Chronic Illnesses: Who Knows?

In the past few months I’ve seen increased frequency and severity in my symptoms and even new symptoms coming to light. When I have flare ups or new issues I often become more aware of my current physical state, and ironically, while doing so, I usually think I’m better off until these harsh realizations, moments of brutality that shine a light on the fact that no, I’m not better, I’m actually worse, but I’ve just gotten used to being sick, used to this flare up that just never left, that became my new “normal.”

Though I’m used to high levels of pain, severe nausea, frequent migraines, fatigue, etc. when I wake up and have new symptoms or symptoms I’ve had before all of a sudden “amplified,” it can be super frustrating, discouraging – not to mention painful. But when these “flare ups” come about and decide to stick around for more than a day or two, the mind starts to wonder….

Is this a flare? Are these symptoms going to go back to “normal?” Is there something more serious going on?

Pain is a hard thing to talk about and understand because everyone has a different relationship with pain, everyone’s “scale” is their own – my 6 could be your 9 for example – and you can’t really know what anyone else’s is unless you’re living it. My pain has been a totally new phenomenon the last couple weeks, my body is searing, my head is killing me, it’s just relentless. This pain is different from my “normal” pain, though, so it’s kind of hard to compare them severity wise, it’s hard to simplify it to a word like “throbbing, stabbing, burning, etc.” or a number 1-10 – I’m in severe pain and discomfort all over my body and it won’t give me a break — I wish that were enough to figure out a way to help, right?

“What concerns me the most is the unknown….it is just too overwhelming to think about…”

When my symptoms cause me to be even more “disabled” than normal, when I can’t get up or out of the house for a week or more, I’m hardly able to be around others because of the pain and stimulation, and I’m sleeping excessively or unable to sleep at all, it can be hard to find motivation, hard to force yourself to get up and get going, doing something as simple as shower or change into fresh pjs…

“No one really explained to me the depth or the magnitude of that diagnosis, no one explained how serious and life changing this chronic illness can be….”

There are so many unknowns with chronic illnesses, and most of us learn all about that through personal experiences, not from doctors or even google doctor! Living with conditions that even doctors don’t know enough about can be scary, all of a sudden everything you know is just swept out from underneath you, you’re left with so little understanding and no control over your own body, your own life. This is all shocking, it’s devastating, and you have got to find a way to embrace it, conquer it, and grow right along side it, otherwise, it will break you through and through, not only physically, but mentally and emotionally, mind, body, and soul.

The Rarest of Guest Bloggers: SMA Syndrome

My name is Danielle and I am 26 years old. Growing up I suffered with ongoing stomach issues and doctors just couldn’t seem to figure out a cause. These symptoms would come and go in waves and there were even periods of time where I would begin thinking I was doing okay! Sadly, those times were short lived and when my senior year of college came about, things took a turn for the worst.

In 2015, I became very ill. It began with my endometriosis creeping back in and that was followed with my gallbladder needing to be removed, and despite those things, I continued to progressively get worse – especially stomach wise. I was having severe abdominal pain when I ate, nausea, vomiting, early satiety (I would take a few bites of food and feel overly full instantly), bloating and weight loss. I was only 105 lbs to begin with so I didn’t have any weight to lose so things became critical rather quickly.

In February of 2016 I was hospitalized because at this point I was not able to keep anything down, not even water. I had dropped to 90 lbs rather quickly and we were very scared. My doctor had run so many tests but could not figure out what was wrong with me, until he happened to be in the right place at the right time. He was at clinic where he overheard a nurse, who isn’t typically at that clinic, talking about another girl who had just been diagnosed with this rare condition. He immediately thought it sounded very similar to me so as soon as he was done at clinic, he came directly to the hospital and went to the radiologist. He told the radiologist to relook at one of my CT scans but from a different angle.

They immediately saw the problem and he came up to my room where he finally looked at me and said “I figured out what is wrong with you. You have SMA Syndrome,” otherwise known as Superior Mesenteric Artery Syndrome.

This condition, SMAS, I’ve never heard of it, I don’t know what is hitting me and how it is going to change things, what my life will look like now, all I know is it is rare, and though it has terrible symptoms, it can be very hard to detect. I had numerous CT scans but until they specifically looked for the compression itself, they were missing it on my scans for the longest time even though it was right there. The compression can be seen on CT scans, angiograms and upper GI studies with barium.

SMAS is an extremely rare and potentially life threatening stomach condition in which the third portion of your small intestine (duodenum) becomes compressed between your abdominal aorta and Superior Mesenteric Artery.

In other words, part of your small intestine becomes crushed and food is not able to pass through, creating a blockage.

This can lead to severe malnutrition, sometimes resulting in death. The mortality rate for SMA Syndrome is so high (1 in 3) because it is so rare and often times there is a delay in diagnosis. As you can see from my story, I was extremely lucky that he found it when he did or otherwise I might not have been here typing this today.

So how is SMAS treated? There is no cure.

There are also 2 types of this condition. One being acute onset, caused by extreme/sudden weight loss often following something like scoliosis surgery. The other being chronic, meaning it develops over the course of their lifetime. Surgery can be done to relieve the compression, or sometimes gaining weight (usually via feeding tubes) can also relieve the compression and allow food to start passing through again. However the damage done before it is found cannot be reversed and often times the symptoms can still remain even after surgery or weight gain, which is why there is technically no cure. In acute cases, the prognosis is better and oftentimes weight gain is enough to correct it and relieve the symptoms.

