Spoon Theory - A great way to understand Arthritis

The Spoon Theory is Christine Miserandino’s story about how she explained her chronic pain condition to a friend.

This is the best description of what it is like living with Arthritis that I have seen. I will never know what it is like, but this does apply well to Arthritis.

Please take the time to read Christine Miserandino’s personal story and analogy of what it is like to live with sickness or disability. It will really teach you what it is like..

The Spoon Theory

Daddy's First Shot

So, wanting to be involved in our daughter's care, I have learned about everything that we give her or ask her to do. I taste each one of her medicines to see how bad it tastes and try to put myself in her shoes. I always show her that I am tasting it so that she knows that I know how bad it tastes :)

My wife was an LPN so when we started MTX shots she was the one who gave them. I told Addie that I would like to learn how so that if mommy wasn't around on shot night she could still get them. I asked her to pick a date on the calendar and she could pick any of 4, so she picked the last one.

Well Monday night was the big night and I was a little nervous but I drew up the shot and gave it to her. She said it hurt a little more than when mommy does it (of course!) but said I could give it to her again.

I think it is important for everyone involved in the care of a child with JRA to learn all about the treatment.

If you have been holding off on learning how to do the shots, DON'T! Participate and feel part of the team.

A new kid

I have heard this many times over the last month or so. She is like a whole new kid! Our daughter's MTX injections are allowing her to act like a kid again and no one recognizes her. Gone is the shy quiet girl and out has come the overactive outgoing girl :) I am amazed at how much energy she has!

It does make me sad to realize how much pain she must have been in because she hasn't ever been very active. Now she is climbing all over stuff, running around and can keep up with the other kids her age.

This weekend we had soccer for the first time and we pretty much ran for an hour straight. She kept right up with the other kids and didn't complain of her knees hurting afterwards.

Her right knee is still swollen so MTX hasn't put her in remission yet but it has sure helped with her symptoms.

The hardest part about Arthritis is it is so hard to see the effects, we just never knew how much it was effecting her.

It never seems to end

It seems like every day I have something new that I worry about with our daughter's arthritis. Every time that she says something hurts I ask her 20 questions to decide if it's normal kid rough housing pain or an Arthritis flare.

Last night she almost fell off of her swings and ended up hanging upside down. My second thought (after determining she was okay, just scared) was did she tweak on joints that is going to cause a flare. This morning I checked her over and moved all her joints and all seems well but it's something else to watch.

I'm not complaining, she is doing GREAT on MTX, hopefully her knee will come down and not be affected in the next few months.

It just seems like we can't do much to fight the disease other than to keep an eye out the best we can.

On the other hand we also have an infant son so I do my best to give him as much attention as I do our daughter. I am sure in the future I will have to really watch that to ensure we aren't being unbalanced :)

I thank god for my wife, she's a nurse and her background helps so much! She knows how to do the shots and knows when to be concerned and when not to be. She's the rock :)

Hope everyone is having a great spring!! Bring on summer!

Omega 3's and Inflamation

It seems every time you turn on the news there is a study that shoes that fish oil can solve your health problems :)

However, there has been some pretty good stories lately about Omega 3's reducing inflammation. For this reason we started our daughter on them, they make some gummies that she really doesn't mind(They don't smell the greatest though).

A link is below to information:
http://www.arthritistoday.org/nutrition-and-weight-loss/healthy-eating/food-and-inflammation/fatty-acids-benefits.php

I'm not sold that it helps her inflammation but I haven't read much that says not to use them so we have her on them for the other benefits with a plus that it may help with inflammation.

Couple things I learned - Head lice and bruising

Disclaimer: Our daughter hasn't had head lice but is just starting into school so the chances are increasing.

Certain head lice shampoos and products shouldn't be used by those with JRA. Basically those with pesticides in them shouldn't be used by children with Autoimmune diseases. A link to a sad story is here: http://www.headlice.org/jesseproject/index.htm

Bruising
Naproxen can cause children to bruise more easily. Our Rhuem isn't as concerned about the bruises on the front of the shins, but bruising on the arms or other locations should be looked at. We have noticed our daughter bruising more easily but it hasn't been too bad.

Omega 3's can also cause easier bruising.

Pizza Hut Fundraiser - Sauk City

Pizza Hut in Sauk City is gracious enough to host a fundraiser for us!

Where: Pizza Hut - Sauk City
When: April 28th from 5-8pm
What: Pasta Buffet for only $6
1/2 of the the fee goes directly to the Arthritis Foundation!

Thanks for the support!

Dr. Huttenlocher Appointment

We had our regular appointment with Dr. Huttenlocher at the children's hospital today. Good news, she is looking much better! The swelling in her ankle is gone and her knee is better. We get to reduce her naproxen to once a day, so she will like that.

Mary Kay stopped by with her basket of goodies and she got to pick out a couple, she loves that :)

She had her blood drawn as usual, results pending :)

The "A" Team is still raising money for the walk, current tally is $2342 with more pledges to be received.

Shirts have been ordered and should be in soon.

Looking forward to the walk on May 8th. See you all there :)

Spring Update

She is a new girl on Methotrexate! It's not just me that thinks so, others have said that they don't recognize her either. She has so much energy, runs and plays like never before. Preschool has also made her so much more outgoing, just what we wanted.

Most days we take a 20 minute (one way) bike ride to the park after I pick her up from daycare. Last year she could ride her bike about half that distance, now she goes to the park with ease :)

The "A" Team fundraising has been a HUGE sucess so far, we have raised $2020 so far with pledges of over $100 yet to come in. We also have mobiles out at local businesses that are brining in money. REMINDER: The walk is on May 8th at 10am.

Thank you so much to all of our Family, Friends and Neighbors for supporting her. It means the world to us!!