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My story of systemic JIA

CarlyRenshawCarlyRenshaw Posts: 12
edited 31. Mar 2016, 04:47 in Living with Arthritis archive
My story of my journey so far fighting systemic juvenile idiopathic athritis.
When I was 16 I started to fee very unwell in my self, very weak and as time went on my symptoms got a lot worse I stopped eating, I was inconstant pain, my joints were swelling & I was developing a wide spread rash. I went to the doctors a few times with these symptoms and they did blood test but they all kept on coming back fine so I felt like I was being called a liar and that people thought I was making this all up when Deep inside I was suffering so bad and just wanted answers. I was in school at this point and the teachers started calling my mum telling her that I was loosing to much weight and that they was worried about me so my mum started trying to be tuff with me putting food in front of me and shouting at me to eat it because she felt I was being bullied or something because the doctors kept on saying there was nothing wrong with me, she was just a caring mother who did what any other parent would. As time went on the symptoms got worse I went annorexic, I couldn't keep drink down let alone food&it even got to the point where I physically couldn't move my self it was at this point where my mum thought enough was enough and I was rushed straight into hospital. At first they thought I had lukemia because of my symptoms but after doing a bone marrow biopsy and removing a lymphnodes from under my arm they diagnosed me with the systemic JIA I can't begin to tell you how guilty my mum felt and still does to this day. When I was going down for my operation because of how bad my systemic JIA was attack my organs and body I was told there was a chance I might not come back around I remember holding my mums hand as I was going under we was both crying and I said to her "I love you mum please never forget that" this is one flash back that breaks my heart I can remember it clear as day. Whilst having my operation I went into a coma and was sent straight into intensive care it was a long hard wait for my mum and it was destroying her so bad. After a while I did eventually come around again I cannot remember much but I can remember when I was getting a bit better after starting all different medications that I had to learn how to walk again, how to feed my self, build up strength again and so on this was so hard to do because I had completely forgotten how to do everything and my body was so weak because I had just been lay in bed sleeping for so long but I did it after spending 5 months in hospital I managed to get my self back on my feet and strong again. I left hospital on a high dose of prednisilone, methotrexate and anikinera these medications was working great for a short while but then they stopped and I started having flare ups again but no where near as bad as the first time because I now had a diagnosis. My flare ups would always include me going annorexic,having high temps a weak body & a wide spread rash some was worse than others although since being diagnosed with my illness because it has attacked my body in such bad ways I have nearly died 3 times but luckily enough I am still here today. It is frustrating because I always know when I am going to have a flare up always but doctors never believe me and this is the reason I have been left fighting for my life so many times. Just last week I went into a&e covered in a rash from head to toe, a high temp etc and I seen s doctor she told me I had urticaria and I started crying because this is what they had said to me in the past and it wasn't it was my systemic JIA and I was then left fighting for my life, so I explained to her that it wasn't urticaria it was my illness flaring up & i didn't want it to get to a serious point again but this doctor said to me no it's urticaria and just walked out of the room so I had no choice but to leave the hospital. Come the day after I could move at all out of bed, my temp was reaching 39, I was throwing up, the rash had gone purple head to toe and I was just seriously poorly. An ambulance was then called out to me I was red flagged instantly, hooked up to drips and oxygen in the ambulance and rushed straight into resuscitation where my consultant came down to see me and was shocked at what had happened just the day before in A&E and the state that I was in. He instantly told me I was having another serious flare up of my systemic JIA and I also had something called microphage activation syndrome which can be life threatening. To hear my consultant turn around to me once again and say "Carly your so lucky that you came into hospital when you did" absolutely broke my heart because of how many times I have heard those words be said to me all because a doctor that doesn't want to listen fobbed me off. My consultant sat down with me and the nurses and explained the situation he said "if Carly tells you anything is changing or getting any worse make sure you listen to her and buzz us instantly to come down to her because she always knows when it is happening but doesn't get listened to half of the time and she ends up in life threatening situations then like today" after spending a week in hospital on IV STEROIDS and other IV's and regaining my strength I was able to go home and after being home for 5 days it is all happening again so I have got to go and see my consultant later on today. I am now 20 years old and this fight had been on going my consultant says he's never struggled so much to keep someone's systemic JIA under control and found it so hard to find a medication that helps keep it steady. I have been trying all different medications since I was first diagnosed for example (methotrexate,anikinera,prednisilone,steroids&many more) but none of these medications have worked in the slightest so far I am currently taking 40 tablets a day plus methotrexate and anikinera injections most of the tablets are steroids but none of these are working which is why I had a bad flare up last week. This battle has been so hard and has dragged me down so much as a person and it is all mainly because there is not enough people "doctors/professionals" that are educated on this illness so they don't know what it is and don't understand, so like me when you do tel them what you have most of the time they make you out your a liar about your condition and spend you home with something totally different and then your just left until your flare up gets to its worst point which isn't good. I just want more people to be aware of this condition and be educated on it because when they are it will make it a lot easier for people suffering from it to deal with it because they won't fee so alone and so afraid of what will happen next.
The reason that I have joined this forum is because I would like to speak to other people suffering with the same or similar conditions

