Thursday, June 23, 2011

How do we fix ignorance?

I used to be one of those people who thought only adults, OLD adults got arthritis. I knew of 1 person with RA growing up and in my 7 or 8 year mind 30+ was old.

Fast forward to the late '80's when my hip pain began. I was 13 when it started and 14 when I had a bone scan. Before the bone scan I had a ton of x-rays and blood tests. I was sick a lot. No one knew why. One time rheumatoid arthritis was mention but my doc at the time insisted if I had RA it would show up on labs. Well, we know different now. I'm seronegative and not a crazy lady looking for pain meds ;-)

I came across this article on burbank.com about juvenile arthritis. Go read the article and think about what it says. Did you follow the links that are in the article? No? Well I'll provide them for you. The first link they provide is link about osteoarthritis, OA. Remember, this is supposed to be an article about juvenile arthritis which is autoimmune. Did you catch that the link brought you to a site for a medication used to treat osteoarthritis? The second link brings you to a CDC page which is again about OA. I thought the article on burbank.com was about JA?? Everything they're linking to is about osteoarthritis which a child CANNOT have. The arthritis CHILDREN have is AUTOIMMUNE. The final link in the article states, " .... Also try contacting the caring people of Limbrel to further assist you." Now, do you think it's a good idea to contact the makers of a drug that is specifically for OA about your newly diagnosed JA child? Me neither.

The article goes on to say,  

"Your child does not need to think that their juvenile arthritis is the end of the world. They can still have a full life where they enjoy running, bouncing, climbing and playing. Your child will love being able to lead a happy and full life without suffering from the pain of arthritis. They will be able to enjoy all of the things that are great about being a child and not have to worry about their juvenile arthritis affecting their life. They will thrive and be happy and healthy."

GOD, how I wish that was true. The reality is that Jordan thinks about her arthritis daily. Several times a day. Every morning and every night when she takes her medicine. Every month when she is sitting at the infusion center hooked up to Remicade she is thinking about her arthritis. When we're outside with sidewalk chalk, she often writes "I hate JRA." Even when we dyed eggs this year arthritis was on her mind.



She grins through the pain but I see it in her eyes. I see her swollen knees after a day of running around with her friends. I can't even begin to count how many shots she's had in the last 5 years. She's been on more medication then the years she's been alive. Who the hell do these people think they are? What world are they living in thinking JA is a walk in the park?? Obviously the writers of this "article" and burbank.com don't know ANYTHING about life with juvenile arthritis.

Jordan does have a fairly normal life and for the most part she is happy. She is not healthy. She lives with the risk of the typical cold killing her. The medications she takes can give her cancer. It amazes me that "medical information" can be published with no research done to prove or disprove the facts stated in an article like this. This is the stuff we need to find and fix. It's no wonder people think our kids are really fine.

It's on the net so it must be true.

Thursday, June 16, 2011

To the jackass who hit the Vancouver Firefighter-- This is what you do when your team loses?



Normally, I keep my mouth shut about stuff like this. It's always classless no matter who is doing it. Living in LA I've seen enough rioting and looting over stupid stuff. But that video really pisses me off. Because you got your ASS drunk and your team lost, you felt it necessary to go out and destroy property like everyone else. Not only did you act like F ^&*%$# MORON, YOU HIT A FIREFIGHTER! Someone who risks their own life to save your sorry butt. I don't know how he didn't hit you back. I'm pretty sure if you hit my husband, your ass would have been down and he'd probably be reprimanded if not fired. I hope to God your found and charged with assault.

You don't disrespect the people you call to save you, when you need help. 

The Jeffrey Gottfurcht Children's Arthritis Foundation

Do you know who Jeffrey Gottfurcht is? No? Well you should. Especially if you have RA, JRA or know someone who does. Jeff is the first person with RA to summit Mt. Everest. For a normal healthy person this is quite an accomplishment but for those of us who live with RA, some days just walking to our car is something that is barley manageable. Climbing to the top of the world is completely out of the question.


Well, Jeff did it. He did it for a few reasons. One of course is because it was a dream of his and he didn’t let RA take that away. Another is to raise awareness about RA. Not just RA but JUVENILE RA. Yes, kids get this too but if you know me, you already know that because Jordan was diagnosed when she was a toddler.


Jeff has a foundation called The Jeffrey Gottfurcht Children’sArthritis Foundation. What this foundation does is simply amazing. JGCAF grants “dreams” for kids with JRA. Jordan is one of those kids who had a dream granted. Back in February of this year JGCAF sent our family to the American Girl Store in Hollywood for the day. Jordan got to pick out 3 dolls, some accessories, we had lunch, and she got a gift bag full of stuff all compliments of JGCAF. 






