“My leg hurts.” This is the sentence I dread the most. Sometimes it is the first thing my daughter says when she is still mostly asleep. Or the sentence she says at 2am when she wakes me up searching for comfort. JA sucks.
This evening it is what she mutters as she is getting into the shower.
She sits on the bed. A pillow beneath her little legs with a heating pad under her knees. I don’t know how much it helps. But it must…because this sweaty little girl that has always evicted the covers off her bed no matter the temperature wants the hot pad beneath her knees.
This is what I hate most about Florida; The abrupt shifts in temperature and the frequent rain storms. The weather forecast says that the temperature is dropping over 20 degrees overnight. I expected her to complain but I didn’t mention it– hoping it wouldn’t affect her legs. But it does.
I played the flute and oboe for 15 years and followed that with jobs that consist if loud pounding on a keyboard all day. The middle joint of my right ring finger is plagued by arthritis. Tonight it’s bothering me. A nagging throb.
I can’t imagine how such a small preschooler deals with both of her knees and her elbows throbbing and persistently hurting.
I can’t imagine the pain that my mother is feeling and I pray that the temperature shift is not as dramatic in South Florida where she is.
It is times like this that I feel guilty that my mother and my daughter suffer through the chronic pain and only my finger hurts. My mother’s shoulder was replaced due to her RA. I’ve seen the pain in her eyes and hear it in her voice.
I know that she harbors guilt over her grand-daughter’s pain. I tell her that Rheumatoid Arthritis and Juvenile Arthritis are not the same thing but I can tell she doesn’t believe me. She’s hurting.
It is not her fault. She didn’t sneeze on my baby and give her arthritis. This couldn’t have been prevented by washing her hands. It would be like getting angry at your mother because your hair is naturally dark instead of blonde. These things are not within our control.
I want to take it away from both of them. I can’t so instead I hope more people learn about this disease. This disease that affects almost 300,000 children in the US.
During these times, all we can do is offer her comfort. She sits with her big brother on the couch or lies in bed with the heating pad. When it is bad she sits quietly and watches television or stares. When it isn’t as bad she rages. Her frustration and pain are expressed by anger and impatience. All we can do is offer her comfort.
Her big brother asked her once what it feels like when her legs hurt.
“It feels like my legs are going to explode.”
I am thankful that, except for sometimes in the morning, her movement isn’t hindered. She runs, laughs, and plays. When she doesn’t hurt, arthritis doesn’t even cross her mind. This girl lives life and is filled with joy. She’s silly and happy. I have no problem driving an hour and a half to get her to a good pediatric rheumatologist. (By the way, with as many children affected by JA I would think there would be more pediatric rheumatologists.) My fear is that as she gets older, the pain and frustration with take that happiness away from her. I pray every day that she will go into remission and stay that way forever.
Please take some time to learn about Juvenile Arthritis and consider donating or participating in a walk or run, because kids get arthritis too.
Crystal says
I came across your blog yesterday and when I read the line āIt feels like my legs are going to explode,ā I was in tears. My daughter is 10 and was recently diagnosed with JA. I often brush her aches and pains off due to her being a bit dramatic. This is one line I have heard often and just figured she was being over dramatic. We administer the ice packs and heat and also take medications. Your blog describes my daughter in a nutshell, Thank you for sharing your family’s journey with JA and bringing awareness to it.
Herchel says
Hi Crystal,
First, I am so sorry your daughter is going through this. My daughter is now 10 years old as well. Over the past 8 years, I’ve noticed that the pain and flares are worst in the spring when the weather shifts to warmer. Please know that we’re thinking of your daughter and if you have any questions or just need to vent you can ALWAYS email me [email protected]
Adrian says
How interesting. I am making my blog visits to people who have commented on my blog this week. The blogger I just visited before you has written a BOOK on juvinile arthritis. That can’t just be a coincidence and I am always a big believer in the universe working together for our good. I guess you were meant to get to know her if you don’t already. Her blog is Hopefully you will learn something that will help your daughter with her challenges in life. Best wishes to you both and thanks for stopping by Adrian’s Crazy Life!
