Monday, December 19, 2011

7 things I've learned in 7 years of living with Juvenile Arthritis

This week marks 7 years of JA for our family. J's official diagnosis came in March 2005 but it was Christmas Eve 2004 when the nightmare began. This photo of the kids was taken just a few days before J's knee swelled up to the size of a softball. M was about 12 weeks old and my picture perfect little family was about to be changed forever.

Over the last 7 years I've learned several things about JA. Of course, one of the obvious things is that kids do get arthritis but it is not the type of arthritis that you automatically think of when you hear that word. What kids get is autoimmune -- the result of a faulty immune system. It's not the same thing my grandparents had. Well, in my case we do believe my maternal Grandma did have rheumatoid arthritis.  

1) Kids usually don't "grow out of it." They can go into remission but that doesn't mean it's gone. This type of arthritis is autoimmune and it can pop up again at any time. If a child did grow out of it, chances are they did not truly have juvenile arthritis. Odds are they had reactive arthritis or arthritis caused by a virus. You cannot cure JA.

2) Go with your gut. If you feel your child is not being treated properly, get a second opinion. Aggressive treatment is KEY in getting this beast under control. Do I think J could have had it easier if she were treated properly in the beginning? Maybe. But I can't go back so I'll never know. I drove myself crazy for a long time trying to figure that out. All it did was cause me more heartache so I had to let it go.

3) Don't do it alone. Look for online support groups. Contact you're local Arthritis Foundation Branch so they can get you in touch with another family who has been there. Email me. I went years not knowing anyone who had a child with JA. Once I connected with other families and heard stories of other children I knew that we were not alone in our fight.

4) It's OK to cry. 7 years later I still do. Every med change, every new joint, every flare. In my case, J wipes my tears.

5) Everyone has an opinion. It's true. Once you tell anyone your child had JA you will hear about every "cure" imaginable. Most people mean well. Some will think you are doing more harm to your child by treating him with traditional therapies. Unless you live with this disease you will never understand the decisions we, as parents, must make. A lot of medications to treat JA are new. We don't know the long term side affects. But we need to decide early on the lesser of 2 evils. For us, it wasn't a hard decision. I couldn't let J go blind or end up in a wheelchair. We had to give her a chance at being a normal child. I pray every day that we are doing the right thing.

6) These kids are stronger then we give them credit for. I believe that only strong children are chosen to live with a chronic illness. That could be cancer, diabetes or in our case, juvenile arthritis. Between our 2 children, J is the stronger one mentally. Matthew would not do well in the situation J has been forced into. I know some children adapt better then others but the children I have met with a chronic illness are simply amazing. I've seen these kids get knocked down by their disease but stand back up, dust themselves off and keep fighting. They don't give up. Which makes it easier on the parents.

7) JA affects every family member differently. This is something that I have recently learned. I'm emotional. Everything I do is based on emotion. Rick wants to fix things but this is something he can't fix. Matthew sometimes feels left out. J misses a lot of school for infusions, PT and eye exams. Matthew has been to every type of appointment J has had except her infusion. It's too long to have him come with us and our clinic likes to have the longer treatments come in first thing in the morning. I'm not going to  pull him out so he can see what it's like. I have recorded J's day at the clinic for Matthew so he can see what it's like but he still doesn't quite get it. There are times when Matthew is upset because I can't afford to buy him something because we have several appointments coming up. Having a chronic disease is not cheap. The co pays, meds and the gas add up real fast. Being that we are a single income family we live paycheck to paycheck. I do what I can for my family but sometimes I hear, "If you and Jordan weren't sick...." For a 7 year old, Matthew does really well. He understand that this is not what we want. We would much rather be able to take a trip to Disneyland or Universal Studios then spend what extra money we have on medical stuff. It's not fun for any of us. And a vacation? We've never have a family vacation.

