Last week was a slow crawl to a shit-tastic climax of sucktitude ending on a Saturday where Curtis worked a ridiculously early shift and the kids were suffering a candy hangover that pushed them into temporary psychosis. Tempest was an absolute fucking nightmare right from the moment she woke up. She was completely out of control; acting like she’d suddenly regressed four years in language comprehension and higher reasoning, she did nothing but stim and continuously annoy people for hours – HOURS – without cease. At the same time, Xan was content to do nothing but hit and whine.

The day was shot as soon as it began with Tempest’s on-the-floor-screaming tantrum about the MySims Kingdom game she had been playing the night before; it had mysteriously disappeared and her game was actually on pause so she couldn’t even stop “playing” and go to the main menu to enjoy something else without the risk of losing all her hard work digging eight balls out of trees or whatever the fuck her character was doing. Also: the Wiimote is out of batteries because she didn’t put it away in the charger like I asked her to.
MySims was overdue and I was supposed to take it back to the library that day anyway, so it’s probably for the best that she not get sucked into the game only to have me fight her away from it later. My hip is in agony and I can barely get off the couch, so I ask Tempest to look for the game disc in our pile of Wii stuff on the shelf.
She literally looks at the shelf, then turns back to me and says, “It’s nowhere.”
I accuse her of not looking very hard and ask her to do it again… and again, she literally just looks at the shelf. Though this time she takes an extra 10 seconds to stand there helplessly before she gently touches one of the DVD cases, pushing it slightly to one side.
“That’s still not looking,” I say.
Immediately her head flies back with mouth gaping open as though she’s unhinged her neck; screaming, tears form in her eyes and she throws herself down to her knees and tries to strip off her clothes while monologuing about how hard her life is.
“You do it! You help me! I’m trying as hard as I can to search and I can never find it!”
“Please just look harder. Actually lift things up and search for it. It has to be there.”
“I did search! I looked EVERYWHERE!”

This pattern continues for some time. We never do find the disc.

I convince the kids they need to watch a movie instead. They fight me every step of the way until I get so sick of their bickers that I finally put my foot down and say that they’re going to fucking watch The Backyardigans and they’re going to fucking like it. I am desperate to nap and hope that their distraction will give me the opportunity to doze for at least an hour. This plan backfires miserably; instead of spending the time enjoying their favourite television show, they argue over how loud the movie should be, whether or not the subtitles are blocking the action (Tempest has to watch all movies with captions. Always) who was talking to me first and whether or not Xan interrupted Tempest before she interrupted him. Every time I just start to drift off someone would hit someone else, or be breathing too loud, or have cold feet, or be hungry for the 140th time in 20 minutes, or not like this song. The one time I actually managed to doze I woke sharply upon realizing the credits were rolling and neither child was anywhere in sight. I eventually found them upstairs stealing my mom’s food, chasing the cats, and looking for treats they know they’re not supposed to be eating.
By that point of the day I had had that ‘manic depressive squirrel’ thing going on where I was so tired that my mind had actually managed to transcend reality to a higher plane of existence where you move very fast, life moves very slowly and all the colours look like they’re breathing.

I give up on the TV/games plan for sneaking in a nap and instead announce that we’re going to go for a walk to the library to pick up some more books. This is exciting and stimulating, not to mention distracting, and while it may not be the sleep I so desperately need it’s basically the next best thing because it may distract them enough to stop fighting for 20 minutes.
I ask the kids to go around the house and find all of the library books they took out the week prior, gather them up and put them on the table for me. Since the day’s events have already shown me they have the collective attention span of a goldfish, this is a lost cause. I have no idea what books they have out because I was on bank duty when we last went to the library, so I try to log into the system and check what’s on our cards. Unfortunately, Curtis has his card with him at work and there’s only about five things on mine out of a possible 13.

It’s at that point, around 10:45am, that I realize Tempest was supposed to have a swim lesson that day. I’ve probably missed it, so I figure I won’t say anything and hope that she doesn’t remember, though I am feeling really disappointed about that for a number of reasons. As if on queue, my computer alarm then goes off and tells me that the lesson is booked for 11:30am, not 10:30, which means we could make it if we hurried. I take this as a sign from God that this day may not be a complete write-off.
Change of plans, kids! I tell them about the swim thing and they seem genuinely excited. Tempest is desperate to swim and Xan loves watching her, for some reason, so this appears to be working out well.
Just as I start getting the kids ready, the phone rings: it’s Marika’s boyfriend and there’s a SRS BNS TEENAGE CRISIS GOING ON that only I can solve so long as I devote my absolute and undivided attention to him for at least 20 minutes. Anyone with children immediately knows what’s going to happen next.

Children have this Pavlovian response to their mom getting on the phone that always, always results in them losing their goddamn minds and becoming the loudest, most obnoxious, needy, violent or otherwise ridiculous shitheads that ever walked the fucking planet. This predictable turn of events means I have to cover the receiver and yell at them every two minutes in effort keep them on track while simultaneously keeping Marika’s boyfriend from having a complete nervous breakdown because she “didn’t come home last night” after going out with some friends and failing to leave a number, location or any scrap of information whatsoever about where she was going or what she was doing. Throughout this I break up twice as many fights between the kids, gather supplies to pack the swim bag, make fresh no-poo bottles for washing Tempest’s hair, make snacks for the kids and somehow manage to advise the boyfriend with a sympathetic and understanding tone without implying that his codependent concern is a little over the top.

