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.

Chronic Illness Dictionary

New to the spoonie life? Are you the patient or a loved one/caretaker/friend trying to support a spoonie? We have a lot of chronic illness “lingo” that can be confusing to the “real world,” so I decided to create this list to help get some of these out there and easy to find 🙂 This list contains many of the common words and acronyms you will come across  but I’m sure I’m missing something! If you have other words/acronyms I missed, comment and I’ll add them in! I plan to do so as things pop into my mind, as well 🙂

And off we go!

  1. “Spoonie”- chronic illness patient; a term based on @TheSpoonTheory that aims to explain the level of fatigue we face as well as what simple, daily tasks can take so much energy from a “spoonie.”
  2. “Tubie” – a term used in the chronic illness world to talk about individuals who are tube fed; not an insult, we use it about ourselves and one another all the time.
  3. “Stoma” – the tube site, the area on your outer abdomen where the tube enters, and is used to keep it clean and comfortable as much as possible.
  4. “Feeds” – formula that goes through the feeding tube to sustain and nourish patients; “Time for feeds” is like “Time for supper!” except a lot less fun.
  5. Tubie Pads: similar to gauze but much cuter, used to help keep the tube site clean, healthy, and CUTE 😉

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Tubie pads donated by some of our VIP donors : @newbietubies @turkeytotcustoms @HomemadeTubieHappiness @DorkyLittleEtsyStore

  1. “Vent” – if you have a feeding tube that is in your stomach (gtube/gjtube/NG tube) you can “vent” it if you are nauseous or have air stuck in your gut (which doesn’t move). It is often done with a drain bag for gravity or a syringe for suction, which requires more caution – ick!
  2. A cental line ( hickman or port, picc line) – essentially a long term IV that is placed into a large blood vessel near the center of the body most often through your chest and ending at the heart; used for IV treatments like chemo or IVIG, TPN, medications, IV hydration, etc.
  3. Brain fog – cognitive dysfunction that comes with conditions like dysautonomia, ehlers danlos syndrome, fibromyalgia, etc. and causes severe problems with word finding, on the spot thought processing, short term memory problems and sometimes long term as well, lack of mental clarity and trouble holding conversations, etc. // People often say they feel that way too, that it’s normal when you’re tired, it happens as you age, etc., but if you felt the fog we feel as patients, you’d be very glad your fog is not what we experience.
  4. Motility (GI) – movement of the digestive system and its ability to move anything in there along with it throughout the GI tract. When there isn’t proper movement, undesirable symptoms can come up and you can be at risk for conditions like gastroparesis. Gastroenterologists who specialize in these conditions are called “motility specialists.”
  5. Flip/flipped – if you have a GJ tube  you can experience a “flipped” tube, this is when the j-arm comes up from the intestine and into the stomach, where it doesn’t belong. To fix this you have to have it rewired in IR.
  6. Tubie Friend” – a stuffed animal or a doll with medical devices to match your own, so feeding tubes, central lines, oxygen mask, etc.; these are incredibly comforting and meaningful for all ages.
  7. “Button tube” – low profile feeding tubes have an extension that can be removed, leaving only the “button” when you’re not using it! The other surgical tubes don’t have that option, and we usually call them “dangler” tubes or catheter tubes.26610760_10211000346221389_75216378_o.jpg

13. “leaker” – individuals with cerebrospinal fluid leaks

14. Zebra – a zebra is representative of rare diseases, sometimes patients refer to themselves and others with such conditions as zebras themselves

Acronyms you may come across:

NTCP: Newbie Tubie Care Packages

NP: Nurse Practitioner

PCP: Primary Care Physician

GP: Gastroparesis

EDS: Ehlers Danols Syndrome

POTS: Postural Orthostatic Tachycardia Syndrome; a type of Dysautonomia

MCAS: Mast Cell Activation Syndrome

NPO: nothing by mouth, long term or short term, often just 24hrs/overnight before surgery or certain procedures such as tube replacements, or even for fasting blood work

TPN: total parenteral nutrition, nourishment coming straight from an IV bag into your central line in order to stay nourished; can be short term or long term and is used as a last resort for dysmotility/gastroparesis patients who can no longer tolerate oral intake or feeds into the jejunum.

 

Types of Tubes:

GJTube: through your stomach and into the intestines; has access to both stomch and intestines

Jtube: a feeding tube that enters straight into the intestine; most complex and serious surgery out of the 3 surgical options, mostly used for those of us with severe dysmotility not just in the stomach, but also through the lower GI tract – small and large intestines/colon/etc. – and hence cannot keep the j-arm of a GJ tube “down” due to the lack of movement/pull.

Gtube: a tube through the abdomen and into the stomach directly, no lower access

NJ/NG: tubes going through the nose instead of the gut; usually used for short-terTm help for babies, individuals hospitalized, etc. or trials for feeds before surgery for G/J/GJ surgery.

 

*If you have any suggestions for words/phrases I should add, let me know- I’m always happy to have opinions from others 🙂 *

xoxo

Rachel

 

 

 

 

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:)

 

 

The Importance of Self Care: 8 Ways to Pamper a Spoonie

Being chronically ill really takes its toll on both your body and your mind. So much about your life changes when you get sick and you lose control over so many aspects of your life, it can be an exhausting adjustment.

