Tuesday, August 16, 2016

Update: JA and My Super Kid

Emma is amazing.

(I'm sure I've said that before, and I know for a fact that I'll say it again, but I just want to make sure you all know it.)

My freckle-faced Bean is going to start first grade soon. She is also in the process of weaning off of her arthritis medication. Again. (She has auto-immune juvenile arthritis.) Enbrel is her magical drug. It has worked to completely eliminate her inflammation every time we have used it. However, the goal is to not be on this stuff forever. The long-term effects of these meds really aren't known. So, when her disease is under control for a year, we say goodbye to the medication.

The first time we weaned off of meds, she had only eight weeks before her knee blew up like a painful, stiff balloon. The second time, she enjoyed five glorious months before the arthritis crept back into her joints. Once again, she has been in medicated remission for about a year, so once again, we slowly taper off of the Enbrel and check for any re-emerging signs of active arthritis. It will be a gradual process. Currently, I'm still giving her weekly injections, but I am under-dosing her. We'll see her rheumatologist in a few months and plan where to go from there.

I have a little bit of nervousness about this wean, because, you know... SCHOOL. I'm worried that without her magical Enbrel, she will eventually flare, and it will affect her school life.

Do you remember being a kid and running around the playground, loving your first grade teacher, coloring, and reading? Were you just trying to have fun, master the monkey bars, figure out those darn "rule breakers" while reading, and enjoy time with your friends? Wasn't it awesome, singing songs, discovering your skills as a writer, becoming a budding mathematician? Maybe you were different, or you worried you would be thought of as different and then not accepted by other kids. Maybe you had warts all over all of your fingers and you were afraid that kids would notice and then no one would want to be your friend. (Okay, that was me.) Maybe you just wanted to sit in the grass and talk with your friends without being chased by Richard who was trying to kiss all the girls. (Also my experience - those warts came in handy to scare him away after all.)

I want Emma to have all of that without hobbling around in pain. That's all I want.

Enbrel is my security blanket. I really don't mind stabbing my kid in the arm once a week to give her a shot. That's a freaking piece of cake compared to watching her limp every morning when she gets out of bed.

So, even though she is fine, fabulous, and so so healthy right now, and we aren't even off of the medication yet, my mind goes down the road and deep down inside, I worry.

Wednesday, March 23, 2016

My One Regret

I really have very few regrets in life. I'm happy where I am and quite content with the choices I've made during my revolutions around the sun. Life is good. 

However, there is one thing I wish I had done differently. 

Can you guess what it is?
(I bet not.)

I wish I had listened to my parents when they told me not to slouch. 

I'm being serious, people. I have always been a Type-A, check off the list, obedient person. I obeyed my parents rules. I listened to their advice and let them shape my personality in hundreds of ways. WHY DIDN'T I LISTEN when they told me to sit up straight?!?!

My dad used to threaten to strap a board to my back. I would have hated him so much if he had done so, but the older me thinks maybe he should have gone ahead and done it anyway. 

One's spine is one's powerhouse. Our backbones quite literally keeps us standing and are home to our spinal cords, the highways of our nervous systems. The spine is made of 33 vertebrae linked together in a flexible chain, perfected over millions of years of evolution. It is a complex, beautiful piece of art.

The human spine naturally has a lovely S-shaped curve when viewed from the side. Unless you're a slouch. Then your spine, or more specifically... my spine, is shaped more like a C. All of that slouchy pressure puts undue stress on the lumbar region of my spine. As a result of 30 or so years of that pressure, I have a lot of pain in my low back. In the Winter of 2014, at the tender age of 32, my doctor told me I have chronic back pain, a slightly compressed disc, and early signs of arthritis. I also experience this really special tension and discomfort in my butt muscles called piriformis syndrome. And let's not talk about my shoulders and their constant tightness. 

With exercise and attempts to improve my posture, things have gotten better for me. Old habits die hard though. I'm still a slouch and I still regret it. 

Don't feel sorry for me. 
Just sit up straight.

Wednesday, February 10, 2016

Arthritis and The Needs of Humankind

I've seen variety of memes on the Internet that have a picture of a cute kid and the words: "We need a cure!"
It may be referencing cancer, diabetes, or migraines. I've used that same phrase about arthritis. When amazing people are suffering from awful diseases, it seems pretty obvious that they deserve better. They deserve to be well, and they need a cure. 

But you know what, I'm over that way of thinking. Sure, I'd like a cure for my autoimmune thyroid disorder, but I don't deserve one. I'd love a cure for my girl's autoimmune arthritis, but I don't expect one. I don't think she is entitled to a cure just because she happens to be the most incredible, most beautiful, and bravest daughter I ever had. 

I'm not holding out hope for a cure. It's not realistic, and believing in fairy tales is not what I need. Do you know what I really do need? What I think all people need, maybe even more than hope for cures?
 Community. Support. Love. 

Since Emma's diagnosis of Juvenile Arthritis, my family has participated in a yearly arthritis walk put on by the Arthritis Foundation. The walk itself is a big fundraising event, but raising money has never been my priority. My goal is always to have a HUGE team of friends and family walking together. I need people there to show support for my daughter's struggle and to raise awareness of JA. Last year, a fundraiser fell into my lap and I embraced it because the money we earned helped fund programs, camps, and support for a community of arthritis sufferers. It is through the Arthritis Foundation that I have found my community of fellow JA Moms. The support of these women has filled a need in my life, so when I do raise money, it is with that purpose in mind. 

A don't raise money for a cure.  I don't expect cures for any autoimmune diseases in Emma's lifetime. I expect that she will live her entire life with this disease. I suspect medications will improve, as they have already over the years, and she will likely experience many of them. She will have good days and bad days, and she will be braver and stronger than me for the trials that she will have to face. 

Rather than focus on the hope of a cure that may never come, I focus on what I know she can have, what I know she needs: community, support, and love. These will serve as sources of strength to help her through her hard days. 

Hoping for a better future is important, so hope for a cure if you want. For me, recognizing the good that we can do in each other's lives now, today, is the most effective way of making a brighter future for all of us. 

Want to build up my community and share in some support and love? Plan to walk with us, for free, on Saturday, May 14th at 10am in Livermore. Go to Emma's page here: TEAM EMMA & MADELYN, then click the button that says "Join My Team."