I manage to keep all these balls in the air for about 7 minutes before realizing we were going to be late for swimming if I wasted any more time at home. Repeated attempts to calm the Boyfriend down went unheeded, so I politely let him know that he needed to sit tight, stay calm and text me updates instead of calling because I was ridiculously busy for the next half hour. He unsuccessfully tried to get me to call some random stranger he was sure knew where Marika was and was just being a total bitch for no reason (turns out she had no idea what the fuck he was talking about, or even who he was – good thing I didn’t call her). He called me back every 4-6 minutes on the dot to give me empty updates about how nothing new has happened and he’s still just as upset (if not more so) than he was the last time we talked. During one of the brief 30 second periods where I wasn’t on the phone with him, my brother calls and asks if he can come by right now to visit with us and drop off mom’s newly-fixed AppleTV that we bought her for Yule. I tell him that’s fine, but explain that we won’t be here when he arrives because we’re leaving now now now. I have to climb a flight of stairs to give my mom this information, but now I only have 5 minutes to get Tempest to swimming before we’re late for the lesson.
The phone rings again.
Surprise! It’s Marika’s boyfriend.
I ascend the stairs while trying to talk to him. My hip slips out of socket after a few steps and there’s no way I can go any higher; I have to send Tempest. Tempest is eager to help but immediately becomes distracted, doesn’t pass on the message AND causes so much trouble that mom kicks her out in a matter of seconds. I get off the phone with the Boyfriend. Xan is missing. No wait, he’s in the front yard sitting on his butt in bare feet, screaming because he wants to ride his bike to the rec center and we can’t find his helmet. Or his Leapster game. Or a book that he wants to read. Or the colours he wants to play with. And why can’t I understand how bored he will be? This is serious fucking business! Jesus!

A search for his helmet comes up empty, so I’m forced to tell him that there’s no way he’s going to be biking to the center. Queue tantrum of epic proportions. We are now officially late for the swim lesson. I pick Xan up off the ground by the back of his shirt and physically drag him toward the curb with Tempest on the other hand and my shoulders and elbows loaded up with bags. By the time all three of us successfully move from the yard to the curb, my brother is just pulling around the corner and onto our street. Xan suddenly realizes that he’s too big to be seen holding hands with his mom and breaks free of my deathgrip, racing into the street without looking. Brother nearly runs him over. Both kids stop in their tracks, recognize his car and realize that he probably has baby Sophia with him. Now they’re refusing to leave the yard until they see her.
“I thought you had to go swimming?” says my brother as he parks the car.
My cell phone rings: it’s Marika’s boyfriend.
We are now seven minutes late but approaching the rec center: the end is nigh. I tell Tempest, repeatedly, that if she wants to make this worthwhile she needs to run ahead of us and go find her teacher by herself while I catch up. She seems to listen, and disappears into the building at breakneck speed. When I arrive a few minutes behind her I see her she’s standing around in the middle of the room looking confused while a lifeguard clucks his tongue about how a seven year old shouldn’t be alone by the water without parental supervision and how can a mother send her own child into the building by herself and so on.
Turns out the time written in my calendar was wrong and she missed her swimming lesson completely because it was scheduled for 11am, not 11:30. When the lifeguard gives me this news, I say nothing in response, but miraculously manage not to burst into hysterical, wracking sobs. I gather everything back up, turn around and walk home.

On the way, I decide I’m going to spin this into something positive.
“Guess what kids? Now we can look for Xan’s bike helmet, and we all can take a nice pretty walk to the library!”
“But I wanted to go SWIMMING!”
“Why aren’t we staying? What happened?”
My cell phone rings. It’s Marika’s boyfriend.

I arrive home and my brother laughs at my very frazzled appearance as I unpack everything I just packed up and grab myself some pain medication. He’s carrying Sophia in a baby bucket and both the kids instantly mob her. Brother is a nervous dad and gets all weird whenever they try and touch her because he has no concept of normal kid behavior or sibling exposure, so I immediately go on the defensive even though this is my own fucking house and constantly redirect both kids away from Sophia so not to make a bad impression with him. This horrible behavior is ingrained in me after one too many bad interactions with Brother and my kids that left me sobbing through the night. This makes the situation ten times worse for everyone involved.
I find Xan’s bike helmet sitting on the kitchen table in plain sight.
My cellphone rings. It’s Marika’s boyfriend. The situation is now resolved: she came home with no memory of what (or who) she was doing the night before because she was stoned out of her tree.
I congratulate him and hang up the phone: and not a single fuck was given that day.

