Good news!! My sister, who has a stinky butt, is shipping her European, 220Volt Vitamix to our host family in Sweden! She won't tell me how much it cost to overnight the blender but said it was my Christmas/Birthday present. So, perhaps her butt is not so stinky...I will have to think on this...
The good thing is, I will not need to bring the 30lb 220volt - 110volt converter with me to Sweden. Plus, I won't need to pack my blender!! Do you realize how much weight this will save us?!?
However, we are not going straight to Sweden on this trip. We are spending a night in New York, then two nights in Copenhagen before we take a train up to Varberg. So, I will need A LOT of Real Food Blends (26 meals, by my calculations) to get me to Sweden. I had meals sent ahead, and those will be my lunches while we're there, but we are spending another night in Copenhagen and one night in New York on the way home. This will require twelve more meals for the return trip. 38 meals total that I need to pack. This is quite a bit of weight, but we can spread the meals out between all our bags. The bags will get lighter as time goes by and leave room for souvenirs.
If any bags get lost, I will need to subsist entirely on alcohol. Pretty sure it can be done. Also, a lot of restaurants have Vitamixers, so I can always wander around until I find one to blend my food during our days in New York and Copenhagen.
In other news about things you need to know, but secretly don't want to know, I have to carry a heavy suction machine with me on trips. This is to suction the drool and prevent it from collecting in the back of my throat. I also bring multiple dish towels to spit into. Up until now, we have carried the suction machine in this cumbersome bag:
Make your bed!
That bag becomes extremely painful on my shoulder after carrying it through multiple airports.
Ok, let me rephrase that. That bag becomes extremely painful on Betsy's shoulder after carrying it through multiple airports. So, we were looking at luggage and decided to get one of these small roller suitcases for my suction and other carry-ons:
Ever seen a one-armed guitar player? Me neither.
This will make navigating airports a whole lot easier. The only thing is I need to empty the suction container frequently because if it ever spills into that nice bag, it'll become a biohazard.
We leave tomorrow!!! The big dog is bummed we're leaving him, but our neighbors are over here frequently and they take him on better walks, so I think he's secretly happy.
Ok, it's been a while since I wrote a post, so let me get you up to speed.
I'm still alive (obviously). I'm getting better at my prosthetic arm. In fact I took it fishing just a few weeks ago, but the first fish I caught jerked my fishing pole out of my prosthetic and swam off with it. So, now there is a fish swimming around this lake in Georgia with a $20 fishing pole trailing behind it. Oh man, that reminds me of the most hilarious thing that happened--
AH THERE'S NO TIME FOR THIS!! I'M LEAVING FOR SWEDEN IN LESS THAN ONE WEEK!!!!
"Why Sweden?" you ask. Our daughter, who is now 11 and has stinky feet, plays soccer. Or, if you're reading the blog outside the U.S., (hello, Russian bots), she plays a sport called, "WHO CARES WHAT YOU CALL IT! IT'S SOCCER OK?? SOCCER!!!
You think they'll allow my vuvuzela at the games?
Anyway, her coach is Swedish and he and his wife are originally from a lovely town on the southwest coast (Varberg). He entered our team into an international soccer tournament called the Gothia Cup, which takes place in Gothenburg. Gothenburg is right up the road from Varberg. This is fantastic because he has set the family of each team member up with a host family in Varberg and we only have a short train ride to get to each game. So, I don't need to worry about blending my meals in a cramped Swedish hotel room. Instead, I have access to the lovely kitchen of our poor, unsuspecting host family, who have no idea, a) how loud a Vitamixer on high can get, and b) how stinky my daughter's feet are. They are like, next level smelly. After a soccer game, you do not want to be in the same living space as those feet.
So, I'm packing for Sweden and I have some concerns. Well...one rather heavy concern. If you're an avid reader of my blog, then you've been extremely bored for the past couple years because I've written NOTHING. You also may recall that I took a trip to Germany in late 2015. I also did it in 2009, I think? So I have some experience traveling in Europe with a feeding tube. There are some slight differences this time though. My sister, who has a stinky butt, lives in Germany with her family and my mom, who is much cooler than your mom. She also has her own Vitamixer, which plugs into European 220 Volt outlets. Having family close by was my security blanket for foreign travel. But unfortunately, my stinky-butt sister and cool mom will not be able to meet us in Sweden during our time there. So, I have to take my own Vitamix and I also need a transformer to convert the electricity to the blender from Europe's 220 Volts to 110 Volts. Not just any transformer either. My Vitamix can get up over 1,300 Watts, so I need at least a 1,500 Watt transformer--ideally 3,000 Watt--to handle the awesome power of the blender's whirling blades. So, I went ahead and ordered this transformer:
Not Actual Size
That transformer doesn't look too big right? We even misread the page on Amazon and thought it was only 12 pounds. The reality is, that sucker is filled with lead and weighs about 30 pounds. How are we supposed to pack it, along with the many outfits I will need, the single outfit I'll allow Betsy to bring, and extra socks for my stinky-feet daughter??
