Chronic Pain: What They Want You To Know

🔹The NIH reports that 25.3 Million American adults suffer from daily pain.

🔹The NIH reports that 25.4 Million American Adults category 3 Pain (on a 1-4 scale).

🔹The NIH reports 14.4 Million American Adults category 4 Pain (on a 1-4 scale).

Chronic Pain is defined as an ongoing or recurrent pain, lasting beyond the usual course of an acute injury or illness or more than 3-6 months and which adversely affects the individual’s well being.

🔹American adults with category 3-4 pain were more likely to

  • Have worse health status
  • Use more health care
  • Suffer from more disability

If the above statistics weren’t enough maybe the ones below will open you eyes.

It is said by the NIH that nearly 100 MILLION Americans suffer from chronic pain, & 1.5+ BILLION people worldwide suffer from chronic pain. Also 1 in 10 Americans report that they experienced pain daily for three months or more.

I know someone reading this is going to be thinking “Why, do I want to read another story about another “addict”?” Well, to that person I ask that you keep reading! Not all who live with chronic are addicted to narcotics and jonesing for the next high. There are SO very many of us who are NOT very far from being addicted and spend a great deal of time trying to spread the word about the use of legal pain medications. No matter how we chose to deal with the pain, we still have to live with chronic pain each and every day. Day in and day out with pain. THAT….NEVER…..GOES……AWAY….. Chronic pain is about so much more than pain meds. Honestly, it is about finding the best way for each of us to live life with chronic pain. Trying to find a way to just survive each and everyday. Trying to just get through each hour, each day, each week, each month.

Here’s a couple questions that get asked a lot! Do some choose to use legal pain medications to treat their pain, or do some choose To stay away from pain medications? The answer is easy! Yes, to both. Some use strictly pain medications, while others use a mix of holistic options and pain medications, and others chose solely they holistic methods. It’s a personal choice that only you can make for yourself. Are some getting medications illegally?? Yes! But you can’t judge all 100 million of us who deal with chronic pain in The US for the one (or more) bad apple you’ve come in contact with. You have to think about this. Would you want to live a life always in pain? Always hurting? Having to take the pain into account when planning anything, even just a trip to the grocery store because you never know when the meds might wear off or when the pain might become so unbearable that you can’t finish whatever task or outing you’re on.

I wish people would remember that I am still me. I am not lazy. I when folks(family, friends, strangers) think I am a burden. I feel guilty every time I sat no to someone due to my health. Take the time to understand before you judge-Conversation doesn’t always have to be health related. Lastly, it is not a competition who hurts more or is sick in some way. Complete strangers want to one up me at the doctors office – not impressed. ~ Tammy, Canada

People in general don’t understand pain. Pain is something you feel when you stub your toe, twist your ankle, jam your finger or even for a few short days after surgery. But in general when they think pain, they think acute pain. Until you’ve live chronic pain it’s not something you can wrap you mind around fully. You just can’t understand that it’s not something that just goes away in a few minutes or a couple hours or even a couple days. It may never go away. Ever. It may be something that we have to wake up to every day for the rest of our life.

We’re not looking for sympathy, but a little empathy would be very appreciated! ~ Amanda, Ohio

All we want from our families, friends and the public as a whole is a little empathy. We just want people around us to show that they care. That they have an interest in learning about what we are going through on a daily basis. It means the WORLD to us when people ask questions about what we are going through and what they can do to help. And it means even more when they ask how our pain is. I can’t even explain to you how much it means when someone asks that 5 word question. “How is your pain today!?”

“Even when I look normal, I am still in pain. On my worst days for chronic pain, I wore the most makeup. I put on my mask to fake being well, not fake being sick. I can’t take pain pills due to my stomach problems, so I just have to do less and rest when I am in pain. I can work hard for a few days. But then I pay for it with my sore joints and have mandatory rest for a few days” Megan ~ Georgia

There are a lot of days I spend in pain, but you would never know it. I wake up and put my “cape” on and about my day. I have a husband and three little people who depend on me to be there for them. Honestly if it were not for them I would wallow in my misery. Not every day is good, but there is something good in every day. Kyndle ~ Missouri

Megan & Kyndle hit the nail on the head when they both speak about their daily pain levels. As well as when they speak about how they deal with it. Like many, instead of saying anything they put on their CIW (chronic illness warrior) cape and fake it till they make it. There was a study done in 2012 on the Lupus Community by the American News Report. During this study this study it became clear that there is a true gap in communication between those with Lupus (and most likely all chronic Illnesses) and their families. Their study found that 87% of lupus patients downplayed their symptoms need order to not upset their family members. In many cases they don’t want to share how they feeling so they don’t have to deal with looks of pity from others. Or hear the “Oh you poor thing!” That’s not genuine. But mostly people don’t want to worry and stress their families. If they don’t tell them how bad it really is then their family won’t be able to worry as much. It’s awful that a person can’t be honest about how they are feeling and where their pain level-is at for fear of upsetting their friends and family. We (those with chronic diseases) should never have to or choose to hide our pain from anyone. But especially from those we are closest to us.

