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