Chronic cases are a bit different, these cases are where the symptoms can still remain even after medical intervention, they aren’t easily treatable and there is absolutely no cure. That was the case for me. As soon as I was diagnosed I was immediately put on TPN (total parenteral nutrition) to help get me stable enough and I had surgery within 3 weeks. Since then, I have continued to have an avalanche of problems and my symptoms have remained. I continue to have pain with eating, nausea, vomiting, bloating and severe motility issues. The damage done to my body from SMA Syndrome has caused the entire rest of my GI tract to slow down and not function properly, so I have developed other chronic motility issues from it as well (such as Gastroparesis and intestinal dysmotility), which sadly is often the case for many people diagnosed with SMAS.

After numerous attempts to try and get things under control, I had to get a feeding tube placed in my abdomen to help give me the vital nutrition I need to sustain myself. I had a surgical GJ tube placed a year ago. I also am currently on TPN through a central line (port) in my chest due to the severity of my motility issues at the moment and not being able to tolerate my tube feeds right now. So often times feedings tubes are needed even after surgery to help manage the symptoms that remain and to help sustain individuals with SMA Syndrome.

Getting a feeding tube can be very overwhelming. It isn’t easy to process what it is like to have a tube surgically implanted into your body and it is a huge adjustment.

But what made the transition easier for me when I had my surgery was Newbie Tubies. I came across Newbie Tubies on instagram (@newbietubies) and saw that they create packages for people who are getting feeding tubes that are filled with all sorts of awesome things to help someone recover from the procedure and different items for the new tube as well.

The goal is to make the transition easier for someone by sending them a package to brighten their day. You can apply yourself or you can nominate someone to receive a package.

 

When I recieved my package it had things such as a blanket, water bottle, socks, handmade heating pad, tubie pads to decorate and protect the tube, bath bombs and a coloring book. It also included a list of tips for living with a feeding tube for those who are getting their first tube. Also, everything was donut and dog themed to fit my personality, which can be noted on the application to make each package more personalized to the recipient.

I cannot express how much receiving that package meant to me when I returned home from the hospital and how much it lifted my spirits. Newbie Tubies is truly amazing and it is creating an awesome community of fellow “tubies” on social media. It is awesome to be able to connect to others who have feeding tubes as well because you can relate to them and also share tips and tricks with each other to help make living with a feeding tube more manageable.

So if you have a feeding tube, are getting one or know someone with one please go check out Newbie Tubies on instagram. Or even if you just want to help, you can donate money or items to go in the packages sent out. So please check it out!
I share my story and my experiences with SMAS with hope that it will help someone else find their diagnosis and know they aren’t alone in this journey. It can be incredibly hard finding any answers, and I know that if it weren’t for individuals working to spread awareness through social medias and the stories others have shared, I wouldn’t have been diagnosed, I would have continued suffering without answers for much longer.

SMAS is an extremely rare condition, and because of how rare it is it is and due to overlaps with symptoms of many other stomach conditions, it often isn’t thought of. Not a lot of doctors know much about this rare disease, most of the time they have only read about it in textbooks during medical school, but each patient, each case, is unique and complex, not one fitting the case studies or textbooks perfectly.

I had no idea what it was until I was diagnosed, so I hope that reading my story can help someone else out there and just educate more people about this condition. For more information about SMA Syndrome, you can go to https://rarediseases.info.nih.gov/diseases/7712/superior-mesenteric-artery-syndrome.

 

Post by Dani Fantaskey — guest blogger and newbie tubie package recipient


 

Thank you Dani!! Your post is fabulous and I am SO glad your package made such an impact on you – seeing your positive remarks truly inspires me to keep working hard to individualize each package. I love doing it, so I’m glad it doesn’t go unnoticed 🙂 So happy to have you, keep in touch and I’d love to have you back involved with the project anytime! Lots of love!

If anyone has questions or comments for her, comment below or contact me and I will get you in touch with her 🙂

xoxo

Rachel

Thoughts 6 Years In

I often feel that when I put myself out there and say, “Screw you, Ehlers Danlos Syndrome (EDS), screw you gastroparesis, I WANT to do this, I’m going to do this,” and I actually DO,  my body comes back at me saying, “uh, hey now, who gave you permission to do that?”

When I do this, I try to compare pros and cons, are these things I want to do worth the payback that will come my way? There are so many things I want to do, and I’m an adult so I can do whatever I want, right? No grounding or taking my phone away, but if I misbehave, my body can punish me in a much harsher manner than my parents ever would.

Yes, chronic illnesses are brutal. Yes I am exhausted and utterly uncomfortable, but now, after years and years of searching for answers or simply searching for relief, I have to learn to care for body and mind, not pushing myself to a point of danger or past a “safe” space health wise, but I also have to embrace what I DO have and what I am capable of. I have to hold onto every bit of the true ME without forgetting where I am in my life right now.

I recently had a bit of medical excitement (a bit of a scare) when a new symptom popped up from out of the blue, but I woke up and honestly thought very little of it aside from knowing I need to be mindful today, just watch for symptoms I don’t usually experience or other warning signs!

