Wednesday, June 15, 2011

"Yes, I have arthritis and YES, I know I'm too young...."

If you know Jordan you know she's a little feisty when she's unhappy. Monday was one of those days. She had her infusion on her first day of summer vacation and we had to leave the house at 7. Sunday night all 4 of us fell asleep downstairs. Rick in the chair, Matty on the love seat, me on the couch and J on the floor. Rick said he woke up around 1:30 but decided to let us all sleep. Matty woke up at 4 and asked to go to bed so Rick took him up. Jordan and I woke up around 5. I got in the shower, we got ready and were out the door a little after 7. We stopped to get a donut and were on our way.

We got to the clinic around 8:30. We check in, go back to find the clinic is FULL of kids and only 1 RN. I should have known it was going to be a rough day. We find a chair, the receptionist calls J back to get her vitals then we wait. And wait. And wait. 2 other nurses show up to help out. One comes over to take a look at Jordan's veins. Jordan has awesome veins, like everything else, she gets that from me ;-) Jordan ALWAYS does the IV in her arm and she prefers it in her right arm. I just got her to try her left arm again a few months ago. She hates her hands for some reason. The nurse convinces her to try her right hand so we can rotate veins so there isn't any scaring. J agrees. I'm holding J and I can feel her heart beating really fast and she started to panic a little. I got her to calm down and the nurse does the poke. She thought she got it in but there was no blood return so she's moving it around a little and the whole time J keeps saying, "It hurts, It HURTS!" The nurse stops for a minute then tries again. Still nothing. Jordan is getting pale so the nurse gives up and tries her left arm. Again, she couldn't get it. By now J is done. The nurse is convinced she can get it so she's moving it around, and again J is saying it hurts. I finally say enough, we need to give her a break. We've never had trouble getting a vein and I was so afraid J was going to lose it. Another nurse comes to try her right arm and she gets it pretty easily. IV is started around 11, 1 ½ hours after we got there. Remicade is started around 11:45. J is not happy. We see Dr. G and go over what's been going on. The swelling in her knees, the pain around her elbows, her PT and of course how she hates MTX. J has been begging to switch to another med for a while now. One of our options that both Dr. G and Dr. T, J's ophthalmologist, agreed on is CellCept. MTX works better with the biologic drugs, like Remicade, but CellCept is used by people who can't take or don't tolerate MTX. Jordan got her wish. We are switching to CellCept. We also talked about some changes that I've noticed in Jordan that make me think she's starting puberty. Dr. G agreed so she ordered bone age x-rays of her hands. If her bone age is really off then she'll need to see an endocrinologist. 

We finish up with Dr. G, decided to keep her at infusions every 6 weeks and see how she does with the CellCept. We go back to the infusion area and J falls asleep. All I keep thinking is, she gets this from me. All of it comes from me.Thankfully, we caught her arthritis early and we are able to treat her with the meds we have. She has some pain and bad days but she isn't miserable like I was as a child. She has an answer and awesome doctors. 

Around 2 we're done with the IV flush and are able to leave. At first I was going to go straight home because we're both tired, it's been a long day and we're starving. About half way home I asked her if she felt OK enough to stop at the pharmacy and do the x-rays because we were already out, we didn't have Matthew and I needed to get my meds because I was out of a few. She agreed to just get it done so she didn't need to worry about it later this week. Plus she wants off MTX so she wanted to start CellCept ASAP.  

We check in at the pharmacy, go do the x-rays then go back to get the meds. The pharmacist goes over the CellCept, tells me it lowers her immune system, blah, blah, blah then asks me why she needs it. I told her she has JA. She looks at me and says, "Well, did they dx it by blood work?" I said yes, she has arthritis she's had it since she was 2. Jordan, a little snotty, pops up with, "Yes, I have arthritis and YES I know I'm too young. I just spent the day at the hospital getting a Remicade infusion. I was poked 3 times! I used to do shots at home before the Remicade. It's not fun and I don't like it. And my Mom has it too." The pharmacist just looked at me. She said she was sorry and she didn't know kids could get arthritis. Another person educated that kids can and do get arthritis. Normally Jordan would have been nicer about how she said it but she was spent. She had had enough and just wanted to go home.

We finally made it home. She took her first dose of CellCept on Tuesday morning. No stomach issues at all so far. I thought for sure she'd freak out about the pill but she's happy to be on something else after 5 years. I hope this works as well as the MTX did. 

 

6 comments:

deb aka murphthesurf said...

What a brave young lady! A true RA hero. It is shocking that a pharmacist wouldn't know about jra. I mean, what on earth is being taught in these medical schools!

Jeannine Predmore said...

Stacey, Jordan also get her strength, will, and determination from you! I am praying the CellCept works for her...

Jazzcat said...

What a girl !! So couragous!

Lauren Elyse said...

Your daughter is a powerful force in the world and is a true hero to me. I'm 26. I get told I'm too young. I can't imagine how it feels for Jordan! Sending my love to all of you!

Yeh Family said...

Love that brave girl of yours Stacey!!!

Jamie said...

Jordan is a brave and determined young lady. I am 30 and some people are shocked when I tell them I have arthritis. I was diagnosed at 28. Some people have actually asked me if I will ever get 100 percent better. When I tell them that I will always have autoimmune arthritis for the rest of my life (unless there is a cure found) they are stunned. I have also heard from a few people about how their grandparents have or had arthritis. I cannot imagine what it is like to be a child with autoimmune arthritis.