7 Things I Learned From My Chronic Illness That I Never Knew As A Nurse

I can’t even begin to count the number of times I have been asked what I have learned from my illness. I also get asked what if anything I have learned about the Healthcare System from being a chronic patient that I didn’t learn in all the years I worked as an RN or the years I was in school for my nursing degree. The first few years not much came to mind. But the longer I have had to deal with a chronic illness, the more doctors I have seen, the more insurance companies I have to fight, I have definitely learned some things that my education or work experience NEVER taught me. You may be thinking, how is that even possible, you went through more than 4 years of Nursing Education and worked in the healthcare field for over ten years, how would being chronically ill teach you anything that you didn’t already know? Well that is easy. During nursing school or during all those years I worked in healthcare I wasn’t the patient. I was the caregiver. I didn’t really see what the patients had to deal with just to get the treatments they needed, and I didn’t see the judgment that patients feel from the healthcare staff. I will just be completely honest, you have no idea as a healthcare provider what it is like to be on the other side of that bed until you have been on that side yourself!! So lets just jump right in!

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1. The real meaning of a Chronic Illness – One of the BIGGEST things I have learned from my illness seems silly but I want to be honest. I have learned the true meaning of a CHRONIC ILLNESS. When I took care of patients in the hospital who had a chronic illness it NEVER really hit me just what that meant. I never realized exactly what chronic meant and just how much of their lives are impacted by their chronic disease.

2. Sympathy and Empathy – These are entirely different entities. It is very different sympathizing and trying to understand where someone is coming from. Now that I can empathize as both a patient and as a nurse it has changed my outlook as well as how I interacted with patients and their families. I learned how and why chronic illness patients seem more guarded and at times more fearful than your average patient.

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3. Use of medical jargon – While I was working as a nurse I never realized just how often medical professionals use medical jargon. Most likely because i was using it to. Luckily I understand most of it as a patient. But when I am having one of my bad migraines it is often hard for me to really understand much of anything. It was those days that made me so much aware of just how often medical terminology is used to explain things to patients and families rather than lay terms.

4. Dealing with judgement – Sadly, through the last six years I’ve had to learn how to deal with judgmental medical staff more than I ever expected. Before I got sick I never realized how quick medical professionals are to judge (myself in the past included). Since being sick with an invisible illness I now know how it feels when people assume things about you based solely on your appearance and not your medical history. Or how it feels when people assume you are drug seeking based on your medical diagnosis before they even come and talk with you. This made a huge impact on me and how I practiced nursing.

5. Being Aware of The Cost of Procedures, Treatments, Treatment Centers & Medications – I’ll be 100% honest and say that when I was working ICU Step Down I was not aware of the cost of probably 95% of the medications and treatment modalities we used for our patients. It wasn’t because I didn’t care, it was simply because I had to know so many other things that this information would take a back seat. On the other side as a patient I am much more aware of what medications cost and how much MRI’s or CT Scans will cost and what my out of pocket will be. Simply because I have to pay for it. I feel like there is a break down between providers and patients on this topic. The providers want the best treatment no matter the cost. But the patient would usually prefer the best treatment for the cost. Learning this as a patient definitely changed things I did in my practice. Because I knew what it was like to hear your new medication was going to cost $25,000.

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6. Honoring Time – What I mean by this is that when you’ve asked for something for pain and the nurse says “I’ll be right back,” or “I’ll be in at 5pm” with pain meds. But they don’t come back for 30 minutes or until 5:15 those minutes feel like hours. As a nurse I always tried to get right back or to go when I said I would. But I never truly understood just how long those 10 or 15 minutes I was gone really felt. When you are hurting or feeling sick to your stomach those 15 minutes may feel like 4 hours!

7. Trust the patient/listen to patient regarding what works for them. I think as a medical professional it’s easy to work based on knowledge or experience. But it’s really important to listen to the patient in regards to what works. I’ve learned this because of my migraines. I’ve dealt with them so long that I know what is going to help and what is a waste of time. And I really appreciate the doctors and nurses who listen to me and don’t just throw meds at me because of what they “always give” for migraines.

Needless to say, I have learned so much from being a patient with a chronic illness. I feel like that in some strange way it actually made me a better medical provider. As you can imagine after working in the medical field for many years I have many friends who remain in that field. And due to the things I have experienced with my chronic illness they have been able to learn and improve on the way they practice and treat those they care for who are in similar situations. I will always stand by my feelings that every medical provider should have to be a patient for at least a short period so they can experience things from the other side of the bed. So they can have the full patient experience. Their views on the way they treat patients would be forever changed like mine. That being said, a chronic illness is not something to joke about; however, it has given me a view into a world that I felt I was fully enveloped in, which I had never fully seen before. And for that I will always be grateful.

With Love,

Amber

What You Need To Know About Headaches……Part 3

I had hoped to get my migraine series finished before the end of June, which was migraine awareness month. However, sadly I spent most of the last week of June in the hospital with a MIGRAINE. I had dealt with it for over ten days and finally waved the white flag, cried uncle and went to the hospital. I was hoping that I would be able to break the migraine by just getting medications in the ER. But no luck, I had to be admitted for four days. So finishing this treatment section of the migraine series seems appropriate, as I spent the last couple weeks living in this phase of a migraine.

So how do you treat a migraine??? Well, that’s really a hard question to answer. What works for me may not work for you and vice versa.  And I have found it to be more a case of trial and error of what might work. I have tried SO MANY medications and treatment options over the years. Even thought I have been on this migraine journey for over 15 years I am not totally sure that I have found the perfect mix yet. In the early years I only had migraines periodically, it wasn’t until the last three years that they have really become debilitating.  I also didn’t start having the hemiplegic (stroke like) migraines until 2016. One of the big things I can’t stress enough when you are on the search for the best treatment for your migraines is to keep a journal of your symptoms, what you did, what you ate etc on the day of your headaches so you can see if there is something recurring with each migraine. So lets dig in to treatment options.

The most common treatment for migraines are medications. Whether you take over the counter meds, preventative meds or meds for the acute head. Below you will see the each type of medication explained.