So why am I becoming numb to symptoms or complications? Because I’ve seen it happen, because I have hope, but not expectations? I know that many don’t understand that, we all have different ways of coping or different perspectives on the meaning or the terminology — “hope” is relative, similar to grief, we all go through this process with different coping mechanisms. I know that EDS can lead to all sort of complications, it sometimes feels like there’s no end to the diagnoses, every year brings another symptom, another doctor, another diagnosis. I’ve watched it happen to girls just like me; heck, I’ve watched my own health continue to “D&D: DETERIORATE & DIVERSIFY,” so I guess you could say I’m not impacted or fearful in the same way that many healthy people would be when something like this occurs.

Does this lack of reaction represent a lack of hope? Have I built up an immunity to “human” emotions? Do I live life expecting the worst? Fearing or expecting to die? No, I don’t. Though I am forced to consider more seriously some of the not so fun parts of life more than most individuals my age, I don’t plan on leaving y’all anytime soon

So, then, is it a coping method? I suppose, probably, it is. While I prepare for all possibilities, there’s a wall there to protect myself and those around me. There’s no way for someone to focus on something of this magnitude 24/7 without going downhill quickly, so it’s important to me not to let that happen. I don’t want to torture myself mentally by focusing on my physical state all day, every day, but more so, I don’t want my family to have to go through that day after day. They have sacrificed and suffered enough throughout my journey- through thick or thin they are always by my side, but if I can spare them any grief or burden, I will do that. No one should suffer from chronic illnesses like these, but if I have to, I at least want to do what I can to protect others from extra suffering.

Chronic illnesses are nasty and powerful, but they don’t always win. I’m not out of power yet, I have a lot of hope left in me, and even more so than that, I have a will to live. I have a heart that craves more love, a soul searching for MORE adventure and experience, and eyes that WILL get to see the world.

My body may protest, but my will to live and my love for life, my love for simplest of things and the most wonderful people (& dogs) will power me through anything. I believe in the power of love, love is stronger than any fears I come across in my journey, and I am not lacking in love.

(I am single, though, just FYI 😉 )

I have a complex, difficult life, but it is filled with so much good that makes all of the challenges and trials, all of the terrible symptoms and times of questioning or doubt seem so small and unimportant. I am surrounded by love and unwavering support not just from my (biological) family, but also from the incredible community that has continuously come together and shown what true family is. My family expands all the time, it crosses oceans and countries, there are no limitations, just love, support, and acceptance. I’m continually amazed by the incredible, valiant efforts that I never could have asked for or dreamed of and I am reminded often of the true values of life, of friendship, of open mindedness and a judgment-free perspective, etc. I am blessed, I am thankful.

I am sick and I have hardships every day, but I have hope, and I have dreams, goals, and motivation – so watch out world, I’m on a mission and it’s not to the doctors office – and probably not to stand up comedy either.

xoxo

Newbie Tubies Round 2

I’m so excited to start year 2 of Newbie Tubie Care Packages (NTCP), after such a successful first year, I can only imagine what 2019 is going to bring. As we begin this year, I want to update you on our progress & how you can continue to help us make this project possible.

We just had a feature in my local paper, and I’m so excited to have had that opportunity! Newbie Tubies isn’t just about packages, it’s about bringing together tubies new and “old,” and to create a space where we can learn from one another and create friendships. Newbie Tubies is also aimed towards the caregivers and loved ones of tubies or spoonies, we want to support everyone as much as we can, in any way we can, for as long as that person is around, tubie or caretaker.

To keep this project up and running I have worked endlessly to find people willing to donate to this cause, or even better, others who are as passionate as I am and are ready to be part of the NEWBIE TUBIE TEAM, and though I got turned down or ignored more times than I can count, I did find a few ladies who are a true part of the team and help whenever they can.

Most of my donors are or were sick themselves or caretakers, and that’s why they make items like tubie pads and thermo-bags for IV fluids, etc. Our donors know the importance of this project, and I am continually amazed at the empathy and support I have gotten from these individuals who I have never “met.”

That said, my 3 tubie donors and 1 heating pad donor, as incredible as they are, they’re also trying to make money from their products, many to pay medical bills. I can’t ask 4 women to donate enough for over 100 packages!

I am always looking for more individuals or groups of people who feel inclined to join Newbie Tubies and the VIP donor program, which means I do everything I can to send people in the direction of the shops who donate to us, and I post on all platforms (FB, IG, blog, twitter, in boxes, etc.) both to thank our donors, but also to “pay it forward” in the way of sending people their way.

If you ‘re interested in being involved but don’t know how to sew or aren’t crafty, I always have tasks I could use help with. We want to include as many people as we can, both on the team behind the scenes, but also for the members of our program/follow our accounts to continue to learn through blog posts and tip lists while also having a chance to interact with others who are also going through this journey.

So, I’m going to share below some of the things we need in order to keep Newbie Tubies as active as I hope to.

 

WAYS AND RESOURCES FOR GETTING INVOLVED:

DONATIONS: what we need and how you can find it

EASY OPTION!

I have multiple lists on amazon, etsy, and simply items you can find at the dollar store or the mini-item aisle at walmart while you’re grocery shopping! I try to make it very easy.

You can also purchase products like art work and vinyl products that I make but put all profits back into the project – every sale helps!!

            We also have guides and lists for what we use and where you can find it! It can be as simple as buying some extra chapstick or germ-x when you’re shopping for yourself.

