we also got a new kitten after double checking with the allergist that girl y isn't allergic to cats. then, she was allergic as fuck. then they did a blood test and were like, "our bad! those prick things are only so-so on accuracy. now we need to tell you that you can't keep your child healthy or control her asthma properly unless you get rid of the cat." like that's happening; it's the only thing keeping girl x going. so girl y has had to sleep in the master bedroom (usually with me) because the girls' room is too cattish, but girl x can't sleep alone because she's so depressed and miserable. ask me about my sex life. [hollow laughs]
Oh, man, Al, that is so terrible. Hopefully the doctors in Oregon will figure things out.
Oh, I am so sorry! (Infrequent but long-term Unfogged commenter here, I don't know if we've interacted.) Is there anything that internet strangers could do by way of cheering girls x and y? Would they be cheered at all by trinkets from faraway Flyoverland or anything? (I mean, this sounds hard on girl y too.)
I'm so sorry to hear about this. It is so terribly unfair and meaningless-universe-ish when the young people end up suffering like this. And I hope you can get some rest at least yourself.
Very sorry you and your family are having to go through this. Sending good thoughts your way.
Wow, I'm really sorry she's going through this.
Oh shit this sounds unbelievable! I can only wish you all strength to deal with it. Why hasn't Narnia got inpatient PT? I thought their USP was that they had everything.
thanks! I knew I could rely on y'all to bring sympathy, but wasn't sure if I could handle getting sympathy or actually typing out how much this donks. girl y is "the healthy one" but her asthma sucks right now and she almost broke her foot doing nothing in the exact same spot as girl x did (right before the end of deepawali, so it is our symbolic last thing we tried to do; girl x got a non-displaced fracture but walked around on it for ten days because her baseline pain was so bad; this was her initial push into the wheelchair). we are way too bendy and it comes out in dumb ways; I tore my rotator cuff while doing the breaststroke like I was an old lady in the tel aviv hilton.
and girl y has developed an allergy to WATER. yep, she needs to take antihistamines before she takes a shower, and if the water's too hot she'll get hives all over her fucking body and I have to apply cetaphil and hydrocortisone and gently scratch away from her head with the backs of my nails like I learned about from another mom online in 2002. our condo pool: same result; friend's private pool: OK because it's less heavily chlorinated. water. do I need to get her a strigil? argh rowr bazzle.
chris y: I have no idea. I consider narnian healthcare awesome (and think my in-laws are not evaluating it accurately) but they just don't got it.
Jesus Christ. Sorry, Al. Any ships that make the crossing, or is it too risky to be basically trapped for that long?
So sorry, alameida. I hope the new doctors will come up with something.
Jesus, that is heartbreaking. I can't even imagine.
Yes. I can't either. My thought are with you.
Thinking of you all--and do please let us know if we can help cheer the girls up.
Ugh, that's terrible. I hope things get better.
That sounds terrible and we're thinking of you. Are you sure that hanging out here and getting into acrimonious spats about the Democratic primary wouldn't make things better?
Oh God I am so sorry. If they would appreciate things in the mail or any other distraction, it would be a treat to do something that provides a pleasant diversion.
Seriously, if there's any way to help you have a legion of internet weirdos ready to chip in.
I'm so sorry. I really hope everything gets better for you. It's not fair.
I will pray for your daughter.
I was going to offer to bring out various luxuries from Knifecrime Island to Narnia but then I reread the post and you may not be in Narnia by that time (August) ... if you are, and if you think she'd appreciate some pots of superior jam or something, let me know. Otherwise sympathy and best wishes.
Oh god, Al. All sympathies to you and yours. Do let us know if there's anything we can do.
Sorry to read this, alameida.
I hope there is fast improvement.
What's the nature of your sister's disability? Obviously I'm wondering if there's a hereditary component, which I'm sure you've considered, but also just curious and can't remember.
Very sucks, al. Dearest sympathies.
Are there perhaps options for making the trip by water rather than by air? Less cooped up, though still somewhat, and for a longer period of time.
(This is why we cannot allow an ekranoplan gap.)
29: now more than ever I feel the lack of an ekranoplan.
Narnia of all places should pursue ekranoplans aggressively, in light of the simmering Calormene threat.
That fucking sucks, al, he commented helpfully. I'm sorry.
I'm so sorry, Al. Sending you all the sympathy and will be thinking of you and your family.
I'm so sorry for your troubles, alameida. Good luck.
I'm so sorry to hear this. Long before I knew about this blog I used to read your old blog, and even as very small girls your daughters seemed amazing. I hope that you can figure out what is wrong.
