Unveiling Invisible Illnesses

Rare Disease Day

February 28, 2019February 28, 2019 mistibludream

It is Rare Disease Day so obviously I am jumping on this moment to raise awareness. I have Ehlers-Danlos Syndrome and a rare type, called cardiac-valvular EDS or cvEDS.

Hypermobility is very common with EDS. There are many, many other health issues that fall under the umbrella due to this collagen defect. Imagine your joints are like rubber, frequently popping out of place from even just a hug or rolling over in bed. Sometimes these joints stay out of place or wear down. It is a painful disease to many.

This does not only affect joints but can also affect your organs.

We are all different and we call ourselves Zebras because in the medical field, doctors and nurses are trained that when they hear hooves to look for horses not zebras. This mentality has caused me to go undiagnosed and medically neglected for my entire life, up until I had genetic testing last year. Despite my heart issues and frequent ER visits, being young and seemingly healthy has had me labeled as drug seeking or having anxiety attacks.

The reason why is because EDS and dysautonomia (dysfunction of the autonomic nervous system) does not show up on routine blood work. I have never done drugs, besides cannabis, and even after open heart surgery and a broken sternum I did not even finish my pain meds prescription. I have been treated as if I were an IV drug user, because in my area that is the only reason someone of my age would have this extent of damage to their heart. I am so incredibly thankful to now be taken seriously with a diagnosis, but it is bittersweet because this syndrome is progressive and for me, my heart is always at risk. In my recent echo, I have developed a dilated aortic root. This is beyond scary to me because EDS, especially cvEDS comes with aneurisms. Dealing with this type of diagnosis as well as chronic pain and illness is mentally exhausting.

I am passionate about awareness is because it took so fucking long to be heard. I suffered for so long not taking proper care of myself and not knowing the correct treatments. I have been called a hypochondriac by exes and have hidden behind a mask for years. I want others to know they are not alone and I want medical professionals to see us.

Health, mental health, Unveiling Invisible Illnesses

Waking Up in Pain

February 24, 2019February 24, 2019 mistibludream

Mornings are hard. When you think of Sundays, you think of sleeping in and waking up to the sun finding it’s way to to you. You think of sitting up, a nice stretch and a moment to admire the open window sharing hints of a beautiful day.

The reality is that you wake up from pain. And you have woken up several times already but you hurt too much to go back to sleep and the sun is up now, so you may as well get out of bed. Lying in bed hurts. It isn’t this relaxing thing where you can leisurely sprawl out in bed and feel like you are on a cloud, melting into your mattress. No, you have to move because one position makes your tailbone go numb and another hurts your collarbone and lying on your stomach makes your back feel broken.

So, now you get up and everything pops back into place. Almost everything. Your left hand and lips are tingling and numb but it only last a few minutes. You walk to the bathroom, holding on to everything you pass for stability so that you don’t fall. Even when you sit down, reaching to wipe is excruciating and demoralizing. It breaks you just glimpsing into the future, wondering if are going to need help wiping your own ass one day. Then, as much as you want to crawl back into bed and melt into your significant other, you quietly walk out of the room so you can find something to do and walk off the pain of sleeping.

Your head is killing you and you are nauseous as if you are hungover. As you walk to the kitchen, everything fades away and you can’t see. Your body starts to feel fuzzy and go numb, just like before you pass out. You don’t typically fully pass out so you know you can just keep walking through it as long as you hold on the way there. You are a pro and have smiled and held conversations while on the brink of passing out but you know it passes and this is your norm.

When pain levels are high, your morale is low. Your dreams and ambition slide over to the back burner. Sometimes they even get put away into Tupperware to decay in the back, hidden behind the fruit. Sometimes the sunshine creeping in through the window looks so far away. But you just get through this. You hold on to the idea of your next good day, whenever that may be. You find hope in new remedies and whatever ways you can try to have control over your health. You find hope in the people who support you and your loved ones.

“Mornings are hard. When you think of Sundays, you think of sleeping in and waking up to the sun finding it’s way to to you. You think of sitting up, a nice stretch and a moment to admire the open window sharing hints of a beautiful day.”