  • Over the counter (OTC) medications are medications that can be bought without a prescription on the counter at any pharmacy.
  • Acute medications are used as soon as a migraine is happening. These are also known as abortive medications.
  • Preventative Medications are used on an ongoing or routine bases, in hope that they will prevent or reduce future attacks. These can also be called prophylactic medications.

Over the counter options for acute symptoms include:

  • Excedrin Migraine
  • Ibuprofen which is also known as Advil and Motrin
  • Naproxen which is also known as Aleve
  • Aspirin (you need to check with your physician before taking this medication as it is also a blood thinner)
  • Acetaminophen which is also known as Tylenol

Examples of prescription drugs you might be given to take for acute (when the headache is happening) symptoms include:

  • Triptans are a class of medications that deal with the chemical Serotonin in the brain, which helps to diminish the swelling of the blood vessels that cause the headaches. These drugs are primarily used in the treatment of acute headaches. This method of treatment goes back to the 1950s. Examples: Maxalt & Imitrex.
  • DHE 45 became a treatment for migraines in the 1940s. It is only used to treat migraines in the ACUTE stage and should not be used as a preventative medication. This medication is available as an injection, IV drip and nasal spray.
  • Ergotamine is a medication that is used for a SPECIFIC kind of headache. It is used to treat vascular and tension headaches. The medication works to narrow the widened blood vessels in the head, which in turn reduces the throbbing effects of vascular headaches. This medication is also used only in treatment of acute headaches.

Examples of medications that are given as  preventive or prophylactic prescription medications include:

  • Beta blockers (Use caution with these as they can also lower the blood pressure and heart rate) This group of medication is used as a preventative medication to treat migraines. They work to relax and open up blood flow thus reducing the frequency of headaches.  Examples: Propanolol or Toprolol.
  • Calcium Channel Blockers (Use caution with these as they can lower the heart rate) This group of medication is used because of the way it works, basically the end result is that this group of medications prevent contraction of the muscle wall of the artery.  Examples: Procardia or Verapamil
  • Antidepressants are often used as a preventative medication for headaches because the tricyclic antidepressants also work to treat chronic pain. Thus they work well for migraines.  Example: Elavil
  • Anticonvulsants this group of medication work to calm the hyperactivity in the brain. Example: Depakote, Topamax, Gabapentin

There are also many other options for migraines. One of the most common is the Complementary & Alternative Medicine. This option includes any medicinal products or practices that are not part of modern medicine. Alternative medicine can be defined by its use an an alternative option to traditional modern medicine. Complementary medicine is used in conjunction with traditional medical treatment. These treatments could be things like: any natural remedies like herbal medications or treatments, vitamins, minerals or any kind of supplements. There are many options of herbal medications, which I have tried, the one I personally had the most luck with was feverfew. Other options would include meditation, yoga, biofeedback, acupuncture, tai-chi. Or even body-based practices like chiropractic adjustments or massage therapy. Like always, before starting any new over the counter medication, herb or supplement. Or any increase in physical activity please check with a dr before doing so!

In addition to medications and alternative or complementary therapy, the U.S. Food and Drug Administration (FDA) has now approved two different nerve stimulators that may be helpful for certain people who have not gotten any relief from all other treatment options. The Cerena Transcranial Magnetic Stimulator is a device that has been approved for anyone over the age of 18 who have migraines that are preceded by an aura. This specific device is help to the back of the head and will deliver a pulse of magnetic energy.

There is also a vagus nerve stimulator that has been approved for use in adults with migraines, as well as those who suffer from episodic cluster headaches. This device is hand-held and is placed over the vagus nerve in the neck and it releases a mild electrical stimulation to reduce pain.

In 2010 Botox, previously primarily known for its use by plastic surgeons, was approved for use with chronic migraines. Currently the FDA has only approved Botox use in those with chronic migraines, which means a person must have 15 or more headache days a month. Research shows that the more frequent the headaches the better the Botox result will be. Botox is given as approximately 30 tiny Injections around the head, the injections are given around pain fibers that are involved in headaches. Botox will enter the nerve endings around the injection site and then blocks the release of chemicals involved in pain. This in turn prevents activations of the pain networks of the brain. Patients who receive Botox can only receive injections every 12 weeks. And it generally takes 3-4 treatments at least to begin to fill the full impact it may have. Botox requires pre-authorization by the insurance company before it can be given. Along with very detailed documentation by the doctor regarding the frequency and duration of your headaches.

In early 2018 the FDA approved the first drug of its kind for migraines. It is said to reduce the number of migraines among those who are prone to migraines. Most of the medications currently used for migraines are used to control the symptoms. The new drug, called Aimovig, is designed to reduce the number of migraines among the population who suffer most frequently. One of the largest studies done during the testing stage showed that the number of migraines dropped from eight to fewer than five. This medication is given as an injection, much like insulin, delivered by a pen-like device. The one big downfall for some is that the medication will cost around $6,900 a year, and insurance coverage is not completely decided at this point!!

I hope each of you enjoyed this series on migraines and that maybe you learned something you didn’t know. I know I learned a LOT while doing the research for this series. Migraines are so complex and I could have probably written a five part series or even more. There are so many options of medications available along with many more non-medicinal treatments available, than in years past. And so much research is being done to find the best treatment available for migraines. I didn’t cover Botox in much detail and there is a lot of information I could share. If you are interested in learning more about Botox or the new medication Aimovig leave me a comment and let me know. Also, if you have a condition that you would like me to do a series of posts on let me know and I will dig in and start my research. This has been pretty popular so I am looking forward to doing more multi-part series in the future.

