Health, Unveiling Invisible Illnesses

Coronavirus Hype or Not?

It must be lovely to be a healthy individual during a health epidemic such as the Coronavirus COVID-19. Those in general populations may be at a lower immediate health  risk; however, those in larger populations with international locations, such as airports, may have an elevated risk. Elevated risks also include those who are in the healthcare industry and those who have family or friends that have recently traveled. The Coronavirus is an infectious respiratory illness that has symptoms similar to the flu, yet it is a different virus.

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Photo by Anna Shvets on Pexels.com

Yes, the flu does have a significant amount of cases and deaths in comparison to the Coronavirus, though numbers are dramatically increasing. Many healthy people will exclaim that they “don’t buy into the hype.” Media can create hype to increase website traffic and viewers. Hand sanitizer and protection masks are sold out everywhere online.  People become scared and start to panic. The smartest thing you can do is always just be a little prepared in general, epidemic or not. Make sure your medications, water, nonperishable foods, and other amenities are stocked to avoid contact in high traffic locations. Unfortunately, when you go out to eat at a restaurant or retail location, most employees are not able to call out sick if they are short staffed. Decreasing your chance of  exposure is one thing, but if you are sick, please avoid exposing others.

What healthy individuals fail to consider is that a flu may knock them on their ass for a few days or weeks, but they get over it. They continue to go to the store, to work, the gym, out to eat, etc. They continue to spread the virus to an unsuspecting passerby that may have a compromised immune system. This person already feels like they have the flu 24/7, 365 days a week. A simple flu could put them over the edge and kill them. So may be you are not buying into the hype and you’re be cool as a cucumber, at least just consider others.

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Photo by Pixabay on Pexels.com

Hand washing is claimed to be the hope and savior for preventing illness, but it’s not going to do shit in reality, so stay home. Viruses are typically contracted through droplets up to six feet away, being inhaled into the lungs (CDC). Washing your hands is very important since the virus can remain stable on surfaces for days and enter your body just simply by you touching your eyes or nose. The virus can attach itself into the epithelial layer that lines your nostrils and other inner cavity surfaces. According to WebMD, you are contagious from 1 day before symptoms occur to up to 7 days after you feel sick. We are talking an entire day (or longer) before you even realize you are sick that you are spreading germs, and then again for the rest of the week. For someone who could potentially die if I contract the flu or Coronavirus, I not only have to worry about the common seasonal flu that is rampant this year, but a double whammy: another virus. Though you may not be worried about the Coronavirus per se, factor in the number of hospitalizations and deaths from the flu as well. I would say when you factor in both deadly viruses, we should worry a little. Numbers add up.

Once again for those in the back: if you are healthy, good for you. Please keep those who are not into consideration. Remember that invisible illnesses exist. There are people like me who are not elderly or obviously compromised. There are people with heart conditions, autoimmune disorders, diabetes, weakened immune systems and other chronic health issues that may not be apparent to you, hence the term “invisible” illness.

Hype or not, it’s kind of a big deal.

 

 

Shop Sick AF Loose Herbal Tea for immune boosting benefits

Health, Unveiling Invisible Illnesses

Holistic Vs. Modern Medicine

The ongoing argument forever continues as people debate which is better: holistic or natural medicine? Supplements vs. medications, surgery vs. a holistic approach. Which is the best? The seas part and divided we stand on either side, just like a political preference or religious choice. The sides argue with one another. il_794xN.2012082761_8020

As someone who owns an apothecary shop that offers herbal tea, CBD, and other natural products, I can say that the natural approach is always a great start. However, I don’t strictly preach one side or the other. I believe in the balance of all things. Sure, too much of anything can be damaging but that also includes nutrients. Did you know there is a such thing as nutrient poisoning? Many people are quick to blame everything on lifestyle choices but nothing is ever a one-size-fits-all, including health. Eating a raw vegan plant-based diet or starting a yoga regime is not going to fix a congenital heart defect.

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Lifestyle choices can and will impact your health. There is no doubt about that. However, I am sick and tired of that being the sole blame of having health issues. Ableist behavior typically stems from a healthy-ish person who can’t relate or wrap their narrow mind around the idea of someone being chronically ill.

“Maybe if you started working out.”

“It’s probably just stress.”

“Have you tried ________?”

“You’re always complaining about something.”

“You’re a hypochondriac.”

“Have you tried keto?”

“Maybe it’s all in your head.”

“Just be positive.”