Amazon link:  http://a.co/4VCstGg
http://a.co/8DNAefV

Link for Sponsoring a book for our “littlest tubies” : http://a.co/1yuuZO2

Etsy link: https://www.etsy.com/people/rsb4fc?ref=hdr

Link for “Tubie Shopping Guide”/ our shopping list: https://positivelyrachel.com/category/newbie-tubies/

Volunteer Survey:

I have so many projects I’d love to do, but I myself am a tubie and a quite sick one at that, but I do all the packing of boxes with the help of two fabulous ladies who come over almost every week to help, and from my Mom, who is also passionate about this subject. When I started the project, I never could have imagined that I would send out over 100 boxes in just a year! Because of how much NTCP grew, and how quickly, I can use help from anyone who feels called or inclined to be involved.

Specifics:   I need some individuals who are blessed with an understanding of technology, something I lack. A few examples:

  1. Etsy! Anyone up for helping me get my page set up? All profits from my sales go towards NTCP, so I would love to sell more, but I’m struggling with the technological aspect of that goal.
  2. Google Drive – I use google for most records and organizational guides/notes/etc. If you know a lot about that, that would be beneficial!
  3. Graphic design and artistic minds
  4. Social media help; posting, advertising, sharing, interacting – I would LOVE for our IG page to be more interactive, people commenting, sharing, getting to know one another, but I don’t do a great job keeping up with it and making it happen
  5. Keeping track of boxes; who got them, who didn’t, how many we do, etc.
  6. Finances and Inventory – track how many packagegs we send out but also what donations we get- money or product, as well as my own sales that go towards it, and the amount I end up spending out of pocket to complete packages

OUTREACH – looking for new donors, sharing posts, and watching for sales we would be interested in.

a. Find other blogs, pages, or articles that relate, we share them or guest post to spread awareness and find new people with their own experiences that we can learn from!

b. Watch for sales, giveaways, and new shops for donating as well as for individuals who may have extra tubes we could use for tubie animals-– often kids who don’t need them and had an extra gtube at home, and it is no longer needed, etc.

Your own PRODUCTS, what do you make? (if anything)- like tubie pads, tubie clips, other medical items, or any other “carepackage” items like bath salts, lotions, soaps, etc., we would love to hear from you!

1.Tubie pads/clips/go bags

  1. Feed Backpacks – converting kids backpacks or adult backpacks to hold tube feeds, pumps, and such.
  2. Tubie Friends: stuffed animals with tubes for little kids – two part project…
  3. Finding the tubes through hospitals, facebook, and contacting the manufacturers and seeing if they would donate any sterile tubes but ones that are either expired or have defects that make them unusable—explain what we are doing and see if they’ll send us tubes- especially button tubes of any kind, but we take anything we can get! (g, gj,j tubes more than NJ/NG.)
  4. Making them! Do you make these or know you can? That could be another upcoming thing based on donations/tubes we can acquire.

 

There are so many ways you can help this project, just sharing it and telling others about it is helpful. We are looking not for more applications – we get countless applications – but for awareness and depth and support from the “normal” world. The goal is to make this terrible thing into something slightly more tolerable through creating resources and opportunities to be yourself and feel what you need to feel, but also to learn and be prepared for all that could come your way ; I work hard to create a resource that gives you so much more than doctors or healthy individuals can.

 

Happy Feeding Tube Awareness Week and thank you for being inclined to read and learn about this fabulous project!

New Years Thinking

Every New Year I like to think, this is my year. I look back on the last year, or really just on my journey in general, and I think of course of my illnesses and my desire to find a cure or a treatment that would lead me to a more “normal” lifestyle, but year after year that doesn’t come. This year, I’m not relying on specialists with new perspectives or treatments that will be approved by insurance, I am instead looking at myself and my situation and thinking how can I work to maximize my experiences and the value of my time? I may never have my cure, and I may not get rid of my medical devices, but I can make the most of the life I have, and now that I’ve been through all the tests and all the procedures and I’ve seen the biggest and the best doctors out there, and here I am, how can I help myself?

I have just as many goals and dreams as I did when I was 16 and healthy, but now they mean even more to me. I want to get back to who I was, who I am, as much as I can. I don’t plan to achieve all of my goals this year, but I think setting myself up with healthy goals and positivity, a hope for a fulfilling life, could be the most effective “treatment” I can have.

I want to be more active, both in a sense of being able to spend more time outside of my home but also being stronger and feeling more fit and less frail. I want to make friends who are here for me regardless of my health and all that comes with that.

I want to fall in love, I want to feel like I am loved and adored no matter what my stomach looks like, no matter what I can or cannot do, no matter what date night looks like. I want to know there is a person out there who doesn’t need to see past all of my greatest insecurities, but is understanding of all I’m working through.

There are so many places I want to go and things I want to do, and I want to be able to do it without limitation, but if I have to work around things, I will. I can’t do a lot of the things on the top of my bucket list right now – swim with dolphins, scuba dive, snorkel in the tropics, etc. – but I can work up to it. If I’m facing a lifetime with health complications, I’ve got to start embracing that and working with it even more than I do now.

It’s not as if I can pick up and go today, I’ve got a few things to try to manage a bit better before I go too crazy, but it’s only January 7th so no one is too far into resolutions, right?

I have to learn to push myself in healthy ways but form a relationship with my body where I am able to feel more control while still continuing to listen to my body. I’m going to start with keeping up with the blog, revamping and working hard on Newbie Tubies, and trying to be more active.

 

Happy New Year 🙂

Embrace It

Illness is not easy in any way, or for anyone. When your life is suddenly pulled out from under with little to no warning, and by something that no one, yourself included, has ever heard of nor can anyone begin to understand, boy does life change.

