So, there were two pieces of news I thought I would share with you all today –
First, we’ve raised $800. This means that we’re about a quarter of the way there! I…can’t find words to thank the people who have donated enough. I feel so very unworthy of this kind of help, and utterly humbled by the willingness of people to help a friend of a friend, a complete stranger.
Second, I’ve found out that I may be able to stay with a host family. I won’t know for certain until the end of the month, but this would reduce my costs dramatically! I wouldn’t have to pay for a hotel, and I might have the ability to cook myself dinner in their kitchen (though having the energy left to cook after a full day of training with Hudson is an iffy proposition).
Best,
~Kali
Brilliant Mind Broken Body 
Me again. Might remember me from Reddit. I was the non-believer. 🙂
If you can stay with a host family, perhaps you would consider cooking up a bunch of large meals before you leave and freezing them. That way a few minutes in the microwave after training, and you are good to go. I’m sure you’ll have the energy left over to press “2 minutes” and “start”. 🙂
As I am someone with dietary constraints, I’ve gotten very used to the idea of cooking in advance and carrying food with me when I go on trips. A nice big tray of lasagna or tub of spaghetti freezes and travels nicely.
Just a thought.
Good luck!
If my host family has freezer space available to me, I’d be willing to bet my boyfriend would be up for making batches of food for me. One of the…ah…fun consequences of EDS is that I don’t cook things in large batches because I can’t move them around without risking dislocations to my shoulders, wrists, and fingers.
That’s a really good idea, thank you for suggesting it. Sometimes when you’re trying to figure out how to make the big picture work, it takes someone else pointing out how you can make the details work.
I apologize, I hadn’t realized the full extent of EDS would limit your capacity to move large trays of food. I shamefully profess ignorance about the entire subject, something I will shortly rectify.
To a limited (highly limited) degree, I can relate to some of what you may be going through. I mentioned earlier that I had dietary restrictions. Well, they are fairly tight restrictions with rather unpleasant consequences if I violate them. Everything I do has a consideration towards diet. Have I eaten enough today, do I have enough energy to do this (a wickedly unbalanced diet leaves me with very short energy reserves), are we going some place that I can eat at, do I trust this product or that kitchen, etc. Every time I go out, I consider the dietary ramifications. In your case, it sounds like the same thing, except about mobility and physical capacity. Every action or potential action requires a personal assessment. Do I have enough energy to do this? Can I do this right now? Something that those around you never ask themselves. A constant measurement of what you are able to do at this moment. In that sense, I can relate.
So I apologize for thinking you may be untrue in your motives (I saw your recent post about how my suspicion was hurtful), and I apologize for not considering the physical constraints when it comes to meal preparation.
EDS is…an odd beast to live with. Some of us, in our youths, are very good athletes or dancers. I was told I was an amazing natural in ballroom, pity I picked it up so close to when I developed what is probably secondary fibromyalgia.
For me, the small joints in the hands are the most severely affected according to the doctor. The joints I’m the most aware of injuries to tend to be my left shoulder and left hip.
If you don’t mind my curiousity, have you got some combination of celiac and something else, or am I guessing off-base?
My own diet is…I suppose you could say lightly restricted. With the exception of raw onion-family vegetables (which the slightest bit can make me sick), I have a lot of foods I can have only in precise portions. Currently, I’m much more heavily restricted – we’ve begun to suspect a systemic candida infection, which basically means everything that’s low glycemic index has been booted out of my diet temporarily. It’s been making me incredibly cranky, as food is one of the few things I have left where I can enjoy myself at near my prior level.
Are you familiar with http://www.butyoudontlooksick.com? You might enjoy the boards there – there’s a lot of discussion of living with chronic illnesses, how to make things work better, and there’s an area where we toss around recipes and whatnot (and not a few of us have restricted diets of some variety). The creater of the site discussed that kind of constant measuring in her ‘Spoon Story’, also on the site, which is a rather entertaining read and a good way to explain this kind of life to others.
I feel a little foolish for being hurt that people were suspicious – this is the internet, after all, and heaven knows we’ve had enough Nigerian schemes and their ilk to be suspicious. That the skepticism surprised me is…well, I suppose it shouldn’t have. I accept your apology on that count.
On the other, you needn’t apologize! One of the biggest things that I’ve learned since I became disabled is that the needs of individuals vary so wildly they’re nearly impossible to predict, even when you’re talking to people who have the same disability. I’d prefer to have an open dialog where people can make suggestions and the recipient can use them (or not) as it suits their needs – I know I’ve made recipe suggestion faux pas to a friend who has lots of food sensitivity (thank god I was suggesting and not feeding her!)
At any rate, please feel free to follow, comment, and generally have a dialog with me. You’re welcome here in my little corner of the web.
You are on the button with Celiac Disease. I’m a lactose intolerant Celiac. I became “active” when I was very young, though it took a few years to diagnose. Almost didn’t survive it. As a result, my “insides” are pretty messed up. The slightest introduction of gluten can have disastrous effects. Celiacs come in all varieties and severities, I happen to be particularly sensitive.
