A Day in the Life of a Migraineur

A guest post by John Martinez with Axon Optics…

A day in the life of a migraineur is not a normal day. It’s like a day of playing dodgeball, but if you get hit, you have to call out of work and live with head-splitting pain. Migraine triggers can appear at any time, and the migraine can rear its ugly head on a moment’s notice. 

Living with migraines can sometimes feel like going on vacation, without any of the relaxation of going on a vacation. You need to check the weather, make sure you’ve packed everything you need, and always have a backup plan in case things go south. 

If you have a friend or family member that experiences migraines, this is worth a read. A day in the life of a migraineur revolves around migraines: avoiding them, treating them, and explaining them to others. 

Avoiding Migraine Triggers 

A day in the life of a migraineur often includes dodging triggers. The list of migraine triggers goes on as long as a migraine itself. Any of the following could also cause a head-splitting migraine:

  • Hormonal changes 
  • Changes in the weather
  • Stress 
  • Certain levels of physical activity
  • Strong smells
  • Bright lights
  • Loud music 
  • Dietary changes 
  • Caffeine or alcohol 

 

A day in the life of a migraineur may include turning down an invitation to happy hour, staying inside when they want to go outside, or trying to change an event to a more quiet and low-key location. All the while, the migraineur is attempting to stay calm, because too much stress may just bring on the migraine they are trying to avoid. 

Throughout the day, migraineurs may be recording their diet and activities in order to discover and control their triggers. Not all people with migraines are triggered by the same things – the process of pinpointing triggers and then avoiding them can take up an entire block of a migraineur’s day. 

What’s In A Migraineur’s Purse? 

It’s not always easy to dodge these triggers; how are you supposed to know when a change in barometric pressure is going to cause numbness and pain throughout your entire body?  

If migraineurs can’t avoid migraine triggers, they will have to treat migraine symptoms. This means carrying a bag with everything they need to deal with migraines. 

Medication 

Over-the-counter medications offer some of the quickest relief to migraines. It’s always good to have your painkiller of choice on hand when symptoms start to arise. Over the counter medications include Aleve/naproxen, Excedrin Migraine, ibuprofen, and Motrin migraine. 

For those of us who have severe, chronic migraines there are also prescription medications that you can take when you have a migraine coming on, imitrex being the most commonly used. There are quite a few options for daily medications and even some shots that are supposed to work for a month at a time, but these are new and not always covered by insurance, like any other med, they don’t work for everyone.

Hormonal medications may also help to regulate migraines – but this is not applicable to everyone. Female migraineurs should talk to their doctor about taking contraceptives or other hormonal medication if they have migraines. 

A Cold or Hot Compress 

This lifesaver can also provide relief in a pinch. Cold or hot compresses against the back of the neck or on the forehead can help to numb some of the excruciating pain of a migraine. Unfortunately, it won’t treat blurry vision or other types of numbness. 

Sunglasses

I recommend FL-41 Glasses specifically!

Migraine glasses, also known as FL-41 glasses, have begun to give a lot of migraineurs hope. These rose-tinted glasses have been crafted to block out rays that trigger photophobia (sensitivity to light.) They can be worn indoors or outdoors. Migraineurs who don’t enjoy wearing glasses can order FL-41 contact lenses.

If you have ever experienced photophobia, you probably get significant relief by wearing sunglasses indoors. However, research shows that over time, it can make your light sensitivity WORSE. Maybe too much of a good thing really can be bad? If you want more information on this, check out, “Why Wearing Sunglasses Inside is a Bad Idea”   by John Martinez at Axon Optics.

Caffeine – coffee, coke, etc.

Like hormonal medication, caffeine can either cause migraines or treat it. A small can of cold brew or a soda sometimes helps migraine patients, but this is not a widely successful trick and is definitely not a long term answer. 

The Dark

Sometimes nothing helps with a migraine and you are stuck laying in bed in the dark, wishing away the pain and nausea and whatever else comes along with your migraine, everyone has their own “aura” or mix of symptoms – light sensitivity and sound sensitivity are some of the most brutal triggers, so stepping out of your cave, trying to turn on a light to focus on a task, or even just looking at your iPad to Netflix your migraine away can cause a massive wave of killer discomforts of all kind.

Eye masks/sleep masks and ear plugs are your friend. Noise machines with peaceful background sounds like fans, white noise, rain, etc. can also help block out the more painful noises and give your brain something to focus on that ins’t “dangerous.”

Support

Most importantly, don’t fight alone, except when you’re mid-migraine and can’t stand even the smallest of noises.

Whether you find your support through religion, family or friends, your dog, or an inspirational playlist on your phone, it is important to have something that helps you stay positive and hopeful. There are also support networks on facebook and other social media sites that can make a big difference. Of course, having a supportive doctor is also very important, so keep that number in your wallet, too.

