Wonderin' if anybody felt the same...

[Guest guest]

I was diagnosed with jra when I was eight. I have it in every joint

in my body. Actually, the doctors say I have sarcoidosis, but they

treat it as a jra case. But I was wondering if any of the rest of you

feel overwhelemd at times... I mean, I have several other chronic

illnesses, but this disease hits me the hardest. Just knowing that

there are physical things that I will never quite be able to do

normally and thinking about the deterioration of my body depresses

me. I hate it. I'm 17 now, and I should be used to it, but the older

I get, the more cumbersome a load it becomes. I'll be going off to

college in a short time and I would just liek to hear from people my

age with the disease how you all manage to dwell on the good and not

the bad. I would really appreciate some feedback. Thanks.

Ta

[Guest guest]

hey Ta, im hemal

I was diagnosed with so-jra when i was 4. and im 21 now and going to university. Every joint is affected for me as well. I know college is a big step, especially if you are going to live on campus. But there are programs and other services that can help you make your stay and learning more easier. As for feeling depressed, or feeling like giving up...DON'T. There is much worst things out there. Thats how you have to look at it when it gets you down. It will come and go, hopefully you have a set of friends that can understand what you are going through. I wish nobody would have to feel like this, but thats life i guess, if it wasn't you it would be your brother or sister. If you ever want to talk just email me. Remember that your not alone, you just can't see it.

hemal patel (hemal99patel@...)

nikkita_c2006 <nikkita_c2006@...> wrote:

I was diagnosed with jra when I was eight. I have it in every joint in my body. Actually, the doctors say I have sarcoidosis, but they treat it as a jra case. But I was wondering if any of the rest of you feel overwhelemd at times... I mean, I have several other chronic illnesses, but this disease hits me the hardest. Just knowing that there are physical things that I will never quite be able to do normally and thinking about the deterioration of my body depresses me. I hate it. I'm 17 now, and I should be used to it, but the older I get, the more cumbersome a load it becomes. I'll be going off to college in a short time and I would just liek to hear from people my age with the disease how you all manage to dwell on the good and not the bad. I would really appreciate some

feedback. Thanks.Ta

[Guest guest]

Ta,

Glad to see that you are actively looking for help. I have been an advocate for this type of self-help groups for ages.

I am a 31 year old who has had JRA since I was 4, in every joint as well. It has been a struggle, and a challenge, but it's not something you can't overcome. And it appears you have a grasp of that already, and you should be commended for that.

I went to college in both the cold Northeast, and then again in the wonderful warm southwest, where I live now, Phoenix. Now I work in a medium sized architectural office, a career which I have been in love with for ages now.

My suggestion to you is just the advice I give to anyone, with or without a chronic disease... Do what makes you happy, cope the best you can, and lean on your friends. We have an opportunity to network with others who have been through the same problems, over and over again. We can lean on them for advice, we a re a unique bunch, and probably the best people I've ever met. Lean on this support network, ask questions, be candid, and honest, we are ALL here for you.

Feel free to contact me outside of this forum too. E-mail below, or call if you want, anytime, 480 577-1271.

Fischer DPA Architects, Inc. pfischer@...

From: [mailto: ] On Behalf Of hemal patelSent: Friday, November 18, 2005 10:37 AM Subject: Re: Wonderin' if anybody felt the same...

hey Ta, im hemal

I was diagnosed with so-jra when i was 4. and im 21 now and going to university. Every joint is affected for me as well. I know college is a big step, especially if you are going to live on campus. But there are programs and other services that can help you make your stay and learning more easier. As for feeling depressed, or feeling like giving up...DON'T. There is much worst things out there. Thats how you have to look at it when it gets you down. It will come and go, hopefully you have a set of friends that can understand what you are going through. I wish nobody would have to feel like this, but thats life i guess, if it wasn't you it would be your brother or sister. If you ever want to talk just email me. Remember that your not alone, you just can't see it.

hemal patel (hemal99patel@...)

nikkita_c2006 <nikkita_c2006@...> wrote:

I was diagnosed with jra when I was eight. I have it in every joint in my body. Actually, the doctors say I have sarcoidosis, but they treat it as a jra case. But I was wondering if any of the rest of you feel overwhelemd at times... I mean, I have several other chronic illnesses, but this disease hits me the hardest. Just knowing that there are physical things that I will never quite be able to do normally and thinking about the deterioration of my body depresses me. I hate it. I'm 17 now, and I should be used to it, but the older I get, the more cumbersome a load it becomes. I'll be going off to college in a short time and I would just liek to hear from people my age with the disease how you all manage to dwell on the good and not the bad. I would really appreciate some feedback. Thanks.Ta______________________________________________________________________This email has been scanned by the MessageLabs Email Security System.For more information please visit http://www.messagelabs.com/email ______________________________________________________________________

[Guest guest]

--Ta,

I hope and some other jra veterans will see your post and be

able to respond and encourage you.