Not having long-burning carbs in my diet, I find that I am always having to replenish my supply. Otherwise I get very sleepy. Sort of like a tape player running low on batteries. Things make less sense, my visual acuity drops, everything gets heavier, the whole song and dance. It wouldn’t surprise me to discover I was borderline diabetic.
As it stands now, I am doing quite well. I make all my own food (“and,” he said boastfully, “I am a pretty decent cook.”) and am a walking dietary encyclopedia. I have a number of fantastic recipes that range from hoity-toity (a delicious pheasant recipe with a side of cream of roasted red pepper soup) down to fun and casual (I make a wicked plate of fully-loaded nachos). I’ve actually managed to reach an average weight for my height, which is awesome (always been ridiculously underweight).
I hadn’t seen that website before. I will check it out. It looks interesting.
I just read about systemic candida infection online… there seems to be a lot of conflicting information. None of them mention using a probiotic to help regulate the bacterial flora in the intestinal tract. I wonder if that would be helpful at all? Not being a physician, all I can do is speculate. 🙂 I know I’ve used a probiotic to help control my internal issues. One of the unfortunate side effects of CD is excessive bloating. With a probiotic, I can drop from the 7-months pregnant look down to my usual 30 inch waistline. Literally dropping pant sizes in hours. It’s ridiculous.
I hope your training works out well. I’ll try to kick some money into the pool as soon as some loosens up.
Cheers!
I suspected that. Celiac seems to be one of the most intensely restrictive food sensitivities. A very dear friend of mine is also extremely sensitive. If you’re interested, I do tinker with food a bit and have created recipes for some wickedly good almond cookies and a variation on the handed down through generations family cheesecake recipe. (edited: wow, I’m a spectacular idiot sometimes, I completely missed the lactose sensitivity as well. Er, sorry!) (edited again to add: I’d like to plug a friend of mine, who is celiac and posts a lot of recipes and other food stuff in her blog – http://glutenfreeincleveland.blogspot.com/)
For the candida infection, my doctor has me taking acidophilis tabs and oil of oregano. After reading through all of the stuff online, the one thing that really made sense to me out of all of it was the need to control blood sugar, and so having to choose low glycemic index foods. It has made me perfectly miserable – I’ve got a terrible sweet tooth and an immense fondness for potatoes (blame my Irish heritage for THAT bit).
It’s so wild what these invisible illnesses do to us, isn’t it? I can’t imagine watching my waistline shrink like that (though after the recent 25 pound gain due to my thyroid going nuts, I’d sure like to!)
Thanks, I really appreciate it.
lol Don’t worry about the dairy bit. I hardly think about it. I carry Lactaid with me at all times, so Lactose Intolerance really is a 10 second inconvenience more than anything else.
I would be interested in the cheese cake recipe. I have a wicked sweet tooth. 🙂 I do experiment with quite a bit of cooking, and I find that Bette Hagman’s line of Gluten Free cookbooks to be spectacular. But more is better in this case. 🙂
Yeah, if I didn’t have my sugar, I’d be pretty cranky. 🙂 Eating low-glycemic index foods all the time would be very tough.
As for the Irish heritage, I too am Irish (somewhat). Actually that’s where my CD comes from. It’s sometimes known as the “Irish connection”. It’s maternally recessive, so I picked it up through my mother’s side of things. Being male, I cannot spread the gene to any offspring I may be cursed (er, blessed) with.
The impact one small thing like this can have on one’s life is stunning. If I eat the wrong thing, I am shut down for the entire day and sore for the entire week (and sometimes month). Even trace amounts can have psychological reactions (irrational irritability, depression and even paranoia). I think that until someone has lived with a “hidden illness”, they just can’t appreciate how big of an impact it can have.
Sent the recipe to your email address.
I still have guilt on my conscience from being involved in the accidental glutening of a girl I knew in college. We were in the same study group, which was meeting at my apartment. I brought out tea, and she had a cup of Stash’s raspberry herbal tea…which it turns out is not gluten free. I felt terrible, even though she was the one who selected which type of tea she drank.
I don’t know what I would do if I added celiac to my pile of other diagnoses. This past Fall, I was actually being tested for it. Turns out I don’t have it, I just have IBS and a hiatal hernia, which was one of those results you get terribly mixed feelings about – on the one hand, other than caffeine and alcohol, I didn’t have to cut much new stuff out of my diet (though a lot of things are now in moderation only), but on the other hand, IBS is very difficult to treat, so the GI problems are rather unpredictable and unstoppable.
I absolutely agree about people just not getting how much impact a ‘hidden illness’ can have. I can remember making an offhand remark to a friend that the distance to my car was a bit of a hike, and then saying that it was about 5 blocks, and he blinked at me and said ‘That’s close!’ Not for me, it isn’t.
Which is part of why I’m keeping this blog – so that people who don’t live with a disability can get a little bit of a view into what it’s like.