I can't say that things have gotten easier for us over the years but I can say that I know so much more about JA then I did. My goal over the last few years is to educate others. We've done that. Since Jordan's official diagnosis in 2005, 2 other family members have been diagnosed with RA, 1 being myself, and another with Sjogren's syndrome - another type of autoimmune arthritis. We also have family members with Crohn's disease, diabetes and Hashimoto's. All are autoimmune diseases. Some doctors say they aren't related but I think they are. If I didn't do my own research I wouldn't have even known JA was autoimmune. J's first rheumatologist didn't bother to tell me that part. I about died because I didn't know what that meant for her.

Our life is not what we expected but I honestly believe that we are meant to share our story and struggles to help others.

Thursday, November 17, 2011

We have DEFINED knee caps!

Something so simple can bring such joy.

Jordan has defined knee caps after a year of not seeing them. Eyes still have some cells floating around but J's rheum and opth swear it's nothing to be conceded about. She goes back for an eye exam in about a month. As of right now we are not changing any meds but we are adding something to help her tummy. I'm pretty sure the mobic is causing her the tummy pain she has.

PT is going good. We are finally where we should have been all along. Ms. R knows her stuff and I trust her completely. There are a few things we are worried about but the request for special x-rays are in and we should know more soon. The last thing she needs is another diagnosis/issue but we'll take it as it comes.

Other then that things are the same here :)

Sunday, October 30, 2011

If it's not one thing, it's 20 others.

I blame myself for J's health. There is no denying that she got my bad genes. Obviously, there is nothing that I can do about it. I did everything right during my pregnancy but she still has JA and uveitis.

J went to a new PT on Friday. This one has worked with JRA kids for years. She worked at CHLA and worked very close with the rheumatology department there. I have put all my faith in Rose. She did things none of the other therapists did. She measures J's hips, knees, checked her back for scoliosis, which also runs in my family but so far J looks good-- WOOHOO!

After all this measuring I find out J's hips are a mess. She guards her knees which has tweaked her hips. She actually has contractures in her hips just like she had her in knee when she was first diagnosed. She still kinda does but it's not nearly as bad as it was. It's going to take a while to fix this but we will do our best to get J where she should be. J has lost almost all range of motion on her ankles and her hamstrings are really tight. All this explains why her hip hurts and why her back has started to bother her more in the last month. We haven't even assessed her upper body yet.

For now J has instructions to A) lay on her tummy for 30 minutes EVERY DAY with her toes hanging off the bed. I am to keep her legs parallel and make sure she doesn't rotate them out. Her hip bones are to be flat for the entire 30 minutes. B) the "runners stretch." Basically she will lean against the wall, one leg in front of the other, knees bent and feet parallel. It doesn't matter how close she is to the wall as long as she can keep her feet parallel. C) Hip flexor stretching. I get to make sure she doesn't rotate her hips and legs out. And D) this is the worst-- no more "pretty" shoes. No more flip flops, no more flats, no more bling. If you know J you know she LIVES for shoes. There was talk about getting her some arch supports and of we do I can see if she would be allowed to wear her other shoes once in a while. But for now it's a good pair of Nike cross trainers. If this doesn't help then I don't know what we're going to do.

We have orders for hip xrays next time we go see Dr. G. I have suspected she has arthritis in her hips for a long time but after seeing the new PT I'm wondering if it's everything else making her hips hurt. Either way it's related to the arthritis.

I know it's not my fault but I passed on my mess to her. I will do my best to fix her and try to take away the pain that she denies she has. Kids who are young when diagnosed with JA often say they don't hurt or they down play it. It's routine for them. No child should live in pain, EVER. I found out that J should have been going to PT on and off for the last 7 years. The reason she is so tight and has the  contractures now is because she did not get the therapy she needed. I should have pushed but I didn't. And look where we are now.

If you are a parent of a child with juvenile rheumatoid/idiopathic arthritis, ask about PT. Follow your gut and question your doc. It could save your child a lot of trouble later on in life. 