Comments

  • moderatormoderator Posts: 4,095 mod
    edited 30. Nov -1, 00:00
    Hi CarlyRenshaw,

    Welcome to Arthritis Care Forums. As mods we are here to help with any problems you may have on the message boards.

    There are lots of lovely people here with a wide range of experiences with arthritis and the problems of living with the condition. Just join in wherever you like you will be made very welcome.

    I look forward to seeing you posting on the boards.

    All best wishes,

    Mod Em
  • CarlyRenshawCarlyRenshaw Posts: 12
    edited 30. Nov -1, 00:00
    Thankyou very much I look forward to hearing people's stories and learning there different ways of coping :D x
  • CarlyRenshawCarlyRenshaw Posts: 12
    edited 30. Nov -1, 00:00
    Please could anybody who reads this post who has systemic JIA or any form or athritis post or private message me about your stories, coping mechanisms etc as since being diagnosed I haven't spoken to one person with the same or similar problems and I feel so alone, this is the reason I joined this forum to meet other people who are unfortunately suffering & to allow my self to accept that I'm not alone:-)
    Thankyou for taking your time to read my post if you do so and leave any comments or private messages it would be massively appreciated
  • stickywicketstickywicket Posts: 25,871
    edited 30. Nov -1, 00:00
    You are not alone, Carly. We all have some form of arthritis on here though not many were diagnosed with JIA. The ones who were tend to post on the young people's forum but then disappear as theu start to feel better. Nowadays, I would probably be diagnosed with JIA but, back in 1971 they said it was Stills. I've not had your traumas. In fact I've had a very good life But we have a newbie, young annie41, who seems to have been through a similarly difficult time. I'll bump her thread up for you.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • CarlyRenshawCarlyRenshaw Posts: 12
    edited 30. Nov -1, 00:00
    Thankyou for replying to this post stickywicket
    I know I am not alone but deep down that's how I was starting to feel because I had no one I could talk to who could truly understand.
    Thankfully enough to this forum and all of you welcoming,supportive people I now know that this is not true there's many many others like me out there fighting the same or similar battles.
    I am glad that you have had the chance to have a good life and do the things you've wanted to do through out your life. Although I am sorry that you have had to deal with stills as any kind of battle no matter how bad or how mild it is, nobody should have to experience them unfortunately to many people do.
    Thankyou for attaching the name of Annie so that I can read through her story and things I really appreciate your help
    Thankyou again Carly :)
  • stickywicketstickywicket Posts: 25,871
    edited 30. Nov -1, 00:00
    You're very welcome, Carly.

