Lily is having a hard time with seizures, and now that I’m living so nearby, I’m becoming a little obsessed with finding answers. You know I’m a scientist. I know how to find and read research papers. I am not finding what I need on PubMed, though…yet. I am also feeling mild withdrawal from my favorite databases, as this is the first semester that I haven’t been working for a place that got me that access since I started college.
The help I want: guidance with primary/review papers – firsthand accounts from people with epilepsy who have used hormonal birth control at the same time – firsthand accounts from people who have epilepsy that affects sensation and muscular spasm in their faces/mouths. Maybe also people with epilepsy who can tell me about sensations that make it difficult/impossible to tolerate the sensation of wearing a shirt.
Let’s get to the details. Lily is on Depo shots, and spotting most of the time. We don’t have good data on the seizure intensity correlating with the spotting/flow intensity, but I am increasingly convinced we’d find it if I got the staff to record the spotting. Her teachers told us that most of their female students with epilepsy started having problems when they hit puberty; one of the main reasons I distrust Lily’s neuro is that he didn’t believe this, even when I sent a clipping with my parents from the NY Times‘ science page. But there’s definitely work out there on catamenial epilepsy.
The ketogenic diet seems to have gotten her to only having seizures between 5pm and 9pm (mostly 6-7, with some variation). We fear that her 9pm meds get her through the night okay because her body slows down, but her 9am meds aren’t lasting because her body revs up. If this theory is at all plausible, it overlaps the possibility of the menstruation-related metabolic shifts that seem to be a known thing.
I want her off Depo. I’m on Seasonique, successfully, so I know there are options. I want that to be the answer – to settle down the metabolic waves, in hopes that the keto diet plus meds then prevents the use of rescue meds. It’s so great that there are fewer seizures – but the ones that happen are incredibly disruptive and really, really different (facial, possibly involving respiration, probably involving tingling skin, probably causing anxiety or panic).
Do you have advice on either how to help communicate this to her neuro, or how to find readings on PubMed? Or just tell me it’ll be okay…
You’d think after growing up in the disability community I’d know something about the way United States law deals with disability. Yeaaaahhhh…no. Here’s what I want to share: the Family and Medical Leave Act is a piece of legislation enacted to protect people with disabilities from employer punishment when we have to miss work for medical reasons.
What I learned today: it’s not just about pregnancy, or needing to be out of work for weeks to months, although it covers both of those. It also covers situations like mine! (And it covers: caring for a sick close relative, adopting or fostering a child, if an immediate family member is called up for active duty with the army/National Guard, or to care for a relative who is a veteran.)
The three options I now know exist: (1) Continuous leave, (2) Intermittent leave, (3) Reduced work schedule
So I’m probably going to file an intermittent FMLA form, and the doctor’s form that goes along with it. That means if there’s a day when my nausea, vertigo, and light sensitivity are so bad that leaving my apartment or looking at my computer screen would be impossible, I can call in a day off. I can either use my vacation days in combination with this, so I get paid for that day, or I can just take an unpaid day. If I have another bad situation like my recent ulcer diagnosis, and I want a couple of days in a row off to deal with the side effects of the medication (eight pills a day, yuck!), I can do that.
I can’t tell you how much this helps me! I LOVE my job. I HATE that there are days when fibro makes it painful or difficult to *do* my job.
My boss is great, and is as human in his understanding as possible, but now I have a way to take a day off and not have to tell him the gory details of why I can’t come in. The human resources/benefits office can tell my department that I’ve got approved medical paperwork on file, so I don’t have to tell anyone about any of my diagnoses. Bonus: I learned that there’s an environmental safety office that can do an assessment of my workspace, and they may be able to help me get the kind of desk chair my rheumatologist wants me to use to minimize back, arm, and leg joint pain, which will let me work the hours I prefer (in science, we normally work more than the full-time standard of 40 hours a week), and will help me be more effective while I work. (Why, yes, my shoulder is distractingly painful today, and my lower back is making matters worse.)
I only wish I’d known this sooner. It would have been nice not to feel guilty about staying home for a couple of days because I was throwing up or otherwise rejecting food so much I was dizzy and weak.
Short post to signal boost a couple of things you can do for yourself or people you know to make life easier!
The Mac operating system has some great accessibility features. One of my favorites is the ability to reverse black and white – when I have really bad headaches (mostly of the migraine variety), this color reversal makes it less stressful to physically look at my computer. (I’ve tested: this can happen on the iPad, too! I’d love to hear if this feature is elsewhere…)
Anyone else got useful tricks to share?
I mentioned not long ago that I’d made a “conversation” book for my sister. It’s a small photo book, which could fit in many purses and definitely in many small bags and backpacks, and it’s meant as something Lily can share with people she meets.
I added a second book: a book about my perspective, as a sibling, about my sister.
Things I included:
– where I live and why, how I keep in touch, etc.
– a guide to Lily’s alter egos
– a description of some family and friends
– suggested activities
– “creative” stuff (art, play jewelry making)
– “normal grown up” stuff (cooking, cleaning, exercising, doing volunteer work)
– fun stuff (hanging out with friends, going out, making phone calls)
And oh, the pictures! Pictures of Lily cooking. Pictures of her action figures, her leg braces, her favorite movies. Pictures of her in her wheelchair, going for a walk with my mom (I took that picture over Thanksgiving) and bowling with her friends and participating in family get-togethers. Pictures of the two of us together, as youngsters and as adults.