…But Don’t Take Our Word For It 

Every migraineur has a different experience. While some people feel like an ice pick is piercing their temple, other people experience numb fingers and blurry vision. (These are real quotes, by the way.) Some people may experience symptoms for mere minutes, others, for hours or even days.

Whatever it feels like, it doesn’t just feel like “a headache.” Lucky for most, you won’t ever have to feel this pain, but part of being a migraineur involves telling people that migraines are not just headaches, that they are serious, and that they need more awareness, more research, and more treatment options, much like any other chronic, misunderstood illness.

 

Guest blogger John Martinez, in association with Axon Optics, edited / posted by Positively Rachel as an awareness post for chronic migraines

Thank you, John for sharing with us, as always I am excited and grateful to have a guest blogger!

If you want to read more about migraines and how they affect daily life, you can check out my own work on a previous post, “Chronic Migraines: More Than Just a Headache” or “Kids Get Migraines, Too!”.

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.

 

Newbie Tubies turns TWO?!

In November we will hit our 2 year mark, I cannot believe it! We will also have sent out OVER THREE HUNDRED PACKAGES at that time! We have already had over 300 applications sent in and have filled at least 75% of those, how incredible is that? 

Unfortunately right now, Newbie Tubies has no remaining funds for shipping boxes or purchasing the extra items that aren’t donated, so in order to continue as we hope to, we need YOUR help to get there. 

We’ve had some incredibly generous donors who send us tubie pads, heating pads, supply bags, and other tubie products and we have shopping lists for amazon and etsy for easy online shopping as well as shopping guides for inexpensive items from target, walmart, & fabulous dollar store finds, but none of that covers the $14 shipping cost that each box costs, and I simply can’t afford to pay out of pocket for any more boxes.

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There are so many ways we can raise money, but I cannot do it alone! 

ALL of my artwork profits go towards shipping costs, so check out the shopping site as well as my facebook page to see the artwork that is available and supports this project! There are also vinyl bags, shirts, onesies, and decals that are made to support the project as well! I take commission for both paintings and vinyl so email me or message me if you have an order!

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True amazement and joy when the littles get a buddy, this single toy helps them feel confident and less “different” from others.

We hope to do a shirt fundraiser, so keep an eye out for that as well as for an upcoming raffle! Share our page and these posts so we can get as much attention as possible, every tiny bit helps.

If you are a recipient of a package share a post about what Newbie Tubies means to you, how it helped you and why it’s a cause to donate to. Hearing personal testimomy about what we do and why and first hand experience about the impact it makes can go far, so share that on your social media pages, email it to your doctors or family members and have them share it – let’s MAKE THIS HAPPEN TOGETHER! 

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My first package sent! Now I’ve sent over 20!
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A newbie tube with her matching, tube fed hedgehog!

I hate asking for monetary donations, but right now, I have to do so if I want to send out any more packages. If you have fundraising ideas or are interested in helping out in any way, I’m all ears. 

Thank you so much for reading, sharing, and helping in any way you can. We truly appreciate every one of you and you are making a difference for so many.

 

 

Information for donating and contact information:

Amazon wishlist: https://www.amazon.com/hz/wishlist/ls/1J7LHVRD4V3A6?ref_=wl_share

Paypal: rajinone@aol.com

Facebook: Newbie Tubie Care Packages // Positively Rachel

IG: newbietubies // positivelyrachels_art

Email: positivelyrachel101@gmail.com

 

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

 

Mindful Impact

Mindfulness. It is just amazing how big of an impact our thoughts can have on our bodies, on our ability to heal. It’s important that you fill your mind with optimistic or positive, healthy thoughts and your life with all of the things that have always brought you joy, all of your hobbies, and the people who put a smile on your face.

Today’s technologies allow for incredible connections; there is a huge online presence of “spoonies” (as we call ourselves) all over instagram and facebook, both individual pages and group pages! This resource is a HUGE gift to those of us who suffer from severe illnesses that leave us homebound or bed bound with little to no social interaction, but there are cons to this as well.

When you surround yourself with individuals who are sick, and you are sick and have been for a long time, it begins to feel normal. You start to forget what it feels like to be healthy, to be a functional, productive person. When you start to feel that way you know it’s time to reevaluate your perspective, remind yourself of what makes you feel like YOU. Not sick you, not healthy you, but YOU.

Be mindful, know your limits physically and mentally. Will all of these posts from other sick chicks –  some of them trending towards competitive over who is worse off, some who seem to thrive off of the attention from being sick – make you focus too much on the sickness? Does life revolve around illness? Because it doesn’t have to; no matter how sick you are, you are more than your illness.

