Hello friends...thanks for stopping by!  It's March now.....we are in the thick of busy birthday time!!  Alex turned 14 on February 25th!  It was a very fun day!  She was in a play through her Advanced Drams group at school.  Afterwards we had cake with her cast and crew!  It was great to see how loved she is!  She did a great job and made us very proud!  This Saturday is my husband Ben's birthday and the following day he and Alex are going to Disneyland to celebrate their birthdays and have a very special daddy/daughter day.  Next week on the 16th I turn 41...and on the 19th my son will be 9! Fun Fun times ahead!  

 Alex is in her 3rd month on Enbrel.  She will be getting her labs done (blood work) this week and has her appointment with her rheumy on Monday the 12th.  At this point I have no idea if it is doing anything.  By looking at her hand you can still see swelling so I think the only way to truly know is by doing another MRI.  I am not sure if the doctor will order one right away or not. 

I was really happy to meet (virtually) some other moms last month who have children with Psoriatic Arthritis.  I even met someone who has a daughter with arthritis without the psoriasis so it will be nice to keep in touch and compare stories with each other.  Her daughter is a bit younger and unfortunately has more pain and symptoms than Alex.  She just started Enbrel so I am praying she gets lots of relief soon!  

For anyone just starting this journey I wanted to get you started with some great sites.  There is a ton of information there for you!  

The Arthritis Foundation-Lets Move Together

National Psoriasis Foundation

Questions

So after that last post I received a few questions for me.  Don't worry....Alex is still going to answer your questions too. I will just post the questions and you can scroll down and read any you are interested about.

• 1.  Do you have Psoriatic Arthritis or Psoriasis? No I don't but my husband and his mom have Psoriasis.  His mom also has arthritis as well. 
• 2.  Does Alex have Psoriasis? No, not yet anyway.  Only 15% of people with Psoriatic arthritis DONT end up getting Psoriais.  
• 3.  Will it ever go away?  Well, her symptoms can go away (remission) but she will have it for the rest of her life. 
• 4.  What's the hardest part for you as a parent?  I would have to say the worry about it all.  You worry if these medicines can be doing permanent damage, about her long term prognosis, what if we lose our insurance and on and on.  But, I would have to say that I have a lot of confidence in her doctor and feel that everything we are doing is the best we can do at this point.  I pray about it a lot too and have our church and friends praying for her all the time. 
• 5.  Will your other kids have it?  We really don't know.  I was just reading that it is not extremely common for siblings to get Juvenile Arthritis.  So, we will just wait and see. 
• 6.  What's one thing that you want other people to know about PA?  I think what I want everyone to know is that yes kids can get arthritis too and it can be very serious.  We are so so lucky that Alex has a very mild case but there are thousands of children out there that are wheelchair/home bound because their disease is so debilitating they can not function.  I had no idea until Alex was diagnosed.  These families need our support through prayers and donations so that a cure can be found! 

That's all I have for now.  If you have any questions for Alex or me just leave a message.  Thanks again for reading about our lives.  It means a lot to me!  

Coming Soon.....

Wow, I have had so many new visitors in the past 24 hours!  This is so exciting!  Thank you all so much and welcome!!  
So, a while back I was having a conversation with Alex about her arthritis and her involvement in it's community.  You see,   it's all so new to us and we were not even really aware of what was out there for her.  So I went searching on the trusty internet and yes I found some information but  I wanted to find other moms, other teens, other experiences of what worked for families and what didn't, advice on what to tell your friends when they ask why you have missed 12 days of school already and why your mom has to give you shots......I just couldn't find what I was looking for.


So, it got me thinking... there has to be more families, kids, moms, grandparents, teachers etc out there who feel the same way.  This illness is just as serious as some other highly talked about ones yet not many people know about it.  I started this blog when Alex was first diagnosed to keep in touch with my family to keep on top of how Alex is doing but then I thought....why not expand this and reach others who need help and answers too.   


I kinda left it up to Alex....after all she is the one with arthritis not me.  Well, she wants to start a blog/website for other teens dealing with this. It will be a sub blog attached to this one where she will write about topics related to being a teen with arthritis and other fun stuff too  She is so excited about it.  She is starting with a video greeting/ q & a series.  I will post the video here when she is finished but for now she has a request for all of you.....


Please leave a question in the comments for her....it can be whatever you'd like....about Psoriatic arthritis, what it feels like, what she wants to be when she grows up, favorite tv shows etc.  You can also leave topic requests.


Your support in this means so much!  By the way, I have also been in touch with some great ladies at the National Psoriasis Foundation and we are very excited about doing some great things with them in the future.  

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!!!