Tuesday, March 29, 2011

Jordan's Pink Angels! 2011 Arthritis Walk Info





If you would like to WALK WITH US Sunday, June 5 at Six Flags Magic Mountain CLICK HERE

Click on the link on our team page that says "JOIN OUR TEAM" and select the MAGIC MOUNTAIN WALK

If you have any questions or you'd like a photo of Jordan or a little of her history to put up on your personal donation page, please send Rick or myself a message on FaceBook and we'll get back to you.

If you would like to DONATE to **Jordan** CLICK HERE

If you would like to DONATE to **Matthew** CLICK HERE


**** Please consider donating in Matthew's name. He really wants to support Jordan and do what he can for our team. He is an awesome brother who ALWAYS thinks of his sister. He feels as if he's let her down when he is unable to bring in donations. He's a sensitive boy :)



Monday, March 28, 2011

What do you take for granted?

I bet most people don't think twice about showering. It's something we all have to do and for most people it's a very simple task. You get in, wash hair, soap up, rinse off, shave and get out. Easy right? Not for me.

Most days I do OK. But there are days when it's almost impossible just to turn the water on. And then there is trying to get in to the shower without falling. I'm sure that's amusing to watch. I avoid showering when I'm flaring because it is so hard to do. The energy that it takes to shower is something a lot of people take for granted. I know I did. I can't squeeze the shampoo bottle. I can't balance on one leg to shave my legs anymore. It's too hard for me to get up if I sit. Not to mention trying to hold onto a slippery razor with hands what don't want to move. I know most people would say to wait until Rick can help me but sometimes that isn't an option.

We have a bath seat. We didn't buy it for me but I'm sure the next time I'm in a horrible flare and can't stand to shower I will use it.

How about cutting your food? Do you realize how hard that can be? My grip isn't what it used to be when I'm not flaring so when I am I have even less strength! Cutting meat is a challenge. If Rick is home and I can't do it, he will. Along with the kids.

There are other things too. Opening a door or turning a key. Walking to the corner or down the street. Opening a can. Riding a bike. Typing/texting. DRIVING. Tying shoes. Wearing certain shoes! I cannot wear heels anymore-- it hurts too bad. And I can't wear my wedding rings most days. If I do my hands will swell... never fails. It's like something is against me.

Have you ever had to hold back tears when your child runs up to you after school and gives you the biggest, tightest hug? On really bad days the slightest touch from the kids me can put me in tears. There are times when it hurts for them to sit by me or hold my hand but I grin and bear it.

Everything I have mentioned is stuff that I struggle with. Some things daily and others only when I'm in a bad flare. But everything listed is something I never thought twice about until I couldn't do them. I cleaned and vacuumed my car out this afternoon. Something people do all the time. It totally wiped me out. I am so exhausted that I couldn't make dinner or do dishes. My shower will have to wait until tomorrow. Again.

Wednesday, March 23, 2011

2011 Arthritis Walk- Jordan's PINK Angels

I put this together real fast the other night. This by no means comes close everything Jordan has been through with JRA. Just trying to get people to see why we need a cure. Not just for Jordan but for the other 300,000 kids just like her.

Jordan's Pink Angels

J's latest & other ramblings

Jordan had an infusion on Monday and it went really well. Daddy had to take her because I'm still unable to sit, lay or lean on anything for very long. Because of the location of the incision on my back, it's taking me a lot longer to heal then I expected.

So, Rick took J. At first she was worried that he wouldn't know what to do but I assured her it would be fine. She could call me and we wrote out things we needed to ask Dr. G. One of the big questions for J was why she was "seeing shaking." I have no idea what that means exactly but she's been complaining for a few months that she "sees shaking" once in a while and it really scares her. Turns out it's being caused by fluid in her ears. She has vertigo. She HATES it but now she knows she's OK and why it's happening. Other then that, her appointment was pretty good. She has no swelling in any joints and her labs are looking really good. She has an eye appointment in April so we'll see if doing the Remicade every 6 weeks is keeping the uveitis away. And on a little side note, she's going to be 9 a week from Friday. I can't believe it.


I have stopped taking prednisone completely. It wasn't easy but the fact that I gained 20lbs in the 18 months I was taking it made me very unhappy. In Sept/Oct '09 I was finally at my pre Jordan weight. I was miserable and I'm sure being on the high dose of methotrexate is what caused me to lose my baby weight but I was happy with the way I looked. Now, not so much. The timing of stopping the pred kinda sucked seeing how I had to go off all RA meds so I could have the mass on my back removed but it needed to be done. I was in a lot of pain and had to rely on Rick to do just about everything. I was back to taking pain meds every 5 hours. I started my Enbrel again on Monday and I can already see the swelling in my hand improve. It still hurts and I'm slow to get moving in the morning but I know in the next few weeks I'll feel like I did a month ago. I hope to start losing this weight when that happens.

