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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.

Friday, May 17, 2013

Wake me from this nightmare...

So it has been awhile since I have updated the blog. Sorry about that. I have mostly been using the Beanz Buddiez Facebook page for raising awareness and keeping folks up to date. It's just easier than blogging. So let me see if I can bring you up to date and keep it brief.....Here is a brief synopsis of what has happened since last Summer.... In December of 2012, we took Jenna off of Methotrexate. Her body was no longer tolerating it. She was switched over to Arava, with seemingly no issues. In January she was declared in medicated remission from both the JIA and the Uveitis. MAJOR praise moment! We took her off of the daily Meloxicam and bumped the Humira from every 14 days to every 21 days. Revisit in 8 weeks. Go back in 8 weeks to find fluid on both knees and the words "active disease" were uttered again. Well crud. Hold all meds, no more weaning, add daily Meloxicam back into her meds, come back in 8 weeks. WHICH, brings us to today's appointment. For the past 4-6 weeks Jenna has been having SIGNIFICANT hair loss. Yeah, kids with arthritis can lose their hair too. I'll bet you didn't know that. We hadn't changed any meds since January, so I didn't suspect meds. I didn't call her pediatrician or rheumatologists. I just figured I would ask at this appointment. I also could not see where the hair was coming from. I saw no thinning or balding despite the fallout being significant. As soon as Dr. V came in, she saw it. All along the hairline in the front, like male pattern baldness. Of course now that is all that I can see. Apparently Arava causes hair loss. Great. So we are to stop that immediately. Over the past week Jenna has been limping and complaining of ankle and foot pain. Dr. V couldn't see or feel anything in the feet or ankles. But Jenna was clearly feeling pain when touched and manipulated. Some more poking and prodding, her knees looked much better. Some more poking, prodding, manipulating....what is up with the feet and ankles? Dr. V did some moves with Jenna that she doesn't normally do...AHA...what's that? Jenna's leg was "catching". Is it her hip? No.....no pain there. Where is the pain Jenna? She points to her knee. More poking, prodding and "milking". AHA, there is something there! Well crud. Not only does Jenna not get to come off of Humira, but we will be going back to every 14 days. Dr. V said to hold off until we get lab results and she sees today's xrays. She needs a DMARD with the Humira in order for it to work properly. She is going back on Methotrexate. Well double crud. We are going to try taking it in pill form this time. Hopefully that will be easier on her system, won't make her sick for 3 days and won't make her hair fall out. We will see Dr. V again in one month. She will also see ophthalmology that same day. Today was just rheumatology. So it should have been a quick in, out and back home. Nope. Left at 7:30 AM, got home at 3:45 PM. I am tired, my brain is fried and I am frustrated. Could things be worse? Of course! Things can always be worse. Always. Am I grateful for our many blessings? You betcha! I count them daily and thank God for them. But am I pissed off? Oh yeah you betcha. FIVE years my daughter has fought this war. That is more than half of her life and there is NO end in sight right now. That makes me angry. So very angry. What makes it worse is that these kids, all 300,000 of them, are invisible. No one seems to care. Arthritis isn't glamorous enough to make people care. That just makes the anger and the hurt so much worse. These kids deserve so much better than this. Tomorrow is our arthritis walk at the US National Whitewater Center in Charlotte NC. I will be there with a heavy heart. Thankfully, I have met some incredible people through this journey and some of them be there tomorrow. The major blessing of this curse is the bonds formed through the war.

2 comments:

Danielle Tipton said...

I am so sorry, A. I remember a long time ago thinking, "my daughter will never flare". It was always a shock when she did, but we had never started weaning. She must be so crushed, too. :( I hope that this flare passes quickly and you can start weaning again. Love and prayers to you all!

P.S.- LOVE that Plumb song! We got it on iTunes when it first got air play. Emily loves it the most, I think!

Jessica Noonan said...

Just found your blog. I have RA too that's not under control. Anyway, I'm wondering if your daughter can take zofran for nausea. It has been so wonderful for me and is safe enough for pregnant women too. I don't know why Drs don't consider it when we struggle with nausea. Maybe they don't believe the nausea is so bad. Anyway, just a thought.