Dragging the kids away from Sophia takes a good ten minutes, but I finally get them outside after several shoe changes, two t-shirt changes, a bathroom break, one time-out and three requests for food. I realize it is not even noon yet.
We walk to the library without too much drama, but upon getting there the kids suddenly remember the rule about not taking out more than they took back and instantly melt into tantrums. Remember the missing game disc? Yeah. So. I redirect Xan to a play computer to zone out for ten minutes so I can take a breath. I redirect Tempest to the young adult section so she can pick out some magical rainbow kitten fairy books. I redirect myself to the bathroom to throw up and attempt to do the Leo Strut out of the stall in front of several elderly women who are giving me pitying looks because… fuck this.

I come out and Tempest hands me 14 books. A fight ensues about why she can’t take out 14 new books if she’s only brought back five. Xan refuses to leave the game computer to pick out a new book, even after I tell him we’re leaving in one minute and if he doesn’t pick something he’s not going to have a new goodnight story for this week. He swears he doesn’t care.
Two minutes later shows that he did indeed care. He ignores my every whim and makes an emergency run back into the children’s section to get himself a new book, and Tempest takes advantage of the distraction to throw a hairy fit about how I need to let her run the self-checkout by herself. I tell her that’s fine and stand to one side. She informs me that isn’t good enough: I need to stand outside the building where I cannot see her or monitor her progress, otherwise she won’t leave the library. Sensing the death glares from the other patrons beginning to bore a hole in the back of my skull, I give in and walk outside with Xan so Tempest can check out books *~in privacy~*. Xan throws an epic fit about the audacity that I had to forget that he was supposed to check out his books by himself as well. We walk back inside so he can check out his book after Tempest is done. Tempest sees me coming and assumes I’m there to help her and instantly throws her hands up, screaming and blathering autistic nonsense. The librarians consider banning us for life.
My cell phone rings. It’s Curtis saying that he’s home early and where am I?
“Please come into the village.”
“But I just got ho–“
“Please come into the village.”
There is a long pause. “Where do you want me to meet you?”
“At Starbucks.”
We both hang up. I drag the kids outside, take 25 steps and my hip subluxes. The pain is like fire; I can’t even breathe. I have no control over my right leg and am literally stuck in place. Both kids continue running ahead and I can’t muster the strength to call after them to stop, they don’t realize I’m stuck. Other people begin to notice me and approach. It begins:

“Are you okay?”
“I’m fine, it’ll pass. Thank you.”
“Do you need a doctor?”
“Do you need a ride?”
“Do you need an ambulance?”
“No thank you. It will pass. Thanks.”
“Can I call the police?”
“Are you okay?”
“What’s wrong?”
“Please. It’s okay, I’m fine. It will pass. My hip is just hurting.”
“Aren’t you too young to be disabled?”
“You look fine.”
“Are you in labour?”
“You’re probably in labour.”
“I’m not in labour.”
“I’m going to call an ambulance.”
“That’s not necessary, please. It’s okay. Please. I’m fine.”
“Nonsense, you can’t even walk. Let me grab your kids for you.”
“Children, your mother is in terrible pain, why aren’t you listening?”
“You probably need the police.”
“I have a cell phone.”
“Where is your cell phone?”
“Can I call your husband for you?”
There are now 20 people surrounding me. I am humiliated. After several minutes the attack passes and I’m able to limp away, around a corner. Three people follow me and pretend to tie their shoe when I turn around and stare at them. My hip won’t stay in, and the pain is terrible, but I can’t risk stopping in public again and facing the mob of concerned passers-by. I am afraid to limp, and nervous to walk. I wish I had a cane, but I am still feeling too embarrassed to be seen in public with it and have left it at home with my mom so she can use it instead.

Somehow I make it into Starbucks and order the kids hot chocolates. For five miraculous and glorious minutes, nothing happens while they sit quietly and suck the whipped cream off their cups.
I realize that Tempest never got her medication that morning.
I realize that I still have to walk home after this momentary reprieve is over.
I realize someone from the library who wanted to call me an ambulance has followed me into the Starbucks and is sitting in the corner of the room watching me like she suspects I’ll spontaneously combust.

Curtis walks in the door and makes a beeline for me. He reaches into his pocket and pulls out Tempest’s medication, some water, and puts the two down next to her. She takes it without issue.
He hands me some of my pain medication.
He tells me he brought the van and it is parked in the disability space (with placard) right outside the door so I only have to walk 15 feet.
He hugs me.
I break into a million pieces and begin sobbing uncontrollably.
The person who is watching me seems to suddenly have an attack of good conscience and vacates the building. All the people sitting at the two tables around us do the same.

Xan watches me for a moment before asking Curtis, “Why is mommy crying?”
“She’s had a very hard day,” he says. “Maybe we should all give her a hug.”

He brought us all home and I immediately hobble to bed with a hot water bottle and take a two hour nap. When I woke up the house was clean, the kids were fed, calm, and Curtis had just gotten off the phone with a restaurant downtown that had accepted his resume and offered him a new (and much better) job. There is incense burning on the table. Days like that make me wish I’d never woken up that morning, but somehow it always manages to get better by the time Curtis comes home from work. Even if indirectly, his presence seems to immediately take half the weight off me.
Since it couldn’t get much worse, the rest of the day – and the week – was considerably brighter and easier to handle. Almost every day since then has had at least one good piece of news to lift my spirits.
… Enough to even make me finally order myself a proper cane off, and hopefully learn to bring it with me more often.




