A Day In The Life…..Chronic Pain

Co-written by Amy Nora

Chronic Pain… is just that. It’s chronic, meaning it’s something we live with ALL the time. It is not the same as stubbing a toe or knocking your knee on the corner of the table.  There is no cursing or exclamation of words and a few minutes later life is perfectly normal and you are moving on.  Nor is it like breaking a bone, wearing a cast and being done with the pain and annoyance 6 months later. Chronic pain forces you to live differently.  Life becomes methodical, more deliberate in the actions we take, and how we live our lives.  This includes the simple things like getting out of bed, going out with friends, cleaning, or trying to cook a meal.  You live you life in pain; therefore, you come to accept various levels of pain as normal.  This does not mean that you would constantly rate your pain a 10/10, you may rate your pain as a 2/10.  However, you had to stand and make a sandwich so now that has spiked to a 7/10.  This is a fight fought daily by millions of Americans with degenerative diseases or chronic medical conditions.

I wanted to give you all a look into a day in life of living with chronic pain. But I decided to go about it a little differently. My friend and frequent contributor Amy Nora and I will both be sharing our views of what like living with chronic pain is like. As living with chronic pain can look very different for different people.

Amber’s Story

I feel that there is so much negativity in news about pain and pain medication these days with all the issues with the changes in the rules and regulations with narcotic prescriptions. There are people killing themselves because they can no longer receive their meds. Others are being fired from their Pain Management Doctors because they don’t take their pain meds frequently enough. We have all heard the stories. But I don’t want to focus on THAT today. I want to bring light to what a real day of someone with chronic pain is like. I want to talk about what a day with multiple conditions that cause chronic pain can be like. I think many people have a stigma in their mind that people with chronic pain take their pain meds and may have some pain everyday, but most of their day is spent doing what they want with no big issues. Just so we are all on the same page here’s a point of reference: besides taking pain medication I also use a combination of heat, hot showers, massage, muscle rub and yoga to treat my pain. I do suffer from multiple chronic illnesses that cause chronic pain, I live daily with Lupus, Fibromyalgia, Debilitating Migraines, Endometriosis, Interstitial Cystitis as well as undiagnosed chronic back, hip and sciatic pain.

For most people when the alarm goes off or they wake up, they probably start going through the day ahead in their mind. As far as what they have planned, what’s scheduled, what they are making for dinner etc. For me and those with chronic pain the first thing I do when I wake up is lay in bed for about 15 minutes let my body wake up so I can assess my pain. I have to lay there for a little while to let my body connect to my brain so I can really take account of how I am feeling.  I generally start at my head and work down. This morning for example, I started with my head, and the pain was like a 2/10. Continued down to my throat, neck and glands because I have been fighting a cold/sinus infection, that was like a 2/10. Then down to my shoulders, elbows and hands. Left elbow was a 4/10, still not sure what that was about, but it has been happening a lot lately. My hands, about a 4/10 as well. So I start doing some stretches to see if they are just stiff or if they are going to hurt all day. They seem to be stiff and the pain seems to ease with stretching, so that is a relief. Down to my belly, cramps are like a 6/10 as endometriosis causes MEGA cramps when its time for your cycle. My bladder is probably an 8/10, because I didn’t wake up all night and it feels like it is ready to explode. My low back is a 6/10 as is my left hip, and for the first time this week I didn’t wake up with any sciatic pain or pain in my left calf. Which has been very painful everyday this week. Overall, I would say my pain would be about a 6/10 this morning. So now that I have assessed the pain that I woke up with, now I have to decide what I want to do about. Do I go ahead and take something before getting out of bed, or do I wait and see how things go as the morning progresses? That is sadly the question I address each and every morning after I wake up.