I got sick in high school, and thanks to some ignorant doctors, my parents were pretty sure I was going to be better in no time. I was a young female so of course the daily, crippling headaches were hormones and all the pains in my joints, nerves and ribs were simply growing pains, because as my lovely doctor said, “it’s normal for young women to be in pain.” Right. Helpful

Well when I got to 2 months of being unable to keep down most foods and was on homebound because I could hardly stand up from bed or be on my feet too long without passing out, nor could I eat or stay awake during school… I finally got admitted and got my diagnosis. Gastroparesis. What the heck is that, right? I don’t even think my doctors knew, because no one told me that it would change my life , forever.

I’ve come across so many medical professionals who have no idea what I’m talking about when I tell them about my health conditions…. EDS, POTS/Dysautonomia, Dysmotility/ GP, SIBO, migraines…. Is it so hard? Well maybe, but it shouldn’t be for doctors.

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My family was and continues to be incredible and supportive in every way they can – even if I don’t always want comfort or support for myself. My mom grew up in a family where the flu wasn’t a real risk, a fever was just to keep you flushed and warm, and complaining wasn’t an option. What’s a doctor, right? As long as you could walk and your eyes looked strong, you were good to go – dress nice to feel nice.

To the point, my mom quickly adapted and came through for me and after some rough times in the earlier years, we grew closer than ever as she became my home nurse doing anything from making and hanging my feeds and fluids, sorting my weekly meds, helping me shower when I can’t do it on my own, brushing my hair even though I’m terrible about it because it hurts… I don’t know what I’d do without Nurse Bibi.

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My dad and I have a different relationship, but it is so important to me, even if I have trouble showing it sometimes. He’s here for me no matter what, any time, any day. We go to out of town appointments and listen to fun music, joke around, etc. He helps me relax before appointments when he knows I’m anxious. He also lets me sleep or supports me when I want to do something else.

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That reminds me so much of my year round, travel swimming days when Dad and I would drive to the meets just the two of us because I was so shy and didn’t have friends on the team, but I got dad to myself and we had so much fun. Dad also taught me how to drive 🙂

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My little sister, Laura, has been majorly affected by this situation. She was looking forward to be the only one left at home while I was at school, but here I am. She graduated high school and is now in college. Pretty soon she will be ahead of me. Shes beautiful and gets more attention from boys than I ever did, even before I became the lost girl in the woods! But Laura harbors a lot more feelings and trials than she lets out. I’d do anything to take that back, but I don’t have many options. I’m sorry to put you through that, Laura. I wouldn’t wish any of this on anyone.

Mom and Dad have different love languages, and so do I, but I have to remember how much my family does for me, and I have to put aside any pet peeves that I can in order to truly show my appreciation and love. I’m not great with words right now, I don’t love physical touch, but I do well with actions and giving gifts or sending/writing out my feelings. That, however, is the opposite from others in my family. Dad loves physical touch/hugging, mom loves actions, Laura… probably actions that follow words. Don’t lie. Don’t make anything up. Don’t take credit for something you didn’t do and don’t deny something you did do. Make sense?

Life is short, right? So  embrace every day, and then really embrace the people you love. Can you make a sacrifice or step out of you comfort zone for a 15 second hug? Or a dollar store gift? It’s the thought and the effort that count, most of the time 😉 Family, by blood or by love and loyalty, are the ones you end up needing. It’s never too late to start appreciating people more and treating them as such.

Chronic illness can affect more than just the patient, when you have caretakers and live at home with family members, parents, or your spouse, they all suffer and worry and work so hard throughout the journey. So when you think about the patient and regularly check in or want to be of help, I can tell you that the caretakers (For me, my parents and my little sister) need just as much TLC as I do. It’s also so important for me, the patient, to take time to appreciate each of those people in my life, make sacrifices for them as they do for me, and treat them in the best way I can, even when I’m feeling terrible. This isn’t a battle anyone should fight alone.

 

Love and be loved, go out of your way to support and care for those in need, it’s the best thing you can do for yourself as well as for others.

 

Chronic Illness Tips for the Hard Days

 

Sometimes physically difficult days can also lead to mentally and emotionally challenging days, and if you’re alone or unable to distract yourself, these days of discouragement can turn into weeks of depression, so I want to share some tips on what to do on the difficult days — this applies to spoonies, tubies, mental health patients, and really anyone in general– everyone has bad days!

