What People Who Use Feeding Tubes Wish Others Understood
People who use feeding tubes share what they wish others understood.
Let’s face the facts: Chronic illness robs you of a lot of energy, and it can feel like you’re always playing catch-up. There never seems to be enough moments when you feel well, and the time and energy you do have is spent on all things people tell you to have do to be a good human being. Enough already! I hear you shouting, “Stop the world, I want to get off!” So you have permission to take a moment today to read some good news because I have some for you. Here’s a secret I want to let you in on:
The majority of the people in this world live their lives on auto-pilot. They stay in their comfort zone and rarely move beyond it. Why? Because it’s easier, it’s comfy and it’s safe. They’re not taking an active role in their lives.
The truth is that most people on this planet are as lost, if not more lost, than you! The difference between them and you is your situation has made you acutely aware of the precious nature of every day and every moment. And that gives you something they don’t have. Your obstacles have put you in a better position than most to fully appreciate this life you’ve been gifted.
When we’re dealt a difficult hand in life, it’s easy to compare our lives with people who have their full health. But life isn’t what we’re given, life is what we make of it. Life is the sum total of our actions and our ability to learn and apply what we learn (or not) for better or worse.
We usually think people who have been dealt the perfect hand have it made. But take it from a half-decent poker player, you can have the best hand at the table, but if you don’t know how to play the game or don’t realize you have a good hand, then you’re not going to play that hand to its full potential.
Watch professional poker players. They know how to use the cards that land. They get to know their situation, they read people, they work out the pro’s and con’s and probabilities, they take chances, they trust their gut and they hone their skills and practice until it becomes second nature.
So what can poker pros teach us about living with the cards we’re dealt that don’t seem so great at times:
1. See more than just your hand.
You don’t get to choose the cards, but you do get to choose what you do with that hand. You can take one look at what you’re dealt and fold, or you can pause for a moment to take in your surroundings, the people around you and assess how strong a position you’re in. Maybe test the waters with a call and see how it plays out or if your luck turns.
In life, you’re more than just the illness you’ve been dealt with. Just like there’s more than just the cards in play at the table, there are people, opportunities, chances and maybe just a little luck. But you’ll never know if you’re never in the game. Play with life a little and take a chance that there might be more for you than just the options you see in front of you right now.
2. Play the long game.
A good player knows when to fold and knows that it’s not about winning every hand. If you’re smart enough to get to heads up — the final two players — the odds are suddenly much more favorable than when there was a table full of opponents. In other words, you don’t have to do everything and you don’t have to do it all at once. Play to win by playing it smart and by choosing your battles one hand at a time. Pick the best hands and fold the opportunities that don’t light you up or make you feel good
3. All you need is a chip and a chair.
You have been given a chip and a chair in this life. It’s seat at the table and a chance to play. And you’ve been given another great advantage: Your life so far has taught you to be smart, observant, patient, and when that hand comes, you’ll know how to play it better than anyone else.
You may feel like the underdog sometimes, but every dog has its day and, my warrior friend, you are still very much in the game.
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Lead photo by Thinkstock Images
I sit on the cold bathroom floor writing this. I am left with only my computer as I throw up repeatedly while listening to “Flares” by The Script. Tonight, right now, it is all real. My pain is real, my illness is real, the loneliness consumes me. I sit here without real means of communication, becoming lost in my thoughts and the music until I finally throw up again, further clearing my body of nutrition and pain medication. I wonder to myself if this is the celiac disease, too much sun, POTS, or something Ehlers-Danlos-syndrome-related. Whatever it is, it is not pretty. My tears are staining my dress as I lie here sobbing, and the only thing I know how to do is write (and throw up).
The truth is that in this moment I feel hopeless. This is as close to rock bottom as I tend to get these days, but trust me it is scary. In this moment the pain, the nausea, and the fatigue are all-consuming. I think I will never achieve the goals I set for myself years ago, I will never get better, I will never live a normal life. On these nights it hits me. It hits me that my situation will never change, and I will never get better. On these nights I become hopeless and alone.
