shielding and the decline in my health. Thank you very much for your kind words ❤️

Krazykat26 profile image
Krazykat26 in reply to CarolMcl

I was a nurse too!! 😹It's most definitely hard to be on the receiving end I agree totally!! I was a mental health nurse as they call em now..back in my day I was a Registered Mental Nurse (RMN) think I think suited me better!! 😹I left the register in 2000 before I became ill n I have to say I've never looked back!! U take care 💜🌈😽😽xx

CarolMcl profile image
CarolMcl in reply to Krazykat26

Really, I was RMN too, qualified in '85. I've not really had time yet to miss it but if I'm being truthful I don't think I will either, such changed times. Keep strong and take care too ❤️ x

Krazykat26 profile image
Krazykat26 in reply to CarolMcl

Small world eh? 😹I qualified in January '86!! Gave 18yrs n then left when I felt the big circle had turned n I was getting despondent!! Omg...did u have to relearn the Mental Health Act? I did coz it changed in '83 I think? 🤔😹Seems a lonnnng time ago now 🌈😽😽xx

CarolMcl profile image
CarolMcl in reply to Krazykat26

Very much so, I was August '85. Yes it changed in '83, I walked about with notes in my pocket for what seems forever lol. Didn't start to learn the act until the latter 18 months of training as we had to complete 18 months of general, midwifery and learning disabilities first x

Krazykat26 profile image
Krazykat26 in reply to CarolMcl

Yes...it changed during my training too!! We had a brilliant sister on the secure unit at the hospital where I worked. She devised a trivial pursuit game purely based on the revised MHA and we used to play it..she was wonderful with us students..strict..very strict but she got us all through that very difficult time!! "You MUST know the Mental Health Act...no room for error!" That's what she would say to us!! 😹😹🌈😽😽Xx

CarolMcl profile image
CarolMcl in reply to Krazykat26

Sounds a great idea, unfortunately I never had anything like that. Our tutors were so laid back they were horizontal as were the majority of trained staff 😝

Krazykat26 profile image
Krazykat26 in reply to CarolMcl

😹😹Hilarious!! Yes she was the only one really who took it all seriously!! Mind you I got it n later in my working life I worked in police stations with drug users at the point of arrest so my knowledge of the Act came in very handy..thanks to Sister n her little home made bits of cheese!! 😹😹It's been great chatting to u Carol about the 'good ol' days'. I hope the new treatment works for you. Stay strong 🌈😽😽xx

CarolMcl profile image
CarolMcl in reply to Krazykat26

It has been, thanks so much for putting a smile on my face. Stay strong too 💪 x

Krazykat26 profile image
Krazykat26 in reply to CarolMcl

You're welcome 🤗 keep smiling 😁😁🌈😽😽xx

Oh Carol you rant as much as you need to as you are very entitled . You’ve had a horrible time of it and pain is very frightening . Being in hospital is incredibly depressing and sucks any remaining life out of us so great that you are home . Please try and be super kind to yourself , baby steps and don’t forget to use any distraction techniques that work for you .

Well done for stopping the oxycodone .

We are all behind you and totally relate to not being able to see the end of it . So cliche but try to just sort out today as that’s tiring enough 😊. Sending you big hug and please post again to keep us all updated on how you are doing ❤️💋xxxx

CarolMcl profile image
CarolMcl in reply to Tiggywoos

Hi TiggywoosOh it definitely is a depressing place, especially with the pain and them not being able to fully identify its origins. Unfortunately still in pain everyday, albeit not as bad as during my hospital stay. Was desperate to stop the oxycodone an knew I had to get off it after GP suggested upping the dose!! Last thing I need is addiction added to the list. Hug was really appreciated ❤️

It’s okay to rant and this is the place to vent. You are amongst friends and people who understand your pain. So sorry you were not listened to, it’s so frustrating. Living with a long term illness I believe you learn to know your body and therefore deserve to be listened to .On a positive note I would store this knowledge and next time you feel unwell you can say after last time when I eventually had a lung biopsy I refuse to be ignored again !

I hope now you are home you start to feel some relief , sleeping in your own bed after a hospital one..hopefully feels good

Take care M x

CarolMcl profile image
CarolMcl in reply to Maddymay65

Hi Maddymay65

You are correct, I definitely will not be ignored again!! I've already got a list for each consultant when I see them this month, I've got so many unanswered questions. It's just awful that we have to fight so much as well as trying to live as normal a life as possible ❤️

Maddymay65 profile image
Maddymay65 in reply to CarolMcl

Hi CarolMclYou are right , it isn’t fair.

But You go.. hit em hard.. ask lots of questions , question and query it’s your health and life not theirs.

If i can just share with you, I had a horrendous flare two years ago and the consultant refused to give me a steroid injection or indeed any intervention. I dragged myself through the next 6 months ,of hell and kept a diary , I finally got an injection and improved within 2 weeks!, when it happened again this feb but much worse he again disagreed to steroids.I told him straight I’m not putting up with this and that I wanted it put in my notes that he wouldn’t give me steroids and that I had notary evidence they helped the flare remiss. I got the injection and bingo

I then decided life was too short and changed consultant with the help of this fabulous support group and I have not looked back .

Hard work which we shouldn’t have to do but if you want to fight you have all the support you want right here.

Sending good luck and positive vibes M x

CarolMcl profile image
CarolMcl in reply to Maddymay65

Hi, that's absolutely shocking to hear, so sorry you had to go through so much before being heard!! My initial problem was with the GP service, who constantly fobbed me off with various excuses, even though a couple of years earlier I was diagnosed with Raynaud's at the hospital after an initial frightening attack.....I lost all feeling in both my hands whilst driving. Anyway they didn't put 2 and 2 together until a couple of years later, then they started to listen but as I said before, it was too late for my lungs. I've since changed GP and he has been very supportive. My respiratory and rheumatology consultants are both really good as well but I feel that during the hospital admissions rightly I suppose, their focus was on what was happening after the surgery and I was just informed that the decision had been made to commence rituximab once I'd recovered, they're hopeful it will be January. Blood work was done but no real discussion of what it involves, hense my two list for each consultant this month.

You have every right to vent Carol. What a rotten time you are having. I think we all at times get to saturation point with our health. It drags you down when pain is constant. I truly hope the infusion will help you. Huge Cwtches xxx

Hi Cecily parsley

Thanks very much for your kind words, I very much appreciate it. I really hope it helps too although I've got to admit, I'm very apprehensive about commencing it ❤️

Of course you are. You have had such a dreadful time and the last thing you want is unwanted side effects. People here who have been on or are on the infusions can better advise you but I truly hope life gets easier for you lovely xxx

Thanks again for your kind thoughts ❤️ x

Thanks to all of you again for your kind words, it's been very much appreciated and humbling to know there's so much kindness 😘😘

I have rituximab and it has been life changing for me. I was in and out of high dependency units with serious illness and now I can lead as near normal life as I did before. Follow the medical advice given to you and I wish you well with the treatment.

CarolMcl profile image
CarolMcl in reply to Philosophy1

Hi philosophy1. That's great to hear it's helped you so much 😊. I will definitely listen to all advice just a bit apprehensive at the moment because I've not had the chance to discuss it as yet

I have no helpful reply, but are thinking of you 💗🤗🤗

CarolMcl profile image
CarolMcl in reply to daisydayz

Thank you very much 💗

Hi, glad to hear it has worked well, I'm hoping it will too 🤞

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