With Love,

Amber

The Truth Behind Photosensitivity

By AMY NORASummer is officially here. It means we go to the beach, we sit outside at the Ballpark, we go and plan for those wonderful picnics, we spend time with family barbecuing, it’s about the time with friends family and just enjoying those wonderful late nights at the lake. The other thing is that we are out in the Sun a lot. When you have an autoimmune disease that also means that most likely you experience photosensitivity. Photosensitivity is that nasty little friends that accompanies us everywhere. It means that we lather on that sunscreen as if, well honestly, she were our best friend. We layer it on at 2 hour intervals as if our lives depended on it; ironically in a way our lives do depend on it.“Photosensitivity is the term used to describe sensitivity to the ultraviolet (UV) rays from sunlight and other light sources, such as indoor fluorescent light. Photosensitivity can cause rashes, fever, fatigue, joint pain, and other symptoms in people with both cutaneous (skin) and systemic lupus. Excess exposure to UV rays is a common trigger for increased disease activity (flare) of both cutaneous lupus and systemic lupus.” (Lupus Foundation of America)Remember, with the 4th of July holiday coming and summer here,  have fun but also protect yourself.  Use sunscreen often, stay in shaded areas but remember you are still exposed to UV rays, wear hats, and just be smart. Lupus Love…

What Abbreviation CDC Means For The Chronically Ill

When you hear someone say CDC I’m sure the first thing you think of is Centers for Disease Control! I thought the same until earlier this year. In early spring I joined a twitter chat on Healthcare and insurance issues faced by the chronically ill. It was a great chat and I felt a lot of issues were brought to the forefront. Due to this chat I found (they actually found me) a great organization called The Chronic Disease Coalition (CDC). Once I took time to look into the organization, I really liked the work they do – advocating for those with chronic illness by promoting awareness and encouraging all to take action Per Below, I will tell you more about this incredible organization and how you can become involved if this is something that speaks to you!

The nonprofit organization was founded in 2015 with the goal to create a platform for people with chronic conditions to speak out and take action to make a difference in their community, state or even across the United States. The CDC dedicates their time to protect patients’ rights and fight against discriminatory practices or policies that prevent patients from accessing care. Since the day they became an organization they have focused their efforts to advocate for people who live with lifelong chronic conditions like, MS, diabetes, lupus, kidney disease and cancer. The CDC promotes awareness and education in hopes that they can raise public awareness of the chronic health issues that we deal with on a daily basis. They do this in conjunction with encouraging other to engage in advocacy and provide advocacy tools that help fightagainst discriminatory practices As a whole, they recognize that we are strongest together, so they enable supporters to speak out and do the same when help may be needed to protect the rights of all patients.

One of the big things that this organization spends a lot of time on are the health issues that are being dealt with by the government at both state and federal levels. They really encourage us to get involved with any issues that may put patients lives or access to care in danger. Recently, they have been focusing a lot of time on the opioid crisis. Many have written letters, sent emails or called their representative to educate them on the issue. They have also been focusing attention on legislation across the country that would allow insurance companies to reject coverage for individuals simply because part of their medical bills are being paid by nonprofit organizations! This could mean that people would be unable to receive care of any kind, and would be especially dangerous for those who rely on treatment to stay alive.

If you visit the CDC Website you can find the facts on all the issues that have resulted from insurers, policymakers and others within the health space, trying to cut corners and increase their profits and the patient’s expense. They provide information about the problems that the chronically ill may face with insurance companies, in the workplace or at school! The website also gives you the options of sharing your experience dealing with all the issues brought upon by chronic illness. As well as the option to take action and write your legislators about some of the big issues like the ones mentioned above.

You also have the option to join the coalition.When you join the coalition you will receive information on the important issues and alerts when they need you to help stand up for patients rights. I joined the coalition in March of this year, and it has been a great experience. I have learned so much and realized just how much I didn’t know about the real issues at hand. If you are concerned that they will overtake your inbox with alerts and such, that is not the case. I may get as many as 5 emails a month. In those emails we receive information about bills that we need to focus on or ways that we can help spread awareness or act as an advocate.

I asked a few of my “co-advocates” why they decided to join forces with the CDC and this is what they said.

I am an advocate because it seems like a lot of what we go through is unspoken in our society. I really want to bring a focus to those of us who struggle with chronic diseases and pain on a regular basis. I want lawmakers to know what we go through, so they can make informed choices, instead of voting against our interests. -Gwendolyn Bahu

I chose to become an advocate because I don’t want anyone to go through what I have with endometriosis or any other illness. Chronic diseases are debilitating and wreak havoc on every aspect of our lives and desperately need more funding and awareness. I decided to be part of the Chronic Disease Coalition to help others and bring more awareness to chronic illnesses. – Samantha Bowick

If this organization sounds like one you. would liked to get involved with make sure to go to their website and find out more about getting involved. It feels so good to know that you are working on something that could impact thousands of lives.

With Love,

Amber

**All pictures used for this post were taken from the CDCs Website with approval**

What You Need To Know About Headaches……. Part 1

June is headache awareness month, so let’s take some time to look at all things headache. There are said to be 150 different kinds of headaches from cluster headaches to sinus headaches. And the most commonly known, migraine headaches. Each kind of headache contains some kind of pain and that pain can be located indifferent parts of the head based on the kind of headache! We will also look at other symptoms that accompany the headache that range from nausea to double vision. Below in part one of a three part series we will talk about the types of headaches that are most common, as well as possible causes for headaches overall. So let’s just jump right in!

Most Common Types of Headaches

The two most common kinds of headaches are tension headaches and migraines so we will discuss those first.

Tension Headaches– These are the most common type of headache among teenagers and adults. Generally, this type of headache causes mild to moderate pain and come and go over time. On most occasions they have no other symptoms. It is said that 80-90% of the population suffer with this kind of headache at some point in their life. Overall, 80% of women and 69% of males will experience tension headaches. With age of first onset is usually between 9 & 12 years of age.

Migraine Headaches– These Headaches are often described as “intense.” The pain from a migraine is often described as pounding or throbbing pain, and often last from a few hours to a few days at a time. The frequency is going to be different for everyone but on average happen one to four times a month, or potentially more. Sadly most who suffer from migraines also deal with other symptoms that accompany the headache. The symptoms can range from person to person, but the most common are sensitivity to light, noise or smells. Migraines can also bring on nausea and vomiting, loss of appetite, belly pain or upset stomach. For children with migraines their symptoms can be different. They can look pale, feel dizzy, have blurry vision, a fever or an upset stomach.