“Heal your childhood trauma.”

Thanks to modern medicine and advances in technology, my quality of life has improved drastically. I have a dual lead pacemaker and I take three heart medications. That’s right… I take pills. I am thankful for them. I also take supplements, vitamins, eat clean, and stay hydrated. I also get IV saline infusions in the summertime for hypovolemia to help with dysautonomia. I am thankful for my hysterectomy, pacemaker, four cardiac ablations, and open heart surgery. I tried the holistic approach but it’s not a cure for me. Don’t shame others for not following your views. I am the balance of both worlds with medicine, herbs, surgery, and supplements. Just because I take medicine does not mean I am not taking responsibility of my health.

Stop pill shaming. This toxic berate makes vulnerable people feel shame and guilt about their health as if they aren’t trying hard enough or that it’s their fault. I am sick of the words: truths, journey, healing. Not everyone gets to heal. Some of us are just trying to survive. I commend those who can make a few lifestyle choices and hit the gym to become a new person. However, the shoe that fits that person, pinches another.

Just be open to what you don’t understand. Be supportive. Keep your unsolicited opinions to yourself.

 

Health, Unveiling Invisible Illnesses

What “I’m Tired” Really Means

When someone with a chronic illness says they are tired, it is not the equivalent to when you work a long day type of tired. It’s not the same as you not getting enough sleep last night type of tired.

Fatigue for someone who is chronically ill is much different than being just tired. It is the utmost pure form of exhaustion. It is as if your body and your mind are separated. The mere thought of lifting your limbs to get out of bed sounds like the equivalent of climbing Mount Everest. Every cell in your body aches. Blood slowly moves through your veins; it’s as if there is not enough air to fill your lungs.

Unlike you, taking a nap or getting a good nights rest is not going to relieve anything. There’s no amount of self-care in the world that can touch this feeling. Imagine when you wake up your body aches and you’re so tired, dizzy, and exhausted and realize that you have the flu. The good news is that in a week or two you will be all better and back to your normal self. For somebody who is chronically ill, those two weeks last forever. Those two weeks never end. You’ll never wake up feeling better.

Health, Unveiling Invisible Illnesses

Dysautonomia International Education Day

Dysautonomia International Education Day in Clearwater, Florida 11/09/2019


The Education Day in Clearwater was great. I definitely would love to host a local (Brevard County) get together soon. I would love to have more time to talk and get to know the other warriors. Here was my quick take on everything:

It was pretty cool to hear that 30 different universities are currently studying dysautonomia. Lauren Stiles said the push for research funding comes from us patients wanting answers. It is assumed that 1-3 million people have POTS. Dr. Laura Pace (neuro gastric MD) says “we need to treat the cause, not the symptom.” Amen! She also had an amazing point that some of us (especially with Mast Cell) can develop eating disorders as a protective mechanism from symptoms. She had a case of a young girl that was diagnosed with anxiety and eating disorder but after Pace’s testing, she actually had severe gastroparesis and POTS. She is a huge advocate for the Smart Pill.

Dr. Raj was awesome! He was very funny and witty. He had pointed out that many patients do better on low dose beta blockers vs. the typical higher doses that are prescribed. I completely agree as my doctor originally had me on a very high dose, which bottomed out my bp and made my heart even more tachy. I do much better with low dose. Dr. Raj also briefs The Faces of POTS journal (2019, B.H. Shaw, L.E. Stiles, et al.) and points out that 89% of patients missed school, 28% were homeschooled, and 25% dropped out of school as a result of their POTS (B.H. Shaw). Dr. Raj recommends exercise tips, suggesting every other day or 4x per week for 30 minutes. He suggests if you are done and quit in 13 minutes then you need to go slower, pacing yourself. He does not suggest upright exercises. Behavioral therapy is also important in dealing with chronic illness; Dr. Raj states, “ultimately people have different strategies for learning to cope.” Yoga, therapy, SSRIs, mindfulness etc. are different options in coping (2019, Dr. Raj).

Dr. Laurence Kinsella (neuro) had great recommendations for CBT (Cognitive Behavioral Therapy) to help with coping. I also love that he mentioned “symptom snowball” which makes diagnosis tricky because of the long list of symptoms that we have. He discusses the longterm effect of meds used for migraine treatment and suggests Migreleif as a holistic approach, along with an elimination diet. He also suggested a free course to help with sleep management: free mindfulness course.

