Tag: lupus

Health, Unveiling Invisible Illnesses

Unveiling Invisible Illnesses with Natalie Rose – Lupus

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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

Health, Unveiling Invisible Illnesses

I Believe You

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When your medical team thinks you are just stressed or maybe have a common ailment and never test you for anything out of the norm, it can be frustrating. You feel lost and alone and just want answers. Sometimes this process can last years!

Up to 12 million people are misdiagnosed each year (1 in 20) and medical errors are the THIRD leading cause of death in the US (CDC, 2006) and kill 150,000 people per year. It is also disheartening when friends and family start to question you and think that maybe it is in your head. I have been there!

I am lucky to have a beautiful support system and people who care about me and I have made leaps with my health care, though I still have much more to discover. Advocacy is so important. Though my hands are tied due to finances and lack of health insurance, I still do a ton of research regularly and do what is best for my health and wellbeing with nutrition, detoxing my body, supplements and cutting out emotional toxins. If you are suffering from anything, I got your back. I am on your side. I am always here. Don’t ever be afraid to reach out.

Health

What is Banana Bag Oral Solution?

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Banana Bag Oral Solution is a specially formulated solution for vitamin deficiencies and dehydration. It is a drink mix and can replace the costly IV from an emergency room visit. The term “Banana Bag” is from the medical field, referencing IV fluids. The drink does not taste like bananas. In fact, it has lemon-lime taste to it. I prefer it to sugary sports drinks that are loaded with dyes, preservatives and artificial flavors. It is also gluten-free.

Banana Bag has been a huge hit for those with Postural Orthostatic Tachycardia Syndrome and also other Dysautonomia patients. It is beneficial for athletes, hangovers, the chronically ill, people with gut issues causing malabsorption and keeping general health issues at bay that are caused by deficiencies and dehydration.

This reliable solution restores the body with electrolytes and vital nutrients. It has been a crucial staple in managing my health, especially living with the Florida heat.

No sweeteners | No preservatives | No dyes | No artificial ingredients | No artificial flavors | No GMOs | No gluten.

Health

Hair Breakage, Hair Loss and Hair That Sucks

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Before you start looking for a miracle shampoo or magical fairy dust online for your vanishing hair, let’s take a moment to dissect this issue. If your hair sucks and it is breaking off and you don’t have over-processed hair then it may be time to see a doctor. No special shampoo is going to fix this. I am going to walk you through some health issues that may pertain to you and guide you to the right tests to request from your doctor. If you have hair breakage or hair loss, you need to get some blood work done. Below is a list of what to look for.

  • Vitamin D Deficiency

Vitamin D deficiencies are actually fairly common. Even living in a sunny state, you cannot always get enough vitamin D. Even if you have a super healthy and strict diet, you still may not be getting enough. For some, deficiencies are caused by malabsorption from leaky gut, celiac disease or other inflammatory bowel issues that can cause damage. Low vitamin D can cause hair loss, infertility, depression, bone pain and a weak immune system. If you are critically low, it may take at least a month to get balanced. It is important to see your levels in case you need a prescription strength supplement. Most doctors do not test your D levels so ask specifically and then get a copy of your labs for records and to make sure. Sometimes, “Everything looks good, you’re fine” or “it’s probably stress” is not true. Check the damn D!

  • Thyroid Disorders

Hair does not grow continuously. It goes through phases. Telogen is the phase where hair is shed and replaced by new hair. It is natural to shed hair and is balanced by new hair. Stress or illnesses can cause the hair to remain in the resting phase while growth temporarily ceases. The human hair cycle is 7 months so sometimes it takes awhile to notice when it becomes a problem.

Hyperthyroidism and hypothyroidism can cause hair loss. Treating a thyroid condition is the only way to help with loss of hair in this case. Also, if a shampoo causes you to “detox” your hair then you should throw it in the trash. I promise it is not normal and your hair won’t grow back tenfold.

Normal hair shedding is 50-100 strands per day. Keep in mind that if you have a ton of hair, you may shed a little more than average. If you have not brushed or shampooed your hair all week, you may shed a little more when you finally do. Everyone has their normal. If your normal changes then it is a sign that something is going on.

  • Autoimmune Disease (Lupus)

Autoimmune Diseases are unfortunately not understood enough by doctors. Hopefully, in the future we will have more research and more answers but at the moment, a lot of doctors do not really understand how they work. Rheumatologists typically handle autoimmune diseases. If you are suspicious that you have an autoimmune disease, ask your primary care physician for an ANA blood test, which tests antinuclear antibodies. If you are ANA positive you can then be referred to a rheumatologist. However, most rheumatologists just prescribe. No one seems to wonder WHY is my body freaking out and attacking itself? I personally believe autoimmune diseases are caused by something such as Lyme Disease, malabsorption due to intestinal damage, Epstein Barr Virus, Deficiencies, etc.

