Keto for seizures: food recommendationPosted: June 11, 2018 Filed under: ketogenic diet for epilepsy, Ketogenic diet recipe tests | Tags: caretaking, epilepsy, ketogenic diet, low carb, modified Atkins, seizures, sister with disabilities Leave a comment
At only 0.5 g carbs per half-cup serving (1/4 of the mix), this is a huge find for us: Simply Delish Jel Desserts.
We love it because the low carb count means we can fit this in as a snack for Lily, who is still on 15 g carbs per day. She’s never been a fan of Jell-O or other gelatin-based desserts, but sweet is sweet and snacks are snacks and to be pursued.
For Lily, food manipulation is important – being blind makes texture that much more important . The instructions call for a total of 13 ounces of water (3 cold, 10 boiling), and I typically now use a total of 10 ounces. That holds up better to fingers grabbing at them.
I’ll post later about trying to make these using sugar-free Kool Aid, and the experiments with various molds, but today’s double batch were prepared in cake pop silicon molds that I bought at Michael’s. The tray makes eight, so two are a single serving.
Note: having some tech problems tonight. Hope to come back to fix formatting weirdness and insert some links.
(Mis)adventures in painPosted: July 25, 2014 Filed under: Day in the life | Tags: anxiety, caretaking, catharsis, chronic pain, empathy exams, fibromyalgia, insomnia, sibling with disability, sleep disruption Leave a comment
Scenes from an active mind feeling fractured; this post does not flow well because my thoughts are not flowing well right now, but I think…I think I want to say it all, this way, anyways.
I’ve been in pain a lot recently – emotional as well as physical, and at times it’s felt…dangerous. Dangerously alone, fighting for control of situations I can’t control. What I crave is the safety to cry, to be held just tightly enough in the arms of a lover that I don’t have to think in order to feel myself not being alone, but gently enough that I have space to sob until my emotional pain, somehow, becomes physical, and fades.
Of course, I can’t have that; it’s magical thinking, I’m single, when I cry my sinuses fill almost immediately.
When it does come, catharsis comes at bad times, very often late at night, adding to the difficulty that is sleep. (I’ve been having nightmares recently, and there seems to be clinical evidence that sleep is disrupted in people with fibro.) It’s a horrible boom and bust: can’t fall asleep due to physical pain or anxiety, can’t get out of bed until late because of the need for sleep, not sleepy the next night when it’s normal bedtime because of sleeping in.
The pain was really bad while I was reading an amazing book – The Empathy Exams, by Leslie Jamison. It’s a powerful collection of essays, exploring, yes, empathy, but through lenses of pain (chosen and unchosen), incarceration, pushing yourself to the limits of endurance. It touched my sense of pain really deeply, evoked too much sympathy or empathy or whatever; I felt querulous and depressed while reading it, while simultaneously intellectually stimulated and relieved at recognition.
The pain is opposite around most of my friends; not everyone knows about the fibro, and I don’t feel able to be truly open and honest about my symptoms with more. Facebook can feel like a minefield: new pregnancies and births remind me that I’m aging and now have a chronic health condition that might preclude pregnancy or childbirth (LONG wished-for); weddings and vacations with friends can sometimes sting, alone as I feel (and as worried about money as I am). Someone said something about realizing that health is wealth, recently, as so many people share platitudes in graphic form about their luck or fortune at being healthy…and I am concealing a chronic condition.
Of course, all of the sponsored ads and posts from the few support groups/fibro/chronic illness/invisible illness groups I’ve joined? Sometimes they remind me that I’m not doing so badly – I’m still working full time, I’m not yet charged with Lily’s care, right now those I love most dearly are alive. I can afford to live in a place where I feel safe and comfortable, have health care from my job, and I can pay for my medications and health care.
AND – it MUST be said – I am still capable of being delighted by the good news and celebrating with my beloved chosen family and less close friends the wonderful events in their lives. I can support friends who are learning to accept themselves or others through the lenses of those platitudes, or who are trying to create more joy than sorrow by expressing positives. This is all possible, devoid of the jealousy or bitterness about my lack that I am currently fighting. Sometimes it’s closer to a 95%/5% YAY/BOO balance, but that I can handle – then I can join in the cheering while hiding my own pain, which is totally appropriate. Everyone does it.
It’s hard to think of yourself as lovable when you’re this deep in pain and so socially isolated that you sink into it psychologically. I’m never quite sure if I lack the energy to go out and be social, or if I think I will lack the energy and miscalculate, or (and this is the real fear) if I think I will lack the energy and that thinking causes my body to act as though I don’t have the energy. Walking to work in the morning feels awful, almost always, but I feel better several hours later, which adds to the confusion about whether I should rest or exercise during these phases.
