Sunday, February 5, 2012

What's it like?

Very recently there have been many discussions about how this disease is perceived, how people don't understand, and what our kids live with.  This post has been a long time coming, & I really wanted to plan this one out better.  However the time has come that I really need to get this out.

I try very hard to be a positive person.  I feel that God is guiding my life, and we live in that counterbalance of really bad things, then really amazingly wonderful things happen.  My family doesn't really have an in between.  When bad things happen, I KNOW that things will get better soon.  I can't say when exactly or how, but I know that whatever is happening will pass.  Why can I be so positive?  Aside from my great faith in my God, I have gotten used to the stress enough to blunder through it like it's nothing.  This doesn't make our situations less stressful; we just know how to deal better than most.  Also, if it isn't getting my daughter down then I shouldn't let it get me down. This stress is our normal.

Through all of that time that I am busy being positive, I have 2 children now with AutoImmune Arthritis.  My son... not as big of a deal yet (hopefully he'll stay that way!).  Mostly because his journey is just beginning.  His immune system hasn't been as suppressed yet, he only seems to have a little involvement, and we're hoping that his medicine can reverse any damage that's been done.  I'm not saying that it will, but I believe that it can and I hope that it will.

My daughter on the other hand... That child has been given a LOT to deal with.  Arthritis truly is a family affair.  Whatever affects one person will affect the household, and it does.  We pretty much stopped making plans.  We have no idea when she's going to be too sick or in too much pain to go somewhere, even when it's something that she's really been looking forward to.  Most of the time lately that we have made plans, she has ended up in the hospital for one reason or another.  When we do go somewhere, she often is ready to go home shortly after arriving.  She can't be around cigarette smoke, especially now with this stupid chronic sinus infection and her asthma.

While she does hurt still at times, she has gotten used to dealing with the pain.  It's very sad to me that a ten year old can simply adjust to pain, but pain is her reality.

Emily gets sick more often than other kids, and it doesn't just go away for her.  These kids are on immune suppressors, and those immune suppressors work.  Emily is currently on 4 immune suppressors.  (Prednisone and Methotrexate are considered immune suppressors, as well as Remicade and Rituxan.)  The odds of her immune system counts not dipping down too low are slim to none.

Two of those immune suppressors are via IV infusion only.  That means driving two and a half hours each way to get to the hospital where her doctor's are, then staying for as long as it takes for the medicines, which usually totally knock her out that day and the next.  Why do we do it?  Because if it weren't for these amazing medicines, she would always be in her wheelchair in extreme agony with her body attacking itself, with her joints twisting up into deformed poses and her muscles completely withering away.  She would not be able to even write or brush her hair, and she may not be able to talk, eat or even swallow.  Praise the Lord for these meds!  Why do I post pictures of her hospital times?  Because people need to know what these kids go through.  While some people feel that they may need to hide from the world, I don't want my child to feel that she has to hide her disease.  She needs help and support, she needs understanding and empathy.  She is a tiny warrior.  She is stronger than most people can even imagine being.  And she is more brave and courageous than anyone that I know, aside from other sick kids. Just one thing that makes her more brave is that she is willing to tell everyone that she knows that she has arthritis.  She doesn't hide, but she certainly tries to educate.

We worry about what happens if these meds stop working, as many meds aren't labeled for pediatric use.  If something fails at this point, she doesn't have a lot of options. She knows that, but she keeps her faith, she keeps her hopes up.

Some people know how bad she has been.  Even those people haven't seen it like she shows it at home.  The reasons can be found here, in reading the Spoon Theory.  We quite literally have seen her crawling to the bathroom, can't get out of bed, can't walk but later that day there may be some fun event that she doesn't want to miss so she'll "save her spoons".  By saving her spoons, conserving her energy, she may have enough to enjoy some time at the event.  It amazes us.  My favorite was when I broke down in tears talking to her school physical therapist because she couldn't walk or get out of bed, but at a Cub Scout event that night (the night before her 1st appointment with our current rheumies) she was walking around playing games.  I figured they would all think we were lying.  Nope.  Kevin said that people could tell that she wasn't right, but she tried so hard to have fun.  She just saved her spoons for it.  People can't appreciate how much pain these kids can push through, or hide around other people.  They don't want to be different.  They want to be treated equally, with respect.  They want people to understand, which they won't do if they don't see how they suffer.  One of the reasons that I fight for awareness is because I want her to have an easier life as an adult.  I am trying to prepare her future by preparing those around her.  People are so quick to offer empathy for cancer patients, which I totally understand, and am NOT shooting to try to downplay.  However, those same people are the ones that will tell you, "Arthritis?  Thank God it's nothing serious".  They don't realize that there will be no bell signifying the last infusion for our kids.  Maybe one day, but right now that day seems pretty far off.  We make the best of it.  What else can we do?   The truth is, we feel jipped.  No child should have to face daily pain and the threat of disability.  No child should have to worry day to day if they will wake up and be able to walk the next day.  No child should have the constant worry and fear of pain every day, especially those that are in a remission, or if a cold will land them in the hospital.  Remission is kind of scary because you never know when it will end.