*On the pain scale of 1-10, I have never been under a five. My one is a five. I am not wanting sympathy but what I am wanting is to be honest about how I feel instead of hiding with an autopilot response of “I’m fine.” I want to raise awareness for people like me so they don’t feel alone, and for people without chronic pain so that they can understand their loved one or friend. We live in a world of sucking it up and smiling through the pain. We are suppressed and depressed with a bottled soul. It isn’t right. Be real and let others be real so they they aren’t lost and alone.

mental health, Unveiling Invisible Illnesses

Are You Still In There?

February 21, 2019 mistibludream

When bad days turn into weeks. When your strengths are suffocating. When your dreams drift too far. When nothing seems fair. When tears turn into fears. When you get lost. When you feel defeated. When you stop feeling. You aren’t alone.

Health, Unveiling Invisible Illnesses

The Grey Area of the Medical Field

February 18, 2019February 19, 2019 mistibludream

The grey area is a state that doesn’t live on one side or the other. It is nomadic and intermediate; the blurry line.

The grey area is where many undiagnosed, dismissed and neglected health issues live. For some, they got tossed back and forth between doctors and never really helped by any, or are just getting by with the small crumbs of progress over a span of time.

The grey area is also the wait. It’s waiting for the inevitable, irreversible and impending progression of a particular diagnosis. It’s knowing a risks but having no control or peace of mind. Sometimes you float in between acceptance and anger.

The grey area is where the people who don’t fit in the one-size-fits-all category call home.

Many of us only know the grey area, constantly hoping someone will understand us or send out a rescue team to bring us in.

Awareness is for us, in the grey area, looking to fit in somewhere, to make sense, to have answers, to not be neglected or alone.

Share your fire until it lights up the sky, defining a new meaning and growing into a new path where those who were once lost can be found.

Health, Unveiling Invisible Illnesses

February Heart Awareness Month – My Heart Story

February 3, 2019February 5, 2019 mistibludream

As you know, awareness is my passion. February is Black History Month (current read: Maya Angelo Poems) and also American Heart Month. I want to share my heart story in hopes to inspire and educate.

I was born with Wolff-Parkinson-White Syndrome, meaning that I had an extra pathway between my heart’s upper and lower chambers. This pathway cause rapid heart rates.

I was undiagnosed until my first cardiac ablation at the age of 19. Most of my childhood, I complained that my heart was racing but my softball and basketball coaches, P.E. teacher and most adults said that it was normal when you are running around. Well, it was normal for me alright.

Eventually, my face started to turn bright red during episodes and white around my eyes and lips. It was exhausting, but once again, it was my normal. I loathed gym class. To get out of it, I would go to the school nurse and tell her I didn’t feel well. At 15, I took my usual stroll to the nurse’s office to get out of P.E. and after looking at my face, she was prompted to take my pulse; it was too fast to count. She called an ambulance but my fast rhythm had converted to a normal rhythm by the time they showed up. It was difficult to catch the arrhythmias so my parents and doctor met and decided an event monitor was best. Within the hour of getting home from the doctors visit, my arrhythmias kicked in and we sent it in right away. I was having Supraventricular Tachycardia with rates over 250 beats per minute, nearing the 300s.

After being told I would outgrow SVT (which I had since I can remember), I found they were wrong and it only got worse. My heart would go into these arrhythmias about five times every hour, all day, sometimes lasting up to 30 minutes. At the age of nineteen, I finally have my first cardiac ablation. This procedure lasted six and a half hours! Normally, it only takes 45 minutes to an hour and a half, but they discovered the extra pathway and I was a difficult case. Since it was unsuccessful, we tried again in six weeks. Though my episodes were reduced, I still had arrhythmias and had two more ablations, a total of four cardiac ablations.

My heart would drop into the 30s and 40s and shoot up near the 200s, all day and night, with no rhyme or reason. I always asked what caused all my health issues no one cared to investigate. In my early twenties, I was also diagnosed with (POTS) Postural Orthostatic Tachycardia Syndrome but never spoke of it again. I had no idea what that meant and was uneducated by my doctor, therefore I never managed it. I didn’t stay hydrated and I was told to avoid salt, when really I needed a high salt diet. I spent my entire 20s with roller coaster heart rates and a lack of education about my health, as well as missing puzzle pieces to what was causing my chronic health issues.

