Health, Unveiling Invisible Illnesses

Unveiling Invisible Illnesses – Endometriosis

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Laura Kay Halcom from Rockledge, Florida is 1 of 10 who struggle with endometriosis, a painful disorder in which the tissue that grows on the lining of your uterus spreads to other organs like the fallopian tubes and ovaries. With no way to exit the body like normal menstruation, the tissue becomes trapped and causes pain, scaring, adhesions and fertility problems.

Endometriosis is difficult to diagnose without an invasive procedure, a laparoscopy. Often times it will be misdiagnosed with IBS or deemed psychological. Symptoms can range based on severity but can cause nausea, low grade fevers, heavy bleeding, lower back pain, pelvic pain, painful intercourse, painful bowel movements and fatigue.

Treatment usually starts with birth control hormones to try to regulate your cycle but unfortunately, some women are very sensitive to the hormones and don’t always respond to that treatment. Another option is an endometrial ablation, but it is not always suggested if you plan to have children. A hysterectomy is a final option but there are studies that it still is no cure and it is a rough surgery. If your endometrial tissue grows onto other organs, removing the uterus is not going to help. There are studies that nutrition can play a big role. An anti-inflammatory diet can help minimize symptoms.

Avoiding gluten, red meat, sugar, caffeine and alcohol can help alleviate symptoms and inflammation. Having a well-balanced diet full of nutrients, antioxidants, fatty acids and iron rich foods is important. Turmeric is a natural anti-inflammatory compound that you can take as capsules or sprinkle on your food. Having plenty of rest, staying hydrated and support will be your best friend for this diagnosis.

Meet Laura

What is your invisible illness?

Endometriosis, Depression, Anxiety

When and how were you diagnosed?

Endo: June 2017 by laparoscopic surgery. It took 12 years and dozens of tests for me to be diagnosed. I have had anxiety & depression since I was 16.

What were your struggles and fear after diagnosis?

There is no known cause, and no cure. Now, the treatments of birth control and antidepressants are just making things worse. I also fear infertility.

What advice do you have for anyone going through a new diagnosis?

Be patient with yourself. Keep records of everything. Find your community of people struggling with what you are fighting. Talk about it. Educate yourself so that you can educate others.

What are your goals and dreams in life?

My goal is to finish my business degree. I want to be an educator and an entertainer. I dream of my own business, where I can express myself through art, music, and nature. I dream of adventure in far away places.

Three things you cannot live without: Sunshine, hugs, and my heating pad!

Favorite Quote:

“What would you attempt to do if you knew you could not fail?”

Endo Warrior Shirt

Health, Unveiling Invisible Illnesses

How To Be There For Someone With A Chronic Illness

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Imagine you have two people who are not on the same page, let alone the same book. One struggles with chronic illness and the other is averagely healthy and maybe even deals with a common ailment here and there, but how can they relate when it comes to health? It may not come easy to some when they have never had their health jeopardized. It is important to build a bridge to have a connection with your family or friend.

Invisible Illnesses

Perhaps your friend or loved one has an invisible illness. This means that they look healthy on the outside but on the inside they struggle with an illness like diabetes, lupus, PTSD, POTS, Thyroid diseases, Cardiac and Neurological diseases, to name a few.

We all have our own battles.

It can be tough to look at someone who looks fully capable of living life the way you do but we are all different. Understand that just because you may be healthy and can juggle so many tasks, does not mean it comes easy for others.

It is important to recognize that with all things, there is a spectrum. With chronic illnesses, that spectrum can vary day to day. One morning, we may have so much energy that we can clean the house and go out to get lunch but the next morning we may be bedridden.

Personally, putting on makeup every day is my way of putting on war paint. I hide my dark circles from waking up every hour. I conceal the redness in my face or sometimes add blush to my pale skin. When I look well, I don’t get asked if I am sick or told I look tired. I feel normal and ready to take on the day.

Just because you friend or loved one looks put together and seems young and healthy, doesn’t mean she wasn’t up at 4am with severe back spasms and again at 5am feeling dehydrated and again at 6am in more pain and a numb arm until it is finally time to get up for the day. She probably got dizzy a few different times while her blood pressure dropped, causing nausea and tachycardia. Be grateful she answered the phone or showed up for lunch and she we be grateful for you.

The Spoon Theory

The Spoon Theory is a metaphor to explain the limited energy that someone with an invisible or chronic illness struggles with. Say you get 12 spoons each day and each task costs a spoon or two. Sometimes a shower can cost 2 spoons on a rough day. Going to work can cost a lot of spoons as well. Cleaning the kitchen? That will be 3 spoons! Sometimes if you push yourself too hard, it costs spoons from the next day which will leave you in bed with limited spoons.

We call people “Spoonies” who fit in to the Spoon Theory.

How to be there for a Spoonie:

  • Understanding – The fact that you have read this so far is already a huge deal for your Spoonie. Trying to understand what life is like for your friend or loved one shows a lot of compassion and empathy. This is your biggest step and the most important. For some, we are constantly judged, assumed we are lazy, told it is in our head, called a hypochondriac or just straight up dismissed. Certain medical conditions sometimes take up to a decade or longer to get diagnosed. Often times there are several misdiagnosis’s and even people get left in a grey area where no one knows what to do. We feel alone and lost.
  • Keep Your Ideals To Yourself – We appreciate your concerns, absolutely. I can vouch for myself that I have done plenty of research, am fully aware of my body and what is normal for me, have a strict diet with optimal nutrition and supplements, non drinker, non smoker and always staying positive as well as seeing a therapist. My health is a full time job. You can’t even pronounce what illnesses I have so please don’t try to cure me. Of course, we appreciate advice but keep it simple and keep it at that. Do not try to push your ideals on someone or tell them if they exercise more they will feel better or that they can meditate to a cure. All we want is a shoulder to cry on, a listening ear, positive vibes and understanding.
  • If You Are Sick, Stay Away! – Seriously, some of us have compromised immune systems and if you have a cold or flu and bring your germs to anyone, even a healthy person, it is just simply rude. If you bring your germs to someone who is already ill, it is cruel. We don’t fight infections and other illnesses very well and most of the time it makes our other issues worse and for some, it could mean a trip to the hospital.
  • Social Gatherings – There is a good chance we might not make it to your event or night out. I can assure you that we wish we were there but more often than not, our health makes us flakey friends. Please don’t stop inviting us! We will always try, even if the chances are slim. Also, please don’t get upset with us if we don’t make it. We would rather be out having fun with you than stuck in bed.
  • Know That We Are Fighting A Battle – If we seem a little off, let us be a little off. There are countless times when I was hanging out with someone while my vision blurred and I start seeing stars, getting light headed and heart palpitations but I push through because this is my normal life. Something that has always bothered me was when strangers, coworkers or peers say “Smile! It can’t be that bad!” Well, maybe I am struggling with an ocular migraine that day, low blood pressure or didn’t sleep well, so if I have a case of resting bitch face then let it be. I know it could always be worse but I am here, smile or not!
  • My Illness Does Not Define Me – I am a strong warrior. I love art, music, travel, culture, anything vintage, food, nature, giving back and being creative. I can be sensitive but I persevere and I keep my chin up. I have not given up and I won’t. I have bad days but I climb above it and stay positive, even it it is a full time job. I am not my illness. However, it is part of my life, whether big or small. It may affect me but it is not who I am.

Health

The Bendy Life – Ehlers Danlos Syndrome

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Ehlers-Danlos Syndrome is a group of inherited disorders that weaken connective tissues.  Connective tissues are proteins that support skin, bones, blood vessels, and other organs.

My childhood consisted of chronic stomach issues with pain and constipation, never ending growing pains, Supraventricular Tachycardia, easy bruising, joint hyper mobility, sleep disorders, chronic fatigue, abdominal wall hernia, autonomic dysfunction such as temperature and blood pressure regulation, headaches, frequent urination, mouth ulcers, heat intolerance, just to name a few!

I could pop my hips out of place like it was nothing. I could twist my arms over 360 degrees and freak people out. Once, I bent my arm around in my physical education class and showed the teacher, asking if I could see the nurse. I often tried getting out of gym class due to my heart rate in the 250 bpm range from Supraventricular Tachycardia (SVT) that did not get discovered or diagnosed until I was 15. So, I am in 3rd grade and when the teacher sees my arm, she was horrified! Guilt set in and I instantly said I was kidding and ran off.

I was also an expert and hide and seek. I could bend and fold into any tiny space and would always hear everyone give up on finding me because I would fit into such unexpected places.

When I got to my teens, you can also add that I had sleep paralysis, migraines with aura, vertigo, dizziness, POTS, adrenal surges and crashes, sleeping in school, ADD, brain fog, endometriosis, Inappropriate Sinus Tachycardia, depression, IBS, MCAS, and anxiety.

However, I was a healthy young girl. Everything was missed and overlooked because this was all normal to me and having such a rare disease is always too far outside of the box for most doctors.

It was not until I had 4 cardiac ablations, 1 endometrial ablation, 1 open heart surgery for aortic valve repair and a pacemaker for neurocardiogenic syncope and sick sinus syndrome, hundreds of ER visits and dozens of hospitalizations later that I got diagnosed with Ehlers-Danlos Syndrome. After desperation and never any answers, I was the one who asked the doctors to diagnose me after I stumbled upon this rare diagnosis from research and from my Mother in law suggesting that I look into it. My entire life I was told that I was young and healthy and a hypochondriac. When I saw the Beighton Score and had 8/9 I knew this was me. This all finally made sense. Then, I presented it to my doctors. 33 years.

My goal for this blog is to share my story and daily life hacks and struggles. I want to support others and inspire people to advocate for themselves. If I did not research and push for tests and get copies of my medical records I would still be lost because no doctor took the time to dig and most won’t.

When they hear hooves, they assume it’s a horse but rarely it is a zebra. We are the zebras and we need to raise awareness for EDS so that we are not dismissed anymore. We are in an unfortunate gray area in the medical field where we have no specialist to go to, just multiple doctors for each of our many  ailments and most doctors have to google it.

I plan to have many more blog posts on specific health issues that come with EDS and to share as much information as I can.

Health

Ehlers Danlos Syndrome and Unusual Sounds

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Tensor tympani is a muscle within the ear that reacts to sudden loud sounds.  It tenses to reduce the volume of sound when you chew food and tone down the sound of your voice when you speak. When it works properly, you aren’t aware of it, however, when you have  Tonic Tensor Tympani Syndrome  you can heart thunder, tapping, hammering or gun shot type sounds.

Symptoms include:

  • Fluttering sensation
  • Muffled hearing
  • Fullness
  • Balance problems
  • Tinnitus
  • Pain, numbness or burning
  • Headache
  • Vertigo

I have never been able to tolerate yelling. If someone raises their voice near me for too long it drives me crazy because I hear a hammering sound after each word. Sometimes large crowds or a loud group of people can be exhausting and I feel overstimulated. I sometimes find myself recovering from the day in a silent room.

Now that you have a better understanding about the clicking sounds in your head, you can follow up with an ENT specialist or talk to your doctor. I take CBD oil to stay relaxed and I am looking into acupuncture soon. I am just mostly relieved to know that I am not crazy and that my entire life is starting to make sense. I would love to hear your story!

Body and Beauty, Health, Unveiling Invisible Illnesses

Yoga Newbie

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One of my many goals for the new year is to stretch more. I am in severe pain every single day and last year I did absolutely ZERO exercising. It is a challenge to do any workouts due to my heart condition but I hate the idea of getting weak. One of my amazing Wildling Apothecary homes is The Yogi Perogi in Melbourne, Florida. I thought, what a perfect way to support them too, while working on my goal to stretch and hopefully reduce the pain in my body.

As a yoga newbie, I felt that Amy Ustjanowski lead the class so seamlessly. I started with the Vinyasa Flow, which she recommended. I did avoid a pose or two since my pacemaker is in an odd location and causes pain still. There was no judgement and no feeling awkward with my lack of experience and knowledge. I felt fairly out of shape but any time I started to worry, she somehow was a step ahead of me telling us not to. I realized that yoga is also something that will strengthen your body but most importantly, remind you to breathe. As silly as it sounds, I never remember to breathe.

I definitely enjoyed the class and plan to try many more. Koah does a Rock n Flow class on Saturdays with live music! I think it is always very important to challenge yourself and to try something new. I also want to be more aware of breathing… inhaling and exhaling. Though it is autonomic and something that you just do, I realized that I don’t do it right. Letting go of the stress in your body and taking the time to rejuvenate is something that has never been a priority until now.

Health

Invisible Illnesses Unveiled – Major Depressive Disorder

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This year I have decided to speak up and share my story in hopes that I can break stigmas, knock down walls, inspire others to take their health into their hands by advocacy and research, to help others realize that they are not alone and to grow from all of this.
I finally started seeing a therapist for the first time and was officially diagnosed with severe Major Depressive Disorder. Not mild but SEVERE! I was shocked. However, it is time to acknowledge this and do something about it. It is real and it exists and ignoring it will not make it go away.
Throughout my health journey, I had decided to look into my genes. One of the genes I carry is SLC6A4, a type of monoamine transporter protein that transports seratonin. This provides a lower rate of response to SSRIs (antidepressants). Genetically speaking, this affects individuals when experiencing stressful events in their lives and their cortisol response. Cortisol is a hormone that your body produces to respond to stress. This particular gene is a risk marker for Anxiety, Depression, OCD, PTSD,  Alzheimers and even Autism.  For those who have alcoholism that “runs in their family” actually have association with this gene variant. These are all reason why I feel that EVERYONE should be tested genetically to know what you are predisposed to for preventative measure as well as proper treatments due to certain genes causing resistance to treatments.
Here I am at 33 and finally dealing with something that I saw signs of in my early childhood. Mental health has always been wrapped in shame and stigmas which make it hard for anyone to accept and even wrap their head around. When I felt down and depressed, I did not ever think of it as a chemical imbalance or a disorder. I thought of its as insecurities and a lack of self worth because I truly believed that I was worthless. Now, I have the ability to check myself and remind myself that I am not worthless and that I am having a depressive moment that will pass. I know that this is a never ending effort on my end to continuously work on. I am so sad for the young girl, teenager and young woman that I was. She did not realize that it was a dark cloud blurring her view of the world and that she could take a deep breath and wait for it to pass. Instead, the stigmas and closed doors made her feel alone as she spent her entire life suffering.
Opening up about mental health is incredibly difficult to do. People judge, form their opinions, label you, make assumptions or just completely shut down. For example, I opened up today to a friend about my recent diagnosis and how it was never real to me and what I was feeling with this new acknowledgement and the subject was changed as if I never even spoke of it. When you open up to someone about your health and it gets dismissed you feel like you cannot trust or open up to anyone. However, I knew I could let that go and move on and find the right friend who would understand and listen. Maybe not everyone is cut out for it but I hope to make others aware of this epidemic of depression which takes so many lives. If you are a friend or a person that someone chose to confide in but don’t know how to handle the situation, direct them to someone who can. Dismissing them or ignoring the issues may cause them to feel more isolated.
Mental health disorders are another form of invisible illnesses. When people meet me, I smile and am generally friendly and most people would never guess I battled depression my entire life.
I can’t even fathom to explain how much I can’t stand when a complete stranger says, “Smile! It can’t be that bad!” I like to suggest that if you are that type of person, say something else like, “I hope you have a great day” instead. Those are the little things that make our head sink less.
My advice to anyone in a relationship with someone who struggles with depression is that you have to be patient and when they isolate themselves or push you away, keep a close distance instead so they get their space but don’t feel more alone. We never want to push you away, we self sabotage because in that moment we truly feel like you are better off. My husband always reminds me that it will pass and we even came up with a code word. Communication is so valuable. Always discuss these moments and how you can work through them better next time.
If you are the depressed one in the relationship, you need to be patient as well. They do not understand but they are loving enough to try, so bear with them and listen to them, no matter how stubborn as you can be. You have to do the work. You have to read the self help books and go to therapy and try or their help and support is going to be useless for you. No one can save you besides yourself. This is your battle to fight even if you have people on your side. If you feel like you cannot manage or handle your depression then do not be afraid to seek help. Some people do not know what to do or how to handle a situation, so finding local resources is recommended for more professional help.
There are people who are prisoners to their own mind. I am fortunate to have found a way to cope and get through my depression, but for those who have not can fall into a colossal traumatic, dark hole that may lead them to hurt themselves or others. There is a spectrum for everything, from mild to severe and everyone copes differently but as a community we need to open our eyes whether it is to seek help for yourself or know where to point someone to if they turn to you for help.
Body and Beauty, Unveiling Invisible Illnesses

Invisible Illnesses Unveiled – Plantar Fasciitis

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Yvonne is a ray of sunshine and you wouldn’t dare look at her and think that she was suffering. She is struggling for answers and remedies while trying to piece together her life around a disability. Meet Yvonne!

Where are you from originality?

I am from Jacksonville, Florida and I was adopted at 3 months old.

What is your dream for you and your career?

The ability to get back up and fight through battles is what inspires me. Women who empower women and encourage one another and lift another up also inspires me.  My dream is to continue to help others feel wonderful about themselves and to offer the best quality organic products and airbrush tanning at it’s finest!

What is your favorite music?

My favorite music is county believe it or not lol…. I love “feel.good soul music ”
What inspires you?

What are three things you can’t live without?

I can not live without my daughter! She is the reason why for all that I do. I can not live without putting a smile on someone’s face on a daily basis. It feeds my soul to do good deeds!  I can not live without lipstick… I LOVVEEEE LIPSTICK and coffee!

Favorite quote:

There is only one happiness in this life. To love and be loved.

Tell me a little about your injury and daily battles:

My injury occurred several months ago.  I have a severe case of Plantar Fasciitis. I have been a dancer since I was three years old and that has become a passion of mine as it’s in my heart and in my veins! I have been teaching dance aerobics since I was out of high school. To be a dancer and to loose your feet and feel prisoner to them is the last thing I thought I would ever have to go through. I do not want to get out of bed and take the 1st steps as I know how painful they are. Throughout the day as I walk, it’s a struggle just to to stand. The only relief I get is if I sit, so I almost want to be in a wheelchair as hard as that is to say. Excruciating pain does something to you… I feel as if it has stripped my soul in my passion.  I get depressed very easily and cry a couple times a day. As much as I want to cut them off of my body,  I tell my feet I love them with every step I take no matter how much they hurt me and also how badly I want to remove them from my body. I pray that the feet I once knew come back to me soon as each day feels like an eternity when you are struggling to walk.

What is some advice you can give to anyone suffering?

My advice for anyone suffering is to breathe deep breaths and lean on your loved ones as much as possible. If they love you, they got you! Cry it out, and get back up again. I pray… A LOT! I try focus on the positive things that God has given me instead of dwelling in the darkness of this pain, even though at times it does get to me and I do break.

What helps with your issue?

My family helps me with my issue even though they don’t understand it. No one will understand if they’ve never experienced it, but it helps when you know you have people that truly care about you, that love you and want what’s best for you and your healing. There is truly nothing like support when you’re suffering. Pain this intense messes with you mentally as well.  Family is always there to hold you and help you get through it!!!! Also, the beach or sitting outdoor helps me clear my stresses.

Support Yvonne’s local business here:

Yvonne’s Organic Bronze