World Arthritis Day!! 2012

Well, today is World Arthritis Day!  In the past I would see such days as World AIDS Day or Diabetes Awareness Day.  There would always be some ribbon associated with it.  You know the ribbon that is a different color depending on what the illness is. Well, for the first time ever I get it!  I really get it.  It doesn't matter what the color is but what it represents.  The fact that we all put on a certain color doesn't matter.....it's the fact that we had to consciously think about Arthritis while we were putting it on.

If you read other blogs like mine you have read others complain about how Arthritis kinda gets the shaft.  It's not that we don't feel like Breast Cancer Awareness, Cystic Fibrosis or AIDS is important....it is but we would like to be heard too.  In a weird way, arthritis isn't as popular as other diseases out there. Lets face it....when have you ever seen a well known super star on a talk show in tears talking about their loved one with arthritis.  Or watched a three minute commercial that brought you to tears because it reminded you of an important woman in your life that you have lost.  Plain and simple people just don't talk about arthritis.  Why?

Arthritis affects millions of people in the world.  If affects more children than many other diseases combined. Many arthritis patients have to take chemotherapy to treat their symptoms.....Alex does. Others have to go to Cancer and Dialysis Centers or hospitals to get infusions that take up to 8 hours to be pumped through an IV and into their bodies. Alex is only a couple steps away from this if her body doesn't go into remission soon!   Just like Cancer, Arthritis can spread into other areas of the body if not treated correctly or quickly enough.  And, just like Cancer there is a chance it could go into remission.  But, did you know that it can also be life threatening....just like Cancer? Yet people still associate arthritis as something their grandma has.  It is much much more than that friends!!

The goal of myself, my family and pretty much every parent of Juvenile Arthritis and of course the Arthritis sufferers themselves is AWARENESS!!!  I want there to be a 6 hour concert/telethon on tv with all the hottest celebrities out there.  I want to open a magazine and see a BLUE ribbon and a pair of hands that talks about how important funding and research are. I wan't to see pictures of beautiful children with a simple line that says "Kids Get Arthritis Too" underneath.   I want fundraising walks and runs that draw thousands and make millions!

So today on World Arthritis Day I did all I could.  My family and I wore our blue, we made cookies with blue frosting to hand out to friends, I wrote about Arthritis multiple times on my facebook account, my twitter and even Instagram.  I have done all I can for today but I am not finished. With the help from all of us we can bring a bigger awareness to arthritis.  Lets make it just as well known as any other terrible disease out there so that we can get help!  We need help by more research, more medicines, more doctors and bottom line more money!  Will you help me do this?  Together we can!!

Finally, I leave you with pictures of family and friends we love!  They chose to wear blue today for Alex but also for all of you who suffer out there.

My brother Mike

Michael and Matthew Lim

My sons best friends

My cousin Sue

Chris Cloud

A JA friend of ours

My husband Ben who sent this from Georgia

while on his business trip......after hours!

My cousin Tricia and Aunt Anne all the way from 

Tennessee!

My cousin Lynne also from Tennessee!! 

Alex's hand....swollen but proud to support! 

Alex brought cookies and coffee cake to school and 

received about $6.00 in donations!

I also had notes from friends on my facebook that did not post a picture but did wear blue.....

Ceci Mason, Heather Craig, Sara Cloud, Jody Mitchell, Michelle Nagelvoort and my mom Sue Barnes! Let me know if I've forgotten anyone!

Beauty Rest or Extreme Fatigue?

Hello friends.  Hope you are all having a great summer!  It has been a very mild summer here in San Diego.  The seasons really are changing!  We have not used our A/C once this summer which is really crazy!  Hey, I'm not complaining....I love a breezy 74 degree day like this!!

The girls start school in a week.  I'm not looking forward to it at all.   Carpooling, homework, early bedtimes and oh yeah homework aren't for me!  But, it is what it is.  Alex will be a high schooler!  9th grade!  I remember 9th grade like it was yesterday.  My first boyfriend, lockers, Friday night football games, dances, etc.  I am so excited for this time in her life!

Kiersten will be attending the same school but entering Middle School. It's a K-12 Charter school.   My youngest Ryan will still attend the elementary school down the street.  He will be a 4th grader.  He has the same teacher that Alex and Kiersten both had so that will be nice.  We really like her and she knows our family well.

Alex seems to be doing well......that is when she is not asleep.  I have never seen someone sleep as much as her.  I think what has happened is that her sleep times have been  turned around.  She is staying up so so late because she can't fall asleep but then she sleeps all day.   Last night I told her to go to bed at 11 pm and as of right now, 11:44 am she is still out.  I have gone to rouse her a couple times and she can hardly keep her eyes open to talk to me.

