By Adem Lewis / in , , , , , , , , , , , , , , /


– When you’re chronically ill and you have to do special
things to care for your body, a little bit more goes into
preparing for natural disasters. (cheerful music) Going on our adventure. – Oy, you’ve got freezing cold hands. (laughing) – Good Tuesday morning, everyone. Going down the stairs, taking a break. Going up the stairs is
a big struggle for me. I usually need Judd or my mom to help me, or it’s just this very long,
slow, difficult process of me like crawling up, Judd says I look like the Grudge when I go up the stairs. Going down the stairs is a bit easier. I just go down on my butt like this and then take a break when I need to. Anyways, this morning I
was having a bad hair day, and I wanted to share with y’all
what I do on bad hair days. I use a headband and dry shampoo, and the dry shampoo I really like is called Not Your Mother’s Clean Freak, so, that is my bad hair day remedy, if any of y’all were interested. But Harlow you always have
good hair days, right? I am just uploading the vlog this morning, and I turned on the news to find out more about Hurricane Irma. Paul and Jenese texted me this morning saying it’s been made a
category five hurricane, so definitely need to get some updates. Okay, Irma is a cat five now, and we still don’t know the
exact path it’s going to take, it’s just too early to tell. Some plots show it going up
the east coast of Florida, straight up the middle of the state, to the Gulf Coast, even other
plots show it going elsewhere, and with each update
there’s new information. You know, we just don’t know yet. Obviously going to the Gulf Coast would be the most devastating
for us here in Tampa Bay. But any path would be
devastating for a lot of people. I’m just praying that it goes
as well as it possibly can, for such a severe storm. We are still sticking with our original hurricane action plan to go to Orlando with Paul and Jenese. We think that is our safest plan, given all the reasons
I gave y’all yesterday, and when my mom gets home from work today, we’re gonna go out and
get all of our necessities and provisions from the shops. The hurricane isn’t really expected to start affecting our area
until the weekend, late weekend, and we are expected to
be in Orlando by then. And besides going out and
buying things for the hurricane, I’m also gonna start prepping at home, because when you’re chronically ill and you have to do special
things to care for your body, a little bit more goes into
preparing for natural disasters. So I’m gonna be as proactive as possible. But we must feed the hippo. Spin! (Harlow ruffing) Okay. With the hurricane, I’m sure some of y’all are wondering how I’m going
to do Harlow’s raw diet, because power outages are
very likely to happen. And, traveling with a
raw diet is not an issue. When we go to see Paul
and Jenese in Orlando on other occasions, we just take her frozen prepped raw meals, put them in a lunch
box just like that one, put freezer packs in there, and then when we get to our destination, we just put the raw meals
in a fridge or freezer. Not a problem. But with the hurricane, I’ve decided I’m gonna switch Harlow to
kibble for the time being. If the power goes out then there is no way to preserve her meat. It’s going to go bad and she can’t eat it, and feeding her kibble
is just gonna be easier, it’s going to be less stress, and I think with everything else going on during the hurricane, that is
a totally reasonable reason to feed her kibble through
the duration of the hurricane. And of course when the hurricane’s gone, I’ll put her back on a raw diet. I think she’s gonna do
fine with the switch, of course I’m gonna watch
for any tummy troubles, and, you know, the reason I feed her raw is because I just think
it’s a better option for Harlow versus kibble. And I’ve seen great results
from feeding her a raw diet. But sometimes extraneous
variables like a hurricane call for feeding her kibble
for a period of time, and I think that’s totally okay. So, that’s what we’re gonna do. I made it upstairs, and I’m gonna start packing
my medical supplies, and we are a few days
out from the hurricane but I like to pack my
medical things early, because that way if I’m missing anything, I have ample time to gather what I need. I’ve got my pill organizer
set up for a week from when we leave for Orlando, plus I’m bringing all of
my bottles so I have extra, and I’m not set for any refills
any time soon which is good. And I need to bring my Nebulizer plus all my breathing
treatment medications, but I can’t pack this right now because I still use it twice a day. Now I’ve gotta go in the other room. So what’s really awesome
is, all of this stuff, my port care stuff, like
the enclaves to my port, the swab caps, the biopatches,
the Tegaderm back there, and the needles for my port, the tubing for my infusions
which are over here, you know these big bags that