  • Anonymous says:

    I have to ask this..

    You will probably mob with insults such as “ableist”, “troll”, etc. but you are not very appreciate towards people who are watching out for you and your children. We always read about people who walk by someone in trouble and don’t help, and here you are whining that PEOPLE ARE STOPPING TO HELP YOU. Frankly, I would have definitely stopped to ask if you were all right. It doesn’t mean that I am prejudiced against people with invisible handicaps, or that I am a busybody, it’s more that I am concerned for your welfare. Anyway, flame away with the insults towards people who don’t believe that you are a “victim” of prejudice, injustice, etc.

    • admin says:

      Re: I have to ask this..

      Oh, amazingly knowledgeable and worldly able-bodied person, please tell me more about how people with disabilities should respond to your White Knighting! Gosh, you’re so helpful and amazing… us angry gimps should really just pony up and thank you for all the good work you do for us, right?

      Seeing this yet?

      Stopping and asking someone if they’re in need of a hand = ok.
      Ignoring their requests to stop asking, depart, leave you alone, or otherwise understand that YOU ARE OK EVEN IF YOUR BODY IS NOT THE SAME because you know better than they do = not ok.

      People with disabilities, both visible and invisible, deal with this kind of behavior every single day. It’s the idea that if you have a disability, you cannot take care of yourself, or your family, nor do you know your limits or what’s best for you. It stops being “honest concern” when you’re mobbed by people who ignore what you’re saying for the purpose of white knighting. Much like you have, yet again, ironically defended as teh best thing evar…

      BTW, you’re welcome for the ridiculous amount of hand-holding you have requested (and yes, you have requested it by leaving notes like this. Repeatedly. Going back into last November) on this journal in regards to your screamingly intense able-bodied privilege. Why don’t you do some reading into these issues sometime? Good lord.

      ETA –
      See also: [Intent, it’s fucking magical!]

      I understand it may be difficult for you to understand how the above article and concepts apply to ableism, or any other -ism, slur or offensive display of privilege… but I trust that you have the power to learn with time. Sit and absorb it, it’ll come.
      However, if you’re still finding that after 2-3 hours it hasn’t hit you, you might want to consider reading another journal that is more in line with what you’re carrying in your backpack. It’s ok, we all do it: most of us are just more up front about it.

      The thing is, you’re just not going to make my poor gimp mind understand what an amazing person you all are for ignoring my wants, intelligence, needs, and personal boundaries for daring to be disabled in front of you, so it’s probably best to give up now before you pop a vein. I’ve been amazingly patient with you (yes, this is patient, try this sometime in a disability support community and see what happens to your sense of special snowflakeness) so from now on I’m going to stop unscreening your ridiculous requests for recognition. I’m quite sure that the next thing out of your mouth will be, “I have friends with disabilities who agree with me”.
      Thanks for playing, though. I’ve appreciated your… interesting variety of jaw-dropping ignorance.

    • Anonymous says:

      Re: I have to ask this..

      They see me trollin, they hatin

  • Suddenly my week dealing with face shingles doesn’t seem to be nearly as bad…

  • Anonymous says:

    Another question…

    …if you don’t mind answering.

    How will labor be for you with your mobility and pain? I mean, I know you’ve been through it before, but I was just wondering how that affects labor or if it even does.

    (I’ve commented before on here under my LJ name – waypastthat – but I’m too lazy to log in.)

    • admin says:

      Re: Another question…

      My pain is still my pain, and my disability is still my disability… and while how I feel them has gotten worse (and different) with this pregnancy, neither really has anything to do with labour or childbirth, which are completely different physiological processes from things that I have trouble with (like walking or ascending stairs). πŸ™‚
      When boiling it down to purely physical, my disability largely affects my hip, spine and legs – not my vagina, cervix or uterus – so really there’s no reason to be concerned that I’d have any sort of problem. The only issue that I’ve wondered about is whether or not my spinal fusions continue down into my coccyx, which is a very real possibility and I don’t really have a way of knowing that for sure (my fusions were not present, or not this bad, at the time of being pregnant with Xan and definitely not in the years before that – AS is a fast-progressing disease once it hits and while it’s been active in some degree since teenagehood, I DID NOT have fusions in my early 20’s and I know this for sure as a result of xrays to the area). If my coccyx IS fused there is a very real possibility that it will break when I push baby out (this is confirmed by my midwife). However, as much as that sucks and will really fucking hurt, it’s a healthier alternative to an unnecessary, major abdominal surgery and having to recover from that. So I’m happy to take that “risk” knowing that it’s better and safer for both my body, and my baby. πŸ™‚ There’s no way of knowing for sure what the status of that bone/fusion is until I’m crowning anyway… so I guess I’ll find out soon! My midwife has more confidence than I do that it won’t be a problem: she believes that my hypermobility may have granted me just enough flexibility for it to able to bend (even if affected by the fusions) to give way for a head without breaking. She’s only seen a few breaks in her practice and pretty much all were the result of sitting in a hospital bed while pushing (it’s pretty rare for it to happen AT ALL, let alone in a physiologically normal birth).

