Medical Trauma: A Special Guest

Medical trauma and medical PTSD are two of the most under-identified and misunderstood occurrences in today’s medical system, even in our own developed, educated country. Doctors are supposed to be trustworthy and well intentioned, they even take a vow to do no harm. From day one we are taught to put trust in doctors, nurses, and any other medical professional, trust them with our personal thoughts, habits, and of course our bodies,  our minds; hospitals and doctors offices are supposed to be “safe zones” if we need help… but is this always the case?

From my years of battling chronic illnesses I’ve seen TONS of doctors, specialists, nurses, xray techs, med students, etc. and it’s shocking how some of them treat patients. I can give you handfuls of personal experience with negligence, betrayal, false accusations and biases, and personal traumatic experiences brought on by the medical systems, doctors and nurses themselves. I’ve gotten to a point where I have anxiety over  new doctors, a true fear of admissions to the hospitals who are said to be there for treatment, help, healing. I’ve been denied medical treatments by insurance agents who don’t even have a degree in medicine or pharmacology, but choose money over my quality of life. There’s so much more to the medical system than the average person imagines, and the impact reaches far beyond the exam table.

To share another perspective, I’ve been given permission to quote the testimony of one of the kindest, most respectful and compassionate fellow “spoonies” that I have gotten to know thanks to online networks that let us find one another with just a hashtag.

So, thank you Nicole, and here we go…

“Ever since I started struggling more and more with my medical trauma and also was recently officially diagnosed with medical PTSD so I wanted to spread awareness about how traumatic this chronic life can be. From doctors treating you badly, to traumatic surgeries or procedures to doctors not believing you to life threatening situations there are unfortunately many possible traumatic parts of being sick and/or disabled and it needs to be talked about more.

Vivid nightmares. Anxiety and panic attacks. Depression. Avoidance. Flashbacks and intrusive memories. Always on guard. Easily startled. Trouble experiencing positive emotions. Loss of interest in things that you enjoy. Trouble sleeping and concentrating. Irritability. Guilt.

These are just some of the things that come along with medical trauma or PTSD.

Unlike with some other types of trauma, for us who are complex chronically ill and/or disabled patients we literally cannot avoid our trauma.  We cannot avoid hospitals, doctors, medications, treatments, surgeries, etc. This makes coping with and healing from medical trauma very very challenging. For me even little things like doing my daily line and tube care can bring on flashbacks of sepsis hospitalizations and awake, painful IR procedures and things like new patient appointments can bring on severe anxiety about possibly not being believed. This can cause us to generalize all our trauma and have anxiety and PTSD symptoms around everything medical not just the traumatic event/s. For me I get awful anxiety when I have any kind of medical appointment due to the trauma being brought back through intrusive memories, feeling unsafe and a strong urge to run/get home ASAP, agitation, impatience, feeling like I may literally explode from anxiety and panic and much more.

All trauma, no matter what it is or how severe, is real, valid, important and is deserving of healing, therapy, support, treatment etc.

Medical Trauma and medical PTSD needs more awareness so doctors, nurses, medical professionals etc can be aware that it exists, that is a huge struggle for the patients that deal with it every single day, and learn how to help it and do everything they can to try to prevent it.

We have to strive to make healthcare *Human*Care so that medical trauma and PTSD stops for good and no one else ever has to go through such a horrific condition again! Maybe if medical professionals treated us as actual HUMANS – not just another medical case – many of these traumatic situations could be avoided.”

 

Quote by Nicole P // IG @itsapotsielifeforme

 

Positively Rachel

 

Adventures of Mummy & Her Little Tubie

I’m excited to share a post written by one of our Newbie Tubie Mamas who is the mama of a little tubie and agreed to share a bit of her journey with us! This is a great opportunity to read a bit about raising a tubie from the perspective of the mother…

“There were times I’d sit and wonder how the hell we were going to get through this, how can we live like this forever not being able to feed our baby who’s starving and also failing to thrive anyway so needs every bit of milk he can get.

Our little man is now 8 months and has all of his nutrition via a feeding tube. Some days your baby’s screaming for milk and you can’t feed him because you can’t get the right aspirate – this could take us hours. It does get easier I promise!

I’m very lucky my husband is amazing with our children. He’s definitely the more practical thinker and I go into full research mode and sit and think what if. I have managed to tone down the googling – my husband made me promise I’d only google it if the doctor had spoken about it or it was in one of his reports and that really does help. Your then looking at specific information rather than a whole load of case stories of children who have completely different medical histories. I do find that being prepared helps my mental health, but only if I’m preparing for the real thing, not something from google that ends up being way far off from what’s really going on.