Sunday, October 23, 2011

Part 3-- The Infections

So, in my last post I mentioned we took the kids to the Science Center. Being in a public place like that is ASKING for an infection for people like J and I. And an infection did I get. Within a few days I was sick. So sick I was sleeping 16-18 hours a day. I had no idea what was wrong. I assumed it was the chronic EBV, epstein barr virus, and assumed I was in for a few weeks/months of being miserable. On Saturday 10/8 I was so bad that Rick kept taking my BP every 2 hours or so and it kept getting lower and lower. Finally he said enough and we were off to urgent care. IV fluids, blood work, xrays, a dose of toradol, an amazing NSAID might I add, and my pain was down to a 2. I didn't realize I was in that much pain until after I got the toradol. I was offered morphine but declined. Anyway, I guess my labs were OK but the doc asked one question that kinda threw us for a loop. He asked if I had recently come off steroids. Why yes, in July. Why? I was going into adrenal shock. I immediately got 2 doses of IV Solu-Medrol and was instructed to start prednisone again. Xrays showed I was also at the beginnings of a sinus infection. I needed to contact my rheumy ASAP. I had a neuro appt on 10/10 for the seizures and he made the appt for me with my rheum. On Tuesday 10/11, I got a call that radiology reviewed my xrays and I had pneumonia. 

It's been 2 weeks and I feel so much better. I can function again. I remember what I did that day. I'm not 100% but my 100% is probably different then a healthy persons 100%. I don't need to nap but I do need to rest through out the day and I need to be in bed at a decent time. If not, I suffer the next day. 


I have an infusion on today and I'm hoping I'm healthy enough to not relapse. That's my biggest fear right now. You don't realize how fast things can go downhill until it happens. I don't want the kids to see me like I've been over the last 5 weeks. It scares them to see me so sick and seizing. 


Oh, and we found out the cause of my seizures. My pain med, tramadol, AKA ultram. Tramadol can lower your seizure threshold and after 3 years we now know that is what causes my "episodes." So, no more pain meds for me. My rheumy doesn't like to give stuff out so I'm stuck with naproxen. If the pain gets really bad, and I'm hoping with my upped Remicade dose and increased frequency I won't have any, I can go to urgent care, the ER or call my rheum. 


That's where I'm at right now. I'm a whole lot better then I was a month ago.

The roller coaster known as ______________.

Everyone can fill in that blank. For us, it's autoimmune arthritis-- juvenile arthritis AND adult. Oh, uveitis and a few other AI diseases as well.


What people see when they look at Jordan and I are a healthy mom and daughter. They don't know the medications we need to take in order to LOOK healthy. Jordan and I are both on a biologic medication that is infused via IV anywhere from every 4 to 8 weeks. Right now Jordan is at 4 weeks and I am at 6. This particular medication causes our immune system to suppress which leaves us susceptible to infections.


Let me go back to my last post, Wednesday night part 1, the good part. I never did get back to the rest of what happened that night. See, I suffer from focal/pseudo seizures, depending on what doctor you are talking to. While we were waiting for our car after the Kings game my leg began to jerk. Withing 5 minutes I was holding on to Rick begging him to not let go of me because I knew I would fall. I don't know what triggered the episode but it got bad. We get out car and within minutes I'm seizing. Like an idiot, I didn't have my meds. Our goal was to get home. I seized the entire way which was about 1 hour. If I was an epileptic Rick would have called 911 or we would have went to the nearest hospital but there isn't much the ER will do for me.


We finally get home, I'm still seizing and Rick can't get me out of the car. There is no way I can walk so off to the ER we go. While at the ER not once but TWICE I was called a liar and Rick was told I was faking. This is why I hate the ER when I have these episodes. ER staff typically only see epileptic seizures. They don't see what happens to me. I won't go into what all happened, but in the end I got the med I needed and after a few hours I was home. 


This sets me up for who knows what over the next few weeks. I'm on this med that makes me loopy. I don't remember what happened for a good 2 weeks. I function but I have very little memory of what went on. We took the kids to the California Science Center on Monday, 10/3. It's one of their very favorite places. Best part, it's local and pretty much free. You make a donation and you're in. Too bad I don't remember most of the day. I know we had a good time and I know we went to dinner after. Unfortunately, looking back at the photos I remember a lot less then I thought.


J and Matty standing in front of one of the Apollo Capsules


Our 2011 family photo

My favorite photo of the day.
Me and my boy.


Part 3 to come. I know you can't wait ; )

Monday, September 26, 2011

Wednesday night part 1, the good part.