Research shows about 16-17% of the population will suffer from migraines at some point, with the median age of onset between 5-8 years of age. Migraines are by far the most debilitating kind of headache. It is said that 25% of women and 8% of men suffer from migraines. Research shows that 60% of migraines present on one side of the head. 80% of migraine sufferers report that there are some kind of trigger that causes their headache. Just to give you an idea of how many people suffer from migraines and how much of their lives are dedicated to dealing with migraines. It is reported that 157 million work hours are missed each year due to migraines.

Other Types of Headaches

Cluster Headaches– Those who experience these headaches say that this type of headache is intense and feels like a burning or piercing pain behind or around one eye, and is usually throbbing or constant. It is the least common type of headache but often causes the most severe type of headache. People who suffer from these headaches often say the pain is so severe that they can’t sit still and will often be seen pacing during an attack. The pain is often said to be one sided and the eyelid can droop on the side of the pain. The eye may redden, while the pupil decreases in size or tears. The nostril on the side of the head where the pain is can either run or feel stuff. The reason they are called cluster headaches is because they tend to happen in groups. They may happen one to three times a day during a cluster period, and that period may last 2 weeks to 3 months. And each single headache attack may last 15min to 3 hours and may often wake the patient up from sleep! The headaches may disappear or completely go into a state of remission for months or years. Cluster headaches affect men three to four times more often than women.Sinus Headaches- These headaches often cause a deep and constant pain the cheekbones, forehead or bridge of the nose. They are caused by the sinus cavities in the head becoming inflamed. The headache usually does not come alone, it is usually accompanied by a runny nose, feeling of fullness in the ears, a fever, and even swelling in the face. A true sinus headache is caused by a sinus infection, which usually causes yellow or green discharge from the nose, unlike the clear drainage noted in cluster or migraine headaches.

Hormonal Headaches – Last but definitely not least. These headaches are seen primarily in women. They happen from changing hormone levels during menstrual cycles, pregnancy and menopause. Headaches may also be triggered by birth control pills in some women.

Most Common Causes of Headaches

What actually causes the pain of a headache? The pain that is felt during a headache comes from a mix of signals between the brain, blood vessels and nerves in the area. Specific nerves of the blood vessels and head muscles switch on and send pain signals to your brain. It is not the totally clear why these signals turn on to begin with.

People often get headaches due to:

Illness: Anything from an infection, cold or fever can cause a headache. Also common conditions like inflammation of the sinus cavities, an infection of the throat, or even an ear infection.

Stress: Any kind of emotional stress or depression, as well as alcohol use, skipping meals, change in sleep patterns or taking too much medication.

The environment: things like being around secondhand smoke, strong smells from cleaners or household chemicals, perfumes, allergens, certain foods, pollution, noise, lighting, and weather changes are possible trigger

Trauma: In some cases headaches may be caused by a blow to the head or rarely may be a sign of something more serious.

Other causes can include things like: eyestrain, neck or back pain, poor posture and even to much exercise.

Sadly, Headaches especially migraine headaches, tend to run in families. Most kids and teenagers (90%) that have migraines often are not the only one in the family. Most of the time there are other members of the family who also suffer from migraine headaches. Kids who have two parents that have a history of migraines have a 70% chance that they will also develop migraines. If only one parent has headaches the risk will drops to between 25-50%.

America complain about headaches more than any other medical condition. It is said that there are approximately 45 million Americans who complain of headaches every year. If you break that down it works out to one in every six people or 16.54% of the population who deal with headaches. Research shows that more than 8 million Americans will seek medical treatment for headaches EACH YEAR!

Headaches impact a huge number of people every year. The the causes of headaches are multifaceted, and will impact every body differently. There are over 150 types of headaches and they are each slightly different than the next. What causes one person’s headache may not cause the next persons. Be on the lookout for the next part of this series, during which we will be looking at how headaches may be diagnosed. And in the last issue of the series we will be looking into treatment options for migraines.

With Love,

Amber

The Truth Behind the Gluten Free Diet Part 2

Continuing on from Part 1 we will now take a look at what researchers have found more recently in regards to The gluten diet. We will also be looking at the potential benefits and potential risks of eating a diet low in gluten. I will also give you some examples of good gluten-free foods and the kinds of foods you should avoid.

In the early 2000’s Dr. Fasano continued the study of celiac disease, and the gluten-free diet. He also completed a large study that found the prevalence of celiac disease in the US to be about 1%. Which was actually 10 times higher that what researchers in the US before this study! Fasano’s research was published in the Journal JAMA International Medicine 2003.

After the spotlight was placed on Celiacs Disease in the US, many more studies were done and published, regarding the gluten sensitivity in Americans. Some research began to suggest that a gluten free diet might actually be beneficial to people with other health conditions, not just Celiacs. There have also been research done that showed that there could potentially be a link between gluten and schizophrenia, or gluten and autism.

“There is a possibility that some groups of individuals with other chronic inflammatory conditions, including autoimmune diseases like diabetes or multiple sclerosis, of course autism … and schizophrenia … there could be a subgroup of these individuals that could benefit from embracing a gluten-free diet,” Fasano said.

As research on this issue has continued, links between gluten-free diets and improvements of various other symptoms and disorders, has been found.

Around 2010 celebrities started to speak out about gluten-free diets. A popular singer and actress put out information on social media that she had lost a significant amount of weight by removing gluten and lactose from her diet, she did also say that she has allergies to gluten and lactose. But not everyone heard it chose to listen that she cut it out due to allergies and only saw that when she did this she lost weight. Around this same time, multiple food manufacturing companies began working to expand products that were gluten-free to keep interest in the products among the groups that were eating gluten-free diets. At this time rules for defining gluten-free products changed and would now require that food labeled as gluten-free must have an undetectable level of gluten. The early 2010’s is when the shift in gluten-free diets started. At this point removing gluten was not longer a medical treatment Celiac’s Disease, but a diet method.

Although in the past, gluten sensitivities were very obscure, it is now estimated that gluten-related disorders could affect 10% of Americans. While gluten sensitivity is being seen more often all over the world. It has been found that more consumers who don’t have any Celiacs Disease, or non-celiac gluten sensitivity, decided to change to a gluten-free diets by choice. According to a study that was published in The Journal of Internal Medicine in November 2016, in 2009 and 2010, 0.52% of Americans without celiac disease eliminated gluten from their diets, and by 2014 that percentage rose to about 1.69%.