At a certain point during my pity party, though, my attitude changes. I realize that I cannot control what is. I cannot stop my conditions from making me miserable. What I can change is what could be; I can change my future. I find realistic goals for my future, I find a good support system, and I keep pushing on as an advocate for my conditions. On these nights I realize that there is so much beauty in the world. I see it on the nights when I drive down the basically empty highway. I see it when my plane touched down in Mexico. I see it when my little brother hugs me and tells me he loves me. There may not be beauty in my current situation, but there will always be beauty around me, and I have learned to accept that.
I cannot change what illness is standing right in front of me, but I can take in the beauty surrounding me despite my situation. These moments are what get me through my bad nights.
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I know you don’t want to read a guide about dealing with doctors and the million-and-one appointments you have to schedule, but alas, sometimes you just need a little advice. Know that you are not alone. We all hate dealing with doctor’s appointments, scheduling them, remembering them, and then of course, we all dread going. To keep it simple, here are some of the tips I use:
1. Organization Is Your Friend
I add all of my doctors’ information to my contact list, including name, specialty, address, phone number, and email address. I also add all of my appointments to my calendar app on my phone. When I do this, I usually include the name of the doctor, address, phone number, date, time, and email address, and I always set a reminder; sometimes, if I have a ton of appointments, I send additional email reminders to myself. This helps me keep my appointments in order; plus, I can easily reach my doctor at any point, because their information is stored on my phone and in the appointment slot.
2. All at Once
If I can, I try to schedule all of my appointment in one day. I hate how much time I have to spend in some of these appointments, so I try my hardest to get everything done quickly and efficiently.
3. Specialist First
When making appointments to see any specialist, I make sure I always take the first appointment available. This means that if they open at 6 a.m, I make sure to schedule my appointment at 6 a.m. In my opinion, it’s the best slot in the book. As long as my doctor arrives on time, I don’t have to wait; plus, I usually get a few extra minutes with my specialist to ask my laundry list of questions.
4. Therapy Last
I live by this rule. I always book the last appointment of the day to be my massage therapist or acupuncturist. I do this because once I am done with my therapy, I get to go home and reap the benefits by lying in my bed and relaxing. Trust me. It’s pretty amazing.
5. Go Digital
Prior to moving to Nigeria, I had Kaiser Permanente insurance and it was amazing because they have this online portal where I could email my doctor, request a call back, refill my meds and have them delivered to my home; basically, it was a dream come true. I highly recommend selecting a doctor that lets you email them. It is so efficient and easy to just send a quick message to your doctor with any question you might have. Also, if you can get your pharmacy to deliver medications to your home or work address, it will save you time and it will be one less reminder you have to add to your phone.
5. Nurse Practitioners or Physician Assistants Can Be Solid Options
When my issues are not urgent, I book appointments with the NP or the PA. It usually ensures that I get to speak to someone that same week and I don’t have to wait for an eternity for my doctor to have time to see me.
6. Photograph Everything
I take pictures of my medication bottles, referrals, and prescriptions. This helps me keep track of everything and I can always pull it up when I need to show one of my doctors. Simplicity at its finest!
OK, those are my tips. Do you have any additional tips you would recommend? Comment below and let me know. I am always looking for shortcuts to dealing with doctors.
Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.
This post was originally published on The Curvy Spine.
This past Sunday I attended my first ostomy support group with the Metro Maryland Ostomy Association. The bar was set low going into it. In the past I have gone to other support groups and have been tremendously disappointed. I didn’t feel like they were run by volunteers who were suited to lead such a group and the time was spent letting everyone go around the circle and tell their sob story. I know this can be helpful to some people, but it is not what I needed. I found that there was nothing productive or informative about the sessions. But this past Sunday’s meeting was pleasantly surprising, and here is why:
1. I was the youngest person in the room by 30 to 40 years.
I was given a heads up by my ostomy nurse before going that many young ostomates are turned off and never return, because when they get there they realize they have walked into a room of their grandparents’ peers. I went into it knowing this would be the case and was happy to be greeted by very friendly people. I stood out like a sore thumb but people came up to me and introduced themselves. Many of the people there have had ostomies for much longer than me. I find this a plus and will continue to look to them for guidance and inspiration. I do have hope that if I continue to go I will catch new young ostomates and will convince them to keep coming back. My long-term goal would be to recruit enough young people to start our own group.
