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, Unveiling Invisible Illnesses

Unveiling Invisible Illnesses – Stargardt Disease

Stargardt Disease, also known as macular dystrophy, is a genetic eye disease that causes progressive damage and degeneration of the macula. The macula is responsible for seeing sharp straight-ahead vision. The ABCA4 gene is linked to macular degeneration, which is central vision loss. The light sensitive cells in the retina deteriorate and affect the ability to fine focus, primarily the central vision.

An invisible illness is a disability or illness that is not immediately apparent or visible. These illnesses significantly impair daily living and normal activities while the individual appears normal and healthy. It is my mission to raise awareness on each chronic illness, lessen discrimination from the public, reduce misdiagnosis, to help others feel connected and not alone with their diagnosis, to share our stories to friends and loved ones for better understanding.

I interviewed Alyssa Hullinger to learn more about her invisible illness so that I could share her story. The first photo I took was to test my camera settings and the focus was on the background, all around Alyssa and not on her. After uploading the images, I viewed that first photo and realized: that is probably how she see everyone.

What is your official diagnosis?

Stargardt Disease

When did you get diagnosed and how long did it take after initial symptoms?

I began seeing some “spots” in June of 2016. I was 7 months pregnant with my daughter at the time. In January of 2017, I went for a routine eye exam and found it very difficult to read the chart, specifically with my right eye. My eye dr is a close friend, she checked me out and brought in the ophthalmologist to ask his opinion. After he had a look, they immediately brought me in for a CT of both eyes and recommended I meet with a retina specialist. I met with the retina specialist in June and he suspected one of two genetic diseases that affect the macula. He recommended I see the genetic specialist at Bascom Palmer in Miami. I was diagnosed with stargardt’s by the genetic specialist in October of 2017.

What advice do you have for anyone struggling with this same diagnosis?

Stargardt’s is a degenerative disease and not one person is alike. I was angry for quite a while when I found out that I “should” expect to completely lose my central vision. The disease takes away the ability to see fine details. It is terrifying.

I would tell them that it’s ok to feel whatever emotions it is that they are feeling. Feel it out and then discard it. Because focusing on what you are afraid of will only bring it to the forefront. Be grateful for the things you can still see. Look at things. Really look at them. All of the time. Don’t miss any opportunity to watch everything. Study the faces and hands and bodies of the people you love most. Be in full time gratitude for all of the things you can see right now.

What are three things you can’t live without?

Of course my husband, my daughter and our new baby on the way. My family is my whole world. My husband is my rock.

Good coffee!

Adaptability.

Favorite quote:

It may be that when we no longer know what to do,

we have come to our real work,

and that when we no longer know which way to go,

we have begun our real journey.

The mind that is not baffled is not employed.

The impeded stream is the one that sings.

–Wendell Berry

What are your daily struggles?

My biggest challenge is seeing faces. It’s so disheartening to not recognize people I have known forever. It is very challenging to make out the details in faces. Especially in backlit or dim lighting. The other day, I held out my hand to introduce myself to a person I’ve known for years. Also, reading to my 2 year old. I have a light that I clip on to books to be able to see a little better. It’s still a struggle sometimes to see words written in fancy fonts. Again, the fine details are challenging. I’ve learned to take my time when reading to her. She doesn’t understand why I’m reading slow and often becomes disinterested. Driving is becoming more challenging as well. I stopped driving at night (unless it’s a very short distance) and I won’t drive in places that I don’t know, even in daylight. I sometimes need to be reminded that I already know everything will be alright.

How do people respond when they find out about your diagnosis?

The most frustrating and most common response is when people ask “can’t you wear glasses?” I do wear contact lenses and/or glasses for near sightedness which is unrelated to this disease. Since my diagnosis, I have been getting my acuity tested every three months to help fine tune the sharpness of what I can see; my eye dr is magic. But no, there aren’t glasses that can “cure” this. If it was that easy of a fix, I certainly would already have them! I have kind of crafted a short description of stargardt’s to explain why my vision is altered. Usually the response after my speech is “that sucks!” Most people, especially my coworkers at my part time job, are super helpful when I ask what something says or for help finding things. I’m so grateful for their patience and kindness.

What inspires you and keeps you motivated despite your invisible illness?

