Alex's Journey

Time Flies Whether You Are Having Fun Or Not!

2015-01-24T15:28:00.001-08:00

I hate starting every blog post like this but really.....where have the last two years gone! Let me just take a few minutes to catch you up!

I'll start with the kids. Alex is almost 17 now.....I just can't even believe that. She is a junior in high school and loves it. She decided to join her co-ed wrestling team this year to my surprise. She has never been into sports....at all. In fact the only activity she has ever participated in was a spring soccer program for 6 weeks and that was because one of her best friends was doing it at well. Anyway, she loves it. It is very physical and the training is unreal! Running, weight lifting, squats and of course...wrestling! She has been able to keep up with the training amazingly well despite her arthritis.

Another big change for Alex is that she is now vegetarian. We are not huge meat eaters as it is but now she has completely cut it out. She also cut out all soda, fast food and most sweets. This was entirely her decision and I am proud of her.

Health wise Alex has been doing pretty good. Over the past few months she has noticed a lot more aches and pains all over her body which always seemed to coincide with the rain. While it is common for arthritis patients to have this happen it is actually not that common for PsA patients. The doctor thinks that there is a chance that she may also have fibromyalgia . We are paying closer attention to her symptoms and pain and will report back to the doctor in four months. It is quite common for kids with an autoimmune disorder to develop more than one.

As most of you probably already know my son Ryan was also diagnosed with Psoriatic Arthritis in December of 2013. He was having terrible crippling pain in his feet and ankles. His doctor put him on Naprosyn for his inflammation and pain. This seemed to really help him. At his last appointment (Jan 2015) his doctor was very impressed with his improvements and he is now just on the meds as needed.

I think I will end this post here. I just wanted to get on here to say hello and let you all know how the kids were doing health wise. I will try to update again soon on the happenings with the rest of the family and my life. There are a lot of exciting things going on! Hope all of our JRA families are doing great!!

2012-12-07T23:10:00.001-08:00

Just a post to say Thank You to all of the wonderful people that donated to Alex's Alliance for the Jingle Bell Run!!

Eddie and Peggy Kasaba

Anne Kingsbury

The Naglevoort Family

Tricia Kingsbury

Faith Steele

Karen Kingsbury

Luana Wilson

Mike and Stephanie Barnes

Danielle LaCoste

Jennifer Williams

The Lim Family

Shelby Lloyd

The Kane Family

Douglas Gilbert

Justin and Dylan Head

Kim Allen

Carol Gidner

Mr. Cannon

The Rochelle Family

Kathleen Oversmith

Lisa Scott

Barbara Perdue

Cindy Skeber

Noel and Julie Mechelin

Victor Edinian

Tom and Sue Barnes

Sheila Graciano

Margy Lara

Donna Crosby

Carol and David McCall

A special Thank You for all our Alex Alliance team members!

Tom Barnes

Sue Barnes

Peggy Kasaba

Ed Kasaba

Elizabeth Allen

Sarah Braithwaite

Lori Cripps

Sara Cripps

Madi Estrada

Gabie Hanson

Skylar Mason

Monica McDonnough

Emily Sisavath

Chloe Steele

Faith Steele

I also want to give a huge shout out to the Mason Family who are all coming down to Balboa Park and volunteering for the morning! They are great friends of ours and their daughter (Skylar=listed above) is a member of Kierstens scout troop. So, as you can see everyone has really stepped up to help us out! Truly blessed!!

Plus....we are so excited to have my Aunt Anne, cousin Lynne and her girls Courtney and Jessica coming all the way from Tennessee for the event!!

We are so amazed by everyone's support!! This is such an important cause to our family and we love seeing other people getting involved too.

World Arthritis Day!! 2012

2012-10-12T23:03:00.002-07:00

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!

Getting Committed

2012-10-03T09:41:00.001-07:00

No, I don't mean getting committed to the hospital. I mean getting asked to join the San Diego Arthritis Foundation Committee. What does that mean? Well, to be honest I am not sure. What I do know is that this "committee" meets once a month and talks about upcoming AF events. I'm sure there's a lot of planning going on too.

