[vbactivist]

Do any of you, who are dealing with your own or your child's chronic illness or special need, ever worry about if certain medical technologies were made unavailable? Whenever I read about people saying if a bomb was dropped, or what have you, getting on their bikes and heading out to the country (for example), I always think, "that couldn't be me". I need electricity for my medication. And I need the medication to stay alive. What do people do in situation like war/natural disasters/RV living if they DEPEND on technology to keep them or their child alive?<br><br>
I am interested to hear your thoughts...<br><br>
I was started reading a book "Dies the Fire" I saw recommended here a while ago and it got me thinking (I didn't finish it, because the writing was awful. But I did enjoy "The Road" by Cormac McCarthy) and no amount of planning would save me, making me unavailable to help my husband save my children.

 

[FuzzyOne]

yes. i am a worrier by nature and i do worry what we would do if we couldn't continue our current course of treatment for our ds because of the above mentioned reasons.<br><br>
i don't have a total plan, but i do have some ideas what we would do. his life doesn't depend on his current treatments, but his quality of life certainly does.

 

[vbactivist]

Thanks for your response Fuzzyone. It's frustrating for me, because often there will be threads here (in general on the board, not particularly SN parenting) where people talk about being so self sufficient. Sometimes as if you're not self sufficent, it's because of poor planning or something. Because of my health condition (Type 1 diabetes) I will never be able to be self sufficient <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"> It worries me, not so much for myself, but for the lack of care i'd be able to give my children. I do wonder what people did in Katrina, or gaza, etc...

 

[2bluefish]

I'm working on something of a plan. We lost power due to a hurricane last year - we're pretty far inland - it was just a day long wind storm for us. Mixing up Juju's formula was a big issue - at the time it required a blender, refrigeration, bottle warmer, etc. Now it is simpler, as long as I have a goat, I'm ok. Water was an issue too - we are on a farm with well water from a communal well. We would have been hauling buckets of water from our pond for the livestock if the power had been off too many more days. There was no clean water for washing up bottles, etc. I really want to figure out how to put in a hand pump.<br><br>
I read "The Road" too - it reminded me alot of my journey with Juju. I believe I am pretty much his "whole world entire".

 

[pixiekisses]

We could never do that. We depend on so many things that are right here. We basically need there to never be such a situation, our little miss cotton ball button wouldn't make it very long.<br>
I think I'm gonna read <i>The Road</i>.

 

[MotherWhimsey]

If we were without power for long my kid would die. There's no amount of planning that could do much of anything. My DH works for a nuclear facility and I'd think they'd be one of the last places to loose electricity, so if something that extreme were to happen I'd hope they'd let us in there. Probably wouldn't though. My kid can't control his body temp in any weather that's not between 65-70 degrees (and outside he can still get funky in that span because of things like wind or sun). He needs a pump to eat (which means power to charge). A machine and o2 to breathe (that pesky power thing again). Forumla and supplies delivered monthly. And monitors to tell us how his body is doing. So we wouldn't make it long without power.

 

[karne]

Your title of this thread kind of freaked me out.<br><br>
But, yes, nebulizers usually need electricity. I need to check on anything that battery powered. The inhaler would be an option of last resort for my child.

 

[BookGoddess]

Strange that you should ask this question because I've thought about it. My DD's SN don't require her to have specialized equipment that would require electricity. I worry more about whether she'll have access to her refrigerated supplements. I also worry because of her sensitivities to foods we'll have access to enough of the foods that she can eat. She can only drink certain types of milk, eat only certain types of veggies and fruits and grains. She needs to have her enzymes with food to help her get the most from what she eats. She gets probiotics but those have to be refrigerated. So do some of the other meds she takes. Does she HAVE to have these refrigerated supplements and medications? No. Will she die if she doesn't have these? Probably not. But will her level of functioning be affected? Most definitely yes.<br><br>
Honestly if some terrible calamity came to pass say like a nuclear attack or a giant asteroid hitting the Earth, I think I'd want my family to die quickly (and without too much pain) instead of surviving.<br><br><br><br><div style="margin:20px;margin-top:5px;">
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<div>Originally Posted by <strong>pixiekisses</strong> <a href="/community/forum/post/13318821"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">I think I'm gonna read <i>The Road</i>.</div>
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I don't want to spoil it for you but it's a pretty depressing book. There's some pretty graphic stuff in it. I felt upset after the book because I honestly could see that future happening if some enormous catastrophe happened in the world.

