Health, Unveiling Invisible Illnesses

How To Be There For Someone With Chronic Illnesses

    • Don’t ask an open ended question in regards to helping out. An example is asking someone if there is anything you can do to help; this is too broad of an offer. Though it is very kind, most likely the person you offered help to will feel too embarrassed to think of a specific thing. Instead, offer specific help, such as a house cleaning or dropping off dinner on an assigned night. Not only is this assistance incredibly helpful, but you also surpassed the uneasy ice breaker. No one knows what scope of help you are willing to give, nor do they want to feel like they might be asking too much. So, if you truly want your assistance redeemed then don’t give them the option to think and ask… just tell them when and how.
      Let them vent. You don’t have to have any answers or advice, just listen. We are used to small talk and the autopilot response, “I am fine, and you?” Advice is usually not something we are looking for unless we ask. It is likely we are very familiar with our health and have been living with chronic illnesses for some time. We tend to research, educate and advocate for our health. However, if we don’t feel like talking about it then just being present and distracting us from our health is a nice break. But when we do want to open up and vent about our health, just listen.
      We are not lazy. “It must be nice to be in bed all day,” is going to get you the asshole award. Trust me, we would rather have a life or be out at the beach, out with friends or working on a fun project, but instead we are prisoners to our own body. Be mindful that spending the day in bed is not as glorious as it sounds for a chronically ill person… that means it was a rough day.
      “You don’t look sick,” or “you are too young and healthy to be sick,” is something that we hear often and it only shows ignorance and a lack of empathy. Invisible illnesses are not obvious or blatantly apparent and because of this, we are often dismissed by medical professionals or deemed drug seekers. When you say that, it feels like betrayal and a reminder that no one understands. We may post our good day selfies or fun outing but what you don’t see is the 24/7 pain, depression and grieving, the tears, the complications and multiple doctors visits. You see a mask, warrior paint and the fake normal version of ourselves. We just hide it well.
      Gift suggestions: If we are in the hospital or recovering from a surgery, here are many little gift suggestions. After being asked by a friend what to bring to a hospital visit, I came up with some awesome go-to items: face wipes, lip balm, books, magazines, fuzzy blanket, essential oils, snacks, headphones or anything from my Amazon Spoonie List or Wildling Apothecary.
      Patience. We feel guilt and a whirlwind of emotions for having a chronic illnesses and for anyone who is involved. Your patience and support means the world to us, even if we have a hard time showing it. Don’t be afraid to point out our flaws but please try to be understanding and forgiving, as sometimes we don’t realize our suffering is showing in ways that can affect you, like an attitude or resting bitch face. Just tell us it’s okay and help is through instead of getting mad and angry.
      The Spoon Theory. We have a name that we call ourselves: spoonies. There is a spoon theory. In a nut shell, we have about twelve spoons per day. Each spoon represents our energy. Taking a shower might cost 2 spoons and cleaning our bathroom is about 5 spoons. Running errands and a doctors appointment takes about 5 more spoons. Then we are out of spoons that day, meaning we are tapped out and exhausted. Sometimes we even have to borrow spoons from the following day, leaving us bed bound. Many of us are trying to stretch our spoons out through the day, so when we cancel last minute, try not to get upset. Chances are we are pretty bummed about it but ran out of spoons. We still love being invited though!

    Thank you for caring enough to read this.

    Health, Unveiling Invisible Illnesses

    Unveiling Invisible Illnesses with Natalie Rose – Lupus

    Natalie is a very goal-oriented, adventure-seeking, well poised young woman. She also has that laid-back but tough vibe. An invisible illness is an illness that is not apparent or obvious. Looking at Natalie, you would see many other qualities about her and never jump to an illness. However, she has Lupus.

    Lupus is an autoimmune disease that causes fevers, joint pain, fatigue, rashes, mouth ulcers, hair loss, sensitivity to the sun, pain and a wide range of various symptoms caused by your immune system attacking your healthy cells. Lupus comes in flares. It also must be managed and under control or it can be very scary and complicated, especially if your flare consists of a vital organ.

    As you can imagine, Lupus is hard to diagnose with so many symptoms. When you are not currently experiencing a flare, your blood work levels can look normal at that time. Getting in with specialists can take a long time as well. This also makes it complicated for diagnosis. There are twelve million misdiagnosis per year. Natalie shares her story in hopes of raising awareness and helping others in the same boat.

    What is your official diagnosis and when were you diagnosed?