Jeff has fulfilled the dreams of several kids like Jordan. Their dreams range from iPads, computers, TVs, a new guitar and in the next few weeks for the first time the foundation will be sending a family to Disney World for a week. The things Jeff and the other members of JGCAF are doing for JA kids is a blessing to those of us who are lucky enough to have a dream granted. Jordan has wanted an American Girl doll for a long time. If you know anything about these dolls you know they are not cheap. Because of Jordan and I are sick we spend a lot on medical. Rick is our only income and just so you know, EMTs don’t make a lot of money.  We would never be able to afford to give Jordan a day like the JGCAF did. We couldn’t even afford to sign up Matthew for t-ball last spring and I highly doubt we’ll be able to this fall. But that’s a whole other issue we face.


My point for writing this-- Jeff is looking to raise $29,000 in 29 days in honor of his 29,000 foot climb to the top of Mt. Everest.  
Via Jeff Gottfurcht on FaceBook-- Our Foundation is determined to raise $29,000 in 29 days to continue to fulfill the dreams of kids fighting JRA. $29,000 for the height of Mt. Everest. Please help us, by not only donating, but by continuing to spread the word about what we do for these kids. Even $1 dollar helps us toward our goal. You have the power to help us make these dreams come true.
I know I have asked for a lot the last few months with the walk and all but PLEASE consider donating to this cause. Obviously, this is very close to our hearts. You can go to the site and watch videos of kids who have had dreams granted and see their face light up. I will never forget the look on Jordan’s face when she realized she could pretty much pick anything in the American Girl Store. Our kids need and deserve this. Our kids don’t look sick so their disease is pretty much unknown in the public. The JGCAF is changing that.  

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. 

 

Saturday, June 4, 2011

1 in 1,000

"It is estimated that one child in every 1,000 will develop a rheumatic disease. Nearly 300,000 American children suffer from juvenile idiopathic arthritis, which begins before patients reach the age of 16 and may involve chronic inflammation of one or many joints. JIA often persists into adulthood and can cause long-term co-existing conditions and disability."   --American College of Rheumatology

1 in 1000 kids. That's a lot of kid but unless you know someone with a child who has JA you probably never new that kids as young as 6 months old could get arthritis. Some children are born with it.

This past April marks 6 years since Jordan's official diagnosis. We were told that she would "grow out of it" and live a normal life in a year or 2. I believed her doctor. 6 months after we were told she had JA the eye inflammation started. I remember sitting there thinking her eye exam was taking a lot longer then it usually did. Dr. McH looked at me and said, "I'm sorry." I knew at that point that we were in a fight.

In October 2004 we had a little limp, December 2004 a softball sized knee on a tiny toddler, February 2005 surgery on her knee, April 2005 a JA diagnosis and in October 2005 uveitis in both eyes. Looking back I can see there was something wrong with J as a baby. She never slept well. Still doesn't if she's flaring. Jordan did just about everything sooner then a typical baby. Except crawling and walking. Jordan scooted on her back or rolled. When she did finally start walking she drug her right leg. She was a clumsy toddler. Now it all makes sense.

Now I know that most kids do not out grow juvenile arthritis. Some do go into medicated remission but as soon as those medications are lowered or stopped, the arthritis becomes active again. Some kids are put on medication after medication just to find something that helps them. There isn't one drug that works for everyone. Some kids don't tolerate one well or they might be allergic. Then there are kids like Jordan who have been on more meds then the number of years she's been alive. Her body does really well on something for a while then it starts to reject the med. It stops working. Her eyes are usually the first to flare. Then the right knee and from there it goes wild. This is where we are now.

Jordan came home on Monday night after spending the weekend with Rick's Mom with puffy knees. About a month ago at her routine eye check her eyes had some inflammation. At her last Remicade infusion her inflammation levels were high. As soon as I saw her knees I started her back on naproxen twice a day. I emailed Dr. G to let her know what was going on and she agreed Jordan was starting to flare and that we have 3 options of what we can do next. She feels that J isn't able to go 6 weeks between infusions so we will probably go back to Remicade every 4 weeks, option 1. 2, we can up her dose of methotrexate (MTX). If you know J at all you know that this really isn't an option considering the dose she's on makes her sick even with zofran before and after her shot. Option 3, we can stop the MTX completely and put her on another immune suppressing drug called CellCept. This one is not a chemotherapy med but it's used in organ transplant patients to stop them from rejecting an organ. It has several of the same side effects as MTX so I'm worried that she won't do well with this one either.

These are the types of decisions thousands and thousands of families like ours need to make daily. My daughter has a chronic disease that causes her pain. If we do nothing she goes blind and won't be able to run or play like the other kids. If we give her these drugs we risk her developing cancer. We've already had the cancer scare twice.
That's a little update on my 1 in 1,000.