The Super-Magnificent, Splendiferous 100th Post!!!

OK… It’s not all that spectacular, really.  But in honor of this 100th post, I thought I would take a look back at where we were when I first started this blog, in September of 2009, and compare it to where we are today.  Because it’s been a fairly phenomenal few years….

THEN- Caitlin was flaring, after her first hip replacement surgery.  We were back on MTX, Naprosyn and had done a couple of prednisone pulses.  Our next biologic, Actemra, was in the future…

NOW- Caitlin has been off all medications for almost 18 months.  Our last biologic was indeed Actemra, and her last dose was in October of 2011.  There aren’t really enough jazzy adjectives for “Happy” and “Thrilled” to describe this….

THEN- Caitlin was just starting middle school.  We had major concerns about her locker, whether she would be able to carry books, whether she would be able to keep up with writing.  She often tried to stay home from school simply because she wanted to avoid P.E. – even though we had accommodations in place.  I had to drag her out of bed in the morning, and nudge her to the shower so she could soak in the hot water and get moving.  She was shy and intimidated by the 1000 students at the school – and often ate lunch in the counselor’s office.

NOW- She is up before me every week day, by her own choice.  No morning hot shower necessary, before she has the hair straightener (or wand, depending on the hair mood of the day) plugged in.  She is almost through the first year at high school and very much looks forward to every day, among the 3200 students.  She has a tight group of friends, but is not afraid of meeting new people.  Although we opted for no P.E. this year, she is auditioning for Dance next year and is looking forward to it. If I had been able to look into a crystal ball four years ago, I would have not have believed the vision she has become.

THEN- Pain was still very much a part of her daily existence, and it manifested in hard to manage anxiety.

NOW- She has not taken vicodin more than a year.  And while she still is learning to balance what she wants to do, with what she should do and can do…. and learning to manage a high school work load…. she has the reigns. Anxiety does not control her…. she is the master.

THEN-  Caitlin was still playing softball…

NOW- She made the difficult decision to quit when the competitive level surpassed her abilities and the game stopped being fun.  As we prepped for the second hip surgery, she made the difficult decision to step down – and we have never regretted it. Though I do think she sometimes tires of the fact that both of her little brothers play baseball and we are at the ball park several days a week in the spring…. Now she chooses to come sometimes, and not others.

THEN- We had a hip replacement surgery ahead of us… we just weren’t sure when.  She ended up having her right hip replaced in November of 2010.  While it wasn’t as smooth as the first surgery, she recovered very well.  Ultimately, she ended up with about a 1cm leg length differential….

NOW- We have a hip replacement surgery ahead of us again, and we just aren’t sure when.  We saw the surgeon last February because she was having pain in her left hip.  He said that the x-rays showed some micro-movement of the acetabulum cup implant.  The pain subsided – and then returned again this new year. The x-rays show some slight progression of that loosening.  We know we will need to revise that hip – she has grown 9 inches and gained 30 lbs since that first surgery.  Fortunately, the spike in her femur is holding- so we won’t need to mess with that. As long as she is not in pain, and that loosening does not progress to the point of damaging the bone, we are not in a hurry to be under the knife again!  I think we’ll probably be seeking an opinion out-of-state, at a specialty hospital that is the leader in pediatric ortho surgery…

THEN – Though very mature for her age, she was a little girl.IMG_2436

NOW- She is a lovely young woman.

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And that little guy was only six months old when I started this blog… he just turned four last week:)

THEN - I was researching the best backpacks for school – hoping to find the magic combination of ergonomically supportive, yet still acceptably cool.

NOW – I’m starting to research cars, wondering what is not only safe and economical…. but what features might be useful for somebody who is flaring. What things will help her when arthritis rears its ugly head?  Learner’s permit coming in six short months!!

THEN- We were planning on how to get through the week… or the month. We saw the doctor every few weeks, and the calendar squares were filled with lab tests, specialists, and notes about medications.

NOW- We are planning on how to walk the path to college. The calendar in her room counts down how many days to the One Direction Concert.

THEN- We were praying desperately for a cure.

NOW – Ditto.  Except, I think we are also splitting our energy with an emphasis more on how to live well now.  We are twelve years into this journey… and we really couldn’t spend that entire childhood waiting to live.  I know that’s easy to say from a point of remission – but I am not naïve enough to think that she is done with all the crap that this disease brings.  I know she isn’t.  It will be back, with all of its ugly challenges.  But every great experience we have had, all the things we have learned, all the inspirational people we have met, all of the silver linings that have come because of arthritis – they will all serve to push her over that next mountain when it comes.

We’ve had remarkable experiences over the past few years – and many of the blessings have come to our family BECAUSE of arthritis. I started out comparing this to a roller coaster – and I have often called it a war. It is those things…. but it is our life… and it has made us who we are as a family.

THEN – I was a JIA mom, just trying to write about our experience – as a therapy for myself, and hopefully as a record that might help somebody else.  It was a catharsis, not a commercial. An outlet, not a job.  Opinion, not law.

NOW- Ditto.  Because, though most people don’t know this – a diagnosis of JIA does not change.  As she gets to be an adult, Caitlin may tell people she has RA simply for ease of understanding –  but in reality she will always have systemic juvenile (onset) idiopathic arthritis.  And thus, I will always be a JIAmom, as long as I live and breathe.

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Thank you for being there with me!

This entry was posted in Actemra - Tocilizumab, Anxiety, Awareness / Advocacy, Education, Family, Overcoming obstacles, Remission, Surgery, Uncategorized. Bookmark the permalink.

2 Responses to The Super-Magnificent, Splendiferous 100th Post!!!

  1. Sophie Levindoski says:

    Hi Colleen,
    I was so happy to find your blog, and to hear how well Caitlin is doing! While we have never met, I spent quite a bit of time on the Arthritis Foundation website communicating with the parents there. You were always my inspiration. We both had/have young girls struggling with this disease with no end in sight. You always held it together and sought out the best care for your daughter.

    Lindsay is still medicated, but doing very well. She had an achilles tendon injury, unrelated to her arthritis that has set her back, but NO flare ups in quite some time.

    Take care.
    Sophie

  2. ~Mariah~ says:

    So much love to you both!! ~;o)

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