In case you haven't noticed, al, this fucking sucks. Again, if there is anything an imaginary internet weirdo can do ...
I know it's really not a step up from Narnian care, but might there be in-patient PT somewhere in a private clinic in Shanghai/Beijing/Shenzhen? Or might concierge treatment be cheaper to put together on the Chinese mainland?
Also, WTF is up with an allergy to water (!!). You guys really can't catch a break.
Nthing the sympathy. I hope your girls are both feeling better soon. Poor all of you.
I hope this is not offensively obvious, but I'm guessing girl X has already been tested for EDS, since your sister has it?
Oh, Al. I am so so so sorry for you, the girls and husband. That just sucks. I hope that she'll be able to get proper treatment soon and that she will be well enough to get to the US.
and girl y has developed an allergy to WATER. yep, she needs to take antihistamines before she takes a shower, and if the water's too hot she'll get hives all over her fucking body and I have to apply cetaphil and hydrocortisone
Also, huh. I think my husband has a milder form of this; showers trigger it but not really baths (perhaps because the chlorine has time to evaporate? or maybe it's something else altogether). Might try the antihistamines. So, uh, thanks?
Al, that is craptastic. I was wondering recently how y'all were doing. Despite the rotten news I'm very glad you posted. All of this sounds so very dispiriting, not to mention depressing. I hope the physicians pay attention to girl x's mental health too, without their saying stupid stuff like it's all in her head. You are all in my thoughts and hoo boy do I pray things improve.
Something you've probably thought of, but the LA-PHX leg of a trip doesn't need to be in a plane. It's a 5-hour drive on I-10. Unfortunately, it's hot in the summer and no places to stop after Indio (the Starbucks in Blythe?!).
51: both my children would choose a twelve hour flight over a 5 hour drive.
Very sorry to read this, alameida -- I hope you find something to make it better.
52: In that case, I recommend Delta.
I was wondering about you all. So sorry to hear this and sending you love.
Sorry to hear about all the travails. I hope things improve soon.
Anything you can do to increase her muscle tone around the worst afflicted joints is the best possible thing. Find someone who can unwind spasms with strain-counterstrain, it is wonderfully gentle and effective. You just have to figure out how to live in an overly bendy body. And have sons, but a bit late for that. I think you mentioned she has cysts at the base of her spine? As near as I can figure even if they are impinging nerves there's nothing useful that can be done alas. I'd not let anyone touch them.
If you are in OR get cbd tincture, effective and fewer side effects.
And at least she has gorgeous skin, right? I know I'd be massively pissed to not at least have the skin.
Adding to the sympathy & hugs pile. God that sucks.
I'll add to the pile too. Hope things get better eventually.
Oh, I'm so sorry alameida. Hoping everything turns for the better.
Alameida, I'm so sorry, this all sounds completely horrific. As everyone has said, I wish there was some help that we could offer, rather than just endless sympathy.
Would girl x like a penfriend? (Online or on paper.) My 13 year old has just acquired some (she signed up to a penfriend agency. It's nice that they still exist!) and would love to add another one - she loves telling stories and playing characters and swapping drawings and all that sort of thing.
I'm so sorry, al, how miserable for all of you.
41. Point. Would it be quicker to get to Oz?
63: yes, Narnia isn't that close to the mainland... (is Buttercup getting Narnia confused with the former Crown Colony of Smackharbour? Because it isn't Smackharbour, it's the other one.)
only having boys would have been good, yeah. asilon, I'll ask her. she might really like having an email friend, or she might be like, "I have to talk...to PEOPLE?"
Oh, Jeez. Can't think of anything to say for now but wanted to add to the chorus of sympathy
Oh gosh, Al, I'm speechless. Sending you internet hugs.
That really sucks, alameida. It sounds like one of those things where every option is kind of crappy, and it's not obvious how to handle it. I hope they at least figure out what's going on with your daughter soon though, and that it's something relatively treatable.
64
?!?! I have no idea what you're talking about. Narnia's far closer to The Middle Kingdom than to the US. We're talking a 5ish hour flight (4 to Shenzhen) instead of 17/18 hours in the air with transfers. And it looks like flights to Oz are under 8 hours. That's awful but possibly more doable for someone in chronic severe pain.
