Into the COVID Holidays We Go

For as long as I can remember my mom, my aunt, my grandma and I have gone to craft shows together during November and December and done a huge amount of Christmas shopping. I love this tradition because of the time spent with my mom and the other women of the family but also because we support so many small business owners, we find fantastic, handmade gifts that our loved ones won’t be expecting and we support individuals who put such time and creativity and passion into every piece they are selling. 

We’ve entered what is obviously going to be a very unique, unprecedented holiday season. I think there is some nervous energy and anticipation because of all of the unknowns, but the holiday spirit will nonetheless take over as holiday music and movies flood our car radios and TV guides and suddenly pillsbury cookies with turkeys and christmas trees are next to the pumpkin pies in the featured aisles in the grocery store.

Since we’ve entered flu season the risk for COVID19 has obviously increased as well and we are all faced with questions like how do we celebrate the holidays this year? Is it safe for our extended family to gather? Or even to travel and get here in the first place? Are the school aged kids safe to be around the grandparents? How do you social distance or keep masks on when you’re gathering for Thanksgiving supper or Christmas morning gifts? 

What about black friday? Christmas shopping? Christmas church services? Baking day? All of your traditions that involve people, food, hugs and kisses…

Sadly, COVID19 will be playing part in our holiday happenings this year, but that doesn’t mean we won’t have opportunities to make it a beautiful, meaningful holiday season. It will be one of a kind, new territory for all – we know at least that much! 

Here’s the thing… for some of us, these aren’t new holiday complications. The COVID life isn’t so different from that of a chronic illness warrior who is sick to the extent of being homebound or even bedbound. We have always had to wear masks during flu season and avoid anyone who has been sick, even if that means skipping family gatherings or school/work. It can become an isolating time, you don’t get many visitors, it’s often just you and your caretakers, your family members, and your outings get as exciting as taking a drive on the back roads with your camera, capturing the sunset or if you’re really lucky, the bald eagle. 

So you can see how this time in quarantine has just amplified that spoonie lifestyle, and heightened the isolation, as even going to the doctors office is risky,   going to 7-11 to get a drink on the way home, running to the dollar store to get items for packages, heck, even mailing the packages is on the no list for me now. (Wear your masks, please. )

Thanksgiving can be a tough holiday to feel really involved in, really comfortable going to as a gastroparesis warrior/tubie. It is all food, the air filled with the smells of meat and pie, and there are so many loud kitchen sounds and multiple conversations going at once, lots of beautiful laughter, and oh so many forks tapping on the fine china around the table. When you are sitting at the table but are not partaking in the meal it’s hard not to become hypersensitive to all of the little noises and to be overwhelmed keep up with the conversation when you really just want to burst. Or eat. Or go in another room and just be. 

It can be difficult to adjust to being in a setting like that. For me it’s not about people eating in front of me, it’s more that it’s a holiday tradition that is suddenly stolen from you, it’s a bit different than a normal family meal or hanging out with your friends while they have a snack or whatever. This is something the whole family is doing, it’s more than a meal, it’s a celebration and a tradition, memories made, memories being talked about, but when you feel so sick and you can’t sit there any longer without getting sick, you learn to seperate yourself. 

Thanksgiving is a time to spread awareness, to encourage others to be thankful for something that everyone does all the time, so many times a day in so many settings without a thought, that has been taken from so many of us – the ability to enjoy food. The ability to be independent, to work and go to school, to live on our own…on thanksgiving, though, mostly focus on the eating :). I always encourage my readers to mention this to their family and friends on thanksgiving or any other time it pops into their minds, even just having froyo with friends or at lunch at school, whenever and wherever, take advantage of it and remind people that even the most natural parts of life can be taken out of nowhere. 

