NRAS
22,453 members26,189 posts

Not living, just surviving today!

I woke up this morning with swollen hands, ankles, knees, and feet! Got out of bed to get something to eat with my meds, no bread for toast. Grab a yogurt instead, heat some coffee, and hobble back to bed to get meds ready. 14 pills later, the real struggle begins, it's time to get dressed. I have a training session to go to for Girl Scouts. I can't let my daughter down, so I start getting ready to leave my sanctuary.

I get to the training centre, and they hand us notebooks and pens 😬! I explained to the instructor that I have uncontrolled RA and cannot write that much anymore. I ask " Do you have a summation for those that cannot take notes?" She says no. Does anyone know if Girl Scouts has a plan for Girls and leaders with these kinds of disability? If not, any suggestions for creating one? More and more kids are being diagnosed with autoimmune disease, so there is a need for a plan of action.

Thanks in advance for your help,

Mandy

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Surely someone could take the notes for you darling.xxxx

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Do you have a Speech to Text facility on your phone that you could use? Or use the voice recording facility and submit it to them in a verbal form?

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You could ask if one or more of the other people could email you their notes?

Record the whole thing yourself?

Ask for the instructors notes to be emailed to you later?

Ask if there is a manual you can read?

As you can see ...had lots of practice coping with this problem.

Now I usually manage with fat pens, pencils with a foam holder and mobile phone with keyboard set for fat fingers to take down anything absolutely essential and practice listening carefully to remember what is said.

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Hi Mandy8175,

Lots of tips below already!

I see that you're in the US but certainly in the UK the Girl Guides have extra support for those with disabilities - girlguiding.org.uk/informat...

At the moment we're working with the Health Conditions in Schools Alliance medicalconditionsatschool.o... and have a booklet called Managing JIA in School that helps make teachers aware of juvenile arthritis and the extra care pupils need.

Hopefully that might help make a plan, if the scouts don't have one already.

Best wishes

NRAS-Emma

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Thank you Emma! I have our service unit manager checking into it as well. She doesn't think there is a plan, and if not I will facilitate a group to write an effective plan for kids with chronic illness, especially the hidden ones!

No one helped with taking notes or agreed to email them, healthy people have no idea what we go through. The saddest part is that these young woman are molding children's minds.

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