In 2011, at the age of 26, I had open heart surgery. Prior to this, I went to multiple ER visits and appointments but they were looking for SVT and high heart rates, not a leaky aortic valve. I spent years being dismissed as they refused to look further. After finally getting an echo, I was diagnosed with moderate to severe aortic insufficiency. No doctor in my area wanted to touch me and when one hesitantly suggested to operate, I did not trust his confidence. I joined Heart Valve Surgery group online for support and found Kevin Accola, the most incredible surgeon in the area.

Dr. Accola said, “wow, what an interesting case! I can’t wait to find out what is going on and fix it! When is good for you?” I about cried in disbelief that someone cared and wanted to help. We scheduled a date. He informed me that he would do his best to repair my heart to avoid an artificial valve so that I didn’t need to be on harsh meds my entire life. He showed me the valve I would get just incase I needed one. I held it in my hands, the metal piece that could go into my heart… the heart that my doctor was going to have in his hands. Fortunately, he was able to repair a hole in my aortic valve and with a three inch incision instead of the classic nine inch sternotomy.

Healing was tough but pretty smooth. I had almost accidentally overdosed on pain meds. I was supposed to have someone taking care of me for the first two weeks and with a broken sternum and sensitive heart rhythm, I was pretty out of it and couldn’t keep track. I also had a hard time with my breathing and started to get fluid in my lungs but worked hard with my spirometer and by three months, I was feeling back to myself. I did reject the sternum wires and needed to get them removed as they were about to come out on their own!

In January of 2017, I was having scary arrhythmias and my body was going into shock. I was in the ER every other night for two months. My arrhythmias were not getting caught at the ER so they diagnosed me with anxiety and panic disorder, sending me home. I saw several doctors but once you get (mis)diagnosed and labeled, it is hard to be taken seriously. I finally got an event monitor from my cardiologist to record my rhythms for a few weeks. I passed out leaving an appointment and it was caught on the monitor. My doctor ordered a Tilt Table Test and triggered an episode. I was diagnosed with Neurological Syncope, where my heart rate would randomly plummet. With my nighttime heart rate dips into the low 40s and occasional 30s, I finally got a pacemaker in June of 2018. Truth be told, I could have used one a decade ago, when I had documented ER visits with rates in the low 30s. However, I stuck with the same doctor and never got outside options previously.

A few of my main health issues are caused by Dysautonomia, the dysfunction of the autonomic nervous system. In 2018, I was finally diagnosed with Ehlers Danlos Syndrome.

As of today, my latest heart update is that I have been having tachycardia in my sleep, picked up on my pacemaker checks. My recent echo showed that three of my heart valves leak mildly and my aortic valve leaks mild to moderate. Both my aortic and mitral valve have sclerosis (calcification and thickening). My aortic root is mildly dilated, which could be the start of an aortic aneurism. Aneurisms are fairly common with Ehlers Danlos Syndrome.

At some point, I will need my valve replaced (at the very least). I decided to go with a pig valve to avoid the meds and because I rejected the sternum wires last time. I also have a genetic mutation MTHFR which can possibly be the cause of metal sensitivities, and another mutation that causes me not to metabolize Warfarin, a common med used to thin your blood after a heart valve replacement. Fortunately, I didn’t need the artificial valve earlier, before I found out about these mutations.

And now we watch and wait. Having a lifetime of heart issues is a scary thing to live with. Knowing that age is nothing but a number for me, and irrelevant, is a hard pill to swallow. Being told I am “young and healthy” is something I hear often. Even with my health history, I still have a hard time being heard. This is why advocacy and being educated on your health, is so important. I truly believe that I would be dead if I hadn’t fought to be heard.

Keep up with your medical check ups and get copies of all of your tests and labs. Ask questions, get second opinions and educate yourself and your family. If you don’t like your hairstylist, you go to a different salon, right? So why do we act stuck with whatever doctor we are handed but will so easily get a new stylist? Find a doctor that you trust and feel comfortable with. Be a teammate with your health plan and don’t give up when you feel dismissed. Find a support group online because you will learn more from them than your physician.