Keep in mind that of all the chronically ill patients that take pain medications only 5% become addicts. When hearing about the opioid crisis, sadly they have combined illegal and legal substances together. Most of the deaths that are occurring are those due to illegal substances. Chronic patients are being denied medications because of this serious problem. ~Amy, Michigan

The CDC just recently to release more accurate numbers than those that had been reported. In the 2018 Annual Surveillance Report of Drug Related Risks & Outcomes by The Centers for Disease Control they state that “14,487 out of a total of 325.7 MILLION people in US died from LEGAL PRESCRIPTION opioids.” That’s .000004% of the population. This is much less than the numbers we have been hearing as lately where the CDC has combined death by legal prescription meds & death by illegal illicit drugs. Is the updated number too many? Yes, honestly even one is too many. But it is not quite the problem that is it being made to seem it is. People have been using pain relieving products for YEARS, more than we can even begin to conceive I’m sure. Are the products available now a thousand (or more) times stronger than the stuff our Great-Grandparents used. No doubt! With evolution and change of society comes evolution and change in medicine. I think for most of us that is the way we would like it to be. Can you imagine dealing with all the conditions and injuries we have to deal with or potentially deal with now but only having access to the pain relieving methods that they used in 1800’s?? No, it’s not effective. Are there people who abuse narcotics? Absolutely! With just about anything you can find abuse of it in some way. With the evolution of cars comes the abuse of speed. With the evolution of technology comes cyber crimes. I digress, there always has been and always will be abuse of medication in some meaning of the word. I just wish everyone wouldn’t assume that just because you have the medication prescribed to you that you are an addict.

I never knew pain, until Lupus knocked me down and I never knew strength until I got back up” ~Christall, Missouri

Chronic Pain SURVIVORS are just that!! Survivors, because we survive each and every day to live another day to tell our tale. Myself and many other United States Pain Foundation, WEGO, Chronic Disease Coalition Advocates, and many many more Advocates work so hard each and every month to share stories of chronic pain survivors and to show that not all those who take pain medications are doing so illegally or are addicted to them. Many of us take pain medications to get through the day but many have also made the choice to use other available methods. Really we just do what we have to do to get by! We want to spread the word this month especially as September is Pain Awareness Month that there are all KINDS of chronic pain conditions. Many that you and I might never even consider. So please if you get nothing else from today I hope you get this. If you meet someone somewhere and learn that they deal with daily chronic pain don’t assume the worst. Don’t just jump to the fact that they are an addict simply because they choose to use medication to treat their gain. Or that they are going to over dose because in most cases that’s not the case. We are all just trying to survive another day with our chronic pain.

With Love,


We Can Run But We Can’t Hide……From The Flu Season

** the following is based on my opinion that those who can should get the flu shot! It’s just my opinion!

I don’t know about you but I can’t believe that it’s already time to start thinking about flu shots and flu season. It seems like it was just here!! Sadly, it was. And it is back again. As much as we don’t want to it is indeed time to start thinking about flu season. As well as how we are going to protect ourself and our families and whether we will be getting a flu shot. But really, when does the flu season truly become a worry? When does the actual flu season start in the United States? According to the Center for Disease Control (CDC), there are seasonal influenza (flu) viruses detected all year long. However actual flu cases are most common to be seen during the fall and winter. Clearly no one can predict the exact timing, duration or even the strain of the flu season. That being said they can assume when flu activity will begin and end based on previous years of data. So based on that data, in most years flu activity usually begins sometime in OCTOBER. And will peak between December and February, and crazily enough, activity can be seen as late as May! So basically, you better start planning how you are going to protect you and your family NOW. That being said let’s take a little closer look at statistics regarding flu cases and the facts of the flu shot!

The Centers for Disease Control estimates, that during the 2015-2016 flu season, 34 million people were infected with the flu, and as many as 710,000 people were hospitalized and nearly 65,000 died. That also means a lot was spent on visits to primary doctors, Urgent Cares and on Emergency Room visits, as well as on cold medicine, Tamiflu and expenses that many feel could have been avoided. In most cases Flu shots probably would have prevented some of those hospitalizations, deaths and many of other flu sufferers that suffered at home. For others like the immunocompromised, chronically ill ,elderly or those that got a strain that was not prevented by the shot, the shots are not always effective.

Flu vaccines (shots) are usually available year round. But you will begin seeing and hearing more about flu shots at the pharmacy, doctors office, or on TV in late summer/early fall and continuing through winter. The flu vaccine you got last year is not the same as the one that be available this year. Unlike other vaccines the the flu vaccines change yearly, so shots should be done annually for your best protection. Why do they change every year? Basically because the shots are made to prevent those who receive the shot from getting sick from the flu strains in the shot. That being said there are years where their predictions are not right thus making the vaccine less effective. Some years they do a really good in predicting what strains will be seen, thus what strains they should vaccinate against, and other years, not so much. Last year the vaccines were less likely to prevent the flu that was widely seen in the US, mainly because the strains in the vaccines were not the strains of the flu that were being seen in the US last flu season. As some would say they didn’t quite hit the nail on the head with that one. But in all honesty the flu vaccine is very safe and is overall the most effective means of preventing or lessening how severe a case of the flu could be if you were to contract it.

Even if you hear about getting the flu shot on the radio it from your doctor in August you don’t want to get it that early. When it comes to flu shots “too early” really is a thing, if you get it before the flu season even starts then it will not be effective and won’t protect you the entire flu season. Generally speaking you and your doctor can decide when is the best time for you to receive your shot. But the best time to start getting flu vaccines generally speaking is mid-September to early- October. On the flip side it’s never to late in the season to get a vaccine. As I said before the flu season usually ends with winter but cases may be seen through May!! So even if you’ve remained healthy but decide in January or February to get one that is okay. You will be protected the rest of the normal season and through the end of that late season as well!

The flu is highly, HIGHLY contagious!! And very VERY easily spread. Did you know that it can be spread to others who are up to SIX FEET away from an infected person sneezing, coughing or JUST TALKING!!!!! And what’s even scarier is that you or anyone can be contagious even before you start to show symptoms.

So what can you do? How can you protect yourself and others from the flu this year?!? Well, it’s actually pretty simple really. The big one is that you can wash your hands often! If you think you’ve washed your hands enough, wash your hands MORE!! You also need to avoid touching your eyes, nose, and mouth, if you do touch those areas… got it. Wash your hands! The biggest and most important thing you can do during flu season, really if we are honest anytime of year, stay home if you are feeling sick even if you think it’s much a cold. By doing this you are protecting others from the spread of the flu or any other germ or bug you might have. This may not be important for most of the population, but it’s VERY important for those who are most susceptible to the flu.

