What IS that thing taped to your face? (NJ tube FAQ&A)

I haven’t had a “good” day in months.  What in the hell actually constitutes a good day?  Now I’m thinking, this is probably my new normal which means if I’m not dying, it’s a good day.  Therefore, 90% of days are good days.  A good day and not feeling like I’ve been steamrolled, frozen in carbonite and set on fire all at the same time aren’t synonymous.  I’m always in some form of what feels like a torture chamber, mostly because I’m a wimp with a low tolerance for my body’s BS.

It takes all of the mental and physical fortitudes I have to get out there and do something “for fun”.  It stinks but that’s how it goes.  Last weekend, as much as I wanted to stay curled up in bed, I felt compelled to keep MC company during his travels because it was our anniversary.

First, we went to Barnes and Noble to see if they had any of the books on my reading list in stock (only one was, B&N fail).  I normally buy used books so getting a fresh new one to huff was a special treat.  I ended up with The Immortal Life of Henrietta Lacks.  I’ve only had it for a few days and I’m already finished.  Not too shabby for someone with poorly behaved eyeballs!  I had a difficult time putting it down – a good sign that it’s an awesome read, albeit a very emotional one.  It’s part science, part human interest/cultural study and a complete work of art. (Don’t even try to watch the movie – it blows.)

Next up, Target has a wonderful candy aisle and happened to be two stores down, therefore a trip to Target was the logical decision.  They’ve got anything you want covered in chocolate (a belated 4/20 homage to Johnna?), to include potato chips.

A woman standing in front of us at checkout was staring at me.  I avoided eye contact but I could feel her gaze burning a hole in my face.  I eventually locked eyes with her and she immediately asked me why I have a tube hanging off of my face.  I was caught off guard and joked that you never know when you’ll want to go scuba diving.

It’s kind of funny, the difference between being an ‘invisible’ versus having outward, visible signs of illness.  When I broke my ankle (thanks to the brilliant drop foot), outings often turned into a Q&A session with complete strangers.

“What happened?  Does it itch?  Does it hurt?  How long do you have to wear a cast?”

I much prefer being invisible, as conversing with strangers sort of freaks me out.  It was difficult to be inconspicuous in a wheelchair while wearing a bright purple cast.  It’s also difficult to be inconspicuous when you’re in a wheelchair and you’ve got a tube hanging out of your nostril.

An oxygen cannula is universally recognized and I’ve never been asked why I’m on supplemental oxygen when I’m using it.  On the other hand, I’ve gotten quite a few questions about my NJ tube and as annoying as it is, I figure I may as well attempt to educate people.  It might save someone else from having to answer the same questions.  In an ideal world, I’d have no problem doing this.  The reality is that a stranger approaching me and instigating a conversation is way outside of my comfort zone.  “Huh?  What?  Me?” 😮

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The Blue Streak – vroom vroom, mofo

Here are a few questions I’ve been asked (some by strangers, some by people I know) and how I wished I would have answered them instead of having my tongue tie itself into knots.  Perhaps I can memorize all of this for future use, providing my brain becomes less slippery when I’m in the spotlight.

Q: “Why do you have a tube hanging out of your nose?”

A: For nutrition – I can’t maintain decent nutritional status thanks to having a gastric motility disorder called gastroparesis (partially paralyzed stomach) and inflammatory bowel disease.  Doesn’t that sound absolutely delightful?

Q: “Are you allowed to eat normal food even though you have an NJ tube?”

A: Yes, I can eat.  I can also walk down the street naked, but should I do that?  Probably not.

The more complicated answer is that I can eat as tolerated but I have to be very careful because eating often leads to intense nausea, which leads to retching and harfing.  Both of those can effectively pull the tube out of my small intestine and cause it to coil up in my stomach where it won’t do me any good.

Q: “So, if eating makes you nauseous, can’t you just take drugs for that or somethin’?”