Spread awareness, educate yourself and others, and advocate for your health. You got this!

Health, Unveiling Invisible Illnesses

The Cycle of Grieving a Chronic Illness

January 31, 2019January 31, 2019 mistibludream

The Kübler-Ross model of the five stages of grief was pioneered by a Swiss-American woman named Elisabeth Kübler-Ross. Her book On Death and Dying elaborates more on this theory and her studies. Her model of the five stages were my inspiration but I put a twist and my own touch on the stages in the perspective of living with a chronic illness.

For chronic illnesses, this model is not linear. It is a circle that loops back around, over and over. Identifying these feelings helps to not feel alone and to make sense of what we are feeling, that it is actually normal. If you don’t have a chronic illness, maybe you want to understand what goes on in the mind of someone who does, and thank you for that!

*Photo by Winship Photography

Shock and Denial

One moment you are thumbing through what to wear in your closet, the sun is shining through the window and the entire day is ahead of you. The next, you are rolling out of bed in agonizing pain after waking up at least six times throughout the night; this is your norm. Perhaps you have lived with chronic illnesses for most of your life and it has always been your norm, only you have been dismissed by doctors and left without answers.

When you finally get a name or answer to your health issues that were ignored for decades, while you were labeled as a hypochondriac by people you thought cared about you, it can be a shock.

There are times when I go into my doctors office and beg for another set of labs. “Please, test me for metals and maybe my vitamin levels again. I know my thyroid is perfect and my electrolytes are beautiful but I can’t accept that I am stuck with this pain forever. Maybe, just maybe there is something else,” I said to my doctor last week. Usually, I get the results and they are perfect or maybe a few small flags but nothing to be causing my body to feel like I was thrown down a flight of stairs just before getting trampled on by a stampede, when all I did was sit at my desk or get ready for bed. That’s denial, my friend. It’s like you finally get that answer you have searched for and you want to light it on fire and ask for a redo.

Denial is also working full time when your body should not work at all, but you have bills to pay. So, you work all day until you literally collapse in bed, too tired to shower, muscles spasming everywhere and every atom of your existence is in agony.

Denial is smiling and listening to your friend’s conversation while your vision fades and your hands and lip go numb but you don’t want to say anything because it’s normal for you and you want to be normal for them.

Anger

There are moments you are doing something mundane, like brushing your teeth, and you just start sobbing.

“Why me?“

You question everything, combing through your past and present to investigate where you went wrong or what if you had taken better care of yourself when you were younger.

“Why me?”

Why, though? Why, when you are such a fighter and you were always so positive and you did everything by the book and still, here you are, suffering. It isn’t fucking fair.

The cherry on the cake is when people tell you that maybe exercise would help but when you exercise, your heart rate skyrockets and you get chest pain and bronchial spasms and feel like passing out. Or, “you need to heal your childhood traumas” gets thrown at you for the 5th time but you have done nothing but read inspiring self-help books, healing and even see a therapist. “Maybe if you changed your diet or took this supplement…” Sure, nutrition is important but what haven’t we tried at this point? Even after two solid years of eating clean, cutting out preservatives, processed foods, dyes, additives and fillers and eating a strict anti-inflammatory diet, juicing, supplements, etc. the changes are minimal.

Yes, there is some relief and my migraines are minimized but that doesn’t put a fucking dent into this mountain of health issues. I have tried all the protocols, diets and supplements and will probably continue trying new ones throughout this cycle of grieving. Maybe Karen could help her arthritis if she stopped drinking her diet coke and did yoga, or Steve could lighten up on the drinking and late-night fast food binge, but we are not all Karens and Steves.

There are moments when I am pissed. I am furious. I am exhausted and in pain, and I am so very angry. But these moments pass and I continue to fight and be positive. Let us move through the steps and keep your advice to yourself unless it is requested. We don’t live in this stage but we visit it often.

Bargaining

“I promise I won’t eat anymore chocolate peanut butter cups in my car, on the way home from the grocery store. I am going to juice every morning. If I do better, maybe I will feel better? I will be more spiritual, more positive and even do yoga.”

