This is me when I'm not doing the stuff for my regular blog. That means not necessarily as careful, not necessarily as able to do things, lots of things could be different than usual. I don't do trigger warnings, and I have genuine well thought out reasons that aren't just some kind of callous BS.
galaxies inside your head.
Stop letting people
you cannot shine.”
"For all those self doubters, take note" (via thisisthehorrorshow)
(Source: cudah, via clatterbane)
I’m not usually into ‘awareness jewelry’ at all. Like ribbons, and stuff, it just generally turns me off. With rare exceptions. But the green butterfly is a symbol for gastroparesis, for some reason (butterflies in stomach? green bile? that’s all I can think of) and I really liked this ring. It feels fragile, like I’m not sure how long it will last, especially since it’s three-dimensional and I don’t always know where my hands go. But as long as it lasts, I like it.
Someday I would like to see if Anne or someone else I know who can do that sort of thing, could design and build me some piece of jewelry in the shape of a tiny metal feeding tube or something, but in the absence of that, this will have to do.
Did someone send me a children’s book?
Because I didn’t order it, and it just arrived.
This is the even moss stitch. I got this brown wool yarn that was supposed to be worsted weight but it’s clearly much thinner than that. At first I was extremely disappointed how thin it was, but it’s starting to grow on me. This was done using a size G hook. I’m going to just try doing squares in various different stitches from Stitch A Day and other places, for awhile, and see where it gets me.
Anyone with hypermobility syndrome or EDS or Marfan’s etc. know how to deal with this?
Okay so, for the benefit of those in the tags, some background:
I have hypermobility syndrome. I also have a neuromuscular condition, adrenal insufficiency, a movement disorder, and autonomic dysfunction. The adrenal insufficiency has gone undiagnosed and untreated for years, making every other medical condition I have (and there’s a lot) worse all at once. Which means I’ve spent the last six years in bed and using a tilt-in-space power wheelchair for mobility (all the time outside the house, some of the time inside the house). I finally am getting that treated. And I’m finding myself with more stamina than I know what to do with.
So I’m trying to get back in shape. Whatever that means for me. Before the time we think the adrenal insufficiency started, I walked more often than I do now, and used a manual wheelchair the rest of the time.
When I started on the steroids to treat the adrenal insufficiency, I started doing jumping jacks. I rapidly went from 5, to 10, to 20, to 30 at a time without even getting winded. Great, right?
Well… not so much, it seems. I’d forgotten that I have a horrible combination: Loose joints, weak muscles, and years of muscle deconditioning. You probably all know that people with loose joints need stronger muscles to compensate. I don’t have that. Even when my muscles were stronger than this, I still often had trouble with pain and injuries to my ankles, knees, and hips. I’ve rapidly injured my right knee (I’m not sure how, but it’s a familiar sensation so I must have done it in the past) trying to do jumping jacks, so I’ve had to stop that and go for a much lower-impact workout.
How do other people (with any of the hypermobility syndromes) handle this sort of thing? As in, is there any sort of adaptive equipment, specific kinds of strength training, etc. that can help offset this problem enough to allow me to do a simple cardio workout without screwing up all my joints in the process?
Somewhere in the house I still have the ankle braces I used to use when I walked more often. I’ve ordered a knee brace for this messed-up knee (because I’ll need it anyway just for the support, whether I’m exercising or not). I’ve injured both of my IT bands in the past. One of my elbows likes to injure itself badly enough in my sleep that I sometimes need a sling for a week or two afterwards. My neck is permanently screwed up already (has actually reduced range of motion on one side due to a hypermobility-related injury, weirdly enough).
Is there anything obvious I should be doing, with regard to muscle strengthening, or adaptive equipment like braces and things? Are there any tricks anyone knows to make this easier? Or should I just assume that hypermobility is going to severely limit my ability to work out, even if adrenal insufficiency is being treated finally?
I just started, today, running into the problem I thought I’d run into.