    Systemic Lupus Erythematosus (SLE). I was diagnosed about 2 ½ years ago with Discoid Lupus, but my doctor warned me that SLE was still a possibility. About a year after that, a flare up landed me in the ICU; after seeing several different doctors, I was diagnosed with SLE.

    Looking back, how long where you having symptoms before you got diagnosed?

    At least a year or two. I had skin legions on my head and every doctor I saw diagnosed it as a fungus. After being on serious systemic fungal medications and seeing no change, I finally found a dermatologist who biopsied and diagnosed my legions. I always dismissed the joint pain as a side effect of being in the service industry for so long, but it turns out that my immune system was attacking my joints. I thought it was normal for people to be exhausted all the time, turns out it’s a symptom called “chronic fatigue.”

    What do you do to keep your symptoms managed?

    The most important thing that I had to learn was stress management. I quit the job that I hated. I’ve ended several relationships that caused me more stress than happiness. I learned how to either avoid stressful situations or take them in stride, rather than let them consume me. I wear sunscreen every day and do my best to cover up when I’m in the sun. One of the symptoms of lupus is being extremely photosensitive. Not only do I burn very easily, but it contributes to my other symptoms. A day in the sun usually means a few days of chronic fatigue and worse than usual joint pain. I try to get appropriate rest. Sometimes I have to bail on something I really wanted to do so I don’t push myself too hard and end up sick. It’s all about knowing your body and understanding your flare ups.

    What advice could you offer to someone who is currently struggling with the same illness?

    Keep a diary of symptoms so you can understand what leads to flare ups in order to try to prevent them. Don’t push yourself when you’re not feeling well, and certainly don’t let anyone make you feel bad for taking care of yourself first. Don’t let it hold you back though. I still enjoy all my outdoor hobbies, I just cover up and wear sunscreen. I’m still a career woman in a stressful field, I just manage my stress well. Most importantly, I would say not to waste time with people who are dismissive of your disease.

    What is the scariest moment you have experienced because of your illness?

    The time I ended up in the ICU. I woke up with a sore throat, and 10 hours later I couldn’t swallow, and was having trouble breathing. I had a simple cold but my immune system attacked my lymph nodes. I spent 3 days in the hospital on a high dose of steroids. I couldn’t eat or drink for a few days, and still had trouble for a while after that. While in the hospital I saw multiple hospitalists, my personal physician, an ENT doctor, a rheumatologist, and even an infectious disease doctor. They ran every test imaginable and just came back with the response, “looks like it was lupus”. It was by far the most painful and frightening experience of my life. Every time I get sick I worry if I’ll end up in that same situation again, or worse.

    How do people react when they discover you have an invisible illness and how does that make you feel?

    Most people don’t know what Lupus is, or they have some hazy image in their mind from episodes of House. For the most part, people are dismissive or just don’t understand. I think because you look happy, healthy, and young, they just assume that it’s not a big deal or not real. People often tell me that they’re “sorry.” I don’t want anyone to feel sorry for me. My life is pretty great, I just have an autoimmune disease that I have to live with. It’s really disappointing when people are dismissive of my symptoms. I don’t like or need anyone’s sympathy, but sometimes I would like to be able to rant about how terrible I feel without feeling judged or trivialized. I don’t like being held back by anything, so I get rather upset when a flare up causes me to call out of work, or bail on something that I want to do. It helps to be able to talk about it sometimes.

    What way can others show support to someone with an invisible illness?

    Just listen to us and try to be understanding. We know how to take care of ourselves, but sometimes it’s frustrating and overwhelming and we need a shoulder to cry on. If you’re in a relationship with someone who struggles with an invisible illness you should read up about it and be there for them as best you can. Don’t downplay or ignore their symptoms. Personally, I feel like laughter is the best medicine. My friends will make jokes about me being a vampire or how I need to start carrying a parasol. I much prefer that over someone telling me how sorry they are or being treated like I’m fragile.

    Favorite quote:

    When the going gets weird, the weird turn pro. -Hunter S. Thompson

    Three things you can’t live without:

    Great food, great friends, and my dog.

    What are your goals? Where do you see yourself in five years?

    Haha, I have a ton of goals! Anyone that knows me would describe me as very goal oriented. My goals are a little different than most because I’m not going to have children. In five years, I want to own my own home somewhere close to the water. Preferably on a creek somewhere in Melbourne. I plan on being very successful in my career. I’m working on getting in shape, so in five years I plan to be on a great work-out routine and to be healthy and fit. I just recently completed my dive certification which was one of my goals. Now I want to have all the certifications I need to be able to dive wrecks and caves. I plan to be travelling a lot and exploring beautiful new places as much as work will allow.