The increase in people on a gluten-free diet could be due to the benefits that can be found from eating that way. Dr. Axe wrote an article talking about Gluten. He states that a diet low in gluten could potentially increase fat burning, provide a burst of extra energy, reduces inflammation, and easing of digestive symptoms like gas, bloating it diarrhea.

In the article by Dr. Axe he lists 6 ways a person can benefit from a gluten free diet. They are:

  1. May ease digestive symptoms
  2. Could provide extra energy and resulting in less brain fog
  3. Could be beneficial for children with autism
  4. Can decrease inflammation
  5. Promotes fat loss
  6. Improve symptoms of Irritable Bowel Syndrome

Some research in the last few years has found that gluten & gluten containing foods can potentially be a trigger for joint pain. It has been proven that certain foods are pro-inflammatory, meaning they increase inflammation. Pro-inflammatory foods could include gluten-containing grains, and any of the thousands of foods that are made from those grains. Many people with celiac or gluten sensitivity have found that when they remove gluten and gluten containing products they have less arthritis pain. However, most providers don’t feel like there has been enough research done on humans to determine if gluten can really help reduce inflammation.

That being said, medical experts caution that no one should begin a gluten-free diet for arthritis before having testing for celiac disease. Due to the fact that it might not be gluten causing the problems it could be a wheat protein allergy or lactose allergy or an issue with FODMAPs(which is small sugar molecules in some fruits and veggies.) They can all be pro-inflammatory and irritate the gut as well.

Since gluten-free diets have become one of the current “fad diets,” experts have began to warn people that gluten-free eating might not offer benefits. If you don’t have gluten sensitivity changing to a gluten-free diet could actually do more harm than good in the long run.

“We definitely don’t recommend a gluten-free diet for weight loss. My dietician will tell you that. The reason why is, when they remove gluten from a lot of these foods to make them taste more appealing, they add more calories or carbohydrates,” said Dr. Runa Watkins, assistant professor at the University of Maryland School of Medicine, who specializes in celiac disease.

“The second thing is, being on a gluten-free diet also puts you at risk for other nutritional deficiencies in the long run, such as like B-12 and zinc and folate,” she added, “And cost-wise, it can be expensive. So we definitely don’t recommend it just because.”

What you don’t hear much about is other foods, chemicals and medications that cause inflammatory issues, which is great for those without a diagnosis. People who have celiac symptoms or inflammatory issues who test negative for celiac disease are left without a diagnosis. But we are starting to learn about other foods and meds that could potentially produce the symptoms they are having. Recently there have been studies that have shown that the following foods and additives can trigger symptoms identical to celiac, gluten sensitivity and increased inflammation

The following list contains foods and additives that can potentially cause the aforementioned symptoms.

  1. Sugar
  2. Vegetable Oil
  3. Fried Foods
  4. Refined flour
  5. Dairy
  6. Artificial Sweeteners
  7. Artificial additives
  8. Saturated Fats
  9. Grain Fed Meats
  10. Processed Meats
  11. Gluten in store bought bread
  12. A second round of alcohol
  13. Trans fats
  14. Fast food

There is new research that has been done and published in the Journal of Proteome Research that has identified 5 new groups of non-gluten proteins that are responsible for inflammatory issues in patients with celiac. These proteins are very different to the gluten proteins that are known to cause celiac disease. This research gives those who test negative for gluten antibodies but respond well to a gluten-free diet hope. Hope that one day we will really understand what foods cause inflammation issues, GI symptoms, and what foods don’t.

In order for you to totally remove gluten from your diet, reading food labels is essential. Sadly, most of the time you won’t find “gluten” listed in a food label. So instead you should avoid foods that contain the following

  • Wheat
  • Rye
  • Barley
  • Malt
  • Brewer’s Yeast
  • Oats (unless you see on the label that they are gluten free)

So now you may be thinking, “What’s left?” So below you will find a list of good gluten-free foods, that are very nutrient dense.

  • Quinoa
  • Buckwheat
  • Brown Rice
  • Corn Grits
  • Gluten-Free Oats
  • Nut Flowers
  • Veggies and Fruits
  • Meat, Poultry and Fish
  • Nuts and seeds
  • Beans and Legumes
  • Dairy Products

Fad diets will come and go, just look at how Jenny Craig, South Beach Diet, or Weight Watchers are in and out of popularity. Everyone is always going to be looking for the easy out and the quick way to lose weight. The gluten-free diet is not one you should look into for weight loss though. Gluten-free diets really should be reserved for those who truly have a gluten sensitivity or have tested positive for celiac disease.

It is essential that you talk with your doctor before you make ANY DIETARY CHANGE. If you want to eat a low gluten or gluten-free diet, your Doctor needs to check to make sure you don’t have a gluten sensitivity. Simply because changing to a gluten-free diet can actually be detrimental to your health if you don’t have a reason to be eating that way. If your doctor okays the diet change, and you have a good experience with the change, stay the course. But remember when shopping to read the labels. In many cases when gluten is taken out of products, a lot of preservatives are put in its place. Many times there will be more calories and carbs in “gluten-free” food. If you are changing your diet and removing gluten and gluten containing products to see if inflammation levels will drop, please check with your dr before making dietary change. What may work for one person may not work for another. That being said, I expect that in the coming years more research will come out about how gluten impacts inflammation. I also expect more guidelines to come out from the FDA regarding the nutritional content of gluten free foods.

I hope that you were able to learn something from the information provided. And that you might be able to make a more educated decision on what you want to do regarding gluten in your diet!

** If you like this type of research based post please let me know in the comments. I want to produce the kinds of things you guys like to read!!

With Love,

Amber

The Truth Behind the Gluten-Free Diet Part 1

To avoid making one very long post, due to all the Information out there on the history of gluten and how it’s dietary use has changed In the last 76+ years, I will divide this into two blogs. Past and present.