COVID19 is (hopefully) something we won’t have to alter our lives for forever. They are working hard to find a vaccine, to find an answer to get us back to real life and out of global crisis. Thank god. But for those of us with chronic conditions, we will continue having to alter holiday traditions, continue feeling out of place at times, continue wearing masks during flu season; our lives were complicated in these ways before COVID and they will be this way post COVID, but this year you have gotten a taste of our situation, and that’s something. 

Honor our struggle by not taking these limitations for granted when your COVID experience comes to a close.

Chronic Fatigue Battles Adrenaline

So I am gonna go out on a limb here – I feel like it is probably safe to say that we have all heard or said the phrase, “I’m too tired to sleep,” right?

If you have not heard it or you don’t know what the heck it means, just keep reading and I think you’ll understand by the end of my post! If you don’t, feel free to ask 🙂

One of the worst, but most commonly understood struggles that comes with Chronic Fatigue Syndrome and Dysautonomia/POTS is when you wake up from a “solid” nights sleep and you still feel exhausted. You have a full day ahead of you with no energy? I mean, does anyone else feel like you have energy when you don’t need it but are lacking when you need it most?

Chronic fatigue is a really difficult condition to live with. It almost always shows itself as daytime fatigue – chronic fatigue, duh right? Okay, but that absolutely does not mean you are guaranteed a solids night sleep just because you are exhausted, right? Duh! You can have chronic fatigue and sleep all day and night and still be physically and mentally exhausted. You can sleep all day and be awake all night, and not by choice, not because you’re out partying or staying up watching movies and eating ice cream, but laying bed in the dark, exhausted and trying to sleep…

Fifth grade. I was in fifth grade when my insomnia came to life, so I’m a pro by now. I also have hypersomnia, something most haven’t heard of but essentially, I’m exhausted all the time and require regular rest, often times a nap or two throughout the day, & on my bad days, I am sleeping more than I’m awake. What really complicates things for me is the hypersensitivities, adrenaline rushes and narcoleptic spells.

Majority of the time I am extremely fatigued, mind and body, but there are times when I am feeling such exhaustion paired with severe pain and whether it be due to pain, fatigue, or medication, I slip into an adrenaline rush that takes me from 0-100 in the snap of your fingers. These adrenaline rushes most often hit when I’m in a state of physical and mental fatigue & exhaustion and are in no way healthy, pure energy –  it does not come after a good nights sleep or a killer cat nap, it doesn’t occur when I have plans made and am looking forward to that, it is a surge of adrenaline that hits at any time, lasts who knows how long and sometimes, for what feels like a minutes time, masks my exertion, distracts from the pain, and allows me to have a little, tiny taste of the energetic, alert, and active person I was before I got so sick.

You know those anxiety driven dreams we have about showing up naked to school or tripping and falling in front of a new crush? Well, in the life of a spoonie, those dreams come true! I have had more than my share of awkward hangout happenstance, with both old friends and new friends, most of the latter never having asked to hang out again. I’ve fallen asleep at a bar, in someone’s car, had to take IV meds plenty of times, plus just telling people about it all is always kinda awkward since people don’t know how to react, but basically every “get to know you” question leaves me with a blank if I am trying to avoid talking about my health situation, so it’s better to be up front about it than to try and make things up. I have yet to try to go on an actual date with a guy I might like since getting so sick, but if it’s anything like making new friends, I think I will hold off for awhile on that.

I am often able to be up and about and even get more done during one of these rushes; I definitely communicate more, sometimes talking fast and nonstop, rambling on about who knows what and driving my family crazy, which can be a hint I am having one. Though annoying, I think my parents sometimes enjoy my less than legit bursts of energy b/c I am more like my pre-illness self when I’m hyped up, so yes, we know they aren’t “normal” energy but what about me is normal? 

The challenging thing about this is that these rushes can last 30 minutes or 3 hours, but once it’s over, it’s over and I crash HARD and FAST. When I go down, I go down, and depending on what I used that “functional time” for, I often require a day or two of recovery time. Usually, though, it is so worth it.