    *Photos taken at Traditionals Cuts, Shaves and Brews in Eau Gallie Arts District (Melbourne, Florida) by Misti Blu

    Unveiling Invisible Illnesses

    Unveiling Invisible Illnesses Documentary

    Unveiling Invisible Illnesses – Documentary

    First interview down!

    I am looking for more volunteers to share their story on struggles with invisible illnesses, misdiagnosis, medical negligence, rare diseases or anyone in the medical field or a loved one who wants to share their side.

    mistibludream@gmail.com

    @mistibluday

    Health, mental health

    What Are You Thankful For?

    Throughout my life, I have struggled with depression. Actually, I am lying. I am underplaying it; I have struggled deeply my entire life with depression. I never felt like I was enough. I never felt worthy. I was born with serious health issues and minimal care due to negligent doctors and lack of insurance. I chose the wrong people to enter relationships with because I had no self worth so my standards were nonexistent. I sabotaged relationships as well because I felt like I was doing them a favor. I let friends take advantage of me because I was happy just to have friends. Twice, I had to get expired food out of a pantry and I mastered making meals out of what was left in the cupboard. I cursed the universe because life was not fair. I have bottled childhood trauma up and carried it with me throughout my life.

    I am grateful that one day I decided to wake up and appreciate what was good in my life instead of numbing my pain and feeling like a failure. I cut out toxic people in my life and raised my standards on what I expected out of a relationship. I stopped letting negativity consume me and tried being positive for once. I took my health into my own hands and advocated for myself and educated myself. I stopped eating like shit and corrected imbalances and deficiencies and taking care of myself and my body. (Also, huge props to correcting my MTHFR mutation which really was a significant part of depression for me).

    I am now in the most loving, abundant and stable relationship I have ever been in and my heart is full of love and happiness. I don’t feel worthless and I know I am a good mother and if anyone tries to change how I feel about myself, they will fail miserably. I am strong, determined and passionate. I am thankful that I never gave up. I almost did, many times. I am grateful that I pulled myself out of the dark and loved myself. I never would have known this beautiful life I have now. I don’t know who needed to read this but I felt a strong urge to share this. Never give up! You never know what is around the corner for you. You are worth the love you give everyone else and everything is going to be okay.

    Health

    Healing Sprinkles

    Food is medicine! We are destined to age, but why not do it well? This blend of herbs and spices have been around for a long time. The selected blend has many anti-cancer, anti-inflammatory and anti-diabetic properties that also reduce risks for heart disease and brain diseases. Antioxidants, fiber, minerals and vitamins also encompassed in this healing mix.

    Sprinkle it on your cereal, oatmeal, toast, or mix it into your smoothie blend. Add it to your desserts, muffins, brownies and baked goods. Top in on sweet potatoes, coffee or fresh fruit. This is an easy way to maximize your health and get natural plant-based benefits.

    Shop

    Carob

    • Rich in calcium
    • High in fiber and protein
    • Diarrhea relief
    • Antioxidants
    • Caffeine free
    • Tastes like chocolate
    • Excellent source of vitamins and minerals

    Maca

    • Increases stamina
    • Balances deficiencies
    • Supports fertility
    • Balance hormones for both men and women
    • Immune support and circulation
    • 19 essential amino acids
    • Rich in vitamins and minerals
    • Alleviates Chronic Fatigue
    • Reduces signs of aging
    • Enhances memory

    Cinnamon

    • Loaded with antioxidants
    • Anti-inflammatory properties
    • Reduces risk of heart disease
    • Great for diabetics
    • Reduces high cholesterol, lowers lipids
    • Helps metabolism
    • Protects neurons and brain health
    • Anti-microbial and anti-cancer

    Turmeric

    • Antioxidants and anti-inflammatory
    • Used in medicine for thousands of years
    • Improves brain function and reduces risk of brain degenerative diseases
    • Lowers risk of heart disease
    • Can help prevent cancer
    • Helps with arthritis and pain
    • Helps with depression
    • Anti-aging

    Ashwagandha Root

    • Ancient medicinal herb
    • Anti-cancer properties
    • Reduces cortisol level
    • Reduce stress, depression and anxiety
    • Improve muscle mass and strength
    • May reduce inflammation and lower cholesterol