Which is, my joints are too loose, and my muscles are too weak, so it’s really easy to injure my joints. I mean, I’m hyper mobile and I haven’t done any exercise to speak of in six years, whether strength or cardio or anything. Because I haven’t had the ability to, with neuromuscular stuff and adrenal insufficiency combining. So suddenly I’m trying to exercise, and suddenly my body is up to dealing with a fair bit of cardio, but my joints aren’t strong enough to take the jumping jacks and stuff.
Oh and I’m tagging things like this with ‘exercise’ or ‘fitness’ in case anyone has eating disorder issues or anything like that and wants to avoid these tags. In my case, I’m not trying to lose weight, I’m trying to get my body in shape in a much more fundamental way — I’ve been in bed for six years and that’s horrible for your cardiovascular system. I’m still not sure how much I’ll be able to handle, given my other medical conditions, but I’m trying to find out. So never assume that anything I write about exercise is about weight loss — weight loss is the last thing on my mind. (In fact I’ve been told if the treatment works I should be gaining some weight again, because I’ve lost 60 pounds to some combination of gastroparesis and adrenal insufficiency.)
So I’ve already got ankle braces somewhere around the house. I should probably find those and start wearing them. I’m already messing up my knee joint, so I just bought a knee brace. I really wish I had more exercise equipment in my house, so I could do better strength training than I’m equipped to do, because that’s what you need to offset lax joints — strong muscles. I’m not sure how much strength training I can do, given neuromuscular stuff, but right now is a time of exploration to figure out exactly how much of my weakness has been neural junction problems and how much has been lacking any cortisol to speak of. So I don’t know what my limits are.
My problem now is that I’m incredibly tempted to overdo it. The feeling of getting my heart pumping again, feels so good that I’m tempted to ignore things like whatever I’ve done to my knee. Which is horrible and not going to work long-term. So tonight, instead of doing more jumping jacks, I looked up some low-impact sitting-down workouts and did about four minutes of that. It didn’t get me the same immediate feeling, but after four minutes it definitely felt similar to a shorter time period of doing jumping jacks.
I’m now worried, though, that my body is just going to fall apart some other way. Like, I’ll be able to handle some degree of cardio, but my joints will fall apart, or something like that.
But I’m thinking of getting myself a crappy manual wheelchair and retraining my body to use one of those, to see whether I’m capable of that again. Because before all this got so much worse, I was a part-time manual chair user rather than a near-full-time power chair user. And I’d like to at least have the option to switch back and forth, when capable of doing so.
My knee hurts.
I have no idea what I did to it, but I know that my knees, ankles, and hips are all prone to various injuries and pain when used more than minimally. If all this keeps up I might have to actually go to physical therapy and see if they can work out a good way to work with all these limitations. But I’d rather not do that if I can help it — last time I went to PT I ended up having nightmares about my physical therapist. He started out telling me things like “Just let me know when it’s too much, and we’ll modify things for you” but when I told him I wasn’t going to balance on one leg, he started accusing me of not trying hard enough, and then telling me that maybe I’m not suited for physical therapy, and a lot of other BS. When I told him that my body literally couldn’t take hours and hours of exercise per day, he basically kicked me out. And that was after I’d already started having nightmares about him.
I wish physical therapists could more often be what they’re there to be — not glorified gym teachers, but people who know about a lot of unusual body types and how they relate to physical movement. He actually told me he wasn’t equipped to deal with anyone who couldn’t stand on one foot… this after he told me that he normally worked with people who couldn’t walk at all. So I have no idea what was up with all that. I can stand on one foot now, but that’s after Mestinon and Decadron, neither of which I was on back when I got the injury that sent me there.
But… it would just suck if I was now capable of the cardio aspect of workouts, only to be unable to do them because my joints don’t want to work. Or similar, if I start running into the actual limits of my neuromuscular condition, or autonomic dysfunction, as opposed to just the limits of the adrenal insufficiency. I hope that doesn’t happen, because there’s something exercise gives me that I don’t know how to name, that’s really important to me at the moment.
