Juvenile Psoriatic Arthritis

Juvenile Psoriatic Arthritis. Rant about what no one else understands.

Rant away Stella, thatā€™s what we are here for :blush:

Hi. I was 8 when I was first diagnosed and have had it for 3 years or so now. Iā€™m really tired of nobody understanding me. Iā€™m tired of everybody saying they understand me one moment but the next out played outside like they totally forgot about me cause Iā€™m just in bed watching Netflix and designing clothes.

Whatā€™s interesting is that your complaint about no one understanding is not just for your age group. Itā€™s the same for people up into middle age, and then some people start to catch up with other ailments in terms of needing down time, etc.

When I was teaching I had a student with juvenile rheumatoid arthritis. He lived super close to school and usually walked home, but occasionally I would see that he wasnā€™t looking well. I would sometimes drive him home even though it was a short walk. How do you do handling things when youā€™re in school?

Hi Stella I know more about this than I care tooā€¦ I have two Granddaughters (who live with me) that have been "officially diagnosed one at 8 and one at 14 as well as an older daughter a former Pro Tennis player who its been broadly hinted atā€¦ (she is a stubborn one)

In an other part of my life I am national Ambassador for the the Arthritis Foundation and have traveled the country and testified at several Congressional hearings, My focus is increasing access for you guys with Pediatric Rheumies. At present I am building a new Bens Friends Community for JA kids. A couple of times a year I have the privlege of working in the medical hut at different kids arthritis camps around the country.

So even though its summer Vacation I am going to assign some homework (Donā€™t mind me I was a College Teacher and Talk to much:

  • Go toKids Get ArthritisToo and sign up. They will send you and your parents lots of good stuff

  • Then Go HERE and order a power pack (its free) Its a pretty cool back pack loaded with goodies brochures some book and favorite is the Teddy Bear which is actually a cold pack/hot back Even though my girls are 18 the still never leave home without theirs. There are 50+ kids with juvenile arthritis whoreceived a JA Power Pack in Mississippi. Your foundation is very active and I know ready to help. Iā€™ll bet they can help you find an arthritis buddyā€¦

  • Then Go HERE and order the free brochures. You will want to keep several copies of the one for teachers handy. My girls also keep a few copies of Kids Get Arthritis Too! handy for friends relatives etc even though its mostly for families. The Book is in your Power Pak so you donā€™t need to order it. The Brochures explain everything very well. Its not YOUR job to make others understan but I always approach it from the standpoint until they Know better (the brochures) we can be a little forgiving of their ignorance. Siblings are the worst you have 3?

  • Contact your Local Arthritis Foundation and get hooked up. AND please go to one of the camps. If its a long trip we have scholarships to help with transportation. Most are a family Camp, but the one I work at most Montana Is not.

  • There is a ton of stuff for parents especially dealing with the Schools You will want to get them involved as they can talk to other parents and learn a lot.

Thatā€™s really not lot and who doesnā€™t like free stuff??

You are clearly brighter than most 11 year olds, Havenā€™t met a JA kid who isnā€™t. BUT I want to have you here as you can learn alot. As I am sorta the boss I gotta tell you we have a rule that you have to be 13. BUT Iā€™m the boss have your folks email me so they know you are on line. and you are good to go. You will also be meeting Seenie who is an amazing person who not only has PsA but has taught School all over the world. This is the internet and want to assure your folks your safe here. Iā€™ll make a few changes in your settings (for now) in regards to messaging. I want to know which members are messaging you. We have a private group for our younger members that isnā€™t real active now as the main ones are off to college.

We got a deal? Iā€™d love to exchange emails with your folks in case they have any questions or Iā€™ll give them my phone numberā€¦

Todays Lesson. Even though you have Psoriatic Arthritis, many Rheumies will call it Juvenile Idiopathic Arthritis or JIA. Thats because kids get it worse and it effects more parts of their body (thats where the word ā€œIdiopathicā€ comes from) Now its just JA. It also changes as you mature physically USUALLY for the better, and sometimes it even goes away for a while (It hasnā€™t happened for my Granddaughters but it did for my Daughter) The GOOD thing is that you kids are tougher than us older ones (I was 17 when I had my first Flair and I still remember it even though no one knew what it was.)