So far, I’ve gotten positive feedback from my parents, since I had the book delivered to them (and a duplicate, in case of damage to the first). I hope to hear soon whether the staff find it helpful. I mean, the entire goal of the project is to have a little bit of input into Lily’s life, but one that preserves my non-parental relationship with her and doesn’t require me to find a ton of time for her while I am finally getting settled in at my new job. I feel like I’ve seen a LOT of posts on SibNet about people who are their siblings’ custodians or guardians or otherwise legally responsible for their sibs, or who are basically excluded from caretaking, but not quite as many that are about the way I am with Lily. We are close and I want to be part of her life, but she has our parents there to make sure she’s okay on a daily basis.
I’ll let you know how it goes!
Got this email and wanted to pass it along:
The Sibling Support Project and the Kindering Center are pleased to announce GKSN—Grandparents of Kids with Special Needs. We believe that no one understands a grandparent’s unique joys and concerns better than another grandparent of a child with special needs.
On the GKSN website, grandparents will have a chance to meet other grandparents through our Yahoogroup or Facebook groups, share ideas for supporting their kids and grandkids, and even post pictures of their grandkids!
Please visit www.gksn.org and help us spread the word!
Director, Sibling Support Project
A Kindering Center program
My sister was so happy to have me home for the Thanksgiving holiday that when I first announced myself to her, she grabbed on to me and had a hard time letting go. I can’t blame her, really – wouldn’t you physically keep hold of someone you wanted to spend time with if you couldn’t see?
It was great to see her. We’ve had enough space recently that we really missed each other. It’s so much fun to be with someone who gets you and cares about you but also is willing to give you a bad time, without malice and just because.
It was also painful, of course. Lily was so happy about celebrating Thanksgiving, and about having me there, that she wanted to share it…and said that she wanted to call Grandma. I quietly told her that I knew, and let the subject drop. I assume Lily interpreted this as, “Well, you’re asking for stuff again and we have our reasons for not giving it to you, so we’re going to talk about something else now.” That Grandma died is something I’m still not sure she has been told, and I am sure she doesn’t understand.
Lily’s also transitioning staff still/again. I keep wanting to sit down to talk about what other people prejudge her to be, partly because of this constant exposure to new people…and honestly, it makes me hesitate, because it’s also so painful to see her struggle to process all of these new people.
But! Let me tell you the cool thing I did that’s working: I made my sister a conversation book.
Most of you probably know that there are a bunch of websites out there that sell products that incorporate photographs. Well, I went to one of those sites and built a photo book. Each page has one or two pictures of stuff that Lily has in her life: her Star Trek action figures, her Medic-Alert necklace, her rocking chair. I captioned each page (or picture) with a phrase that I imagined Lily might say, were she to tell someone new about whatever was in that picture. (Um, using correct grammar. Mostly. :-))
Apparently her staff LOVED it. It’s simple and not super long, has some of the most frequent people and things she talks about, and matches pictures to words.
Bonus: I can order more. (I just got the one because I wanted to see how it would work.) Then if someone loses it or damages it, the information isn’t gone. I’m working on a similar book that has “our stories” in it, which is specifically from my point of view, because I’m not there every day. In the draft text, I list Lily’s various alter-ego voices and their origins. I describe the family and friends she talks about most. I tell them what Lily’s favorite conversational set pieces are: the correct responses to the questions she is likely to ask dozens of times per week or month.
This may not work for everyone, but maybe it will work for some sibs. (Or other loved ones!) It seems to be working for us, to bring my permanent relationship with my sister back into the focus of people who live close enough to spend time with her every day.
One of my friends was told about this fascinating resource by one of her health care providers, and passed it on to me: The Weather Channel has a prediction page for aches and pains. They provide a daily and ten-day out forecast of how much pain you might experience if you have a pressure, humidity, etc. sensitive condition. Check it out here.
I woke up today after a bad fibromyalgia day yesterday – vertigo, on the verge of a headache that was either migraine or tension, joint pain (jaw, elbow, finger, knee), and the requisite nausea – not feeling optimistic. I had a very hard time sleeping, worse than usual, and I’m not entirely sure why. Frankly, I hadn’t been sure why yesterday was so bad! I just remembered to look at the aches and pains forecast for my area, though, and today’s rated a 6 out of 10. Maybe I’m more sensitive to weather patterns I hadn’t been tracking than I suspected. (Hence, not tracking them.)
Hopefully it’s useful to you, too!
My sister’s limited mobility means this is less useful for her, but the USGS offers something called the Access Pass. Per the website, this pass grants reduced rates at national parks and recreation areas in the United States to people with disabilities. You have to demonstrate permanent disability, but there isn’t a direct fee, and it can extend to companions. (For instance, it looks like I could use a pass to drive my sister to a national forest for a hike and get a parking discount, since that’s charged per car.)
Goodness knows there are enough barriers to access for too many people in too many ways. Hopefully this can help some people enjoy some of the wonderful places in the US! (Wow, that sounds kind of sappy or like propaganda – but don’t worry, it’s just because I’m a biologist and I like plants and bugs and such.)