Ok im going insane inside of my little head....not literally cos I've been there before and I don't have time to be mental at moment!

Inside my head it's like a whirlwind, everything flowing around and around broken bits of my life and home and family situation. Things are flying off everywhere and smashing up my mind. I mean I know I'm not actually going cRAzy, it's just the ra and the steroids and all my fears are very much on full view right now....so I've come back to earbend you guys again. I'm so sorry lol I have just written/scribbled 5 pages on paper to try to make sense of what's in my head...it's what I do...as you probably already guessed?? ;) Haha but it is awful. There are so many things I can't talk to anyone about. Well I can and have been because I can't seem to control it, but my children really don't want to hear it all. And some of what I need to discuss just becomes much bigger problems if I ever do say anything to anyone :( there are so many things i deal with daily that I simply shouldn't have to. I've always took on more than I could handle....always say yes, even when I can hardly breathe or move I will still take on another responsibility. I made it my life's work to see people happy healthy and loved....and now, the situation (see recent posts) I'm in? I just don't feel like I can keep it all up, plus all the additional appointments and arrangements to be made, literally 3 appointments a day have come through since I left hospital....I wish I was superwoman. I wish I didn't have to get so crippled up by this disease that I can't do everything i want to be capable of....and I'm sorry my time is running out and I've spent so much energy money and time looking after others that my own family have gone without. And now I'm here and my kids will be left without me and in all honesty no one cares. The mother of the girl I foster was told the other day about my diagnosis and the fact I won't be here long, and the fact that for five months I've had no benefits for her daughter and have thus been using my disability benefits to put food on the table rather than make payment the scooter that's sitting here unused....her reaction to this was to delete and block me from social media, go buy a mobile for herself get her hair and make up done by her devoted daughter (yes the one I'm raising cos she couldn't be bothered) to go out clubbing and sleeping with several guys at once, on her "disability benefits" it boils my blood to be honest and if I dare to say what I really think, my "foster daughter" gets all upset at hearing her mum put down. I realise I sound a bit whiney...but what about me? Thank you to anyone who sits thru that lol

19 Replies

  • You have a right to feel the way you do. I would probably groused to your 'adopted daughter' about her mother and most likely more in the position your in. Good luck dealing with everything. Sorry you don't have long.

  • Thank you phoenix2 I'm sorry I know it's depressing, I certainly didn't have all this in my fantasy life plan of when I turn 40 (hopefully that's a year away). I wouldn't Be in this situation if I would ever just say no or call it like it is when someone is taking advantage, but it's my biggest character fault. Just never could say no, always trying to help others. I guess it serves me right people always told me I should stand up for myself more. Other people wouldn't be in this boat now. I was asked to foster her at the point I was being diagnosed, they all knew I was too Ill to take it on but they still put it on me anyway...I wish I'd thought of myself now...even though it's this bad a situation I still can't bring myself to make her go back to her family...but it would be nice if I didn't feel all my efforts are wasted on someone else's teenage daughter, who still loves her mum and wants her to love here back....my kids will one day (much sooner than we imagined) my kids will miss my love and they won't have that choice. And they need me so much :(

  • Hi again Cass 🙂

    You really have got too much to contend with at present, haven't you?! I think coming in here and letting it all (or as much as you're comfortable with) is one of the best things you can do. Like you say talking (or writing) about things can help, really help.

    I used to get really wound up by other people and their inherent stupidity / nastiness - but do you know what? They just ain't worth it. Let them be selfish pigs.

    One of the (few) inherent advantages of being male is the ability to rationalise any situation with the use of just two words:

    f#%k it.

    Try it, it feels great sometimes.

    If you feel comfortable talking about it, do you mind me asking what the prognosis is with regards your lungs? I know you keep alluding to the fact that you don't have long left, but what have they actually said? Please don't answer if you aren't comfortable to.

    All the best.


    PS I love orchids, simple (like me) white phalaenopsis sp. I had a window sill full of them and they got some kind of fungus. Oh well.

