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Posted , 7 users are following.
I am 25 years old, diagnosed at 14 with AS. In the last couple of years it has gotten progressively worse, in my legs and feet. I can bearly walk in the mornings and through the night.
I work in a special needs school and sometimes have to deal with aggressive behaviour, the struggle of getting to work, functioning all day and the risk of getting hurt is getting too much. I love my job but am not sure I can cope. What do i do?!?!😖
0 likes, 25 replies
Yogee alice03428
Posted
That is fantastic that you have been offered another position working with special needs even though it is part time. I worked with special needs students before retiring so I can understand your love for these guys....you are truly dedicated to not want to leave them. I don't mean to pry but what treatment have you received since being diagnosed so early in life....and you are still so young. Would seeing another rheumatologist help?
alice03428 Yogee
Posted
I am pleased that they don't want me to leave and the hospital have suggested not throwing in the towel yet. I love them and love my job so i will keep plodding on, it makes me happy!
I see my rheumatologist every 2 to 3 months and she is great, just all such a long process. I have had the usual tests and poking and prodding. I have recently had joints drained and cortisone injected in various places. Physiotherapy, podiatry, i take a handful of tablets a day, and inject myself weekly with methotrexate (although they are in the process of changing my injection because its not working and is making me poorly)
Yogee alice03428
Posted
ihavenonickname alice03428
Posted
Hi Alice
My aunt was a special needs teacher for decades...Yes, this work can be very physical...I know because I have worked along side of her as her assistant on occassion
I don't think that those who do not work in this field understand the aggression brain injury can cause.
So, I do have a thought....Here in the USA we have the Shriner's Children's Hospital...free medical care for children in two types of hospitals...burn care and orthopaedics. These children are flown here from all over the world to be treated They come alone great distances, not speaking English/American. While they are hospitalized they must attend school. Their teachers from home send in lesson plans.
I think this type of work would suite both you and your lousy AS to a tee.
As to your AS...are you under the care of a good rheumatologist?
are you on effective medication?
Frankly, your medication may need to be reviewed.
Why can you barely walk? I ask this in a constructive manner. Is the reason you did too much? abd just what is too much? These types of questions kept in a dairy can be key to learning so much about your AS. Perhaps I forgot to mention I am 65 and I have had severe JRA since I was11.
Alice, have you ever considered a powered mobility device? No, it is not about giving up...sitting in a straight back chair is giving up. Powered mobility is on wheels, it moves, it does the hard drudgery work so that you can use your strength to do more important things. You can waste your energy struggling to walk, holding your breath as you walk in pain, or you can ride in style without pain.
My new chair is in process...black with purple hub caps.
I have made 54 years living despite JRA by learning how to sort out what is good for me to do versus what is just a taxing waste of my precious energy.
Whatever my experience can give to you, just ask
hugs
hope4cure ihavenonickname
Posted
Great idea. Then the kids will have trouble keeping up with her then ?she could Rent one for awhile . Ya never know, mabe a answer if not just a temp. Solution . I don't know how she could stand and work all day . I'd be in bed For a week!
trouble shooter!