Confessions of the Chronically Ill

Co-Written by myself & contributor Amy Nora

When you have a chronic illness like Lupus there are going to be some thing’s that you hold true. Things that you don’t share with most people, things that you know most people don’t want to know, or simply wouldn’t understand. Things that you feel people who aren’t sick would never understand. So as we have come to an end of the 2018 Lupus Awareness Month, I want to share some confessions from the chronically ill. Remember they might not be true for all chronically ill. This is based of the experiences/issues we have and deal with.

1. I often feel guilty — Some of you are probably wondering why we would feel guilty. Well, there are a MILLION different reasons. We may feel guilty that we can’t contribute to our families like we want to. Or we might feel guilty because we feel like we are a burden to our family and friends. Or because of the constants needs or help for basic daily life we need to ask of others. There are a million reasons why we might feel guilty.

2. I feel like I’m alone — Again you may be wondering how we could feel alone when we have friends and family all around us. Well, that’s simple, we may have people around us but they don’t know the struggles we face everyday. So it’s not so much that we may feel alone physically, it’s more mentally and emotionally. Because most family and friends don’t know what it’s like to live our lives, and they can never truly understand our world.  We try and protect them from what we go through, because as much as what we deal with, we also know that they feel a stress.  This can intensify a lonliness.  It creates a vicious cycle.

3. I often experience some level of anxiety and depression — There are so many reasons we may feel this way. We could be anxious because we aren’t feeling well and there’s nothing we can do about. Or because there is something coming up that we aren’t sure we have the energy or stamina for. On the other hand we could be depressed because we had to cancel ANOTHER date with a friend or our spouse. We might also be down because we feel terrible and have for awhile. That takes a toll on your mental health.  The very nature of having a chronic illness creates a constant mental battle that is medically known to alter brain chemistry.

4. I am almost always in pain — Even though you know I have pain medicine and have taken it. I am generally always hurting somewhere. NO, it’s not searing, burning level 10 pain. It’s more like a constant nagging annoying pain. Like a level 3 Pain. But it’s usually constant. And chances are I won’t say a word, and will often say “I’m fine” when asked.  Just remember, your fine and my fine are not the same.  Sometime ask, “No, how are you really doing today?  I want to know.  What can I do that would help you?”  When in pain and tired, these words are a balm physically and mentally.

5. Every good day is truly a gift —Sadly, we don’t always have a LOT of GOOD days. So when I do I may need help remembering that this day is a gift and I should take full advantage of it.  Do not make me feel guilty for having a good day, do not take my joy for this good day.  I may have to pay for this good day for a week to come or a few days in bed or on the couch with pain, fatigue, or any combo of problems including infections.

6. I don’t look sick — Nine Times out of ten you wouldn’t know by looking at us that we are sick. That our bodies are constantly at war with itself. We just look like average people on the outside, but inside we may be a disaster. Going out in public knowing that others can’t see our illness can lead to feeling alone, or being anxious.

7. I am often afraid to work, make plans or have a life — I know this one sounds silly. Why would anyone be afraid of those things? It’s simply because we never know what our body is going to do. I may feel fine at 8am, but at 11am I may feel like I was hit by a bus. Our bodies change so quickly and often without reason. So we never know if we make a dinner plan for next Wednesday how we will feel.  Every plan is made with the caveat of, “If I feel okay,” and buying tickets for an event is a terrifying exercise in wasting money and letting friends down.

8. Not all doctors understand — Sadly, this is the case a lot of the time. I don’t know how many times I’ve seen a doctor who’s not my own and they know nothing about Lupus or how it impacts a person’s life, body & health.  The American Medical Association even acknowledges that auto-immune diseases are one of the most under taught areas in medical school because of their complexity.  More times then not, as the patient you are educating the provider when you are already ill.  At best, they believe you and do some additional research quickly to understand.  At the worst, they do not listen and make medical decisions that do not help you are your condition because they do not understand fully how Lupus impacts you.  Remember, Lupus effects each patient differently.This is just a few confessions of the chronically ill. I could probably write a book on things we feel but never share. We don’t want pity so we often keep our issues to ourselves. We don’t want to be judged or looked down upon because of our health.  What we do want is for people to understand.  Just this week, Toni Braxton tweeted a picture of herself, and people were quick to make a judgement that she had plastic surgery.  No, she is on steroids for her Lupus.  Know Lupus.  Know that we deal with our body attacking us on a daily basis, and that no two cases are the same.  Know that we keep our secrets to protect you, but know those come at a cost.  So today…. We let a few cats out of the bag.

