Back at Day Zero {but Juvenile Arthritis STILL Sucks}

Happy Monday! It’s been a bit busy around here. Last week my husband was out of town and I just got nothing done. I am very lucky that I have a husband that really steps up to the plate and helps out around the house so when he is gone things can get a little crazy. I just felt it a victory that the kids are clean (mostly) and fed and alive. Ha. But I did not get any blogging done at all so I am a little behind on my schedule.

Well..the schedule I put on myself!

So for those of you waiting for more of my phonological series…It’s coming! I’m working on it now :) For now…here is a little update on my daughter…

We Had a Rheumatology Appt This Week

And I was very nervous about this appt. At her last one 3 months ago, she has been inflammation free and the doctor declared we were at day zero. What is day zero? It is the beginning of the countdown to 6 months of no disease activity. Once we get there, we can start to wean E off her meds.

I was so nervous about this appt because about 6 weeks ago we had a set back. E’s fingers swelled up. In fact, she even had a toe swell a little and turn red and hurt and she had never had a toe be involved before. That flare scared me. I was afraid we wouldn’t be back at day zero again but it appears we did! :D Her joints looked great and overall she is good health so…we are back at day zero!

But Juvenile Arthritis Can Kiss My….

I am very thankful that we are back at day zero for so many reasons but let me tell you that JA can kiss my %$@. Every week we have to give E a shot to help suppress her immune system and for the last couple months we have been dealing with a LOT of anxiety around shot night. We have her on an anti nausea medication that helps her to not vomit (a side effect of the med that is both biological and psychological) but that doesn’t help the horrific anxiety she has now. She cries, screams, flails her body and will actually hide from us. She freaks out and says she has to use the bathroom, only to find her hiding under the sink. She says “It is going to hurt more that it does” which I am not entirely sure what she is trying to say. She starts to have anxiety as the day approaches and will say “I’m not getting my boo boo shot tonight.”

It freaking breaks my heart. And my husbands. As I was telling her {amazing} rheumatologist this week, life was easier when she was two. At almost four, she is much more aware of what is going on and has the language to try to communicate about it. She still doesn’t exactly “get” it all of course…she will say “I get my boo boo shot so I can be strong and play on the monkey bars” but she also doesn’t quite understand why she has to have them.

Last night when I put her to sleep I again talked to her about how she has juvenile arthritis and how if she doesn’t take her medicine she will get sick. She was able to tell me what she has and why she gets her shots. I think we will just need to continue to talk, talk, talk about it so she will slowly learn more and more about what is happening to her body.

What Does it Feel Like? 

So E’s meds are chemotherapy meds….just a lower dose than people get when have cancer. That said…depending on how long a child or adult is on this medication, they may actually take more total than a cancer patient takes. It just depends.

Earlier this year, I actually went through all the testing for Rheumatoid Arthritis. I have a couple joints that swell on my right hand (just like my daughter). When I went to the doctor she said “Well there is no connection between adult RA and JA” which I promptly told her “Um, well spend one day talking to the JA community and you will find that is not true at all.”

Not to mention that auto immune diseases have been found to be genetic. Luckily she didn’t blow me off. She listened to me explain how I have friends, mothers of children with JA, who are diagnosed with RA or Lupus as adults.

And those mothers are taking the same medication as E and they have told me that is feels kinda like a hangover, making your head heavy and stomach nauseas. You basically feel like crap.

Children do metabolize the meds better than adults, but to think that that is how my baby feels makes me sick. And there is nothing I can do to stop it.

But We Try To Keep it POSITIVE!

Most of the time when I write about my daughter’s JA here, it is because we are either doing GREAT or not so great. The truth is, we really do keep a positive attitude about this whole thing most of the time.  Because, it is what it is and we are very thankful for the meds we DO have, so that my daughter does not become crippled from her disease, or even become blind from it. Sometimes though, I need this outlet to vent about it. It really helps me get it all out AND update people who ask about her. :)

OK well there it is! I hope to be getting up new posts soon! Thanks for your patience!

 

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About Katie

Katie is a licensed, credentialed and certified pediatric speech-language pathologist and mom to three (5, 3 and 9 months). Her passion about educating, inspiring and empowering parents of children with all abilities led her to start her blog Playing With Words 365 where she shares information about speech and language development, therapy ideas and tips, intervention strategies and a little about her family life too. Katie has been working in the field of speech pathology for 9 years and is certified in The Hanen Centre’s It Takes Two to Talk ® and Target Word ® programs and holds a certificate in Applied Behavior Analysis (ABA). In addition to blogging and being a mommy, Katie works part time in her small private practice in the San Francisco Bay Area. You can follow her on Facebook, Pinterest and Twitter.