There’s a lot more to mindfulness than this, but it’s a start. I encourage you all to focus not on your illnesses, not on symptoms and treatments and bad doctor visits, not of scary unknowns and dooming diagnoses, but on all of the aspects of your life that were there before illnesses, that exist independently from illness, that bring you simple pleasure, joy, distraction, love. Positivity. Light.

Mermaid Soul

When I close my eyes, I go to the peaceful, beautiful underwater world at the lake. It’s dark and mysterious, the lake floor just deep muck squishing between my toes as I push off to surface like a dolphin, emerging just to take a breath before going back down, being engulfed by the water. You can hear the motor of boats before you see them, it is a soft, rhythmic stutter that comes and goes with the small waves. I could swim like that all day, every day and never be tired of it.

And then I’m in the clear, pure water in the rivers I swam in as a child, always searching for treasures in the slippery rocks under my feet, daring to go a bit farther, a bit deeper, conquering the current, being one with the water. There’s moss beneath my feet, the rocks I hit with my knees, and the little pinchers of crayfish. I find the deepest part and disappear for as long as my lungs will let me, sometimes swimming away and seeing if my family noticed how long I was gone, if they worried at all, other times just sinking into the water and just being one with it, listening, feeling the cold water and the hot sun, washing my problems away, down the river they go, I am at peace.

Chlorine. Salt. Sweat. The pool, the water I spent so much time in, practicing my strokes, competing, loving and hating it at the same time. I always seemed to tire before others, my heart rate was always higher, and even when I took my inhaler, I couldn’t breathe, but still, it was my passion. Summer mornings diving into the cold, cold pool, a shocking wake up call for swim team practice, back and forth, often toe to finger close to the person before me, the person behind me. When swimming for fun, not practicing, I will disappear under the water, swimming without coming up to take a breath, going deeper and deeper, testing out my lungs, happy and at ease.

One day I’m going to be free of central lines and feeding tubes and I’m going back to the water. I’ll live on the lake, I’ll travel and see the incredible beauty of the underwater world through my own eyes, scuba diving, snorkeling, swimming with dolphins, maybe hippos too – just no snakes. ☺ I can’t wait to return to my life as a mermaid, feeling the water, seeing the beauty, feeling no pain, just peace and happiness, such simple things.

These memories are worth gold, they’re what I need to have faith and they inspire me to make my dreams come back to reality. A piece of my soul belongs in the water, the thought of return comforts me when I need an escape, being my happy place when I need to disappear, and gives me hope and drive to find my way through my trials and back to my underwater world.

When Life Gives You Limes

People often use the expression, “when life gives you lemons” when things aren’t going quite right, you’re likely familiar with the phrase? Well, humor me as I explain why I’d like to adapt the statement to, “when life gives you limes.”

In my opinion, lemons are tasty and you can do so much with them, many options being super simple! For example, of course you can make lemonade, then there is lemon cake, lemon bread, lemon cookies, pie, and more! I mean lemons are great for tea, detoxing, or simply put in your water. Lemons are just so handy, but limes? Limes are a little bit more complicated, they’re slightly more sour and although you can use them in drinks and recipes, it’s not quite as common, kind of like chronic illnesses – complex and uncommon.

That said, I have quite a few limes in my life. I’ve been diagnosed with over 10 chronic illnesses, a handful of which are seriously debilitating and progressive. I’ve had to take medical leave from the school of my dreams, now having watched my classmates graduate without me, and put my future goals on hold. Because of my symptoms– mostly nausea, pain, and fatigue– most days I am not even able to leave home and I spend majority of my time in my bed resting and sleeping.

I have new limes thrown at me every time a doctor gives me a new diagnosis, every time a treatment doesn’t work, and every time I wake up feeling worse than I did the day before. However, I’ve learned to take these limes and use them to help me find all of the gifts in life, all of the things that I am so thankful for. When you’re given challenges, sour moments, it really teaches you to be so much more thankful for every little moment or object that makes you feel joy.

Some of the sweet things in my life that regularly help me get through the sour moments include my dogs, Baxter & Dexter, my family, good music, and my online support network. There are also little gifts day to day like a 75 degree day, a special visitor or getting something in the mail, being able to take a walk, an Epsom salt bath, taking a drive and seeing pretty scenery, etc. Lots of small things bring me joy, and I am so appreciative of every happy moment I am given.

I’ve had a lot of curveball limes recently, broken tubes, line infections, flare ups of pain and nausea, exhaustion, and doctor troubles to name a few, but I’ve learned to put up walls that keep all of this from affecting me too much, only allowing through the smallest amounts of stress or worry possible – the last thing I need on top of my illness happenings? Extra limes.