      • Anonymous says:

        Re: Another question…

        Gotcha. Thanks for being so accommodating at answering all these questions. I haven’t given birth yet and don’t know much about AS or hypermobility or anything… I have to say that you handle it with an amazing amount of knowledge and humor, even though I know it has to be extremely frustrating.

        • admin says:

          Re: Another question…

          Thank you! I don’t mind questions about it, there’s nothing wrong with being curious – my blog is, as you’ve probably noticed, an open book and I’m pretty comfortable talking about even pretty intimate stuff that goes on in my life. The only time when questions bother me is when people are rude or presumptuous, or come in with ‘concern trolling’. As long as you’re being honest and open with your queries, I don’t mind answering them. πŸ™‚

  • real_bethy says:

    Wow! That day was astonishingly crazy! I am so glad that Curtis came to the rescue!

  • melly4924 says:

    πŸ™ poor you.. the life of a mom! Being pregnant and having pain to add to that mix makes for no fun!

  • I wish I could email you a hug…

  • gardenmama says:

    I’ve been thinking about you a lot over the past few days. I sublaxated a rib and my neck just throwing a ball around with my kids on Thursday evening. I’ve been in excruciating pain, and it makes me wonder how you deal with pain on a daily basis. (Was able to get ahold of my chiropractor today and now I can stand up straight and turn my neck in both directions again.)

    And thank you for your email. We had a meeting with the principal at Scott’s school on Thursday. We stood up for Scott and said our peace, without being accusatory or trying to alienate anyone (I hope). We made a few changes to his daily routine. We were also able to peek into his classroom and observe him at lunch and didn’t witness any of the “disruptive” behavior that got him kicked out of the classroom this past week. We’re thinking his teacher is a bit burned out at the end of the year and a bit sensitive at the moment. I sympathize with her, but don’t agree with how she’s handling it. We also met with the social workers and brainstormed some quick tweeks to get him through the end of the year (only 18 days left) and also some things for next year. We’re going to come up with some manipulatives that he will have access to throughout the day that will be rotated so he won’t get bored with them. Anyway, thank you for all your thoughts that helped me spark some new ideas to try.

    • admin says:

      You’re welcome, I’m glad that some of it was at least a tiny bit helpful. I’m sorry I can’t offer you more… I wish I had the magic answer for you, but unfortunately we’re still looking for it ourselves.

      • gardenmama says:

        Unfortunately, there are no magic answers. And even things that work don’t work all the time. It will always be an uphill climb, and for every step up the hill there’s always a little slide back down. But it helps to know that we are climbing in company and not all alone.

  • Anonymous says:

    I have nothing to say about your shitty day except that your a better person than me, I would have melted into a weeping mess before even making out the door the first time.
    Hypermobility, do your joints click & crack when they aren’t popped out of place? I have it prominently in my hands, wrists, legs & ankles, it doesn’t hurt most of the time (when it does is usually the result of a fall, twist or strain) but I’ve noticed that my joints click & crack, especially when they need to be pushed back into place (not popped out, just mildly unaligned).

    • admin says:

      I do click a lot, pretty much in all my joints (including my sternum… which has only started happening the last few years). Squatting up and down is like a cement mixer.

      There are several kinds of hypermobility, and many people just experience the flexibility without the syndrome. The syndrome is when you’re actually experiencing the injuries, pain and arthritis from it… and then there’s the kind that’s a complication of EDS which I’ve never been tested for but there’s a strong suspicion I have. I haven’t bothered because getting a diagnosis wouldn’t change much and I’m just not in the mood for more tests right now… blergh.

  • elisesahcra says:

    I know what you mean about people surrounding you when you’re injured. I have a friend who has some pretty severe health problems, among which are what she describes as debilitating chest cramps. It’s a lot more complicated than that, but that’s the easiest way for her to tell people about it. We were walking to the library together and she collapsed during an attack. I got her the medication from her purse, and then chased away inquisitive strangers who wanted to call an ambulance (the hospital couldn’t do anything but tell her to rest until it passed, which she could do without paying exorbitant hospital fees). I wanted to tell them “We know what’s going on much better than you do! Yes, she’s clutching her chest but it’s not a heart attack. Go away!” I was glad I was there, because she couldn’t speak during the attack and who knows what some stranger would have done trying to help. Not that the stranger would have been ill-intentioned (quite the opposite), but the end result would have been a pain in the butt for my friend to deal with.

    Sorry for your crummy day, that sucks. It’s a blessing to have a loving family to support you.

    • gardenmama says:

      My sister’s father-in-law was on some kind of heart medication that had the side effect of turning his skin blue upon exposure to the sun (think Smurf blue). They were constantly getting people coming up alarmed that he was “turning blue” and thinking he couldn’t breathe. They really couldn’t leave him alone anywhere because of the helpfulness of strangers who wanted to call an ambulance if they saw him sitting on a park bench somewhere. They seriously thought about hanging a big sign on his neck that said “I’M FINE, REALLY!”