So, to be completely honest when they asked me I recoiled just a bit. "What? You want me? To do what exactly? Will I have the time?". All these questions went on in my head but then I thought about it. There have been so many signs and pushes into this direction. I truly believe everything happens for a reason. It started quite a while ago when the online AF approached me about writing a blog for their site....which I never did. Then my doctor mentioned that I should attend different AF events here and there and never went. Then Alex gets picked by the AF to be their honoree. Then I get the email asking me to make this commitment. What if GOD....yes GOD is trying to tell me something....lead me somewhere. So...I said YES!!! I will join the committee...ha ha!!

The way I look at it, being a volunteer benefits them and myself and our family. When your child suffers from something you feel very alone. Even though my previous post was all about my support system you still feel like no one truly understands......unless they are going through the same thing. I need my old friends to keep my life as normal as possible but I also need new ones to make me feel whole. Over the weekend I had the chance to go to an Arthritis Foundation event. A symposium focused on Juvenile Arthritis. There were about 20 families there. It was so nice to be in a place where I could walk up to just about any of them and talk about our journey and know that they truly understand. It was so comforting.

Being part of this committee will enable me to not only raise awareness but hopefully gain some new life long friendships. Hopefully I can help the foundation with my desire and drive to get the community together and support each other. So yes please....commit me!!!

Team Huddle

2012-09-19T09:30:00.001-07:00

Today it dawned on me how much the statement "there's no I in team" relates to Alex's journey with arthritis. Yes, she is the one with the disease but there are so many there behind her to help us get through it. Let me introduce them to you.....

Family: Yes, of course her dad and I are part of her team and even her brother and sister (sometimes, ha). But let's not forget my parents Sue and Tom. Did you know that it was my dad who drove us down to Children s Hospital and stood beside me as I learned to give Alex her first shot. My mom is always telling me about new things she has learned regarding arthritis and probably Alex's #1 cheerleader! She even offered to call me every Wednesday and Saturday night just to remind me to give Alex her shot! Amazing!

My extended family including my brother Mike and his wife Stephanie, my cousins Tricia, Sue, Lynne, Karen and Eddie and aunts Anne, Peggy and uncle Ed...they have all been so awesome in praying for Alex and keeping updated on her treatment. We love and appreciate them all so much!

Dr. Llona Szer

Doctors & Medical Support: If it wasn't for our Pediatrician, Dr Lauren Choi, suggesting we get a second opinion from a rheumy even after ALL of Alex's tests came back negative we would have never known Alex had arthritis. Or, we would have found out after much more damage was done to her joints!! Our next angel was Dr, Llona Szer (pronounced sher or Cher), Alex's rheumy. Now, we didn't see eye to eye at the beginning and I even left her office in tears once after she yelled at me for not taking things serious enough but boy do I love her now! Not only is she the Director of Pediatric Rheumatology for Children s Hospital, San Diego but also the recipient of many awards and accolades! Alex adores her and I'm pretty sure the feeling is mutual since she is the one who nominated Alex for the Arthritis Foundation Honoree. I'm already dreading the day when Alex has to find an adult rheumy....but I have a feeling we will be in touch with Dr. Szer forever!
Alex's team also includes an Opthomologist, dermatologist, physical therapist, and all the MRI tech's, the ones that draw her blood, the nurses and the appointment makers!