With Love,

Amber & Amy

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!

Finding God In…….Chronic Illness

A dear friend of mine, Bethany writes an awesome Christian blog, (which I’ll link at the end) and she recently contacted me asking if I would be willing to share my testimony and how I found God through my chronic illness. I was truly honored that she would think of me to be a guest writer for her blog, because she is a much better writer and her blog is so very good. That being said after the honor wore off and I stared putting pen to paper I started to wonder if I was really the best person for the job! The truth is that I haven’t had the strongest belief in God in recent years. In all honesty over the last six years I’ve really struggled with my faith. I have struggled to understand why I’ve faced so many struggles and what I did to deserve the things that have happened. I have felt at many times in the last decade that if God was truly a good God that I wouldn’t have faced the trials that I have. I wouldn’t have had to go through a bad marriage or lose my grandpa so suddenly. I definitely wouldn’t have had to live through the trials surrounding my health. But through the eyes of others and the work that he has done in my life I’ve come to realize that this isn’t true, I know that my God is good God. I still struggle daily to truly understand why things happen, but I suppose I may never completely understand.

Lets rewind and take a look at the journey that got me to where I am today. In the of Spring 2012 I was living the life that I had dreamed of. I was working as an RN, serving as charge nurse most shifts and helping to train nursing students and new co-workers. I loved my job, I loved that I was able to work three twelve hour shifts a week and that I had a job with direct patient contact. In January 2012, I was hired as an adjunct Clinical Instructor for a local nursing school and I was so thrilled because that is something I had wanted to do since I graduated nursing school in 2007. I also started working on my Masters in Nursing Education in January 2012 as well, and I was so excited to be moving toward my goal of teaching in a nursing program. My life was on track and I was happy with my the direction it was going.

Then in February 2012 all that changed. I was hospitalized for a week with a respiratory infection that no one could quite figure out. Looking back I can see that, that was just the beginning of the decline in my health. I had to be off work for a MONTH at that point because I just couldn’t breath, despite all the treatments we tried. On top of having trouble breathing, I was also always exhausted, and was dealing with so much joint pain. More pain than I had ever experienced before. That July, I was diagnosed with Systemic Lupus among other things. Though troubling and scary, it explained so much. It explained why I had been feeling the way I had and the symptoms that no one could ever figure out that I had experienced over many previous years. In the months and years following my Lupus diagnosis I was also diagnosed with so many other life altering diagnosis that made it hard to see any kind of future for myself. Just to name a few, I was diagnosed with Fibromyalgia, Endometriosis, Interstitial Cystitis. Not to mention the migraines that morphed into hemiplegic migraines in 2016. Following the Lupus diagnosis it became clear that I wasn’t going to be able physically to continue working as a nurse on the floor. And due to my health I not only had to leave my job, I had to step down from my teaching position with the nursing program. And I had to drop out of the masters program that I had just started. To say the least I was crushed. I just couldn’t understand why God would allow these things to happen and what I had done to deserve so many trials.

At that time I honestly couldn’t see past the diagnosis. I couldn’t understand why my ability to do the things I dreamed about was being taken away. My job, furthering my education and the ability to have children. As I mentioned above I was also diagnosed with endometriosis. Having Endometriosis along with Lupus has made it so I will never be able to carry my own baby, which is something I have always wanted more than anything! As long as I can remember I have dreamed of being a mom and all the things I would do with my children. And all that has been taken away. I do hope to adopt one day if I get to a place where I can care for another person. At that time though I couldn’t fathom what I could have possibly done to deserve what was happening.

