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!!!

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.  

Loving 2011 Already!

So far I would have to say the year is off to a good start!  Everyone is happy and healthy and I have been enjoying spending time with Alex since she has an extra week of Christmas break. 

Her doctor appointment went fine and pretty uneventful.  The great news was that her lab results all came back fine. The doctor was looking for any signs that the medicine (methotrexate) was causing damage to her organs and so far it is not.  On visual inspection though she felt that Alex was still showing a significant amount of swelling and is just stunned that she has no pain or stiffness.   She said that Alex must be blocking the pain because it would be impossible to have that much swelling and no discomfort.  I believe she must have inherited a high pain tolerance from my mom whom after open heart surgery did not complain once of being in any pain!   

She will be having another MRI in February or March to compare to the original one to see if there is any reduction in inflammation.  They will also scan her left hand and feet to get a base reading on those areas.  

Other than that life around here is getting back to normal.  The Christmas tree is still up and frankly I don't want to take it down!  I love the holidays and don't want them to end.  Maybe this weekend...sigh.....

Happy New Year once again!