So here we go……

Gluten, one simple, short little word that has become the center of many debates and conversations over the last few years! But honestly what is GLUTEN?? A concise definition would say that Gluten is a family of proteins found in grains like wheat, rye, spelt, and barley. Gluten free diets have been around for many since the 1940’s or earlier. However, at that time they were only used as a type of medical treatment, usually for those linked with Celiacs Disease. Over the last 3 or 4 decades research has been done regarding the gluten-free diet as a medical treatment for those with celiac, and as a choice for those without a sensitivity to gluten. . And interestingly enough it’s been found that if people who are not gluten intolerant choose to eat a gluten-free way of life their health could actually be negatively impacted. We have also found that there is a direct link in gluten and inflammation levels in the body. Gluten is so much more than a simple little word.

Let’s take a look back in history, the gluten free diet actually emerged in Europe in the 1940’s as a medical treatment for children with celiac disease. Since that time it is estimated that MILLIONS of people around the world have removed some or all gluten and gluten containing foods from their diet. Many choose to do this on their own with no doctors recommendation. Until the 1970’s a gluten free diet was most commonly seen in those who had celiac disease. Which is a disorder of the gut where the body is abnormally sensitive to gluten. During World War 2 in Europe, people, especially children, were becoming very malnourished because of lack of access to fruits, veggies and wheat. Obviously this was not ideal and weakened the health of many. But doctors noticed that it seemed to improve the health of those with Celiacs Disease. A Dutch pediatrician, Dr. Willem-Karen Dicke, discovered that children who had celiacs were suffering much less during the war than they did before the war. Before the war they had an adequate source of fruits, veggies and wheat. A disease, that before the World War 2, had about a 30% mortality rate was found to no longer be killing anyone. The only link that could be found was an overall lack of availability of wheat. In fact flour that may have included wheat pre-war, was being made with potato starch instead of wheat.

In 1941, Dr. Dicke wrote and published a paper about the effects of a wheat free diet that he had observed. Following the publication doctors started to link symptoms like bloating, diarrhea, constipation, gas, pain in the stomach and nausea, to gluten

Following the observations that Dr. Dicke documented in the early 1940’s, there really was very little research on the topic for a few decades. Fast forward to the 1970’s, when scientists began to find the first signs that celiacs disease could possibly be autoimmune rather than an allergy. The 1970’s is when the research was done on how celiac develops (the pathogenesis of the disease). By the late 1970’s many studies were published on the pathogenesis of the disease, that clearly linked celiac disease with other immunological disorders. Those studies would eventually prove that celiac disease is an autoimmune disorder. Meaning the immune system attacks it’s own intestines when gluten enters the body. At this point scientist only believed that people with celiac disease could have a reaction to gluten, but the idea started to emerge that gluten could possibly impact the health of people without celiacs disease.

In the 1980’s more research was being done that showed there was something called “non-celiac gluten sensitivity.” The description of non-celiac gluten sensitivity was published in 1989 in the Journal of Gastroenterology. This specific publication discussed the stories of 8 women who complained of abdominal pain and chronic diarrhea, until they followed a gluten-free diet. These women had blood tests, and biopsies that were all negative for celiac disease. This remained a slightly confusing idea as it was showing new and different things that had been seen in previous research. It was decided at that time that those with non-celiac gluten sensitivity would be viewed as a medical condition that has the same symptoms of Celiac disease, without the immune system causing damage to their intestines. At this point in history they couldn’t be completely positive that those with non-celiac gluten sensitivity are sensitive to gluten itself. They were looking at the fact that another protein in wheat could be the problem.

In the early 1990’s celiac disease was considered extremely rare, almost nonexistent in the United States. Which was totally opposite of what was being seen in Europe at that same time. Celiacs disease was on the edge of being a total epidemic in Europe at that time. Dr. Alessio Fasano move from Naples to the Unites States in 1993 and he was shocked that the reported incidence of celiacs was so low in the US while it was so high in Europe. He found that this was partially due to the fact that research on celiac and gluten-free diets were almost exclusively being done in Europe, until Dr. Alessio moved to the US. Once he was settled in the US he began to do research to find out why the number of cases suffered so much between the US and Europe. What he found was that celiac disease was just as prevalent here in the US. The only difference was that it was basically being ignored here. He published an article about celiacs disease saying “Now you know, wherever you look for it, you find it, provided there are genes and environment triggers.” Fasano would go on to publish a paper with more data, that lead to the change in the scientific community’s viewpoint on Gluten in America.

Next time we will look at thoughts on Gluten now and how the gluten-free diet has become what seems more of a fad to many. So come back next week for part 2!

The Ugly Truth About Chronic Illness

The ugly truth…… the lives of people who are chronically ill are often not what you may think. Most suffer a lot more than they are willing to share. We fight something everyday, whether it’s pain or fatigue or just feeling bad overall. And naturally we don’t want to seem like we are always negative. We don’t want to appear like there is nothing good in our life, so often times we hide all the bad and just talk about the good.  But after awhile this gets old and too hard to keep up the lies. So we just stop talking to people and start shutting people out because if we don’t see them or talk to them you don’t have to lie about what is really going on. For a good majority of people with chronic illness even on the days when we “look and sound good,” we are still fighting some part of our disease process. There are very few days where we feel “normal.”

I recently read a statistic that said that 80% of people with chronic pain/illness will hide their pain and symptoms from friends and love ones. At first I thought this was a crazy statistic but the more I thought about it I really believe that’s true. We don’t want looks of pity or for people to feel sorry for us and by keeping things to ourselves this is less likely to happen. If we don’t share we don’t have to worry about what others will think or say about us.

It is really easy to pass judgement on someone you don’t know who looks fine. You see a overweight young women getting out of a her car that is parked in a handicapped spot, and think there’s nothing wrong with her she’s just fat! Almost all of us have all done this at some point, myself included. But we should all really think twice about spewing judgement! By just assuming something about someone you don’t know at all or someone that you are close to you make them feel badly about themselves, and make them not want to go out to do things. Just because they look fine doesn’t mean they are not fighting something on the inside. I know for me it’s easier to just not say anything about the amount of pain I live with. Simply because people will want to pass judgement on my pain, my lifestyle or how I treat my pain. But honestly it’s no one else’s business.