Generally, my rule of thumb in the morning is that if my overall pain is over a 5/10, I go ahead and take something for the pain. I have learned that if I don’t the day is NOT going to get better. And I will most likely not be able to get the things on my to-do list done. Or at least not until later in the day. So this morning that is exactly what I did, I took something for pain got out of bed and did my morning stretches that allow me to be able to move in the morning.  Without those stretches, thanks to the fibromyalgia I would not be able to move first thing in the morning.  I won’t bore you with the exact play by play of my day. But at each step of the way I have to decide if I can complete this task or if I should wait and attempt it later. This morning after getting dressed and having breakfast, my first task on my to-do list was cleaning my bathroom, I knew I didn’t feel like it but it can only be put off for so long. For most able-bodied people they could probably go in and get it done all in one fail swoop. For me however, it takes several steps. Due to my pain and fatigue, any multi-step project will almost always require several breaks. Just to clean my small bathroom this morning I had to stop and rest FOUR TIMES!!!! And it took me over FORTY FIVE MINUTES. Even with the breaks, I still had to lay down with my heating pad on my back and abdomen for about 30 minutes before I could go on to my next task.

I continued on with my day the same way as above. I vacuumed and then had to rest and use the heating pad. Then I did some laundry and had to rest. After eating lunch the pain has escalated again to about a 7/10 so I had to quit what I was doing and lay down. Completing simple tasks is no longer simple. It has to be well thought out and planned. That is generally how it goes for most people with chronic pain/chronic conditions. I can no longer just complete a task without resting or taking several breaks. Things that used to be simple and easy are no longer so easy. Everything that is done has to be well thought out.

I miss my time out with friends and family. But a night out or even time at home with friends or family for dinner and a movie requires major planning. Over the years I have learned that if I want to spend a day out of the house no matter what I am doing I better prepare. I need to make sure I rest all day the day before, and maybe two days before. And I know that I will most likely be in bed and doing nothing for several days after. For what seems like a normal day out of the house shopping or an evening out to dinner and a movie to an able bodied person is much different to someone with chronic pain. For example, last week, my little sister played in her last competitive softball tournament. And I just simply wasn’t going to miss it. Sadly, I knew I was going to pay for it because I didn’t feel good going in and it was 95 that day. (People with lupus simply do not do well in the sun.) So I planned ahead and took it easy the day before, and stayed in bed till the last possible minute the morning of, got dressed, and got in the car for the 45 minute trip. I was already hurting (at about an 7/10) by the time we got out of the car, and at that point we still had about 15 minutes to go before the 75 minute game would start. I had taken my pain medication before I had left the house but it wasn’t doing much to relieve the pain. I made it through the game, a quick lunch after the game with the family and the 45 min drive home. After my shower, a COLD shower, I crashed. And I certainly paid for it the next couple of days. Everything you can imagine hurt, my back and hip from sitting, my head from the heat. And just about every joint you can name. I really was hardly able to get out of bed the next day because the pain was so severe. That being said I wouldn’t have changed it for the world. I got to see my sister play one last time. I would have done it 100 times over just to be there especially knowing how happy it made her that I was there to see her play.

If my pain is tolerable and I actually get out of the house like I talked about above when I attended my sisters game. Usually as soon as I get out of the house I am counting down the time until I can get back home to my bed and my heating pad. Generally I can’t focus on whatever I am doing because my pain is such a point of focus. I do enjoy getting out of the house but I can’t help but think about how much I am going to pay for leaving the house. So sometimes we have to pay for the good things in life. It shouldn’t be that way but it just is. We shouldn’t have to deal with all we do, but we do and we learn how to deal with the hand we were given.