    Lemon Balm

    • Eases stress and anxiety
    • Great for heartburn and indigestion, cold sores, insomnia and high cholesterol
    • Excellent use for brain health
    • Calming

    Nutmeg

    • Relieves pain
    • Soothes indigestion
    • Improve skin quality
    • Reduce insomnia
    • Support immune health
    • Improve cognitive function
    • Improves circulation

    Ginger

    • Anti-inflammatory
    • Anti-nausea
    • Antioxidants
    • Reduces muscle pain and soreness
    • Helps with joint health
    • Reduce heart disease
    • Helps with indigestion
    • Reduce menstrual pain
    • Lower cholesterol
    • Anti-cancer properties
    • Improves brain function

    *Please consult with your doctor before adding spices into your diet if you are on certain medications

    Health, Healthy Food, Sweet Tooth

    Sugar – The Silent Killer and a Low Glycemic List of Foods Best For You

    Our blood sugar or glucose levels should be in the 74-100 range. Glucose enters the bloodstream then to your cells. Our pancreas produces a hormone called insulin, which regulates the metabolism of carbohydrates, fats and protein. Chronic high glucose levels will create issues with your insulin levels.

    Having high levels of blood sugar on a constant basis can damage your blood vessels, leading to atherosclerosis (the hardening of your blood vessels). In time, this can create the perfect environment for heart disease due to the damage of long term elevated glucose. Sugar can increase the risk of stroke or heart attacks due to ischemia, or lack of blood flow to an organ, just as bad as cholesterol and high blood pressure. Besides heart disease and stroke, the narrowing or hardening of blood vessels can also compromise other organs and cause issues such as kidney disease, erectile disfunction, vision issues, poor circulation, nerve damage, slow wound healing and a weakened immune system.

    You can run around the gym and count calories all day, but what you put into your body DOES matter. Justifying your workout so that you can eat processed foods with high sugar content or artificial ingredients will not work long term. You may feel fine now and slim down but as you age, these issues will catch up to you.

    Foods to avoid:

    • White potatoes
    • White rice
    • White bread
    • Sugar
    • Sports and energy drinks
    • Soda
    • Yogurt with sugar*
    • BBQ sauce*
    • Ketchup*
    • Marinara sauce*
    • Granola*
    • Flavored coffees
    • Sweet tea
    • Protein bars and cereal bars*
    • Canned fruit
    • Bottled or premade smoothies
    • Breakfast cereals*
    • Cocktail mixers

    *Check the labels! These can still be good as long as they do not have a high sugar content.

    Best option, low glycemic:

    • Green vegetables
    • Sugar-free yogurt
    • Raw carrots
    • Berries
    • Kidney beans
    • Chickpea
    • Lentils
    • Nuts
    • Sweet potato
    • Peas
    • Quinoa
    • Watermelon
    • Artichokes
    • Grapefruit
    • Peaches
    • Oranges
    • Grapes
    • Plums
    • Apples
    • Squash
    • Broccoli
    • Tomatoes
    • Corn tortillas

    Maple syrup and local honey are great natural sweeteners and substitutes for sugar. Artificial sweeteners and even many natural sweeteners like Stevia are still very processed to the point of losing all natural value. Remember to read the labels and sugar content. We sometimes see products that are marketed as healthy as assume they are okay, but are often loaded with sugar.

    Every day is a new day. Every hour is a new chance to start over. Many of us mess up and fall off the track, then stay there. Pick yourself back up, and start over. You are worth it. Your future self with thank you.

    We are creatures of habit and you will change your habits and lifestyle if you stick to it. Prevent disease and future health issues by eating clean and keeping your body in balance.

    Health

    The Responsibility That Comes with Artificial Intelligence in Healthcare

    We live in a progressive world where modern technology and artificial intelligence are profoundly innovative and advanced. Because or these technological advancements, there have been substantial high-tech solutions in diagnosing, monitoring and treating an array of medical conditions. Though our high tech innovations have made an impact in the healthcare industry in many ways, there are also consequences that may come with these sophisticated advances. It is important to find the right balance between machine and human skills in the medical field. Artificial intelligence may make advances in medical technology; however, there will always be a downside and we should never solely depend on AI, as it comes with great responsibility.

