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Totties Pretties on Etsy

Totties Pretties on Etsy
Tottie's Pretties are ribbon wrapped headbands adorned with flowers & gems or perfect boutique bows. Banding Girls Together to Find a Cure for Childhood Arthritis. Tottie's supports CARRA and the Arthritis Foundation.

Wednesday, April 8, 2009

She is in so Much Pain


My poor Bean has been in so much pain lately. I just don't know what to do for her. She is her own worst enemy of course. Seeing as how she is an active five year old she isn't exactly doing anything to help herself out but what am I supposed to do? FORCE her to lay down and rest her body?? How on Earth would I even do that? It has been at least 2 maybe 3 weeks now that she is walking funny. Complaining ALOT. She can't sit in a chair. She does this weird squat thing. Doesn't look comfy to me but hey it works for her. I can't get her to keep shoes on her feet. We keep buying different ones hoping we will find a pair that feels good. So far the only thing that feels good is bare feet. Socks are usually off too. Fine at home but out in public we get some looks ya know? Plus who knows what she is walking on. *shudder* She is complaining of pain in odd places. She has the normal leg and feet complaints but now she also has chest and eyebrow pain. Huh? What the heck does THAT mean?? Again...she is only five so getting her to articulate these pains is nearly impossible. Is it an ache or a burn? A sharp pain? Where exactly is it? Is it your heart? Lungs? Ribs? Breast bone? What do you mean your eyebrow? Is it your eye? HOW does it hurt? ARGH!! I called our regular family doctor so I could check in with her to see what she thinks about how Jenna is doing. May 19th!! That is the soonest she can see her. *sigh* Yeah I CAN call her rheumatologist but I am just not sure that he is doing all he can for Jenna. So DO I call him? I just don't know. All I know is that we have not tamed this beast sufficiently. Instead of showing signs of improvement she is getting worse. She didn't even want to go to school today. Jenna LOVES school. LOVES it. Loves her teacher, loves all her friends and the activities. Plus the playground is accessible now that all the snow finally melted. She LOOOOOves the playground. She clung to me wanting to stay home. I hugged and kissed her, pried her off my arm and sent her away with Daddy. Did I do the right thing? I just don't know. She is also SO tired. Is it the meds? The disease itself? Is it a disease? Or a condition? Anyway....I am attaching a photo taken last night. Her knees look awful to me but what do I know?

9 comments:

S and S said...

Have you tried real crocs? They sell them at Lamey Wellahams. I know they're going out of style, but the help with pain. My mom could hardly walk and she loved her crocs. My sister has an unknown immune disease, arthritis and fibro and her crocs are comfy for her too. They make ones without holes too, so they can be worn on rainy and snowy days.

Amy Cunningham said...

She DOES have crocs. So far they are the best for her but even those are bothering her lately. She has the regular summer ones and she also has the fleece lined winter ones. Has to be the croc brand though not fake ones.

Cindy Price said...

I have been reading your blog from Jacob's blog in Boston, via Charlotte's blog in Washington. I run a support group in Oregon for Jra. Man, waiting until mid May to be seen by your family practitioner is nuts. Your child should be a normal 5 year old. That's the goal. When it settles in to one joint for long with our daughter, I schedule an injection. Go with your gut. You are the momma and you know her best. If you want, I can send you my email to correspond further. We are in our tenth year with the disease. Hang in there. Cindy

Amy Cunningham said...

Hey Cindy..nice to "meet" you. Is your blog linked on either Jacob or Charlottes blog? I would love to read yours. Wow ten years...you must be an expert by now! Jenna was just diagnosed last Summer so we are still green and clueless. I also just do NOT feel that she is being treated properly. It seems as though she should be getting more relief. She is NOT functioning as a normal five year old. Very sad. But...on a good note...today she feels GREAT! It's remarkable the difference from yesterday to today. I was told this morning by Jacobs Mom that that is basically the nature of the beast. So now we wait for it to come back.

Cindy Price said...

No, I don't have a blog. I am not that high tech. Email is bc.price@comcast.net.
If it is moving around that can be a good thing. When it settles into one joint, it can do damage that way. Also, when your daughter gets sick, it will tweak the arthritis. Her arthritis will be active before, during, and a little after the illness. Don't freak out. Be patient and let her immune system calm down. Kids with jra will also fatigue much easier. Our daughter has systemic jra.
Go with your gut on the doctor. You know your daughter the best. Email me and we can chat more.

Cindy Price said...

p.s.

I am a friend of Erika's. i.e. Charlotte's blog. She can vouch that I am not some nut case. Erika is in our support group here in Oregon. She lives on the border of WA and OR.

Lesli said...

I know what you mean about the whole shoe ordeal!! My daughter complains all the time about her feet hurting her. We have bought so many shoes and the only thing we have found that doesn't seem to hurt her are ugg boots. I know they are expensive but I guess you will do anything to see your baby NOT in pain. She wears them EVERYWHERE.. I dont know what we will do this summer?? I am with Cindy.. I can't believe your Dr would not see her any earlier esp with her arthritis.. seems long to me.. also, I felt the same way about our first PR so we changed and are happier now...its crazy how some PR treat very aggressively and some are more laid back and less aggressive. Just be persistent!! I hope things get better!

Amy Cunningham said...

Lesli...Jennas second favorite shoes ( crocs being the first ) are her "furry boots". We have not yet invested in the real Uggs for her but we search for really good quality imitations. She wears them with no socks as she loves the way the fur feels on her skin :o) I think next Fall we will get her the real deal. Even in the Summer she is typically barefoot! She walks across hot pavement like it is nothing...I don't know maybe the heat feels good to her. As far as getting her in to her doctor...I am keeping a VERY vigilant eye on her. She is doing good for the moment...watching VERY closely.

Kristin said...

Hi, I found your blog from Jacob's JRA and Uveitis Journey blog. My name is Kristin, and my little boy has JRA/Uveitis as well...you are welcome to look at our blog anytime. It's listed on Jacob's blog under Parker's JRA/Uveitis fight. It's been nice finding these blogs. It helps Parker to see that he's not alone and other kids have to take meds/get shots, too. Glad you have a blog about it! Thanks!