The days are flying by somehow as we continue to prepare for our trip to Washington D.C.! We are so excited! I can't wait to meet so many of my JA "family" from Facebook! There are so many people that I am anxious to meet! There are several that I wish could be there and won't be. :( Maybe another time I'll be able to meet people like KW and SBH! The conference should prove to be wonderful experience for us all. Not only do we have 4 days of the conference to look forward to, but all of the museums, the National Zoo, and meeting people outside of the conference like LPM! People that haven't connected to anyone via social media such as Facebook probably wouldn't understand, but in situations like mine, these people can become closer than your family, and certainly more understanding in many cases. (I am blessed to have a very understanding family, but many others don't.) These are people that I hear from daily. I worry if things are quiet on the other end for a day or two. I can't wait!
We are also anxiously awaiting Emily's infusion. Let me just say right now what a dork I am. I tell ya', I have spent a very large amount of time over the past few years researching Em's various conditions. I can tell you very specific things about her diseases, certain antibodies, what they mean, and even in some cases how they use them to test. However, sometimes things that I really know just don't become obvious to me when they apply in our situation. My husband pointed out something to me the other day that was a really big "Oh, DUH!" to me.
Every month for the past six or so months, the week before her infusion Emily gets "sick". Every month we take her to our pedi, and every month she has been put on antibiotics. Oh, for sure she has had a sinus infection or two in there. Normally she would have her infusion this Friday. So, it really shouldn't have surprised me that Tuesday she had a fever. I'm not really used to her having fevers. She was on Enbrel for 2 & 1/2 years without ever having a fever, including when she had H1N1. Fever to me has still had the "sick" stigma attached to it. While on the one hand I know that many RA patients have fevers when they flare, this has never been a trademark for Emily, so I never even considered it. Until my hubby pointed it out. Wow, how did I miss that one??? She's flaring big time right now. Her elbows are better but her knees are giving her a very hard time. She's trying not to walk. The fever lasted one day; it's gone now, but she's still hurting. One more thing to bring up at her next appointment. And I was so worried about her being sick all the time.
This week has been pretty special for me for little reasons. I don't post my religious views very often, as I understand that not everyone believe that Jesus Christ is our savior. I try to make this blog for everyone to learn from, but I have to say this. I don't believe in coincidences, and I feel I need to post how I feel right now.
If you asked me back in 2007 if I thought that I was a good person, I'd have told you that I didn't know how to answer that. I wasn't a bad person, but I didn't particularly like myself. I was very quick to point out my flaws, but not so much with my good points. I know that I have said before that Emily's diagnosis changed our family significantly. Yes, it's very sad, and yes, sometimes I still cry for her, & I seem to cry when I try to tell people what's wrong with her. Overall, I'm actually very blessed, very happy, and very much at peace. Learning to let go, let God has helped a lot. Knowing that it's out of my hands and up to God helps. I believe that He has a plan for us. I see evidence of that daily. It's really cool to know that I'm being used. I know that, no matter what, He has a purpose for me. I know that I help people. On the flip side, I know that many, many people have helped me. I feel that my contributions are small, but important nonetheless. I go out of my way now to find ways to help, something that I never thought about before.
I had two conversations this week that made an impact. Both were at work. I had someone tell me that, thanks to a conversation that we had, she found out that her daughter has Graves disease and thyroid cancer. She's ridiculously young. I think she said 11? I had told her get a second opinion if your gut tells you your doc is wrong. It's easier to get a second opinion and find out you're wrong than it is to find out when things go really bad. Her pediatrician insisted that there was nothing wrong with her. It was her second opinion doc that found out why her daughter was acting so tired and different.
The other happened after I brought something in to help someone. I just love this lady anyway, but she has fibromyalgia and she's having a very hard week. I told her that I would remember to bring something in that I knew would help. I see when she's having a hard time. I'm in tune. She took me aside later to tell me that she could see how God was working through me, and He gave me a good heart to help people. That meant so much coming from this person because she is someone that I look up to a lot. She is one of two people that I really feel a spiritual presence around all of the time. She & Lita seem to radiate a peace and love that I am drawn to. These are the types of people that make me want to be a better person, and they are both so loving, so accepting. I feel this is how we were all supposed to be. Anyway, the whole conversation was just so unexpected and deep. I love having deep conversations with her because she gets on a roll and starts spouting scripture. I learn so much when we really talk. No matter what in life, I know that I have a lot of love. That is all that I could ever possibly ask for or want. Love is so much better than anything material that I could think of. "Love is not proud, love does not boast. Love, after all, matters the most."
My name is Jenna and I came across your site. Emily is such an Earthly Angel, Smilen Champ and an inspirational hero. She is a Courageous, strong and determined fighter. She is a Miracle. I was born with a rare life threatening bone disease that effects all my joints. I also have Fibromyalgia, Osteo Arthritis in my hands and arms, and Burcitis, and Tendintis, in my ankle and hip. I was just diagnosed with Arthritis in my left leg, but don't know what type. I turn purple when I am cold, and when I walk my left leg gets all swallen and turn purple. Which is very painful. Emily is very lucky to have you as her mom. That lady was right, you are a caring, helpful, loving and kind person.
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