The population that is most at-risk for catching the flu, for complications of the flu and even hospitalizations or death from the flu, are those over 65, the very young (infants under 6months), as well as people like us with little to no functioning immune system. At least the immunocompromised, and the elderly can have the vaccine and have some chance at fighting off Influenza should they catch it. But anyone under 6 months does not have that chance. As infants under 6 months of age cannot be given the vaccine. But you are NEVER to old for a shot. In fact there are actually high dose shots that encourage a better immune response available for those aged 50-65 and an even higher dose available for those over 65.

One thing people don’t understand is that the flu for someone who is chronically ill or has a severely compromised immune system can be deadly. A “bug” that might put a “normal” person in bed for three or four days could be potentially deadly for someone like me. I don’t say this to be dramatic. I say this to make you think. My immune system is always busy fighting my own body and my lungs especially, so it doesn’t pick up these infections like most normal immune systems would. The normal immune system picks up the big as soon as it enters the system. But for someone with an autoimmune disease or on chemo with no working immune system that bug may never be “picked up” by the very weakened immune system until it’s way too late. So please, I beg of you, if you have family or friends who fall into the categories I mentioned and you are thinking about skipping the shot, please don’t. It’s much easier to get the shot than it is to bury your friend or family member.

I know not everyone is able to get the shot, and that’s okay. Some people have life-threatening allergies to vaccines or it’s ingredients. Others have or will develop a condition called Guillain-Barré syndrome. And newborns under six-months can’t get the flu vaccine. These groups of people have to rely on a different kind of immunity. They have to rely on what’s called herd immunity. Herd immunity is the idea when most people around them the flu vaccine, it helps to protect the family, or population as a whole.

Honestly, if you’ve had the real Influenza once you will NEVER forget it! And chances are that those who have had it will take the extra effort to get the vaccine in every year in the future. Because the flu is AWFUL! Symptoms can include, but aren’t limited to: sudden onset high fever, severe body aches, on top of all the symptoms associated with a cold. You may not be worried about getting the shot for yourself. But think about getting one for those around you.

I feel like we’ve covered enough of the the basics to get you through the first part of the flu season. It’s awful, you don’t want it. And you just need to wash your hands all….the….time!!!! In all honesty, what you need to know is that the flu ends you YOU (U). What I mean by saying that is there are two simple and easy ways to prevent influenza and the spread of the disease is to get your yearly flu shot, and KEEP YOUR BUTT HOME WHEN YOU ARE SICK during flu season. In all honesty flu shots aren’t for everyone. But if you take nothing away from everything else I have written take away this. If you live with or come in close contact with someone who is immunocompromised, is chronically ill, is elderly, or has a new born baby at home GET THE SHOT! In those cases it’s not for you it’s for them. A case of the flu might put you in bed for three days. But for a person in any one in the groups I just mentioned could die from the flu! So just think before you decide not to get the shot!

With Love,


Why Moving Your Body Really Is Important

How many times have you heard someone say you just need to ”Move your body!?” And like me you probably rolled your eyes and maybe even ignored the person who said it. And very possibly even muttered a four letter word or two under your breath at whoever said those annoying three little words, because you’ve heard it so many times!! When you live with a chronic illness most days it’s hard just to live in your body much less move it. And like me you have probably wondered why you need to do anymore than what you do on a normal daily basis! But seriously, what does it even mean to move your body anyway? What does it mean when someone tells you to get out and MOVE….YOUR….BODY. Don’t we do that all day everyday?. When we walk to the bathroom? Or roll over in bed? Does that count? How do we know what movement is enough? Or what movements count?

It is said that intentionally moving your body daily is vital for not just your physical health, but your mental health as well. It can also be beneficial for your strength, and believe it or not, even for your skin! If you get moving a little more than normal everyday, you are helping your bodies and minds function at their best. Moving your body isn’t just about getting in shape or losing weight. It can’t also improve circulation, impact the lymph system, boost your energy, as well as help to regulate digestion and elimination.

So what does it mean to move your body? Moving your body can be anything from doing yoga, stretching, lifting weights or aerobics. It doesn’t have to be an activity that you hate. It can be something fun like playing with your kids or walking the dog. It just needs to be something that gets your heart rate up. Whatever you want the activity to be is up to you.

When you move your body that gets your heart beating thus your blood flowing. By increasing the blood flow in your body exercise helps to nourish skin cells and keeps them vital. Blood is a carrier of oxygen and nutrients to working cells throughout the body, including the skin. In addition to providing oxygen to the body, blood flow also helps carry away waste products, including free radicals, from working cells. By increasing the blood flow to the liver, which is the organ that has the job of neutralizing toxins, a period of exercise will help to flush out all the cellular waste & debris out of the system. So moving your body is basically a good way of cleansing you skin from the inside out! Who knew?!?

The Lymphatic system is absolutely essential and vital to our bodies abilities to detoxify, nourish and regenerate tissues. It has many jobs like filtering out our metabolic waste and working to keep up a healthy immune system. The bodies lymph fluid flows relies on the actions of the bodies muscles and our diaphragm to actually circulate the fluid. Thus exercise has the ability to increase lymph activity by at least 10 to 30 times its activity when we are at rest. Exercise of any kind is great, but it is recommended that we try to get more vigorous exercise at least some of the time. That can be things like- strength training, cycling, aerobics, or tennis. Practicing yoga is another option for promoting lymph flow.

Exercise has also been known to boost your energy. Physical activity and exercise deliver oxygen and nutrients to tissues all throughout your body. Exercise can also helps your cardiovascular system to work more efficiently! Anytime your heart and lungs work more efficiently you are going to have more energy for your daily activities.

