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!!