It also helps that he’s a very hands on Dad so I know when I’m in hospital with our youngest that the others are safe and happy at home with their Dad who also manages to keep the house going while I’m away. They spend lots of time visiting us because at the moment they’d rather be with us at the hospital but when the time comes that they don’t want to do that anymore we will be respectful of this and put other plans in place.

Our children have been amazing, they find it really tough and it’s so important to remember that this isn’t easy on them, either. They’re young, but they see the complexity, they see when we are upset, they want to know, so we tell them what’s happening but also try and keep their lives as normal as you can. We try and make sure they get to all their clubs, they have friends for tea or we get them on days out as we would have done before.

Siblings are a great gift to our tubie, but we have to make sure that each child feels loved, appreciated, and individually important to us and to everyone. Each one makes a huge difference, is an inspiration, a source of strength and light and joy.

During feeds it can be difficult to pick your baby up without messing up the pump, kinking the tubing, or making your baby uncomfortable from the feeds, and as caretakers, moms especially, all you want to do is hold that sweet baby! There are often extra steps when doing these basic, instinctual habits, and when you’re a parents, that can be extremely frustrating and disheartening. Eventually, the medical supplies falling out of all of your closets and the tasks that come with tubes and chronic illnesses become part of your daily routines, it all just becomes second nature – scary thought, right?

It’s all about finding the right mindset, but you first have to almost grieve the life you thought you were going to have with your new baby. I cried for hours that I would loose that bond by holding him to feed him; I can assure you I was worrying over nothing our bond is stronger than ever! We still get plenty of cuddle time and when he’s feeding I’ll often sit next to his cot and hold his hand, play peekaboo or tickle him. There are lots of opportunities for bonding you just have to look for them.

I woke up one day and realized this was our life and we’ve got two choices we get on with it, build our little man up and hope one day he stops aspirating or we sit and sulk about it which gets you absolutely nowhere! Life doesn’t stop for a feeding tube, feeding tubes allow life to get going again, it allows children to BE children, it is just another way to feed your little one.”

-Hayley Smith

If you have any interest in guest posting, I’m always happy to share different perspectives and pieces from fellow writers 🙂 Email me/contact me through the blog if you want to talk about it 🙂

 

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

A Guest Post: Does My Illness Define Me?

This is a topic widely discussed within the chronic illness community. You’ll see people saying everywhere, “Don’t let your illness define you.”

You know what? No, my illness doesn’t define me, but it is ONE of the things that defines me. But just here is a list of other things that define me:

My favorite color.
My favorite TV show.
My favorite animal.
The thoughts that go through my mind before I go to sleep.
What causes I feel passionate about.
What I like to do in my spare time.
What kind of characteristics I’m drawn to in a friend.
The way I react to specific types of situations.
The little things that make me laugh.
How introverted or extroverted I am.
What situations I tend to shy away from.
How I treat strangers.
How I treat my friends.
My goals and aspirations.
What makes you grateful.
The people you love.

And then there’s the debate. Does my health status go on that list? I’m not sure it absolutely goes on that list. But I can tell you without a doubt that my chronic illness affects almost every single thing on that list. And yeah, that makes it a big part of me in the end.

For example, the things that make me grateful have changed since I became sick. I’m grateful now for things that I previously wouldn’t have even known to be grateful for because of my illness. I treat strangers differently now because you never know what they’re going through. I do activities in my spare time that my abilities allow me to do. I feel extremely passionate about raising awareness for these causes that I may never have even been aware of had I not gone through this.

A very wise woman named Kerri Sparling, who has Type 1 Diabetes, coined the quote “Diabetes doesn’t define me, but it helps explain me.” And to me, that’s an incredible way of saying it.

I think the phrase “Don’t let your illness define you” should change to “Don’t let your illness be the only thing that defines you.” Because it is inherently a part of us, even if we didn’t choose it. But each and every one of us have other things that explain who we are even better than our illness does. And sometimes I do like to choose to focus on that.

 

Blog post by Michelle Auerbach. For more from her, check out her blog at http://www.lovelightandinsulin.ca/?m=1

 

My Relationship With Chronic Pain

For the past few years, I’ve been very honest and open about my journey with Gastroparesis, it’s been one of the main chronic illness I talk about. So I decided to talk about another pretty major part of my life.