  • Leaky Gut

Malabsorption due to intestinal damage, a messed up gut biosphere from processed foods and overprescribed antibiotics, alcohol, sugar, too much bad bacteria and less good bacteria are a few reasons to throw off your gut balance. Do I sound like a broken record? I am sorry, but you are reading this for a reason, right? Think about it… food is nutrition. We eat food and our bodies function from the vitamins and minerals in our food. For example, potassium (found in bananas) helps our heart rhythm. Muscle spasms? That is magnesium. No energy and a headache? Vitamin B. Food helps us function and we are literally putting garbage in our bodies. While you choke down your McDonalds cheeseburger, bag of Doritos, Diet Coke and Zebra Cake, you are filling your veins with sugar, preservatives, aluminum, dyes, artificial flavors, and whatever other fillers and junk that are used to make a cheap snack. Then, we bitch about achey joints and a headaches. Get your body right and treat yourself to the self care you deserve, which is nutrition.

  • Iron Deficiency – Anemia

Being anemic will certainly cause hair loss too. Brittle nails, headaches, lethargy, restless leg syndrome are a few other symptoms. This is a condition in which blood lacks adequate healthy red blood cells which carry oxygen to your body’s tissues.

  • Hormones

Before you try any “magical” shampoos, know that red clover can mess with your hormones, especially if you already have hormonal issues. Dihydrotestosterone (DHT) is common with male pattern baldness by shrinking hair follicles. Women’s hormone levels decline as menopause approaches. Men have their peak hair period at the age of 17 and women at the age of 19 and it goes downhill from them.

Now that we have learned a little about the ROOT cause of hair loss (pun intended) we can try to correct these issues and get healthy. I also suggest Biotin for hair help and Vitamin C, which helps with collagen production and our immune system. It also takes time for our body to get in balance so a 30 day program or fad diet will not suffice. It is a lifestyle changing, habit breaking zone you need to get in. Inflammation causes hair loss and our bodies are inflamed from the many inflammatory things we consume. Stay hydrated, eat clean, check your blood work and treat your body right.

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

Day 5 Postoperative Pacemaker Update 

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The past couple of days have been rough.  I have had sugar the last two days when I felt worse so I am hoping eliminating sugar again will help. I usually don’t have sugar in my diet but caved and had some dairy free Ben & Jerry’s almond ice cream. Basically, I have been having PACs, which feel like extra heart beats and bouts of Inappropriate Sinus Tachycardia. I have had these issues prior to the pacemaker that I just got on June 8th (2017) but was unable to take medication due to chronic Bradycardia, a slow heart rate. Now that I have the pacemaker as a safety net, I am able to take medication to help with the other issues. At this point, I have to wait 6 weeks to let the pacemaker fully heal and the meds to kick in and then we can re-evaluate the situation and discuss a possible Cardiac Ablation, which would be my 5th. I would then be 100% paced. I am trying to be positive and hope that avoiding sugar will help calm things down and that my heart is just angry and still needs to heal and adjust. In these last two days I have had PACs every single minute, sometimes more, sometimes less and about 5-10 episodes of Inappropriate Sinus Tachycardia (IST) each day. The IST will kick in randomly, often when I lie down from sitting up. My heart rate goes from 60s to 140s in seconds and my chest feels tight and constricted while my lips get cold and tingle or go numb. It is VERY uncomfortable and annoying, to say the least. The PACs sometimes will feel so strong that they jolt me out of bed. 

 I saw the doctor today and am still paced in the 80 percentile and they were surprised to see how often it kicked in. When my heart rate was higher from walking or with activity, it would have dropped and I could have passed out had the pace maker not been there. That is called Neurocardiogenic Syncope, which was confirmed in a Tilt Table Test I had a few weeks back. I am suffering from Dysautonomia but have not found the right doctor to determine why. I am currently trying to find a good rheumatologist to look into a proper diagnosis. Most signs point to Lupus (SLE) but nothing is set in stone. I definitely can tell how beneficial this pacemaker is and a life changer at that, I just really need to get the the bottom of what is causing my body to suffer. 

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I guess I just get worried because I also have had open heart surgery in 2011 for severe Aortic Insufficiency. I had my valve repaired and currently all 4 valves have mild insufficiency. I also have thickening on my aortic valve and a thickened heart muscle with slight left ventricular enlargement. With all of this and an undiagnosed auto immune disease, I sometimes have a hard time keeping my chin up. I also have recently discovered that I have multiple complex cysts on my thyroid, which will need to be biopsied for cancer. 

Never take your health for granted. It is really tough being patient and waiting AND WAITING for answers. In the mean time, I am home in bed and away from my salon. I would love to be back to work and travel and run around and feel free again. I am currently trying to get disability so that I can ensure medical coverage (since there will likely be billions of dollars in cuts for Medicaid) and qualify to go to the Mayo Clinic so that I can get the proper care and treatment that I have needed for a decade or so.

I think that is all for now. Rubix cube still being solved. To be continued….

Health

CBD Oil: Who, When, Where, Why, How?

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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.