Wednesday was one of those treat days we rarely get. By the grace of God we got free LA Kings tickets. We had the most incredible time as a family that I could remember at a game. Our seats were horrible but that didn't stop my boy from being as loud as he could possible be. Each time the Kings earned a Power Play you'd see the 4 of us head bangin' to Metallica, AC/DC or whichever band they played for that particular power play. My family LOVES hockey. It doesn't matter if the Kings win or lose, for us it's about the time spent together.

Every year I make the kids take a photo with Wayne. This started when I was pregnant with Jordan. The very first photo we have with Matthew and Wayne was taken the day before I found out I was pregnant with him. I have 10 years of photos like these.



My kids are loud. I'm sure they annoy people at the game but the way I look at it, if you don't want to hear the screaming fans, stay home. 


The kids are slowly learning the rules.If there is a bad call made they'll let you know. Hmmmm.... did Daddy have anything to do with that? The Kings lost on a bad, BAD call but the memories of that night will stay with me forever. Matthew yelling at the ref was priceless. Getting the crowd into the game IS his thing. Up until this year I'd say he bleeds purple and black like Rick but they went and changed colors so now he bleeds black, white and a bit of silver.  

And yes, again we were reminded of how spoiled we've become over the years. 300 level seats are great if they are free. If we're paying, we're down by the glass. And my fingers and toes will be purple-- thanks to my Raynaud's ;) But it's worth every single minute.








Sunday, September 11, 2011

Ten years ago today...

I turned 27. I was pregnant with our first child. America changed forever and I was reminded that life goes on.

Pregnancy insomnia was something I learned to live with. I woke up at 2:30 AM which was very typical for me during my pregnancy. I laid in bed for a while trying to go back to sleep but decided to get up around 3. I turned on the TV and watched the rest of Deep Blue Sea. After that Full Metal Jacket. Rick got up around 6-6:30 then headed to work. Shortly after that I turned to the local morning news and what I saw I will never forget.

For hours I watched TV. I sat sobbing for every person lost. Every family who would never see their loved one again. For the children who would grow up with their Mommy or Daddy. I also cried for the little baby swimming safe inside me. I couldn't imagine bringing a child into the world after 9/11.

At some point I pulled myself away from the TV to shower. My annual birthday breakfast with my favorite aunt was not going to be taken away from me by some terrorists. After breakfast I went home and was glued to the TV until about 5. After Rick got home we went to my parents for dinner. We had dinner then watched President Bush address the nation. I laid on Rick's lap, crying, while he played with my hair. Again, I was thinking about bringing a new life into our troubled world. I thought we were crazy. I was sure that the attacks in New York and Washington DC were just the beginning of an all out assault on America. As I was thinking the worst was still to come I felt a tiny little tap. Kinda like what a bubble popping would feel like. I brushed it off and figured it was gas. Then it happened again. And again. My Peanut was moving inside me. Tears of sorrow were now tears of joy.

I don't know why I felt Jordan when I did but I needed to at that moment. My entire outlook changed with those tiny taps. Jordan gave me the best birthday gift I could have ever asked for. Every year as we remember those who were lost, I will thank my Peanut for reminding me that even in our darkest hour when we feel hopeless, life will go on.





 

Sunday, July 17, 2011

Life as a 'sick' Mommy

For as long as I can remember I wanted to be a mom. I baby sat all the time as a teen, worked as a preschool teacher, worked in a children's resale shop... all because I love kids.

In April 2002 Jordan was born. I was a Mommy. If you are a parent, you know it's not an easy job. Being a sick parents makes it even harder. For as long as I can remember I've had pain and was easily fatigued. It was just something I learned to deal with. I remember being exhausted when J was a baby but I figured that was normal. The pain in my pelvic area was chalked up to my c-section. So, I just went on with life.

In September 2004 Matthew was born. Shortly after that Jordan started having her issues. Between having a newborn/infant and a toddler who was in pain, I kinda forgot about my pain. Right before Matthew turned a year things changed. I remember getting awful headaches, worse than what I was having before. My pelvic pain became almost unbearable. I was bouncing from doc to doc trying to find an answer. Being brushed off and told I was fine, that I needed to see a shrink or given different anti depressants.