My dear sweet great friend, Katy is one of my sources of inspiration. She rocked and lived like no one I have ever known, and she continues to rock on. Since the moment we met, she has inspired me to be better and do better. Also,my brother, Jimmie. No one works harder then he does. On top of his tireless dedication and determination, he is so kind and humble and generous. He is full of heart and his heart is love for his family and career.

My motivation is my family, of course. My husband has my back, always, and making sure to teach our children that there is always another way; we just have to get back up and keep trying. Also, I’m blessed with incredibly supportive, strong friends.

Health, Unveiling Invisible Illnesses

Unveiling Invisible Illnesses – Preeclampsia

Roxanne is a strong woman with a masters in education and a passion for caring about others. The past few weeks have been roadblock after roadblock. Towards the end of her pregnancy, Roxanne was diagnosed with preeclampsia. She had to deliver her daughter early, by c-section, missing her maternity photo session and her baby shower, while worrying about the health of her preemie. After weeks in the NICU, they finally get to enjoy life at home as a new family of three, then Roxanne had a gallbladder attack. Soon after, she lost vision in one of her eyes.

I came to visit her in the hospital and she was in great spirits. While staying positive and hopeful, I still see a glimpse of worry tucked away. I recently came up with the name Post Traumatic Health Disorder (PTHD). Amidst the healing, support and love, it can still be tough not to be scared.

Roxanne shares her experience in hopes to let others know that they are not alone. As grateful as a new mother can be, it may also be difficult to see others have normal pregnancies and birth while going through many storms. At the end of the day, things could always be worse and we are given what we can handle and we grow from these experiences. We teach others how to be just as strong.

*I will continue to update this post, should there be any health updates while she is in the hospital or after she is discharged.

What is your invisible illness/diagnosis?

Preeclampsia, which has now become high blood pressure (hypertension), and idiopathic optic neuritis.

When did you start experiencing symptoms and how long did it take to get a diagnosis?

I had no idea I had preeclampsia until I was taken to labor and delivery at 32 weeks and told I was delivering that night. They said this was the only way to resolve preeclampsia. Luckily, another hospital I was taken to did not want me to deliver, but allowed me to be on bed rest after 24 hours of a magnesium drip and 24 hour urine collection. My diagnosis then was mild preeclampsia with edema, high BP, and protein in my urine. I was told to have NST (non-stress test) and labs twice a week to ensure the baby was doing well. I received two doses of steroids to speed up the baby’s development of her lungs, just incase she came early.

How many weeks were you when you had Brinley? Did you have any symptoms leading up to having her early?

I was 34 weeks and 5 days when I had another screening and was told my placenta has given out and she needed to be taken out by csection before she was stillborn. She wasn’t get blood and oxygen quick enough.

Did you have any health issues after she was born?

My health issues continued after she was born. I continued with the high BP, but swelling and edema went away. Brinley was in the NICU for two weeks. We were only home for a week when I had a gallbladder attack. I was three weeks postpartum and thought it was still preeclampsia related. We got to the ER and after testing, I had no swelling, high BP still, but no protein in my urine. I had my gallbladder removed at 5 weeks postpartum, and at 6 weeks postpartum I was taken off BP meds and dismissed.

Fast forward to 8 weeks postpartum and my eye was sore. With just one eye hurting, I figured it was from being tired with a new born so I brushed it off. I finally went to the optometrist where we thought allergies. It wasn’t. It got worse the next day and by day four I had lost all vision in my right eye. I saw an opthamalogist (a medical doctor) and had an MRI. They were looking for what was causing the blindness. I was diagnosed as optic neuritis. This means that something else is going on, because it’s not a single diagnosis but an underlying symptom of something bigger. Next, I’m admitted in the hospital for five days of high-dose IV steroids, and watchful eye on my BP and blood sugar. They have run many tests. I’ve been poked and prodded: two MRIs that show I’m perfectly healthy, and cleared from MS, lupus, Lyme disease, NMO, ANA, and everything auto immune. We still wait for the spinal tap to come back, but until then… it’s still just idiopathic optic neuritis. We are now on day four of steroids and my vision is slightly improving to where I can see shapes. It may take 4 weeks to a year to get back to where I was, but I will never be 100% in that eye. It’s scary, and my maternity leave has consisted of me and my newborn daughter taking turns in hospitals.

How do you juggle general postpartum with having health anxiety from so many traumatic health experiences in a row?