My Matty is doing really good. He is officially 6 and a HALF today. I remember when that "half" was so important to me too. Now, I often forget how old I am to begin with. He can read to me and is currently reading "How to Train Your Dragon" on his own. I help him with the words he doesn't know or can't sound out but he's really reading it. When he started school this year his teacher was a little worried about him but he's caught up. I knew he would ;)

That about covers what's been going on here. Kids are great, Rick loves his job still but hates the drive and the $300 a month we're spending in gas to get him there. And just I'm here.

Thursday, March 10, 2011

Historic day for Lupus patients

Yesterday, March 9, 2011, the FDA approved Benlysta. This is the first drug FDA approved to treat lupus since 1955. The last approved drug was Plaquenil, a drug used to treat or prevent malaria.

This is HUGE for those with lupus. Until now we have had to "borrow" meds used to treat other diseases. Chemotherapy drugs, steroids, NSAIDs, ect. work for some people but there are several who need something specifically for lupus. No, not every person with lupus will respond to Benlysta but this gives us something else to try. It gives us hope that someday there will be another med that will help even more people with lupus. Hope that maybe one day there will be a cure.

I cried when I read the FDA press release and I know I'm not the only one. I was sitting in my car waiting for J to get out of school. Matthew looked at me and asked what was wrong. He was confused when I told him nothing was wrong, I was crying because there was a new medicine for lupus. He hugged me and shouted "LET'S GO TO THE DOCTOR AND GET IT!" I told him it wasn't that easy and that right now I'm doing pretty good with the meds I'm on but this new med gives me another option if I get sicker. J gets in the car and Matthew tells her the news. She says, "Why can't they just find a cure???" She then goes on a rant (again) about us not having a cure for arthritis and lupus. I explained to her that even though we don't have a cure this is still good. It means that there is research being done on these diseases. She doesn't care. She just wants us to stop taking the "icky" meds we take.

I'm happy. I just hope that there isn't another 55-56 years before another drug is approved to treat, or cure, lupus.

Sunday, March 6, 2011

What works for us

If you have a child with a chronic disease you of course will do anything to help them get better. Like most parents when J was diagnosed with JRA we had no idea what we were in for. Honestly, I don't even remember what I thought was wrong with her but I know arthritis never ever crossed my mind.

When Dr. S told me he was 99% sure it was JRA I did what most people would do.... I turned to the internet. I came across stories that broke my heart and others that gave me hope that a JRA diagnosis wasn't the end of the world like I had thought. I read that treatment was often naproxen and physical therapy for simple cases, like what we thought J had. The more severe the disease the stronger the meds. I never imagined my daughter would need long term treatment for arthritis.

Another JRA family came across a forum that is dedicated to only using what is known as Antibiotic Protocol, or AP, for several autoimmune diseases. If you do a search you will find several site that will explain in detail the treatment and results. Several people have had good results using AP. I read a few studies on AP when J was diagnosed but with as fast as her JRA was spreading, we didn't have time. She was in constant pain and the inflammation had reached her eyes. If we didn't do something quick she would have lost her vision at the age of 3.

Amy says just about everything I would about AP, "If it were me? Heck yeah I would try alternative therapies! But for my child? Is it really worth the risk if that therapy fails? Especially when you consider that her arthritis isn't only in her joints, it's in her eyes! Would you really, I mean really risk your child's eye sight just to try something that may or may not work? And before you say it, YES, I knooooow that the meds that we inject her with are dangerous. I know that, believe me I know and I hate it. But for us, when we look at everything and weigh it all out, the risks balanced with the proven success of these meds wins out hands down over anything else."

What is different about Amy and I is the fact that I DO have RA along with a few other autoimmune diseases. I have been on long term antibiotic therapy with no improvement in any of my symptoms or disease activity. My pain had got to the point where it was taking over my life. I couldn't do anything. I was not the mother or wife I needed to be. There was a 3 month period in 2008 where things were so bad my husband had to take medical leave so he could take care of me and the kids because I couldn't do it. There were days when I couldn't leave my bed. Last night Rick and I were talking and he was telling me things that happened during that time that I never knew about.