In the months following my diagnosis I really began to struggle with my faith. Even though I grew up in church and knew all the teachings of the Bible, I still struggled. I stopped going to church and just couldn’t understand why a God who was supposed to be a caring and loving God would let all this happen! I couldn’t see past the present to see what he was working on for my future.

I spent so much time the first couple of years following my diagnosis praying to God, yelling at God, and asking simply asking why, before the plan God had for me finally started to become clear. My world as I knew it had essentially came to an end or so I thought. I was no longer able to work the job I loved, my most recent relationship had come to an end, and people who I felt were life long friends just up and walked away, saying they couldn’t handle the changes I was forced to make because of my declining health. I knew what I needed but I couldn’t find it. I knew I needed to find support in people who were or had gone through the things I was dealing with. I needed a place where I could be totally open and honest about how I felt and what was going on without fearing judgement. Because so much of the time people who don’t have chronic health issues can’t really provide the kind of support needed.

I searched and searched for a place I could go for support. Someplace I could go and talk to others who were living through the same issues that I was. A place where I could go and openly express my feelings without being judged, and also a place where I could find information on the issues I was dealing with. I looked for local resources and online resources, but I couldn’t find a place where I really felt comfortable. After spending time searching, it became clear to me that I was supposed to create the place I had spent so much time looking for.

After I realized that I was supposed to create this place of solace and education that I had been looking for. After I finally came to the realization I spent a lot of time researching support groups & educational groups. I wanted to find out what made these groups successful, and what made them flourish. In the weeks after I realized Gods plan for me I spent a LOT of time praying that God would help me create the place I had been longing for. And he did just that.

I recruited a few of my fellow Lupies (aka someone with Lupus) to help me and we created a Lupus & Chronic Illness Support Group on Facebook. A group called Lupie Groupies. My friends and I created a group where those of us dealing with chronic issues could go and be real. A place where judging others for their thoughts and feelings is NOT allowed. A place for those who were newly diagnosed, as well as for those who have been diagnosed for decades and everyone in between. A place to find education on their conditions and as well as information on treatments.

At first we were a very small group, but over the last 4+ years we have grown to over 600 members. When I started this journey I could never have dreamed that I could develop a support group that would grow to be so big! I have received such amazing feedback over the last four years from people in this group. People telling me that the group has given them hope, and that they have made life long friends in the group. I know for sure that I couldn’t have done what I’ve done without God’s helping hand.

I did finally figure out Gods plan and worked to implement it. But I would be lying if I said that I haven’t questioned God and his plan for me more recently. I definitely questioned my faith when I had a car accident last summer and totaled my car due to seizures, that have restricted me from driving for almost a year. And during the times I have had so much physical pain that I couldn’t see past the pain. Or when the car accident led to me losing my job. I have definitely questioned God and his plan. I think it’s only natural to struggle to see his plan when you’re life is not going the way you want. But Isaiah 66:9 has given me some peace as I’ve made my way through the trials.

Looking back I realize that God put me in situations with certain people for a reason. At the time I didn’t understand but now I know he put me in those situations and put those people in my life to help me reach my goals, and to help me get back to him! When I had to move home at the age of 31 I was devastated. But now looking back I know this was imperative for my health. I needed to be with my family so they could help me care for myself. Had I not moved back home I don’t think I would have ever asked for help, or told anyone just how sick I was. Moving back home wasn’t just essential for my physical health, it was essential for my spiritual growth as well. If my health hadn’t declined to the point I had to move back home and quit working, I don’t think I would have ever gotten back to having a personal relationship with God.

I give my 18 year old sister a lot of credit for helping me to get back to the relationship I now have with God. She is an amazing young lady and she has been such a blessing to my life in so many ways. I often feel like I am her second mother due to the fact that we are 15 years apart. She truly has the most unwavering faith in God of anyone I’ve ever known. Without moving home I would have never gotten to witness her testimony or see her constant faith firsthand. Even when I felt my life was falling apart around me she would tell me she was praying for me, and that God would make things better. Many times I blew her off and didn’t think much of it. But in the last 6 months I’ve seen God work in her life and in mine. He has helped both of us get through trying times, and brought the two of us closer together. None of that would have ever happened had I not been sick and had to move home.