I don’t juggle. I’m just taking each day at a time. I’m not sure what else to do but to express my feelings and learning to try and deal with the fear of what’s next.

What advice do you have for anyone who is experiencing what you have gone through?

Trust your body and your instincts. I’m the most stubborn person I know, and I’ve had to push that aside and lean on people. My husband has been my rock, and without the support of him and my family and friends, I’m not sure I’d be doing as well as I am. Mental health is also important, so I’m seeking therapy now to help deal with anxiety and I will be the best I can be for my family.

Favorite quote:

It used to be, “What doesn’t kill you makes you stronger.” But it has progressed to, “This too shall pass.” It has to; and I will come out stronger than ever.

Three things you can’t live without:

My family, friends, and the ability to have a voice to help others and express that no matter what, you are not alone in your struggles.

What is the best way to support someone in your position?

Listen. Don’t react or give advice until it’s asked for. Listening and understanding, to a person struggling, is much better than just cutting them off and offering a solution. Sometimes we just need someone to hear us and know that our fears and anxieties are real and justified. It’s easy to tell someone to get over it or just move forward, but with trauma, no matter how big or small to you, is still trauma to that person dealing with it. It affects us all differently, but in the end…you are not alone.

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.
mental health, Unveiling Invisible Illnesses

Unveiling Invisible Illnesses – Depression and PTSD with Emily

You never really understand something unless you have lived it. Many of us don’t know how to respond when we know someone is deeply hurt and struggling. Saying something like, “be positive” or “everything will be fine” is not a bandage to anyone who struggles with mental health. It doesn’t make them a negative person. As a society, we are never told that it is okay to feel. We all are trained to suck it up with a smile on our face, making mental health a truly invisible illness. Take Robin Williams for example. He was charismatic, funny, talented and all around a great guy but yet he took his life.

Emily shares her story in hopes of raising awareness, letting people know they aren’t alone, and teaching others how to be a friend to those who struggle with mental illness.

What is your official diagnosis and when were you diagnosed?

I have depression and PTSD. I was diagnosed by my therapist this year around March. However, I have been diagnosed with manic depression since I was 14-15 years old.

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

My depression started when I was really young, I would say about 8 or 9. When you’re younger, not a lot of people take mental health seriously. It wasn’t until I was 15 or 16 that I saw a therapist for the first time.

What do you do to keep your symptoms managed?

I go to therapy. I’ve tried almost every depression and anxiety medication but they don’t work well with me. CBD tends to be the only medication that helps manage the symptoms. But I have to see my therapist once a week, we also do coping skills, like grounding, to help through panic attacks or flashbacks.

For my PTSD, I avoid obvious triggers, block certian things on social media, and I make sure people around me know my main triggers. I have to make sure any movies or places I go won’t have those triggers involved, so there is a lot of work to do before just going somewhere.

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

That the fight isn’t over, but you have an army beside you even if you think you don’t. Treatment is expensive but there are orginizations to reach out to help. I know it’s really mentally taxing to always have to think about your mental illness. You have to stay on top of it because one slip can spiral you. Life is so worth it though. The next week will never be the same as this one.

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

When your life is in your own hands, and you don’t want to be alive. When you are in a really bad low in your depression, your PTSD isn’t managed. It’s really scary being on that edge of giving up and letting yourself fade away. When I wouldn’t eat, or even move was my scariest experience. It lasted for a few months until my support system got me to a doctor.

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

As soon as someone hears about my illness, their face changes. They get this look in their eyes of pity, like I just turned into a glass rose in front of them. They never talk about it and pretend it’s not there after a while. It’s not everyone, but it’s the majority of the time. It makes me furious, mostly because I want to talk about it. I want people to know it’s not just me and there are other people that need you to talk about it too.

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

By being around and a voice for people with depression and PTSD that can’t reach out. With my illness, sometimes I can’t reach out, it stops me from getting help. Be educated in knowing how to read the signs of your friend or partners mental illness. Also know it’s not something that you can “fix” or help someone get better from. It’s a life-long illness that doesn’t always have a magic pill to fix it. So the best way to support someone, is to just be there. Talk about mental illness, keep talking about it because that’s what supports the idea therapy and help should be more mainstream and accessable.

I know you lost someone close to you who has also battled with depression. How has that affected you?

