Saturday, August 29, 2009

Long Time, No Post

This post was written/added to September 6 but most was drafted earlier (thus it posts as last weekend):

We've been busy with the kids' schools and paperwork and new activities, so I've not been writing my own posts. Busy for me is, of course, less busy than it is for other people, but I have to watch so pain levels don't spiral out of control. I've also been helping my son to focus so he can get through violin practice, multiplication facts (eep, he forgot everything), handwriting practice since he takes an hour to write out a few pages and that keeps him from finishing work, and reading about 40-50 pages of fiction on the days he has time (as he needs to do). All that's in addition to regular homework, plus have been trying to guide my daughter through the organizational changes and grooming issues (new earrings, more attention to appearance, a tiny amount of makeup). My friend will be my daughter's volleyball coach this year (yay!, you can bet this will make my life easier), and since she also coaches her other daughter's team who's just a year younger, my daughter can double practice if she wants and has time.

The hip and ischial bursitis is good enough to allow me to do a reasonable amount (most people would not consider being out a few hours without being in total agony a reasonable amount, but I've lowered my standards), though now the arthritis in my shoulders is killing me the same way my hip and SI did late spring/early summer when the changes showed up on x-ray. Go figure. Did a lot of cleaning out of kids' rooms (this involved a lot of me-deciding and everyone else doing) and ebaying (I write up descriptions, he sorts and takes pictures, does the mailing). Appointments. And am exhausted/in pain when I'm not doing something for someone else.

My grandfather is not doing well and so my sister and her children visited for a weekend. His difficulties are maybe to be expected since he's 87, though sad. I've also been dealing with guardianship issues again (another relative wants my uncle with her) and this has been a strain--that's an understatement. I am glad to do what I am asked to do but don't deserve others' anger for being willing to do so. I was called and told to "back down" about his care (it wasn't my idea, though I'm beginning to see why they may have asked me) and again to "back down" when we called to offer my grandfather help in getting to an appointment, told that I wasn't his daughter (this from another relative, not him). He had missed his last one because he was too ill and tired, though it was an important one. My sister was also called and told not to come by this relative, which left her in tears. She did come, and it was good to see her.

So I've not disappeared, but have just been busy.

We also have a small stack of referrals for my son. The little guy went to the new pediatrician on CHIP recently. Instead of nodding over hypothesized connections between my issues and his when taking his history, about his heel pain and back pain and headaches, she put out some effort. She had him take off his shirt and, so that she didn't have to tell us directly, asked us if his shoulders looked level. No. Obvious problem. His right foot also turns out some when he walks, which she noticed and we hadn't. This is new and could account for the heel pain. He'll see the Shriner's hospital for scoliosis (he had an x-ray already), podiatrist for the heel pain (we went last week but the doctor's daughter was in labor!, reschedule), may have to return to the PCP based on podiatry appointment for an additional rheumatology referral at the Shriner's hospital. Plus he has an upcoming 6-month visit with the autism specialist and new visits with a new OT due to the change to CHIP (including another long assessment, siggggghhh, exhausting, missed school) and should be in the autistic spectrum social group at the university. I really hope his scoliosis is minor and stays minor, that all we need to do is monitor it, that the heel pain and headaches are just normal childhood issues or within the range of normal anyway. I'm feeling sick from the stress of all these appointments given our challenge getting through our daily lives but for now have temporarily pushed down my fears that he will have some of the same problems I do. I just want things to be easier for my kids. I really don't like seeing pain on his face. I'm hoping the right shoe insert or support will relieve the foot pain and maybe in turn some of the back pain. The Shriner's appointment is in December--they do take a while, and maybe some of these others will be out of the way soon. Really, he could stand to have his tonsils out, and I should have had done it right about the time I got my scooter and was struggling; my husband would take him to urgent care for strep throats since that was fast and we could sign in at home rather than wait at the clinic. He's already been sick this school year again and people are commenting on how easily he gets respiratory infections. Scccrrrrrreeeeeaaaaam. I think that just may need to wait right now. Christmas break after seeing how he does this semester?

When my pain medicine was refilled this week, the rheumatologist's office called since it's been a while since I've been in to schedule an appointment. Hahahaha, yeah, lots of time and energy to take care of myself.

I am worrying about my son missing school for some appointments (some of these places assign times, take it or leave it, absolutely). At least the appointments will be near free, but really, does he need to be missing "kid time" to go to OT and to the social program for autistic kids at the university (which would mean leaving school early)? And getting behind on homework and missing activities for appointments after school? I guess this is something I can bring up at the autism appointment. I want to maximize his success but don't want him to suffer to get there or to have academic problems from missing school time. What a catch-22!

My only positive memory from the Shriner's hospital (though the incident horrified me as a teen, it makes me laugh now) is that of a young visiting German doctor asking my mother if my sister and I were heterozygotes or homozygotes. My mother, misunderstanding, lit into the doctor. The doctor did not know the English "fraternal" or "identical," and my mother had not had much biology. Oddly enough, that's because she was in high school a half day on hardship so she could care for her siblings while my grandmother took my uncle to the Shriner's hospital. Anyway. When I had to go, which wasn't often, I hated going, hated missing school, always felt too old for pediatrics and thus felt really embarrassed, hated the exercises which my parents made me do at home when I wanted to do my schoolwork, and was always uncomfortable there and felt under the microscope, good as the care is. Ah, grumpy pre-teens and teens.

My son's teacher did lighten all of his materials at school so he doesn't have to carry heavy items and books class to class (at the GT school, he changes every class, and they typically carry two heavy books around all day plus all of their supplies--not just pens and pencils--and some spirals/workbooks in a plastic tub). So a lot of his materials will be kept in the classes. His violin weights 7.0 pounds with the case, so we may still have trouble keeping everything light enough for him. Extra textbooks will be kept for him here at home, so no trekking back and forth with the math book.

My cousin has arachnoiditis, not ankylosing spondylitis. So she definitely knows about pain issues. Haven't talked to her yet. But I did talk to another disability blogger on the phone--that made my Friday! And I've spent lots of time with family, some of it just watching movies or talking, but that's been good. My mom bought a copy of Jodi Picoult's book about OI for me at a used bookstore, so I'm finally reading through that.

1 comment:

yanub said...

I don't know how I managed to miss your post. And here I was just wondering how long a break you would be taking!

The worry and sorrow over children's pain is unrelenting, isn't it? I always fretted that I was making the wrong choices. At least you have good doctors and an excellent children's hospital to help you out. That right there is a great bit of fortune.