Sunday, August 4, 2013

Keeping It In The Family

"Plbbb to you, Enbrel!"
*Plbbb is how I spell the sound of a raspberry.
We restarted Emma's Enbrel injections last week.

The anticipation of the shot stresses her out more than the actual injection. She puts up resistance to sitting down and holding still, but eventually, she lets me poke her while she waves her magic wand and chants, "It doesn't hurt. It doesn't hurt." Both last week and this week she informed me, afterwards, that it actually did not hurt. This proves that, not only is she tough as nails, she has sufficient super powers to make a toy wand perform magic.

A couple of weeks ago Emma was having good days and bad days. Some mornings she hobbled to my room after waking. Others, she woke up screaming for me to come carry her because she couldn't straighten her knee at all. Sometimes she just crawled around for the first fifteen minutes of her day. Even on good mornings there was a limp and an inability to put all of her weight on that stiff, swollen knee. Last weekend she had two very good days in a row. Then we started her Enbrel and every morning of the past week has been beautiful. There has been no screaming, no crawling, and very little swelling or stiffness.

One injection. One tiny, little, 0.5mLs of Enbrel and the kid is almost back to normal. I love this stuff. I also really hate the stuff. *Sigh* I guess this is just our life now.

That light blue range on the left is normal. That 12.35 was me.
I haven't been feeling well since the weekend of the JA Conference. I'm having little dizzy moments, am beyond exhausted some days, occasionally have a swollen feeling in my throat, and experience shortness of breath and a tightness in my chest at random times. I went to my doctor and had some blood work done. The results showed a very elevated TSH level. (That's Thyroid stimulating hormone - it comes from my brain and tells my thyroid to produce hormones.) That means my brain was essentially shouting at my thyroid to make more of it's hormone, called T4. Two days later my doctor ordered more tests. This time my TSH was at the high end of normal and my T4 was at the low end of normal. Well! That was a quick bounce in hormone levels! The really not so super thing is that I have tons of antibodies against my thyroid.

Antibodies are what our immune systems make to recognize foreign bad guys in our bodies, like bacteria or viruses, so that our good, fighting cells knows what to attack. My body has made lots of antibodies against something in my thyroid that is needed to make thyroid hormone. This means my own immune system is attacking my thyroid and preventing the proper production of T4. Do you understand what I'm saying? I'm saying my problem is AUTOIMMUNE. Emma's arthritis is an autoimmune disease. It's like we're related or something.

My doctor thinks I have acute Hashimoto's Disease, an autoimmune disease of the thyroid that results in hypothyroidism. He referred me to an endocrinologist, who I get to meet tomorrow. I'm hoping this specialist answers all my questions, digs a little deeper with me, and helps me get everything figured out so I can go back to feeling normal. I'll keep you posted as I learn more.

I want to say a super huge THANK YOU to my friends and my amazing Mommy who have given me extra love and support the past couple of weeks. Having a little kid with a chronic illness who I have to stab on a weekly basis is emotionally difficult. Feeling like crap physically on top of said emotional strain gets to be really draining. I'm glad I'm surrounded by caring people.


  1. Oh Sarah- Im so sorry- like you dont already have enough on your plate..

  2. Hope things go well at the specialist. You know we aren't too far away if you ever need a break or just a breather. Emma and Liam can come play.