  • Dude….that must suck. Hope things turn around for you asap.

  • fallingwthu says:

    I would like to wish you a very happy Birthday. Lets hope you get some “Me” time and a glass of wine. Just think a few more weeks, and you’ll have that wee little baba in your arms, nuzzling your breast and you complaining that the kids are too loud for her, and you won’t care.

  • Anonymous says:

    Just love…love…love for you and Curtis. Those days are incredibly stressful.

  • Is there any sort of brace or something that can help keep your hip from sliding out of place? I mean, I know that it’s because you’ve got that hypermobility and everything, but is there anything that can help keep things where they’re supposed to be?

    • admin says:

      It’s mostly the dysplasia that does it, and as far as I’ve been told nothing shy of a hip replacement will do much for me.

      • Oh okay. I keep envisioning like a big stretchy band or something that could wrap around your hips and provide tension to keep things in alignment so they can’t slip.

        • admin says:

          BTDT, unfortunately it doesn’t do much as the issue is not that the hip is slipping out horizontally like a Barbie doll joint, it generally slips out due to over-rotation, or it slips upward/downward. Anything that would adequately keep it in place would also prevent me from walking.

          • OH! Thank you, that was THE perfect analogy because I was totally thinking it popped out like a Barbie doll joint. I didn’t even think about the slipping aspect of it. That makes such better sense now!

            • gardenmama says:

              Me too. I was envisioning some sort of pelvis wrap with duct tape to keep everything in place. But how would that work when you need to pee? Lol.

            • admin says:

              “Cool story, bro” alert

              The whole dysplasia thing is that the hip socket is too shallow (or not shaped correctly, malformed, injured, etc) to properly hold my hip joint in place, so in the right conditions it just sort of slides around. The immediate result is that my muscles sort of spring into action to try and keep it in place, and they go into spasm. Nerve and tendon damage from repeated injury makes it feel like someone strung me like a guitar chord and immediately my leg is out of my control. Sometimes it collapses, sometimes it goes stiff, sometimes I get mixed up signals where I’m convinced my toes are crossed or that my foot is all folded up even though it’s clearly not. The pain is really intense but what it feels like varies depending on which way the joint slipped and… I don’t know, the weather or something. I can’t really find much of a pattern to the way it feels.

              At this point in pregnancy, with all that relaxing hormone, I can slip it out VERY easily. Simply kneeling will do it. So will laying on my back and folding my leg up next to my body. I can physically feel, and often actually *see* the joint just slip straight downward toward my back. This is why yoga is actually dangerous for me; it doesn’t strengthen, it makes things worse. If it completely subluxes I usually have to slam my hip against a hard surface, or have Curtis hit it, because I don’t have the strength to get it in by myself (plus, the whole flinch reaction thing).
              The more injuries I sustain this way, the more damage incurs around the joint, and eventually it leads to osteoarthritis of the hip… which is what has happened. It’s my right side only, so I tend to favor it when I walk, and I haven’t been able to do things like run in a long, LONG time… at least 8-9 years. It’s too risky for me, as the impact can easily throw the joint right out. In an emergency I can sort of gallop sideways, though.

     has more. πŸ™‚
              And for the trolls watching: yes they do test for it at birth, but mine either wasn’t considered severe enough to do anything about, or they weren’t testing at that time. Either way no one knew until I was a teenager and started experiencing subluxations for the first time following some weight gain. Mine is likely related to common bone deformities thanks to dwarfism, which is why the risk of my kids getting it is pretty much nil unless they are born with a form of dwarfism.

              Tempest is hypermobile and experienced several subluxations of her elbow and shoulder when she was 3-4, but she doesn’t have the syndrome like I do (daily pain and arthritis risk) so we’re not too worried about her future. We will be getting the kids all tested for the HLA-B27 antigen, though (ankylosing spondylitis).

              • Wow. Okay. This makes SO much sense now. I was getting frustrated, for YOU, that they couldn’t seem to figure something out to help you keep from subluxating but since it’s slipping in a way I wasn’t thinking of, it totally makes sense.

                God, I cannot imagine having it happen as much as you have. I subluxated my hip ONCE back in middle school and omfg. I threw up it hurt so bad! I managed to pop mine back in because I didn’t know what had happened and in limping back towards the school, one of the boys helping me tripped and when I tripped with him, my hip went back and made the most HORRIBLE sound. I seriously cannot imagine how many other problems in must cause, in addition to your AS. I’ve had twelve years worth of back problems that all came to a head this past summer when we were in a car accident. I’ve been in physical therapy for eight months now trying to correct the damage from subluxating my hip ONCE.

                I seriously have a whole new found respect for you. Seriously. You’re a fucking rockstar. I don’t say that to sound patronizing or anything. I’m seriously in awe of you right now.

                • admin says:

                  Thank you, I think. πŸ™‚

                  Though to be fair, I am kind of used to this so it probably doesn’t affect me the same way it would someone who has never experienced it before. Plus, subluxation due to dysplasia probably feels different than subluxation due to dramatic injury.