Amy’s Story

I had my first experience being treated as a drug seeker this week, which I will tell you about in just a second. But I first want to give you a little backstory. Only a few months ago my family moved to a new state leaving behind the doctors who had treated me for many years. Knowing there has been so many issues with pain and pain medication, on my first visit I brought all of my medical records with me. In the state I moved from, the doctor treating the source of your pain would be the one that prescribed your pain meds.   I discovered that my new Rheumatologist does not write pain meds.  I take a rather mild medication; however, he preferred that my PCP write for anything related to pain.  I use a combination of physical therapies, yoga, tai chi, breathing exercises, rest, heat, massage, and tears to handle and tolerate pain.  Meds were a last resort for me.  In fact, this was a decision that was not taken lightly, and very seriously discussed with my previous doctor.  When I went to my new PCP to get the medication, I was promptly given a long lecture on how doctors are monitored and restricted, and how they are not allowed to write too many of these prescriptions.  They did not look at the scanned records that are in their system, they did not call my rheumatologist.  I was lectured.  I was informed that I had to go to a second doctor to get pain medication, because that practice encouraged doctor shopping.  Something the medical system here should know and discourage; however, this was their policy so I was being forced into this practice not by my choice but by their policy.  A prescription was finally sent to the pharmacy which I picked up the next day; only I discovered the prescription was for THREE DAYS of the medication.  I do not take the max prescribed, I do the best I can because there are no therapies left on the market for us to try.  We are at the end of the proverbial rope.  Asking for help once in awhile should not result in being treated like someone with a contagion that will cause deadly harm.  I feel like physicians are pushing patients into medical marijuana (legal in my state) and can see why patients feel forced to seek illegal options.  When you deal with chronic pain, you learn quickly what things will exacerbate it, what things you do that will make you pay a little bit of a higher price, and things you can do to help here or there.  I have Lupus, Rheumatoid Arthritis, Sjogren’s Syndrome, debilitating Migraines, Epilepsy, and Fibro.

If I am lucky, I wake up and think that my eyes might open properly the first time.  My dog is a service dog and has been trained to help gently wake me.  Part of this is because of pain, but also if I am jarred awake it is a promise of a day with a horrible migraine.  I begin taking stock of what is alive or asleep or wishing it were dead on my body.  One thing with RA is morning stiffness, so often you don’t allow you initial impression of the day define you.  I roll out of bed and hope I don’t actually fall.  The first 15 minutes of the day moving is generally agony; an 8/10 because your muscles and joints have no idea if they even want to move.  This does not include all of the other fun stuff like cognitive dysfunction (you can’t think clearly) or your eyes don’t actually focus (thank you Sjogren’s).  After 15 minutes, sometimes 30 minutes, you have an idea of where you are going to hurt the worst for the day and what you will be dealing with.  Normally, I know that my knees, hips, and lower back will always be a 5/10 and that is just what it is.  If I having a migraine, I automatically medicate for that, and if the rest of my joints are above of 6/10 I will take medication to help with that.  This is when two things hit me simultaneously.  My need for coffee or tea and also what will I be able to do today?  Is it a stuck in bed day?  Maybe I can do a couple things, but I will have to depend on my cane?  Oh, it is a good day.  I can walk around and get two or three things done and just rest in between and after.

I had one day recently when I got really ambitious.  I wanted to get sheets, blankets, and clothes washed and dried in the same day.  That morning my pain started at around a 5.5/10.  My energy was pretty decent, I had a plan of action in place and life was good.  You become a bit of a master planner with chronic pain and any chronic illness.  I have learned that I can have the best plan, and it will go straight down the toilet.  I started with the regular clothes.  Just the act of getting them moved from the washer to the dryer, using my laundry aid, escalated pain to an 8 and delayed me getting to my next load for an hour because my legs and back gave out and I was unable to tolerate the simplest actions required to put a load of laundry in.  Sadly, this was with pain medication on board.  My goal was three loads of laundry for the day.  To an able bodied person, that may seem like nothing, for me to complete that in one day would have made me feel like I had just climbed Mt. Kilimanjaro.  When you have a chronic illness that no longer is how life happens.

For me, time with friends is one of the most beautiful and precious things.  It also is the one thing you lose that people don’t understand about you.  When first diagnosed I thought that I could just power through, now I have learned the price I pay.  Last week I went to the movies with my sister and niece.  I wanted to see Mamma Mia 2, they did too quite frankly.  It was girls night.  I had to rest 2 days prior.  The night I went I almost collapsed going into the theatre, and I did collapse coming out.  I started the night fatigued and about a 5/10; before we left I had a slight moment where I wanted to sit down and sleep for a month but I was not missing.  By the time I got home I was about a 9/10.  I have been flaring, which in our world means additional pain, swollen and stiff joints, and fatigue since.   I would not trade that fun night though.  There is a price you pay for all of your time.  I know with this post, I am not asking for sympathy.  But before you make a judgement, pause and maybe try and step into another’s shoes for just a moment.