That is the sound of bargaining for a better outcome. Yes, lifestyle changes are important to our health and especially balancing stress. Don’t confuse this with not taking responsibility. Be responsible! But know that this roller coaster of being disheartened and motivated is the pattern of grieving. We often think that maybe we didn’t try hard enough and part of the denial aspect is thinking that maybe if we tried harder there could be a solution.

The individual is clinging to the threads of hope, however thin and worn the fabric may be. Breakthrough treatments in medicine or intervention by a spiritual being or force are seen as a source of a temporary suspension of the inevitable outcome. –eCondolence

Depression and Anxiety

Depression is the feeling of impending doom, but that feeling sticks around, even when you are happy. It slithers into your existence and it isn’t always tied to a memory or life experience, it just exists. Even on a good day, that feeling can hang around. You can hide it and you can pretend it isn’t there, but it’s the nervous butterflies in your stomach that grow into your chest. Positively thinking it away is not a thing. Depression is not always a mentality that you can control, it’s also chemistry.

Though depression and anxiety do not discriminate, they can be more prevalent in the disabled or chronically ill community.

Imagine building up your goals and life-long dreams. Your ambitious personality and positive mental attitude kicks ass and you have the world at your fingertips but you keep getting knocked down due to uncontrollable circumstances, like your health. Sure, you can dust yourself off and try, try, try again! However, it’s fucking hard and it sure gets old when decades go by and you watch your peers buy houses, new cars and live successful lives. Meanwhile, you try to figure out how you can afford not having income for weeks or months at a time as you recover from surgery, balancing which medications you can afford while making sure there is enough money left over for a cheap dinner. You then start over, just to ride the big wave till you crash again.

It can also be lonely, even when you have supportive friends and family. It’s a place that not many people understand. It’s an unpaid full-time job. It’s exhausting. It’s scary. Support groups are very helpful; finding a community of people with similar health issues helps you cope, not feel alone and also educates you on your illness.

Anxiety is an issue as well because having a chronic illness can be traumatic. For example, I had WPW Syndrome and my heart rate would get in to the 250s. I have also had many scary arrhythmias so when I hear the hospital heart rate beeping sound on a TV, it gives me major anxiety. It is a trigger for me, as well as fast rhythmic tapping.

Acceptance

Put your warrior paint on! You have your medical records organized, tests and labs done. You are making progress with answers or even starting new treatments. You got this! Or maybe you don’t, but you have just accepted the cards you are handed and will make it work. This stage varies for many and is a sliding scale. For some, it could mean you are managing. For others, this stage comes and goes, varying on what condition your health is in. Again, this process is not linear… it’s a scribble!

You might visit the land of acceptance often. Maybe you have a beach house here or maybe you are planning a vacation here but more than likely, you never retire here. We are nomads of this grieving process. We jump around, visit, flip flop between two stages and circle around.

Acceptance is the best place to be. It’s when we feel really positive, and not just faking it. It is when we fight for awareness and advocacy. It is when we make progress or actually have a less painful day. It’s when your treatment is manageable and you’re coasting.

These are the five stages of grieving your chronic illness. Keep a journal, see a therapist regularly and join support groups. This ride is tough but you are not alone. It’s important to manage your mental health as well as your physical health.

———-

http://www.suicidepreventionlifeline.org/

tel:1-800-273-8255

Unveiling Invisible Illnesses

Unveiling Invisible Illnesses – Endo and Interstitial Cystitis with Francesca

January 31, 2019January 31, 2019 mistibludream

Endometriosis is when tissue similar to the lining of the uterus spreads outside of its home to other organs, causing pain and inflammation. It can begin as early as the first mensuration. It is estimated that 1 in 10 women suffer from endo. There are many theories about cures and causes but more research is required to get the answers we need and spreading awareness is a start.

Francesca has started an online support group years ago and is on the battlefront paving the way for young women. Five years ago, she had a laparoscopic excision done by Dr. Sinervo and no longer experiences endometriosis as her chief complaint. Her main issue now is Interstitial Cystitis, or painful bladder syndrome that causes pelvic discomfort. Francesca is also seeing specialists for other health issues like Orthostatic Intolerance.

What is your official diagnosis?

