Growing Up

As my own children are getting older, transitioning from kids teens, I have been watching them grow and change.

I know that soon they will transition to young adulthood, and take on an even greater role in the management of their own disease. Its part of growing up, and I know that day is coming, but….

It really scares me!

Like everything else in life, much of this fear is due to the unknown. As a result, I have been working to educate myself of how to make this transition as smooth as possible. I want to know how to empower my children and make sure that when I hand over the reins for their health care that the change will be seamless. Tall order, I know.

The best way to attain that goal, in my opinion is to find out how those before me have done it with some level of success. I had the pleasure of “speaking” with many young adults at the JA conference last summer, and I have also been lucky enough to meet some adults around my age who grew up with JA. The insight they provide is invaluable. These are the folks who have “been there, done that” and know what works (and what doesn’t.)  They are the ones who have gone through the transition from pediatric care to adult care already. They have had the torch passed to them, and handled the change years before I will attempt it with my own kids. They hold an amazing wealth of information.

A few weeks ago, I introduced you to Lene Andersen, who was kind enough to tell us about her experiences  growing up as a child with JA. This week, I want to introduce you to Melissa, another adult who knows all about growing up with JA, and let her tell you all about her transition to self care that occurred after she left for college.

melissa

 

I was diagnosed with Juvenile Chronic Arthritis (yes, I’m that old) at two in 1972. That was before they changed the name to JIA, and they used to treat it with A LOT of aspirin. I spent most of my childhood in and out of flares that would last for a few months and then slowly slide away to hibernate until next time. Doctors said my disease was mild, and I feel lucky to still own all my original equipment (though quite a bit of it has been fused together).

melissayoung

For the most part, living with JA made me different because I sat out of gym or I was trying a “gluten free” diet way before it was popular. The thing that set me apart most was doctor appointments and needles.

My life was pretty sheltered to make sure that I didn’t hurt myself further, no roller skating, no skateboarding, no water skiing. By the time I reached 18, it was time for college and you can imagine that I was pretty happy to have some freedom. I chose to go to college about an hour away from home and went about the business of moving out and making my first decisions on my own about how to live my life. I was a pretty average student but the college had taken me on academic probation due to middle of the road grades. The first two months I worked hard, attended classes, worked with a tutor and still struggled (I took Philosophy my first semester, what was I thinking) but I was managing for the first time on my own.

One day walking back to the dorms from Chapel, I fell. It happened so quickly that I didn’t even have time to think, I put out my elbow to break my fall so I wouldn’t hit my face and then hit the ground. Fast forward ten minutes later and I was leaving campus in an ambulance. Not because I was hurt badly, but because I was the girl with JA.

I can still remember being back in the ER, sitting there at 18 wondering how in the world I could do this without my parents.  The doctor suspected I had torn my rotator cuff, gave me a sling and said it was no big deal.  A friend from school drove me back to the dorm and I called my parents.  The next thing I knew, my parents were pulling me out of school for a week to see an orthopedic surgeon. It hadn’t occurred to me that my parents would take me out of school for an injury. Academically I couldn’t afford to miss a class much less a week of them. I had my resident assistant (RA) try to reason with my parents but they wouldn’t listen. They came and picked me up that night. My RA did talk to my teachers and let them know what was going on.

I saw the orthopedic surgeon who started with conservative treatment and prescribed 6 weeks of PT 3x  a week. For a “normal kid” without JA they would have taken an X-ray and sent me home with a prescription for NSAID’s but because of the JA they wanted to keep a close eye on it. So if you’re keeping track, I’ve got a suspected rotator cuff tear, a sling I would need to wear 24/7 and physical therapy, three times a week on top of a full load of classes while I was on academic probation.

I remember standing in the shower my first day back at school, my right arm by my side, unable to use my hand to wash my hair wondering how I was going to do this. Not only could I not wash my hair, I couldn’t feed myself, or write.

So how did I handle it? I took it one hour, one class, one meal and one physical therapy session at a time.  No one told me that I couldn’t do it or that it was an extremely difficult situation. I had been adapting to difficulties all of my life, I had to find different ways to get things done.

One of the biggest hurdles with JA is learning to cope with the unexpected and pretty much everything about JA is unexpected, we learn to cope in a different way than other teens do.  I knew standing there in that shower that things were not going to be easy but I didn’t call home and say come and get me what I did was adapt. I washed left handed, I ate left handed and I borrowed notes from my classmates.

I’m proud to say that I did manage to finish physical therapy and I received a clean bill of health,  I also learned that I needed to communicate with my parents about my grades and how hard I was working to keep them up. It was also an eye opener for me to see how having JA affected my parents, after dealing with my health throughout my childhood, they were not about to stop and have a “no big deal” attitude just because I was now moving into adulthood. After sitting in that ER room wondering what I was doing there by myself, I took an active role in my health. This was quite a good thing because  6 months later I found myself in a similar situation and it wasn’t quite as difficult to deal with that time.

Unfortunately, the time spent away from classes and the inability to write decent notes did cause me to struggle and my grades to drop. I didn’t go back the next semester, which turned out to be a blessing because I went into a major flare that consumed most of my time for the next 6 months. If there is one bit of advice I might share with you, it would be to expect college to take longer than the average 4 years, and build in time for unexpected medical issues!

With chronic illness you must expect the unexpected, how you chose to deal with it then becomes your choice. Good Luck and Happy Adapting!

 

Melissa is mom to one beautiful daughter, and is the author of the blog “RheumaGram-Letters to My RA

 

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Comments:

  1. Your blog is such a great resource for families! I stumbled upon this post and found it very appropriate. I just started my own blog about this transition from child with JRA (i was diagnosed at 13 months, 27 years ago) to “adult.” However, the independence in management of my disease as a young adult led me to develop skills beyond living with JRA such as maturity, confidence and even choosing a career path in health care. I hope you will check out my blog and find it helpful as well!

    • Thank you for stopping in, and for taking time to comment! I believe that at the worst of times with this illness, we found that accepting the “gifts” from being in such an awful position was the only thing that saved our sanity. Both my kids are stable and doing well now, and I think that they would agree- its too depressing just to look at the suffering that a child has to endure, without trying to glean a meaningful purpose or something positive that came out of that course of events. Like you, my teens developed maturity beyond their years, confidence, and a persistence in attaining their goals (that others said would be impossible) as a result of going through those hard times with JA. I definitely will check out your blog as well!

  2. Thank you for this! I have realized lately that I need to stop s-“mothering” and letting my Emily do things in her own more. My Zach… I’ve never really done that with him. I worry a lot about when they leave home, how they will cope, what their doctors will be like. In fact, they are why I went back to school. If I am in the field maybe their docs will listen better to me, right? (One can hope!)

    Anyway, thank you. I needed this today. I shed a couple of tears for you, a couple for their future selves, & now I am ready to take on the world!
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