    I know you've had a really tough start to your life with JIA but, believe me, it's not all bad. Arthritis teaches us some valuable lessons such as resilience, perseverance, courage and that most valuable lesson of who our true friends are. Of course I'd rather be without it but not without those precious lessons. Life's complicated, isn't ir :D
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • CarlyRenshawCarlyRenshaw Posts: 12
    edited 30. Nov -1, 00:00
    Aww Thankyou I know it has been a really rocky start and a really hard journey but it's also made me who I am today and that's one thing I wouldn't change, maby I would have been a lot different if I didn't experience this but right now because I have experienced what I have the person I am today is someone my parents and many more are proud of and that's enough for me :)
    Exactly you have a clear point everything teaches you lessons in life if that be a good thing or a bad thing there is lessons to be learnt from everything and those lessons often teach you a lot just as this has done me it's taught me to value and appriciate life every second of it, to count my blessings and be greatful for what I have as there's always other people out there a lot worse off even though it's hard to see sometimes because when you have your low points you feel so hard done by and question why me but that's just being human I guess & it's also taught me who my real friends are and let's just say this the only friends that I do have are my mum, my sister & one actual friend that is it but as long as I have those that's all that matters eh.
    Life has its ups and downs for us all and throws some nasty things at us but there's a reason for everything I guess:)
    I hope your well and your health isn't to bad at the moment and i also hope you have a lifetime of happiness because everyone deserves that :)
  • frogmortonfrogmorton Posts: 25,127 ✭✭
    edited 30. Nov -1, 00:00
    Gosh Carly!

    You have had such a rough time! I hope you are reasonably well today?

    A lot of your story rang bells with me with regards to my own daughter who at 16 years and 3 weeks was diagnosed with leukaemia. I can totally see why 'they' initially thought you had it too because she also lost her appetite (anorexia), and was sooooo tired.

    My heart goes out to your Mum who will have been to hell and back with you.

    My daughter is now 18 and nearly finished her cancer treatment. Although she is left with Avascular Necrosis to deal with she should hopefully be well now.

    But your problems carry on.

    I wonder whether there is anything your consultant, who seems to understand you well, can do to put an 'alert' on your file to prevent misdiagnoses from A&E staff in future?

    Sending you, and your Mum, much love

    Toni xxx
    Love

    Toni xxx
  • PetiteNPetiteN Posts: 87
    edited 30. Nov -1, 00:00
    Hi Carly,

    I've had aggressive JIA since I was 3. I'm 33 now, I can relate to quite a lot in your post. Private message me anytime if you want to chat. I might not reply immediately at the mo as I'm having a severe flare, but I will get back to you :-)

    N
  • CarlyRenshawCarlyRenshaw Posts: 12
    edited 30. Nov -1, 00:00
    Hi frogmorton

    I am feeling okay today I've been out with my friends for the first time in a year so I am feeling really happy that I have managed that, although I'm not looking forward to waking up as I'm sure I will be in a lot of pain haha but it's worth it

    How awful I am so so sorry that you and your daughter have had to experience such a horrible thing I really am. How is your daughter today is she okay? I hate to imagine the pain and heart break you have all been through. I hope and prey that good health comes your daughters way and you are all able to live a happy life without these nasty things creeping up on use. Please do send your daughter my well wishes and tell her she's a strong girl she should be so proud of her self for getting through this and fighting so hard.

    My mum bless her she has been she still blames her self now for the way things ended up in the first place but I always tell her it's not her fault she wasn't to know she was told by medical professionals I was fine so all she tried to do wash push me and care for me, she has been absolutely amazing and so so strong she really is my rock. Mothers are a daughters best friend that one is for sure I would be lost with out my mum. You all deserve a massive award that is for sure for being so strong and so supportive and keeping things together through such horrible times.

    My consultant did say that he is going to do that but this time I'm also going to put a formal complaint I because I feel it has gone to far and if I keep just ignoring it then who knows how may more times I will be in the same situation

    Thankyou so much for your kind words and well wishes

    Sending you and your daughter much love & many many well wishes :)

    Carly xxx
  • CarlyRenshawCarlyRenshaw Posts: 12
    edited 30. Nov -1, 00:00
    Hi petite

    Thankyou for your comment on this post, I will private message you tomorrow once I am up and steady as I would love to hear your story and your journey although it's not going to have been a nice one it's always nice to hear other people's stories.

