Advice to a Young Friend

So recently, a friend contacted me that a child she knew was diagnosed with psoriatic arthritis – heartbreaking. Given that I have two children (now young adults) who were diagnosed with autoimmune disorders at a young age, she asked if I had any advice.

Yes. I do have advice.

Caution: my perspective is quite blunt, never medically comprehensive, and comes from my own personal experiences. I don’t know that I ever wondered why me? But if I did, I learned why – to help my kids. My gene pool is apparently a swamp.

My response…

Here is what we learned through my experiences and my girls. In fact, Dazlin might be a good one for her to talk to – she has the severe joint pain and was diagnosed at 13-14 years old. (Charis was diagnosed with lupus at 12, but Dazlin has the more prominent joint pain).

School

  • let the school know and have them work with her on having two sets of books so she doesn’t have to carry them around. One set at home. one at school. The weight that these kids carry around is atrocious.
  • The school can also work on where classes are located and provide access to elevators if needed (and give her more time to get between classes, especially on rainy or cold days).
  • They can give her a quiet place to take tests (this is more important later) so she can shift and move around without disturbing others.
  • She may also need more time if joints hurt and she is doing intensive writing.
  • They can also give her someone to write for her for notes and tests.
  • Work with school nurse to have meds at school.
  • She may need to alter any required activity, like PE.
  • She may need to develop an individual education plan with the school so these accommodations are protected.
  • And the SAT/ACT offer accommodations.

General life

  • Get a disability placard and learn to pace herself. She may not feel like she needs it, but there will be times she does.
  • Warm baths in the morning if she can take the time to soak.
  • Dazlin swears by the sulfasalazine – a med for joint pain. I like voltaren gel.
  • Eat healthy. including perhaps gluten free or even paleo.
  • Build exercise into her regimen now – nothing strenuous, but something that keeps the body moving and promotes flexibility. Yoga may not be good, puts a lot of stress on joints.
  • Maintain a schedule – eat at same time, sleep at same time. the body loves predictability.
  • If she is going to travel, be alert – window seat so she can slump on side, heat packs, ice packs.
  • Buy wrist braces, they make some built for women, smaller, gray, I get them at target, but drug stores have them too.
  • Learn to self-meditate. it helps with frustration and pain. I use breathing and can get down to two per minute within 5 minutes.

And she needs to understand that it is not just joints (as you already mentioned- other body parts are involved).

Conserve energy and learn to pace….this is probably the best way for her or anyone to understand: the story of spoons. Brilliant and correct.

Also, yes, there is no cure, but there is quality of life. Ride this beast until she is old and gray. Have the attitude that it won’t kill me, it’ll just be a pain in the butt until she’s 102.

Mom also needs to understand that they will all go through the stages of grief with this – anger, bargaining, despair – over and over. And they will get tired of it and exhausted from it and it is all part of the package. It affects the mind and emotions and she will both play it up and use it – while she is coming to grips with it. It’s a way of coping and it is real. She will have to learn when to go to doc, when to go to ER, and when they can do nothing for her. Especially in ER, be prepared to face them thinking she is a pain drug seeker. Not so much as a child, but later. And she will have things going on that they will not be able to explain, it will just be her. Meaning nothing will fix it – but she – they all – can learn to cope, physically, mentally, and emotionally.

 

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