Losing Nate was one of the biggest eye openers of my life. Not only with him leaving like he did through suicide, but everything after. I learned about the responsibilities loved ones have after someone passes. Seeing everything I had to go through with his death made me realize how much my loved ones would have to go through if I died the same way. It’s unbearable. I joined a support group of people that lost someone to suicide almost immideately because it felt like I either wanted to join him or wanted to live to give that to him. The extremes in your grief are insane and almost impossible to understand because everyone feels them at different times.

Is there anything you wish you could say to him?

Oh, there is so much I would say to him. A good summary would be that I forgive you, and I am working on forgiving myself even though you told me it wasn’t my fault.

What are your triggers and do you feel comfortable explaining how you developed PTSD?

I developed my PTSD when Nathanial died. I did have previous PTSD that I didn’t know about yet, but this was the big set off. My triggers include suicide, blood, abandonment and certian trigger words like promises.

What type of advice would you have for anyone in the same boat?

You have to keep going. Even when you think you were doing really well, but have a panic attack for 6 hours crying one day before work. You still go. You remember that attack will not last forever; you will be okay. You get your “war paint” on, as I call makeup, and go to work. We push through but never forget to work through it too. Learn from every emotion you feel, learn what will make you happy and to start weening out the things that set you back into the dark. Because your light is so bright and it deserves to be out in the world for everyone to see.

Biggest inspiration? It can be music, anything…

Honestly, the people I am closest to are my inspiration. My friends and support group do things like invisible illness blogs, that help others who think they are alone, get connected. Nothing is more inspiring to me then helping people live their best life. My personal inspiration, having something to look forward to is Live Action Role Play (LARP). Making costumes, characters, relationships, meeting new people, being in the woods for a weekend fighting with boffer weapons. It’s absolutly an inspiring experience that helps as a coping teqnique too in a lot of ways.

Favorite quote:

“Everything’s gonna get lighter, even if it never gets better.” -Mates of State.

Three things you can’t live without:

My best friends, Spotify, LARP

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

It’s crazy to want to do something so far away as 5 years with my illness. Recently, I see myself getting ready to open and own a bookstore/venue with my best friend. A goal is to finish becoming a licenced sign language interpreter. Mostly, in 5 years, I want to have lived so much, but still say that I have so much more living to do.

1-800-273-8255

Health, Unveiling Invisible Illnesses

Invisible Illnesses Unveiled – Addiction with Red

Alicia (Red) Campitelli

Sobriety / Clean Date March 7th, 2016

Fifty percent of addiction is due to genetic factors. The other 50% is due to poor lifestyle choices. The same could be said for heart disease and other health issues. You may be genetically predisposed to something, like skin cancer, but there are ways to protect yourself and try to minimize your genetic risk.

One gene, for example, is the MTHFR gene mutation. This gene is common in 40% of the population and in a nut shell, it means that you can not process folic acid. Folic acid is a synthetic form of folate. If you can not process it, it will build up toxicity in your body and cause a folate deficiency which can lead to many health issues: autism, ADHD, depression, anxiety, addiction, heart palpitations, insomnia, mood disorders and even cancer. This is just one gene mutation, a common one, but there a many others.

It is important to take care of yourself, be healthy and learn to cope with life’s stressful situations. These important skills are not always taught in life or can be fogged by low self worth. Throw in poor nutrition, deficiencies and crappy sleep habits and you have a hostile environment for your body to produce chemical imbalances that can put you at risk for addiction.

I chose to interview Red because addiction truly is an invisible illness. It does not discriminate against sex, race, wealth or fame. It is not always obvious to others and some people can shine a light on the pieces they want you to see in their life, while keeping the rest in the shadows. There are many stories and these stories grow and grow and our country is overgrown with this epidemic. In hopes that we touch someone and inspire even just one person to become sober, I am helping Red unveil her story.

What is your official diagnosis and when were you diagnosed?

I am an addict. Substance abuse / drug addict with other borderline issues. I would say I was 21 when drugs and alcohol started to effect my life in a negative way.

What was your addiction?

My drug of choice was opioids (pain killers like oxycodone / roxicodone) and narcotics (heroin). Downers were my every day drug but I would do anything that was in front of me. I hated cocaine & crack but I would use till it was gone, even if I was the creepy chick in the corner freaking out alone. Blues made me feel “normal.” It’s kind of crazy to say, but it was true for that time period of my life.