Which leaves me here: locking into my own mind, hearing my jerkbrain insist that if I had any chance of finding or meriting love BEFORE – when I was already unsteady in myself as a genetically biracial woman raised only knowing half of the family, Jewish and valuing that, daughter of a woman with a degenerative neurological disease that THANKFULLY is held at bay by drugs, and big sister to Lily, complicated if wonderful person that she is. Now, I have fibro. Yeah, dating sure is fun. (Insert a rather sour expression here.) Feeling like a failure at dating is hard to stave off when you haven’t figured out how to leave the pain behind. I remember venting to a friend that nobody would want to have sex with a woman who needs to wear gloves at night during the winter in order to avoid finger joint pain; I know that I weigh more than I might otherwise because of the challenges of physical pain from exercise, medications, and strong food cravings that may be partly shaped by the fibro and/or the meds.
A variation of my daydream-nightmares is that I fail to find a partner, fail to keep a job or earn enough salary to support a family – because Lily is my family, and I need to be able to support her. One reason I seem to constantly be pushing my diagnosis away is that I can’t believe that after 30 years of life with Lily, I am no longer the healthy one with the brilliant career path possible. I love the work I do and find it to be incredibly important, but I know it’s less valued – intellectually, financially, and socially – than the job I had been aiming for.
I know I need to be working with a therapist because not only do I need to have help in handling this. I don’t want to. It takes time and money, it takes opening myself up again (AGAIN) to a new person. I don’t want to go to a therapist because I want to feel normal. Normal people may not actually manage their emotions perfectly, but there’s at least a facade of managing.
It’s hard to talk to people about it because I have empathy that they don’t expect. I understand something about the morning sickness of pregnancy because I’ve spent months vomiting on a daily basis. I understand something about toddler behavior because my sister is developmentally locked, in part, at that age. When I try to express this, I am sometimes rebuffed. I am afraid of that, so I hold back. Sometimes being smart enough to see the connections hurts, when people on the other side of those potential connections do not see, or do not want, to connect. (Don’t you love my elitism? Yes, I work to moderate most of it. Some of it is my philosophical preference.)
I know I am managing to proceed with my life, out of control as it feels. I know that the fracture lines are imagined or felt but not concrete, even if the pain is, very often, quite real. I hope it’s okay to say all of this; I need to be able to talk about it somehow.
I am not my sister’s keeperPosted: August 10, 2009 Filed under: Medical crisis | Tags: caretaking, sister with disabilities Leave a comment
I am not her mother, her doctor, her legal guardian. I am not her coach, teacher, or assisted living staffer. I am her sister.
That is not an easy lesson to learn, let me tell you. Right now I am full of relief that Lily is doing okay. Last week she had to have some dental work done, which meant she had to be put under general anaesthesia. I was away from my normal life on a business trip that day, and was pleased to hear when I was able to call that Lily was a bit grumpy but otherwise fine. She was on painkillers to ease the aches of a tooth removal and fillings, and wanted to eat solid foods that she didn’t realize would make her even less comfortable. (I guess we now know how to get her to stop asking for soup – give her nothing but!)
…until, that is, a couple of days later, when she still sounded tired and unhappy on the phone with me, wasn’t really interested in eating, and had developed a fever. All of the wonderful words and affirmations of life without unnecessary worry that I’ve written about here (new window) were completely wiped out. As I’ve learned from my own frequent doctor’s visits over the past few years, high fevers normally accompany a bacterial infection. Bacterial infections are known to result from dental work (there are a lot of bacteria in the mouth, and any injury can create a physical opportunity for bacteria to enter the blood). Indeed, I had to take antibiotics before visiting the dentist for a year or two because a slight imperfection in my heart might predispose me to fatal infection.
I thus became worried. My worry intensified with the realization that it’s been less than a year since Lily was hospitalized with a Salmonella infection. My worry turned to anger and fear when my mother related her frustration that the doctors hadn’t returned her phone messages within a few hours; by that time Lily was running a fever of 104F. I went about my business, even having fun with some of the new things I was learning and seeing, but it was in the back of my mind and every so often would make me fidget in my seat as the worry became a full-on distraction. (I was in another time zone, which made me feel even more helpless than normal; I was awake while they slept, giving me that many more hours of unease.)
The doctors finally did return my mom’s call, and ordered antibiotics for her. (I am also less mad at them now than I was; they are, after all, human, and have other patients and their own lives to attend.) Lily’s sounding much better on the phone, and her fever seems to be dissipating. Her normal staff are still working with her, but Lily is staying with my parents right now. (This is actually a huge relief to me – it means that there’s a fresh set of eyes, ears, and hands that can provide some respite for my parents. They’re able to take naps and run errands or do chores as needed because of it.)
That I reacted with such strong emotion is not a great thing. I am not my sister’s anything…except sister. My righteous indignation, or just plain anger, do not have a significant place in the legal and medical framework of her care. My own depth of education into the biology of disease thus becomes a burden; I know enough to become worried or to recognize problem areas, but I don’t have the power or knowledge to help. For both of our sakes, I need to learn how to let my family have their lives continue without me immediately available, if only to be stronger and more capable at a later point when our daily lives can or must be rejoined. And I think I have to give myself permission to treat letting go as a difficult goal to achieve, and not feel bad that I haven’t mastered those emotions after ten years of living away from them.
I have NO IDEA how other people can be primary caretakers for their sibs with special needs. I simply admire them and hope that they get everything they need to remain healthy and sane at the same time…