My relationship with God has changed so much in the last few months. I have seen his work first hand and I have seen his work in others. I have not officially gone back to church, mainly due to fear of catching something from the large crowd. But I have gotten back to watching the weekly sermon online, and worshipping at home. I can honestly say that since I have gotten back to church and back to talking to God and praying that my outlook has changed. As sad as I am that I may never get back to working as a full time RN, or getting to fulfill my career and educational goals, I have come to terms with it. I know there is always a reason for the things that happen in my life. Even though I may not be doing what I thought I was supposed to be doing or impacting others lives the way I thought I would. God has showed me that through my work as a chronic illness blogger and through my Facebook support group I can still have an impact on people’s lives. My life may not be headed in the direction I would have chosen 5 years ago, through Gods work in my life I have found to raise awareness and provide education on health issues. And quite frankly I am lucky to just be alive. My testimony has certainly been a rocky one but I can truly say I have found God through my chronic illness!

With Love,

Amber

Home

Relieve Knee Pain Naturally With The WellWrap

This post may contain affiliate links

Everyone deals with joint pain of some sort from time to time, especially as we get older. When I was in the fourth grade I was playing softball and as I rounded third base my right leg went one way and my knee went the other. That was some of the worst pain I have ever felt. I saw a surgeon and he told me that I had torn my Meniscus, sadly it wasn’t torn enough for them to do surgery. So over the years I have reinjured that same knee many times, in eight grade when I was a cheerleader, in high school during PE and most recently last August when I had a car accident. Over the span of the last 24 years I have tried everything to deal with the pain in my knee. I have tried many different types of braces as well as over the counter and prescription medications and nothing has really done the trick long term. The best luck I have had is with medication. Including prescription pain medications, which is not the ideal way to treat this pain. As of late I have been looking for a better way to treat the pain without taking medication, and I think I may have found the answer.

There is a new brace coming out in this summer called the WellWrap. This brace is like no other brace you have ever seen or tried. This brace is embedded with NASA LLLT lasers that treat musculoskeletal joint pain. The embedded lasers in the Well Wrap provide stimulation to the ATP (Adenosine Triphosphate) production which will reduce inflammation and pain and will help to accelerate recovery. The brace has not been associated with any side effects, it is found to increase circulation, and decrease inflammation and is a great way to help relieve joint pain naturally.

The WellWrap can provide relief for anyone who has joint pain, from athletes with sports injuries to those who suffer with arthritis. It only requires only 7 minutes of treatment TWICE DAILY. Meaning you don’t have to wear it all the time and doesn’t require treatment outside the home. Most people who have tried this treatment modality found  pain relief after ONLY 1-2 treatments. The WellWrap will also capture your vital signs while you wear it including temperature and blood pressure and the data can be found on the mobile app.

The WellWrap offers fast acting pain relief at HOME, with no medications required. Even though this is a new product that is not yet on the market it has been trialed by many people. Below you can see how those who have trialed this product feel about the product.

Watch the video below to see exactly how the WellWrap Technology works.

I am SO excited about the WellWrap and can’t wait to try it out when it is available. The fact that I can treat my knee pain without hours of icing or needing pain medication is fantastic. Currently when my knee flares up I have to rely on the RICE (rest, ice, compression and elevation) method and rely on OTC or prescription medication. I love the idea that I can wear a brace for 7 minutes a day and be done, without spending hours treatment my knee pain.

WellWrap will be doing a crowdfunding launch this summer and will be offering a 40% discount. You can signup for information on the wrap and for information on the discount Here

Please check out WellWraps Website for more info along with pictures and video on the coming project.

With Love,

Amber

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.

And The Award Goes To……

And The Award Goes to……….ME! I was nominated for The Sunshine Blogger Award by The Scoop on Fibromyalgia and Chronic Illness AKA Jill.

After I received the Nomination from Jill, I had to look into the award. Due to the fact that I have only been a Blogger since Jan 2017 I was not familiar with it.

Here’s what I found: The Sunshine Blogger award is given BY bloggers TO bloggers who inspire positivity and creativity in the blogging community.