I know there are more stories like mine just like I know there are stories about AP working. I have lived with chronic pain and fatigue for most of my life. My mom says it goes all the way back to when I was about 18 months old. I've done physical therapy, been on countless meds for just about everything you can think of but the only thing that has helped me has been the TNF blocker, Enbrel. I am well aware of the risks associated with the med. (We had to decide what to do when J's arthritis running wild through her little body so I researched the hell out of biologics.) For me, my quality of life sucked. I couldn't go grocery shopping without using a scooter. I was missing Matthew's t-ball games and events at school with the kids. That was not what I wanted my kids to remember. I was severely depressed and beginning to think my kids would be better off without their sick mom. I don't think anyone knows how depressed I was.

These meds that so many people think are evil have saved my life. They've given Jordan a change to be a normal child who can run and play and SEE. I don't force my treatment plan on anyone and I don't talk about people who try something different in a negative way. If you ask me I will tell you what has worked for us and what has not. I know people who do not agree with our decision to put J on these meds but we did what we had to do to give her a shot at a normal childhood. Yes, she is different and always will be. But you know what?? Because of her arthritis she is the amazing person she is. How many almost 9 year olds do you know of that want to help other girls like herself? She offers advice to kids her age who are just diagnosed on meds, doctor visits and how to tell friends they have JRA. She writes about her experiences with arthritis because she wants people to know how it feels to be a kid with "an old persons disease."

So, you do what you have to do for yourself and your family, I'll keep doing what's best for mine.

Wednesday, March 2, 2011

I hate feeling helpless

Tonight the kids and I were watching Mystery Diagnosis. I record it just about every day and we watch when there is nothing on. The kids find it interesting and I often find myself thinking, I should have been on this show.

We were watching an episode about a teen age boy and Jordan would ask questions about what tests they were doing and if she had any of the same ones done. I'm sure she did but after all these years I don't remember. She goes back to watching then turns to me and basically yells, "WHY ARE THERE CURES FOR OTHER THINGS & NOT THIS?"

The look on her face said it all and she almost started crying. I had to hold my tears back. She's had enough. We've all had enough. Arthritis has made my baby grow up too fast. She's tired of taking these meds that make her sick, she's tired of being different. For the most part she has accepted that this is her life and she does really well dealing with it. But then there are times like this when it gets to be too much.

The episode we were watching ended with the boy being cured with an antibiotic. Some rare illness that only 1 in so many tens of million ever get and it's cured with an antibiotic. Here we are with close to 50 million people and 300,000 children living with a potentially deadly disease and we're no where close to finding a cure. I know the same can be said for diabetes or HIV and I'm not saying that arthritis is more important then those diseases. Why are there so many people working to find a cure and treatment for those diseases but not for arthritis?? Is it because it's "just arthritis?" Only old people get arthritis, right? Not the kind of arthritis that Jordan and I have. This can kill us. And I know people don't get how life altering arthritis is. They don't understand because it's not put out in the public eye like HIV or diabetes or cancer.

Everyone has something they fight for. Something that is close to their heart for whatever reason. This is my fight. I will do whatever I can to help find a cure for my daughter and the kids just like her. No one should feel the pain I felt tonight, it was like a thousand daggers in my heart.


"WHY ARE THERE CURES FOR OTHER THINGS & NOT THIS?"

"I don't know, baby." What else could I say?

Tuesday, March 1, 2011

How???

I would like to know how it is possible to feel so good, yet have labs come back so bad? It doesn't seem possible but it is.

Since Mid to late December I have felt really good. I'm tired, still have some pain and stiffness in the morning but for the most part I feel good. I had my lab work done 2 weeks ago for my appointment. I figured things would be the best they've been in years. WRONG!

I don't even know what is wrong. I still have swelling in my hands/wrists but it's not as bad as it's been so I assumed it was normal. It's not. So we're upping my MTX again. I'm still not sleeping great so I'm going to try something else for sleep. And we've officially changed my diagnosis to seronegative RA from "a connective tissue disease". All that means is my rheumatoid factor is negative. Treatment is still the same. I'm still borderline for lupus- so we're treating it since I did test positive 18 months ago, positive for APS and we're adding fibro! Lucky me! I've now lost count of all the labels I have :)

Jordan had another infusion a few weeks ago. She's responding really well to the Remicade. Eyes and joints look amazing. I hope she keeps responding. I hate these meds but she's doing things a normal kid does. She says she has no pain which is amazing. And she's going to be 9! Can you believe that? 9. It seems so weird. She's such an amazing little person and we are so blessed to have her.