Exercise isn’t just good for your physical health is also has been proven to stimulate various chemicals in the brain that can make a person feel happier and more relaxed. Exercise is a really simple was for a person to boost their confidence and improve their self-esteem while reducing stress at the same time. Many skin conditions that be exacerbated by stress, like acne or eczema, so blowing off steam at the gym can help diminish the flare ups or even keep these conditions at bay.

Did you know that your intestines are actually a muscle? And just like any other muscle you have in the body and need to stay toned in order to function properly!?? When we move or exercise regularly, the flow and intestinal circulation is stimulate thus encouraging bowel regularity. The bowel has a series of wave-like muscle contractions called peristalsis that moves food through the digestive tract, but when your intestinal tract loses muscle tone, the peristalsis can become slowed or weakened and can lead to irregularity. On a different note when your bowels are more regular from more regular exercise your body is able to rid itself of toxins much more effectively, and will reduce these toxins from having to resort solely to eliminating vis the skin, which can lead to blemishes, redness or irritation.

Who know that all this happens just from moving your body?!? I know that even with my medical background I didn’t know that all these parts of the body were directly impacted from simply moving the body. It’s now more clear than ever why it really is so important for us to get out and MOVE YOUR BODY. It is clearly not just about losing weight or getting in shape. It’s about having a healthy body. So next time you hear someone tell you to get up and move! It’s truly good for you and your WHOLE BODY!!

With Love,

Amber 💜

Why I Chose To Start Blogging

I have been asked so many times over the last almost two years why i decided to start a blog by my close friends and family. These are people who knew my past and my feeling about writing. They knew that writing was never something i likes or would have ever chosen to do just for fun. That being said it didn’t shock me or surprise me that my friends and some family practically laughed at me when I said I was going to start blogging. I was a little offended because I knew why I wanted to blog and I had a goal in mind. But I also knew that I have also hated writing and haven’t really ever been very good at it. But i had to start somewhere.


In January 2017 I had a goal and a purpose in mind as to why I wanted to start writing a blog. Because of all that starting a blog about living and dealing with chronic illness seemed like the next right thing to do. Probably the biggest reason that I felt called to start a blog was simply because of how I felt when I got my initial diagnosis. I felt very alone and like there wasn’t anything out there for people like me, for people who were dealing with not one but MULTIPLE Chronic Illnesses. Thankfully I quickly found a group of people and started my support group on Facebook called Lupie Groupies, so that aspect was taken care of. But I still felt like there was something missing. After years of searching and trying to figure out what the missing piece to the puzzle was, I finally figured it out. There were no blogs out there that combined personal experience with research for the conditions that I was dealing with. Sure, there were a million and one blogs out there about each of my conditions separately but nothing I related to about the conditions I have combined. And not many bloggers who didn’t claim just a certain niche. But talked about ALL THINGS chronic illness. I felt like that this was a hole that really needed to be filled in the chronic illness community.

The second reason I decided to start blogging was simple. I felt like I brought a something totally different to the table. Not only am I a Spoonie, a Warrior, a Lupie I am also a Registered Nurse. Sadly, at this point I can no longer work as an RN but you can’t take the RN about of this Girl! So, you may be thinking how will that help? I feel like it give me a different view. A leg up up if you will. From my education and time as a bedside nurse I learned how to take research and academically written papers and bring them down to a level that everyone can understand without needing to carry a medical dictionary with m. And my readers won’t need one either. I felt this was a HUGE game charger because there is currently so much research being done, but it’s often so hard for people to understand due to the way its written. I wanted to be able to spread the research to everyone who needed to be able to read it/hear it in a way that they could understand it.

But if I am being totally honest with you (and myself), when I started blogging I did it for me. I did it as an outlet. I didn’t necessarily do it so others could read it but I knew if I was feeling misunderstood, frustrated and angry that there were probably hundreds or possibly even thousands of people who were also feeling that way! I hoped that by sharing my writing and what was going on with me, that people would see that they are not alone in their fight. That others are fighting the same or similar fight. I hoped that they could see see that they are not alone in the feeling of depression or frustration. And that they always have a whole family (Lupie Groupies on Facebook) who are always around and available to talk if they need to.

Anthony Tran,

To be frank I started blogging because I felt along in my fight and hopeless. And I wanted others to know that they don’t have to fight this fight along. I truly felt that I was called to start the blog. That it was something I needed to do. Not just for me and my journey but for each of you and your journey. I needed to start a blog all about chronic illness that combined personal testimony with research. I have never been in this for the numbers or the money. I’m always honest with you guys the money does help, but the numbers mean so much more because that means I am reaching more of you than ever imagined that I could. More of you are no longer alone in the fight because you have found this blog and that means way more than any amount of money ever could. If I can help even just one person understand their disease and get them connected to a community I have done my job! If I can provide information to people in a way that they can actually read and understand, I have done my job. Blogging isn’t for everyone, but it has made my life so much more fulfilling knowing that I have had an impact on others who are chronically ill!

With Love,


The Comment You Meant To Be Helpful May Have The Exact Opposite Impact

It’s no big secret that people LOVE to share their opinion on anything and everything. They love to chime in on everything whether it directly impacts them or not. It is just amazing though at the things people will say. It’s crazy that they think they are being helpful when in reality it’s not helpful at all. I had never really paid to much attention to what people said to me until I started living with chronic pain and multiple chronic conditions six years ago. And I still try to brush it off. But in the last six years I have heard some of the craziest things. Everything from weird natural remedies and diet changes to hurtful comments about my weight and health practices. I clearly have no problem sharing my conditions with others. In fact I chose to share my life and Health with others In hopes of spreading awareness.