    I hope you get back on your feet fast and your feeling better in no time seeing my wishes to you and Thankyou for your comment
  • PetiteNPetiteN Posts: 87
    edited 30. Nov -1, 00:00
    Thankyou Carly, speak to you soon x
  • dreamdaisydreamdaisy Posts: 31,562 ✭✭✭
    edited 30. Nov -1, 00:00
    I apologise for not getting in contact before now but I've been somewhat poorly and not my usual self.

    I had a lousy childhood thanks to chronic asthma, this was years before the invention of inhalers and was combined with severe eczema. When I was around 10 I recall my mother having many a battle with various GPs because she had read about pioneering research going on at St Mary's Hospital in Paddington, London, about asthma and eczema and they refused to refer me. In the end my mother wrote to the hospital, explained what had been going on with me since birth and they sent her an appointment. It took around a year I think but it marked a change for the better in my life - and the GPs eventually apologised. :wink:

    Not enough is known about arthritis affecting younger people, it is not a disease purely for the elderly but people tend to think of it in that way. Auto-immune arthritis is a sly beast, there are many kinds and getting it under control can be a challenge. Mine is well-controlled with injected meth, injected humira and tablet sulph but it's all too little too late, the damage has been done so OA has joined in. :roll: I hope you soon find the meds that work well for you and that your notes are properly updated. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • CarlyRenshawCarlyRenshaw Posts: 12
    edited 30. Nov -1, 00:00
    Hi dream daisy,
    Don't worry about it I hope your feeling better in your self now & your back feeling your self, Thankyou for taking the time to comment I appriciate it.

    Oh dear it really does sound like you have been through a lot through out the years & you've been faced with multiple different problems I am sorry that you've had such a struggle whilst growing up. I can't imagine what it was like for you suffering so bad and knowing what is wrong with you but being refused the help that must have been awful for both you & your mum to see you struggling so bad and knowing that the medical professionals wasn't doing anything about it to help you. Your mum sounds like she has been absolutely amazing through out the years and has done her very best to make sure she got you sorted out & got you the help that you needed bless her. O am glad that they finally actually gave you the help etc that you needed and now your finally stable and you've finally been able to get things under control. I hope all is well with your asthma and eczema as I know how frustrating those two things can be as I suffer with them my self they are not as bad as yours not in the slightest intact they are rather mild and my asthma is easily controlled with just my blue & brown inhalers and only really gets extremely bad when my inflammation levels are high that is when I notice it playing up more, also the same with my eczema I only have that very mild and just use cream for it but at the moment it is playing up a bit and it is so fristrating at night time the covers feel like sand paper on my skin because of how sore it is. So I hate to imagine how you fee dealing with such a chronic form of it you must be really strong and positive minded to deal with it all.