A: Well, sure I can, yet it does nothing to help my stomach empty so I may not be as nauseated but after several hours of food fermenting in my stomach I find myself with an extremely painful knot that makes vomiting seem like a stroll in the park.  Eventually, what goes down must go somewhere, so after several hours of pain and nausea, the result is exactly the same.  Blaaaaarrrgh.

When I do eat, it’s just a sample to keep my taste buds happy.  A piece of chocolate (or a chocolate covered tater chip), a pickle, a spoon full of honey, hard candy, etc.  I also drink room temperature or warm beverages small amounts at a time.  My primary source of nutrition and hydration is obtained through my tube with formula.  I’m grateful that it completely bypasses my taste buds, because there’s no way it doesn’t taste like shit.

Q: “Doesn’t that (having a feeding tube) bother you?”

A: Fuck yeah, it does.  It’s not comfortable.  Too much talking makes my throat extremely sore and if it randomly rolls in the back of my throat, it can lead to gagging, which isn’t at all attractive.  It also makes my nose run constantly.  Ya know, since there’s a foreign object shoved up there 24/7.  As much as it sucks, it’s a necessary evil.

Q: “Will you have to have it forever?”

A:  I hope not but I don’t know.  Nasal feeding tubes are a temporary solution because they can cause scar tissue build up in the sinuses and back of the throat.  It also has a tendency to clog if I’m not overzealous with the warm water flushes. People who need some sort of permanent feeding solution, assuming their stomach doesn’t magically start working again, usually end up with a tube that is surgically placed in the abdomen to feed directly into the small bowel.

dweeeeeeeeeb

Being able to eat is a gift that most people don’t see as such.  It’s automatic.  We need to eat to survive.  Food isn’t just nourishment for our bodies.  It nourishes our souls (if you have one), minds (if you have one), and even our relationships/friendships when a special someone brings you a treat for the heck of it.  Never underestimate the power of food.  I sure do miss it.

20 thoughts on “What IS that thing taped to your face? (NJ tube FAQ&A)

  1. You should live in England. Over here we are experts at ignoring each other so you wouldn’t be asked awkward questions. Even when we are rammed in a packed tube train we do our best to study our own feet like we’ve never seen them before.

    Liked by 2 people

  2. Can’t believe people actually ask you that stuff … mind due, I had someone ask me randomly the other day … “are you a Maori”, with a bit of a snide twist to it … my reply: “Yep, just a couple spoonfuls” … that shut her pie hole down 😉

    And feeding tube and all, you’ll looking pretty gorgeous ! xo

    Liked by 1 person

    • Sheesh, I wonder what she was thinking when she asked you that?

      See, most of the time it happens when I’m waiting for an MD appointment. In that case, at least it’s in a more appropriate setting. But at a store when I’m pretending to be a normal human? Weird. I’m not against it because I think curiosity is better than fear. Unfortunately I’ve got a raging case of social anxiety so I go into derp mode when someone new tries to talk to me. Oh well.

      Gorgeous? You are too good to me, ME. 😉

      Liked by 1 person

      • She was thinking I wouldn’t mind her being a twat … and curiosity is fine, just borderlines on rude. I mean if we asked why they were wearing last seasons fashion; or paired that bag with that dress; we’d be considered rude. But No its Ok to ask someone whose obviously unwell, to explain to them, the paraphernalia hanging from their snout. Not Cool.
        I remember one man asking ‘why was I wearing sunglasses inside’; I replied: PTSD, google it mate.
        That was a nice reply 😉

        Liked by 1 person

  3. When I was in college (40+ years ago), my summer “job” was to have various kinds and thicknesses of NG tubes placed in me as part of research into making their design more tolerable and efficient. Back then the “normal” ones were heavy black rubber. It was so difficult and uncomfortable to ram the leading end in the nose and through. Sometimes it would get diverted to the trachea going in. Not pleasant.

    I wore the tubes continually for about five months. Every few days they would add a different kind of collecting segment to the head end, lube it up and push it through. I know all about that scar tissue problem. I chugged two big cups of saltwater early each morning, and the lab techs would see how much they could pump back out.