  1. Get up and change your clothes – This is one I’m often guilty of during my homebound/bedbound times, so I know it can be one of the small hassles we often put off when we are having a bad day or an unmotivated day due to pain, nausea, fatigue, whatever it is for you that day. That said, sometimes just putting on a new pair of PJs, a super comfortable t-shirt dress, or sweatpants, whatever it is that you’re comfortable in, can make you feel a bit fresher and lighter, ready to take on the rest of the day (in bed) 😉
  2. Self care – simple at home or out and about, face masks, nails, Epsom foot soaks, whatever your favorite thing is—
    1. showers optional if you don’t have the energy – one day doesn’t kill ya. (neither does 2 days….3 days? 😉 ) I’m no shower person w/ POTS and GP, but the body adjusts amazingly when your body is adapting to changes like these. Buy some great shampoo and then dry shampoo & leave-in products and you can easily get away with washing your hair once or twice a week. It takes a bit of time, but your hair starts adjusting and working to stay clean longer.
    2. Some people love doing their makeup, even if it’s just for themselves at home! If it makes you feel good about yourself or makes you feel more like yourself, do it! Lay in bed with that red lip stain, work it girl.
  3. Even taking a walk or doing some stretching can refuel both mentally and physically – laying in bed all day/all winter can cause more pain…. Easier said than done, but finding your favorite way to get up and moving — walking, dancing, yoga, biking, etc. — can be great for you in so many ways.
  4. Call up a friend—just have a movie night or go get your nails done, doesn’t have to be crazy night out, just some fun, time to enjoy yourself and for a moment, maybe, forget how crappy you feel.
  5. Dogs are top notch medication/therapy and the most reliable members of our support systems 😉 Find a dog, get a dog, rescue a dog, steal a dog, borrow one… they’re everywhere, and they need love as much as you do!
  6. Listen to music or get out your favorite coloring book or paints and use that creative brain in there! Sometimes all you need is a little bit of a distraction, a different focus for your brain, even if it’s just for 15-20 minutes!
  7. Take a drive. Cant walk? Take a drive with your family/friends/caretaker and just get some fresh air, get out of your house for a little while. See the outside world.
  8. Do YOU. What makes you happy? When do you feel your best physically and/or emotionally? Whatever that is, do it. Drop what you’re doing, take any meds you need to / can so you are comfortable (ish) and follow your spirit, your heart—your body may hate it, but sometimes an outing or a self care distraction can do you wonders.

 

Follow your heart, listen to mind and body, and don’t be afraid to express your emotions. If you can, talk to your parents, siblings, significant other, or friends/loved ones. You can also find so much support through online support networks, one huge gift that technology has shared with us; friendships with others with your conditions can be incredible, its a feeling of life long friendship with someone you’ve spoken to online for a few months and then in the years to come, through your worst flare ups and your toughest, lowest times you are being supported by someone you’ve never met in person, but someone who becomes the person.

Find your happy. Find your happy in activity, find it in hobbies and in friends or animals, in art or cooking, in working or advocating, but most importantly, find your own happiness that comes from within your own self. Love yourself, care for yourself, and don’t doubt your strength. When you need to be reminded of your worth or your strength or your beauty (inside and out), remember this, remember that you are your harshest critic, but you are strong enough to push through anything if you are strong enough to live with chronic illnesses. There’s nothing harder than this, so stay confident and have faith in yourself, care for yourself in any way you need/want to, and remember that YOU and your health, mental and physical, come first. You are worth it, worth so much more than any words I can put together, so I think I’ll call it here:)

 

 

Newbie Tubies: How to Sponsor A Package

Time for a Newbie Tubie Update! I am so excited to share that Newbie Tubies has had a huge increase in the number of applications we have received for packages. This is fabulous news, I couldn’t be happier to have this project be so successful and to be able to help so many new tubies adjust to life with feeding tubes.

In all honesty, this huge increase in apps is also a bit overwhelming for me, as a tubie myself, being the one who goes through each application and has to approve or deny each applicant, each fellow tubie… it’s not an easy task! But when I finally get to begin picking out items and pack each package, specialized for each unique, first time tubie, I’m reminded of why this is important work, why I started this project in the first place.

Being able to do this is such a gift, it’s a gift for the tubies who receive the packages, but it also a gift to me and to anyone else who has the chance to experience what it is like to help others go through this strange and misunderstood transition.

Many people have offered support in a multitude of ways, but to share this incredible gift with more people, both tubies & “normal” /healthy people, or donors, I’ve decided to begin offering the opportunity to sponsor a tubie package. I will always take “blind” donations, but if you are interested in knowing where your money is going, or if you want to do the shopping yourself, I am so happy to share this experience with you.

I have applications for new tubies of both genders that range from ages 0-30years and sometimes older.If you’re interested in sponsoring someone close in age to you or your child, I can almost definitely find you an application that fits the bill. I will not be providing any personal information about the tubie, but I will provide a list of that individual’s interests as well as the “Tubie Shopping List” to help guide you in your shopping; you can also add in anything else that would fit in the package and make sense for your tubies age/gender.  After you shop, I would add in the tube items that you likely wouldn’t be able to get on your own as well as our tip lists, donor lists, and Newbie Tubie info before shipping it off.

This process is very similar to the angel tree or shoe box gifts you often see around Christmas time, but this is year round and a bit more specific. There will always be tubies in need of support; sadly, the medical system doesn’t always do a great job at preparing children, parents, young adults, etc. about the transition period to tube feeding or what it means long term. A lot can go unsaid which leaves a lot of room for confusion and unnecessary panic.

**With a donation of $25 or more, you are paying for shipping ($14) and helping pay for some of the extra items in the packages. $30-$45 would sponsor the whole package, all supplies and shipping.

***If you donate $25 or more, you can sponsor a package AND get a painting of your choice from the selection in this album, all of which are originals made by me, Positively Rachel’s Art.***

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I do, of course, accept monetary donations, as well; monetary donations play a vital role in covering shipping costs– each package costs $13 just to ship! So, whether it be $5 to help me buy a few new mini hand sanitizers or $50 to cover package & shipping (maybe more!), you’re helping make this project happen. For that, I am thankful, and you should feel good for helping others during a hard transitional period in their lives that (most of) you can be glad you won’t ever have to deal with. (knock on wood)

My artwork is where majority of Newbie Tubie funds come from; I sell abstract, acrylic paintings and notecards with prints of my art/photography as well as bags, onesies, shirts, and more with vinyl prints to spread awareness & raise funds! You can order my art through the blog or through private messaging (instagram, facebook, email), and I do take custom orders as well; all of my profits from the art sales go towards what supplies are not donated & shipping costs for Newbie Tubies.

