#systemic jia

[nicejewishgirl]

hope you're all right <3 wishing you good health, i've definitely been on the still's rollercoaster and i know what it's like when people don't know what's wrong.

omg I didn’t realize that I had even had asks!!! for that, I’m sorry to everyone including you but more importantly, I’m soooo sorry to read that you have still’s disease as well. ugghh still’s is such painful disease and it’s also so rare + misunderstood.

if you don’t mind me asking, how functional are you rn? even a episodic/mild case of this disease is ROUGH and would shock most people in/outside the medical community (sadly including specialists, particularly pediatric rheumatologists) so I’m definitely not thinking that functional is synonymous with completely being free of pain or even free of fever/rashes. just curious and hopeful for you.

I hate to sound corny but you’re in my thoughts and prayers now. get used to it. seriously sending healing vibes your way!

💓💗💓

[nicejewishgirl]

I didn't know you are on chemo. I hope things look up soon!

Thank you so much! I’ve been on and off chemo since 15 years old. I’ve been on drugs that are more advanced for my disease state but I have failed about 12 different biologic agents (and retried 9 of the drugs for a second and 5 of the meds for a third or fourth time out of my rheumatologist’ desperation). I’m on the newest biologic out on the market, kevzara, but my disease is only worsening so my rheumatologist has decided to go back to the basics and create a lower dose cocktail of three chemotherapeutic agents and cyclosporine. It’s been really tough, especially the last 6 months but I have no other choice.

[nicejewishgirl]

My back and my lungs hurt so much. Hoping it's not pleurisy round 2.

[majesticlolipop]

I have three flare ups and no spoons

(A flare up is when a longterm chronic or mental illness has a bout of attack, and you can't control it it just sort of happens )

Not sure about other people, but sometimes my worst critic is myself. So I’m on bed rest right now and I’m thinking “I’m so lazy. I should get up and go to school and everything will be fine”

But then I have to remind myself and say “Katherine, you’re in bed because you spent the night up in the bathroom, not being able to keep anything down because your colitis is all flared up, you can't move because your knees are all swollen and hot and puffy because you are banned from your arthritis medications and your arthritis is super active and if you walk on on active joints you will damage them.” then I’m like “Oh maybe its all in my head, the pain is all in my head” to which I have to remind myself that “The surgeon wouldn't have called you and said you need immediate action on your deformed hip joint if it was all ‘in your head’.”

Then I say things like “Oh if I just calmed my brain down a bit then I would be fine” and then I'm like “I have an anxiety and panic disorder, I'm allowed to be stressed out. I’m allowed have my triggers, I’m allowed to freak out about little things because I have a reason and its okay”

I just kind of wish i didn't have GAPD and systemic JIA and colitis like can't i just have one i can handle one but the three of them are active rn and I'm kind of like “Just going to put an out of order sign on my head and call it a day”

[majesticlolipop]

So for people who are wondering

I am FINALLY out of hospital. 

Which is the good news. 

The bad news is that my GI (tummy) doctor who dealt with my case says her clinic is ‘too busy’ to accommodate me. She was a very arrogant doctor and to be honest she didn’t take any of my concerns on board. 

They say I have colitis. Although on the diagnostic sheet she has a ‘?’. She said she doesn’t know, even though the surgeon who had done the scopes for her said I was very bad. 

My chemo (MTX) and my biologic (Symponi) have been taken off me for the last month, but the GI doctor told me the Symponi is probably what caused the colitis, but my rhuematolgist says it couldn't possibly be that. 

So basically I'm at home because since i don't need a tube in my tummy to eat I’m well enough to be home. But I'm sort of in this limbo because I'm not sure what I need. I’m not seeing my rhuematologist till the end of May which means no sort of pain relief. I’m not even allowed to take neurophen. 

I’m pretty annoyed at my rhuematologist. When I ended up in a and e a while ago because my lungs were under pressure with fluid he was /on the ward/ but never bothered to come and see me. And even though i saw him a few days ago, I only did because the GI said it was urgent. What he said to me? “You haven't got huge amount of swelling so..”  and left. He didn’t want to talk about changing my medications at all. My mum got pretty upset when I told her. Its all quite frustrating. 

But at least I am home now!

[theberkeleykat-blog]

More bad news at the Doctors :) :) :) I would be nervous if I ever received good news lolololol I like how I put all these lols and :) whilst frowning.

[theberkeleykat-blog]

22

Over the past six months, my health has severely declined leaving me emotionally and physically drained and unable to concentrate on anything. Birthdays are one of the most difficult days for me as it currently serves as a reminder of the years I feel that I have lost to this disease. Although my body feels ninety years old, I am glad I don't look it since the waiters all thought it was my 18th birthday. Yay?

[majesticlolipop]

JIA RANT

My mum's on this chat room for parents of Irish children and teenagers with JIA and because I've had it systemic onset JIA for fourteen years she's like the one with all the knowledge But she said she found it a bit scary because they were all bringing their children off their medications because of the severity of the medication (ie: one mother took her child off methotrexate because of nausea). The parents just starting out there JIA journey don't seem to understand that yes, the side effects of the drugs are absolutely awful, but you can't just take your child off them. Mum said she was terrified for the systemic children because parents are only realising that if you take all of the medication off a systemic suffering JIA child or young person they could /die/ and she had to be the one to explain it. I can't help but feel that people really don't get the severity of this disease. Like mum got so upset because she came in today and said 'I could loose you.' And I think it was the most heartbreaking thing.