I don't know what its like to deal with a chronic disease, I only

know how it feels to parent someone with the disease.

I know it must be so hard for you to think about going off

to " college life " and wanting to keep up with other kids your age.

Its certainly not fair that you should be burdened at this young age

with a disease that feels limiting...

My daughter once told me that she wished she never had jra. I

remember a day when she was crying and she couldn't walk due to the

pain and she said that she hated her body. She is healthier now and

she told me the other day that she can see some of the benefits of

having jra...I asked her what they were and she said that she felt

like she understood other people better that suffer from sickness

and that she could be used to help cheer them up. She said that she

felt it made her turn to God more for help and because of that she

has a better relationship with Him. She said that when she has

healthy days that she is happier than other people because she knows

what its like to have un-healthy days.

I was surprised by the insight that she had for a 10 year old, but

then I am reminded over an over on this list of the maturity,

compassion, intelligence, and motivation that are kids and adult jra

list members have...

I know that you will triumph over this disease. And maybe you will

have to take things slower than some of your peers but I pray that

it will only make your journey that much sweeter!

I am praying that today will be a " happy healthy " day for you!

Blessings,

(aundrea 10 systemic jra)

- In , " nikkita_c2006 " <nikkita_c2006@y...>

wrote:

>

> I was diagnosed with jra when I was eight. I have it in every

joint

> in my body. Actually, the doctors say I have sarcoidosis, but

they

> treat it as a jra case. But I was wondering if any of the rest of

you

> feel overwhelemd at times... I mean, I have several other chronic

> illnesses, but this disease hits me the hardest. Just knowing

that

> there are physical things that I will never quite be able to do

> normally and thinking about the deterioration of my body depresses

> me. I hate it. I'm 17 now, and I should be used to it, but the

older

> I get, the more cumbersome a load it becomes. I'll be going off

to

> college in a short time and I would just liek to hear from people

my

> age with the disease how you all manage to dwell on the good and

not

> the bad. I would really appreciate some feedback. Thanks.

>

> Ta

>

[Guest guest]

Hey Ta,

I'm not gonna say I know exactly where you are coming from because although we are fighting the same battle, it affects us all differently. But I do know that I have felt overwhelmed, annoyed, and frustrated by this disease several times through out my life. I'm 20 years old (about to be 21 in a month) and was diagnosed with Poly JRA at 7. I went through periods of no flares and then little flares when I was litle and I actually only used naprosyn for the longest time and was treated under a pedatrician. It was until I was about 13 when it started getting bad. I started to see a pediatric rheumatologist at that point and eventually my whole diagnosis got changed to Ankylosing Spondylitis.

As for college I'm gonna say you gotta take the same approach you take with everyday, enjoy your good days, and push through your bad ones. It might be hard at first because its going to be the first time when you don't know everyone in the school, the teachers aren't as nice, and your in a whole new envrioment, but like anything in your life you will adapt to it. In fact JRA has totally prepared you for this, you know how to live with pain (and trust me lecture classes can be painful to listen to), weird situations are normal to you (college is strange but life with JRA can be just as if not more weird), and you know how to talk to adults (you probably spent your life talking to doctors and nurses). Find the disability office and sign up they are more then helpful in the transition, I got closer parking and I knew that if I needed them they would have my back. Also tell your teachers trust me there are totally nice teachers who understand. My psyc proffessor totally saved my butt this semester, I had to drop my statistics class because I missed a whole bunch of classes from a flare and although the teacher allowed me to make up my work I still had to take the test at the time it was scheduled and consiquently I failed, well once I dropped that class I was down to 10 units which meant no insurance and because my psyc teacher is super awesome he signed me up for a special projects class for two units without making me do any extra work, there are teachers out there who are nice.

If your starting to feel like depression is overwhelming I would suggest talking to a therapist, I did therapy for about a year to help me cope with the disease, just because you see a thearpist doesn't make you crazy. And sometimes it can really help. There is no way around some sadness regarding this disease, but truthfully its a sucky situation. Your 17 but you move like your 80, your dealing with things that most people dont understand because they wont be dealing with it for decades, and that sucks. I am not sure what your other chronic illnesses are, but I am sure they suck too. The most important thing to do when the load is to big is find a friend who can talk it out with you, because sometimes just being able to say everything you feel about this disease (and the others too), all your fears, and insecurities, and everything you have ever thought regarding this situation can be unbelievably helpful. You have made it this far fighting this disease and that is just proof of how strong you are. It's not easy but you are proof that you can survive this disease. If you ever need someone to talk to I am here always.. not exactly your age but close..

Lots of Love

(JAS, 20)

www.caringbridge.org/ca/lisaspage