5 Ways to Support Indigenous Women on International Women's Day
Every year, March 8th is dedicated by the United Nations as International Women’s Day. It’s a day to honor the unique struggles, strengths, and potential of women around the world, far too many of whom face violence, poverty, environmental destruction, disease, and discrimination on a daily basis…we believe that a community cannot be healthy if its women are not supported and loved – strong women lead to strong families, communities, and nations. Here, we’ve compiled a list of five suggestions to help and celebrate Indigenous women on International Women’s Day.
1. Educate yourself about the epidemic of murdered and missing Indigenous women, a devastating occurrence that far too many people are unaware of – over 800 Aboriginal women have gone missing or been murdered in Canada in the past 20 years, and their cases are rarely thoroughly investigated by police. Start by watching Survival, Strength, and Sisterhood: Power of Women in the Downtown Eastside, a short documentary on the 20 year history of the annual memorial march for missing and murdered Indigenous women in Vancouver. Explore Rabble’s Why I March forum to learn more about families involved in the movement. Find a local showing of the very powerful Walking With Our Sisters exhibition, which honors the lives of these women through a display of hand-made moccasins, each representing a missing woman. Support the Missing Sisters mapping project by learning about open cases in your area and adding any information you are aware of regarding missing Indigenous women. If you’re feeling particularly ambitious read Amnesty International’s report Stolen Sisters, as of now the most comprehensive report on violence against Indigenous women in Canada. And of course, join the growing voice of people demanding an official inquiry into Canada’s missing and murdered Indigenous women – sign the online petition here, contact your local representatives to voice your concerns, and join the online conversation using the hashtags #MMIW and #VAW.
2. Join PBS’s SheDocs online film festival, featuring twelve short documentaries about inspiring women from around the world. In particular, check out “Kind-Hearted Woman” a film following the struggles and triumphs of a divorced Oglala Sioux mother living on the Spirit Lake Reservation of North Dakota. The coolest part about this film series is that you can join in the online conversation about them using the hashtag #SheDocs on Facebook and Twitter. These films will be available online from March 1-31. Another great film by PBS to watch in honor of International Women’s Day is “Young Lakota,” an new Independent Lens film about three young women fighting to make comprehensive healthcare available to women on the Pine Ridge Reservation. The film is not currently available for viewing online, but you can find details about public screenings as well as a DVD request form here.
3. Lend Financial Support. There are so many organizations doing amazing work with Indigenous women – if you have the money to spare, consider making a donation to an organization such as the First Peoples grantmaking program, which will help fund small-scale Indigenous led development project around the world, the Native Women’s Association of Canada or the Indigenous Women’s Fund (FIMI). If you can’t afford to donate, consider joining a fundraising event such as Walk in Her Shoes. By joining this movement, you’ll receive a pedometer and access to an online fundraising page. By getting people to sponsor you to walk 10,000 steps per day for a week, you’ll raise money to provide for water wells and water and sanitation programs for women around the world. The average woman in Africa must walk far more than 10,000 steps, or 5 miles a day, to collect water from far away sources.
4. Support girls’ dreams and aspirations. As girls enter puberty they become especially vulnerable to developing negative patterns such as unhealthy relationships, eating disorders, self-esteem issues, alcohol and drug use, unprotected sex, and slacking off in school and other hobbies. Girls living on or near reservations in particular are often exposed to higher rates of substance abuse, teen pregnancy, and youth suicide. Take the time to mentor young girls in your community or family, or volunteer at an organization that works with youth. For inspiration, explore this amazing collection of girls’ dreams from around the world compiled by Girl Effect, and watch the extraordinary documentary Girl Rising.
5. Support a local domestic violence shelter. One in three Native women will be raped in their lifetime. Three in five will be physically assaulted. Native women are more than twice as likely to be stalked as other women and are murdered at a rate of ten times the national average. Underreporting of assault and domestic violence means that these numbers are likely even higher, and unfortunately many of these cases are not properly investigated or prosecuted. This is a huge, multi-dimensional, systemic problem that unfortunately will not be fixed overnight; however, there are many ways to help. Support your local domestic abuse shelter – they typically can use monetary donations as well as donations of household supplies, children’s items, and volunteer time. All such shelters need your support, but some specifically offer services for Native women, such as the amazing Battered Women’s Support Services. And of course, spread the message of non-violent love in your life – the Indian Law Resource Center’s campaign Safe Women, Strong Nations provides great tools for helping others learn about healthy relationships. Help teach the young people you know how to recognize red flags in a relationship, how to negotiate disagreements and disputes without resorting to violence, what consent means, and where to turn for help if they find themselves in a dangerous circumstance.
words can be misleading
Words that have the same sort of semantic shape can mean radically different things. It doesn’t matter what they logically should mean. It matters what they actually do mean.