My relationship with chronic pain started when I was 12 years old. It was winter time, and I was doing a indoor winter conditioning camp for softball. During the camp, after a throw my right shoulder started hurting. Turned out, I tore my labrum pretty badly. So at age 13, my first surgery in was done in January and my surgeon cleared me for surgery that following season. I think I was cleared too soon to return to playing softball again because soon it was re-torn. I managed to play through the season, pushing through the awful pain I was eventually placed as a designated hitter. That was my very last season of softball, one of the biggest passions I’ve ever had.

Eventually I couldn’t handle the pain any more and hoped a second surgery at age 17 would fix my problem. But I was wrong. I remember the pain from that surgery being so extreme, I slept in a recliner for weeks. I’ve done so many hours of physical therapy for my shoulder, and it’s never really helped. Unfortunately the 2nd surgery was also unsuccessful.

During a follow up with my Orthopedic Surgeon, I decided to mention to him how I was also having pains in other joints. Hips, jaw, back, knee for the past 2 years. So he ran blood work, and sent me to a Rheumatologist. The doctor I saw, did some tests and gave me a diagnosis of ” fibromyalgia with hyper mobility” then handed me some brochure, and a handful of different medications. Unfortunately there weren’t very many in the area at the time so it was hard to find a good one. My body was so overwhelmed with all the different meds, all it did was make things worse. They upsetted my stomach, or made me extremely tired. So durning my Senior year of high school, was spent doing a lot of sleeping.

For a while I was able to manage, especially the pains in my shoulder. The other pains bothered me, but I was able to push through them. Lately, the chronic pain has been a struggle. I get muscle pains all over; my legs, arms, back. I have instability in my shoulder so it often feels like it’s not sitting in its right place. And at times that can be so painful it’s debatating. Some times it gets very frustrating, but I’ve learned to use certain coping skills when I know I need them. On bad days I’ll try to surround myself with things I like. I’ll listen to my favorite music, go and be outside, etc. 

Two different surgeons have told me a 3rd surgery probably wouldn’t help, so I’ve had to accept that in all likelihood this will be a part of my life, for the rest of my life. I know a lot of my friends can relate; they as well have painful illnesses that help them understand. It’s nice being a community that constantly amazes and inspires me. So, because of that, I guess my relationship with chronic pain will continue on as “it’s complicated.”

 

 

A great piece by one of my close friends and fellow chronic illness warriors, Sarah! Follow her blog at chronicallywandering.wordpress.com 🙂

A Glimpse at Inaccessibility From a First Time Wheelchair User

The other day I had my first experience using a wheelchair in public. Out of four and a half years of being chronically ill I’ve reserved wheelchair use to rolling in and out of the hospital, mostly out of pride. My illnesses limit me in so many ways, I didn’t want to allow it to take any other ability from me either. So instead of using a wheelchair as an aide when I was sick and weak, I powered through or sat on the sidelines. Recently, I decided letting life go by because I’m too stubborn to admit I need help is silly and I ventured out for a day of shopping with my girlfriend. I made it through the first few stores leaning on the shopping cart as support but by the end of the day it was clear I needed to use a wheelchair. I expected the stares from strangers but what I didn’t expect was the blatant inaccessibility “accessible” places are.

Because I was too weak, I required my girlfriend to push me. This tied up her hands and crossed out the option of a shopping cart or basket to carry our items. Suddenly I found lap full of various things we wanted to purchase. While this wasn’t a huge pain this time, it would’ve been a problem if we were buying more or heavier items. How can shops expect a wheelchair user to navigate with either a small basket attached to a motorized cart or no basket at all?

The second thing that was an issue was my sight line was cut in half making it impossible to see the higher selves and options on them. While shopping in one of my favorite stores, I found myself able to see only about half of what I normally experience while shopping. And forget trying to reach anything on a high self, it was hard enough to grab things from my sitting position in the wheelchair.

But by far the biggest problem we ran into (pun intended) was the fact that the aisles weren’t wide enough. I’m sure anyone will admit the aisles in stores are narrow and navigating it with a shopping cart is hard enough, but I never imagined how hard it would be to find my way in a wide wheelchair that wasn’t exactly fantastic at taking turns. We found ourselves bumping into corners and trying to wiggle our way out of the line of other shoppers trying to pass.

Until this recent experience, the inaccessibility of stores was never forefront in my mind. I knew my friends who use wheelchairs often encountered issues while shopping, I just never realized how frustrating and inconvenient it was. Making sure spaces are accessible is extremely important, but so is ensuring those spaces are truly accessible for all.

Blog by Carolanne Monteleone

You can find more by Carolanne @aheartforhumanity.wordpress.com