It is great to have a community driven for change, giving answers to the patients and education to health care providers. Dysautonomia International is not only raising awareness and providing education, but they are advancing medicine in a grey area that leaves millions in the dark. They are shedding light and discovering much needed answers, with much more to come.

Print Outs:

10 Facts About POTS

What is Dysautonomia?

10 Facts About Dysautonomia

Health

The October Slide: Chronic Illness in October

October is such an amazing month, but it is the start of another season other than Fall. It’s sick season! Illnesses increase and the chronically ill are greatly affected, sometimes ending up in the ER. Here’s why:

  • School is in full swing
  • Cold and Flu season
  • Darker days = reduced vitamin D
  • Low barometric pressure
  • Reduction in exercise routine
  • Increased asthma and allergies
  • Seasonal depression
  • Cold weather causes vasoconstriction, reducing blood flow and can be an issue with people who have previous constriction.

It is important to stay hydrated, frequently wash your hands, and take supplements to prevent deficiencies such as vitamin D. Low D can cause aches and pains, depression, and a weakened immune system. Vitamin C and Zinc can boost your immune system as well. Giving your body the best environment is helpful for preventing health issues over the next few months.

As the weather gets colder, we tend to exercise less. Lifestyle changes such as finding a new exercise routine in the winter and paying attention to your diet can help reduce health problems.

If you are sick, please stay home or wear a mask. Your germs could put someone in the hospital if they are chronically ill, elderly, or a patient with cardiac issues. Be considerate of others.

Self-care is a must. Now that you are reminded of the additional risks of health complications, I hope you prepare for the season and stay healthy.

*Disclaimer:

This blog is not to replace medical professionals. Always talk to your doctor.

Health, Unveiling Invisible Illnesses

Mayo Clinic Update

We are done for the day and just had the evaluation with the cardiologist. In a nutshell: it takes a village. My aortic valve is slightly worse but my heart isn’t in bad shape to need surgery YET so that is great news, for now. However, I did have an elevated NT-Pro BNP which is indicative of heart failure but ever so mild and more to be used as a baseline.

I will be back September 5th for more tests. I will finally get my cortisol and metanephrines tested. I will have a CT angio and a 7 day heart monitor. The role for this doctor will mainly be to monitor my heart valve. We are ruling out any other structural abnormalities and then this information will be very helpful to the new neurologist that I will be seeing out of state in Arizona, unless Nashville opens up (first choice). The answers I am mostly looking for will be there, to better understand and treat my dysfunctional nervous system. The full genetic sequencing is another piece of the puzzle. There are a lot of pieces.

The valve is one issue but my nervous system is what causes the other heart problems, as well and many other issues. This is an ongoing process. It’s is an up an down roller coaster. At times, I am excited to get answers and the Cinderella hopefulness to find a way to magically be better. Oftentimes I find the sinking feeling of reality and logic settling in my stomach that there is no cure, just management. It’s impossible to accept and why I still try to search for more answers.

My health is like a domino effect: one issue causes another, then another… There is such a huge list of issues connected to connective tissue (disorders). This also makes it difficult to understand and diagnose, because it’s essentially a giant cluster fuck.

I will always continue searching because science advances, awareness spreads education, and advocacy feeds it all. I will continue to fight for myself but also for the future of others that will stand in my shoes one day. I hope the darkness in my life fuels the light that other seek.

Thank you for listening and for your support. Feel free to subscribe or to reach out if you ever need any help. It is my passion to lead other patients in the direction they need.I know exactly what it feels like to be lost, medically neglected, and dismissed.

2020 Update: My EP study showed that I have a Myocardial Bridge and high pressure in my heart from working harder to pump. My surgeon suggests aortic valve replacement come May 2020.

Helpful Links:

http://www.dysautonomiainternational.org

https://www.ehlers-danlos.com

https://www.healthline.com/health/mast-cell-activation-syndrome

The Invisible Diaries

https://vimeo.com/292473119

 

 

Health, Unveiling Invisible Illnesses

Why I Am Going Out of State for a Doctors Appointment

 

After seeing a neurologist for about nine months, we came upon the solution for me to see a different neurologist, in the same office, since my doctor felt she couldn’t help me. Her specialty was migraines and seizures and she was not familiar with the dysfunction of the autonomic nervous system. I felt it might be easier to stay in the same office since maybe the two doctors could communicate or have access to more information, rather than leaving the practice altogether.

