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Wednesday, April 30, 2014

Restless Legs, Restless Mind

D's at work and we were touching base like we always do. I mentioned how my ADHD is really bothering me and how much I was looking forward to trying a new medication, and he told me that my restless legs syndrome has been severe. It struck me that the restless legs are a physical representation of my restless mind. Though my mind may slow down when I sleep (it never stops, though, as I have vivid, weird dreams all night), my body becomes more active against my will, causing me to thrash around most of the night.

To cope with other worsening neurological symptoms, I've switched temporarily to a liquid/soft foods diet, increased my use of moistening agents for my eyes, and increased my water intake. As much as I'm miserable with my symptoms, I am hopeful because I know that appropriate medication can improve my symptoms dramatically. I'm hopeful that a stimulant will work as the Strattera did and that it won't "poop out".

Wednesday, April 23, 2014

Time Flies & is Unpredictable

I've missed posting, as sporadic as it's been.

I was right in January - the Strattera was indeed "pooping out", as doctors so elegantly term when a medication's efficacy declines to the point it is no longer therapeutic. I decided in February to give it another chance and remained at 80mg - after all, ADHDers are not renowned for patience, and I felt worse as I decreased the dosage. A month later, D told me that the medication was no longer working - I can't sit still, I'm constantly on the go, I am incredibly impatient and quick to snap. I suppose because the decline was gradual I didn't notice how bad my ADHD had become again. I saw the dr last week and cried in frustration. I go back in two weeks - in the meantime, I'm tapering off. This week it's 50, next week 25. Then we are going to try a stimulant. I think that pointing out to her that other neurological issues have worsened as my ADHD has worsened - the delayed gastric emptying, orthostatic hypotension, restless legs - convinced her that a stimulant would be appropriate at this point.

In the meantime, I am so frustrated. I'm forgetting major things and making silly, careless mistakes. I forgot that my babysitter had jury duty. I read B's school calendar in a hurry and thought he had school on a day he was off. My hair was greasy for over a week because I was using conditioner instead of shampoo. It's many things like this daily - and the sharp decline in sleep quality as my restless legs syndrome worsens - that make me feel impatient to try a new medication.

However, I have been working really hard to organize EVERYTHING - my home, my classroom, my life. It takes more effort and time for me, but I am determined. I feel and even think better when my environment is orderly. I spent most of my spring break organizing at home and poring through new work material when I wasn't with the kids.

In addition to the ADHD issue, I was stricken recently with human parvovirus B19 (fifth disease). I caught it from B and was really ill. My rheumatologist fortunately tested me for it as well as lupus, because I was displaying many symptoms of a lupus flare (he tests me for lupus occasionally anyway, as I have some symptoms more indicative of lupus than Sjogren's syndrome). I still have arthritis in most of my joints, but it's no longer so bad. I'm also no longer experiencing the facial flushing or rashes all over. Initial blood work tested positive for anti dsDNA antibodies, but subsequent testing was negative, so no lupus. I was really frightened at the thought of lupus - it usually has more serious complications than Sjogren's. My children are so little. Even though I don't have lupus, this is the first time my blood has tested positive for ANY autoimmune markers. I've been dreading this - my last rheumatologist (an excellent doctor) told me that my blood would be negative for markers indicative of autoimmune illness until some major event triggered positive results. This virus appears to be that trigger. From this point on, I need to be even more vigilant. The recovery hasn't been so easy. Something as simple as cutting coupons can cause an arthritis flare in my hands, which seem to be the most affected.

Even though it hasn't been an easy fall/winter/spring, it is SO much better than last year. We are overall much healthier. B got glasses for his astigmatism. He's not crazy about them, but he wears them all day at school and we're working on improving compliance at home. Other than asthma flares, he's been pretty healthy. His speech is remarkably fluent and he still enjoys school. His CSPE annual meeting is next month. We're hoping to keep him in school through the summer, as he displays significant regression after breaks. He currently loves Hooked on Phonics on his iPad and even reads some words now. We need to read more to him - I hope that he develops the same love of reading that I have always had. B is growing into his role as big brother nicely, chiding D when necessary ("You say sorry to Daddy right now!), guiding her, playing with her, and every once in a while still giving her a push or a smack. Overall, he enjoys her company. He is such a sweet and smart little boy, though he is in a testing phase. Firm boundaries and choices when possible help, along with a lot of love.

D is doing well also, and it's such a pleasure to get to know her as her language skills rapidly grow. She and B are such different children, and I enjoy their differences. She knows exactly what she wants and she is SO stubborn. But she's so sweet, too, and spring break was nice because I had some bonding time with her. I had so much more alone time with B than with her when they were babies. If B attends school this summer, I'd like to take a swimming class with D. We are definitely going to butt heads, but I think we understand each other in a way other people don't. We are a lot alike. I can't live her life for her, but I hope my wisdom through experience can help me help her avoid some of the major bumps in the road I've faced.