Due to the fact that I am so new to the blogging world, I was completely surprised and totally humbled by the nomination. Thank you so much Jill for the award!!!!

Here’s how it works…

The Rules

1.) Thank the blogger(s) who nominated you and link back to their blog

2.) Answer the 11 questions the blogger asked you

3.) Nominate 11 new blogs to receive this award, and write them 11 new questions

4.) List the rules and display the Sunshine Blogger Award logo in your post and/or on your blog.

The Questions Asked of Me, By Jill

1 What do you feel is your spirit animal or the animal that best represents your personality and why?

I really had to think on this one for a bit and do a little research before I could give a well thought out answer. I decided that my Spirit Animal or the Animal the represents me best would be the dolphin. I chose this animal because Dolphins are known for helping out others in need and keeping those they are helping safe. I feel like that defines me quite well. I chose to go into nursing so I can help others out while they are in need. And I still continue to do that with my friends and family. I do all that I can to help the people around me in any way I can!!

2. If you could have a service dog to perform only one task for you during a flare what would that task be?

I have actually been considering getting a service dog to help me and possibly alert prior to a migraine getting to the point of needing emergency treatment. But if I could pick just ONE task for my service dog to do for me would be something simple. I would want my service dog to be able to retrieve items that, for whatever I can’t reach. Whether it be that I can’t reach the item or that I am to exhausted to get up and get it. It would be nice to have a dog that could do that. I would also just love to have a dog for company,

3. What is your favorite thing to do to fill your bucket/restore your soul?

My favorite thing to do to restore my soul would be to take a LONG hot bath with bubble bath and candles, while reading a book to just relax. When I have spare money one thing that really restores my soul is a good massage and facial.

4. What is your favorite children’s book and favorite children’s movie of all time?

My favorite childhood book is “Love You Forever”. I love the words that say I’ll love you forever, I’ll like you for always, as long as I’m living my baby you’ll be.” It just had such a great message and I know that is how my Mom always feels about me and my sister. My favorite childhood movie was The Little Mermaid, for obvious reasons.

5. What is your ultimate comfort food during a flare? 

My ultimate comfort food is anything sweet, but especially Ice Cream.  If I had to choose a “real food” it would hands down be my Grandmas Potato Soup. Or her Salisbury Steak!

6.  What is the stupidest/most annoying thing a Dr has said to you?

The most annoying thing that has happened to me on more then one occasion, is when one of my doctors, who knows I am a nurse, and they choose to speak exclusively in medical jargon. Normally, I wouldn’t care but when it is me who is sick, it seems like that part of my brain doesn’t work like it should and I often don’t understand what they are saying. Please just use lay terms!!

7. What is your “weirdest” or most annoying symptom?

Currently my most annoying symptom is this rash that is all over my face, neck, scalp and behind my ears. No one seems to know exactly what it is or what is causing it. So like many other problems when you have Lupus, they say, don’t worry I’m guessing it’s JUST a lupus thing!

8. If you woke up tomorrow completely cured and healthy what is that one thing you would do that you can’t do now?

If I woke up tomorrow cured I know exactly whatI would do!! One thing enjoy so much is being able to be at the softball field for hours at a time watching my Bug (aka my 18 yo sister) doing something she is passionate about. I want NOTHING MORE than to be able to attend my sisters last season of Travel Softball this summer! I have missed so many of her games the last few years because I simply just can not tolerate the heat and sun for long periods of time. This summer will be the last summer she will be playing competitive tourney ball, so I would do almost anything to be able to watch her pitch for her last season this summer.

9. What is one habit/dietary change/lifestyle change/etc. you have made in hopes it will help with your condition(s) that you really resent having to give up or change?

That is an easy one for me to answer. I really enjoy eating and not the just crappy stuff but eating well and not having to watch the carbs or gluten or sugar level. But I know that eating a gluten free, sugar free, lactose free diet is what is best for me any my body. I know this because I have done it in the past and it really made a difference in how I felt. But I hate that I have to put so much effort into my meals and that I can’t be like my friends and family and just grab something to eat. I have learned the hard way that if I were to eat more carbs, gluten or sweets than I have been that I will spend at least a day paying for it!!!!