That said, I’m thankful to be having less and less narcotic episodes – I am almost 6 months “clean,” aka no longer falling asleep standing up or mid sentence. I have found a couple medications and lifestyle routines that help allow me some sense of freedom or independence since I’m not being babysat 24/7 – I have plenty of photos of myself sleeping in different locations thanks to my family members who like to send them to one another. I have my little tricks for revitalizing and also know what symptoms to look out for and when it’s time to cut a social visit off before having it spiral into “no second hangout” zone. I’m ready to go.

Being sick for so long and going through so many surgeries, procedures, tubes and lines and changes in my body I just don’t have a great self confidence, I’m uncomfortable in my body physically and mentally, it doesn’t feel like MY body. I was a fit athlete, a healthy eater, I spent hours at the gym every day before I got sick, and now I have so little control over my body and it’s not easy. I have to remind myself that I am worthy and able, that I enjoy every outing I say yes to, that meeting new people has been fun, even if, for whatever reason, we only hang out once.

The world can be an intimidating place when you are isolated from it for so long. It’s not easy to navigate as a medically unique introvert who leads a very unusual life, but if you just look past that and into who I am, I’m really not any different. I may have a unique perspective on things and a pretty open schedule, but that’s about it 😉 Oh, and I won’t eat your left overs, heck, I’ll cook for you and still not eat your left overs 🙂 Who can beat that?

I want so badly to be part of the real world, but my body is fighting so hard every step of the way, almost as if it has a mind of its own and wants me all to itself. It’s an every day battle, all I want is for my mind and body to be one, to feel like one, to function like one, to be a full person, a whole woman again.

So even those short periods of relief from pain and the unpredictable, short-lived bursts of adrenaline have the ability to give me a taste of the world, a taste of life, a taste of ME. Not sick me, not poor Rachel, not anything aside from just being ME. It reminds me that there is a life out there that I am fighting for, that my life outside of illness is worth fighting for…

I WILL find my way back to being just Rachel.

Until then,

xoxo

The Myth of Malnutrition

Lets talk malnutrition. 

Malnutrition is one of the most misunderstood medical concepts; it’s complicated and can present itself in so many different situations and with differentiating signs and symptoms in different people. When you hear malnutrition you probably think of pre-me infants with failure to thrive, kids in africa, or people caught in blizzards on Mt. K, right? The extremes? 

What you don’t usually think of is 16 -30year old females who have previously led healthy, active lives but all of a sudden stop processing food. And then there are the little kids, 3-8 year olds who just cannot absorb nutrition and gain weight and strength like they need to be doing at that age for developement. Can you imagine? Most of these people end up on tube feeds or IV nutrition in order to get nutrition and hydration, in order to stay alive. 

Another myth about malnutrition is that you must be skinny if you’re malnourised. I mean if you can’t eat you lose weight right? No brainer. But no, that’s not how it always works. The body can do one of two things when you are malnourished, it either begins eating away at any extra fat cells you have and then eventually turns to muscle as well, leaving you skinny, weak, and easily dizzy, clumsy, tired, and in pain, OR your metabolism shuts down and you begin packing on ANYTHING possible, any sugars, carbs, liquids, etc. are stored as fat and you begin gaining weight even if you hardly take in 200-1000calories a day.

Being a “gainer” as they say can be extremely difficult both physically and emotionally. You aren’t eating, you aren’t getting to enjoy your favorite foods, yet you’re packing on weight with no explanation. It’s unfair, it’s uncomfortable, and it’s often extremely difficult to turn around, nearly impossible to reverse no matter how hard you try, no matter how much you exercise or how little sugars or carbs you take in. 

People who are not educated on this topic don’t always take people seriously about their nutritional level if they are not underweight. They must be lying if they are gaining right? Wrong. Our bodies are just different, and we may not know exactly why, but it happens, and that’s a fact, not a myth.

