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 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 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

Health

Blu Detox Protocol

Order protocol system here

Blu Detox Protocol

Fasting is a method of restricting food intake and has been practiced for thousands of years. Studies have shown that fasting has many benefits, such as helping to reduce chronic disease by stimulating autophagy. Autophagy is the process of breaking down and disassembling dysfunctional cellular components and recycling or regenerating cells to balance the body or reach homeostasis. Fasting is not suitable for everyone; therefore, you should consult your healthcare provider or doctor to ensure it is safe for you.

Depleting your body of important vitamins and minerals can be dangerous, which is why I do not believe in strict water only fasting. This detoxifying cleanse comes with herbals teas to keep nutrients in the body while continuously boosting the immune system to prevent feeling ill as your body detoxes.

The ideal fast is recommended for 48-72 hours. After your fast is complete, you should avoid eating a heavy or large meal. Break your fast with something light for the first day. Start with clean-eating and small portions. You may also incorporate lemon water throughout the day with your fast, and/or a glass of celery juice first thing in the morning.  Otherwise, the fast should only be limited to the provided tea blends and water. If you have any additional questions, please email me at info@mistibludream.com and please remember that this is not to cure, diagnose or treat disease. Medical disclaimers are located on each packet for legal purposes.

 

You will find three tea packets included in the Blu Detox Protocol:

  • Spring Cleaning is the detox blend that supports the immune system while helping your body to eliminate toxins. This blend is naturally loaded with antioxidants and vitamin C. Have a cup of this tea each day during your detox. You can drink it cold or hot.
  • Revival is an anti-inflammatory blend that helps reduce stress levels, supply your body with nutrients, improves hair and skin health, soothes aches and pains, and helps with digestion. You can drink it cold or hot.
  • Energizing Sprinkles is a greens mix. Typically you could put it in your smoothies, juices or muffin mix but for this fasting protocol, you will mix a spoonful in a cup of room temperature water (can be chilled). This gives you energy while alkalizing the body and also assisting in the detox process. The blend will balance your pH, flush out toxins, sharpen your mind and focus, and boost your energy, all while improving your mood and keeping your electrolytes balanced. This does contain a small amount of green tea so if you cannot have caffeine, please customize your detox by swapping it out for Healing Sprinkles. Healing Sprinkles is not a greens mix but has many nutrients, mood improvement qualities, and anti-inflammatory properties. This blend is usually best in hot water as a tea, with honey and coconut milk (and baked goods, smoothies, and coffee). However, additives and other ingredients are excluded during the fast.

*This protocol system comes with three packets, each providing enough product to last the full three day cleanse. This can also be ordered as a sampler to try the three blends without having to order full sizes.

SHOP!

 

 

Health

Unconsented Pelvic Exams

*Sharing my homework assignment with everyone because it matters and I always choose important topics.

Intro To Healthcare Assignment: Ethical Issue

Ethical issue: Performing unconsented pelvic exams on women while they are under anesthesia is legal in 45 states.

My Perspective:

Medical students are practicing pelvic exam while patients are under anesthesia. During Shawn Barnes’ third year in medical school, he was asked to and did perform pelvic exams during his obstetrician and gynecology training. Once anesthesia was administered, the attending physician or resident would ask Barnes to perform a pelvic exam for educational purposes.

When later voicing his opinion of this ethical conflict, Barnes learned that this was, in fact, a standard protocol to perform unconsented internal vaginal exams on unsuspecting ob/gyn patients. Many people outside of the medical field are shocked and horrified to learn that doctor-patient trust could be violated in this way.

Why wouldn’t the doctor or the hospital require consent? It has been nearly a decade since Shawn Barnes voiced his opinion and nearly thirty years since this topic has first been discussed and yet these exams still occur in 45 states, legally. Simply put, we need to end the practice of uninformed and unconsented internal vaginal exams.

I can’t help but wonder if I have ever had an unconsented pelvic exam during one of my many ob/gyn surgeries. Please contact your local government.