Friends & Co-Workers: As the mom of a child with an autoimmune disease I walk a fine line. One side is living life as if nothing was wrong, all is great in the world. The other is living in the throws of "why me?", "why my daughter", doctors appointments, needles, pills and frustration. I try to live right in the middle. Sometimes I fall over into the dark side and that is where you, my dear friends come in! The friend that sticks out the most in my mind is Michelle Naegelvoort. Michelle and I met when her daughter Alexandra (yes you read that right) and my Alex went to school together in K-1 grades. My Alex left that school to attend one closer. A few years later facebook arrived along with lots of friends I hadn't seen or heard from in years. Michelle was one of them! In fact, except for once in 2005 (i think) we have not seen each other in over 8 years (and she only lives 25 minutes away!). So it turns out her son Dutch also suffers from an autoimmune disorder, so we have a lot in common. Our kids go to some of the same doctors and have been on some of the same meds. It has been amazing to have someone to talk to that has gone through exactly what we are going through and give great advice or just listen! Anyway, our late night chats on fb mean the world to me and someday we will actually get away for our girls trip to Disneyland like we keep talking about!!

I have other friends too that are always there to support and listen! Girl Scout moms, school friends, church friends...the list could go on and on!

Support Groups: Yes, I belong to a support group....sorta. There is a group of amazing moms online (facebook) that I have contact with on a daily basis. The group is specifically for moms of kids with juvenile arthritis. We are always helping each other with advice, comforting when something is going wrong or jumping for joy when a child finally goes into remission! We are from all over the world...some from as far as Australia! I think we would all agree that having this group has been one of the best things that has happened in this journey! Someday we will have to plan a meet up!!

So, as you see I could go on and on. My point in all of this is that Alex could not be going through this alone! Each one of you hold a special position in the team. You may be the play maker ,the star player, the ref or the one on the bench who gets pulled into the game when the going gets tough! I can't thank you all enough! And thank you for being part of Alex's Team! Now it's time to go beat this!!!

September

2012-09-04T12:13:00.002-07:00

Awww Septermber! I love this month.....summer is coming to an end and fall is on the horizon. All the kids start a new year at school with a fresh slate! The crazy thing is that San Diego just started getting warm! We had a very cool "summer" but ever since school has started it has been in the 80's!

Other than that we had a pretty quiet August. Kiersten turned 11 and is having a sleepover this weekend to celebrate with her friends.

I have a weird thing going on....my fingers on my right hand are numb....like all the time. I went to the doc and she is pretty sure I have a pinched nerve in my neck. I have to get an MRI and see what's going on with it.

We have a meeting next week at the Arthritis Foundation to go over the upcoming events. The official Jingle Bell Walk kick off party will be on 9/25 at Road Runner Sports! This will be her first public event so fingers crossed!! Bottom line it will be lots of fun!!!!

Well, that's it for today. Don't forget to go here to sign up for the Jingle Bell Walk!! If you are not local you can always make a donation.....any size counts! You can also search to see if there is a walk in your area and start your own team!! No child should have to deal with arthritis!

Beauty Rest or Extreme Fatigue?

2012-07-30T12:17:00.001-07:00

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!!

Alex's Bio

2012-07-16T10:26:00.002-07:00

We were asked to come up with a bio to send to the Arthritis Foundation to use for a press release and I thought I would share the finished product here.....

Alex Ochoa is a 14 year old ninth grader at Guajome Park Academy. She lives in Oceanside with her parents Pattie and Ben, sister Kiersten and brother Ryan. She loves the internet, her iPod and hanging out with friends. There’s just one thing that sets her apart from other teens, juvenile arthritis.It all started in August of 2010. While out shopping Alex noticed how the cute rings at her favorite store wouldn’t even fit over her knuckles. Concerned by the swelling in her hands her mom made an appointment with her pediatrician.

Her doctor suspected it was Lupus or Arthritis and ordered lab work right away. Even though the labs came back clear her doctor wasn’t convinced and referred her to rheumatologist, Dr. Szer. After an exam and hearing how psoriasis runs on her dad’s side of the family Dr. Szer was convinced Alex had Psoriatic Arthritis and ordered an MRI. Unfortunately the MRI confirmed her suspicion.

Alex started with the medication Methotrexate (MTX). MTX is a mild chemotherapy drug used to suppress the immune system. Due to the dangers of this drug Alex now has to have monthly blood labs done to make sure further damage isn’t being done to her organs. This medicine makes Alex feel very fatigued and nauseas for a day or so after taking it. This is commonly called a "MTX Hangover" in the juvenile arthritis world.