Also, what if this thing doesn't work? How can I test a transformer that only plugs into 220 Volt outlets in the U.S.? It might overload the electrical system of our poor host family's house. It might not work, so I'll be stuck buying a transformer in Sweden, which is twice as expensive. Or if I have no transformer and thus no Vitamix, I could go on a starvation diet with the Real Food Blends I'm bringing. We did have the foresight to ship a couple boxes of Real Food Blends to our poor, unsuspecting host family. But I will still only have enough Real Food Blends for one meal a day, sometimes two. I really need blended meals with the Vitamix to supplement the RFBs. I also really want to try this fermented sea herring called Surströmming that I've heard so much about.
MMMMMMMMM!! Tasty, right?
Since I can't taste anything, I figure I can blend up a few cans of that stuff a day, but I really need my Vitamix to make my Surströmming dream a reality. Another potential issue we may have (there are many) is the World Cup. Sweden is still in the World Cup (go Sweden!). This is awesome, but also a little scary because we are taking a train from Copenhagen, Denmark, up to Varberg on the day of the final game. So if Sweden reaches the final, then it'll be a crazy time to try to get in the country. Sports analysts haven't given Sweden the best chance of beating England, then taking out either Russia or Croatia to make it to the final game. However, this World Cup has been pretty crazy (Spain, Argentina, Portugal, AND GERMANY have all been eliminated??), so I don't think you can count anybody out. The next game is this Saturday against England. Go Sweden!! Beat those bloody English bastards!!!
A year ago today, I had a lot of dead weight in my life. I was a hoarder; holding onto things that left my mind confused and disorganized. Once I got rid of that trash--the useless stuff--holding me back, I was able to focus on the things that really matter: my family, my friends, my community, and my remaining limbs.
You can reorganize your life too!!!!! Do you feel like you're maybe not using all your limbs to their full potential? Is there one you could possibly go without? I've got just the tool to help you eliminate that worthless appendage today!!!!
May require a partner for proper use
Or perhaps this will do it faster?
Don't delay on this. It's best if you act now, even if you've been drinking. Actually, it might be beneficial if you've been drinking. It can be scary to let go of something you've had, literally, since birth--I KNOW! I'm sure you have fond memories using that limb to wave at a loved one, or allowing you to frolic in a grassy meadow, or 'raise the roof' at the dance party, or putting your "left foot in" doing the "Hokey Pokey," or even aiding you as you tie your shoes. But think what you'll gain by not having that limb!!! The lost weight (instant 10-20 pound drop)!!! All your love and attention can be devoted to your three remaining limbs!!! You used to think, Should I wash my left leg or my right leg in the shower today? Well, guess what? Now, you only need to worry about one leg and you're out of the shower in half the time!!! You'll instantly stand out in a crowd. All those other dweebs holding onto 4 limbs will look at you in envy. They'll say stuff like, "How did he DO it??" or "Sure wish I only had three to worry about!!" or even "Is that a man or some sort of sideshow circus freak? DEAR GOD, DON'T LET THE MONSTER TOUCH ME!!" The point is, you'll be the center of attention at every social gathering.
Why stop with your own trash?
7's company, 8's a crowd
Does your significant other have a problem with limb hoarding? Skip the intervention; they won't listen to reason!!! Tonight (don't think about it or second-guess yourself) crumble up some Ambien in their drink. While they're passed out in the surgically sterile master bedroom, use the proper implement...
Might be best to send the kids away during the operation
...to whack off the appendage they can do without (I'd choose the one they keep hitting you with while they're sleeping). They may whine and scream about it when they wake up. They might call you things in the heat of the moment like "monster," or "psychopath," or "demented spawn of Satan." Don't let their rage, divorce proceedings, criminal charges, and lawsuits bother you. You've done the right thing here! You've freed the one you love from something that would have weighed them down for the rest of their lives. You've given them a gift!! In a few years, or after decades of therapy, they'll thank you.
I'm referring to the hand here. And the rest of the arm. Or a leg.
Heck, why stop with limbs? I had way too many ribs filling up my torso. Do you even know how many ribs you have? I was a limb hoarder AND a rib hoarder, and I bet you are too! Sometimes those annoying bones just get in the way!! How can I possibly feel the beating of my own heart if there are ribs and a clavicle in the way?? Do yourself and the world a favor and get rid of that worthless skeletal mass.