TJ

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Well this past year I missed at least half the school year cause of flairs
and doc appointments. It was pretty hard too cause I didnā€™t do p.e. once
last year. Also my teacher was not that sympathetic so she really made me
mad and didnā€™t understand me and that was obvious. Also my class was up 2
and a half flight of stairs so altogether I walked up and down them 7 or 8
times daily which was really hard especially when I was on crutches.

Stella!

Youā€™re a star :dizzy: for getting yourself on here to rant. Weā€™ve all done that from time to time. But we do a few other things as well. :wink:

Tntlamb said heā€™s sorta the boss. So not true! He IS the boss! I used to be a teacher, but now Iā€™m retired and I really enjoy helping around here and on the other Benā€™s Friends sites. And Iā€™m not the boss. LOL.

One of the things I do at Benā€™s Friends is I keep an eye on our younger members. Right now, you are our youngest. I guess that makes you a bit of a celebrity.

Please donā€™t forget to ask one of your parents to email tnt, and he will explain to them our special online safety precautions for young members. You can message either tnt or me (or our other Moderator Support person, Meli, who is REALLY cool) through the address near the top of the home page, "ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ā– ".

Take care, Stella. I hope that meeting some new friends here today has made you feel a bit better.

Seenie

PS youā€™d better do your homework, cuz tnt checks stuff like that. :roll_eyes:

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Thanks and yea its helped a lot already. Also, Iā€™m having some trouble finding the place where it says Kids Get Arthritis Too because tnt said Iā€™m supposed to sign up for it so my parents and I can get some cool stuff but I canā€™t seem to find it. Can you please tell me where I can find it so I can complete some of my homework he gave me. :wink:

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Hey thx for the message. I can give you my momā€™s email and tell her to email you if you want. Hereā€™s her email below: [email removed by Seenie for online safety] Thanks for still letting me text people. I havenā€™t been able to find anyone else really to talk to so really thanks.

Hi there!
I tried to figure out where to sign up, and it is not easy! But I think Iā€™ve got it:

  1. Start here.
  2. Begin by ordering the Juvenile Arthritis brochure. Click on where it says ā€œClick here for fast delivery by email.ā€
  3. That takes you to the Arthritis Foundation store. At the very top, you will see a grey bar, and in the grey bar you will see ā€œRegisterā€. That is how you sign up to get the free stuff.
  4. I suggest that your parents do the registration. After that, it works just like any other online store, except that a lot of the stuff you can order is free.

The bad news seems to be that a lot of the kidsā€™ materials seem to be out of stock. So youā€™ll just have to go looking for what is available.

Good luck with this. Let us know how it goes!

Seenie

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Just checking. . . do you have a 504 plan? If your building has multiple levels then you need to be allowed to use the elevator. This should be built into your plan. If itā€™s not, talk to your folks about this. You may also qualify for adaptive PE so that you can participate at a level that is good for you.

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Hey well the middle school I go to is really old ( my dad went their too.)
So they donā€™t have an elevator which I think is stupid. And I donā€™t know
about the 504 plan. Also, I truly donā€™t like p.e. so I kinda like sitting
out.
Goodmorning!

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Good morning Stella, so glad youā€™ve got things all organised a bit now with lots to do and discover from all the information tntlamb and sceenie gave you. And I agree with them, you are a ā€˜starā€™ for managing to find us. Hope you have a much nicer day today too and Iā€™ve no doubt youā€™ll soon find other kids who will know exactly what youā€™re saying and feeling.