In October 2008 I was given the name of a doc who would do a hysterectomy (at the age of 34) seeing how I thought 95% of my pain was caused by my uterus. Turns out I was right, kinda. I had adenomyosis, and my right ovary was covered with cysts. About a year later I found out that I also had interstitial cystitis. The causes of my pelvic pain was solved but the rest of me hurt too. More than I had originally thought.

After years of chronic pain I found a doc who sent me to a rheumatologist. Brilliant idea seeing how I have a daughter, a sister and a first cousin all with autoimmune diseases. At my first appointment with the rheumy I started meds. We didn't know what we were dealing with but he knew it was an autoimmune connective tissue disease. Turns out I have a few...

I was officially diagnosed with lupus, sero negative RA, fibromyalgia, Raynaud's, antiphospholipid syndrome and a few others. All of those are autoimmune. My immune system is jacked up and instead of attacking bacteria and the bad stuff, it's attacking healthy tissue. Which causes pain.

Being a mom with all these diseases is hard. I'm taking several medications, including low dose chemotherapy, and they leave me tired. As if the diseases themselves aren't enough to deal with there are side effects from every med I take. Because most days I feel like poop, it leaves me feeling like a bad mom. I can't be in the sun, I can't handle the heat, too much walking/standing hurts. So yeah, our summer has pretty much sucked.

I started Remicade a month ago and I've had 2 infusions. I'd like to think it's working but I really don't know. I've had a lot of pain the last 2 weeks. So bad that I almost had Rick take me to the ER in the middle of the night. Problem is, even if I went, there isn't anything they can do for me. I already have pain meds, muscle relaxers and steroids at home. I don't want to be looked at as a drug seeker because I'm not. I just want to manage my pain better so I can do stuff with my kids.

I didn't ask to be sick and I don't like being sick. I don't like my house being a mess all the time because I can't find the energy to clean on a day where my pain is minimal. For the last month my pain has been about 6. 8 or 9 a few times and a 4 on a GOOD day. My kids saw me sobbing in the shower because I hurt so bad and I couldn't "suck it up" anymore. I had taken all the pain meds that I safely could, yet thought about taking more in hopes that it would ease the pain enough so I could sleep. I cried myself to sleep with Rick by my side only to wake up less than 60 minutes later crying again.

And I'm not alone. There are millions of women just like me, trying to be a good mom and wife that live in constant pain. Don't forget, I have Jordan who has her own issues. We run from appointment to appointment and it's exhausting. I have a hard time knowing that she will probably be facing the same issues I do someday. Of course, I hope I'm wrong but reality is she has a chronic autoimmune disease too. It can flare just as bad as mine has at any time. I just pray it doesn't.

Thursday, July 14, 2011

A message from Jordan

"I have an invisible disease but my pain is really, real."

School starts in a little over a month and I'll go in and talk to her class like I've done before. But how do you get a bunch of 4th graders to really understand? Jordan misses a lot of school. Between her infusions, PT, eye exams and being sick her classmates think they can catch what she has. They don't believe her when she says she hurts. So, what to do??

Jordan's next infusion in less then 2 weeks. I'm bringing the camera and recording bits and pieces again. I'm going to put together another video  of her day at the clinic sans the Linkin Park soundtrack ; )  I don't want her to go through another year of being called a liar or kids being afraid to play with her because they might catch arthritis.

Of course I'll let the staff see the video before I go in but I think it's important to show these kids that yes, she's different but she's not going to hurt them. Her missed days aren't fun. In fact, they suck.

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.
   
                      

Monday, May 2, 2011

My kid has done her time. Enough is enough.

Well, little Miss Jordan Lynne is trying to flare. In addition to the inflammation in her eyes, she has some swelling in her hands. Labs are starting to climb as well so we increased her Remicade. We'll see how her eyes are in 4 weeks and then we'll see how she is doing overall in 6. If she still has some inflammation going on, she'll be going back to infusions every 4 weeks and we'll need to up her MTX back to where she was a few months ago.