I see 205 redundant bones in this picture
**Disclaimer: The blog author is not responsible if you, or your partner, bleed to death.
I have been extremely saddened by the images and videos coming out of Texas and Louisiana over the last week. I could not imagine what it's like to go through an event like that--losing homes, possessions, even lives, to torrential flooding. It is so uplifting to see businesses and private citizens rush to the area to help those in need. From a tube feeding perspective, I was happy to see the Feeding Tube Awareness Group on Facebook had a lengthy thread immediately after the storm hit with people across the country offering various medical supplies for those in need. More recently, they have shared a link to the Parker Lee Project's Facebook page for more information about Harvey relief.
If you'd care to support medically complex kids affected by Harvey, please go to LittleLobbyists.org/Harvey/. They have partnered with the Parker Lee Project, Trach Mommas of Louisiana, Protect Texas Fragile Kids, Advocates for Medically Fragile Kids NC, and Moms of Trach Babies to get money and supplies to struggling families in the region. This is not a situation that will be resolved in a few days or weeks. It will take months, even years, for families and businesses to get back on their feet once the waters have fully receded. Parents trying to feed and care for tube-fed children--on top of losing their homes and livelihood--will need every bit of support we can give over the coming months. If you are able to help, please don't forget about these families. They will need our aid for a long time.
On a more selfish note, the Liebenow household is completely unprepared for a disaster. The situation in Houston following Hurricane Harvey really made Betsy and I re-evaluate how prepared we are for natural--and man-made--disasters. This hasn't been an immediate concern for us because Knoxville seems to be in a lucky part of the country that isn't conducive to natural disasters (at least not while we've lived here). We don't live near the Tennessee River or in a low-lying area, so flooding isn't a concern. We are in the suburbs and, since we moved here in 2009, haven't been subjected to any lengthy power outages. We are hit with the occasional afternoon thunderstorm, but nothing too serious at our house. Tornadoes have been known to hit the region, but again, not our neighborhood. We got a snowstorm once that kept us from driving for a couple days, but still had power.
We've gotten lucky, but that's no excuse for not making some preparations. We have important documents in a fireproof safe and Betsy has her parents and two sisters within a mile of us, so we have a good support network in case of our house burning down or something like that. But we aren't ready for a more widespread disaster like an alien invasion (Independence Day), Russian invasion (Red Dawn), hybrid robot/car invasion (Transformers), meteor impact (Armageddon and Deep Impact), hyper-cooling of the continent due to global warming (The Day After Tomorrow--can someone explain this?), disasters foretold by the Mayan civilization (2012), earthquakes the likes of which only Dwayne "The Rock" Johnson could save us from (San Andreas), sentient monkey insurrection (Planet of the Apes), tornados of sharks (Sharknado), meta-human conflict (see Marvel or DC Comics), the zombie apocalypse (too numerous to mention), pandemics (Outbreak and a bunch of others), or planetary destruction as a demonstration to Princess Leia of the destructive power of the Empire's battle station (actually, if you're reading this from Alderaan, then I have bad news for you).
"Can we borrow your Vitamixer? Also, BRAAAAAAAAINS!!!"
We also aren't ready for widespread disasters that maybe have a higher likelihood of happening (really bad storms and boring--not Michael Bay worthy--stuff like that). The government actually has a pretty good site on preparing for disasters at https://www.ready.gov. They include tips for preparing for a disaster if you have a disability. They also have some recommendations on items you should stow away in an emergency kit. I thought this was a good jumping-off point for a more tubie-specific emergency kit. I'll go ahead and share it here. Feel free to let me know if you have any suggestions.
Water - one gallon of water per person per day for at least seven days, for drinking and sanitation (actually, I should probably double that for me because I use a lot of water)
Food - at least a seven-day supply of non-perishable food (MREs for Betsy and Grace, 4 boxes of RFBs for Brian)
Dog food and extra water for the dog (the birds are screwed; they annoy me anyway)
Cash or traveler's checks
Important family documents such as copies of insurance policies, identification and bank account records saved electronically or in a waterproof, portable container
Sleeping bag or warm blanket for each person
Complete change of clothing appropriate for your climate and sturdy shoes
Household chlorine bleach and medicine dropper to disinfect water (I also have some iodine tablets)
Fire extinguisher
Matches in a waterproof container
Feminine supplies and personal hygiene items
Mess kits, paper cups, plates, paper towels and plastic utensils
Blender bottles/plastic measuring cups
Paper and pencil
Books, games, puzzles or other activities for Grace
Do I have all this stuff? No. We have some of it, but not in one place. But now I have a list! Maybe some of you tubies out there have recommendations for improvement and if you ever manage to gather all those supplies, let me know your address, so I know where to go when I need to shamelessly mooch off you.