I have chatted with a few other RA moms and they all say their kids are the same. It could have to do with the fact that her body is constantly attacking itself, or the meds, hormones or that she simply needs the sleep.  I told her we need to start keeping a log so that we can see if there is any pattern to it. When she is awake she is fine.  She is full of energy and  happy.  I guess the reason it concerns me is because it seems to be getting worse.  I don't know how she will be able to sit through a day at school let alone come home and do homework.

Her appointment is in a couple weeks but I am hoping to get it moved up.  I will be sure to let you know.  So, bye for now.  Have an amazing week and I hope that wherever you are, you are able to get out and enjoy some great weather!!  Happy Summer!!

Progress?

Hello and happy February to you!!  This year is just speeding by and we are now entering our crazy months.  Between Feb 25th and Mar 19 four out of the five of us celebrate our birthdays!!  It's fun but always a bit crazy...planning birthday parties, dinners, gift giving etc.  This year has even a couple extra Feb bonuses with a concert on the 17th and Alex acting in her school play the week of the 25th.. Lots of crazy fun ahead!!

 Alex is doing very well.  She has been getting her injections for just over a month now.  You can't really see a difference by looking at her hands yet but I pray it is doing miracles on the inside.  She is tolerating her shots well....no reactions, rashes or rejection of any kind.  She has had some injection site redness and tenderness but that is completely normal.  It has strangely become very normal....me giving her a shot.....just like me giving her a tylenol or something.  She doesn't complain about having to get the shot and my hands no longer shake while giving it to her!  

On a personal note I had a tough day recently thinking about it all.  I know we are so so so lucky that she is not in pain.  She has said that she does feel some stiffness in the morning but not much.  What got me was reading about other patients who have Psoriatic Arthritis along with very severe psoriasis.  Alex does not have  psoriasis at this point in time but the odds are against her....her grandmother and father have it so it doesn't look good.  Ben's ( her dad) didn't get really bad until he was in his 30's.  Having a visible skin disorder can be very damaging for peoples self esteem. I worry that if she gets it before she has had a chance to mature into a strong woman that it could somehow hinder her.  I read stories about kids being teased and tormented because of their skin issues. It just breaks my heart.  All I can do is just pray that she never has to deal with any of it and if she does get it that she handles it with grace.

Did I mention that her birthday is February 25th and she will be 14!!  Wow....unbelievable!  She is becoming such an amazing young woman!  She still loves reading, theater, Disney and oh yeah reading! She is beyond excited for the new Hunger Games movie coming soon!
Well, thanks for reading another update! As always please leave a comment or note for Alex....she does read them.  Take care!!

Starting Enbrel

So, the doctor has decided to start Alex on Enbrel shots.  It took 6 weeks to get her medicine in our hands.  I only mention this in case you are facing the same thing.  First the insurance company denied it so my doctor fought for me to get it approved.  We also applied for financial assistance through Enbrel and got approved for 100% coverage for the first 6 months and then we only pay $10.00 after that.  Once that was all arranged it took about a week to get it in our hands.
So, the next step is meeting with the nurse to have her teach me to do shots.  I'm really praying that this will put her arthritis into remission!  The doctor really seems to think it will.

Other than that we are enjoying the holidays.  The tree is up, the house is somewhat decorated and I have bought about ......3 gifts so far..yikes!  I hope all of you have a very Merry Christmas and a Blessed New Year!!

Its Been A Year!

Wow, I can't believe it's already been a year since we found out about Alex's arthritis!  I'm sorry I don't update this blog more often but there hasn't been much to update......until today.  

Alex had a check up with her rheum doctor today.  As of her last appointment things seemed to be moving in a good direction.  Her swelling looked much better and we were told to just continue with her meds.  I didn't attend her last appointment (which will never happen again) and apparently the last MRI that she had had was not in her file when Ben met with her.  Well....today when I took her,  the doctor was sad to see how swollen her hand had become again.  I mentioned that it was especially disappointing since her last MRI was showing improvement and that's when things got a little crazy. I guess she thought that I had never taken her in for that MRI. The doctor seemed to know nothing about this last MRI and went scrambling to find the results. She eventually did find it and seemed so confused why she didn't have it at the last appointment. 

So she begins to read the findings to me and not only was there an increase in inflammation in the joints we already knew about but now there was a problem in her knuckles...it seems to be moving up her hand. 