📷 Ethan Hoover- Ethan[[[[[[[[[[[[[[[[
That being said some people really don’t know when to keep their opinions and suggestions to themselves. The following are some of the worst and most annoying things that people can say to someone who is living with a chronic condition.

“You are SICK AGAIN?!?!”

People will a chronic illness or those who live with an inadequate immune system are very aware of the fact that they are often sick. And in a lot of cases they feel bad about themselves due to these issues because they aren’t like others. Pointing it out might only make them feel worse about themselves because now not only are they having to change their plans and they are sick. They may feel that someone else is viewing them in a negative light.

“You’re to tired to catch a movie?!? Just a take a nap first!”

If a nap would cure the fatigue that people with chronic illnesses like Lupus, Fibro or CFS, just to name a couple, there would be a lot of naps being taken. Sadly, a nap does not help and in many cases it may actually make the person feel worse. It’s not the same kind of tired as staying up to late last night. The kind of tired we feel is an overwhelming and all encompassing kind of tired.

“You’re too young to have so many health problems. “

Most young people who are chronically ill are very aware of the things they are missing out of because of their health. They are also very aware of the fact that they are young and have the health of a 70 year old. And by saying things like this and point it out it may only make them more aware of how different they are from their peers. If they could change things and be able to be healthy they would do so in a heartbeat.

📷 Trung Thanh

“You are too young to take all these medications.”

When you are chronically ill you usually have more than one issue going on. For instance when Lupus comes it doesn’t come alone. It brings heart issues or kidney issues or lung or brain issues along with it. And all those issues require more meds. None of us ENJOY taking enough meds to choke an elephant, but it’s the only way we can function. Taking 10 medications a day is not something we woke up one day and decided we wanted to do. So please don’t remind us.

“I knew someone with Lupus and they DIED.”

WHY WOULD YOU SAY THAT?!?! Obviously we know that’s a possibility but it’s not something we want to think about. Death is something EVERYONE faces. But chronic illness brings it on so much faster in many cases. Chances are that we know someone who has died from the condition we have but we definitely don’t need you to remind us.

“You were okay yesterday”

Okay, so!?! Things change. That was yesterday and today is today! Health can change hour to hour or even minute to minute. Just because I felt okay yesterday and now I don’t feel good today doesn’t mean I’m lying. It simply means that my condition is flaring and I don’t feel good. I don’t like it but I can’t help it, so please don’t make me feel worse about it.

These are just a few of things that should you should not say to someone with a chronic illness. They may seem benign to you but may be far from that for a person living with a chronic illness. But they may be really hurtful to someone else. All I’m saying in the end is to think before you speak.

With Love,


The Benefits of Journaling

When someone brings up journaling what comes to mind?!? Is it the first diary with a tiny lock that you got as a birthday gift when you were a young girl? Or is it the the journal you kept as a teenager and hid from your siblings and patents?!? Or maybe you have a gratitude of prayer journal that you enjoy as you’ve gotten older? For me I think about all the half filled journals I have. Journaling is the best way to record experiences, ideas or reflections, or thoughts on your current health situation. I truly feel that in the age of technology that journaling is a lost art. Which makes me sad considering all the amazing things putting pen to paper can do for a person.

Matt Ragland,

I don’t know if you are like me and love buying journals and notebooks. Sadly my addictions to all things journal often leave me with a bunch of partially used journals. Truly more than I want to admit! I always say I’m going to make it a habit and journal everyday. Which I do, for a week or maybe a month. But eventually I run out of things to write. So I end up falling off the wagon and don’t write anything for a few months. Journaling is truly a form of therapy for many because a journal is a safe place where the writer can really focus on their thoughts and feelings. It is often said that journaling can help an individual gain mental and emotional clarity, validate their experiences and feelings while coming to a better understanding of themselves.

Believe it or not journaling is said to actually improve your overall health. In fact there most be something behind it simply based on the number of medical professionals, friends and family that have suggested journaling to me over the last 6 years. I’ll admit that I was skeptical and didn’t believe that simply writing my feelings and such on paper would make a difference, until I tried it. Over the last 18+ months I had to keep a pain/symptom journal for my disability hearing. I found that keeping a journal allowed me to see trends in my pain in regards to my activity or what I had been eating. The journal also helped me to accept my illness because it showed me exactly what I could and couldn’t do in regards to working and such.

There are several types or way of journaling that are each beneficial in their own way. So let’s look at each type of journaling.

1. Bullet Journal- According to Bullet Journal, ”the bullet journal is a customizable and forgiving organization system. It can be your to-do list, sketchbook, notebook, and diary, but most likely, it will be all of the above. It will teach you to do more with less.” A bullet journal let’s you be you. Most if not all of the pages are blank so you can use it to make lists, or draw, o make your own calandar/planner!! You can use all different color inks and stickers if you like. To me this is more of a planner than a journal, as you can track your finances, your health, to-do lists and all kinda of things. And I’ll be honest I’m not artistic or creative in any way so it just wouldn’t work for me as it was designed.

2. The standard journal- Like I states above a journal is basically a way to express your feelings in a personal way. It has been said that using a journal helps you to clear your mind, get your emotions in check and reduces stress. And I don’t know about you, but I will try anything to reduce to reduce stress in my life. For most this way/type of journaling is most likely to pops in someone’s head if someone else is talking about journaling. These journals come either pre-5lined for writing or with blank pages so you can draw or doodle or write whatever and however you want!!

3. A Health Journal – This can be kept anywhere. You can document everything in a standard spiral bound notebook, a journal or wherever you want. So what do you journal about your health?!? That’s the beauty of it being yours, you can document anything from mood, to pain levels, any symptoms you experience on that day, to how you are tolerating your medications. You can totally customize it to what you need or want to track. There are also a number of apps that you can use to track your health! But for me, paper is the way to go. I can easily go back and look at what’s happening so I can track trends.