Endometriosis, Interstitial Cystitis, Pelvic Floor Dysfunction, Irritable Bowel Syndrome, and Orthostatic Intolerance.

How long did it take for your first initial symptoms to get an official diagnosis?

Four or five years for Endo, IBS, and PFD. Two years for IC, and about six months for OI.

How have your illnesses affected your daily life?

Currently, I no longer suffer from Endometriosis pain, but I do suffer daily with PFD and IC pain. I also struggle with dizziness and heart rate/blood pressure problems daily due to OI. I struggle every day to work, go to school, and balance a social life.

Do you have any advice for those who are newly diagnosed?

If you feel your doctor is not listening to you, it’s always best to seek a second opinion (or even more if you have to) until you feel you have found the best care. Always be your best advocate and try to find a true well-versed specialist.

Tell me a little more about your group:

Teens And Young Adults With Endometriosis was a support group I started in 2014, originally for teenagers that have Endometriosis. As my members and I became older, I decided to open it up to young adults as well. Through my group, I hope to not only give support, but help provide these members with an early diagnosis, proper education, and treatment options.

What is something you wish every doctor understood?

I wish every doctor understood that it is extremely important to keep up to date on new medical information. Since so many do not do this, we are forced to be stuck with misinformation and misguided treatments or even unnecessary treatments that could be avoided.

Favorite quote:

“Let me tell you, if 180 million men worldwide had unbearable pain during sex, bowel movements and exercise, and were offered as treatment: feminizing hormones, surgical castration or pregnancy, it would be an international emergency to which we would transfer our combined defense budgets. We would not be having this misogynist conversation regarding enough money.”-Nancy Peterson

Three things you can’t live without:

Heating pad, boyfriend, and my Endo Warriors

What goals do you have for the future?

Currently, I’m taking my prerequisites for nursing school. I hope to graduate with my bachelors and possibly my masters in nursing. My dream job would be to work with an Endometriosis specialist or in pediatrics. After that, I hope to marry my boyfriend who has been with me through all my diagnosis’ and to have a few children.

What is the scariest moment you experienced during your health journey and what are the ways you manage mental health while dealing with medical issues?

The scariest moment was probably when I had a bladder installation for my IC (where they put medicine into your bladder with a catheter). They did the procedure incorrectly with the wrong sized catheter, made me bleed, spilled half the medication on me, and forgot to use lidocaine. I was supposed to expel it after a half hour but was unable to urinate for hours leaving the medicine in me to damage my bladder and cause a severe bladder spasm. I was unable to get back to my doctor so I had to catheterize myself with the wrong size catheter (too large) and the pharmacy also forgot to give me lidocaine. I was able to do it but was left in severe pain for about a month.

To manage my mental health, I regularly see a therapist and make sure to take breaks to do the things that I love even if I have to do them in bed. Support groups on social media are also helpful.

Francesca’s Facebook, Instagram, Twitter, Youtube, Tumblr: @msendowarrior

Health, Unveiling Invisible Illnesses

Spoonie Nightstand

January 21, 2019January 21, 2019 mistibludream

What is a Spoonie?

For those with chronic illnesses, we have a general way to describe our energy levels and fatigue: the spoon theory. We get 12 spoons per day, which is a metaphor in which those with disabilities understand or use to explain how they feel. Each spoon signifies a measurement of energy. Going to the store costs 2 spoons, and on a rough day, taking a shower may cost 4 spoons. Cleaning the bathroom is another 3 spoons. That leaves us with 3 spoons left for the rest of the day. We may have to borrow spoons from tomorrow, leaving us bed-bound.

Spoonies are people with disabilities, chronic illnesses, chronic fatigue and anyone with medical conditions that limit their activity.

My nightstand essentials:

Some of my favorite necessities are found on my Spoonie Amazon List and others are from Wildling Apothecary.

Enchanted forest essential oil scented CBD and magnesium lotion, for aches and pains, from Wildling Apothecary

Kiss of Dreams sleepy time roll-on for relaxation before bedtime and 1000mg CBD subliminal drops, also from Wildling Apothecary.

Salt lamp for purifying the air and of course to shed some light while I eat in bed… yes, I eat in bed.