When I was little, really till I was around 10 years old, I missed lots of school too as I had asthma which kept me in bed a lot. Like you I found it pretty boring and lonely but one thing I used to do was draw pictures. I wasnā€™t very good at drawing really but I really enjoyed doing it and it really helped to have projects to do. Sounds like you do something similar with designing clothes. Itā€™s good to have things like that to do isnā€™t it? Anyway I hope youā€™re having a good day. :smiley:

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No problem @Stella82415 on the stairs: There are stair climbing wheel chairs like this one: https://stairchairpro.com/motorized-stair-climbing-chair
Your school has one somewhere the ADA requires it. A 504 plan makes sure you can use it as well as sit out of PE WHEN YOU NEED TO (you really should try when you can, its hard but so worth it long term) I sent your mom a guide on how to get a 504 plan for you (hope it was okay)

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Hey thanks and ok. Iā€™ll ask my principal about it. :slight_smile:

Thats one way to do it. I would suggest however you have your MOM cal the principal and ask for 504 plan meeting. In the meantime make a lsit of all the problems you have at school to discuss. Some common ones are:

  • tardies - you just canā€™t get moving some mornings
  • Make-up work - for some classes they should be able to give you packets to do the work or forgive that which isnā€™t necessary
  • homework if you make through the day thats enough
  • Dress code does it effect you especially during a psoriasis flare?
  • tutors - you may need help to keep caught up in things like math
  • Time for changing classes - some need more time
  • Stairs
  • Absences- They arenā€™t your fault
  • PE is clearly an issue
  • Privacy- you do NOT need to explain
  • Rest periods - most kiddos need to be able to veg sometime during the day emotions physical tiredness ect just get the best of you. They need to provide you a place to recharge
  • Length of school day. For some a full day is too much
  • Meds you need access to your PRN meds again without having to explain
  • Furniture - you may need cushions or be close to the door
  • appointments, you go when you need to NOT short school days

Often your Doc or PA will help by either attending the meeing or sending a letter. You should also involve your therapists, outside counselors etcā€¦

Oh, you should be able to participate in gymnastics as you are ableā€¦

This doesnā€™t mean you get out of anything, just that they have to make accommodations so you can do it.

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Stella,

Nobody likes asking for special consideration like a place to rest comfortably, but thereā€™s only one person who is going to suffer if you donā€™t. Asking for special consideration is going to help you learn more and learn better, which is why you really need to do it.

Iā€™m thinking of Phys Ed. Iā€™m a grumpy old teacher-creature, and I think you need some of the movement that PE would give you. Sorry sweet pea, sitting it out just isnā€™t good enough. Iā€™m surprised that TJ didnā€™t use one of his corny old phrases on you, ā€œMotion is Lotionā€. (Ya, I know ā€¦ groooaaaan!) Hereā€™s the thing, though. He is absolutely right on that: gentle exercise of the right kind will help take away some of your pain, and also protect your joints from damage. Youā€™re probably thinking, ā€œWhatā€™s the right kind of exercise?ā€ Well, thatā€™s a question for your physiotherapist or your rheumatologist. Often, swimming is suggested as being one of the best ways for people with arthritis to exercise. Thatā€™s what I do, and I love it. But hard to see how you could swim instead of sitting out PE.

Maybe think about a personalized exercise program that you could do while the rest of the class is doing PE. Iā€™m sure your physical therapist would be able to work something out with your teacher. And if itā€™s something that needs a quiet space, thereā€™s always a way of arranging that in a school.

It sounds to me like you are a pretty creative person, and that you like to design solutions. Put your creative brain cells to work on that one!

Howā€™s your day so far? Or are you sorry that you met us? :stuck_out_tongue_winking_eye:

Seenie

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Hey so far Iā€™ve had to really hard and painful therapies. One of them is
swimming. Also, one of the reasons I sit out is because Iā€™m always in a
flair up. Another reason I sit out of p.e is because I have therapy almost
everyday I have p.e. so Iā€™ve already done a really painful workout.

it shouldnā€™t be painfulā€¦ but one of the things that is hard for all of us is learning the difference between 'good" pain and ā€œbadā€ pain. The way I tell is if I feel better the next day. Iā€™d suggest you keep track of " morning stiffness. If its better OR less than 20 minutes, you are doing the right things. If you are doing PT and swimming daily maybe your counselor can have that ā€œcountā€ They shouldnā€™t be making you stand out from the rest of your class by ā€œsitting outā€ thats what we call ā€œlabelingā€ and its not acceptable under HIPPA laws get a a note from you PT if your folks agree.