  • What a terrible, horrrible, no good, very bad day!!! πŸ™

    I hope your hip recovers soon! I’ve dislocated my kneecap three times in the past decade – most recently 3 weeks ago and the recovery SUCKS ASS.

    Curtis is awesome. Do you lend him out? Ha!

  • When I got to the part about Curtis coming with the medication and the incense burning….I burst into tears.

    What a wonderful, amazing man.

    I hope you are feeling much, much better.

  • sylvanna says:

    I’m stressed out just reading that. I wish I could guarantee that would be your worst day for a long, long while.

  • Oh Heather, reading this story of your horrific morning and your immense relief when Curtis arrived with just what you needed, I wanted to cry with happy tears for you that you have that man in your life!

  • conchispa says:

    OMFG, if anyone asks you again “Aren’t you too young to be disabled”, I may humbly recommend that you ask them if they are too old to be stupid. Or whack them with the cane. Or both!

  • Anonymous says:


    Ugh. So sorry!

    I have read your journal for some time and don’t usually comment, but here’s a question:

    Concerned strangers…I imagine when you see a person in pain and struggling, it’s better to approach them than to ignore them? The issue here is that they then ignored you when you turned down the offer for assistance, right? Offer assistance and then respect whatever answer is given? I think often able-bodied people want to be sensitive and helpful and end up coming off as superior and overbearing towards the disabled instead. Not intentionally but not excusably either.

    Have you ever taken a stranger up on an offer to help? Or is it, when it’s a stranger, always a humiliation?

    Again, so sorry for your horrible day!

    • admin says:

      Re: eBirdie

      Thank you for asking this question in an honest, curious manner and not a snarky one. I appreciate that.

      Being asked if you’re okay is fine. While it’s personally embarrassing for me to be approached for just about any reason, I do appreciate that my community is full of concerned and caring individuals who want to do their part to make others’ lives easier. I do the same thing when I see someone crying, or otherwise looking like they may be in trouble. It’s difficult to resist the urge to help others and I understand that.
      However you’re right: the issue here is ignoring it when the person has clearly refused the offer for help and has politely asked them to leave, or go on their way. Being treated like you don’t know what’s best for you because you’re disabled is shit, especially when this occurrence is normal for you and leads to situations like the above where you’re publicly humiliated on a regular basis. It quickly leads to social anxiety or agoraphobia for a lot of people, and while I’ve been able to control that in myself I admit that when I’m having a bad pain day one of the main reasons I don’t want to leave the house is that one.

      • Anonymous says:

        Re: eBirdie

        Thank you, and I can understand this. I’m shy myself, and if I had something going on that was going to draw people to me in an intimate and personal scenario like that (I don’t really even like talking about my personal health issues with my in-laws, let alone strangers) I can totally imagine myself deciding to just stay in instead.

        Also…strangers thinking they know what’s better for you than you do yourself…I hadn’t really considered it from that angle, but I do see it now. Must be infuriating. Ugh.

  • azdesertrose says:

    Holy shit. I’d have broken down in tears long before you did. You’re amazing, and so is your husband.

  • * HUGS*

    I figured after a day like that, a hug is better than anything that could be said. I hope the rest of your week and weekend is relaxing and peaceful.

  • autumnhawk says:

    Oh my, can I relate to this day. Thank you for letting me realize it’s not just my life. Sometimes I wonder.

    Great job on getting the cane. Sometimes it seems that parenting is designed to teach us to care for ourselves and ask for help. You can to some degree avoid it before you have kids. But parenting will just keep on you until you say uncle.

  • Curtis is the best person in the world. And my husband is totally a Curtis, for which I am ceaselessly grateful. How are both of these men only (as in no siblings) children??? There need to be millions more of them.

    I hope your hip is on the mend now after some rest and heat.

  • bluealoe says:

    I have had the absolute worst week ever, I can’t go into it here but suffice it to say that the job I signed a contract for is no longer, among other craptastic events. I don’t mean to be entitled, but reading this post actually made me feel a little better, so thank you. πŸ™‚

  • mammaopal says:

    As soon as I got to the part where you say “He hugs me”, I burst into tears.

    This is so real.

    It also gives me an idea of how much pain you’re in. You’ve talked about it before, but for some reason, an account of your day really painted a picture of what it must be like to have chronic pain and mobility issues. Those people totally thought you were in labour. Which, you know, requires an AMBULANCE, clearly. Ugh.

    I am SO glad you got your nap.
    And that you ordered a cane. Use it!!! Plus, when people make ignorant comments, you can HIT them with it. Whack!