If you see a young person limping or parking in a handicap spot don’t always assume they are jut lazy or overweight. They could have any number of health problems that you could never see. Heart disease, lung issues like asthma or COPD, cancer, Lupus, RA etc. Same goes for anyone really, not just those that are young. I read somewhere that 80% of older people have one chronic illness, while 50% have at least two! I know how easy it is to place judgement, but until you have walked in their shoes you will never know what’s really going on in their life.

The ugly truth is that most people with chronic illness have very few really good days. Often times the bad days outweigh the good. That being said you may not know this because they don’t tell you. But it’s just the truth. Most people with chronic pain won’t ever tell anyone just how bad their pain is and how much it impacts them daily because they don’t want the judgement. In these days people hear chronic pain and automatically think druggie. What you don’t know is that many of us would rather do anything than take pain meds. If we could work a full time job and be a truly functioning member of society we would! For me personally I would give basically anything to be able to go back to working as a Nurse. I miss it ALL the time and often reminisce about the days when I was able to work. I never wanted to end up like I have. But it happens. Anyone can experience a life changing illness or accident. It’s not just a certain kind of person who these things happen to. So be mindful of that. Be mindful before you pass judgement and before you say hateful things to someone. You probably know next to NOTHING about what their life on a daily basis is like.

Pick-Me-Up, Pamper, and Prattle by Amy Nora

We will hear that taking care of ourselves can be overindulgent or that you are entitled to it in our society.  Tune out what society says, and as someone with a Chronic Illness here are the facts.  You must utilize self-care.  This means that you cannot run yourself ragged emotionally or physically.  You need to invest in emotional and physical health.  There are days that you must rest, this will prevent you from getting sick.  There are times that you will need to cancel plans; yes this is frustrating, but it is unfortunately our reality.  But, there are things that we can do to help invest into our emotional and physical health with give us strength to fight our chronic illnesses.

Emotional health can involve going out with friends, getting away to that quiet place in your home that you love with your favorite beverage, and watching HULU, Netflix, or reading a book.  (I personally prefer a book, but to each his own. 😊)  Go to the movies, take a walk in the park or around your neighborhood, go pet a neighbors cow, or look at the birds that are flying overhead.  Make sure that whatever you do brings a smile to your face, heart, and soul.  It is proven that when sick laughter causes the production of serotonin; find something to laugh about!  Watch a movie, or find that TV series that makes you laugh.  Spend time with your pet, the joy they bring to you is great for your heart and sould.

Your Physical health does not mean that you need to run a marathon.  It can be something as simple as 5 minutes three times a day of some sort of easy exercise, or if you can handle it more.  Yoga, Tai Chi, Walking, Pilates, these are all low impact exercise options that help build strength and help with mobility.  Aquatic therapy is excellent for those with joint issues.  Check with your local community centers and churches, synagogues, or temples to see if they have classes if you are not sure where to start.

Another aspect of your physical health is eating healthy.  Make sure that you are getting 3-5 servings of fruits and vegetables a day.  Try and eat a healthy balanced diet.  Yet, when you feel awful or are down it is easy to hit that quart of chocolate ice cream (I brought up chocolate ice cream because I went through the 12 step program and I still have problems.  Apparently, they frown on ice cream for 3 meals a day.) in frustration.  Between prednisone and many of the medications that we take for our diseases, weight gain is easy.  While eating healthy won’t prevent it necessarily it does make you feel better.  If you want help with dietary suggestions, check with your local hospital which normally will offer a community class or go to WebMD.com

Remember that while you cannot control everything in life, you can choose to enhance what aspects of your life you can.  Decide today to do what you can to help make a difference.  Even a series of small baby steps over times makes a huge difference.

In Lupie Love,

Amy

What You Should Know About Allergies

Most would agree that some years are worse than others, and this year Nany feel like their allergies are going to get the best of them. Even though we have seen just about every kind of weather possible this “spring,” (I won’t call it spring yet!) everything seems to be blooming already. That means that for those who suffer with allergies and chronic sinus infections, this time of year (and fall) can be very frustrating and miserable. Allergies are not classified routinely looked at or classified as a debilitating illness. However, like many others i have talked to this spring, I am starting to feel like it possibly could be in that classification. I have been doing some research on this topic the last week or more, so I wanted to share a few of the things I’ve learned.

It seems that the best place to start this article is to start with a few definitions. I want to provide knowledge for those who may not suffer or those who may not be aware of what allergies are or can be! So let’s start with what an allergy is. By definition- an allergy is when a person’s immune system reacts to some kind of foreign substance, that is know as an allergen. An allergen could be things that can be eaten, inhaled into your lungs, touched, or injected into your body! Specific response can cause anything from sneezing, itchy eyes, a runny nose all the way to severe reactions that cause hives, low blood pressure, trouble breathing and even death! Examples of possible allergens are dust, mold, trees, grass, ragweed, pollen and food allergens such as milk, egg, soy, wheat, nuts it fish proteins.

How many people suffer from allergies every year?!? Any guesses? I was shocked to find out that allergies have been found to be the SIXTH leading cause of Chronic Illness in the US alone. This can lead to an annual cost healthcare costs of an excess of $18 BILLION dollars. It is estimated that 40- 50 MILLION Americans have allergies of some kind every year!! People of all ages can struggle with asthma, allergic rhinitis, food allergies, and eczema. Asthma is said to affect more than 24 million people in the US, including more than 6 million kids.

I’m just guessing that everyone could probably name at least 5 people right off the top of your head if you were asked who you know that suffers from allergies!! One would think that due to the fact that so many million people suffer with allergies that is would be easily treated by any medical provider. While that may be true for the every day Joe who suffers from seasonal allergies. But for those who have severe allergies that don’t respond to the over the counter meds and treatment, or has allergy based asthma, a specialized doctor is necessary. A doctor who specializes in allergies and asthma would be the best person to see. Simply because these providers received specialized education and training in these conditions. They are able to perform allergy testing, accurately diagnose your symptoms, and develop a personalized diagnosis for your specific allergies and conditions.