10. What is your favorite blog post you have written?

To date I think my favorite blog post I have written would be a tie between “How Many Times Have You Heard , JUST LOSE SOME WEIGHT,” and my open Letter to Lupus. The blog about being told to lose weight is not something that just I hear. That’s told to patients across the board. Doesn’t matter your sex, your age, your ethnicity! If you are even slightly overweight I bet at least one doctor has hit you with those words. And my open letter to lupus is one of my most honest pieces to date! I really spoke my true feelings about the disease I live with on a daily basis and I hope it was helpful in someway by showing fellow Lupies that they are not alone in their feelings.

11. If money wasn’t an issue where in the world would you pick up live!?

I think if I could live anywhere, I think I  would split my time. Living part of the year near the beach, and the rest of the year in the country with lots of land and dogs and horses.

My Nominations:

1. http://lifewithanillness.com/

2. https://dinosaursdonkeysandms.com/

3. http://www.strugglingwithserendipity.com

4. https://simplychronicallyill.com/

5. https://painpalsblog.wordpress.com/

6. http://notsomommy.com/

7. https://undeniablysara.com/

8. https://craftschronicillnessandadulting.wordpress.com

9. http://www.Achronicvoice.com

10. http://www.bethanyldouglas.com

11. http://countingmyspoons.com/

My Questions
1. If you could pick one person in your life to switch places with so they could feel how you feel for the day, who would it be and why!?

2. When you have people in your life that just can’t seem to understand you and your illness, what have you found to be the best way to explain it to them, so they understand?

4. When you have some time just for you, how do you spend that time? Do you enjoy the quiet of being alone or would you rather be with a close friend or family member?

5. What is your all time favorite TV show?

6. What is your guilty pleasure?

7. What is the most UNBELIEVABLE thing that someone in the medical profession has said to you? And what was your response?

8. What is the most annoying thing to you about living with a chronic illness?

9. If you were able to have three wishes what would they be and why?

10. What is one activity in life that you loved doing, and have had to now give up due to your chronic illness? And do you feel any resentment?

11. What blog have you enjoyed writing the most and why?

12. What is the most ridiculous comment that you have ever received on social media or as a comment on your blog?

I would like to thank Jill again for choosing me for this award!! I can’t even tell you how much it means to me due to the fact that I have only really been blogging for about 15 months.

I wholeheartedly enjoyed writing this and deciding who I wanted to share this award with. And I hope you all enjoyed getting to know me a little bit more.

With Love,

Amber

PRODUCT REVIEW- Carbon Coco Teeth Whitening System

I am sure that you’ve seen the recent big trend in dentistry all over the internet. The trend I am speaking of specifically is the use of Charcoal Toothpaste to whiten teeth and provide more benefits than other toothpastes. I hadn’t done much research on these products as I was hoping the madness would soon die down. Leaving only the top products for more studies and testimonies from customers. In fact up until a few months ago I really had very little knowledge of what Charcoal Toothpaste did and why it had suddenly become so popular. That is until a few months ago when Meg With Carbon Coco reached out to me. They offered me an opportunity to try their product in return for an honest review & that is what I am going to do today.

Being that, I had no real knowledge of charcoal toothpaste or Carbon Coco as a whole, I decided to do my research before I jumped on the bandwagon. I was honestly very impressed what I found and by their customer service. One thing I love about the company is that they offer free shipping WORLDWIDE, and they have a love it or leave it policy where they will refund your money if you see no results in 14 days. One of the big reasons I like this company and will continue to support them is that they do no animal testing. More about these offers can be found at the end under the link “Frequently Asked Questions”.

According to the Carbon Coco website “Carbon Coco is your holistic alternative to oral health. We have carefully chosen 100% natural ingredients to safely whiten and polish your teeth, strengthen the enamel, detoxify your mouth, and keep your breath fresh without any risk what so ever from harmful chemicals or additives.”

After visiting the website and researching their products And ready others testimonials, I was thrilled to get to try it. When my package arrived it contained THE ULTIMATE CARBON KIT. This particular kit comes with the Activated Charcoal Tooth Polish, the Activated Charcoal Tooth Paste and one toothbrush with Bamboo Bristles.

