Allow me to paint a picture for you, please. If I do this right, then you will never utter the words, "It's just arthritis, it's not serious", ever again.
Friday night in our house is "shot night". Nope, not talking about pouring my favorite liquor into a tiny glass and tossing it back. I'm talking about injecting our youngest child with toxic medications in order to attempt to control her chronic illnesses and stop them from destroying her body. That in itself is a horrible position for a parent to be in. Which is better? Taking our chances with the diseases destroying her? Or take our chances with the medications destroying her? Hmm....what would you do if it was your child? I pray that you never have to face that decision.
So, back to shot night. We do this every Friday. We have been for the past 4 years. But it's not just Friday really. The countdown starts as soon as the injections are done. 7 days, 168 hours, until we have to do this all over again. The stress and anxiety is every day because you know it's coming around again. There is also the daily reminder of the injections thanks to the daily meds she has to take to attempt to counteract the side effects of the injections. Though those don't always work so well. Then the alarm goes off on Friday letting you know that it's time. You get the med basket out, prepare the syringes, have your child get her comfort items and get in her favored "shot spot". All the while she is crying, begging you to please not do this, please not hurt her, asking you WHY are you doing this to her again. Now it's time, everything is ready. In our house, Daddy does the injections, Mommy does the hand holding and soothing. Every week another chunk of my heart breaks listening to her screams, seeing the look of absolute terror all over her face as the medicine goes into her and burns like acid. I hate it. I hate everything about it. The real kicker is that despite these medications, she still experiences periods of pain, stiffness, discomfort. You know how your body feels when you have the flu? That feeling of, "Man, I feel like I've been hit by a bus.". Yeah, imagine being a child and LIVING with that feeling.
Still think it's "just arthritis, nothing serious"?
This is the story of Jenna (AKA Bean). Diagnosed at four years old with Juvenile Idiopathic Arthritis and Uveitis. This is her journey....
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.
9 comments:
Brutal. Just brutal. Thanks for putting it into words. I try so hard not to think about what these meds might be doing to our kids..... I am so grateful for them...... I hate them..... I HATE arthritis!
Hope this non -flare flare leaves soon.
Kirsten, mom to Katherine
Perfectly Stated... <3 Love you Amy... and Jenna Bean
I have to agree that this is perfectly written. I feel the same as you every two weeks. <3 Love to you and Bean as well.
Our shot night is Wednesday. You said everything I feel. Thank you. Last week our little guy got so upset about having to get his injection again that he actually threw up afterwards. I hate this disease and I hate what our kids have to go through to no be in pain all the time. Thank you for this post.
Oh ladies, I cannot thank you enough for your comments!!! I was in a mood yesterday and when I get in a mood, these kinds of posts come out of me. I never know whether or not to share them. So I thank you so very much with all of my heart for your words. <3
Hi Amy I noticed my daughter had posted this link to her facebook page With something that said something to the order of "this describes how I feel; so sad 100% true" so I had to read. It is very well written and exactly how I feel about the choices. Now Megan is 18 and she has to make the choices..drugs or walking? We were blessed that we never had to deal with the stress of the crying and begging. Megan was older when she was diagnosed. I hope and pray as Jenna gets older the actual process gets better.
Maureen
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!
I know you have already made a poster, so pass on the invitation to as many people as possible. :D
Thanks, Dana M
Just found your blog. Perfectly stated! Exactly how I feel!
Aawwww man. Is this what my wife and I will have to face as we begin the weekly injections on our 2 1/2 yr old girl? I'm already ticked off at the world and we haven't even gotten the syringes in our hands yet. sigh..poor kid.
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