 

Medical Madness: Survival of the Introvert

I’ve always been a bit of an introvert, my parents often tell me that when I was young, my teachers said I hardly spoke a word, I was polite and hardworking, but quiet as a mouse, which my parents thought was odd since I often talked a lot at home J I’m shy and often have trouble making friends, I have always hated confrontation or having people be upset with me. I worry about running late or being in the wrong place at the wrong time… I’ve got a lot of thoughts and opinions and knowledge, but being introverted and having trouble sticking up for myself in tense or questionable situations, it can be a major downfall when you’re living like I do.

Getting sick at such a young age with conditions that so many doctors don’t even know about let alone know how to treat. Since I was young and still living at home, my parents were always with me at doctors appointments – still are today J — and they were able to help me express things fully and ask all of the questions I needed to, ask for help with whatever needed more attention, but I still often got overwhelmed.

Being sick so long I’ve begun running my doctors into retirement, and of course with that comes the need to begin the draining search for new doctors, a task that brings difficulties in many ways. You’d think that after almost 8 years I would be able to do this on my own, to handle doctors and keep focused and calm and get everything out of it that I need, but that’s just not the case. You never know what you’re walking into with new doctors; each has their own protocols for testing and treatments, they believe in different approaches, and you have to explain your history in detail, which gets longer each time.

There are so many biases against girls like me with “invisible illnesses” simply because of my age, gender, and appearance, and the worst part is that those biases and judgments don’t just come from stupid high school kids or young adults, they come from doctors, from insurance, from pharmacies, from all of those who are supposed to be the ones making my life, making my body at least feel a bit more comfortable, a bit more active, a bit more NORMAL.

After a few bad experiences with doctors and nurses and hospitalists, some being members of my own care team, the medical professionals who hold my life in their hands, and that kind of brutal betrayal can lead patients like myself to extreme anxieties and even medical PTSD, which makes finding new doctors a terrible thought, a stressful time for me, and on top of that, I have to be brave enough to get through these appointments feeling like I’m in good hands.

Doctors are supposed to “do no harm,” but that concept is flawed and misinterpreted sometimes; “do no harm” isn’t a pledge meant just to protect us from doctors intentionally causing harm, doing things to make us sick or cause us pain, etc., it means do all you can to help your patients no matter who they are and what they have. There’s so much that happens behind the scenes of the medical system, doctors with prejudices who feel they have a right to be rude and judgmental and negligent when we know something is going on and we are asking for help. Negligence is a crime just as serious as purposeful, physical harm.

Why do you get to decide what I’m feeling, what the symptoms or side effects can or cannot be based on a decade old case study instead of putting trust into the patients, the ones living this, the ones suffering every day while the professionals get to wash their hands and go home without another thought of how their actions or lack there of are affecting us. I may not be a medical professional, but I am definitely a chronic illness expert, and if doctors could truly understand that, we could work together, creating trust and mutual respect.

A wise woman once told me that I need to remember that doctors work for patients. I think doctors forget that and take advantage of their position and their capabilities, the things that only they can do or get their hands on. We need doctors, we need the resources they can give us, but they need us, too, and they need to keep in mind that those of us with chronic illnesses aren’t your average patient, and we know our stuff.  No one knows chronic illnesses better than the patients themselves.

Since there are no options for spoonies to join the medical field based on our personal knowledge and research, it would be incredibly beneficial if our doctors and insurance agencies and dieticians, pharmacists, etc. would take us seriously and use our advice, consult with us more so than just making the decision and saying that’s that.

We do so much of the work, so much of the research, and all of the first hand experience, yet we still rely on the “professionals” who are making these decisions without listening to the answers we are offering.

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.

Where’s the Cake??

Ahh, 23, another year that I fought my body and won- Rachel 23, EDS 0 – unless we are talking about quality of life or day by day challenges, but I made it, and that’s more than I can ask for.

Birthdays used to be SO important to me, like I was planning for my birthday as soon as Christmas was over, maybe before (my birthday is in March), and I wanted themed parties with lots of decorations, my friends, and most importantly, big cakes with lots of ice cream and lots of presents- not sure which was more important but those two were my priorities.