For instance: “pride”
- Gay pride means asserting that gay people are legitimate and have the right to live and love
- Straight pride means asserting that straight people are better than gay people
It’s important to understand how words are actually used. If you rely too much on logic rather than actual usage, you can end up inadvertently saying really hateful things.
Yes and even outside those two definitions of pride.. I’ve heard people, even some gay people, say “Why should I have gay pride? Pride is something that comes from accomplishment. Being gay isn’t an accomplishment.” And while I’d never force anyone to use the word gay pride on themselves, I get really annoyed when, despite repeated explanations, people insist on using a definition of a word that they’ve been told doesn’t apply. People who say what I just described, usually don’t stop at not using the term gay pride on themselves. They then go down to put down any gay person who does use the term — telling them it’s illogical, or doesn’t make sense, or fosters vanity and pride (in the ‘seven deadly sins’ sense), or other things like that.
Just to be clear.
My life is not a disability melodrama. It is not a novel. It is not a movie.
Yes, I’m extremely excited that I’ve been diagnosed with adrenal insufficiency. But I’m also extremely wary of the way people assume that excitement works.
It’s not that I didn’t have hope and now I have hope. And it’s not that I didn’t believe in hope and am now being shown the value of hope. And it’s certainly not one of those ever-popular stories people (including many disabled people) love, where my life was horrible until a brilliant doctor made a discovery that cured me and pulled me back from my potential death.
Even though my doctor is brilliant, in my eyes. And he discovered this. And I could’ve died. And I’m getting treatment that is undoubtedly extending my life. And I’m excited as hell and grateful as hell for all of these things.
It’s not the components that make it not one of these stories. It’s the storyness of the whole thing. It’s the fact that it reads like an inspirational melodrama instead of my life. It’s the fact that I’m forced to interact with people, constantly, who think my life ought to be such a melodrama and try to force it into the mold of such a melodrama.
As a society we haven’t progressed beyond Victorian novels like What Katy Did in terms of how we view disability. Seriously. Read it. That’s how people think of us, today, still. Including many of us.
And melodramatic stories about my life, make me want to puke. I’d rather just live my life.
Like… I’m happy to be treated (not, thus far, cured) because I feel better and it makes me more likely to live longer and I like being alive.
But I have never, ever, subscribed to the weird melodramas where the only two acceptable states are cure and death.
And I have never, ever subscribed to the weird melodramas where ‘hope’ is about healing and cure and doctors and treatments, and the opposite of ‘hope’ is being sick and ill and maybe even dying. And where the whole story is about how the disabled person learns to ‘hope’ again.
(Insert double horribleness if the disabled person needs to ‘learn the lesson’ that their acceptance of their disabilities is actually because they lack hope, and are settling for less, and need to be kicked into gear by all the nondisabled people and more enlightened disabled people around them, so that they will seek treatment and save their own lives.)
These weird melodramas make me gag.
It’s a powerful reflex.
It’s not that I like being sick (although sometimes, with some conditions, I don’t mind as much as you think). It’s not that I don’t like being well (although there are conditions I wouldn’t want cured, and you wouldn’t always be able to imagine which ones they would be).
Those are individual facts, devoid of melodrama.
The melodrama is what makes it horrible. And the way the melodrama is forced down our throats until we choke on it, is what makes it horrible.
Oh also this isn’t some kind of statement about what is and isn’t okay to feel when you’re disabled. It’s a statement about what I feel like about people who insist that I have to feel like a Victorian novel or fifties-era movie say I ought to feel about being sick, and that in fact all sick and disabled people secretly feel this way, deep down, because our lives are, secretly, all melodramas.