My Teen is an Old Lady Who Turns Purple (& her little brother has arthritis, too): Where does the time go?

The past two or three weeks have just blown by. There are so many things that I have been wanting to write about, but I just haven't had time. Here I sit with my face feeling all sinus-pressurey, knowing that I won't be able to go to sleep, so now seems like a good time :)

We've had our usual ups & downs. I decided that we desperately needed something fun to do, so we took a Sunday & Monday over the kids spring break to go to the Rennaissance Festival and Busch Gardens. The kids had a blast, & I did, too. It was harder for Kevin. He's still trying to get back to himself, but he trooped along trying to make the best of it. My son was so excited for BG! We used to always have yearly passes, but we hadn't gone in a couple of years. It's amazing how much has changed, and how big my little people have gotten. They were interested in a whole different way now. It was a truly wonderful couple of days. It was eye opening in some ways. There were several kids around her age that just stared at her like she was an alien. Some parents, too. We tried to shift the focus off of her, but I think they are drawn in by her chair. I don't think that she noticed, & we weren't going to point it out. Then, on her first day back to school she came home angry. Two little kids were pointing and laughing at her. My sweet little girl went right up to them and yelled at them. I am so proud of her. I think that was a first.

Emily started to cough last week. I have gotten to this point where I really just dread taking her to the doctors. We are just so over it. We always seem to have someone get sick whenever we have plans, or at every other bad time. I often think how nice it would be to have just one month without a doctor visit. Wouldn't that be lovely? We have a fantastic Pediatric Urgent Care center in our area, so I took her there. They're open the odd hours so you can go there when your pedi is closed. We went late Friday night. They have their own lab, x-ray machines, and pretty much everything that an ER would have, so it seemed like the best option. The only downfall is that they only accept one insurance per patient- not 2. And they don't take Medicaid. Our primary is United so I figured I'd just eat our copays because we were already there, and she felt comfortable. We were there for quite some time, but mostly because the doctor doesn't deal often with conditions like Emily's. (When you have something that only affects about 3 kids out of a million you find that many doctors aren't schooled on it.) I was thrilled that he took the time to educate himself before he came in to see her. For once it was only her asthma acting up :) The doc put her back to 30MGs of Prednisone for the week, up from her current 9MGs. We took her back to our regular pedi a few days later. She was clear, no asthma detected. Somehow, I wasn't really surprised when the nothing turned into a sinus infection. Our pedi actually told us to keep her inside until May. I'm not really sure how practical that is, but we will try. We go back to them on Monday, and then for her Remicade on Tuesday. I plan on asking her pedi if it's ok to take her camping. I have been dying to go; camping is like a vacation for me. I need to be in the woods, need to bond with nature for a while. We put off so many things already.

While Emily is recovering slowly from her sinus infection, we are counting down the days until her next infusion. She's only been on Remicade since October. We're still trying to find the right dosage for her. Normally we would have gone this week for her infusions, but the school & hospital is on spring break. (Crazy, eh?) That means waiting an extra week for her arthritis meds. Poor little bean is not having a good week. First it was her wrist, then her knee. Those seem to be better by now, but now it's her back. She was crying trying to get into her bed tonight. :( Her back is hurting her so badly right now. I thought that it was the muscle that she pulled at PT a few weeks ago, but Kevin is brilliant with massaging and feeling muscle abnormalities and he thinks it's the arthritis. (When it comes to muscles, I couldn't feel my way out of a paper bag...) I'm hoping that she can get through the next few days with minimal pain. Tuesday we'll have a very long drive. I hope she can handle it. I bought her "Tangled" since we all loved it so much. Maybe I can play that for her on the way up to the hospital to take her mind off of the pain.

Speaking of pain, the bills from these types of hospital/ doctor's visits are crazy!!! People may have thought that I was crazy when I said that I got social security for her, but look below at this insurance statement. This is what I get from our primary, before it goes off to Medicaid. (Thank you, Lord for Medicaid!!!) How can anyone afford copays like that??? I surely could not afford to pay $1100 a month just for treatments. Granted, it's better than $10,000 but, really??? Nope, she doesn't have anything serious wrong with her. We just like to waste money. Yup. I've heard that IVIg's cost something like $36,000 each. How can anyone afford these things? This is why I support the Arthritis Foundation's quest for a cure, and funding for NIH. (National Institute of Health) There has to be some better way to get people their medicines than IV only. There has to be other treatment options waiting in the wings for when these meds no longer work, but you've run out of options. There has to be a cure somewhere, some way. We just need the right people working to find it. It isn't fair for our kids to suffer so greatly, or for adults. It's so sad when your child tells you that they are looking forward to their infusion. To me, that is just wrong. We need to support better research, but we also need to raise awareness that many diseases under the arthritis umbrella are autoimmune, not caused by old age. It's just as unfair for someone to tell these victims that they can't be hurting because we can't "see" their pain.