[Grey Matter]

I tested negative for Lupus, which is both a blessing and a curse.

I went to my RT today and she finally gave me the diagnosis of adults still's disease. Which of course, is rare in adults (it starts usually as JRA). I am going to start on steroids next week and in two weeks go back for a check in.

I am really sad. I can't explain it correctly. My parents have been no help. Telling me they have to live with their illnesses for the rest of their lives to which I replied to, quite bluntly with, "Yes but no offense, you're in your 50's. I am 23.".

No one understand why I am taking this so hard and why it's hurting me. I already feel so broken mentally and now my body is breaking with it. No one is letting me feel validated in my emotions, telling me to suck it up and move on, which I will. Right now I just need to grasp that my body isn't the same anymore. And that's god damn hard.

[-jimi-]

It IS hard. It's not what you planned. And I'm sorry your family doesn't offer support. I was more eased into my diagnosis of lupus (it and Still's seem quite similar symptom wise), because I couldn't stand my evil doctors so I fired them so it took years and years until I finally got some sort of answer. I was 26 when I fell ill and in a way I'm glad I didn't know what was coming.

My family doesn't get it either. They have made up a much more mild diagnosis that they say I have, they refuse to say I have lupus because they don't believe it. Parents can be really weird.

I mean. My dad had lot of weird illness and deaths around him. But I was never allowed to be ill because that wasn't my part in the play. It seems like we are given parts to play and when we don't play them, someone will get mad....

[Grey Matter]

Oh my god, you explained it perfectly to a T. It is not my part in the play. I am meant to be the strong one, the optimist, the rock for everyone else. It's like they can't accept that they will need to take a new role themselves so it comes down to me not really being "that bad off" just "eh that kind of sucks".

I am so sorry you have to deal with it to. The illnesses themselves are hard enough as is. When your support system is dwindling, it's even harder.

[healingme4me]

I am very sorry to read you have this illness. It's a chronic illness, it's debilitating, it's lifelong, there is no cure and you are young!

That's the thing about some of these chronic illnesses, mine is MS. Some days are good healthwise, some are not. And those, that don't have these lifelong illnesses, sometimes, lack compassion to the reality of living it!

Many of the symptoms are 'hidden', 'invisible', but they are very real.

I am sorry, that your family is being dismissive of your reality. It's not fair. It stinks, when others, say things like, well at least you don't have what I have, or you've no right to complain, because you don't have what I have. It's not an effin competition!

Are you learning how to manage it? Have you reached out to others, with the same condition?

[Grey Matter]

I think the fact that it is invisible is why they are struggling with it, even though my mom has RA! Which doesn't make sense to me! It is real, it is awful. This pain is relentless and I can't escape it. Not to mention the fevers. I can't stand getting them anymore. I am just so tired of this and I wish I could be cured.

I looked for people in my city and there are no support groups or anything for Adult Onset Still's disease, just for kids and teens. I will ask when I see my doctor in two weeks if she can point me in the right direction. I can do most things alone. This I can't do alone.

[Wren_]

I'm glad you know what is going on at last but what a difficult thing to hear, and even more, to live with ...

I haven't even heard of stills disease before so was just reading about it before replying ... maybe this group can point you to someone or a group in your area that can give you some much needed support? International Still's Disease Foundation, Inc.

I'm sorry your parents aren't being more supportive ... especially when they know themselves the pain of illness

like healing mentioned ... it stinks ... all of it does

[Grey Matter]

Oh wow, there is a foundation! Thank you SO MUCH for that link. I was looking and continued finding nothing. Thank you!

I just hope the steroid treatment helps... I need to get my flu shot now because my immune system is just going to be more shot. I am just tired and I want to give into this disease but I am young and I know I can't. Ugh.

[Wren_]

I hope the link helps; and that the steroid treatment will as well

if you put this in google there seems to be other links that could help as well:

adult onset stills disease support groups

would be good for you to find some support from those who know best about this, as well as from others

[healingme4me]

Originally Posted by Teen Idle

Oh wow, there is a foundation! Thank you SO MUCH for that link. I was looking and continued finding nothing. Thank you!

