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 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