Learning to filter out some of the extra stressors, even the smallest things you may hardly notice can make a big difference in the long run. Hold on to every happy moment, every simple pleasure, and let go of negative energy; hold no grudges, and never go to bed or leave your loved ones angry. Forgive, love, laugh, and remember not to waste precious time on trivial issues. When life gives you limes, take a moment to find your own sweet moments and happy thoughts, play your favorite song or cuddle with your dog, text your best friend or your mom, take time to express yourself, share your love and gratitude, spread the joy in random acts of kindness, random words of affection. Life is too short to be sour.

 

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.

The Gift of Normalcy

I had a fabulous childhood; I was loved unconditionally, I was supported by my parents in everything I did, and I never felt alone or scared or underappreciated, I always had everything I needed and 99% of the things I wanted 😉 My parents always encouraged me to try new things and find whatever it is that makes me happy.

I’d always been a small town girl, good student, decent athlete, volunteer, etc.; Well, I wanted to be more than just “normal,” more than just small town, so I thought going away for school or finding a job that could set me up for working outside of my hometown & granting me the (financial) freedom to live a lifestyle that I thought was important to me might be my answer.

Like most kids – at least I hope it is this way for most – I was always told I could do anything, be anything or anyone I wanted to be when I grew up, and I embraced that thought and always dreamt about what I wanted in years to come. At 3rd grade I wanted to be a writer, then a cook. In middle school it was a lawyer, then an FBI agent or a behavioral analyst like those on Criminal Minds, and finally, by college, I wanted to be a behavioral therapist focused on autism.

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Did I mention my gift for style?

After falling ill and having two severe “flare ups,” the second of which never passed, has guided me into a whole new set of goals for my lifestyle. Instead of searching for my door to an extraordinary life full of adventure and expensive brands of clothes or my dream car – red convertible incase you’re wondering – I want to focus on something so simple – I want to find my happy, I want to make the most of my NOW, and that’s not money or material, that’s my people, my dogs, my artwork, my small adventures just driving a mile to see the dam in different seasons or try to see the eagles nesting, the bears someone spotted down the road, or just the ice on the trees or the flooding over the bridges.

I went from planning every part of my future and searching for all things perfect to searching for all things normal.

I want to be able to enjoy all of the small things, I want to be able to say yes every time I’m invited to go out with my sisters, I want to be able to make new friends who I can say yes to when I’m invited out …

Hell, I’m not even asking to be able to eat or drink a coffee or a martini, I just wanna go.

 

Chronic illnesses leave you with so little control, losing your ability to make all of the small, simple decisions that most people don’t have to think twice about can be an incredibly difficult thing to adjust to!

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Part of this adjustment is that severe chronic illnesses require just about 24/7 care, as an adult, so alongside the control, you lose any and all modesty and privacy you had left. For an introvert like myself, that’s no easy feat to come to terms with. I’ve never liked being the center of attention, & being sick is not a super easy situation to deal with when you’re shy, I mean just having people ask me how I am all the time has been tough, it’s a balance of how much to share.

It’s a quick second to think through — who is asking, do I know them? Do they know my story or are they just asking b/c that’s how you greet people? Do they want a real answer or are they being polite?

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I started this blog to help update people on my own health, but also to spread awareness so that people know how to handle situations like this, and I hope it is helpful for other spoonies but also for care takers and loved ones who are looking for help and advice so feel confident in your ability to support your loved one during their journey.

I sometimes get an urge to do something that normal people my age should be doing, and sometimes it might be a push for me, maybe even a risk, but sometimes a girls gotta do what a girls gotta do.

These times are those in which I don’t need questioning, doubt, or guidance. I don’t need it and I don’t want it, I just want support, I want love, I want encouragement. I want you to be happy that I am doing something that will make me happy, and we can deal with the repercussions as we go 😉

So, what’s the greatest gift you can give me? The best way to talk to me, best way to treat me?

Treat me like you would treat anyone else.

I can’t speak for every spoonie/tubie personally, but I know that personally, but learning how quickly things can change, how abruptly you can lose the ability to do your favorite things, eat your favorite foods, go out and take advantage of your youth, or even just care for yourself you often reevaluate your perspective and priorities.

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When you hear my name, I don’t want you to think of “oh that poor sick girl,” or “oh what a shame, she was doing great things.” When you hear my name, I want you to think, Rachel, Rachel is going to do great things, Rachel is fun, Rachel is creative, and Rachel is making a difference for others. Rachel is sick, but Rachel is capable. I’m tube fed, IV saline dependent, and I use a wheelchair, but I am ABLE to be me. I have good days, I have motivation, I have goals, dreams, hope, and feelings. I’m just like you, but I have a whole different, deeper understanding a perspective.

I don’t need to do everything in the biggest, grandest way. I don’t need to make a ton of money or have the biggest group of friends. I don’t feel a need to stick out or be recognized as anything more than just being me. Being Rachel.

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