I just hope the steroid treatment helps... I need to get my flu shot now because my immune system is just going to be more shot. I am just tired and I want to give into this disease but I am young and I know I can't. Ugh.

There are meds out there, to help battle fatigue. I forget which ones, I have not yet needed to use any, but know through MS support groups, that they exist. Perhaps, talk to your doctor.

Steroid treatments can be helpful.

I, too, have to get flu shots. Autoimmune illnesses, force our hand.

[-jimi-]

I started getting the flu shot because I get deadly ill with flu, it has still happened since that I got the flu but much milder, mostly I don't get it. People think I put toxic stuff in my body so I don't tell that I take the shot.

PEOPLE ARE SO STUPID.

But AI and similar you can really be prone to infection so yea... flu shot can save your butt.

I hope the Still association can help you out with details we can't. Fellow sufferers sometimes are the best helpers.

[(JD)]

I was young too, when my disability began.

It might take some time for the doctors to get through to your parents. Maybe they are afraid that if they admit it, they'll give in to you and baby you (their issues, not yours)? IDK about caring...who ever gets "too much" caring though!

You can let this ruin the rest of your life, taking away all it's joy, or you can accept it and live life to it's fullest as you are. I hope that doesn't sound uncaring. I mean, you can't remove it, you didn't choose it...so if you spend time being angry, it's only your time that you're wasting. Yes, lots of people have disabilities and still carry on with life. I do hope that the steroids help. LOL I had so many steroids as a child (before they knew about them well) that I began singing tenor in 4th grade! (I'm a girl btw. )...

Learn what you can about this, and keep track of what makes you feel worse, what is worth the effort (because generally there are prices to pay when we try and do something fun.) Your life isn't over, but it is changed...for now. You have no idea what cures and outcomes, changes in your body etc there might be! And if you waste time worrying or wallowing and it turns out okay, you really would have wasted that time!

Oh, and doctors can be wrong too and it might be a more temporary thing than lifelong.

[Grey Matter]

I decided I am going to allow my self to be angry, at least for a few days. I think after 39-45 vials of blood being taken, endless panic attacks, loss of friends over my illness, and just pure frustration that I deserve some time to be annoyed and hate my body. And then move on.

As for it being temporary; it's not. My doctor has been going over charts from when I was 13. The first clue in should have been me having strep throat twice a month which resulted in my tonsils being removed. My joint pain has been here since I was 14 and has only gotten worse. All I can do is take care of myself, take my steroids, and keep on keeping on really.

[-jimi-]

You have the right to go through stages. If you are pushed not to, more likely you will not cope as well.

In time you probably will be very vigilant to what sets off things and what is good and safe to do. It does take a while getting there, but learning what makes illness worse is golden. And only you can do that, it is your body.

I will not try to fool you, you probably have to sort of snake around the pitfalls and not be able to be youthfully reckless. But if you do, you might be able to live a pretty full life.

I know I can stand make quite huge efforts (all cannot) but then I have to rest for a long while. So it takes planning. For me, chronic stress is the worst for me. I recently stressed myself into a pretty bad pain episode. It was something from outside so I could not fit it into my schedule.

What your family MUST come to terms with is that even though you will probably be able to hold down a job, it cannot be any job and you can definitely not work a high pace job 11 hours a day. It is just out of the question. You and I have illnesses that might go for inner organs if we do not get the rest we need and put in too much effort. Personally I sleep 9-10 hours a day because sleep is when we heal. Us who have inflammation need to heal a lot. People might call us lazy but they don't know better.

Also your symptoms might get a lot better with steroids, they are pretty good at taking away inflammation. I opted out of that treatment since I don't yet render my symptoms severe enough, your case seems different. Just keep an eye on what the pred does, sometimes they can lower it after a while or lower it and add yet another med. I will not lie, it can be a harsh med depending. If you have a psychiatrist, they should be informed you take a steroid.