2. The session was professional and organized.
Beyond standing up and quickly introducing myself to the well-attended group of about 30 people, there was no sob fest. The meeting was kicked off by one of the board members (they have a board!) and they introduced the speaker for the day. This week they had a representative from a company that manufactures ostomy products in Germany. These products are brand new to the American market. We got to learn about their products, ask questions and sign up for free samples. My impression is that for every session they either have a professional speaker or they break out into small groups based on the type of ostomy you have, and you can talk with an ostomy nurse and ask each other questions.
3. They have a WOCN (Wound, Ostomy and Continence Nurse) there at your disposal.
I have only been able to see my ostomy nurse when I have follow-up appointments with my surgeon. These appointments are about to end (I only have one more…knock on wood) and I’m not sure I’ll be schlepping out to Baltimore to see her again. While she is very responsive to my questions over email and phone, I get more from face-to-face interactions. At every meeting this group has a certified ostomy nurse. I got in line to talk to her at the end of the speech and was able to ask her my questions. She is a retired nurse and has many years of experience. I found her to be very knowledgeable, approachable and helpful. Too bad she doesn’t do private consults in DC.
4. They have a sample table in the back filled with supplies.
I think my free sample radar noticed this table before anything else when I walked into the room. It was in the back and covered in all the various ostomy supplies you might need. Turns out it’s there for the taking! When I spoke to the nurse and asked her my questions she pointed out specific products on the table I should take home and try. Before I left I went to get a close-up examination of what was there. I took a couple adhesive remover wipes and skin prep wipes out of the boxes and put them in my purse along with an entire bottle of stomahesive powder. This elderly man came up to me and asked why I took so few. I told him I wanted to make sure other people got to take some home. He looked me straight in the eye and with a very serious tone said, “If you see something you like, take it!” He then proceeded to take the two boxes that were basically full and shove them into my hands. I walked out of there with about $90 worth of supplies my insurance doesn’t cover but I actually need. Thank you sir for looking out for me!
5. I was in a room with other ostomates.
I found it refreshing to walk into the room and know everyone had an ostomy like me. Being in their presence made everything feel normal for two hours.
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Image via Thinkstock.
“You’ll feel better after seeing Dolly Parton. I promise.” These words from a friend were the deciding factor in spending some birthday money on an inexpensive ticket to one of Dolly Parton’s recent concerts. As I rode the escalator to the upper section of the theater, with my germ mask on and anxiety flickering through my brain from the overwhelming noise and motion of the crowd, I had my doubts about that.
I’ve never been a country music fan at all, but Dolly is Dolly. Like many people, I grew up hearing her music and I watched some of her films as a kid in the ’80s. As an adult, I’ve really admired her Imagination Library reading program for children, as well as her assertiveness and creativity. This article isn’t a concert review, but in case you’re wondering: her voice was beautiful and clear as a bell, she played multiple instruments and spun wonderful stories about her life and family and by the end of the show I had a huge smile on my face.
And in the middle of the concert she did something that stunned me: she sat down.
True to form, she didn’t have any old chair; she had a charming little porch set that magically appeared onstage. I was too far away to see if it was bedazzled, but I wouldn’t have been surprised. She sat on that porch and captivated the audience as she sang some of her most beloved numbers, including “Coat of Many Colors.”