    Having a robotic surgical system requires an abundance of special training and offers a minimally invasive approach to surgery. The da Vinci Surgery has been used on over three million patients throughout the world, providing the option for minimally invasive procedures in which a surgeon can offer a robot-assisted surgery by controlling a device that operates on their patient (da Vinci). The da Vinci reduces the recovery time, minimizes the patient’s hospital stay and reduces blood loss. The nine-week training requirement for surgeons to use the da Vinci has been dropped and one cardiac surgeon states that he did not feel fully comfortable until he performed 200-300 surgeries (The Bleeding Edge). Can you imagine being one of the first few cases? Because the medical device industry is so profitable and easy to get approved through the FDA, many devices have been approved under the 501(k) and were able to surpass clinical trials and the patients are left to discover the side effects and complications (The Bleeding Edge)Sure, innovation and the vast improvements of medical technology have been known to greatly improve the medical world, but lives should not be at stake in the process of this growing billion-dollar industry.  

    Too much dependency on artificial intelligence could have negative consequences in the medical field. Disasters can be natural and range from fires, earthquakes, storms or floods, or a disaster can also be man-made, such as a terrorist attack. During a natural disaster, modern technology or computers relying on Internet and electricity may not be available. A doctor or healthcare provider may depend on devices to care for their patients and not be prepared in an instance in which those devices are not readily available. In the example of a war zone or large-scale trauma, there may not be high tech devices in range or enough to help everyone (Pourhosseini et al.). Ensuring that modern technology is not our sole focus is important in understanding the basic foundation of medicine, so that patients can be treated in any scenario. There are various aspects of healthcare services that require management, including the mental health of victims, which can not be assessed by a device. Psychological support needs to be provided by a team of specialists to evaluate victims of disaster (Pourhosseini et al.). 

    Healthcare technology, just like human error, can also contribute to medical mistakes (Siwicki). Though medical technology is designed to reduce errors in healthcare, there are still occasional unforeseen types or errors that can occur (Agrawal). Relying on computers to calculate the correct dose is a way to prevent medication errors (Agrawal). What happens when a medical staff depends on artificial intelligence rather than exercising their education? Proper training is crucial in working with artificial intelligence to reduce the likeliness of errors (Fasig). Documenting and reporting errors will help reduce mishaps long-term. Creating a system to avoid mishaps and minimizing possible risks by thoroughly investigating and researching new medical devices can help prevent errors  (Siwicki)The third leading cause of death in the United States are a result of preventable adverse events in the medical field, which often happen when new technology is introduced without proper training (Fasig).Medical errors should be more transparent and available for patients and doctors to be aware of, for the sake of education and safety. New innovations are unproven until time exposes thefaults a device may or may not have. Typically, surgeons and patients are not well versed or educated on the process of approval for medical devices through the FDA (The Bleeding Edge). 

    Doctors willing to provide computer-assisted surgeries should be required to a more in-depth training process to use these advanced medical devices (The Bleeding Edge) Healthcare providers should understand and know the importance of leaning on the basic foundation of healthcare rather than solely focusing on technological advancements. Proper training in computer systems is crucial in avoiding medical mishaps (Siwicki). Stricter guidelines and regulations of device approval through the FDA could help minimize risks. Cutting corners in healthcare, with the use of artificial intelligence, should be done with caution due to the risks involved.  Computers do not come with doctor-patient intimacy or weed out rare patient circumstances that do not adhere to standard textbook  criteria. Simply put, safety should be the number one priority in healthcare, rather than profit.

     by Misti Blu Day McDermott

    Works Cited

    Agrawal, Abha. “Medication Errors: Prevention Using Information Technology Systems.” British Journal of Clinical Pharmacology, 2009. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2723209/ 

    The Bleeding Edge. Directed and produced by Kirby Dick, 2018. Netflix. http://bleedingedgedoc.com 

    “da Vinci Surgery: Minimally Invasive Surgery.” Intuitive Surgical, Inc., 2018. http://www.davincisurgery.com

    Fasig, Jimmy. “New Medical Technology Can Lead to Errors that Create Liability if Users Are Not Properly Trained.” Fasig & Brooks, 06 May 2015. https://www.fasigbrooks.com/blog/2015/may/new-medical-technology-can-lead-to-errors-that-c/

    Pourhosseini, Samira, et al. “Key Aspects of Providing Healthcare Services in Disaster Response Stage.”  Iran J Public Health, 2015. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4449997/

    Siwicki, Bill. “State Finds Hundreds of Medical Errors Linked to Medical Technology.” Health IT News, 2017. https://www.healthcareitnews.com/news/state-finds-hundreds-medication-errors-linked-healthcare-technology