So based on these new findings the doctor now wants her to start Enbrel (the dreaded shots).  She seemed very confident that this medication will stop the progression of her arthritis and hopefully even get her into remission.  For now she is to continue the Methotrexate as well. She said that once we see that the Enbrel is working we can start tapering off the MTX.  

My next step is finding out how much the meds will cost (apparently it can be up to $2000 a month without insurance).  Luckily we do have health insurance but it could still be pretty pricey.  The doctor did mention some sort of  offset that Enbrel will provide you with if you are a new patient so she is working on getting info on that for me.  Once we actually have the meds in hand Ben and I will have to go attend training on how to give the shot to her.  I have read and heard that it's not that hard and is probably more difficult for the parent than the child.  Still this was my worst case scenario so I am not too happy about any of it.  I know things could be much worse so I am just trying to be thankful for that. 

Other than that life is pretty good.  We are in full school mode and the kids are already looking forward to the holidays ahead.  It was funny....when leaving the docs office today she said "Have a nice Thanksgiving" and I looked at her like she was crazy.  She then pointed out that our next appt would be in December.....yikes!!  

Alex and a friend at a Halloween church event. 

So, just in case it is another few months before I post again....Happy Halloween, Happy Thanksgiving, Merry Christmas and Happy New Year!!!!   

MAY??? What happened to Jan, Feb, March and April!!!!!

Wow, time is truly flying by!  So much has happened since a few short months ago.  Lets see...well there was Easter, four birthdays under this one little roof (me, hubby, Alex and Ryan),  a great weekend away with Alex at the Revolve Tour (more on that later), The Royal Wedding (ok, this wasn't MY life but still fun to watch) and Osama.

Where to begin.  First and foremost an update on Alex since after all this blog is about her!  Ha Ha.....she is doing great.  Her blood labs continue to come back clear and her new MRI that she did in March came back fine.  Unfortunately I was sick and did not take her to her last appointment so I had to get a report from Alex and Ben (my husband).  For the most part the relay of information was great but what I really wanted to know was did the MRI show any less swelling.  Note to self....call Dr and ask!   What we did learn is that as of now the doctor feels that the Methotrexate has started to work.  She felt visually the swelling has gone way down....which it has.  She did not feel that it was time to start Enbrel shots which was the best news of all.  So, we are just back into status quo I guess.  She will continue to take MTX every Friday and go in for regular blood labs.  Her doctor appointments have been changed from monthly to every other month which is nice.  She has an appointment next week for another vision test to just be sure everything looks good and that's it.  I'm happy to not have much to report.

We had a great weekend back in April at the Revolve Tour.  If you have a teenage daughter I highly recommended it for next year.  Basically it is a  Christian concert/conference.  This years theme of the tour was Dream On.  So lots of the talks were about following your dreams until the end, never to give up no matter what. God has a plan for all of us and he will lead these young girls to where they need to be.  My favorite part was the music.  We were lucky to see Hawk Nelson, Britt Nicole and Jamie Grace.  All of them are amazing.  We had a very special moment thanks to my cousin Karen.....she happens to be friends with Britt so we got to meet up with her.  The girls and moms were so happy.  She is an amazing singer.  Here is her website if you are interested.   Thank you Karen again for such a fun time!  Here is a link to Karens website too :)

Ok, ok...enough of that!  I need to go and take Alex to youth group.  Thanks for reading and take care!!  Happy May!!!

Arthritis and Rain Don't Mix!

I have  heard people complain about achy joints when the weather gets bad but seeing it happen is painful for me!  This morning Alex had a pre-scheduled doctor appointment but while waiting in the waiting room I decided to take a new picture of her hand.  I was so surprised to see how swollen it was!  It didn't take long for me to put two and two together.....it's the weather!  Not only did her finger joints look red and painful but her knuckles were no where to be found.  The top of her hand is swollen and puffy. 

The doctor ordered another MRI to see if there is any progress that she could not see through the swelling. 

 If the swelling is the same or worse then we will be adding the dreaded Enbrel.  Now....this is only dreaded because I (or Ben) have to give it to her in a shot! I know its not as hard as it seems and that I will do just fine but who wants to have to give their child a shot.....EVER! Here is a little info on Enbrel for those interested.  

Enbrel is used to relieve the symptoms of certain autoimmune disorders (conditions in which the immune system attacks healthy parts of the body and causes pain, swelling, and damage. .Injection may decrease your ability to fight infection from bacteria, viruses, and fungi and increase the risk that you will get a serious or life-threatening infection.

As always thanks for the prayers.  I will update you when anything changes.  If you or someone you know has experience with Enbrel I would love to hear about it.  My neighbor Shelly is currently on Enbrel and has nothing but great things to say about it so that is comforting.