A lot of people think that being this sick just entails a lot of netflixing, hot baths, naps, and comfort foods. Although for some people, those things are a part of being sick, there is a lot more to it than that. Being chronically ill means sleeping endlessly and still not being able to keep your eyes open, counting down the minutes until your next dose of pain or nausea medication, being unable to shower because of orthostatic and heat intolerances, having to have other people brush and braid your hair, and all sorts of other fun things! (catch the sarcasm?)

That said, it’s really important that individuals with chronic illnesses take time to do things that bring them joy or make them feel good. Whether its self care, comfort items, fashion, etc. I’ve compiled a list of some of the most common “feel good” options to keep in mind if you’re a spoonie (click for definition of spoonie 🙂 ) looking for a pick-me-up or if you’re someone else looking for a gift for a spoonie 🙂

  1. Manicure & Pedicure

My personal favorite way to pamper/spoil myself is to have my nails done! It’s a small thing, but it helps me feel a little more put together/fashionable even when I’m in my pjs all day 🙂

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  1. Hair – washed, cut, styled

It can be extremely difficult for many spoonies to wash their hair due to either orthostatic intolerances, heat intolerances, extreme fatigue, or having central lines that can’t get wet. Some girls really like going to a stylist to have their hair washed once a week and having it cut and styled every now and then is nice too!

  1. Bath package – salts, bubbles, oils

Baths can be both relaxing and pain relieving for many individuals with chronic pain. Essential oils and epsom bath salts are great for pain and bubbles are just fun!

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  1. Flowers

Who doesn’t love flowers? As long as there’s no major allergy, flowers are a great pick-me-up. Especially if they’re a surprise!

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  1. Makeup

A lot of girls do their makeup every day, even if they don’t go anywhere. It just helps them feel like a “real person,” less sickly looking. My mom used to say that if you dressed up and looked nice, you’d feel good, too. Sometimes I think it’s true 🙂

  1. Cute PJs

When you spend a lot of time bed bound or homebound, it’s nice to have some cute, comfy PJ options. Being able to change into fresh PJs is refreshing—even if they are just PJs 🙂

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  1. Lotion, Body Spray, Body Wash Package

Every girl wants to smell good, right? Again, watch for allergies, but this is another good option for a gift!

  1. Fuzzy, warm everything!

Blankets, socks, cute leggings; comforting, warm, good for appointments and car rides—great fall/winter comforts.

 

There are plenty of other ways people like to treat themselves or care for themselves, but these are a few from the top of the list!

Whether you’re sick or healthy, it’s important to care for yourself and treat yourself every now and then.

 

Kids Get Migraines, Too!

When I was young I suffered from headaches and abdominal pain that was left unexplained for a long time. For awhile it was labeled as “growing pains” or blamed on being too tired or anxious. However, being a 10 year old with daily headaches and regular pain in my abdomen was probably a little bit off, looking back on it. Now I’m an adult and I’ve been diagnosed with an armload of chronic illnesses that explain those symptoms, but I know there are a lot of other little kids out there who are probably going through the same thing that I did, searching for answers and validation.

Almost 5% of school age children suffer from migraines during their youth. The onset for migraine headaches in children is 7-10 years old. If your kids are complaining of headaches, nausea, light sensitivity, sound sensitivity, or any other symptoms that seem off to you, take them seriously. Take them to a good doctor who will really listen to them. Their complaints could be serious, even though they’re just kids. What can be comforting for parents (and children!) about migraines in children is that kids who have migraines in childhood usually grow out of them after puberty or in early adulthood and may not experience them again.

The stomach pain I complained of as a kid turned out to be something called an abdominal migraine. Most people have never even heard of this type of migraine! Abdominal migraines are actually seen mostly in children, typically children around ages 5-9, but they can be present at any age. The main symptoms of abdominal migraines are pain that stems from the belly button or midline area outward, nausea, loss of appetite, and can include a headache. Symptoms can last anywhere from an hour or two to a few days at a time and can easily be confused with other

Abdominal migraines, similar to migraine headaches, can only be diagnosed clinically. There is no blood test or imaging that can show these. First you rule out any other condition that could cause these symptoms, you talk about family history to see if anyone else suffers from migraines, and then you go over symptoms and the doctor determines what the best treatment plan would be. It can be extremely difficult to control both abdominal migraines and migraine headaches; there are very limited medication options for children and the adult medications and treatments are also very hit or miss.

As someone who lives with chronic daily migraines as well as abdominal migraines, I can tell you just how debilitating they can be. No child should have to experience such pain and discomfort. I hope that with continued awareness and research we will come up with many treatment options and then a cure (or maybe the cure will come first!) for migraines in both children and adults.

Keep in mind for your own children as well as for any child you may work with or spend time around, kids can have migraines, too. Children can experience most of the same pains that adults can, so we have to hear them out when they’re telling us they are experiencing consistent discomfort.

 

 

 

If you are a parent, a grandparent, a teacher, or just someone interested in learning more about migraines in children, please check out the link below for more information about signs/symptoms and different types of headaches to look out for in children.

Migraines are so much more than just a headache. Be thankful for every pain-free day you have and take full advantage of your healthy self; every day is a gift.

 

 

 

 

 

There’s a link below to a helpful website for those who want to know more about childhood headaches,  signs/symptoms, and possible treatments.

 

Thank you to the Diamond Headache Clinic for providing these facts.

 

 

 

https://www.diamondheadache.com/