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! 

Goodbye 2010 Hello To New Beginnings!!

Happy New Year!  I know my last post was about how crummy last year was so I wanted to write about what I  am most looking forward to in 2011.  I am not one to make New Years Resolutions because honestly I never keep them. So this year I have come up with intentions.  I feel with a little faith and determination I will succeed. So here is my list of intentions for 2011.

1.  Be Thankful! We truly have so much to be thankful for.  We live in a beautiful city and state.  We both have great jobs that we love!  We are still happily married.  We love our kids!  We are blessed by a wonderful church that continues to strengthen our faith and teach our kids what it's all about!  My parents live close by and love us so much...and we love them too!!  Our kids go to great schools and have wonderful friends.  I have this blog to connect with other families out there!  I could go on forever!

2. Save Money! A few of our struggles this year were due to finances.  I vow to spend less this year than last.  To always use coupons!  To think twice about mindless purchases.  To work more and learn new things.  To sell what we no longer use or donate to those who really need it.  To make more meals at home.  And most importantly set a monthly budget and save save save!

3. Play More! This kinda goes along with #2.  Playing is free, its fun, its exercise, its relationship building, its skill learning and oh yeah fun!!!  One of my fondest memories growing up was sitting around my Aunt Anne's dining room table playing games.  We would stay up so late, just laughing, talking, bonding all while playing!  I hope to do more of that with my kids and friends and family.

 4. Strengthen My Faith I would love to join our small group bible study program at our church.  I also want to implement a family bible study.  We have done it here and there but when things get busy we let it slide.  If anyone has a program they follow I would love to know.

Well, I think that will do it.  What are your resolutions this year? Try setting intentions instead.  That way it is something you can truly work on all year!  If you have any good ones leave them in the comment section!

Happy New Year!!!  2011!!!

End Of The Year Update

Hello and Merry Christmas everyone! 

I have never looked so forward to a New Year as I am to this one.  I usually don't like to roll one year up into one bad one but seriously...if you know our family you would agree.  Just as a recap here are some things we had to face this year.... shoulder surgery, torn Achilles tendon, two bouts of oral surgery (me and Alex), roughly 9 cases of strep throat between all of us, Alex having tonsils removed, Alex being diagnosed with arthritis, my dad falling down the stairs and having surgery to repair his quad muscle, various car issues and on and on it goes. As of January 1st I will be looking at a clean slate and look forward to a much more fun and stress free year!

Since this is a blog about Alex and her arthritis I will update you on her.   She has such a great attitude about her illness.  She has been doing great remembering (better than me) to take her meds everyday!  After missing so much school for having her tonsils out and going to so many doctor appointments (12 days so far this year) her grades slipped quite a bit.  But I am happy to report that as of today she has mostly A's and B's again...one C in Spanish. She has worked so hard and has stayed after school for tutoring two days every week.  She pointed out to me yesterday that her fingers have seemed to swell up considerably again which is a big disappointment!  She has her next check up on Jan. 3rd so we will be discussing this with the doctor.  It did seem to be working there for a while so not sure if this is normal.  We are just hoping they don't move us up to the next med which will be an injection....given by me...yikes!

Other than that we are anxiously awaiting Christmas!  The kids are so excited and loving everything this season brings.  As for Ben and I we are trying to remain stress free and are so thankful for all that we have.  We have a roof over our head, food on our table and for the most part good health.  That is a lot more than some people have and we have to remind ourselves of that!

We wish all of you a very Merry Christmas and a Happy and Prosperous New Year!!   Thank you to all of our family and friends who have prayed for and supported us this year.  We love you all for it and it has not gone unnoticed!

Love,

Pattie

Pills, Pills, Pills!!

Today was Alex's appointment with her rheumatologist.  Now that her tonisls are out we can start treating her for her arthritis.  This makes it all so real now. 

Those of you who are familiar with arthritis are quite aware of the number one medication prescribed....methotrexate. Here is a short definition of the medication.

 MTX was used initially to treat cancer. By chance, it was discovered to be effective in clearing psoriasis.
In psoriatic arthritis patients, it may take up to six months for the drug to have maximum effect. Effects can include decreased inflammation and pain reduction. Methotrexate can cause serious or life-threatening side effects on your liver, lungs, kidneys, and bone marrow (immune system).

I have not picked up her rx yet but the doctor said she will be taking 6 (small) pills every friday night.  This is because MTX often causes nausea so she wants to have her start it over the weekend so she wont miss any more school.   She also has to take a prescribed dose of folic acid everyday.  This is to help with any side effects she may have. 

Now that she will be starting her meds she has to have blood work taken every 4 weeks.  If you have been reading this blog you know that Alex and taking blood don't mix. She has never actually fainted but has come pretty darn close.  Unfortunately she will have to get used to it.  It is very important to watch her liver while on this medication.

We will wait about 6 months to see if there are any results. This would mean visible results of her joints swelling to go down.  If yes then great!!  If not we will have to also add an enbrel shot to our routine......yes.....me giving her a shot!  Yikes. 

She also got her flu shot today.  This medication will mess with her immune system so we have to try to prevent her from getting sick!  Now I just need to get one for everyone else! 

Thanks for reading!  I will let you know how she does with her new meds.