Dr. G and I also decided that Jordan needs to start PT again. Jordan has adjusted the way she walks/moves because of her pain. Her leg and ankle muscles are extremely tight because she guards her knees when she walks. I don't know what she does, how she does it or how long it's been going on but we need to fix it. I should get a call this week from the peds PT department and we'll schedule her appointment.

Today while we were at the infusion center I decided to take lots of video clips of Jordan's day. Matthew was under the impression that it's a "fun day" when she goes. He now knows different. Having to sit there all day hooked up to 2 machines is NOT fun. So, I put a few of those little clips together for him. Jordan loved it and asked if we could put it to music and upload it to YouTube to share with everyone. Of course I said yes! So here is a look at Jordan's day at the clinic.


Wednesday, April 20, 2011

Random thoughts

Last night as I drifted off to sleep I thought about Granny. For anyone who doesn't know, Granny is Rick's Grandma. She became my Grandma too shortly after Rick and I started dating. We moved in with her shortly after her husband passed away. Granny was a cancer survivor. Breast cancer in the early-mid '90's, colon cancer in 2000 then breast cancer again in 2007. This time the cancer went to her bones. She fought hard for a few years and worked part time until August 2009 when she fell and shattered her elbow. From then on I did my best to take care of her. She did great for a few months but around Christmas she got sick. She was put in the hospital and released then put back in a few times. She knew her time was coming and she was totally at peace with that fact. I can only hope to face death the same way she did. The beginning of August we began to realized how little time we had left. Somehow she broke her clavicle. I think she said she had reached for the TV remot or something. I was up with her all night. Rick and I took her to the doc and we were told the cancer was pretty bad and there was nothing to be done for the break. They couldn't set it or do surgery because her bones were so weak. A week or so later she got up to go to the bathroom and her leg snapped. I called 911 because we couldn't transport her to the hospital. As she was being taken out of the house the kids said goodbye and told her that they loved her. That was the last time they saw her. She passed away on August 21, 2010, exactly 1 week after she fell. And exactly 51 weeks after she fell and shattered her elbow.

  Last night I laid there thinking, it's been almost 8 months since she passed. I've never been back to the cemetery after her service because she made me promise I wouldn't. She told me that there was no point going to a place where she wouldn't be. The night she died we found something she wrote years ago. Basically, it stated the service she wanted and it specifically said do not go to her grave site. That's stuck with me over the last 8 months. Her headstone has been there for months and I have yet to see it. Granny's birthday is coming up and I have thought about going to see the stone. Not because I think she's there because I know she's not. She's here in the house with us daily. I want to see the headstone.

I woke up this morning got myself and the kids ready. I was still thinking about going to the cemetery. I go about my day and my sister tells me that our Grandma has taken a turn for the worse. She's in the advanced stages of Alzheimer's and reinal failure. This isn't anything new to us. We've been told a few times over the last  2 years she's close to death. Sometime between 4-4:30 my mom calls my sister and tells her she's going down to see Grandma. It was decided that she would be taken off all nutritional supplements and we're going to let her go. She's been in and out of a catatonic state for a while and she has no idea what's going on or who anyone is. She never knew my kids. Half the time over the last 15-16 years she didn't know who I was.

8 months ago I was sitting her crying because I was losing my Granny. And tonight I sit here crying because I'm about to lose my Grandma. Technically, she's gone and I've said my goodbyes. I've said for years I wish it was over because the way she's lived for the last few years is no way for ANYONE to live. And to watch someone suffer through that is heartbreaking. I don't wish it upon anyone.

Praying for a peaceful passing for you Grandma. Tell Grandpa I said hi. I love you and I miss you, I'll see you again someday.  


Sunday, April 17, 2011

Kids get Autoimmune arthritis! It's not the kind Grandma has!

Another look at a child's life with juvenile autoimmune arthritis. My J is just one of 300,000 in the US. Emily and Abbie are the other 2 girls in this video. I can't thank their families enough for letting me use their photos.