After another MRI showed that the medication wasn’t helping her doctor prescribed Enbrel. Enbrel is an injectable medication that is given to her twice a week by her mom. Many people are becoming more familiar with this medicine due to the commercials featuring PGA golf pro Phil Mickelson. He also suffers from Psoriatic Arthritis like Alex.

After months of being on both medications her most recent MRI is showing a slight improvement. This is a small step but one in the right direction. The goal is to have Alex’s arthritis go into remission. Since there is no cure for arthritis Alex will have it for the rest of her life. But, with the right medication it is possible for her to live symptom free.

Having arthritis has been hard for Alex and the whole family. The hardest part so far for Alex has been the fatigue. There are days when Alex will get home from a long day at school and head straight to bed. Last year she missed over 20 days of school due to illness, doctor appointments or just fatigue.

Her good days are spent acting with her Advanced Drama Group at her school, hanging out with family or friends, catching up on her favorite show Doctor Who and doing art. But without a doubt, anyone that really knows Alex knows her biggest passion is reading.She is hardly without a book and even read the entire Harry Potter series during her 7 week summer break a few years back.

Her parents credit their Christian faith and family in getting them through the tough times. They spent quite a while educating themselves on arthritis and her mom even started a blog (alexarthritis.blogspot.com) to reach other parents out there who are going through the same thing.

The future looks bright for Alex. She is entering her freshman year at high school and hopes to go to art school afterwards. Her lifelong goal is to someday work at Pixar Studios in the animation department.

Being chosen as the Arthritis Foundation Jingle Bell Walk Honoree has been a thrill for Alex and the entire family. She takes this position very serious and looks forward to educating her family and friends on arthritis. She hopes to speak to her classmates, peers and church about arthritis awareness, symptoms to look for and what needs to be done to find better medications and even a cure someday.

She started her team, Alex’s Alliance for the upcoming Jingle Bell Walk and hopes to get at least 50 walkers to join her. Family, friends, neighbors and even her Kindergarten teacher have already stepped up to say they will join her team. She also has aunts and cousins coming all the way from Tennessee to support her on the big day!

The Arthritis Foundation is a wonderful organization that helps bring support and awareness to this awful disease. Working with them has been an honor for the entire Ochoa Family.

2012-07-13T17:04:00.001-07:00

So excited to share some big news with all of you!! Alex was chosen to be this years Arthritis Foundation Jingle Bell Walk- San Diego Honoree!!

We were thrilled when we received an email from the AF asking us to come meet with them. We are not too sure what it will involve for sure but it will be fun!! We have already started a walk team called Alex's Alliance. If you are interested in joining our team you can just go HERE.http://sdjbr.kintera.org/faf/donorReg/donorPledge.asp?ievent=1021954&supId=362173464

We are so happy to bring awareness to Juvenile Arthritis and help people realize that yes kids get arthritis too!

2012-03-05T12:55:00.000-08:00

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

2012-02-08T13:07:00.000-08:00

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.....

2012-02-06T18:49:00.000-08:00

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?

2012-02-03T08:09:00.000-08:00

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

2011-12-04T12:47:00.000-08:00

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!

2011-10-05T18:01:00.000-07:00

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!!!!!

2011-05-03T18:32:00.000-07:00

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!

2011-02-16T12:30:00.000-08:00

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!

2011-01-06T19:54:00.000-08:00

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!!

2010-12-31T09:05:00.000-08:00

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

2010-12-22T09:54:00.000-08:00

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!!

2010-11-03T20:47:00.000-07:00

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.