 

[pixiekisses]

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<div>Originally Posted by <strong>BookGoddess</strong> <a href="/community/forum/post/13318981"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">I don't want to spoil it for you but it's a pretty depressing book. There's some pretty graphic stuff in it. I felt upset after the book because I honestly could see that future happening if some enormous catastrophe happened in the world.</div>
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Oh, maybe not read it then.<br>
I think I'd like to continue not thinking about this because it really freaks me out thinking that my child will die if something like that happens.<br>
So I'm gonna agree with you on the quick death part if something horrible should come.

 

[QueenOfTheMeadow]

Here is the link to the thread in H&H.<br><a href="http://www.mothering.com/discussions/showthread.php?t=1051791" target="_blank">http://www.mothering.com/discussions....php?t=1051791</a>

 

[vbactivist]

<div style="margin:20px;margin-top:5px;">
<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">
<div>Originally Posted by <strong>pixiekisses</strong> <a href="/community/forum/post/13319049"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">Oh, maybe not read it then.<br>
I think I'd like to continue not thinking about this because it really freaks me out thinking that my child will die if something like that happens.<br>
So I'm gonna agree with you on the quick death part if something horrible should come.</div>
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I agree about the quick death, too. I am thinking more along the lines of a long term, yet temporary hardship. Like war, or something. Weren't there people during Katrina who were stranded without meds or whatever that they needed? Or what about in Gaza? I worry that something will come up, that, without my special need, my family could survive. But with it, they can't. So, I'm looking for ideas, or reassurance, or something....

 

[vbactivist]

Ultimately, my daughetr could not live without access to medical care either <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"> It makes me very sad to be dependant on medical technology.

 

[2bluefish]

I don't know how Juju would do without seizure meds...<br><br>
I have to say "The Road" didn't depress me, but I was ready for it. I passed it by several times and waited until it called to me. Maybe the fact that I was already depressed and grieving changed my perspective. I found it rather life affirming in the end.<br><br>
I don't know how much I should spoil it, but the worst part is looking at how humans might treat other humans. If we can love one another, I think we can survive.

 

[lil_miss_understood]

I'm a semi-SNP. My kids have food allergies/intolerances (as do I) as well as one having asthma (as well as myself). Our asthma is controlled by removing our allergens and occasional inhaler use. However, I also have hypothyroidism which is controlled by HRT (hormone replacement therapy) at present. I'm trying to figure out some way to treat it naturally- nutritionally, I mean (the ladies on The Thyroid Thread are being helpful as is my ND).<br>
We have no life-threatening food allergies (although one is IgE mediated so does have the potential) of which I'm aware... so if worse came to worse we could eat "unsafe" food... Life would just be miserable.

 

[LionTigerBear]

We do not depend on electricity right now, but if we did, we would make saving up for a large, independent generator a top priority. (We would buy a smaller generator first, I suppose, and work up from there. A small generator can be purchased for as little as $250 but I don't know how long it would work.) As it is, we plan to buy a generator some day when we have our own land, because emergency preparedness is a priority for us anyway, and when we have one I would hope that people in our community would know where we were and come to our home if they had medical needs for electricity. It makes me think how it's too bad that so many people today are disconnected from their neighbors. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad">

 

[vbactivist]

<div style="margin:20px;margin-top:5px;">
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<div>Originally Posted by <strong>LionTigerBear</strong> <a href="/community/forum/post/13321744"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">We do not depend on electricity right now, but if we did, we would make saving up for a large, independent generator a top priority. (We would buy a smaller generator first, I suppose, and work up from there. A small generator can be purchased for as little as $250 but I don't know how long it would work.) As it is, we plan to buy a generator some day when we have our own land, because emergency preparedness is a priority for us anyway, and when we have one I would hope that people in our community would know where we were and come to our home if they had medical needs for electricity. It makes me think how it's too bad that so many people today are disconnected from their neighbors. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"></div>
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Well, I've thought about this, but the only generators I've seen are gas powered. And how much gasoline can we really sotre? Also, I can only store so much insulin - it expires. I have about a years worth, but without refrigeration, it would go bad much sooner. What if the pharmacies coudn't store or produce it?