Dolly sat down a few more times during the concert. Each new seating area was stylish and integrated seamlessly into the set. She was slightly under the weather, and told the audience she was sorry she had to use a tissue onstage. However, she never apologized for sitting down, and that was important. When she wanted to sit, she damn well did so, in all her rhinestoned glory, and held court from that porch or church pew.
As silly as it might seem, this was a huge thing for me. I have a very different life than Dolly Parton, but I’m in a world that wants me to stand…and doesn’t always understand when I can’t.
I’ve been dealing with this issue since I was in my early 20s. At first it was intermittent and due to orthopedic problems and injuries. However, I always eventually recovered, more or less. I worked at jobs where I had to do a fair amount of standing and spend a lot of time going up and down long flights of stairs. At some point, though, as my various genetic and autoimmune conditions began to truly take hold and my joints wore down more, I stopped bouncing back. I had to stop going to standing-room only events and noticed I was looking for seats more often.
It eventually interfered with work. A few years before I fell seriously ill, we had a meeting for professional development at my workplace. Unfortunately, we were standing for the entire discussion. After a little while I began to really hurt, so I took a seat on a nearby bench, where I was still close enough to hear what was being said. I’d only been down for a few minutes when one of my managers quietly ordered me to stand up again. Not wanting to argue in the middle of the lecture, in front of my colleagues, I complied. By the end of the half-hour presentation my hips and knees had locked and I was in absolute agony. The next day I spoke to HR, and was finally granted permission to sit down when I needed to do so.
Nowadays I begin to hurt after a few minutes of standing, and I really can’t do more than 10 or 15 minutes without severe pain. On a bad day, it’s much less than that. I have to keep shifting my weight from one foot to the other to try to minimize the pain, too. When I sit down, I constantly fidget and sometimes need to stand up again for a second to keep my hips and knees from locking, like a human Jack-in-the-Box. I still try to exercise and dance every now and again – for some reason, motion doesn’t hurt exactly the same way standing does – but it’s far less often and less intense than before, due to the pain and exhaustion left in its wake. My previous life, in which I walked a 5K six days a week, did flying trapeze and could dance for hours, is long gone.
Not everyone understands this, because society is all about standing right now. In an article for NPR, writer Angus Chen noted one of the recent catchphrases: “sitting is the new smoking.” Standing desks are promoted as a way to keep fit in the office, and there have been many media articles about how sitting will supposedly kill us. Nobody wants to be known as a couch potato. We’re supposed to be up and on our feet, and if we don’t “look sick” or as though we need that seat, we’re sometimes shamed if we sit down.
I know I’ve irritated some of my friends when I’ve tried to explain I can no longer do standing room-only events. People have raised their eyebrows when, in lieu of another place to sit, I’ve plunked myself down on the floor or leaned against walls. I’ve heard anecdote after anecdote about other people with disabilities or chronic illnesses who have been on the receiving end of nasty remarks or comments when they’ve needed to sit down or use a wheelchair or scooter.
Several years ago, before I became ill, a relative who also has some chronic health issues came to visit me. She knew she would not be able to walk around and stand in lines at my favorite theme park, so we rented an ECV (electric convenience vehicle, or scooter) for her. She was worried about people’s reactions to it. And I wanted to tell her that her worry was misplaced, except for the fact that I’d overheard snide remarks about ECV users from other guests at that very theme park. Luckily, most of the people with whom we interacted were lovely. Still, the fact that she would even need to worry about people’s reactions to using an ECV – and that it was almost enough to deter her from going to the theme park at all – really bothered me.
It shouldn’t be so hard. If you need to sit, for whatever reason, you should be able to do so without worrying. Nobody should be subjected to irritation, insults, anger or derision for taking care of themselves and doing what they need to do.
The next time anyone gives me drama about sitting down or bowing out of a standing room-only event, I’m just going to remember Dolly. What would Dolly do? She’d probably smile graciously, keep singing her heart out in all her rhinestoned finery and completely ignore those criticisms. You do what you need to do to look after yourself. That’s something I constantly tell myself, and Dolly helped remind me of it.
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