Thursday, April 14, 2011

"pink jordans 2011"

Within the last week or so there have been several visitors to our blog using Google. They type in the same thing "pink jordans 2011" every time and it brings them to my post about our walk. I don't know why but it's done about 2 times a day from different parts of the country. I'm sure it's a group of people mocking us or a group sitting around criticizing our decision to treat Jordan the way we are. Obviously, they really aren't interested in our story or they would leave comments or contact me. Why stalk my blog? If you aren't hiding, then why not just follow us? I don't get it.

Speaking of pink angels, aren't these cute?! One of the members of our Pink Angels  is a JA survivor. Katie's mom hand painted these pins for us to hand out with every donation of $20 or more. I love the team we have this year. We've got 25 people signed up to walk with us and more signing up soon. I hope everyone follows through. If not, I'm going to have a very unhappy Peanut on my hands. 

Friday, April 8, 2011

Does this happen to you?!

This is something new for me. At least once a day my hands and feet do something weird. They get red, swell and feel like they're on fire. It starts with one finger or toe and spreads to the rest. These episodes last for about 30 minutes. And it hurts. This photo was taken at the beginning of an episode and really doesn't show much. Bub was the only one here with me and snapped the pic real fast.


I emailed my rheumy about it and she said it's RA. She wants me to start back on pred, which I just weaned off of, and we'll adjust my meds again when I see her in June. But if these episodes keep up, I think I'll need to see her sooner. I don't know what else we can adjust. I upped my MTX last month because I wanted off pred. I was feeling good and I thought it was time. I had no idea it was helping so much but I hate the weight gain with pred. Not sure what I'm going to do next.


We spent the day in Ventura with a new friends this past Monday. We met a 3 year old living with JA, her mom and her cousin. Being out there made me realize how much I miss living there. The kids were home. As soon as we opened the doors they both took in a big breath of ocean air and sighed. They miss it as much as I do. We used to pack up and head to the beach to watch the sunset at least once a week. A spur if the moment trip to the pier to fish was also common.

I feel better when I'm out there! I found out that being in the sun isn't a good thing anymore but while we were there I felt amazing. When I go to the beach or plan to be in the sun for any length of time I will be wearing long sleeves and pants. I've had a lot of pain and swelling this week. But it was worth to meet an amazing little girl and to see the kids playing on the beach again.






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.

Tuesday, February 22, 2011

Proud Momma

Jordan has been asking for a while if she could have her own blog. She wanted to let other kids know that they aren't alone in their fight against JA. She started out doing videos of her injections on YouTube and she had such a positive response she wanted to do more. I gave in. She is now blogging about her arthritis. She wants to raise awareness that kids do get AUTOIMMUNE ARTHRITIS. She wants a face out there to show people it's not only the elderly with arthritis. She wants it to be her face and we support her 100%.


Jordan's experiences, in her own words: Warrior 4 JRA

Monday, February 21, 2011

A little look at J's infusion

There is a reason for everything.

Yes, we've all heard that over and over again but it is the honest to God truth.

Our life isn't what we had planned it to be. But really, how many people have a plan and actually stick to it? We all think we know what we want and need but then something happens and your faced with a reality you didn't expect.

Our reality is autoimmune arthritis. Blah, blah... I say that all the time, I know. But if J didn't have JA our family would have missed out meeting some amazing people. I've met several mothers in the same situation I was in 6 years ago. Lost, confused, hopeless and not having any idea what the future held for my child. I still don't know what the future holds for Jordan but I know she will be OK. I've met some amazing young women who have lived with this disease since they were just babies. The pain and struggles they've been through are hard to hear but they are here and they are a functional part of society. They advocate for themselves and the thousands and thousands of children just like Jordan.

I can say the hardest thing to do as a mother is watch my child suffer but God has a reason for it. He is using Jordan to educate people about this disease. And I'm not forcing her to do this, she wants to do the videos and share them with anyone and everyone willing to watch!

Big things are in the works with the help of a little girl. God is using my baby in way I never imagined.

Thursday, February 10, 2011

It's the little things that bring tears to my eyes



There was a time when I wondered if she'd ever be able to do something like this. In the past Jordan would jump for a bit then do something else. I knew the next day she'd be in pain and swollen but how do you tell your child she can't play with her brother and friends? We never did. We figured Jordan knew her body and her limits. She quickly learned what happened if she over did it.