*Hawaii, California, Illinois, Virginia, and Oregon have outlawed the practice

Missouri
Office of Missouri Governor Michael L. Parson

P.O. Box 720
Jefferson City, MO 65102

Florida

Office of Governor Ron DeSantis

State of Florida

The Capitol

400 S. Monroe St.

Tallahassee, FL 32399-0001

Sources:

https://journals.lww.com/greenjournal/pages/articleviewer.aspx?year=2012&issue=10000&article=00028&type=Citation

https://onlinelibrary.wiley.com/doi/abs/10.1111/bioe.12441

https://www.ncbi.nlm.nih.gov/m/pubmed/12592274/

https://www.ncbi.nlm.nih.gov/m/pubmed/16206868/

https://medium.com/@holympus/its-time-to-completely-stop-unconsented-pelvic-examinations-cef80c38b334

Health, Unveiling Invisible Illnesses

What is Ehlers-Danlos Syndrome?

Ehlers-Danlos Syndrome is an inherited heterogeneous group of thirteen subtypes in which abnormal collagen synthesis affects connective tissue: skin, bones, ligaments, blood vessels, organs and tissue. Collagen is a major structural component of the body. Danish dermatologist Edvard Ehlers recognized the condition in 1901. In 1908, a French physician named Henri-Alexandre Danlos suggested the features of the syndrome. Weak and structurally abnormal collagen may result in flexible and loose joints, poor wound healing, fragile blood vessels, ruptured or prolapsed organs, dysautonomia and many other various health conditions.

The inheritance patterns vary based on each subtype. Autosomal dominant inheritance means that just one copy of an altered gene can produce the disorder. For other subtypes, the disorder can be inherited from one affected parent and some even develop new gene mutations that occur with no family history. The gene mutation for COL1A2 can be found on chromosome seven, altering the collagen found in most connective tissue. This particular gene is associated with cardiac-valvular EDS, atypical Marfan Syndrome and Osteogenesis Imperfecta. There currently is no known gene linked to the most common subtype, hEDS; however, recent testing and research has been launched to discover the gene associated.

The launch collaborated with Ehlers-Danlos Society will collect enough data to gain more knowledge of this rarely diagnosed disorder. Different genes are associated with different subtypes and symptoms can range from mild to life threatening. 

For formal diagnosis, a referral to a geneticist is a start. There is test called the Beighton Scale, which has helped assess hypermobility since 1998. Medical history is also important for diagnosis. There is also a list of diagnosis criteria for each subtype that require a patient to meet a certain amount of history and symptoms. Vascular EDS can be potentially fatal, which makes proper diagnosis and subtype classification important.

Ehlers-Danlos Syndrome is not curable but symptoms may be managed with a team of specialists. It is a systemic disorder, meaning that multiple systems may be affected. Many patients see a range of specialists such as pulmonology, electrophysiology, cardiology, gastroenterology, neurology, pain management and so on. Specialists involved depend on the patient’s specific symptomatic issues that are a result of the connective tissue disorder. 

The current statistics for the more common subtypes are 1 in 2,500 to 1 in 5,000. Some of the rarer types only have a handful of documented cases. However, recent clinical studies show that EDS is more common and not so much rare as it is rarely diagnosed. This makes awareness, education and advocacy so important, in order to better understand and diagnose this disorder. 

 

 

 

 

References:

 

The Ehlers-Danlos Society. What Are The Ehlers-Danlos Syndromes? Retrieved from https://www.ehlers-danlos.com/what-is-eds/

 

National Library of Medicine. (April 2019). Genetics Home Reference: Ehlers-Danlos Syndrome. Retrieved from https://ghr.nlm.nih.gov/condition/ehlers-danlos-syndrome

 

Health, mental health

The Invisible Diaries Podcast and Show

I am so excited to announce the upcoming launch of a show with my dear friend Amber, called The Invisible Diaries! The show will be shedding light on invisible illnesses. We are going to interview guests as well.

If you are interested in being on our show, please emails us at theinvisiblediaries@gmail.com and introduce yourself.

Instagram and Facebook Daily Topics

  • Mental Health Monday – Mental health awareness, support and education
  • Teach Me Tuesday – Education, information and learning
  • Words of Wisdom Wednesday – Quotes and inspiration
  • Thankful Thursday – Focusing on the good and finding balance
  • Favorites Friday – Favorite things and product highlights

Stay tuned and follow us on social media for updates on our official launch!