Sympathies alameida, that sounds incredibly draining and awful.
we could in principle go to oz but we can get ACA health insurance if we establish residency in the state; then the co-pay is not nightmarish (thanks, obama! you're the best). in oz we'd be paying everything on our own. also we have family to be with in the US, specifically in phoenix where my sister-in-law lives and where there's a mayo clinic branch. which AZ policies do not cover!!! but OR ones do, so I'm getting coverage here and then we think husband x will get insurance for him and the girls in AZ. they'll just think we're separating if anyone ever gets far enough to check, and not ask about double coverage. then after one or two months of overlap we'll pick one plan, I think. my brother-in-law is organizing this, and he's doing yeoman's work wading through forms and bullshit. he sort of wants me to come to AZ now rather than my husband, but I think if insurance companies started feeling the bite of a month in the hospital they might try to kick us off their rolls and so think it's safer to have my husband do it so the plans are in different names even though it'll be $$. he doesn't have spine problems etc. like me, so we can stuff him on some eva airlines flight for not all the money in the world. but moreso I way need to go home and be with girl x, I'm her only friend now and spend so much time every day trying to keep her in good spirits. plus fuck going anywhere. one more phone call to strategize with brother-in-law x, and I think I can bail and fly back home to narnia tomorrow. I've been waking up at 3 a.m. but can't muster up a lot of energy to even adjust to the time zone. fuck it.
Oh Alameida. I am so very sorry. I've been fangirling over your babies since they were little, and X is such a wit . . .and to read of X's pain, I can't imagine how you're coping. . .well, I just wish I could help.
Best of luck. . .
Oh fuck, al, I'm so sorry, and I'm so...mad? Yeah. Not helpful, I know, but Christ would it be good to have something to punch in the face for putting a fourteen year old through all of that.
I'm glad your family is on it. And I hope a new medical team can figure it out.
(I haven't commented in a long time, so you probably don't remember me, but I remember you. Hoping for the best for all of you.)
Dona! I'm sure Al remembers you, but I certainly do anyway.
Hi LB! Next time there's a thing at Fresh Salt, I'm there.
This sounds crazy-making horrible, Alameida. I really hope the doctors can figure out what is wrong, and then fix it. What an ordeal for a 14-year old (or for anyone at any age, but 14? that's just not fair).
I've been wondering what's been going on with y'all but I didn't want to read this sort of news. That's awful, seeing one's kids suffer is the worst. Best wishes.
(Yeah, having the Mayo people work this is the best thing to do, I think. That's what I'd be trying for in similar circumstances)
Jesus fuck and quadruple ugh, Al. What a nightmare. Good luck and love to her.
so sorry, AL. good luck with mayo!
hi dona! of course I remember you. I have to stay here until at least the 12th till my laminated real OR ID comes. I cried yesterday on the floor of the study while my mother-in-law was in the room. very adult. so mature. wow.
Just want to chime in to say this is terrible. Hoping an answer will be figured out. There is definitely something with chronic pain where it seems as if the pain nerves get stuck in the "on" position.
It must be even worse for a teenager since they don't usually have the "this too will pass" that can help adults. I'm just imagining that it must seem to her that this is going to go on forever. The poor kid.
Oh my god, this is terrible. I'm so sorry you, your daughter, and the rest of your family are going through this.
(You won't know me, but early last decade we sometimes commented on the same posts.)
Have you thought about reaching America the long way round? If you split the trip into five hops (across the Indian Ocean, up to the eastern Mediterranean, across to Western Europe, then across the Atlantic, then across America) and took a few weeks to recover between flights, might girl x find that more manageable?
I think crying wherever the hell you want to is a-ok. I've gone the chronic illness route myself in the last few years, and Christ it's exhausting enough to be your own advocate, let alone your child's. Whatever you need to do right now is what you need to do. Seriously, you could therapeutically kick a puppy and I'd be like, well it barked a lot.
Alameida, very much sympathy. I developed a similar spread of symptoms at 15, and have gone through permutations and complications ever since. (I'm 50 now.) I will look at my backlog of notes and stuff to see if I have any pointers for stuff to suggest to doctors. On the sufferer's end, two things right off:
#1. Arnica oil (not the homeopathic gel stuff, the for true incredibly slidy oil) makes an awesome topical pain reliever. I use it on pain-prone areas (for me, the back of the hands and tops of the feet are high on the list) as needed.
#2. 1000 units or more a day each of MSM, chondroitin, and glucosamine (easily found blended together) do a ton of good things for joint and connective tissue weakness and pain. When I keep up with them, I don't suffer from carpal tunnel pain or need use a cane because of weak knees; if I let them go for a month (thanks to depression or whatever), I do, until I get back on track with them. Not a miracle cure, but something that can really tip your body's own processes one way or the other.
If you use Google+, feel free to add me to your circles and I'll add you back. I have a social scene rich in people with bizarre health problems who love to help. In the meantime, will see what I have at hand in the way of possibly useful info.