Even our families and closest friends don’t always understand. Chronic pain is hard for anyone to understand because it can’t be seen. When you look at us we don’t look any different from the next women. Unless you you see us limping, walking with a cane or rubbing a sore spot you wouldn’t know we were hurting. They try to understand, and at first they do really well. But even the closest of friends or family start to get frustrated after repeated cancellations. They think back to the time they sprained their ankle or tweaked their knee, and the pain was gone in a couple weeks and they don’t understand why “a little pain makes life so hard!”

What Amy and I shared above is simply a small glimpse into the life of someone who has chronic pain. Someone who has to carefully plan each and every task they do on a daily basis. No on will never be able to explain to what it feels like to feel like your body is no longer your own. Your head and heart want to do one thing but your body says NO. No one will ever be able to explain to you how hard it is when you have to turn down your best friend for the 9th time, simply because the pain is to unbearable. No one can ever explain what it feels like to be told by the people who you are closest to to “Just take some Tylenol, and a nap, and you will be fine!” No one will ever be able to tell you what it feels like EVERY SINGLE TIME you go to a doctors office and they see that you take pain medication, and you can see their thoughts about you change for the worse. No one will ever be able to tell you how it feels to have someone tell you to “Just exercise and lose some weight, and you will feel better!” All that being said, until you have lived and walked in our shoes please try to keep your judgments about us until you meet us, and really get to know us. Yes, my pain impacts almost all of my daily life, but it DOES NOT make me who I am.

With Love,

Amber & Amy

WEGO Health Awards Nomination

I am excited to announce that I have been nominated for the WEGO Health Best In Show: Facebook & Best in Show Blog, Awards in the 2018 WEGO Health Awards.

WEGO Health is a mission-driven company connecting healthcare with the experience, skills, and insights of patient leaders. They are the world’s largest network of patient leaders, working across virtually all health conditions and topics. Click here to learn more about their Patient Leader Network

The WEGO Health Awards were created to celebrate those who tirelessly support the mission of WEGO Health: to empower the patient voice. With 16 award categories, the WEGO Health Awards are the only awards across all conditions and platforms, that recognize the over 100 thousand inspiring Patient Leaders who raise awareness, share information, and support their communities – but often without recognition.

It means so much just to be nominated. I know everyone always says that, but I really mean it. I have only been truly focusing my energy on patient advocacy work for 6-9months. It’s always been an important issue to me, going back to when I graduated from nursing school in 2007. It became even more important to me once I was diagnosed with multiple chronic illness. When I started having debilitating, and sometimes hemiplegic, migraines I experienced first hand how imperative it is for all patients to have someone else who can advocate for them in times when they are unable to do so for them-self. At that point I realized that I really wanted to do all I can to make sure people have an advocate when needed. As well as helping to educate people on their illness so they can be the best self-advocate possible.

I do want to thank Tracy Wellman (who I met in the Facebook group I started), and the anonymous person who nominated me for the WEGO Health Awards, Best In Show: Blog & Facebook. With out the communities I am a part of I would be nothing. When I had the idea to start the Facebook support group 4+ years ago, I never thought it would grow to where it has today. Today we have over 600 members and it now needs 5 people other than myself to help run the group. We have such a good group of people who are always there to support each other or just provide hugs or prayers. I am so lucky to have each and everyone of the readers of my blog and the members of my Facebook group in my life!

This year, the 16 WEGO Health Award winners will be honored at an in-person celebration in October co-hosted by the Society of Participatory Medicine at the Connected Health Conference. These conferences are so important because they provide invaluable information. As well as the opportunity to network with other advocates and bloggers.