 

It has now been a little over a year with my newer neurologist. In this year, I have seen him every month at times. One appointment was to order an MRI without contrast to rule out certain diagnoses. Then, the next appointment was to follow up on that test and to order something else. It felt like it dragged on and on, leaving me to wonder why everything wasn’t just all tested at once. I could sense the uncertainty, and while he admitted that he isn’t familiar with dysautonomia, he sympathizes and ensures that he will help somehow.

 

The first neurologist ordered an EEG and she said everything was delayed but showed no signs of seizures; this was likely due to bradycardia. This was two years ago, before my pacemaker. After leaving that test, my heart rate dropped and I passed out in the hallway. Fortunately, I had a heart monitor on at the time and called my electrophysiologist and explained what happened. They looked at the episode and determined my heart rate plummeted.

 

Now, two years later, my new doctor decides to do another EEG. I find myself nervous, wondering if the testing triggered my episode last time. But I also find myself frustrated and here’s why: two appointments ago, my neurologist said that my (dysautonomia) episodes sound like seizures. He offered me seizure meds and I quickly declined. I avoid medication unless absolutely necessary or given a proven diagnosis. I stated that I would never take meds for a guessed diagnosis and that I was sure these episodes were a result of autonomic dysfunction, or dysautonomia, which had also been diagnosed by my electrophysiologist. Dysautonomia is common with Ehlers-Danlos patients. He admits again he is not knowledgeable in EDS or dysautonomia. “Let’s just try another EEG.”

Keep in mind that there are 12 million misdiagnosis per year. Having a complex illness makes it tough to get proper treatment and management due to the lack of knowledge in rare diagnoses. As a patient, it can be hard to walk away because we feel almost desperate to get care but also hopeful that we will make progress over time; maybe the doctor will come around, research, or learn more. Starting over is time consuming and you already put in so much…just like a relationship. Sometimes hope keeps us there longer than we should stay.

 

Finding a specialist (there are only three clinics in the country) that specializes in Autonomic Dysfunction for me is a must. Looking back, the last two years was a waste of time. The last two years, my diagnosis was never understood by my doctor, nor will it ever be. I was nearly fitted into his specialty of seizures, only to be added to the 12 million misdiagnosed, because that was his specialty. That was what he was comfortable with. Any many patients would have trusted his judgment, taken the pills and felt they were being cared for. Not me.

 

As I leave from my EEG test, I know that it may be the last time I come to that office. I chose to humor my doctor and myself with the test because it never hurts to rule out a diagnosis (again). I know that months from now, I will travel outside of the state to see a doctor that truly understands what is going on with my nervous system. After spending my entire life having notes in my medical records of “unusual symptoms” that no one could piece together, for the first time ever I will have a doctor that has that missing piece of the puzzle.

mental health, Podcast

How To Work Through a Problem – Listen Now!

Podcast Link

Hello! This topic is important to me because so many of us go through life struggling and stressed, never learning the proper tools to work through an issue.

The original post How To Work Through a Problem has inspired the topic for episode 5 on my podcast, The Misti Blu Days of Our Lives.

Please be sure to subscribe and leave 5 stars so that others can stumble upon my podcast and blog! It is available on Spotify, iTunes, and iHeartRadio, or you can listen on the RSS feed link.

Health, Healthy Food

Morning Routine Smoothie

The kids are back in school, and so am I. I love the break in the summertime but I really thrive on routine. I gained a little extra fluff in the last few months from sleeping in, overeating, and going out to eat too much.

With everyone back in school, I am forced to plan ahead for meals. Having a smoothie in the morning is perfect for me since I am not really hungry yet. This smoothie recipe is full of nutrients and has vegan protein, which will get me through my first class. The mushroom blend helps with focus, energy and stress. Lion’s Mane is my favorite mushroom because it repairs nerve damage.

Oat milk is loaded with calcium, potassium, iron, vitamin A and D. It is known for improving immunity and gut health as well as lowering cholesterol.

Healing Sprinkles is an anti-inflammatory healing blend with minerals and vitamins. I need all of that! Having this smoothie in the morning is the best way to start out my day. Having gastrointestinal issues due to Ehlers-Danlos Syndrome has caused me to have deficiencies. My tank is always on empty so this is a great addition of my routine that gives me a little boost.

What’s in it?