Also though, affected child (or children) aside, this affects the siblings.  Maybe it's because you can't afford that trip that you wanted to take or that thing that you told your child you would try to buy, because you need to buy medicine or your sick child has been too sick for you to get out.  I lost track of how many times we were supposed to go somewhere or do something for my oldest but we couldn't because Emily didn't feel well.  Then there's what seems like special treatment to a younger child, but really you have to help the affected child more because they can't do the same things as your well-child. 

And it's not fair to parents that want to enjoy their children, but instead have to watch them suffer.  Most days are good, but we have had some truly heartbreaking days.  We have spent many more days than the average family worrying about how her infusions will go the next day, how her surgeries will go.  And the worrying isn't just one day; I realized that, before she got her port, we had 2 days before her infusions that we would both be a wreck.  She used to scream, kick and cry when it was time for her infusion.  Even more heartbreaking were the days that she could only crawl to the bathroom, when she was too tired to roll over in bed.  You feel sad beyond belief, but also frustrated and angry because your child is suffering and there isn't anything more that you could do about it, aside from what you have already done. 

This is why we take things day by day, and why we count our blessings.  I know that her situation could be worse.  While her case could turn into a terminal case, odds are against it.  (Thank God!)  But it is always possible. At least some of her meds are doing their job.  We hope and pray for remission, then if it is achieved we worry about when it will end.  We wonder how long before she can't get out of bed again. We worry when little things start bugging her, like right now (I guess it's a mini-flare related to her never-ending sinus infection) her back, knees, ankles and wrists have been alternately annoying her.  So we hold our breath, pray and hope.   It was so easy when she was only on Enbrel and Methotrexate.  I miss those days of being blissfully unaware that some cases were worse, and more complicated.  But there are many wonderful things about our current situation.  The key is to being realistic, but keeping hope and faith.  These harder times will pass.  I only hope that this helps someone.


  1. Danielle, this is one of the best blogs I have ever read. You have put into words what parents feel dispite our optimism...I guess it is optimism with a dose of reality...right?!?! I dearly love and admire your entire family and am deeply fortunate and blessed you have entered my life. One of the most positive things that has happened to us since the onset of this horrible disease that tries to steal that positivity from our souls. We will not let it...but it is good to know we have each other...even when our tears take hold, but also through our laughter.

  2. Beautifully heartbreaking Danielle. Big hugs to your two fighters!

    Katie Yeh

  3. You say it so well. I need to be as optimistic as you and your family. I know I am blessed to have your support and advice as we too struggle through this horrible disease. I try to do as you told me and "LET GO and LET GOD".

  4. Danielle, this is absolutely perfect in the wording. Couldn't have said it better. You are a true hero and so are your children! Thank you for being an inspiration to a lot of us. Give the kids a big hug from us.
    Lots a love, Donna, Joey, Cassandra & Ashlyn

  5. This is an excellent look at what kids go through when they have some form of autoimmune arthritis. It's not easy for a kid to grow up with autoimmune arthritis, but when they are adults, they are STRONG. Well, they're strong as kids as well but they're stronger than many other adults. I know from being a kid with JRA what you're going through. When I was dx'ed there were no infusions, even MTX was only used for severe cases. I was not considered a severe case so no MTX, no gold. No DMARD, no prednisone. I was on the studies for both ibuprofen and naproxen (so that tells you how long ago I was dx'ed). Thanks for painting that picture of what life is REALLY like. Too many people do not think that automimmune arthritis is serious. They don't understand that especially if not well treated or even if it is hit with everything that it can be hit with but does not respond, that JRA and other types of autoimmune arthritis can lead to death. It's VERY rare but it's the unfortunate truth that heart disease can be an issue for people with JRA, RA and other types of autoimmune arthritis. I know people get angry with me for mentioning that, but it is a sad reality and the only way to deal with these diseases is to know the full truth, uncomfortable as it may be. I have always said kids are great at adjusting to their illnesses, better than adults adjust to similar diseases even. But I think it is simply that childhood means change and growth even without chronic illness and so with a chronic illness, it just means there is more for a kid to adapt to. But they adapt and they are resilient and strong. I have a 10 yr old who is undx'ed and whose symptoms aren't prevalent enough to even make any hint of a dx. So we continue to treat with rest, ice, heat, ibuprofen. The usual. And I definitely keep an eye on him. If he gets more swelling or other symptoms, I'd be making an appt ASAP. I am fortunate that the dr who dx'ed me, at Riley Hosp. for Children in Indpls, IN is now 2 hrs from me in Charleston, SC. So that is a comfort. But thank you again for this honest look at how autoimmune arthritis can affect kids and their whole family.

  6. Thank you so much for sharing this. A colleague's daughter (7) was just diagnosed with MCTD and while there are some resources for understanding it from a clinical perspective, I had no clue what it was like for a child and her family until I read your blog. Good thoughts to your family and Emily