have to be refrigerated, and the vitamin vials for
my banana bag infusions, and then you’ve got the flushes, the saline flushes, the heparin flushes, the port start kits, like all this stuff, that takes up so much room, is set to be delivered on Thursday. My home health care
company was really awesome, and worked with our hurricane action plan, and since our goal is to
be with Paul and Jenese no later than Friday, they
decided to send our delivery to Paul and Jenese’s house. So we don’t have to worry
about taking all this stuff with us from Tampa Bay to Orlando. And we don’t have to worry about keeping the infusion
bags refrigerated, it’s just a lot less to worry about getting from point A to point B. So I really appreciated that. Everything is gonna be
waiting for me there when we get there. So all I really need to worry about is probably bringing like
a few extra supplies, because it’s better to be over-prepared than under-prepared with this, and also making sure I
have my IV medications, the syringes for the IV medications, and all my feeding tube supplies. And in here we have just that. I call this my feeding tube drawer. So, we’ve got Grip-Lok which kinda just holds my
extension tubing in place, I’ll bring a couple of those. Enough gauze for at least a week or two because that’s what I use
to clean my feeding tube. All of my tubie pads, this is the extension tubing that hooks up to my G and J port, they each last a week,
and I’ve got two of each, so I’ll just bring all of that. These are the nutrition bags, they have to be changed every 24 hours, and so I think I’ll bring at least 10 but probably more just to be safe. These are FARRELL bags, it’s for venting and draining on the go, and I can vent and drain over something with the G port extension tubing, but I’ll probably just
bring a couple of these too. So far I’ve got my medications,
my feeding tube supplies, I’ve got some extra port
supplies under there. These are some plungers
for my feeding tube to flush it and whatnot, and I’ve got my syringes
and IV medications here, the Zofran and Benadryl. Now I’ve gotta pack my
nutrition, all of the cans. That is definitely gonna
take up quite a bit of space, and it’s gonna be heavy. Okay, between that and
some more I’m gonna put in another bag, I should be good, but I have to leave some
room in here for my Nebulizer and other things like clothes, toiletries. I’ve gotta pack Harlow’s things too, so, I think we’ll be good. I had to come lay down. I am getting a bit worn
out with all the packing. But, like I said, it’s
good to be prepared. We are not in a state of panic, but rather in a state of preparedness. So, anyways, there are a few other things we need to prepare ourselves
for and make plans for, like the power outage. Like me putting Harlow on kibble, because that might happen. I’m not saying a power outage
will happen, but it might, and it can affect some
things related to my health. For example, I am heat intolerant, very much so, due to my dysautonomia. And if the power goes out the AC goes out. It makes me very prone to fainting a lot, and it’s very dangerous for me. So if the power goes out for
an extended amount of time and it becomes hot,
what are we going to do? We most likely won’t really
have an issue though, because one, Paul and Jenese are putting their AC ridiculously low, so if it does go out it’ll take a while for the house to become hot. But also, sometimes it
actually becomes cool during a hurricane, because
of the climate changes. So that’s not something that’s
totally worrying for me. But another concern are my infusion bags. Because of the type of pump I use, air has to be siphoned out of the bags and after that happens they must be refrigerated
to keep them sterile. If the power goes out,
the fridge stops working, and they’re gonna reach room temperature after a certain period of time, I can’t use them anymore
because they’re not sterile. And if that happens, I
can’t get my banana bags, my electrolytes could go out of balance, I won’t be getting the nourishment I need because my banana bags compensate for what my feeding tube
formula doesn’t give me, and the infusions also help a lot with my postural orthostatic
tachycardia syndrome. So, that could also be an issue. Of course there is also my Nebulizer. I do breathing treatments twice a day for my asthma and my mast
cell activation disorder. It plugs into the wall so
it needs electricity to run. And it’s not good to skip treatments. If I miss one, it’s not a huge deal, but it does put me at risk for my asthma becoming more prominent. But I do have other preventatives, such as my maintenance
inhaler I use twice a day and medications, but for my
mast cell activation disorder, I do have other medications I take but anytime I miss one,
it puts me more at risk for symptoms including anaphylaxis. So that’s also a concern if
I can’t use my Nebulizer. And then, there is my feeding tube pump. It runs on a charge. I charge it every night to make