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Herchel says
Yes. Kim is an inspiration!
Christine @ Love, Life, Surf says
One of the hardest things for me as a parent is watching my child in pain and not being able to take the pain away. I am glad that your daughter is happy and silly outside of these times. My heart goes out to you and your mom too.
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Herchel says
Thank you for the kind words and thoughts, Christine.
Bev says
Oh, your poor daughter! š I can only imagine what it must be like to go through that as a parent, and for your mom to feel like she caused this.
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Sara says
Poor baby girl! I have issues and it breaks my heart to hear others suffer, too. Especially when it’s from an itty bitty!! Hug!
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Kim Miller says
Feeling a little more defeated, hearing about your daughter’s struggles today- and feeling for you as a fellow JA mom who struggles with the same helplessness. Its JUST.SO.HARD. Maybe through the sharing of our struggles we will inspire others to take on this cause too- 300,000 children with just 2million in funding? More kids than Juvenile diabetes, cystic fibrosis and muscular dystrophy combined? Something HAS to be done- maybe we can help be a vehicle for that change. Its the thing that keeps me going…
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Herchel says
Don’t be! I wrote the post after an evening of worrying about her and feeling defeated myself. She is still not really moving much today but is now contentedly watching Pitch Perfect over and over again. You blog and your book are making a difference. YOU inspired me to sign up for the Jingle Bell Run. And I talk alot and overshare so soon everyone around me will be more educated about JA.
Twingle Mommy says
Oh your poor little girl. It just breaks my heart to think of little ones in that much pain. My son has Cerebral Palsy and he has horrible leg pain sometimes. When he was a baby he would scream and cry and I would cry right along with him. It’s gotten better over time but every now and then it sneaks up and rears it’s ugly head.
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Herchel says
I am hoping that it lessens for her as she gets older as well. Thoughts and prayers for you son and I hope he continues to have fewer pain days.
Jennifer Hall says
Hopefully your little girl will take her experience with pain will foster an immense amount of compassion within her for others who struggle with a physical ailment. I hope this for my own children who have a daddy with multiple health problems and a mom with bad eyes. If how I feel about my husband’s health problems is any indication, it must be just awful for your to watch your baby hurting so much. (((HUGS)))
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Herchel says
Thank you Jennifer. She is still young but we are working on instilling compassion and consideration in both of our kids.
Shell says
Like her legs are going to explode? Oh, your poor baby!
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Herchel says
To be fair….she has a flair for the dramatic lol. Right now she is lying in bed watching her favorite movie over and over. On a scale of 1-5 she dropped from a 4 to a 3 because (according to her) I fixed her hair and it makes her feel better when her hair is”not crazy.” ( the painkiller kicked in)
Michelle says
That must be so difficult as a parent to watch. I’m so sorry. My daughter went through growing pains for a long time where she would wake up in the middle of the night screaming because it hurt so bad, and I remember feeling helpless. I can’t imagine how hard it must be to watch something that is ongoing that your child has to deal with constantly. My heart goes out to you.
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Herchel says
Thank you Michelle. It’s harder some days than others. As moms we deal with hard things because we have no choice. I have a good support system and try to remember that the negative people I encounter are just ignorant.
Jhanis says
My 8 yo son first complained of pain on his legs when he was 3yo. We thought it was from all the running and jumping he did but we noticed that he complains at least once per month and we took him to an orthopedic doctor who said he they may just be growing pains and advised a few leg exercises. He still complains about it sometimes but not as frequent as before. Maybe once every 2-3 months. We may need to bring him back to the ortho if it doesn’t go away at all.
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Herchel says
We thought my daughter’s pain were growing pains until her thighs and knees started swelling. It took a long time to diagnose. It’s been a roller coaster for sure.