    When I went about town I got all the same questions and stares you are getting now, despite being only a “guinea pig”. Mothers would yank their kids away to keep them from approaching me. So much for the notion that people’s attitudes evolve. Reading this and seeing your photo took me back to those days in the space of a breath intake.

    I’m so damn glad you’re surviving. You look much prettier with your tube than I did.

    Liked by 1 person

  4. People are weird, and I can sympathize having been with a walker at 34, on a cane , O2 cannulas around my nose (you’re right, most people “get” that), etc. But I, for one, am happy to see you have it because it means you’re getting some nutrition!
    And I absolutely get nausea. I’m back on my nausea meds because I’m back to coughing, a lot, and green…..something. Fucking lungs. I’m over it.

    Back to my original point, I’m glad for the NJ tube (and an info card isn’t a bad idea!)

    Liked by 1 person

  5. I like the info card idea. It’d solve the social anxiety issue, maybe.
    People don’t think how it will affect others when they ask such questions. You were made to feel uncomfortable. That’s not acceptable.
    I’ve had people ask me why I have a walker, which I don’t always use.
    And I have them ask about my cochlear implants often. It’s better than the weird looks. I’m no ally patient and answer as best as I can. But sometimed I just say that they help me hear. And think… go away.
    I’m deaf without them. I don’t hear great with them. I’m not the CI poster child. So I don’t want to answer all the questions.
    Like. What does it sound like?
    What does it sound like to hear normal? It’s hard to explain.
    Thank you for explaining much about your feeding tube. I know much ore now. I’m glad you are getting nutrition, but sucks you have to have it.

    Liked by 1 person

  6. I have had people asking me what was wrong when I was on oxygen. Most were well meaning, some not so much. I even had a few people ask me why I was hauling tanks when their relative had a little machine. I had to tell them because I used too much. Most of the time, it was in odd or random places so it would catch me off guard. A few people approached me and were almost embarrassed but made it known (when I could carry around small machines or tanks) how I rigged it up (backpacks, cases) or where they could get a device like mine because they had a relative who was using oxygen. Those of course, I didn’t mind but of course their approach was entirely different. One lady rudely interjected when she saw me changing tanks (I had just run out) and barked at me to “Please move”. You can bet I put on my resting bitch face and took my sweet time with her because boy was I pissed. (I wasn’t taking up that much room and she parked too closely in the space.) I also didn’t give her hell for parking in a spot reserved for families with children when I didn’t see any children with her… Now I still get looks post transplant because I wear a mask sometimes but it’s usually complementary, or even other young people give me a knowing look & nod & tell me how long they’ve been post transplant. But it’s also nice sometimes because a lot of people don’t mess with me if they are freaked out by it and chances are it’s fine because they probably don’t have much nice to say 🙂 That said, I had to have gastroparesis testing, & I’m lucky it was just slow transit but I do have friends with it and or feeding tubes as well (temporary or perm – know both instances) so I can imagine how rough it gets for you. But I admire you for being open about it because maybe it will help someone else in a similar position feel better in regards to the feelings they have surrounding it. I have been following your blog for awhile and while I don’t always comment, I always appreciate your thoughts & the time you put into it.

    Liked by 1 person

  7. I like what I see of your carpet. Have you ever heard of John Diamond? He was Nigella Lawson’s first husband. He really invented the health confessional in journalism here- he wrote about his having Cancer. He had throat Cancer and eventually had to have a tube put in his stomach for food. I remember him writing about how at functions he’d whip his little tube out, get a syringe, load it up with champagne, and inject. He said he missed the feel of champagne in his mouth, almost as much as he missed kissing his children (he couldn’t because of the radiation etc. treatment to his throat and mouth). His bright side was he could now get drunk faster and on cheaper booze. https://en.wikipedia.org/wiki/John_Diamond_(journalist)

    Liked by 1 person

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