  • Oh my I wrote it all out word for word what was on my ct scan results and discharge notes, then accidentally deleted it :( lol anyway I'll try to be more brief. Ct results stated that there is ground glass opacity across both lungs with signs of rheumatoid related swelling in the lung associated with interstitial thickening of the lung. 7mm mediastinal lymph nodes in the prevascular region and a linear atelectasis seen in the lower right lobe. The diagnosis list goes through all my other diagnosis and in the list is rheumatoid related changes in the lung, plus exacerbation of asthma with infection. There is also a section which is for my doctor recommending (which is now booked) further blood tests and hematologist referral as my lymphocytes count was high, but this may go of its own accord as I get better from the infection....though a week out of hospital and I am already aware of my lungs declining again...I've been aware and struggling with it some time. The drs didn't seem eager to assume it was that (I guess cos it was so unlikely) but I had mentioned on admittance that I felt that my lungs had been getting worse for months. In fact I'd been for lung function testing just one month before admittance. The drs at hospital wanted to just lay the blame on the ra drugs until the scan results came back. No dr as yet has actually told me when I'm going to die, or even that it's actually terminal yet..I have further scans booked and lfts etc and I have the respiratory team coming to me soon and I hope to god that means I can have oxygen at home cos I think it will keep me home longer. The things is o knew about this condition/complication already. As I had suffered with methotrexate poisoning back in October 14 and my right lower lobe was showing some damage back then. They assumed it was just the methotrexate and that as I improved off of it I would be ok, I'm now quite concerned that this was when I should have been (and most patients with this are diagnosed at the point where there is one lobe or one lung showing "rheumatoid changes" sadly mines covered both sides. I know people say you shouldn't just look it up cos you scare yourself but everyone here knows well enough that with severe chronic diseases like rheumatoid disease....you need to be your own teacher and learn everything you can. I haven't been capable of returning to education and work since ra hit me but I am constantly learning. I guess I knew it was bad when the doctors looked worried and then they kept coming in and saying to me "you do realise you are very poorly? I'm always smiling and laughing and try to be as "ok" as I can be even if I don't seem so here but in reality I try to act like I'm ok haha and they seemed baffled but I've been struggling for two years with the most extreme onset of this disease you can possibly imagine. It seems every step of of the way if they told me 'thats not likely to happen, it's too rare, the side effects are 1 in a million will get methotrexate poisoning, one in a million born with a facial cmn birthmark or 1 in a million will get ra lung, enbrel was meant to have an 85% success rate and honestly it did help but clearly not enough... everything that could go wrong has. Even now all I'm allowed is steroids to supposedly control the ra and lung issue....but on 40mgs I'm swelling anyway...how is that even possible? I have hundreds of appointments to deal with in the coming two months so I guess I'll know more then. Xx thanks for letting me go on about it lol

  • You're more than welcome to 'go on about it' 🙂

    Blimey, that's a lot of 💩 to deal with.

    So, on the bright side (😀) you haven't been given a terminal prognosis yet? I know if someone was telling me this i'd think to myself 'no but I've looked it up you idiot', so I apologise for being 'that idiot'.

    But maybe there is still hope? I've always thought once a terminal prognosis was reached they would 'break the news' so to speak to enable the patient to prepare for the inevitable. The fact they haven't but have instead made you gazillions of appointments must be a positive, no?

    I know nothing about lung involvement so most of what you describe went straight over my head, I agree it doesn't sound good, but then lots of health stuff 'sounds bad'! Particularly when it's related to RA!

    I'm still going to stick to the 'there's always hope' line for now.

    All the best Cass.


  • Lol thanks ade yeah I totally agree with where you are coming from on this. No I haven't been told what my use by date is yet. Which is a good thing, because I'm sure if they were certain I was on my way they would have let me know and I doubt I'd have gotten out of hospital. And yes there is always hope, and there are several bits I "hope" will at least improve what my situation is right now (sadly right now today? I can't speak at all -blessings for some haha but it's because my breathing is bad) and that is that I know I need to be in hospital again, I'm just doing all in my power to try to keep going a bit longer so I can make sure the kids have everything organised. The damage done in my lungs already is pretty extreme, I've only found one other who seems to have the same level of widespread damage. But if I could cross my fingers I would do. That this is all a horrible mistake or that my lungs will get better....I don't know about the others with similar maybe they could chime in. Is it considered a terminal diagnosis, did the doctors tell you this is likely to kill you or how soon you are likely to die after diagnosis with Ra lung? My research into it is what's led me to my worries....as it probably would anyone, especially as the only information is things like this is fatal, end stage 2.6 years average survival, I wouldn't be so worried if it was when I was hospitalised two years ago and there was already a minor amount of damage, which is the time most people get that diagnosis, instead it's only now my whole lungs on both sides are completely covered in damage... I know everyone says walk away from the Google don't research. But I'm a uni student so I know how to research fully and not just scare myself with Wikipedia's ideas. I had already researched it before after the first bit of lung damage so I knew what the ct scan results meant and I knew what the drs were talking to me about. They quite enjoy the fact that I know my stuff and they don't have to translate everything with me. I'm glad they haven't said I'm going to die in such a such time....but I'm still very aware that two and half years is not enough to see my kids to adulthood and find myself frustrated that this wasn't dealt with earlier and now whatever options available will be all the more difficult. I'll know more definite details soon. Sorry if I seem to be one who just panics and diagnoses myself on the internet. I can understand why people would think that cos I know plenty who do....sadly in my case it really isn't like that. It's may seem unbelievable and extreme, believe me my whole lifes been this way, and unfortunately when I've tried to pretend these things aren't happening I usually end up in hospital being told how very very poorly I am....if they told me something was rare and unlikely to happen.