4. The Graditude Journal – a gratitude journal is really exactly what it sounds like. It is a diary of things one is grateful for. These are often used by those who wish to focus their attention on the positive things rather than the negative.

Overall, journaling is important for EVERYONE young and old. It can help you relax, deal with stress or track your health. It really doesn’t matter what you use to journal in. Just put pen to paper and get to writing. I’ll be honest I was very hesitant to start journaling but it turned into a very positive and eye opening experience. There is something about getting what’s bothering off your chest (by speaking or writing) that just feels so wonderful. It’s truly like living a weight off. Both health journal and gratitude journals are so important for the chronically ill. By tracking your health you can look back and see how long you’ve been dealing with x or how long you felt like z. And it’s a great tool for your doctor as well. They only see you for 15 min (if that) every 3-6 months, so the journal shows them what has been going on. Basically what I am saying is that it doesn’t matter what kind of journal you choose to use, just put pen to paper and get those feelings out there!!

With Love,


PS: I am working to design a sheet (eventually a book hopefully) that would combine the health/ symptom and medication journal on one side and gratitude journal on the other. Is that something you would be interested in?!? Please leave me a comment down below letting me know what you think of this idea!!

Why All Writers Need Grammarly

For some lucky individuals writing comes very easily, they have no problem with grammar, spelling or punctuation. But the rest of us (my self-included) struggle at times to remember when to use effect or affect, or where to use a colon versus a semicolon. After I graduated from college in 2011 I never really thought that I would need all the information on writing and grammar that was poured into me by many English and composition teachers along the way. That was until I got the wild idea to start blogging last year. Then it was clear that I should have had more attention in those classes than I did. Over the last nineteen months, I have relied on family and friends to proofread almost everything I wrote and published. I can’t tell you how HAPPY they will be when they hear that I have found Grammarly!

What exactly is Grammarly you may be asking? Well, it is a grammar and spell check tool that is free to use. It will check your online writing and will offer corrections for any misspelled words or any grammatical errors. I have tried other tools like this and I can honestly say that Grammarly is by far the most comprehensive free tool that I have ever used!! When installed on your desktop or laptop the program can be used with Microsoft Office, Window or even Google Chrome. Of all the amazing features the one that I personally find to be most handy is that it is available for use on cell phones as well as your computer. Grammarly can be found in the both the iTunes and Android stores. I can happyily say that I will no longer be that friend with all the misspelled or grammatically incorrect texts and emails.

In the long run if you spend time doing writing of any kind you NEED this tool! Once you get it you will no longer have to be worried about what possible grammar or spelling mistakes you might have made in your writing, or missed in the proofreading phase. We are all human and are bound to make a few mistakes along the way. I have been using Grammarly now for about two weeks and I honestly can not say enough good things about it. I had been using it primarily for texts and emails, but today I used it for my first big blog post and I can honestly say that Grammarly has truly changed my writing. And given me the confidence to publish my work without asking someone to proofread it first. If you would like to check out Grammarly for yourself click here for details and to sign up for your free account.

With Love,


Our Health Revolves Around Insurance

Insurance has become a VERY widely discussed topic over the last few weeks. And in most cases those conversations are not good conversations. It seems in the last several years insurance companies have really grown and have total control over a patients treatment! They have the ability to deny procedures that the patients physician deemed necessary. They also have the power to say that patients can’t use certain medications. Whether that’s by actually refusing to pay for them, requiring the patient to try several other medications first or making their “coverage” of the medicine so poor that no one can afford to take it. Some will argue that this has been happening since the Affordable Care Act was instituted, and that may be true. But my purpose today is not to talk about or fight the political side of things. My point is to share the struggles that many Americans, especially the chronically ill are forced to face head on due to their insurance on a daily basis. As well as giving a few pointers on dealing with issues with your current & potentially future insurance carrier.

It’s no secret that medicine as a whole has drastically changed over the last few years. And definitely not for the best in most cases. The costs for medical care has skyrocketed and a big part of that is the insurance companies, who seem to be paying less, charging us more and dictating what procedures, treatments and medications we can or cannot have. I know that I am NOT the only one who is unhappy with the state of our current medical system. Or with the fact that the insurance companies have been allowed to dictate most care.

Many that I have spoken to in the chronic health community about this topic conveyed their frustration to me. Most felt frustration due to what seems to have become the norm. The issue I am speaking of is the “HURRY UP AND WAIT” mindset that has now become modern medicine. Nothing is more frustrating than being told that you could potentially have x, y or even z, only to then be told then that a pre-authorization will be required for the test or procedure needed to diagnose the problem. Getting approval from any insurance company could potentially take weeks. That is IF you are lucky enough to be approved the first time for said test or procedure. Many will be denied once, twice or more by the insurance company requiring anything from very specific documentation, to trying other treatment options. Sadly, even if you do what they ask you may still be denied. If you are approved the tests may be booked for three weeks out. So you could potentially be looking at months before any possible diagnosis could be given. I have discusses this topic with many chronically ill and they feel the same way. The fact that insurance is now controlling medicine(both actual medications and also other treatment options) is not  okay. And the fact that they are also requiring outrageous co-pays and premiums is totally unacceptable! And makes carrying insurance for many just plain impossible.

I did a little research and found that depending on your location monthly health insurance premiums vary greatly. The premium costs for a healthy 21yo range depending on location from $180 monthly to over $400 monthly. That’s not great but when you add age and any health issues the statistics show a dramatic difference in the monthly premium costs.ValuePenguin, shows how the monthly cost will increase with age. A 30yo will pay 1.135 times more, a 40yo 1.3 times more, a 50 yo 1.786 times more and a 64 yo will pay 3 times the cost of the 21 yo’s premium.  And these  rates are just a simple policy. There will be an added cost for mental health coverage as well as if you are sick and will require more care.  These number just absolutely blow my mind.