I will admit when I opened the Charcoal Tooth Polish and found it to be very black. At that point I was really starting to wonder if it work for me. I knew it would whiten my teeth, but I was concerned with the texture and taste. I have a major aversions to overly minty tastes and can gag easily from taste or texture. And neither of those are an issue for me.

The black powder is an oxidized version of charcoal and has been found that it works very effectively to whiten teeth. It works so well by removing external stains from the teeth without using any toxic ingredients that are often found in commercial whitening products. This way of whitening teeth helps to promote good oral health, and helps to reduce issues that can cause cavities, gum disease and bad breath. I was also presently surprised to find out that Carbon Coco is 100% natural. It also does not have any toxic preservatives that are found in other whitening products. Per the website the tooth whitener contains 100% Organic Coconut Shell Activates Charcoal with a hunt of bentonite powder and lemon myrtle.

The Carbon Coco’s Activated Carbon Toothpaste has a unique formula. The toothpaste has an Activated Charcoal fluoride free formula, that fights cavities, plaque, gingivitis, bad breath, while keeping your mouth feeling refreshed and will replace your everyday toothpaste. Honestly, I’m not sure if the rates of other toothpastes, but this toothpaste reduces bacteria build up by up to 90% for 12 hours!

I was very impressed with the packaging of this kit! Not only were the items clearly labeled, they also provide a a card that had clearly worded instructions on how to use each product. Which you can see below along with pictures of the packaging and products.

Toothpaste Packaging

I used these products religiously for about two weeks. I didn’t see any results the first few days. But by the end of the first week! I also started to notice that my breath was much fresher for much longer than any other toothpaste I’ve tried. And after a few uses my teeth felt as smooth as they do after I have them cleaned by the dentist.

I would not think twice about giving these products 5 stars. The only negative I can find with this product is the mess is makes. (And truth be told I’m sure I could brush my teeth without making as much of a mess!) One thing I did not mention is that there are different size kits that include different products. These kits can be found on the website that is linked below. Overall, I am very very happy with this product and the Carbon Coco team!! Below I am going to share before and after pictures. (It’s really hard to get good pictures of your own teeth!). I will also post links to the main Carbon Coco website as well as a link to the Frequently Asked Questions.

Carbon CoCo Website

Frequently Asked Questions

I hope that you enjoyed this review and that some of you decide to try the product!!! If you do please let me know what you think!!!

* Disclaimer: Even though your teeth will feel good, clean and smooth, while also helping to reduce bacteria, a visit to the dentist regularly is still important!

With Love,

Amber

The Strange Foe and Friend by Amy Nora

When it is 3AM and you are awake for your sixth day straight from painsomnia, it is hard to see anything good or nice in pain.  When you have a chronic disease such as Lupus, Fibro, Rheumatoid Disease, or many of the hundreds of others auto-immune diseases pain is just a part of life that sadly you live with.  Pain is a function that warns us that something is wrong.  It is our body warning us of danger in the case of a heart attack, of a catastrophic injury, or of the constant disruption of a system or systems.
This morning, I was laying there thinking that the pain in my legs had become almost a comfortable old friend.  It Is the pain I know that lets me know I have gone to far, the cliff is about ten feet ahead, but I am okay.  It is actually the oldest pain of my disease state.  Maybe that is why it is so familiar to me.  I hate it, I am by no means saying that it is something I like or appreciate as an entity within me.  Yet that leg pain is always the first to warn me that my disease is going haywire, that I have pushed to hard, that my world is not right.  In an odd sense, my foe is also my old friend.  It lets me know that my nemesis is preparing to strike.  It has become something I have learned to cohabitate with regardless of whatever else is going on.  The fire may burn hot with inflammation, but it is a familiar inflammation I know.   I know what will come next… I know what the next steps of my treatment protocol will be.
Today, I challenge you to think about what your warning symptom/Sign is… Do you have something that lets you know you are getting ready to flare?  A trigger?   Is there a common symptom or symptoms that warn of a coming flare?  Part of disease management is being able to target these.  Sometimes, no matter what you do there will be no warning.  You will wake up one morning in a flare, or you will be out to lunch and by the time you get home you will be unable to walk because of fatigue and inflammation.  But knowing symptoms of flares help prepare you to fight back against these diseases.
You can then work with your doctor to isolate these symptoms and work on a treatment protocol when these symptoms arise.  It also gives more information to your doctor as to how your disease works and acts.  This grants them more insight and information.  Remember, any information that we can continue to glean on auto-immune diseases is needed.
Knowledge is power!  Preparing yourself, Knowing what to expect and how to help yourself empowers you.
In Lupie Love…..