Anyway, I hope this is helpful for some of you. Please let me know if you have links to other helpful disaster prep sites, and consider donating to Harvey relief (even if you're reading this months after the hurricane hit)!
Facebook is a good place to go if you want to see all the best highlights in your friends' lives. But, if you look through their profiles and believe each happy photo and amusing post isn't surrounded by several hours of boredom, misery, arguments, awkwardness, embarrassment, and desperation then you'll make yourself severely depressed believing you're the biggest loser you know.
At least that's what I tell myself.
If you're one of my Facebook friends and your life really is that awesome, then I hate you. Please post a picture of your perfect angel child vomiting on your face (I know you have one!!) so I can feel better about myself.
Even on this blog, the happy pictures and funny captions have a backstory.
We were freezing cold. Grace locked herself in our hotel bathroom.
I paid $50 for a stupid wand and I feel like an idiot.
The trip where I got a bad sunburn that ultimately led to me losing my arm.
I don't drink very often. When I do, I tend to get colds, which may turn into pneumonia.
The truth is, nobody wants to know about all the really bad stuff that happens. Just like when I say, "What's up" to some random dude at the gym, I don't really want to know about his messy divorce or the details of his latest gall bladder surgery. If I filled Facebook, or my blogs, with constant gripes about my physical ailments, then people would rapidly tune me out. This is why I try to sprinkle the bad stuff with my poor attempts at humor to make the feeding tube explosions, constant drooling, and amputations a little more palatable for the casual reader.
Our most recent trip to southwest Washington to visit my dad is no exception. For every exciting, cool picture that makes us look like a jet setting, happy-go-lucky family, there is a morass of anger and frustration simmering below the surface.
I was constantly worried about the sun on my neck
Traffic. Was. A. Nightmare.
Don't get me wrong. We had a great time in Washington and Oregon. Weather was perfect; a nice change from hot and muggy Tennessee. It was awesome seeing my sister and nephews, and letting Grace and her cousins play on the farm.
Dolly the horse is looking for my other arm
Training some future child laborers
They continued looking at the camera as they drove straight into a creek
Goonie Rocks!!!!!!!
My widowed grandmother is living with my dad now. Looking great!!
Kadin insisted on feeding me every time
We have to show the bad stuff to somebody though. I was reminded of this before dinner one night at my dad's house. I was leaned over the kitchen sink hacking up gunk that was lodged in the back of my throat.
This is a nightly ritual for me. I do it in our kitchen or in the bathroom. Usually, the amount of crud reaches a critical mass shortly before or after dinner and I start to gag on it. There's no time to make it to the bathroom to do it privately, so I end up hunched over the kitchen sink coughing it up. This is what Betsy and Grace are subjected to every evening. Sometimes, I'm forced to do it in the bathroom out at restaurants, but I try to avoid that. Nobody wants to see that stuff.
So, I finish nearly puking up a lung in my dad's kitchen. My dad quietly says "Do you do that every night?"
"Yes," I answer, "every night."
Later on, Betsy asked if I could just do it in the bathroom next time. I said no way, because I think my family and close friends should have to see the bad stuff. I'm not a big complainer, so most people have no idea about all the little, everyday struggles with my health. If you're only subjected to my Facebook profile, then you may think I'm living the dream, and every hardship is just laughed off with a corny joke. The truth is, I am living the dream. I have a great life, BUT there's a lot of shit that goes with it. There's no need for me to discuss every excruciating detail publicly. We all have our private battles with mental health, physical health, poverty, work, family, you name it. No need to talk about it with everyone we know (TMI).
However, at the same time, we have to vent to someone. I need the support of my family and close friends and to get that support, they have to understand the full extent of my health problems. I think this applies to everyone. With Facebook/Twitter/Instagram/etc., sometimes it's just difficult for us to get used to separating the public social media profile from our private lives.
But anyway, we had a wonderful trip to Washington!
I can count that kid's ribs!
Brave explorers journeying around the farm
Searching for crawdads with grandpa
Didn't really catch enough to make a meal
That stump is actually a slug. That's how big they get.
Brought enough Real Food Blends for lunch every day!
Bottomline, if I ever hack up a bunch of nasty looking stuff in front of you, then you should feel honored that I consider you a close enough friend to puke in your presence. That's how I show my love.
If you really loved me, you'd clean it up too. You're welcome.