There are two key steps in diagnosing your allergies. One would be to take a full and thorough medical history, and the the second would be doing actually allergy testing. You are probably wondering why a full medical history would be important. That’s simply because when it comes to HUMAN allergies the person’s medical history is just as important as the actual testing. The history provides a link between the test results and the actual allergies. The history can help the provider to see what allergies your family might have and to see what certain medications, in or outside settings or food seems to make your symptoms worse. While the provider is taking your history you might be asked about the following:

  • Your overall health
  • Your symptoms and if your immediate family have asthma or allergies such as skin rashes, eczema, hives or hay fever.
  • Your symptoms. They provider will most likely want to know when your symptoms occur( what you are doing and where you are at), how often they happen, what brings them on and what if anything makes your symptoms better. The allergist may also want to know about your home and work environments and eating habits to see if they might lead to your exact allergies.

After the provider has taken a very thorough history, testing will most likely be done. Allergy testing has become the gold standard in the diagnosis of allergies. Blood and skin tests are used to detect a person’s sensitivity to common allergens. They can show allergies to things like pollen, dust mites, animals, ragweed, certain foods, latex, certain trees or plants. In most cases skin tests have proven to be the most accurate and preferred way to diagnose a person’s allergies. Blood tests are generally ordered less often, but they could be used in cases of severe skin rashes, or if the person can not stop a medication that can possibly interferes with the skin testing. Allergy tests basically give reliable results that confirm information that the provider gathered while taking the medical history.

After you’ve had a positive allergy test and you and your provider are aware of what allergens you react to, it is time to develop an individual plan of care. According to the Allergy and Asthma Foundation of America there are many options for treatment depending on the specific allergy and the severity of the allergy/reaction. The foundation states that the treatment of allergies can include: avoiding allergens, medication options and immunotherapy (which can be given as a shot or a tablet placed under the tongue.

You may be thinking what I was when I read through my research, HOW ON EARTH DO I AVOID ALL ALLERGENS THAT IMPACT ME?!?!? That being said the AAFA says that the best way for a person with allergies to prevent allergy symptoms and decreased the required amount of medications is to AVOID your allergens as often as possible. They say that doing this can include removing the source of allergens from home and other places you spend large amounts of time. So if you are allergic to pet dander either remove said pet from the inside of the house or look for hypoallergenic types of animals. They also suggest routine nasal washings to help reduce symptoms brought on by airborne allergens. This can be done by doing a nasal saline rinse using a squeeze bottle or Neti Pot. (Side note if you are going to do nasal rinses you should always use only bottled water or boiled tap water. Never tap water that hasn’t been boiled)

If the avoidance technique does not work for you, there are medications available. Not everyone is okay with taking anything for allergies, simply because they don’t think it’s a big deal. However, not treating your allergies can turn into much bigger and more painful issues like sinus & ear infections. Below you will find a list of classes if medication that can be taken to help with allergy symptoms.

  • Nasal Corticosteroids, aka nose spray- Work by reducing swelling which can cause a stuffy, runny, itchy nose. This option is the most effective for those suffering from nasal allergies.
  • Antihistamines- Do just what the name says. They block histamine which is a trigger for allergic swelling. This type of meds may reduce sneezing, itchy runny noses and hives. These meds come in a variety of forms, and often time can be found over the counter as pills, liquids, melting tabs, creams or nose spray.
  • Mast cell stabilizers – This classification of meds work by keeping your body from releasing histamine (that is a cause of allergies). By blocking the production it helps with itchy, watery eyes, or an itchy, runny nose! This group is available as eye drops or nose sprays.
  • Decongestants – This group of meds works by reducing stuffiness by shrinking swollen membranes in the nose. One has to be cautious with these meds. As they can, if used more than prescribed, cause the stuffiness and swelling in the nose to worsen.
  • Corticosteroid creams &/or ointments – These products relieves itchiness and can prevent rashes from spreading.
  • Oral Corticosteroids- This type of medication has to be prescribed and may be used to reduce swelling and stop severe allergic reactions. These medications do have well known side effects so be sure to talk to your doctor or your pharmacist.
  • Epinephrine – This comes as pre-measured and also self injectable devices. This is the most important medicine to give during a severe allergic reactions (aka anaphylaxis). For this medicine to work properly it must be given/taken within minutes of the first sight of a serious allergic reaction. If you know you have a severe allergy to food, any kind of stinging insect, latex or medications, you need to make sure you always carry EPI pen with you. And that friends/family know how to use it if you are unable to.

Another method of treatment for allergies is Immunotherapy. Currently there are two types of immunotherapy that can be used to treat allergies. They are allergy shots and sublingual immunotherapy (SLIT)

  • Allergy Shots- This method of treatment involves giving injections of allergens in increasing doses over a long period of time. By doing this the person receiving the shots progressively becomes less sensitive to the allergens given in the shot! Allergy shots work best for those who have allergies to pollen, pets, dust, bees and other stinging insects and asthma. However, those who have allergies to food, feathers, hives or eczema will not likely to respond well to shots.
  • SLIT – This is another method for treating certain allergies without injections. When using this modality for treatment, an allergist will give patients small doses of an allergen under the tongue. Over time the exposure will improve tolerance to the the allergens thus reducing symptoms. This method overall is fairly safe and effective for treating nasal allergies and asthma. Currently SLIT is only available for the treatment of dust mites, grass and ragweed!

I don’t know about you but I am feeling a little overloaded at the moment. I have provided you with lots of information on allergies. I hope that my research has provided you with more information about allergies, treatment and diagnosis. I know I learned a lot. I must include this disclaimer, the information provided in this article is just for self education and gaining knowledge about allergies. That being said you should never start a new treatment method without first speaking with your doctor or getting a referral to an allergist. It is a fair assessment that many people will suffer from some kind of allergy during their lifetime. However, like most medical conditions everyone’s journey with their allergies will be different. And what treatment works for you may not work for Your kids. While doing research for this article I came across The American College of Allergies, Asthma and Immunology. They have a fabulous website that provides so much great information and is easy to understand. Click the link above if you want to learn more.

If you have any questions or comments on this post feel free to share them in the comment section below. And feel free to share with anyone who might benefit.

With Love,

Amber