Saturday, June 25, 2011

Another year had gone by

It is hard to believe another year has past. Allison is still in a non-medicated remission and doing amazingly well. This disease does continue to remind us it is still around on occasion. We have learned that when Allison becomes sick with a virus/flu it takes longer for her to fight it off, her joints will ache and sometimes swell when she is ill. When the weather changes she seems to be achey and sore but so far Aleve seems to controls those issues when they arrive. Her body sometimes acts funky and we aren't sure why, but figure it is something with her immune system. In the spring she dealt with breaking out with rashes on her legs and feet each time she showered. The rash was very red and would hurt and burn for up to 30 minutes and then be gone. So, what we have learned is we listen to Allison and her body. We treat symptoms as they occur and document it all. Luckily, nothing has been severe enough to return to the rheumy or to cause great concern. Allison is good about sharing how she is feeling and we encourage her to tell us when her body is giving her cues that something is not right or going on.

Talking with Allison the other night around the fire she confided in us that when she was first diagnosed and so sick she really believed she was going to die. :( Makes me sad to think she thought that. It was a scary time for all. We were telling her about MAS (microphage activation syndrome) that can effect kids who are diagnosed with Systemic JRA and that it can lead to death at times. She told us she was glad we never told her about that because she was scared enough without knowing about MAS.

Our journey with jar continues and thankfully God has blessed Allison to be in good health right now. We do not take that for granted and feel blessed each day she feels good. Especially when there are so many kiddos out there that suffer so much daily with their symptoms from this terrible disease. A cure must be found!!!

8 comments:

Deetipton said...

I'm so thrilled that she have been blessed with remission! That gives hope to a lot of us other JA families. Thank you for sharing your story.

Jacob's Mom said...

So glad she continues to do well!!
Hope you guys are enjoying summer!

Joanne

Jenna said...

Hi Allison
My name is Jenna and I came across your site. u are a courageous, strong, determined fighter. U are a beautiful brave warrior, smilen champ and an inspirational hero. I apparently have arthritis in my legs but the doctor didn;t tell me what type. My leg swells really bad when I walk, and it even goese purple. It is swallen right now. I haven't even been walking on it. I also have a rare bone disease that effects all my bone joints. I love it when people sign my guestbook. www.miraclechamp.webs.com

beachbirdie said...

I am so glad Allison is doing so well and glad you posted this note!

I've been thinking about you guys over this year.

I was wondering...I just came across something that came out earlier this year, about JRA and celiac disease being possibly a close tie. Since we just found out we have celiac genes, and I have an autoimmune thing related to gluten (as well as a celiac gene).
\
I wondered if Allison had been thoroughly checked for that possibility or if you had tried gluten free eating for her? It's helped us a LOT (especially me and my son).

beachbirdie said...

Forgot to insert link to article!

The Food Doc talks about celiac and JRA.

And another one here.

EMR said...

It is hard when children suffer...because with them suffer the caregivers and the parents who suffer without the physical pain.I hope she is brave enough to fight it out.

Dana Morningstar said...

Hi, I volunteer with IAAM (International Autoimmune Arthritis Movement~formerly the Buckle-Me-Up Movement!). What we've be working on in February and March has been reaching out to people on our JA blogger list and asking if we can post them as a resource on the JA page. To start, could we have contact info from you to add to our blogger list for our records. And if you give us the info, then we will also post your blog as a resource for others on the JA page. Please email me at danalm_iaam@yahoo.com and let me know.
We also invite you to participate in World Autoimmune Arthritis Day on May 20th 2012!

World Autoimmune Arthritis Day
events.r20.constantcontact.com

Join us for a 47 hour, Global Online Virtual Convention aimed to bring global awareness while learning more about your disease and ways to manage it best!

Thanks, Dana M

Sharon said...

It sure is the most devastating situation to see your child suffering and "US" being parents can't do anything about it. But did you know that stem cell therapy is a treatment for pains caused in the joints as a result of the arthritis. In fact this treatment works better in children and that's good news!

It is a treatment method where a consumption of bone marrow is extracted and the separated stem cells are re-inserted with an injection in the effected area.Hopefully this will be helpful to you. Wishing you all good health!