The easiest way to donate or pay for paintings is through paypal (rajinone@aol.com), but I do take cash and checks as well.

This is a stellar opportunity to do something really meaningful, to pay it forward.

Help me by sharing this, if you’re a tubie/spoonie or if you’ve received one of my packages, share how the packages helped you, share a bit about the challenges or what you’ve learned in your journey.

Thank you for reading, donating/purchasing, and for supporting both the Newbie Tubie packages and my art.

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instagram: newbietubies (or) positivelyrachels_art
positivelyrachel.com


Facebook Art Sale/Sponsorship:

https://www.facebook.com/media/set/…

Must Haves for Tubies: A Guide to All of Your Tubie Essentials

Preparing for your first feeding tube? Or just adjusting to life with tubes? Here are some tips about some tubie essentials!

**always talk to your doctors when changing/adapting any parts of your treatment plan, my posts are strictly personal experience/personal research– I am not a medical expert, aside from my years of illness 😉

Gauze and/or Tubie pads—

Gauze and tubie pads serve the same purpose, they keep the tube site (aka the stoma) clean and dry, soaking up all excess drainage and keeping all outside gunk away! Some tubies have more drainage or granulation tissue while others hardly have any at all after the stoma heals from surgery; if you have a lot of it, continuously, gauze is often (not always) the best option. Tubie pads are much cuter and don’t require tape, making them easier on the skin. Some people use both, many people develop a preference as to which one they use, but either is a solid option for keeping your stoma clean and “happy.”

 

Great places for tubie pads (& great donors for newbie tubies!):

Homemade Tubie Happiness (on Facebook or Etsy)

Tubie Whoobies (Facebook)

Dorky Little Etsy Store (Etsy)

 

Syringes

 You’ll use syringes every day, you have to flush during and after feeds to keep your tube from clogging and many tubies take medications through the tubes, using syringes.

You can get various sizes and types of syringes, anything from a 1-3ml syringe (not used for tubes as much as for central lines), to 10ml, 30ml, and 60ml syringes. Luer lock syringes have smaller tips that can have needles screwed into them; they work best for flushing water/feeds through and the smaller ones can push clogs through. Slip tip/luer slip syringes have longer tips that are better for medications as they allow the dissolved meds pass through easier and leave less behind.

Your home health company should provide syringes, but if they don’t have the kind you like or don’t give you enough, you can buy mass quantities for cheap prices online.

 

Qtips, clean wash clothes, natural soaps

Keeping the tube(s) clean and dry is SO important. Change the gauze multiple times a day and pay attention to the stoma—clean gently with a warm, wet qtip when changing the dressing and wash with a cloth & natural soaps during your showers/baths/etc.

Don’t leave excess blood or drainage on the skin, it can cause irritations, itching, or pain. Some drainage and blood is normal, though. It’s no reason to panic.

 

Tapes/adhesives

 There are many types of tapes and adhesive bandages, as you go along you’ll figure out which best suits you! Your infusion/home health company should provide you with tape, but if they don’t or you don’t like what they give you, there is tape in any pharmacy or any store that has a health section.

Paper tape, transpore, or medipore tape are two of the easiest on the skin, but paper tape doesn’t last as long or stick as well and it is not water proof. It may take some trial and error, but you will figure out which works best, and if you use tubie pads you won’t need as much tape!

You should get tape from your home health/infusion company, but if not you can find it online or at the pharmacy.

 

Stoma creams/ointments—

Your tube site, aka your stoma, may cause you discomfort on and off even when it has healed. There are a lot of options for ways to try and minimize discomfort. You should ask your doctor before changing any part of your treatment plan, but these are some options to talk about…

Itching? Hydrocortisone cream, Benadryl cream

Pain? Lidocaine ointment

Skin irritation, granulation tissue, or bile burn? Try granulotion, calmoseptine, sudocrem, or any other barrier cream your doctor recommend

All of these items can be found on Amazon, at a pharmacy, or from your doctor…

 

Tubie belts, button covers, and tube clips

Along with tubie pads, you can get tubie belts and button or port covers that are especially helpful for children with feeding tube. Belts and covers help keep the tubes still and in place while being used or while not being used so that kids are less likely to mess with/pull on their tubes and cause harm to their tubes or themselves

The tubie clips help keep the extra tubing from dragging or getting caught on things when you are feeding on the go. These clips work well with backpacks and/or IV poles, whatever suits you. They’re cute and simple but can save you from yanking your tube out by accidentally stepping on it or getting it caught while moving around.

All of these items can be found on Etsy, a few of the best shops to find these?

Tubie clips: Crafting for a Cure Co. (They support Newbie tubies with their sales!)

Belts: Kangarootique (Etsy)

Heating pads

Heating pads help with pain, nausea, bloating, and so much more. You can get electric heating pads or microwavable ones. They come in all shapes, sizes, and patterns and you can get them anywhere– amazon, walmart, any pharmacy, or etsy.