 

[lil_miss_understood]

<div style="margin:20px;margin-top:5px;">
<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">
<div>Originally Posted by <strong>LionTigerBear</strong> <a href="/community/forum/post/13321744"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">We do not depend on electricity right now, but if we did, we would make saving up for a large, independent generator a top priority. (We would buy a smaller generator first, I suppose, and work up from there. A small generator can be purchased for as little as $250 but I don't know how long it would work.) As it is, we plan to buy a generator some day when we have our own land, because emergency preparedness is a priority for us anyway, and <span style="text-decoration:underline;">when we have one I would hope that people in our community would know where we were and come to our home if they had medical needs for electricity.</span> <b>It makes me think how it's too bad that so many people today are disconnected from their neighbors.</b> <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"></div>
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Regarding the bold: This is considered part of emergency preparedness:<br>
Find out what plans and resources your neighbours are making or have made. (I used to store food for my neighbours- I have a HUGE freezer and they were all told they were more than welcome to use it. It uses more electricity half-empty than it does full anyway. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/winky.gif" style="border:0px solid;" title="Wink"> As well as freezer space, though, I stored one "extra" month of food for each month of food I stored for my family.) I also found out that several of my neighbours had small personal generators that they used for camping. We came to the agreement that, in the event of emegency, keeping the freezer running would take priority over personal comfort.<br>
Regarding the underlined: Once you find out which of your neighbours has a generator, find out what fuel it runs on and "stockpile" some of it. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/thumb.gif" style="border:0px solid;" title="thumbs up">

 

[LionTigerBear]

<div style="margin:20px;margin-top:5px;">
<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
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<div>Originally Posted by <strong>vbactivist</strong> <a href="/community/forum/post/13321769"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">Well, I've thought about this, but the only generators I've seen are gas powered. And how much gasoline can we really sotre? Also, I can only store so much insulin - it expires. I have about a years worth, but without refrigeration, it would go bad much sooner. What if the pharmacies coudn't store or produce it?</div>
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Right, that is definitely a downside to gas-powered generators. There is also the option of a propane-powered generator. They have info about both and a photo of a propane generator set-up at <a href="http://www.closertonature.com/emergency/emergency-generator-part-1.htm" target="_blank">this emergency preparedness blog</a>.<br><br>
As far as insulin, I don't have any answers. My approach would be to try to find any possible holistic alternative that could either 1.) heal you (not to underestimate the seriousness of your problem, but that's what I would look for first, you never know) or 2.) buy you any amount of time.<br><br>
In our family, we have lots of food sensitivities-- to dairy, rice, corn, wheat, sugar, and other things. Our symptoms are varied and bad. We went on a diet called the GAPS diet and all of our symptoms went away. We went off ofthe diet too soon-- sooner than we were supposed to-- and found that at first, we could tolerate all of our "bad" foods just fine. It took some 6 months or more for our symptoms to gradually come back. Now we are going back on the diet and if we can, we will follow it for years this time-- hopefully until we are fully cured-- however, it comforts me to know that even without total healing, in the event of an emergency, we can eat our emergency storage foods (things we don't usually eat) without too much ill effect for several months.<br><br>
I don't know of any such diet or healing modality for your health issue, and maybe there is none, but that's the kind of thing I would look for. GAPS is almost unheard of still (more so even a couple years ago) so I really had to dig deep to get the info I needed.

 

[LionTigerBear]

<div style="margin:20px;margin-top:5px;">
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<div>Originally Posted by <strong>JacquelineR</strong> <a href="/community/forum/post/13321739"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">I'm a semi-SNP. My kids have food allergies/intolerances (as do I) as well as one having asthma (as well as myself). Our asthma is controlled by removing our allergens and occasional inhaler use. However, I also have hypothyroidism which is controlled by HRT (hormone replacement therapy) at present. I'm trying to figure out some way to treat it naturally- nutritionally, I mean (the ladies on The Thyroid Thread are being helpful as is my ND).<br>
We have no life-threatening food allergies (although one is IgE mediated so does have the potential) of which I'm aware... so if worse came to worse we could eat "unsafe" food... Life would just be miserable.</div>
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The GAPS diet might actually work for you and your children. It's worth looking in to.

 

[MoonWillow]

I worry about my daughter with multiple life threatening food allergies and asthma. I don't know what we would do. I think I am with BookGoddess in that I would prefer a quick end. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad">