Health

Ehlers Danlos Syndrome Awareness Month – You Don’t Look Sick

May is apparently everything awareness month, so today I chose to share a little bit about Ehlers Danlos Syndrome. In the medical field, doctors are trained that when they hear hooves that it is always a horse and never a zebra. The zebras in the world are standing up and wanting answers. We have been dismissed all of our lives. It is so important to me to educate everyone I meet in the medical field so that they can keep an open mind and empathy for those who suffer without answers. 🦓

Photo by Nicole Borges Photography

Health, Unveiling Invisible Illnesses

How To Be There For Someone With A Chronic Illness

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

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, Healthy Food

Invisible Illnesses Unveiled – Celiac Disease

Celiac Disease is an autoimmune disorder in which gluten ingestion can cause damage to the small intestine and other long-term health issues. 

Theresa Lanno is a hairstylist and my business partner at Bombshells Barbershop & Glam Lounge in Rockledge, Florida. We busted our asses to open our salon. Stress can do a lot of things to our bodies. Theresa was rapidly losing weight without trying. She was coughing up blood and having stomach issues. The first doctor she saw gave her ulcer medication and chalked it up to stress. Can you imagine if she just took those pills and did not push for further tests? She would be damaging her body for many years to come and suffer from more health issues. Many autoimmune diseases are a dominos effect on your health. 

 Long Term Health Effects

Celiac disease can develop at any age after people start eating foods or medicines that contain gluten. Left untreated, celiac disease can lead to additional serious health problems. These include the development of other autoimmune disorders like Type I diabetes and multiple sclerosis (MS), dermatitis herpetiformis (an itchy skin rash), anemia, osteoporosis, infertility and miscarriage, neurological conditions like epilepsy and migraines, short stature, and intestinal cancers. 
*Read more here.

 

Theresa also had a vitamin D deficiency, which can cause brain fog, bone pain, fatigue, depression and muscle weakness. Deficiencies are common with celiac disease. Gluten is a protein found in wheat and 1 in 100 people overreact to this particular protein, which damages the villi in their small intestines and causes poor absorption of food. Malnourishment can eventually lead to infertility, miscarriage, bone density loss, neurological diseases and certain types of cancer. 

Fortunately, the cure for celiac disease is to completely cut gluten out of your diet. My goal in unveiling invisible illnesses is to push others to be their own advocate and to get answers and not just accept the first guess a doctor quickly throws at you before their next patient. We want answers and and test as well asnproper treatments and not bandages or pills to mask our symptoms. 

Even if you are not Celiac, gluten sensitivities can cause similar issues minus the intestinal damage. Gluten has been know as an inflammatory food. You can read more here about research and references. 


*Photos by Misti Blu





At what age did you discover symptoms and how long did it take to get an official diagnosis?

Theresa: I found out I have Celiac disease in April. I’ve always had stomach aches and low energy.  I never thought anything of it until the past two years when my life got miserable. I couldn’t eat or drink with out feeling sick. I would get migraines, nausea, dizziness,  heartburn, brain fog and joint pain, which ruled my life. 

How do you feel about the healthcare system? 

Theresa: The healthcare system is very flawed. I went through tests for 2 years before getting a diagnosis. Every doctor said I was young and healthy with low vitamin levels & stress. I lost 20 pounds in 2 months. I knew it was something else and not just stress. Thankfully, after many different doctors, I went to a walk in clinic begging for answers. They finally sent me to a gastroenterologist. Even after going through all my tests it took over a month to get a diagnosis. Celiac disease isn’t very common and many doctors still don’t have knowledge about this disease, which is so frustrating. 

Do people have a hard time understanding your illness?

Theresa: Yes!  The worst thing about this disease is that the only way to feel better is by sticking to a strict gluten free diet. Cross contamination is a nightmare, which makes eating out almost impossible. Also, people use gluten free as a fad diet which makes restaurants not take it seriously. I get asked if my body’s intolerance to gluten is “a choice or an allergy.” Why anyone would make this choice for no reason is beyond me. Gluten free is not a fad, actually gluten free breads and sweets usually have more sugar and calories than “regular” things do! 

Do you have a message for people in your shoes who are struggling with this illness?

Theresa: It gets easier! The cravings are part of the disease. Be strong and don’t give into cravings. Celiac disease is strongly linked to cancer, MS, neuropathy, and diabetes. It’s no joke and there are so many people out there who feel the same!

What do you miss the most from before your diagnosis?

Theresa: I miss having a normal dinner with my friends and family.  I was such a foodie! I still am but it’s just harder now.  I don’t want to be the person who asks the waitress a million questions or has to fear getting sick from a chef’s negligence or server error.  But, most of all I miss real New Haven style PIZZA! 
What is your new favorite (gluten free) dish?

Theresa:  I have learned to make almost everything I loved before in a gluten free way. My favorite thing has been chicken parmesan! Barrilla makes the best GF pasta! I love Boars Heads deli meats for lunch and Goodie Girl Cookies are the shit for snacks! Sweets are my weak spot, and the Melting Pot has the best GF spread you will ever see! 

How have you changed or felt since your diet change? 

Theresa: All in all, the sucky diet is so worth the change. I feel so much better. I am down 20 lbs all together.  I still have days where my energy sucks and everything hurts but that is part of the autoimmune thing. No more crippling migraines or joint pain. It sucks sometimes but it could always be worse!

Health

CBD Oil: Who, When, Where, Why, How?

Who?

Anyone can try CBD oil. Even kids and pets! CBD oil is safe and has been used medicinally for decades. CBD provides the medical benefits of the marijuana plant without the psychoactive effects and high produced by THC. 

Here is an example of a case study of a young girl with PTSD from sexual abuse: Pediatric Anxiety And Insomnia

CBD can be used for PTSD, insomnia, anxiety, menstrual pain, migraines, nausea, inflammation, IBS, Chron’s, autoimmune disease, arthritis, fibromyalgia, and much more. It is my go to for all of my ailments. 

What?

Cannabidiol, also known as CBD,  is a cannabinoid in cannabis. CBD makes up 40% of the plant extract. It is the second most medically beneficial cannabinoid, after THC. CBD can actually counteract the psychoactive effects of THC. 

When?

What I love about CBD is that I feel like I am in control of my symptoms instead of my symptoms controlling me. Most medication are taken every 6-8 hours, have side effects, can be addictive, cause withdrawals or long term effects such as damage to your liver. With CBD I can take it whenever and as needed. For example, the other day was very rough for me. I had a splitting headache, intense nausea, felt like I had just fallen from a three story building and increased heart rate. I felt aweful. I had doses every few hours or so and made it theough the day. Some doses even back to back. You could NEVER do that with pain medication or most medications. Then, I have days that are not so bad and might just skip doses all day and have one dose in the evening. 

Where?

CBD is legal in all 50 states as long as it meets the requirement of containing no more than 0.3% THC.  

Follow Blu Dream Health Collective on Facebook for more information or subscribe to this blog for updates and how to purchase CBD oil. 

Why?

There is a High Times article on 10 Little-Known Uses For CBD states that CBD can curb nicotine addiction and also help with acne. CBD is a huge anti inflammatory! Washington Post has plenty of doctors stating the anti-cancer properties and powerful positive effects for epileptic patients. Cannabis can suppress a hyperactive immune system and lower inflammation, which are two important concerns in Autoimmune Diseases.

CBD is safer than aspirin. There are overwhelming studies that prove just that. Medical cannabis has never killed a single patient. 

How?

CBD can be vaped, ingested transdermally, sublingual or in edibles. There are capsules, creams, salves and so on. I strongly suggest that you do your research and get the best product available. I only use Fountain of Health CBD because it is Colorado grown, non-GMO, vegetarian, alcohol-free and coconut oil base. Many companies do not even list their ingredients. This is also the highest strength for the best price available on the market. I carry the 1/2oz size in my shop and online store [link available soon] and it is 1,000mgs. You only need 2-5 small droplets under your tongue (sublingual) and it takes effect within minutes.