I remember being a ball of energy during March, intense and particular, but my parents never failed to create a beautiful, magical party for me. I was never disappointed.

All three of us kiddos had March birthdays, I was convinced for a good while that I was the oldest just because my birthday came first in the month 😂 That however didn’t hinder my celebrating, I was probably just 4 when I started planning parties ahead in great detail – I would make a fabulous party planner, though I think I was more decisive when I was 4 than I often am now.

I’m thankful to have such happy memories, and though I ate too much ice cream and put on some pounds in my childhood, I’m glad I enjoyed it while I could 🙂

Birthdays since getting sick have been a lot different! This is my sixth birthday with gastroparesis and dysautonomia, though the first and second year I was still able to eat a bit, so cake still happened in small amounts, until my 19th, I believe. Birthdays, like so many parts of our social norms/traditions/simple day to day outings or socializing are centered around food & gifts. So, what’s a birthday without a birthday cake? Well, it can be so many things…

You know people always say, “Age is just a number?” Or “do you feel any different?! Older?!” When you’ve really just aged one day – when you go to bed you are 23 & 364 days and the next morning you are 24 ?—yeah, okay party pooper, I know.

It’s just, at this point, I’m not super concerned with my birthday, and though it is nice to know that people are thinking of me, I just don’t want or need much of anything that I don’t have, and that is a blessing.

Of course I would love to be healed, if you have a cure, lemme have it, but I don’t think this is the year for the cure, though I hope it comes ASAP! I’m hoping for more relief, more energy, and less pain – definitely hoping for less pain and better pain management. Aside from medical wishes, I’ve had a tough time thinking about wants/needs, which isn’t a problem I’ve had a lot in the past 🙂

I would not call myself materialistic at this point in my life. I have so much and I don’t need anything, and I want so minimally, the greatest gift I can ask for is a day full of love, laughter, positivity, and simple pleasures. There’s nothing that means more to me than my family, and seeing them joyful and peppy, feeling at least a bit less of the burden that they face day to day is more meaningful than any gift I could be given. My parents are incredible, and I don’t think I tell them often enough, but they’ve done nothing but care and support us, they stick by us no matter what and do so without hesitation. I’m so thankful to have the parents I do, and I hope they know that.

Though I can’t have cake and I’m not up for parties or gatherings, having people, my parents and family included, celebrate and fulfill traditions that feel almost “normal,” and being treated almost like I’m not sick, like I’m “normal,” is a true gift. Trying to avoid talk about my medical situation and the troubles and challenges and moments missed due to that and having less questioning, less concern from all in my life creates a safe and fun and lovable environment for me as well as for others. A happy Rachel is a happy family, right?

I want to be boring and normal, so treating me like that, though not always easy, is a gift that allows me feel normal, and that’s all I want.

There’s nothing more important to me than my family (dogs included), and there’s so much on their shoulders though out this journey, and that’s hard for me to accept, but the times we spend doing fun things, even as simple as taking a drive, are the best times. I can’t afford to waste time, I can’t afford to hold onto anger or sadness because I can’t waste a “good” day or a good hour, so positive energy, simple pleasures and laughter, joy, harmony, these are all things I strive for.

Though you may not fully understand or even be completely comfortable with my ideas, the best gift is having others who want to embrace those times and help me make it happen; I have to live my life to the fullest, and sometimes that means pushing myself and taking risks, having new experiences, and figuring things out on my own.