    • admin says:

      I purposefully try to leave out a lot of pain related stuff from entries because otherwise it would just be like a big pile of whining all the damn time… and I can barely stand to think about it every day, so I know ya’ll won’t be able to stand reading it. The downside of this is that when I do need/want to talk about it, a lot of people have this idea that it’s not as bad as I think it is, or it doesn’t effect me that much, etc, and it leads to some… interesting comments. I got one a while back that said (paraphrased), “Huh, I have spinal fusions from surgery and they don’t hurt me. I wonder why you claim yours hurt so bad?” and it’s like… really?
      At the same time, it’s actually worse to read a big pile of, “I hope it gets all better soon!” every time I want to vent. Because people don’t seem to understand what the word “chronic” means. As much as I get what they’re trying to say, it really just rubs it in and comes off as really privileged and ignorant: this won’t ever get better. In fact, it will probably get a lot worse. My reality is that I will likely require a mobility chair in the future, and I’ve only just barely managed to come to terms with the fact that I am disabled AT ALL and still struggle with feeling embarrassed and awkward by things like using a cane or parking in the handicapped space.


      Also, your cane comment: that is one of the two reasons why I bought a folding cane that I can carry in my purse. Someone from a disability community told me that when you take them out you can sort of flick them open with this really satisfying THWACK noise and it looks nice and powerful. If you’re going to be stuck a gimp, you might as well show at least a little bit of STFU in your stride limp.

      • bluealoe says:

        At the same time, it’s actually worse to read a big pile of, “I hope it gets all better soon!”

        Thank you for saying this. It’s kind of embarrassing to admit, but I honestly never thought about how that kind of comment would seem to someone dealing with chronic pain. It’s not something that just “gets better”, and implying that it does…well, I have several chronic conditions, (thankfully not involving too much pain) and if someone told me “I hope it gets better”, I’d just stare at them in confusion. I’ve had this since birth, there is no cure, why do you think it’ll suddenly get better? Dealing with that on a daily basis would get old REALLY fast.

        I totally understand why someone who say that, because they want to offer support and that’s the only thing they can think of to say, but that doesn’t make it right.

        Thank you for making me check my own privilege and think about my words more carefully.

        • admin says:

          Thanks for being so cool about that. πŸ™‚
          Like I said, and I’m sure you understand as you also live with chronic conditions, the sentiment is great but sometimes hearing it over and over and over again is just… emotionally tiring when you’re having a hard time with your disabilities that day or otherwise running low on spoons.

      • altarflame says:

        might as well show at least a little bit of STFU in your stride limp.

        This is what I was thinking in my pimp cane comment up there. I used to go to church with a woman who had to use a cane and everyone thought she was fucking awesome with it because she had a clear, hollow one that she would fill with different things all the time – like little plastic skulls at Halloween, or a strand of lit Christmas lights in December.

      • Anonymous says:

        Because people don’t seem to understand what the word “chronic” means.

        Its like this with depression. When people “hope you feel better!” all they are doing is confirming that they have no understanding of what it means to be depressed (or chronically anything).


        • admin says:

          Yes. When I was clinically depressed this was a huge pet peeve of mine. Or if I was out and laughing at something they’d be all, “omg you’re all better! See how much nicer it is to laugh?” like it’s some sort of lifestyle choice I’m making. Douchebags.

    • On the ambulance thing… am I correct that MSP doesn’t cover ambulance fees? I don’t think they do (at least not in all circumstances) and so those who insist on calling one on your behalf could actually be signing you up for a huge debt, could they not? (Unless I’ve misunderstood how this process works. Admittedly I’ve never taken an ambulance so I don’t know firsthand.)

      • admin says:

        That’s true, they don’t cover it. The fee is about $95 or so, HOWEVER I don’t believe they charge you if you’re low income… at least this is what I assume as neither I, nor my mother, have never been charged for the ambulances we have called in the last 5-6 years (3-4 times?).

        • Oh, that’s good. I also didn’t realize that it was so heavily subsidized for MSP holders (just learned that on their website.) In 2005 I was dating an Australian in Whistler, and he fell down and broke his back on the mountain. I think the whole ambulance shebang cost him over 500 bucks as a non-Canadian. (Covered by his travel insurance, thank god.)

  • Anonymous says:

    “..attempt to do the Leo Strut out of the stall..”

    this has me in TEARS. like.. i think about it and start laughing all over again.

    lame days are full of lame.

  • lindis says:

    What a crappy day indeed, just one or two of those incidents would have been more than enough!

    Curtis is indeed amazing, but I think you are too.

  • Thank you for being so real in this. Makes me feel not so alone.

  • altarflame says:

    Wow. Yeah. I cannot stand that kind of bullshit day, and I don’t even have the pain issues. Ugh.

    This entry makes me grateful for the health I have while validating the problems I’ve got, and makes me love Curtis.

    • admin says:

      I feel the need to add a disclaimer here and say that I’ve had this, and the section of the last entry where I talked about Curtis, in my queue for almost an entire week so I wrote it some time before the two nights of AIM/email stuff and I really didn’t want it to seem like it was some deliberate response like I sat down afterward and went, “Huh, let me write this…”.

  • jenrose1 says:

    Curtis is amazing, and god, I hate days like that. Days like that are when I am so, so tempted to duct tape Shiny to the goddamned wall and walk away for a couple hours. Only I’d come back to find her free, chewing the duct tape like bubble gum.

    Are you getting a badass House-style cane?

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