I’m now looking to my incredibly supportive network to help endorse me for this award. There are two easy ways to endorse that only take seconds of your time!

1) You can click on my endorsement badge located on the right side bar of my blog (if you are using a computer. Or at the very bottom of the screen if using a cell phone.)

2) Click here to be taken to my WEGO Health Awards profile where you can click “Endorse” under my nominee photo. Please be sure to vote in both categories. You can only vote for each nominee once.

If I have ever supported you, made you laugh, or inspired you to keep fighting – please consider endorsing me for this award.

With Love,

Amber

What You Need To Know About Headaches……Part 3

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

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

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

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

Over the counter options for acute symptoms include:

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

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

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

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

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

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

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

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

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

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

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

With Love,

Amber

The Truth Behind Photosensitivity

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

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

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

Most Common Types of Headaches

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

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

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

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

Other Types of Headaches

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

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

Most Common Causes of Headaches

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

People often get headaches due to:

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

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

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

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

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

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

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

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

With Love,

Amber

The Question That Should Never Be Asked

Why is it when you turn 30, the only thing people can think about is when you should be getting married and having babies??? Why is 30 the magic number?!? And why do people seem to place that “burden” mainly on women?!?! Why is it that when men turn 30 they aren’t constantly asked when they will have kids?!? Once a women turns thirty its almost as though that internal clock starts ticking and all those around you can hear it. Why do people feel that it’s okay to pressure women and married couples about when they are going to have babies?!?! Some may not want to have kids, others may be waiting to be more stable in life. And some, sadly can’t have babies. But no one seems to think of the latter. They all just assume that like everyone else in the world you will conceive a baby with no problems.

I would bet that every single one of you reading this knows someone who has had trouble getting pregnant, had trouble carrying a pregnancy, or even someone who can’t get pregnant. According to the CDC 6% of women ages 15-44 in the US are unable to get pregnant after one year of trying. And 12% of women (or 1 in 8 couples) in the same age group, will have trouble getting pregnant or carrying a pregnancy to term! You may not think that this it is that big of an issue, but if you do the math, infertility impacts around 7.4 million women!

Why do I feel the need to put all the statistics in there? That’s simple! People need to realize that infertility really is a problem. Having a baby for many people is not as easy as simply being intimate with their partner a few times. For many it looks more like taking ovulation tests so intimacy can be planned during ovulation. Or taking daily injections of hormones so your body will produce eggs that can then be retrieved, frozen, and implanted after fertilization!

People need to understand that it’s never okay to ask someone when they are going to have babies. Nor should anyone ever ask a women that they don’t know “when they are you due!?” Fertility is really a personal topic and isn’t one for the family dinner table or over wine with friends. I know from experience that it is hard to watch all the people you know getting married and having kids. It’s hard to be the lone wolf knowing that you will never be able to have your own biological baby! It never gets easier to explain to people that you can’t have kids. They always want to argue and ask if you have tried x, y and z.

As far back as I can remember I have wanted nothing more than to be a mother. Sadly, the last few years have changed all that and I won’t be able to have kids of my own. In 2011 I was diagnosed with Endometriosis and have had three surgeries since, and in 2012 I was hit with the Lupus diagnosis. I know many women with Endometriosis go on to have children. But for me the combination of the two make it much to high risk. It wouldn’t be safe for me or the baby. It took a long time to come to terms with that. And for a long time I would cry when anyone brought it up. Now 6 years down the road I can talk about it without tears (most of the time). I now know that I wasn’t meant to have my own kids but that I was meant to adopt.

I guess what I want people to really understand is that it’s not okay to ask a women about when she will have babies, or when she is due. You don’t know what goes on behind closed doors. No women should ever have to feel bad saying that she won’t have children! Or that she can’t have children. And they definitely don’t deserved to be bothered by everyone all the time about when it’s going to happen. Every women’s journey is going to be different. Some women will have no problem getting pregnant, some will chose not to have kids, and other will not be able to. So just think twice before you ask someone about having children.

With Love,

Amber

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!

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.