I know what you may be thinking, “Amber, you are a nurse and have worked in medicine for most of your adult life, you know how this process works.”  Yes, that is true I do know. Well, I knew how the process worked prior to the Affordable Care Act was put into place. But that has changed dramatically. The fact that insurance companies now have more control than our actual doctor in regards to what medication we can have, or what procedure will be approved totally blows my mind and makes me so angry. What ever happened to the day when you and your doctor have the final say. Or the time when a doctor could order a test and it could be done in a day or two with no fight from the insurance company. I do understand that in the long run the insurance companies “GOAL” is to reduce the number of unnecessary tests that are being done that could potentially harm the patients. And they are trying to prevent medical errors bred by disjointed or fragmented care! Some say that the insurance companies are trying to keep a look out for the patients. While that may be true the way they are going about it makes it hard for most people to understand that.

After speaking with several fellow spoonies about what they feel are the biggest struggles when it comes to insurance. The top three that were brought up were as follows:

For me the biggest issues has been having their “doctors” override the recommendations of my own dr and not approving the treatment plan that my doctor feels is in my best interest. – Jane

The insurance company won’t pay for meds that the dr prescribes unless your try X number of medications first. They should pay for all medication. -Mindy

COST!!! Private insurance is more than a house payment for some. I am a couple of years away from not being able to afford it anymore. If you don’t pay high premiums you pay high out of pocket costs. – Valerie

Tim Gouw,

After speaking to many from the chronically ill community the above topics were three that came up again and again. Leading me to believe that those truly are the biggest issues. What kind of government & companies think that it is okay to charge people premiums that cost more than a house. Simple, because they know they will pay it because their health conditions require some kind of medical insurance. The sad part is that many people have no idea how insurance companies work or how they can work along side their insurance in some situations to move along the process of getting tests or procedures approved.

I would like to give you FOUR TIPS for dealing with your insurance provider.

1. If you feel like the prior authorization, whether it be for medication or a procedure, go ahead and make a call yourself to the insurance company. They should be able to tell you what the hold up is. And if they require more documentation from your provider always ask what exactly they need so you can give that I formation to your provider.

2. Please know that if you are talking to your insurance company about it’s benefits regarding a procedure, test or medication you need and you don’t feel like it is going as well as you would like. You have the right as the patient to ask the insurance company to make a conference style call to your physician.

3. This may sound cliche but finding a doctor who is on the same page as you and will stand up for your patients rights is ESSENTIAL in the insurance fight. If you have a dr that you feel wouldn’t do those things for you it is totally 100% for you to start looking for a provider who will stand up for you and your rights.

4.  As far as the costs of premiums & co-pays go I would HIGHLY suggest that you start looking into options for the following year way in advance of the last day. This will give you plenty of time to really look into each plan, what the costs are and what is covered. I would also suggest talking to others with similar conditions and see what plans they have. By doing this you are becoming an educated shopper which gives you the information you need to pick the best options for you.

Sadly, it doesn’t look like the cost of the insurance is going to be changing anytime soon. So we as the chronically ill need to find a way to deal with the problems at hand. In the insurance game we have to be strong and not be afraid to stand up for our rights when it comes to speaking with insurance providers. We also NEED a physician on our side that will not be afraid to do the same. We also need to educate ourselves as I mentioned before. We need to make sure that we know everything we can about the options of plans we have.  By doing this you will be able to make the decision that suits you and your family best.  Chronic illness is a battle no matter how you look at it. But when you throw the insurance bone into the mix it creates many unnecessary problems. So in closing, you should always take your time choosing physicians and your insurance plan. If you and the physician aren’t on the same page then there is no way you can ever become a united front to face the insurance company.  So ALWAYS make sure you have a good physician in your corner.

I hope some of you will find this useful!

With Love,


My Open Letter To Lupus

Dear Lupus,

Back in 2012 I was happy and just going about my life and was actually very excited about where my life was taking me….

But you couldn’t leave it that way. You just had to make yourself known. You came into my life like a hurricane. You set me down a path that I had no say in and was not really ready to face. No one asked you to leave that dormant state you had been living. And you certainly weren’t given an invitation to become the center of my life. However, you did just that and in the process changed just about everything I knew and was comfortable with. 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.

📷 Hannah Busing/

Looking back, I can see that you made yourself known and reared your ugly head the first time when I was in highschool. Although no one called you by your proper name. Instead they kept telling me that I had a bad case of mono. Mono that lasted SIX MONTHS?!?! Really?!?? Being a teenager I always wondered why the simplest tasks made me exhausted and how the people around me could go-go-go for hours, when I couldn’t. It was because of you LUPUS.

You went away for several years for the most part and I was grateful. Even so, I continued to wonder through the rest of high school and college why I couldn’t be as active and involved like the kids my age etc. it was bc of you. Damn you for taking away my years when I should have been having fun!

📷 Erwan Hesry/

Finally six years ago you officially made your move. You moved in for good, and brought all your baggage. Although we never discussed this, and 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 that seems so long ago you’ve made my life or a good part of it a living hell. Because of you I have lost friends 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 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. Because of you I had to walk away from my nursing career after only 11 years. I planned on working in the medical community until I retired. But you once again had another plan. And your plan won, even though I didn’t agree. But the biggest problem I have with you isn’t related to losing my career, or friends. My biggest issue is how hard you’ve made it for me to be able to watch my sister play ball. She is one of my very favorite humans in life. And watching her pitch is one of my all time favorite things to do. But because of you I was virtually unable to do the last couple of years. Mainly due to the intense heat intolerance I developed due to Lupus. And the other issues that the heat causes for me, like headaches. And it literally has broken my heart. This summer was the last ball season of her career and I only got to see her once. I know she understands but it still hurt me so much.

