Worry, Worry, Worry

 

Worry, worry, worry.

worry

 

I’ve been doing a lot of that lately, which is something I always try hard NOT to do.

In my book, Living With Juvenile Arthritis: A Parent’s Guide I talked about the pitfalls of giving into worry, and how it can be counter productive.

Just because I know this, doesn’t mean I don’t give in from time to time. It doesn’t mean that circumstances don’t provide the perfect environment for my mind to wander. I know I shouldn’t, I try not to, but sometimes the worry wins.

This was one of those weeks.

We were elated to find out that my son was approved to start a new biologic medication. He had been getting progressively worse for a while, and we didn’t have many options. We had also been waiting for some time to see if he would qualify, as the new med is not FDA approved for children. When the word came down that he finally was approved, we were excited, we were hopeful, we were ready!  Its amazing what you are willing to do when your child is hurting, sick, dejected and getting worse daily, right in front of your eyes. We wanted to get approval from this drug, but at the same time, it’s not FDA approved for kids, so…… worry, worry, worry.

Have you ever read the patient insert for your own prescription medication?

(worry, worry, worry. What have I done?)

Here’s an excerpt from his: (for his privacy, I have replaced the drug name with xxx)

Some people have serious infections while taking xxx, including tuberculosis (TB), and infections caused by bacteria, fungi, or viruses that can spread throughout the body. Some people have died from these infections.

It is not known if xxx is safe and effective in children.

xxx may increase your risk of certain cancers by changing the way your immune system works. Lymphoma and other cancers can happen in patients taking xxx.

Some people taking xxx get tears in their stomach or intestine. This happens most often in people who also take nonsteroidal anti-inflammatory drugs (NSAIDs), corticosteroids, or methotrexate. Tell your healthcare provider right away if you have fever and stomach-area pain that does not go away, and a change in your bowel habits.

I know most of the patient inserts are scary if you really read through them (even for things like tylenol, but geez lou-eeze! )

Worry, worry, worry.

Enter in guilt. Am I making the right decision for him? Am I subjecting him to too many risks? Is this the right thing? After a horrible flare, culminating in significant pain, rash, high fevers and other symptoms that may lead to permanent damage, I think yes… it’s what he wanted, but still…. (worry)

Three days in, things are looking good. This is one of the few biologics that work at full strength after just a few days. In just a matter of 72 hours, we were seeing very little rash, no fever,  and all the swelling was gone.  Also gone, the redness and heat over the joints. Pain levels were already  down by half. We were all sleeping through the night. So far, so good.

Day 4- worry starts to creep back in. Morning stiffness is still there, but we thought he would be over the extreme fatigue by now. He is sleeping 15-17 hours out of every 24. Is that normal? I email the rheumy because I worry. I get a note back  that fatigue is ok, as his body may just be recovering from the release of all those high pain levels BUT he needs to be watched closely for signs of allergic reaction for 3-6 MONTHS after his initial dose.

Gulp. (worry)

Day 5 and his stomach hurts. Bad. He starts to vomit, and is doubled over in pain.It starts in the middle of the night, I’m thinking about this warning:

Some people taking xxx get tears in their stomach or intestine. This happens most often in people who also take nonsteroidal anti-inflammatory drugs (NSAIDs), corticosteroids, or methotrexate. Tell your healthcare provider right away if you have fever and stomach-area pain

He does have pain, and he IS taking NSAIDS. Another email to the doc, (worry) and directions to watch him for a day or two because all those clinic visits mean that he *could* have picked up a virus with fortuitous timing. (worry)

Do you see a pattern here?

I know I shouldn’t, I know it’s counterproductive. Worry wont change anything except my stress level. Actually, it can make things a little worse because it might hinder my objective observation of his true condition, since I am worrying about seeing the issues stated in the patient insert. I try VERY hard not to project them.

So I reel myself in. I actually pray for my son to be sick- that is I pray that he is sick with the stomach flu because the alternative is 1000x worse. I let it go, but I remain vigilant watching him for other issues. He has a swollen lymph node. That’s good right? More chance that its his “just” being sick. He has a horrible headache (not in the insert so more evidence of a bug!) Of course its the weekend or I would run him by the pediatrician. Funny how at times like now we notice every little thing. Worry? No. Worry? NO!  It’s a battle in my brain. My son trusts me to take care of him and make the right decisions for him. I feel about 500 pounds heavier today, with all the weight on my shoulders, but then…

Pray-Hope-Dont-Worry

Sunday morning, he wakes up at 4:30 am- ready to go to the one day football skills camp we planned for months ago. It’s an hour an a half from our house and starts at 7 am. He is stiff, but ready to go. No more headache, no more upset stomach or stomach pain. It WAS a 24 hour bug. Whew. (and just to erase any lingering worry, I know it was a bug because I have it today)

He goes to the camp, he does VERY well. For the first time in 2 months, he is able to stand up longer than 15 minutes without experiencing excruciating pain. The same kid that couldn’t walk the distance from the  parking lot to the mall is now able to participate in an athletic event that required his being on the field for FOUR hours, in 8-20 degree weather. I would have cried, but it was so cold the tears would have frozen on my face. The drug is working. My kid is getting his life back. He may “pay” for it today, but for 8 hours, he.was.there. All in. Doing it. It was the shot in the arm he needed, to know maybe there is a light at the end of the tunnel again.

My son (far right) throwing the football during warmups.

My son (far right) throwing the football during warmups.

 

Move over worry. I’m making room for hope.

 

 

 

 

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Comments:

  1. I have a General Anxiety Disorder so I worry all the time. It sucks.
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