As A and O are kids plagued with anxiety, it’s not a shock we’ve seen a huge uptick in behavioral symptoms from temper tantrums to inability to stay in bed again to potty issues to… as they go through a period of their life filled with huge changes at the beginning of this school year.. At age 7 and 8, I thought we would be beyond many of these issues but dealing with them is where we are. As we remind them how they know what they should do, it becomes obvious they just aren’t at a point emotionally where they are even processing what is wrong. There is simply too much going on, and all of it is frustrating. One of the things we have initiated is to ask them every night before bed to name at least one fear they had during the day. Our hope is in its naming either they can take control of it or we can for them once we know it. There is a power that comes from the articulation of ones fears.
When it comes to me, I find such thoughts small solace reading this past week how questionable the use of steroids are for MS patients who have flares: steroid study . Great, it may seem odd to worry about such things as I have gone a relatively long period without a flare. Still, I keep reading conflicting studies about MS rebound post Tysabri. It seems every set of numbers released gives me worse odds than the numbers released prior. Therefore, I keep track of Tysabri numbers and the possible treatments likely to follow it should I stop taking Tysabri.
It would be nice to think there was a point to the metal tasting emotional roller coaster rides I have had taking steroids in the past or might take again. I always hoped they shortened my relapses. Maybe they did. Still, this study seems to suggest we end up with the same new baseline whether we take them or not. The only difference is arriving at the new baseline 2 weeks earlier with steroids. I note so much is still unknown. Originally, I never thought to ask if they left me in a “better” place than had I not taken them. Now with the new information saying 2 weeks earlier, it still does not say I will be at my worst for 2 weeks longer or shorter depending on my choice. Where is the delay/improvement taking place in the healing cycle, at the beginning or the end when I am mostly better?
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My second big MS fear was articulated in the same blog (different post), brain training. The writer wants MS listed as a “preventable dementia.” Great, while I know it is not his intention to lay blame at the patients’ feet, it certainly sounds that way when we start calling anything “preventable.” I recognize the author means “preventable” as a way to encourage doctors and patients to start immediately to do what they can to slow down the progress of MS through strong disease modifying drugs or therapies. I just hate thinking I have dementia even as my rework rate (amount of time checking and correcting simple tasks I attempt) skyrockets these past few weeks. I know J sees it in me. This just seems another way to label MS patients with too broad a brush stroke for my tastes. I will also admit much of my resistance to these terms originates from my fear of growing less knowledgeable rather than more. I find it scary to think I may have reached the point where I will lose more knowledge faster than I am capable of gaining.
Now the article and study did point out training our brains helps. I hope so. I blog in hope of better training my mind. It’s an exercise is summing up life as I and my family experience it, making the good better, the bad less bad, and the fears more tolerable.
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On the fun side, our family went to a horse jumping competition over the weekend. Naturally, the first rider fell off and had to be taken away in an ambulance. This did not do wonders for A’s anxiety as she loves riding horses. Thankfully, the rest of the show went off well, and we sat next to a woman who had been jumping horses for the past 20 years who explained what each rider and horse was doing as they went through the course. I think that time alone was probably worth the admission for A. We also got to tour an old car show happening on the fair grounds at the same time. It is not every day we get to see old legends like Ford’s from the 1920’s, back when business leaders sought to price their goods and wages to make all workers able to buy what they have a hand in making. I kept looking at the car less as a peace of automotive history and more as a peace of the economic history that promoted the strength of American consumerism.
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