Looking back, can you think of any warning signs that may have led you to addiction?

Low self-esteem throughout my whole life and never feeling good enough, in my own head, or to others. I engaged in an emotionally, mentally and physically abusive relationship, which soon started isolation, depression, lost of self-worth, diminished family ties and lack of interest in things I once enjoyed. After that relationship had ended I turned to drinking and childhood friends where replaced with using friends. I would build up an identity and when I lost it, I would fall apart.

What helped you get sober?

Enough was enough. I was tired of living the life I was, which wasn’t living at all. I didn’t want to die but I wasn’t thrilled about living. I was surviving. Groundhog Day (movie) surrounding around the getting and using and means to get more drugs day after day. Getting high wasn’t fun anymore and hadn’t been for a long time, but I couldn’t stop. I can’t put into words of how horrible that feeling was. I started heavily drinking at 21 but I could take a couple days off; however, once I started using opioids and narcotics it was all over. I used drugs all day and everyday. I remember quitting cold turkey one time, in the beginning, and lasted four days. I wasn’t ready until I went to rehab 2 1/2 years ago. I choose to go to rehab in a different state because I didn’t trust myself to get through withdrawals and not check myself out or sneek drugs in the facility, in my neck of the woods. I had to be honest if I was serious about changing. I am not saying another addict couldn’t get clean on a friends couch, by themselves, cold turkey or in the same state they used in, but I needed to escape to help with my obsession.

What advice could you offer to someone who is currently struggling with addiction?

Ask for help. I know it doesn’t feel like it, but things will get better; hold on.

There are so many possible ways to stay clean: 12 step fellowships, religion, celebrate recovery, working out / organized sports, family, maintenance programs, etc. If one of the listed above doesn’t work for you then switch it up. I don’t care what you have to do in order to change your life and get the needle out of your arm, liquor bottle out of your hand, pills out of your tummy, powder out of your nose and smoke out of your lungs; you need to create a new life. Stop repeating your negative self-destructive patterns. Try to find out why you do what you do and better yourself. Relapse can happen but its important to stop using as soon as possible and surround yourself with people in recovery. Keep in mind that relapse doesn’t have to be part of your story. You are not alone!

What advice could you offer to someone who is sober, in regards to staying sober?

Don’t pick up NO MATTER WHAT! The feelings of using will pass. Play the tape all the way through. Drugging will only make things worse in the situation you are trying to escape from.

When you were struggling with addiction, what was your mindset? At what point did you realize that you were struggling with addiction?

When I put drugs before anything or anyone, I realized I had a problem. I did care about people when I was in active addiction but if I had to choice between using and a particular person or drugs, drugs would win that fight. It’s sad yet it’s true, but in the moment, I didn’t look at it that way.

Favorite quote:

Oh man, my favorite quote… This is funny to me because my life before sobriety was so different. One of the quotes I used often was: “If anything could go wrong it will. I even have “Murphy’s Law” tattooed on my leg. Now I have turned into that annoying person I used to hate (on social media) with all the inspiration quotes.

“Don’t let you stop you”

“Fear is a liar”

“You are incharge of your own happiness”

“Get comfortable with being uncomfortable”

“When you are grateful you become less self-destructive”

“Oneday at a time”

Simple, right? I put this in my mind daily:

“My philosophy is, Its none of my business what people say of me and think of me. I am what I am and I do what I do. I expect nothing & accept everything. And it makes life so much easier.

-Anthony Hopkins

Three things you can’t live without:

Besides the obvious, in order to survive: Laughter, nature and companionship.

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

Staying clean from drugs & alcohol, paying bill’s on time, building credit, being here for my family’s lives as a loving, trusted and supporting member, furthering my education, building meaningful relationships, helping others and dedicating time to the community, being happy and filled with joy. Some people might look at that list and think that is what adults are supposed to do and I should want more for my life life a top of the line car, big house with white picked fence, money, travel around the world, the perfect husband, three kids… Well, you’re not wrong with wanting more but I’m just now learning to be an adult. I was very selfish in my active addiction and I was given a 2nd chance, so I’m taking it and trying to become a better person. I’ve been working on these goals since I got clean but I’ll have to continue the rest of my life.