    Do you have arthritis? I'm guessing that you do from the medication that you mentioned that you are on. What form of it do you have if you don't mind me asking ? If I ask you anything to personal please just ignore it and don't feel like you need to answer my apologies.
    Your right there is not enough known about athritis affecting young people and it is such a shame because people are ignorant towards it only for the simple fact they don't know about it they don't understand there should be a lot more people who know about it and understand it but u fortuntly there isn't we can only hope that one day in the future there will be. Yes my friends or people who ask about it always say to me "isn't that what old people have ?" And I will tell them they will be shocked but then forget about it after a minute or so purely because they don't understand there's many different forms and they don't only attack your joints they attack you from the inside as well & they also don't understand how painful it actually is to have your joints attacked they imagine it as a little ache or something when really it can be excruciating. But again we can't expect them to understand the severity and the different forms, the problems & severity in the slightest when they don't know about Artirits on the first place can we .
    Auto immune is horrible it really is and the worst part is it just creeps up on you out of no where without any warning you just wake up one day and bamb your life is changed forever. It makes me happy knowing that other people are getting there's under control and are able to have medication which actually helps them live as much of a normal life as they can, even though it's not happened for me yet it gives me hope.
    I am glad to hear that yours is well controlled and your not going through another fight of getting something else under control, I bet your drained with it all I cannot begin to imagine how you have coped over the years and stayed so strong. I have methotrexate tablets of that is what you mean by meth ? They don't work for me at the moment now though. I've been in contact with another young woman on here who is also on that humira and she seems to be doing really well on that also I had never heard of that before joining this forum. I am due to see my consultant in a few days for a follow up and to get me on some new medication to see if this will work fingers crossed it will but now I know about different medications that I didn't know about before joining this forum I will have a lot more to go of and mention to him to hopefully get something that will help me and get mine under control.
    Aww you poor woman you really have had it bad haven't you, you must be proud of your self for staying to strong through out this constant battle over the years because for sure I would be if I was you. Although at times you feel like giving up and fee like you have no fight left in you Any more and you question is this enough? Surely nothing else can happen now and then it does and it scares you, you have still managed to pull your self through out it all even the low times and your still her fighting now probably stronger than ever and not letting this win. I just hope you are able to live the rest of your time living in a much easier way, your health improves & your able to just relax with out having to battle something new every day.
    Thankyou for taking your time to message me I really do appriciate it.
    I hope your well, sending my love Carly
    I hope to hear from you soon x
  • dreamdaisydreamdaisy Posts: 31,562 ✭✭✭
    edited 30. Nov -1, 00:00
    Oh bless your heart! What a lovely post from you to me, I appreciate it. The eczema was from birth (1959 - pre-history for you when the world was black-and-white :wink: ) and the asthma began in 1965. Inhalers didn't turn up until the late 70's but in the 50s and 60s doctors genuinely did not know what caused these reactions in some but not others. It was the research at St Mary's that kick-started the inhaler and other treatments revolution, as a 'thank-you' when I was in my early 20s I took part in the human trials for Beconase. It wasn't pleasant but had to be done.

    I take injected meth, injected humira and tablet sulph, these are for my psoriatic arthritis and that is well-controlled at the moment, but the joint damage that caused has led to osteo arthritis and these meds don't affect that. I also have fibromyalgia. I am now 57 and reliant on walking aids if I have to cover any distance. We walked to the pub last night so I used the rollator. It took ten minutes to get there, all gently downhill, but nearer thirty to get back (all gently uphill!) I have a very patient husband who stands and chats while I take a breather. :lol: The main thing is I did it and, as always, there was a pleasant sense of achievement as a reward.

    My arthritis has limited my life in a way I thought would never happen to me but it has. It is what it is and it will do what it will do but that doesn't mean I have to kow-tow to its demands and take to my bed (but I do know when I should and that's when the PsA is flaring). I began aged 37 so I'm twenty years in but my Ma taught me well when I was a child, she would wheel me to school on her bicycle even though I was very poorly, she would distract me from the itchy skin and struggle to breathe with colouring books, jigsaws, her button box, my dolls and reading to me (we didn't have a telly back in the early 60s - imagine that!) so she prepared me well. I know she felt very guilty about my inheriting what I did (asthma and eczema from her, psoriasis from my Pa) but she wasn't to know, was she? By the time I was 16 I was able to know (thanks advances in medical knowledge) so decided against having children. To condemn some innocent to a life possibly governed by meds and hospital appointments (having lived such a life) was far too risky.

    Do I get fed up every now and again? Of course I do, I'm only human and my life is somewhat demanding on the pain-front. I do stop and count the positives in my life and they outweigh the negatives. My Pa blessed me with a good sense of humour and that makes a huge difference to how I deal with things. At least I know why I have what I have, but when it comes out of the blue, having lived a healthy life beforehand and there's no familial evidence it must be far harder to manage let alone accept. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
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