One of my favorite Etsy shops and one of Newbie Tubies largest donors: Divine Comfort Rice Pks

Tubie Awareness Gear:

 Be loud & proud about being a tubie; there is no shame in having a feeding tube. There are so many cute shirts, bags, and accessories that help being a tubie be a little more glamorous. Don’t be afraid to let others know about your tube, awareness and confidence are important, and you never know who else may be out there with a tube hidden under their shirt, too?

A few places to find cute tubie apparel:

Tubie Love Gear: http://feedingtubeawareness.bigcartel.com/

Newbie Tubies: instagram @ newbietubies and/or positivelyrachel.com

 

Hopefully this information was helpful! For more, check out our tips list or visit my good friend, Carolanne’s blog, here for more information on tubie products!

Tips for Tubies: Tubie Love & Acceptance

I never could have imagined needing a feeding tube at 18 years old, and now, at 22 years old, I am still relying on my tube(s) — now I have two tubes and a central line. I’ve had tubes for so long and learned so much that now I’m able to teach others about them! My life took a huge change in direction when my health took a turn for the worst and had my tube placed; suddenly I was experiencing so many changes in my lifestyle and my body. I began to feel like I had zero control over my own body, and everything I had planned for my life, my future, began to slip away with every day, month, year, that my illnesses progressed. My feeding tubes took a little while to get used to, physically and mentally, because they cause bloating, they stick out through certain clothes, and they can leak and be kinda gross…but they also saved my life.

Learning to love your feeding tubes as well as yourself, both your body and your lifestyle, can be a challenge at first…I struggled for a long time to find confidence and acceptance of both my body and my tubes, I still struggle almost every day to pick out a shirt that doesn’t hug my tubes or my central line too tight or pants with a waistline that doesn’t hit my jtube… it’s not easy to feel confident when you feel like you’re the only one who looks like this, the only one with tubes, alone in the journey you’re facing.. my goal is to help others feel less alone.

Here are a few of my tips for adjusting to tube life and learning to accept the tubes as well as all of the way those tubes affect you, your body, and your lifestyle..

 

1. It can be hard adjusting to tube feeding and not feeling in control of your own body, but you should never feel ashamed of the tubes or the changes they can bring to your body. These tubes keep you alive every day. It may take time to come to accepting this addition to your body, and that’s absolutely okay, totally normal; but always remember that health comes first!

2. You get a feeding tube to restore your body and increase both strength and energy. Feeding tubes may be a bit of a pain, but they are meant to give you your life back, not take it away. Never give up on your dreams or your goals, although everyone’s healing times are different, and we all have different underlying causes/conditions, feeding tubes themselves don’t need to be looked at as a disability or a limitation; in fact, for many, they are the opposite.

3. Trying to eat while you’re a tubie is not anything to be ashamed of, and it does not invalidate your need for your tubes. Many people (with tubes) have a couple “safe foods” or still drink liquids, some can only suck on a piece of candy here or there, but either way, food or no food, you are still you, and only you know your body. If you can tolerate any oral intake and your doctor is okay with it, attempting to keep your system “awake” even with an occasional, tiny snack can be good and in no way invalidates your need for a tube.

4. Try to stay social! Being so sick and having a surgery like this often leaves one feeling exhausted, worn out both physically and mentally from the pain and inability to care for ones self; when getting out of bed is a painful challenge and showering takes more energy than was stored up for a whole week, it’s easy to get discouraged . Getting dressed and going out takes a ton of energy, but it is so good to get out, it’s too easy to become isolated! Friends will only take rejection so many times before they stop asking to hang out; even just suggesting a movie night or spa day at home is a great option to see friends, make plans, but not use as much energy. Your health comes first, but part of taking care of yourself means taking care of your mental/emotional health too, and having a healthy social life and support network is so important during times like these.

5. Feeling down in the dumps? During recovery and during challenging times throughout your journey it is so easy to slip into a “chronic illness mindset,”  which essentially means that to some degree, many have a time of feeling a loss and grievance over a “pre-illness” self, a self that can begin to disappear when illness takes over and we lose some of our abilities to function in the “normal” ways, or in the “normal,” functioning world.

If you sense yourself falling into one of these times, I highly suggest finding a way to remind yourself of your goals, your dreams, yourself. Try creating a vision board, definitely one of my favorite ways to remind myself of where I was before illness and where I want to go now, what I want to do in my future, and all of the things past, present, and future that give me hope and motivation. Just begin by thinking of all of your goals and dreams, even the totally unrealistic ones (being a mermaid, traveling the world in 30 days, learning to fly, etc.), and cut out pictures and words and quotes in bright, bold photos or lettering and then make a collage on cardboard or a tack board, heck put it on your wall if you want!  Hang it in a place where you spend the most time and allow it to encourage happy thoughts and positive thinking 🙂

I know people saying “mind over matter” and “just think positively, distract yourself” can be really frustrating or degrading, but positivity really is important if you want to make it through these transition periods and through your journey with chronic illnesses in general.

 

I plan to continue with more tips soon as well as some personal experiences with tubes, both good and bad 🙂 I am also going to be making a new vision board, and I will post a guide of how I did it when I can 🙂

Thanks for reading, don’t forget to check out the tubie items & artwork in the shop! Every purchase supports the Newbie Tubie Project, enabling us to send out another package & help another tubie adjust to life with tubes.

xoxo

 

 

** i am not a medical professional, just an experienced tubie sharing my experiences as well as those of other tubies who help me compile information to help inform others about what “tubie life” is like and how to make the best of it 🙂 Please consult your physicians before changing any medical treatments/procedures.