Every feeling you have is fine. You need through them and let your brain process them. That is how we eventually find some kind of balance. Not by thinking happy thoughts. At least it is my take on things. There is a time for anger, a time for fighting, a time for crying, a time for healing...

[Grey Matter]

Thank you so much. I cannot tell you how badly I needed to hear all of that. I finally feel validated in my feelings and not like I am being over emotional or seeking attention, which a lot of people at home (family, friend) are making me feel like I am out to accomplish.

I think a reason a lot of my friends backed away from me is because of the fact that I can't be a typical 23 year old (my friends were 21-22). I can't go on random drinking binges, I can't stay up all night walking around and being reckless. That is how they see beauty in life, and that's fine. To each their own, I guess. It's just not a life I can live. I need to find some kind of beauty in stillness for a while so I can adjust to my body and then move from there. I don't care if I go slow, as long as I get a chance to go at all.

I am terrified about the job. I start on the 23 and it's a 5-11pm shift. My fevers typically spike around 5pm and break at 8 or 9. And they can range from 99.1f to 103.4. My highest last month was 104f, and the idea of working when I feel like that is making me sick to my stomach. I am applying for disability and not informing my family. I do not need to, I am an adult, but chances are my parents will want to control it and get annoyed that I applied even though I know it takes some Still's patients a year to get symptoms under control.

I am just sad. That is really it. I am sad that I am 23 and I already lost so much and now I am losing more and more. I don't want to wear this medical ID bracelet that screams "SOMETHING IS WRONG WITH ME" every where. I don't want to stay in bed all the time. But its what my body needs and I need to learn to listen.

It's just a new and frightening place.

[growlycat]

Just wanted to show my support. Chronic diseases are so hard to explain to others--some don't believe you, some may even think it is your fault somehow. Try to seek people who aren't ignorant and judgmental. Wonder if there is a meetup group or support group of other young adults with similar symptoms? That way you could be social with those that need to physically pace themselves. Take care!

[DanyTar]

Hi Grey Matter...

I just wanted to reach out to you since you seem to be in a similar boat as I am. I'm 25 and was finally diagnosed with Adult-Onset Still's Disease last week. I've been sick what seems like forever and seen multiple doctors that either told me I wasn't "sick" enough or was too young to be sick even though my life fell apart around me.

I just wanted you to know you aren't alone! Most people don't get it. Most people don't know what it's like to wake up day after day feeling sick with no quick fix to get better and no explanation to boot.

I started on NSAIDs and so far I feel like I've been getting worse though it's too soon to tell. I'm new to this page/forum so I hope you've had better luck in the last few months.

[WikidPissah]

Grey Matter - I am so sorry that you are being subjected to this disease. My daughter has behcet's disease, she was dx'd at 14. Auto-immune inflammatory are awful to deal with, and you have every right to be angry and grieve...

I do want to encourage you though. Now that they've made a dx, they can start treating it more aggressively. Don't stop with one rheumy...make sure you get treatment. I also want to tell you that diet can make a world of difference. My daughter eats a very clean, mostly vegetarian diet. There are anti-inflammatory diets all over the web, but our fav is Clean Cuisine - A Complete Anti-Inflammatory Diet and Exercise Program It makes a huge difference in energy and pain level.

I was on mega doses of prednisone for over a year from auto-immune/inflammatory disease brought on by aggressive chemo/radiation. I am in remission from cancer, but still battling the auto-immune stuff. I follow a strict vegan diet, and a book by Joel Fuhrman called Eat To Live has helped me so much. I have lowered my pred, which started at 1000 mg a day (no I did not add an extra zero), down to 5. Doing well.

Much luck to you, please pm me if I can be of help.

[Hydrophobic1212]

I am so sorry to hear this. ): It is very difficult to handle this, and I can't exactly speak from experience just yet (though, if my diagnosis turns out to be true, then I will fully understand this soon). Just the thought, however, of thinking that this might happen, I am already thinking like this and can somewhat relate. It is very scary to think that you might never feel 'normal' again. I really wish you the best and I am sure you are very strong. (: You never asked for this, but all we can do is make the best of what we have.