My journey has been long and complicated, happy and sad, but mostly joyful and full of love, but it’s not over and I’m hoping that this year I will be able to turn a new leaf and have new experiences that people my age should have, so wish me luck, and thank you to everyone who is supporting me – especially my family and close friends <3

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

To Those Who Hold My Quality of Life in Their Hands

To Whom it May Concern,

My name is Rachel, I’m 22 years old and live in Virginia. I have an incredible family and two dogs who are the light of my life, and I’m currently living at home on a “break” from college. I’m a recently self discovered artist, I love painting and photography, and I also have a blog. I love working out and swimming both competitively and for fun, my favorite places being Smith Mountain Lake or swimming holes in the rivers, I was born to swim 🙂 I also love driving the back roads with my music and the wind in my hair, I’ve always wanted a convertible. I plan to have a beautiful wedding dress; in fact, if there’s no husband by 35years old, I plan to go try on dresses and wear one because I CAN. I want to travel. I want to live.

I’m Rachel, I’m 22 years old, and I’m a chronic pain patient.

I’ve been sick for six + years, and I have a myriad of chronic illnesses that leave me feeding tube and central line dependent for all “food” and fluids, and with severe nausea and crippling pain every day. There are many days when I struggle just to leave my bed and walk around the small upstairs floor of my home. I sometimes go weeks without leaving the house aside from appointments or my mom driving me to see a sunset or flood or snowy site. I’m often unable to paint or work on my blog due to the pain in my hands and arms becoming overwhelming… I often can’t look at my phone or computer due to my sensory overload and my migraines.

As much as we chronic illness patients love to say that “our illnesses don’t define” us, in reality, symptoms like severe, crippling pain can leave you unable to move, unable to walk, unable to accomplish the simplest of tasks, including self-care/hygiene without the help of a loved one or a caretaker. It causes “painsomnia” aka insomnia caused by severe pain, which in and of itself can be debilitating. The pure exhaustion from being in such high levels of pain can also take over your whole self, body and mind, it can be a scary time if you aren’t able to get relief even just for a couple of hours a day.

I often tell people that I feel like this is a life sentence for the innocent. I feel like sleeping beauty, stuck in her tower waiting for her prince, but I’m stuck in my room and there’s no end in site. I’m the sick girl in the middle of nowhere, but I’m lucky to have parents who work so hard for me.

this is a life sentence for the innocent

Do you have children? Grandchildren? Siblings? Can you imagine watching one of them have a quick yet long term deterioration of their health, and left with daily struggles and little to no relief? Because you’re not doctors or pharmacists so I have trouble understanding why you get to determine who gets these meds and how much we can have….If you aren’t a doctor and you aren’t a patient or someone who has experienced this first hand, what gives you the right?

Last month my pain management doctor and I decided to change my pain management plan after 6 months of consistency, in part to my body’s ability to build up tolerances to medications with lightning speed and in part to the new restrictions on pain medications. With my high, high tolerances and severe, daily chronic pain, it can be extremely difficult to treat, and sadly, it’s about to get harder. Due to the acts of those who abuse drugs, most of whom are not even chronic pain patients, this battle to manage chronic pain and improve quality of life is becoming nearly impossible for those of us on this side of the crisis – those of us who use our medications as prescribed and take them only to help us function on the bad days.

It shouldn’t be so hard to get medications that can improve your quality of life, I struggle so much with that thought, why would they take away these medications when they can help us make life livable?

I hope that the government and the insurance agencies will one day realize how ridiculous this all is, and that they’re stealing whatever potential that I or any other chronic illness patients like me have for relief and a more “normal” lifestyle, taking away the ability to pursue my dreams and my goals without the fear of my pain becoming too much. In this process they’re also taking a doctor’s ability to do their job to the fullest extent right out from under them as they are no longer able to treat patients to the fullest extent or in the way that is best fit for that patient.

There are so many things I want to do in my life. Like any 22 year old, I have goals and dreams and desires, but I also live a life most people my age don’t even know exists, a lifestyle that most can’t even phantom. Sometimes I can’t even imagine what I would do with myself if I were to make it back to society, but I know I’d quickly pick it back up and value every day, every moment, more than any healthy person could.

More on the restriction/ a great article https://www.statnews.com/2018/03/06/cms-rule-limits-opioid-prescriptions/

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:)