Comments

  1. I’m happy you are back at day zero and that much closer to weaning her off her meds. It must be so difficult watching her go through this, but you are doing an amazing job. I imagine staying positive can be very, very difficult. I’ll be thinking of her, and hoping for no more flare ups!
    Carolyn recently posted..Chomp!: A Game Inspired by Bill and Pete to the RescueMy Profile

    • Carolyn, it can be hard some days to stay positive. I think it’s mostly the days we have to do the shots that suck. I have my own anxiety of how much anxiety E will have. Ha. But overall we try to stay positive.

  2. Oh! Every time I read one of your JA posts I just think, “That is so much for a little girl to go through!” I’m so glad she’s still at day zero! I hope she continues to do better–sending you guys internet hugs an prayers!!
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  3. Thank you for writing so honestly. My daughter is 32 and on similar meds and biologic medicine, too. It is never gone (psoriatic arthritis). My heart goes out to you and your daughter. I so appreciate your blog. Prayers,
    Carolyn
    Carolyn Wilhelm recently posted..Free: Pocket Day and Data Day SMART Board Lesson on TpTMy Profile

  4. Peg Franklin says:

    I am so thrilled to hear this great news. Your daughter is always in my thoughts. I went to school with your mother in law. I have grandchildren and I pray every day that they stay healthy. E is such a beautiful, strong little girl and my prayers are that she will be pain free

  5. Jeanne Athanacio says:

    yeah for day zero……You and Justin are great parents. It’s so hard to watch your child go thru pain. One thought just remember out of all the parents in the world GOD chose you and Justin to be the parents of E. HE trusted you two with this challenge.

  6. Thinking of you guys. Must be horrible to see her so upset and know she is going through pain. Your blog as taught me so much about this disease and now our staff is doing a fundraiser this year in honor of a student who has JA. Keep spreading the word.

    • Jenna THANK you! And it makes me so happy to hear your staff is fundraising for JA!!!!! That seriously makes my MONTH! Please please please thank them for me!

  7. Paula Townsend says:

    My heart goes out to you and your family. Thanks for educating us about JA. I’ve certainly gained a much better understanding of the disease through your blog. I will keep your family in my prayers. Hope you have a wonderful holiday season.

    • Paula, thank you so much for the thoughts and prayers, we appreciate it so very much. I too hope you have an amazing Holiday season as well!

  8. I am a kindergarten teacher at a school in Glenwood IA. Our speech teacher uses your blog for ideas and brought me a print out about your daughter with JA. My daughter is 9 and has had JA for nearly 4 years now. I can’t begin to tell you how much I could relate to your comments! We are also on Methotrexate as well as Enbrel injections each week. Just out of curiosity…where are you located. I love your honesty as well as your optimism! I started a local JA support group and am going to send this link to all of our families!!! THANK YOU for putting into words what so many of us feel!

    • Hi Michelle! I am SO glad a fellow SLP shared this with you…PLEASE thank her! I wanted to use this blog not only to share speech & language ideas but also as an outlet to both educate others with JA and connect with other families. I am located in the San Francisco Bay Area in California and our doctors are at Stanford (LPCH). Enbrel is a medication we would be headed for if the MTX stops working and I am quite familiar with it. I am truly sorry that your daughter has to struggle with this disease as well. Like I said, it can kiss my &%$ ;) But it is what it is so we keep on going and hoping we find a cure someday! We participate every year in the Arthritis Walk to help fundraise and we are planning to go to the JA conference next summer. Have you even been? Also, I am part of a couple JA support groups on FB…let me know if you’d like to get connected with other JA families that way (if you aren’t already part of them). You can email me Katie@playingwithwords365.com any time! GOOD LUCK and happy holidays!

      • I would LOVE to get connected with others for a support group!!!!
        We went to the last JA conference in St. Louis and it was the BEST!!!! Like a retreat and convention all rolled into one. I was able to meet the person who is planning the one in CA and she is a wonderful person. We are trying to figure out how to make it to CA this summer!
        Please send me info on the online support groups when you have a spare minute, (Yeah, right!)
        My email is mmillar_65@yahoo.com

  9. Hi there!! I was so thrilled to see your post! You are right.. JRA does stink!! I too am a speech pathologist and I was diagnosed with Juvenille Rheumatoid Arthritis at the age of 3 (I’m now 41). I’ve never heard the saying of Day Zero.. I love it. I’m so happy to hear she is there.. I’ve been medicine free for about 3 years now..Just remember as much as it does suck, she will get through it!!! I’m proof.. I now have 2 children, married, an awesome career (and a side job of photography) :)

    • Audra, thank you so much for your kind words! I am so happy to hear you have been med free! Congrats! That gives me hope for my little girl. :)

  10. First, love your blog and ideas!
    I know a family in which the mother has lupus, dad has RA and 2 of the children were diagnosed with JRA. And as someone in a family with multiple cases of MS, I get frustrated as well when doctors say things aren’t genetic. All I can say is continue advocating for yourself and daughter! I also wish you and your family the best holiday season and hope 2013 brings more days pain free smiley days filled with laughter and joy!

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