    ..it did! So I can't keep going on acting like it's all going to go away.

  • Don't think anyone on here thinks you are a self-diagnosing Google hypochondriac.

    And I know what you mean about there being a time and a place for your own research. I have been in the position where I have googled, and scared myself witless. Before my symptoms had manifested into classical inflammatory arthritic symptoms I was (after 3 months of returning to a locum GP and telling them I wasn't very well before I ended up asking the nurse at the health centre to do a FBC) discovered to be anaemic, quite badly 'for a young male'.

    The locum GP then referred me instantly to a consultant (private insurance meant the next day) who, as I had pain in my chest (turned out to be a pleural rub from coughing so much) decided I needed an instant chest X-ray etc.

    I was told that young men don't get anaemic unless they have a chronic internal bleed, have a problem with their bone marrow or never eat any food containing iron (which I most certainly did).

    I was new to this 'being sick' lark so went home and googled anaemia and promptly diagnosed myself with various serious possible outcomes. Mostly malignancies - aplastic anaemia springs to mind, you don't want that by the way.

    Anyhow, it turned out to be autoimmune related anaemia (they never actually explained any of this), but it seems to be a 'feature' of autoimmune conditions for a lot of us.

    So that was a bad time to do research, and the Internet was young so information was limited and harder to assess for accuracy.

    In your situation I'd be all over Google, trying to find out as much as possible to enable me to make informed choices about my future. As I am about my own condition, even if it isn't as serious as yours, I believe the more we know, the better informed we are, the better we are able to influence our own outcomes, hopefully positively.

    But I have 17 years more experience in health related issues now; I am far more adept at dealing with 'the system' and self-managing my own condition.

    Have you found any other online forums with people who are going through what you are? Can the doctors not put you in touch with any groups that may have experience, or have you tried approaching organisations like NRAS, Arthritis Reseach UK etc? I would imagine someone, somewhere must know more than your local medical team, if only you could find them....

  • It's ok i know you guys all have knowledge of living with disease. I don't think anybone case or condition is worse than the other ...each person's experience is always individual. And yeah most of us have learnt we must research our diseases....much like on the internet in general, it's more about being sensible and selective on what and how you search and of course you also have to wade through the many rare extreme possibilities there could be ...like my lymphocytes count was elevates and I'm going for further tests and possibly referral if needed to a hematologist. I've not gone overboard on that research because I know it could change once I'm feeling better and I also know that the extreme possibilities are very serious but I don't feel the need yet to jump on that bandwagon. The ra for me is definitely the thing that's my "big issue" it's that that's crippled me, it's been that extreme a case my Rheumatology consultant hasn't seen it so rapid and severe in someone so young. That's why they didn't want to say ra lung until the scan showed it. Statistics say I'm too young and it's too rare....plus I know my lungs well, I've been struggling for years feeling like I'm suffocating. So I'm pretty in tune. Like a month before I was admitted I had been telling my pulmonary consultant that my lungs were going wrong again and I'd been sent for lung function tests, if I have my bloods taken I can tell the phlebotomist which results will be skewed by how I feel....and in all honesty that is why I'm so afraid...I know my lungs are done :( and that's pretty scary

  • Am on hospital at moment....I t u. Looks like rare reaction to tocilizumab. Massive renal cyst.......into abscess. ...burst....toxic crap in intestines

    Too tired to say more but thinking of you

  • Oh hunny I'm so sorry, that's what worries me, every time we try these drugs that are meant to make our life better it shuts down another body part! Did you ever have any renal issues before hun? God bless you sending warm healing hugs xx

  • Hatshepsut.