Super Quick Update

2010-10-20T11:49:00.000-07:00

Alex is on day 8 of recovery today. It was also her first day back to school. I let her sleep in a bit since she has been getting up at about 9 am most days. I also went in and talked to the school nurse about her restrictions and that if she got too tired or in pain to just call me. She has texted me to tell me she is tired but no pain was mentioned. She really did not want to go this morning but I expected that. I wouldn't want to go back either. She has been in heaven (and yes pain) laying in bed watching tv, eating yummy things and getting lots of extra love and attention. Its hard to give that up for school and homework!!

So, now that this is behind us we will be facing her next challenge that unfortunately will never go away. Her Psoriatic Arthritis. There is a lot of the unknown ahead of us but we will get through it just like we did this.

I am still looking to connect with other families with children living with PA. I have several great friends that have kids with JRA and have received some great information from them. It would be nice to kinda know what to expect for her future. So, if anyone is reading this that has a child with PA or was diagnosed as a teen with PA please contact me.

Recovery Going Well...day 4!!

2010-10-16T20:51:00.000-07:00

Alex had her tonsils out on Wednesday (today is Sat) and is doing quite well. I think I had freaked myself out by reading all these horror stories online about recovery being horrible. Now, it did say that days 5-7 can be bad again which will start tomorrow so we shall see.

Overall she is doing great. She has been in bed for the most part and been watching tv non-stop! She has been eating soft foods since day one. Mac and cheese is her favorite, mashed taters, chrushed ice (from Sonic...they sell it there by the bag) and soup. She is also drinking tons of water, apple juice and Gatorade. Oh and lets not forget Popsicles. She has probably had about 15 since Wednesday!!

Today she is mostly complaining about her ears hurting her which is a normal but weird side effect. I guess because the tonsils are so close to her nerves for her ears. She has also complained that it hurts when she talks so she is mostly whispering.

She is still needing Tylenol with codeine at night and for some breakthrough pain. It is almost gone so I will probably call the doctor for more just to be safe. Especially since the doctor said that the pain will get bad again when the scabs start to come off.

Enough of that lovely talk. Thanks everyone for all of your prayers through this. I am just so glad to have it behind us so that we can start to focus on her arthritis.

Tomorrow is the BIG day!!

2010-10-12T11:56:00.000-07:00

Well, we managed to keep Alex healthy in time for her surgery tomorrow. I don't know how. Both Ben and I were down the past week with bronchitis!! We sent her to my parents house for the weekend to keep her away from the germs and it has seemed to have worked!

We are all anxious to get this behind us. I have to say I think I am ten times more nervous about it all than her. Like I have said before....it's not so much the surgery that scares me but the recovery I am worried about. I have heard that it is a very painful and long (7-10 days) recovery. But.....Alex does seem to have a high pain tolerance plus she is 12. Kids seems to bounce back much faster.

I hope to update here daily to let all of you know how she is doing and for any other parents out there that are going through the same thing. Feel free to leave her messages here because she does check this blog. Thanks also to all of you for your prayers and well wishes!

Some Things Dont Go As Planned....

2010-09-29T10:13:00.000-07:00

Well, just 48 hours before Alex's scheduled tonsillectomy she came down with a high fever and swollen tonsils....strep throat again! The surgery was off! It is so frustrating. Having a surgery of any kind is such a mental thing. Preparing myself and Alex for what was to come. We will be rescheduling it soon...maybe even on Monday. The crazy thing is that this is probably the worst case of strep she has ever had. Her throat was so swollen that she couldn't even eat or drink. After a day on antibiotics she is feeling much better and will be back at school tomorrow.

To add to all the craziness I had to have a tooth pulled yesterday under conscious sedation. The tooth had had a root canal and crown about a year ago but somehow it had cracked and an infection got in there. So, they had to pull it in pieces and get some of the roots out of my jaw. I am a bit swollen and sore today but it will be fine in a couple days.

Ben (my husband) left this morning at 4 am for a 5 day business trip to Washington D.C. He works for a dermatologist who does liposuction so he is going to an International Plastic Surgeon Convention. He is one of the exhibitors. He has been working super hard to get it all ready! I am sure he will do great!

That's all for now.....enjoy the rest of your week.