Dear Lupus…..

Dear Lupus,
You came into my life with asking, without an invitation. You came in and made it known by all that you were GOING TO BE THE CENTER OF ATTENTION. Who asked you to come? Who asked you to come into my body and take my life away?? I sure as hell didn’t.

Looking back you made yourself known and reared your ugly head the first time when I was in highschool. Although no one called you that. They just said I had mono forever. Six months to be exact! Who has mono for six months?!? I always wondered why the simplest tasks made me exhausted and the people around me could run circles around me for hours. I also wondered why I seem to require so much more sleep than others my age! It was because of you LUPUS.
You went away for several years for the most part and I was grateful. I was able to finish nursing school and my bachelors degree. I was able to work as a nurse for 6 years without any issues. Even though you weren’t active I was always exhausted all the time. And I could never stay up as late as people my age or couldn’t go out and “party” like others my age etc. It was all because of you. Damn you LUPUS!

Finally six years ago you officially made your move. You moved in and took up residence for good. Although we never discussed this, I never agreed to this, I didn’t give you a key or clear out a drawer for you. Instead you just made yourself welcome. Since that day long ago. You’ve made my life or a good part of it a living hell. I have lost several friends along the way because they think I don’t want to see them or that I’m just full of excuses as to why I don’t want to go out to eat or go the bar after work. Or because they simply don’t understand when I say I’m tired it’s not just lay down and take a nap tired it’s pure exhaustion. The one thing you’ve taken away from that hurts the most is the fact that I haven’t been able to cheer on my sister as she pitches and plays travel ball all summer. Because of the heat. Since you moved in you made me so sensitive to the sun and have taken away my ability to be out at the ball field without paying for it later. And it literally has broken my heart.

You came and brought along uncontrolled pain (at times), long term steroids (leading to weight gain), inability to be in the heat or sun, sleep issues, and a plethora of other very undesirable diseases that go hand in hand with you. I can’t thank you enough for your generosity. You’ve done enough. Now go away and take all the “gifts” you’ve brought with you that are also not welcomed here.

One of the reasons I hate you the most is because between you and your friend endometriosis I will no longer be able to carry my own baby. And I’ve never wanted anything more than to be a mother. But because of you, the side effects of the drugs I take to treat you, and your buddy endometriosis that’s no longer possible. My lifelong goal gone in a second.

You can also take adrenal insufficiency and Hemiplegic migraines with you. Because of the three of you I had to quit my job and move home with my parents. Because you were all being so mean. My blood pressure would stay in the 70’s and 80’s because my adrenal glands no longer act like they should. Over the last two years I have spent more time in the ER than most people do a LIFETIME!! All because of the debilitating migraines that are now a part of my daily life.

I’m tired of all of you. Tired of the medications, the depression, the anxiety and most of all the pain.  I never asked any one of you into my life, yet you are all here. You have changed my life in so many way I can’t even count. I’ve lost the majority of my local friends. I will never be able to complete my masters degree that would give me the knowledge to teach nursing school because of you!! Thanks to you I can’t hold down a job outside the home. You need to pack up and get the hell out of my life! GO. GO I tell ya!!

I live by the verses.

*Philippines 4:13 I can do ALL things through Christ who strengthens me.

*Isaiah 41:10 So do not fear I am with you; do not be dismayed for I am your God. I will strengthen you and help you. I will uphold you with my righteous right hand

With Love

-Amber

** This is my updated letter to lupus. I felt with it being Awareness Month this was a good time to update and share.