    I can identify with renal issues - not pleasant.( have chronic kidney disease,exacerbated by toxic reaction to methotrexate)

    Hope you get the right treatment and are back on the road to recovery soon.

    Take care.



  • Sorry to hear that crusee that drug really should not be the first line of defence! Hope you are doing better now x

  • Yes thank you I am feeling better now I am not taking mtx any longer, and I don't miss the awful side effects one little bit- what an evil drug.Only problem is I am only on steroids at present so really need some other form of RA control but until my kidneys have recovered sufficiently I cannot have anything stronger.Hopefully not too much longer.



  • Yes mtx is evil. Prednisone has the double edge, it's life saving and killing all at same time

  • That's the trouble there's always a down side isn't there....?



  • You really need to step back and take stock. This is too much for you to deal with. I would suggest, as you obviously like writing, to make a list of all the things you do and put them in order of importance. You need to prioritise and deal with what is necessary and what is additional stress. Take a week, a few days or even a day on your own and systematically go through the list. Mark in green what you must do, mark in orange what could be reduced and mark in red what is unnecessary e.g. in the green section would be things like making food and eating, taking medication and attending appointments. In the orange section things like doing things for other people, doing unnecessary household chores and red section would be things like worrying about other people unnecessarily, not giving enough time to yourself and getting involved with things that increase your stress levels. You can do it and I strongly recommend that you do or you will be making more problems for yourself and you have more than enough to contend with. Good luck.

  • Ahh Sheila you are my kindred spirit. I actually have a whole book forming. Parts are all the things I need known, written will (it's funny cos I knew I was ill for last two years but I still never thought I was ill enough to write a will) there are sections for chore rotas, songs to remember, poetry I've written. And there is several pages of lists. I'm a lost maker by nature, but for several years I simply haven't bothered but that's why I get so baffled cos I can't organise my mind without my lists. Colour coding of importance is a fab idea and my kids work so much better with that sort of stimulus so I'll apply it to this roster I'm making, that's another thing ticked off my list haha. I think I genuinely would be handling this all so much better if there wasn't just so much additional baggage and baloney going on that I just feel is all wasting my time and energy...but yes thanks Hun I'm definitely in the list making groove lately lol

  • Cass, reading this just breaks my heart that someone with such a big heart is left in the position you find yourself in. Tell me, do YOU have a social worker? WHO speaks for YOU? Surely there must be someone who can tell all those who aren't willing to help and stand by you to just get out of the way and find someone else to spong off.

    You need as much help and support as you can get at this time. There has to be social welfare for you or local charities who deal with your particular problems. Forget about those who don't want to help and concentrate on your needs. It's not being selfish to need help and putting yourself first. If your time is short use it for yourself, for peace of mind. I wish you all the very best, Jean. XX

  • Thank you Jean. I must confess as I watch my world unfurl it's breaking my heart some. I mean I'm not afraid for myself really, I don't even want much I just want to be able to function to the best of my ability, use my time the right way and with the right people. I'm broken hearted because 1. I don't want to leave my kids without me to cope in this cruel world....and 2. How cruel people can be, even just neglectful, the fact no one even bothered to see if my kids needed help when I was in hospital, if people can't step up for us now, who will when I'm gone; however long away that may be, bare facts are I am not likely to make it to 70 ....I hope to get past 40 and my goalposts are I must see the kids into adulthood...that's at least 5 or 6 years...would be nice if I could see a grandchild born...I do have hopes. But I think you understand how those feel right now. I don't have a social worker, we really should have referred ourselves before but I kept holding onto hope that the meds would eventually work and I'd get back on my feet. I have one friend who is in social services disability care work. She's been a fab support and to my son, she's gone off and told a few people, like my foster daughter's mother. She has lifelong diseases she's always battled too and God bless her had already researched rheumatoid lung issues and knew all about it. Which is kind of special to us medical Marvel's when someone takes the time and effort to learn about what's wrong with you. She told them all what for, my mum does a lot of my talking for me too but yea I think it's time to call in some extra help. I'm waiting to see what the respiratory team are coming and doing for me. All the appointments are coming through for all the medical stuff...now I just need to get help with the real life stuff that still goes on no matter how sick I get. I really did need to offload and it helped to come here and just splurge my thoughts. Otherwise I'd scream and shout and ....well ive lost my voice haha

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