[ZenHummerXOXOhsp]

Originally Posted by Grey Matter

I tested negative for Lupus, which is both a blessing and a curse.

I went to my RT today and she finally gave me the diagnosis of adults still's disease. Which of course, is rare in adults (it starts usually as JRA). I am going to start on steroids next week and in two weeks go back for a check in.

I am really sad. I can't explain it correctly. My parents have been no help. Telling me they have to live with their illnesses for the rest of their lives to which I replied to, quite bluntly with, "Yes but no offense, you're in your 50's. I am 23.".

No one understand why I am taking this so hard and why it's hurting me. I already feel so broken mentally and now my body is breaking with it. No one is letting me feel validated in my emotions, telling me to suck it up and move on, which I will. Right now I just need to grasp that my body isn't the same anymore. And that's god damn hard.

I'm sorry to hear that. I can relate, I've been living with Lumbago for 2 yrs now ever since I was 24. Physical pain and psychological havoc; it's a double whammy. It is extremely difficult to accept disability and unwanted change; I am still having trouble accepting my physical disability. It's difficult sometimes to even want to get out of bed in the morning. I know how it is.

You're doing the right thing though by seeing your RT. You have done the first step; however, accepting the change will take time. Have you made a list of your strengths and weaknesses? I have been advised to do this. It's helpful b/c you can focus on your strengths and embrace them; and work on transforming your weaknesses or just accepting them and finding a way to embrace them.

]Remember to take sometime in the day to do something you enjoy. Persistence is priority. Focus on the best possible outcome. We have every right to cry.

[Christina86]

Originally Posted by Grey Matter

I am really sad. I can't explain it correctly. My parents have been no help. Telling me they have to live with their illnesses for the rest of their lives to which I replied to, quite bluntly with, "Yes but no offense, you're in your 50's. I am 23.".

No one understand why I am taking this so hard and why it's hurting me. I already feel so broken mentally and now my body is breaking with it. No one is letting me feel validated in my emotions, telling me to suck it up and move on, which I will. Right now I just need to grasp that my body isn't the same anymore. And that's god damn hard.

I can't say I understand. I've had my disability my entire life. All 27 years worth of it. BUT. My disability itself continues to evolve, and things continue to change... and not for the better. It IS hard.

So incredibly hard.

Your body isn't the same anymore. You've lost something. It is grief. So be angry. Be sad. Be whatever you need to be. Get support. I'm glad there are support groups for you.

You are still the same person, at the heart of it. Even when you're now more 'broken' than you were before - you are still you. Just a slightly more different you.

I'm sorry that you're hurting. I AM glad that you've got a diagnosis. Having a diagnosis is hard, but it is also helpful to validate how you've been feeling.

You don't have to be the strong one. Our roles can change. Your family may hate it, and rebel against it - but you need to do whatever feels right for you. Because, ultimately, you are the important one in your life.

[grandma21964]

Wow, I just wanted to say I am glad you told your story. Illnesses are the pits, but support is what ya need like healingme4me said. You are brave and strong.
People can be insensitive of what they don't understand.

Recently what I did, I ended up in a hospital for stuff and found brochures about my illness. I unfortunately have a few major illnesses that are unseen. My PTSD or post traumatic stress disorder is complex so I got the brochures and handed them out to my mother in law and some others. I want them informed. They cannot show me any sort of care if they don't get it. At least I' am hoping for a some what positive outcome.
Still, people can be hurtful and senseless, but you have us to help keep ya going.
I joined a Lupus support group on Facebook even though I have not been diagnosed, but they give support for RA, OA, Fibromyalgia, etc. They post some encourage quotes that make me stop and think about me situation.
Whats interesting to is that the faces we put on at times need to just make us happy. I have to try and remember that, though not easy.
Big Kuddos to you for looking for support.
Can you explain to me about your adult Stills disease, never heard of it either.
Grandma