Resources

National Suicide Prevention Hotline

1-800-273-8255

SAMHSA’s National Helpline 

1-800-662-HELP

Florida based recovery program

Peace Club

Non-profit movement to help people with depression, addiction and suicide

TWLOHA

——-

Photos by Misti Blu

Shoot location at Rockledge Gardens

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 a cliff but there is no beautiful view, just worry so strong that it consumes you. Your blood feels thick as it boils through your veins, dragging its 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 through 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.

Health, Unveiling Invisible Illnesses

Invisible Illnesses Unveiled – Scoliosis

Ra’chelle is someone I have known since the third or fourth grade. She was our babysitter in Clever, Missouri. Somehow, we both migrated to Florida and became photographers hiding an invisible illness. We touched base on Facebook and she opened up to me about her scoliosis.

I knew Ra’chelle as a badass cheerleader. I had seen her at practices and she would toss other cheerleaders up into the air and she would catch them! She was so poised and strong. I always looked up to her and had the coolest babysitter in town. I never had any idea that she could be in pain.

Scoliosis is a condition of the spine that curves sideways. It usually begins during puberty during the growth spurt.

What is your official diagnosis and at what age were you diagnosed?

I was originally diagnosed with a slight case of scoliosis, around the age of eleven or twelve, during a routine sports physical at school. They said it wasn’t too bad but I could probably get some correction of the curvature by wearing a 24 hour brace. As a new junior high cheerleader, my vanity wouldn’t allow the big bulky brace, which was my first mistake.

Currently, I have severe scoliosis, S shape spine, which has caused crooked hips, one leg longer, ribcage is twisted and ribs overlap on one side restricting my breathing at times. The other side of my rib cage hunches up on my right shoulder, my neck is “swan neck” curving the opposite direction it is supposed to, causing it to feel as though I am carrying a 50 pound head around by the end of the day. I have constant headaches; everything being crooked causes joint pain and catches in my knees and hips. My right shoulder dislocates on a regular basis and has to be popped back in. I recently found out that the exhausting pain I’ve felt in my low back for the last couple years is because I have a fracture in my lower spine. I have degenerating discs and osteo arthritis, consistent muscle tension, spasms, and pinched off nerves from everything trying to keep up with my physical activities. I have lost a total of 3-4 inches in height since high school. These are all issues I never talk about and keep to myself.

At what point in your life did you start to see or feel a change in your body? How did that affect you?

I began having some discomfort toward the end of my high school years, because of the sports that I was involved in, and the activities I proceeded to do without the suggested brace. It didn’t feel serious to me at the time. I was young and invincible! By my early twenties, my condition had progressed enough that I had already lost an inch in height since graduating high school. I was having a considerable amount of pain and symptoms. I had Medicaid at the time, which didn’t cover chiropractic treatment but they sent me through an extensive Pain Management Course. I learned self-hypnosis to help me sleep, had some therapeutic massage, learned that no combination of narcotic pain meds or muscle relaxers were going to help because my body doesn’t do well with heavy medications. I refused to live in the fog that they caused. My days of ibuprofen around the clock began. During this course, they also diagnosed me with fibromyalgia. Add that to the IBS, asthma, chronic bronchitis, and reoccurring vertigo, and ulcers, that were all diagnosed back in high school, and what do you get? Depression!

I also found out quickly that I have pretty severe reactions to most antidepressants! The first time the doctors began telling me to go on disability, I was the young age of 26 with two small children and there was NO WAY I was going to do that! They also had lots of big ideas about surgeries we could try, which I also refused due to seeing my sister in law go through the same surgeries first hand. I didn’t feel like any of these solutions were acceptable. I just powered through and pressed on. Skip forward to 2013 or so, I was late in my 30’s and had spent the years powering through the pain, now alternating Ibuprofen and Aleve all day, every day just to be able to move, and was getting some intermittent chiropractic care. After one hell of a year full of illness from some rare third world country parasite (entamoeba histolytica) that I somehow contracted, along with a hysterectomy and a total prolift surgery, I decided it was time to do everything I could possibly do on my own to maintain my health. This was the start to my health and fitness journey. I began changing my diet and educating myself on the importance of what we put in our bodies as well as getting in shape and strengthening my core, which is of crucial importance with any type of back issues! It was during this transition of shedding fat, toning up, and growing muscle that I began taking photos of my progress which I quickly developed a love/hate relationship with. This was the first time I really began to physically SEE my deformities caused from my S shaped spine. By this point, the curve was causing my entire rib cage to twist leaving some ribs on one side visibly protruding. My hip bones were crooked, and when bending over toward my toes the “hunch back” on one side had begun. This started a whole new mental struggle with my vanity. I stopped wearing little tight shirts as much, always wore my hair down to cover the top of my back if in a tank top, and became very self-conscious of my disfigurements.