sure it has a full battery, and if the power goes out
and I can’t charge it, it could die and I wouldn’t
be able to get my nutrition because I have to be given nutrition at a certain milliliters per hour. I cannot do bolus feeding,
which is where you just, give yourself a bunch
of formula at one time through the syringe. I have a J tube, and my
body just can’t handle that. I have to be given continuous feeds, and that’s what the pump does for me. Now at a full charge, the
pump can last about two days, so I’m not totally concerned, but if we go without power for that long, the pump could die and I wouldn’t adequately receive my nutrition. So here’s what we’re going to do. I’m going to continue
my treatments as normal, and go into this thing hoping for the best but preparing for the worst. If we do lose power for an
extended period of time, Paul’s parents have a generator,
so we’ll head over there. And if things get really bad and start to really
negatively affect my health, then I’ll head to the
hospital for treatment. Because that’s the best place for me to be for emergency medical attention. You know, a storm like this
can be really intimidating, but I’m not in a state of panic. Rather in a state of preparedness, because the more prepared
I am, the better. Alright, we are out. My mom is here, we’re going to the stores, pretty sure the stores are
cleared up of supplies by now. This is the first chance we
got to go out, unfortunately, but we’re still going to try
and see what we can find. Thankfully Paul and Jenese have told me they’re pretty well stocked up. But I think it’s better
to have extra supplies than to not have enough, so that’s why we’re still going
out to see what we can find. They did give me a list
of some specific things they’d like for me to try and find, so, we are going out to try and get as many necessities as
possible for this hurricane. Made it into Sam’s Club, and
the first thing we notice is nobody’s walking around with water, so there’s no water, but luckily, there’s a lot of non-perishable snacks. So that is what we are stocking up on. (shoppers talking) How you doing Har? You look happy. So I basically just got a
bunch of non-perishable snacks, and juice, because there’s no water here. This is basically what Paul
and Jenese told me to get, and what they really needed. They have a bunch of stuff
already though, like I said. Paul also found a bunch
more water in Orlando, which is great and we’re still
on the search after this. Well, that was a bit hectic. Everybody was in there
just getting what we need for the hurricane, and, like I said Paul and Jenese have a
big bulk of supplies, so we should be good. And they’re just telling me what they need for me to like supplement
their supplies with. So that’s exactly what I
got, non-perishable food, we’re still looking for a few other items. My mom found tea that she likes. So you got your tea, right mom? – Yeah, so I got tea for
24 days, one tea a day. And then the crackers of chocolate, because she doesn’t eat really, so I can live on crackers
and tea for two weeks. – We made it home and I am exhausted, but really glad we got that done, because we got most of what we needed to add to the supplies
Paul and Jenese have. Though, I gotta say, the food is not really
stuff I can tolerate. You know, if the power does go out, I’m gonna be relying on
my feeding tube formula, and Graham crackers. But Paul is really excited for the Oreos. Oh, I can do the juice too, which is nice. We did go to a few other stores to get some other types of supplies like extra flashlights. Did not find any water,
but Paul and Jenese are pretty confident in the
amount of water they have, which is great, and yeah, we’re just trying to be
as prepared as possible. And now we’re gonna turn on the news to get some more updates
on Hurricane Irma. I don’t know why she was laying like that, with your head stuffed
in the pillows. (laughs) We are ready for bed, and it
does look like Hurricane Irma is still headed for Florida. But there are some predictions showing that it may go back out
towards the Atlantic, and I’m gonna hold onto that hope, but I’m grateful we’ve
adequately prepared for it. In case y’all are wondering, my mom and dad have good
action plans in place as well. They’re gonna be staying with
friends and family in Orlando. They have prepared, and Judd
and I are still planning to go stay with Paul
and Jenese in Orlando. We are expected to be
there before the weekend. I’m fairly certain with Judd’s work he’s gonna have responsibilities somewhere within the state of Florida
regarding this hurricane, but we’ll have to wait and see. And I am praying that things just go as well as it possibly
can for everyone affected. And with that, I will say goodnight, and thanks for joining
us on our adventure. (upbeat music)


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