  • Ice
  • Banana
Tips and Tricks

Building or Repairing Your Credit Score

When you have a bad credit score, it can be disheartening and frustrating. Having chronic illnesses my entire life has made it a struggle to have a decent score. I let accounts go when recovering from health issues and being out of work from surgeries. However, I also never tried to fix them until recently. Part of me thought, “What’s the use?” I was wrong; it was not impossible and you can still make an effort. Plus, we want to buy a house and you cannot do that with shitty credit.

First, you want to monitor your score. I downloaded the Credit Karma app, a free app that allows you to monitor your credit for free. You don’t want to have to pay for your report and you also don’t want a hard inquiry, which can affect your score. So, keeping an eye out with Credit Karma is ideal. Also, try to avoid bills from making it into collections. If there is a bill you can’t pay, call and explain your situation. I call the hospital once a month and pay $5 towards a bill to keep it from going to collections. They don’t like it but they can’t say no.

When I started my journey last year, my score was under 500. I had several collections and truth be told, I never really paid attention or cared to keep an eye on my credit. I truly believe that this should be a lesson in high school, but that is another topic for another day. First, I started with setting up a payment plan for my school loan. I had paid off a loan entirely and didn’t realize I had another school loan in default. Oops! After 9 months, I was out of default with consecutive payments proving my responsibility. This did not necessarily increase my score but it removed a collection from the derogatory marks. It is not always about the score, which is important, but also about how many items are in collections.

I had several derogatory marks. One was an $850 collection I had; I called and set up a payment plan to pay it off in about 8 months. It feels good to settle debts and see your collections disappear. Again, this did not increase my score much but it helps the other areas that are looked at when your report is pulled.

My absolute favorite way that I increased my credit score was with an app called Self Lender. This app has increased my score more than anything else I have tried and it is also a great way to save money. I downloaded the app and chose the second plan. The first plan is $25 per month for two years but I chose the $48 per month for one year. This plan increases your score a little more that the $25 one, in comparison to my husband who chose that plan. Basically, you (self) lend to yourself and it reports and builds credit! At the end of the year, I will get the money back that I paid into the account while I successfully increased my credit. I went from 500 to 600 within 6 months!

Another option is opening a secured credit line at your bank. Many banks offer $200-$500 limits. My husband set his up at my bank for $300 (their minimum). You treat it just like a credit card, only it is your money. You don’t want to max it out. Just use it for small things, like gas or lunch. Aim to keep your balance low and pay it on time, otherwise you are defeating the purpose and it could lower your score. I opened a secured credit line with First Progress. It is linked to my bill pay on my online banking app.

Making a list of what you need to improve is also a productive plan for fixing your credit. Occasionally people have had derogatory marks or collections that were not accurate. My husband had a collection that was a duplicate. Combing through everything is a way to ensure that everything is accurate. Disputing anything that is wrong is simple and also easy to do through the Credit Karma app.

The Fair Credit Reporting Act promotes the accuracy, fairness and privacy of consumers. Basically, the credit bureaus have 30-45 days to resolve a dispute. It never hurts to try. Another thing you can do, is call the actual creditors and set up a payment plan or negotiate price to pay off the debt. If an account status is closed or a charge-off then paying it off is basically useless, so focus on the open collections. Keep in mind that collection agencies buy debts for cheap so you can negotiate. If you hassle them back and say that you only can pay $70 for your $150 debt, chances are they will accept that or something close. I had a friend recently tell me that she haggled a $10,000 debt down to $800 pay off! Keep in mind that they will want that in one payment. Make sure you ask when it will be reported and for a letter as well so you can follow up on your credit report.

I had a 2014 lease broken in Missouri and they were going after me for $8,758. That was excruciating. After months of phone tag, negotiations and frustrations, we finally agreed on a full payment of $3,000. I asked for a debt settlement letter and fortunately they were scheduled to do their monthly reporting to the credit bureau the following day. This was the very last thing holding me back from buying a house, because it was an open collection and at that price. If I had the time, I could have set up a payment plan and after 6-9 consecutive payments, it would have shown I was working towards paying it off. That works too, but we are trying to buy now and didn’t want to renew our lease another year.

Another cool way to give yourself a boost is through Experian. They have something called Credit Boost that links your utility payments. It added my phone bill and electric bill and I got an 8 point boost!

Now that you have a better understanding of some tips and tricks, you can continue to improve your score and create responsible habits that will keep your score up. Though I still have work to do, I know each month my score improves and that it doesn’t happen overnight or all at once. Be patient and vigilant.

Recommendations:

Our mortgage guy, Roy

Our Realtor