What is your biggest struggle?

My biggest struggle is listening to my body when it is telling me to stop. I have raised my kids and am still young and work very hard to be healthy and physically fit, despite my conditions, because there is still so much that I want to do in life! I love being outside in nature and being active and going on adventures. So often, so many times each and every day, my back is telling me to stop, or my shoulders and neck are telling me to take my hair down and take my bra off because it’s pulling on my muscles. My lower back, hips and legs are screaming to get horizontal to relieve the pressure and it’s so difficult to listen. I don’t claim the disabled title and I do still work and from the outside, people truly have no idea what I am feeling as I push to just keep up with everyday tasks. How do I suddenly stop in the middle of an outing, photo shoot at work, or a shift at the gym and say “I have to stop now.”

What is your biggest accomplishment?

I would say my biggest accomplishment is what I have done to stay strong enough to have raised my littles into bigs and to be fighting like hell to stay strong enough to play with my grand kids when I see them, to carry out my career goals as a photographer, and to go on many more adventures with my husband.

If you had advice for anyone newly diagnosed with your condition, what would it be?

First, drop your vanity and WEAR THE BRACE! I am sure they make them much less bulky these days! Second, start now and never stop strengthening your core. This is so very important. The docs told me early on that the best thing I could do is keep my core strong and also swim thirty minutes each day, neither of which I did until way later into my life. I still don’t swim everyday as I don’t have a pool, but it is a goal. This condition CAN be corrected if caught and treated at an early age of growth. You CAN keep it from progressing as much or as rapidly IF you treat it early on. The only thing I can do at my stage now is just a million different things each day just to maintain and stay mobile. It’s exhausting but it’s necessary.

What are three things you can’t live without?

My loved ones, music, my faith. I wouldn’t want to live without the beach ever again.

Favorite quote:

“Just Be Real”

What inspires you on a daily basis?

Watching how my grand babies are growing into these very active little angels makes me push to keep going so that I can spend more time with them as they grow. Also, seeing the stories of so many other people who have struggles and conditions that far outweigh anything I could ever imagine and how they have overcome and press on. It’s truly amazing what we humans are capable of with the right amount of courage, faith, and desire. Better healthcare would definitely make the fight less agonizing.

Photos by Misti Blu Day

Ra’chelle’s Photography: Majestic Soul Photography

Health, Unveiling Invisible Illnesses

Living With Chronic Pain

What does it feels like to live with chronic pain? It’s something that you never really get a break from and you can’t remember not feeling it.

At the end of a long day, it feels like you just did the most intense workout the night before, and climbed 50 flights of stairs while carrying someone up. Then, you had to swim a mile in the ocean and forgot to stretch, and you were forced to sleep on the pavement. For me, this is how my body feels on a daily basis.

Every single fiber of my being aches and it always has. This is my normal and something I have grown to live with. I still go to the grocery store, cook my family dinner, make it to events and juggle school, parenting and work. I used to never talk about this because I never knew it wasn’t normal to feel like your scalp was severely bruised because you wore your hair up or switched parts, or that your legs weren’t supposed to feel like they were run over by a truck after a day of work, or like you drank a bottle of tequila the night before (only you don’t actually drink) and have a massive hangover. I didn’t know it wasn’t normal to feel like your feet have been shattered into a hundred pieces at the end of the day, or wake up each night with your back spasming, and let’s not forget the classic pounding headache and abdominal cramps.

I have been told in previous relationships that I was a hypochondriac, or always complaining, so I trained myself to suck it up. Who wants to complain all day or succumb to a life in bed? I can’t be in bed too long anyway. This is my every single day. This is me. So, when you see someone or meet someone, know that we are all fighting our own battles. Pain is just one small layer of the onion. Things are not always what they seem.

Photo by Amanda Eversz

Location: Rockledge Gardens

Dress by The King’s Daughter Bridal Boutique & Formal Wear