Since starting Remicade, Jordan has been doing very well. Her labs are all back to normal, swelling in her joints is gone and she has NO inflammation in her eyes! NONE!!! And she can jump. She jumped for at least 1 hour on Tuesday with my cousins kids. She was tossing herself all over the place and I figured this would be our test to see how well the infusions were working. No pain the next day. She's fine.

Infusions are now spread out to every 6 weeks. As long as her eyes stay quiet and labs look good we'll stay at 6 weeks or maybe even go to 8. She's still doing MTX at home and we're increasing her leucovorin to help with the nausea. We'll see if that helps.

I think for the first time in 6 years she's really pain free. I pray this puts her into remission.

Sunday, January 30, 2011

Our little secret

If you're a FaceBook friend you've seen me talk about a secret. Well, it's time to share that secret :)

Last year at one of J's appointments I was given info about The Jeffrey Gottfurcht Children’s Arthritis Foundation. JGCAF grants "dreams" for kids with juvenile arthritis. Dr. B insisted I applied for Jordan, so I did. Months passed and I totally forgot about it.

I got an email in early to mid December saying that Jordan was selected. Things had changed as far as her treatment went and this really couldn't have come at a better time for her.

So, instead of getting the kids up and off to school on Tuesday we will be picked up and head off to The Grove and spend the day at American Girl Place.

Jordan knows she was selected for a dream because I had to find out what she wanted to do. She wants an American Girl doll, so we went with that. She thinks she's getting *a* doll and has NO idea what she's in for :)

Matthew is so excited for her. He knows what's going on and that Tuesday is a special day. He knows we're getting picked up by a limo and this is a special day for J. I talked to him about all of this over the weekend because I wanted to see if he'd feel left out or jealous. Not the case at all. He's happy that Jordan is being treated to a FUN day because she has arthritis. He said she needs this. God, I love my boy.

Photos and a post about our day will be up some time on Wednesday. Thursday at the latest.

If you happen to see us tomorrow PLEASE!!!! don't say anything! Jordan has NO IDEA! NONE! I can't wait to see her face!

Saturday, January 29, 2011

To our friends & family

I'm not sure how to go about this so I don't offend anyone. I really don't mean to and if I do offend you, I apologize. This is something I have been trying to put into (nice) words ever since Jordan brought it to my attention a few weeks ago.

Most of our friends have known our family for a while. Some of you remember everything we've been through with Jordan. Some of you have read or have heard Rick and I talk about Jordan and her issues. She's been fighting autoimmune arthritis for just about her entire life. Remember, she's not even 9 yet. 6 years have gone by and she's not been in remission once.

4 years ago we began taking part in the Arthritis Foundation's annual Arthritis Walk. Our first year I think we had 8-10 people on our team. The following year the walk was at Magic Mountain and we had a pretty good turn out. I think we had about 20-25 people walk with us. Last year, our team dropped back down to 10 people.

When I registered our team this year, Jordan asked me if we were going to have a big team like the other kids with JRA have. I wanted to say, yes, of course! But all I could tell her was that I hope we do.

If she had cancer or diabetes or cystic fibrosis would you walk for her? Would you raise funds to help find cure or for programs for sick kids?

Jordan isn't that different from the kids who have those diseases. She does weekly injections of chemotherapy. CHEMO! And it makes her sick. She has to go to the hospital once a month to have medication given in an IV. She has lab work done every month. Her life is quite different then the life of a healthy child. She's had grown up way too fast and she knows when she has the support of her friends and family.

What I'm asking, OK begging, is that you please give up a Sunday morning in May to show Jordan that we love her and we DO support her in her fight against this disease that has taken so much from her. I do understand people have to work and life happens but it's just a few hours and it would mean so much to her. The walk will be held at Magic Mountain again this year. One lap around the park and you're done! If I can do it and Jordan was able to walk it, YOU can too!! There is entertainment and snacks and it's FUN!

Thank you,
Rick & Stacey

Jordan's PINK Angels