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 conditions that go hand in hand with you. I can never thank you enough for your generosity. You brought all your friends (other medical conditions) along with you when you moved in. I didn’t want you and I definitely didn’t want any of them!!!

I have decided I am done, you have been “kind” enough. But now it’s is time to go away and take all the “gifts” you’ve brought with you that are also not welcomed here.

📷 Joshua Coleman/

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 friend endometriosis, carrying my own baby is no longer possible. My lifelong goal gone in a second. I have always wanted to adopt so I know that’s still an option. But it’s still not quite the same as having your own baby. But I will be greatly appreciative of any child that God gives me.

When you leave you can also take the 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. At times of big flares, illness or hospital admission my blood pressure can drop and stay in the 70’s and 80’s. Also because of you I have spent more time in the ER/Hospital in the last FEW YEARS than one person ever should IN A LIFETIME.

I’m tired of all of you. Tired of all 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 more ways than I can count. I’ve lost the majority of my local friends, I can no longer work on gaining a degree to teach nursing school because of you. You have even made it very very hard for me to hold down a job. You need to pack up and get the hell out of my life! GO. GO I tell ya!!

One thing that keeps me going is mysister’s unwavering faith in God. And her prayers. Because of her I have been able to find my relationship with the Heavenly Father again. Because of that I now 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,


Giving Up or Giving In

Giving up? Or Giving in? Have you every really thought about the difference or how either one could impact your life? I think it’s safe to say that most haven’t put much time into the meaning or impact of those two similar statements. And if they have it’s probably because they are staring adversity in the face. For anyone who has ever gotten a piece of news that was life altering, whether it be about a job, their health, or their family, giving up has probably at least crossed their mind. The same goes for anyone living with a chronic illness. The diagnosis in and of itself can lead to feelings of wanting to throw in the towel. Not to mention living with that condition for the rest of your life. Eventually we will all come to a point in life where we have to decide if we are going to give in and make changes and learn to live our life to the fullest or give up and throw in the towel!

So whats the difference between giving up and giving in? For many giving up causes them to feel as though they have failed. Like they weren’t strong enough to be able to handle the situation at hand. While giving in is more like surrendering. It is more like you are accepting that you can’t change certain things and are open to finding a way to deal with the situation that is positive and can be done within your limitations.

Lets take a moment and look at some examples of the difference.

Giving Up: “The pain is just to much! I can’t handle it. I am done trying to do anything but stay in bed.”

I know we have all felt like this from time to time and that is okay. That being said if we want to continue doing the things we like to do we have to change our mindset and put a different spin on how we look at our pain. Because for many chronic pain is going to become the new norm of sorts, so staying in bed for the rest of your life isn’t a valid option.

Giving In: “I know I cannot control my pain level as much as I would like to. I am sad and frustrated but I will show myself some grace. I will rest when the pain is bad, and do all the things in my power to deal with the pain. I know the pain may slow me down, but it doesn’t have to completely change my life.”

There are going to be days  when the pain is at it’s worst and you are going to want to give up. And that’s okay. A day here and there where we feel defeated is natural. But to live the life we want to live we have to change our mindset and not allow the pain to change the things we enjoy or who we are at our core.

Yuris Alhumaydy,

Giving Up: “I can no longer do the job I loved so much, therefore I am useless”

This is a BIG struggle for many with chronic illness. When our lives are impacted in a way that we are no longer to do the job we loved it is easy to feel useless. Although it is likely that you are your own worst critic and no one else is viewing you as useless.

Giving In: “I wish I could continue to do the job that I loved so much, but that is just not possible at this point. But maybe I can find a job that I enjoy doing, that is less physical and will not cause my disease to flare.”

Losing the job you enjoyed so much is hard and chances are high that you will question your self-worth. That’s okay for a short time and then you need to realize that you didn’t give up your job you gave in. Take some time to mourn the changes that occurred and then start looking for something you can do that is better for your health. It is likely that when you find something that is better for your health it will also be better for your psyche.

Thought Catalog,

Giving Up: “The girls are going out to dinner and dancing. I won’t be able to keep up with them dancing so I just won’t bother going at all.”

It is hard when you can’t keep up with your friends and do the things you used to love to do. We have all been this person though, we feel like since we can’t enjoy all the activities shouldn’t go at all. It is easier to say you can’t go rather than leaving in the middle of the evening when everyone is having so much fun.

Giving In: “I know I will never make it long enough to go to dinner and then dancing with the girls, so I will just go to dinner.”

Even though it often feels like we shouldn’t bother going for just part of an evening out it really is a good way to give in.  You don’t have to give up on the whole night out with the girls, you just do what is best for you. It is good for you to get out of the house and spend some time with your friends.

Ben Duchac

Don’t get me wrong, there are going to be hours, days or even weeks where you just want to give up.  You’ve had a bad day, your condition is flaring, you are in pain and crawling into bed and hiding from the world seems like the best option.  And while it is a natural reaction and okay to do for awhile. It is not good for you or your health to live in that negative space.  There are things that we will give up on, like friendships or relationships with people who didn’t care enough to stay around once you got sick.  But, that is something that we didn’t chose to give up, they did. We can never change someone else’s thoughts or feelings, and if you try chances are you will fail. In situations like that it is better to give up and move on rather than putting time and energy into a failing relationship. In the long run you have to focus on YOU and what is in your best interest. Doing things that make you happy and won’t cause your disease to flare. If that means missing a night out here and there, or quitting a job that is too hard for you to continue doing then that is what has to be done.  In the end we all need to find a way to show ourselves some grace and give in not give up.

With Love,