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, 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, mental health, Unveiling Invisible Illnesses

    The Invisible Battle of Chronic Illness

    Ehlers Danlos Syndrome is an umbrella of many ailments that fall beneath it. This genetic disorder manifests in many ways; various joints and organs are affected and there is a large range of severity on each spectrum. None of us EDSers are the same. We call ourselves zebras because most doctors think of horses when they hear hooves, but rarely it can be a zebra. We are the zebras in the medical world. There is no cure for EDS but each symptom can be managed separately. It is tricky because we sometimes have several specialists to manage each symptom, or comorbidity, which can resemble having a full time job. Juggling this health conditions not only takes a toll on our energy but it also takes up most of our time. 
    On a regular basis, I see several specialists: cardiologist, electrophysiologist, pulmonologist, cardiothoracic surgeon, rheumatologist, neurologist, otolaryngologist (ENT), endocrinologist, gynecologist, gastroenterologist, and of course my general physician. I also sometimes see a chiropractor for traction and the use of some machines to help build strength in my lower back. I don’t have access, but need to see a geneticist, nephrologist, ophthalmologist and orthopedic specialist. That is about 12-16 specialists every 3-6 months. If I see fourteen doctors four times per year, just as a guess, that is fifty six doctors appointments in a year! I also end up in the ER, on average, about six times per year and usually have one or two hospital admissions… on a good year. This year, I had a few surgeries already and last year I had a pacemaker put in. Last year I probably had close to fifty emergency room visits so we won’t count that year. 
    An average day for me is waking up around 2am-4am with lower back pain, thirst and several bathroom breaks. I never truly sleep through the night. I have a dysfunctional nervous system (dysautonomia) and suffer from Neurocardiogenic Syncope, Postural Orthostatic Tachycardia Syndrome, sleep apnea and issues with my body temperature, blood pressure, heart rate and more. My pain level has NEVER been under a five on the 1-10 scale. Not even for a moment. I usually have to be out of bed by 7-8am because my body is so sore when lying down for a long time. Even if I am sick, I have to get out of bed or the pain is so severe that I can not breathe. This means that I can not sleep for over six hours without a break, or the pain is unbearable. 
    I take most of my medications and supplements in the morning. I usually start my day off with a headache, nausea, low blood pressure and a general feeling of being hungover but without the fun tequila shots. As I make it to midday, my entire body aches. Every cell in my body hurts. I feel so fatigued and exhausted, even if I didn’t do much. My head hurts and if I am around strong perfumes, chemicals or exposed to any chemicals in my food, I will have a runny nose, body aches and migraine with aura (visual disturbances). My lips and left hand go numb, simultaneously, about five times a day. No one knows why. My symptoms often mimic a stroke so I fear that one day if I have a stroke, I wouldn’t know the difference. I have chemical sensitivities that are hard to avoid. Wearing a mask and watching what I eat helps. Usually by 5-6pm, I am ready to collapse. Sometimes I make it through, with a smile on my face, because I try to live my life to the fullest. Despite how I feel, I push it to the limit to be the best mother, wife, friend, student and so on. I refuse to give up no matter how hard it gets.
    By evening, I have made it through the day and usually my body temperature is low and I am freezing but somehow feel like I am burning up and running a fever. My temperature usually will read 96-97 degrees. It is incredibly uncomfortable to feel hot and cold at the same time. My chest feels heavy at night and if I lie on my back I start to feel fluid in my lungs. On a tough day, I will breathe so shallow while I fall asleep that I jump up gasping for air, with low oxygen and a racing heart. Other nights, I can’t sleep because memories flash back from the past when I was in the back of an ambulance or in the ER with chaotic arrhythmias. I close my eyes and hope to get to the next morning. It all starts over again in the morning. 
    Depression can be a struggle for those who suffer with daily pain or frequent traumatic hospital visits. I recently came up with the term “Post Traumatic Health Disorder.” Depression can also be a factor because we feel like we have lost the person we once were and are prisoners to a body that doesn’t feel like it belongs to us. Our friends drop like flies the more we cancel on them, relationships are strained and many physicians don’t take us seriously because oftentimes these symptoms don’t show anything in blood work and we are passed off as a mental case. Many doctors are not familiar with rare, genetic disorders so they typically label us with anxiety or a catch-all diagnosis and send us on our way. We feel alone and like no one understands. It is scary, disheartening and frustrating. Seeing a therapist is important, as well as finding a support group.
    Having an invisible illness is a battle and we all think of ourselves as warriors. We are warriors. We battle and fight every damn day. Tears are shed on the battlefield often and we watch our tribe through ups and downs on our online support groups. We have lost some and watched others give up. We keep fighting and supporting each other and raising awareness while we struggle to make it out of bed.
    Always be kind to others, as you have no idea what they are battling under all that makeup and forced smile. And to those who are my fellow warriors, I believe you.
    Health, Unveiling Invisible Illnesses

    PTHD – Post Traumatic Health Disorder

    A feeling grows over you, nuzzling into the pit of your stomach that buzzes out to your limbs. It’s like you are standing at the edge of cliff but there is no beautiful view, just a worry so strong that it consumes you. Your blood feels thick as it boils through your veins, dragging it’s gloom to the surface of your skin, begging to get out. This is the feeling that takes over your brain, your gut and your heart. It’s the aftershock of a traumatic event that creeps up on you, tapping you on the shoulder and pouring itself into your bones.

    Post Traumatic Health Disorder is a name I thought of to put a title on a common feeling that many people with health issues can relate to. Health anxiety and depression from chronic illness are frequent concerns for many people.

    Common struggles for people with chronic illness:

    • Missing your previous, healthier life and adjusting to a change due to health issues
    • Having to cancel on friends and family often or change plans because of health
    • Feeling secluded and like no one understands you
    • Financial issues due to lack of work or missing work from illness
    • Feeling exhausted and having a hard time keeping up with minor tasks
    • Not talking about how you feel or your feelings because you feel like a burden or too like you are being too negative
    • Insurance issues, scheduling conflicts and other general concerns

    I often wonder why doctors don’t ask their patients how they are coping with their health issues. For some, they hide their anxiety or depression out of fear that their health issues will be dismissed and with anxiety. Why can’t therapy or counseling be offered or suggested after a life changing surgery or health event?

    For me personally, my traumatic health memories sometimes even follow me to bed and enter my dreams. Having a small health scare, like a few palpitations in a row, can trigger PTHD and put a damper on the rest of my day. Like a dark cloud following me around all day, I can’t help but think of moments when my heart almost gave up for good. My lips turned dusky as everything around me faded out. My heart was struggling and chaotic as if each beat could be the last. My limbs lie cold on the ground as I struggle to take tiny drops of air into my lungs. My life did not flash before my eyes but a sinking feeling of worry about my kids growing up without a mother and how could I just meet the love of my life and be taken from this world from my family that I love so much.

    It’s not fair.

    I am not ready yet.

    Please.

    Help.

    Every palpitation I get is a flashback of these moments. Some days are so beautiful and the sun shines, blanketing everything in gold. The air is perfect and you have everything the be grateful for but still sometimes those moments tickle your neck because you are so scared to lose everything.

    You are not alone.

    Finding local or online support groups are helpful for finding answers and a tribe of others who understand what you have gone through or what you may be going through. Seeking therapy is also a beneficial way to learn how to cope and work though stress. You are not alone. Burying your feelings or sweeping them under the rug is not a way to get by. Dealing with your trauma is nothing to be ashamed of or ignore.