A mini Buddha that was my grandmother’s. She was my favorite person and we had such a special bond. She lived to be 96 years old and I still think about her every day.

Lip balm is something I always need on my nightstand because I am often dehydrated, despite how much water I drink. I can’t stand the feeling of dry lips so they are always moisturized.

I always have water on my nightstand but since I just tidied up and added a little shelf, only herbal tea is pictured. I have herbal tea several times per day. I love peppermint and ginger for an upset stomach, kava or chamomile to relax and elderberry for immune boosting. I have quite a collection and also make my own blends.

Books! I won’t lie, it takes me forever to get through books because I flip through many and with a hectic schedule, it is hard to squeeze in the time. Really, I just need to make the time. My current favorite reads are The Dysautonomia Project and Dirty Genes.

My necklace from AWARECauses and labradorite earrings from Do Designs find their happy homes next to the bed because I can’t sleep with jewelry on.

My nightstand and granite heart dish were both handmade by my husband. He is pretty damn awesome.

I have my tiny (Walmart) heater year round. Dysautonomia is the dysfunction of the Autonomic Nervous System and can affect the automatic things that your body does, like breathing, body temperature, blood pressure, and heart rhythm. When my body temperature drops I feel freezing; my hands turn white and I have a hard time breathing due to shivering. This little heater keeps me warm without making my husband hot. I mean, he is hot though!

I love my diffuser and use many different blends depending on how I feel, my mood, or the time of day. Certain oils also keep the air clean and act as antiseptics. Not shown, under my nightstand, is a box of things like a blood pressure cuff, pulse oximeter, thermometer, hot packs for stiff muscles, wrist braces, compression socks, and other necessities. I try to keep them organized so I can find them easily. Monitoring my health is important so having access to a blood pressure cuff, for example, is needed to make sure my bp doesn’t get too low. It’s like being my own nurse and helps prevent ER visits because I can manage my care to an extent.

collapsible walking aid

Biotronik

Health, Unveiling Invisible Illnesses

How To Be There For Someone With Chronic Illnesses

January 6, 2019January 21, 2019 mistibludream

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 housecleaning 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 a 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:

Amazon Spoonie List

Wildling Apothecary

Patience.

We feel guilt and a whirlwind of emotions for having a chronic illness and for anyone who is involved. Your patience and support mean 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 nutshell, 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

Moving Forward in 2019

January 1, 2019 mistibludream

2018 was a good year, despite having cancer, multiple surgeries and a few ups and downs. 2017 was awful and scary. My heart was at it’s worst. My POTS flare was the worst I ever had in my life. No doctors were on my side. I was having potentially fatal heart arrhythmias and I am shocked that I am here to tell about it. I am forever grateful for my pacemaker and supportive family.

2018 was the year I got my health under control. I learned my body and what I can handle. I take care of myself and minimize toxins in my life. I advocate for myself and after 33 years I found out what was wrong with me and that it isn’t normal to feel pain every day, among a million other things. Despite no cure, simply having an answer has made my life better by educating myself, spreading awareness for others and learning about what is best for my health, as opposed to being in the dark.

2019 is here and we all say that each new rotation around the sun will be the best ever, but I have learned that it is okay to feel. It is not okay to plaster fake positivity over emotions. I set goals daily, weekly, monthly, yearly and will continue to work on every aspect of my life whether it is day 1 or day 365.

Sometimes I have bad days and I hate that it affects others, especially those who love and care about me. I am not going to share just my perfect moments and give people Sunday’s best version of myself. I am human. I know I am not easy to deal with sometimes. I am sorry, but this is me. I’m working on it.

This year, for me, is about acceptance and moving forward. I have been grieving the reality of my health and the limitations and life changes that come with it. I was angry. I was in denial. It is important to focus on the good things in life but that doesn’t mean you need to pretend that tough times exist…. just don’t dwell there. I accept the cards I am dealt. I refuse to be in denial, ashamed or to hide, and will learn how to cope better and continue to improve the things that I can control.

I hope you all are inspired by a fresh start but don’t forget that you can start fresh anytime. Each day is a new story to write. We are in control of how we navigate through our story and how we handle the things life throws at us. Pick your own adventure and make it a good one.