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

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 Day I was Treated Like A Drug Seeker

* This is about my personal experience not a topic to be debated about the use of narcotics.

I went to my local ER last week because I had been dealing with a migraine for almost two weeks. Sadly, is not uncommon for me to end up in the ER for a migraine. In fact that usually happens at least a handful of times every year. Unfortunately I generally end up being admitted for said migraine at least a couple times a year. So I know how things work in this ER and Hospital. Especially since I actually worked as an RN in this hospital for 9 years. But this time was different.  I had the worst experience I have ever had in that hospital. I have NEVER been treated as poorly by as many medical professionals in such a short time span as I did that visit. And that’s saying something because over the last five years I have been there MANY times and have been cared for by MANY nurses, physicians and other providers. Due to the fact that I am no stranger to the hospital, and the fact that I have MULTIPLE invisible illnesses I am not unfamiliar with being looked at like I am drug seeker.  But this visit took that to a WHOLE NEW LEVEL.

I had barely made it into the room in the Emergency Room when this male who I assumed was a nurse came in and without telling me who he was or anything his first words were “I see you take X & Y at home for pain did you try either of those?” Okay, fair question. I calmly explained that they can cause rebound headaches so I don’t always try them for headaches. He proceeded to tell me that I wasn’t going to be receiving any narcotics while I was in the ER that day.  He then went on to ask me what has worked on my migraines in the past. My mom answered that question as I was not totally able to think straight after that long with a migraine. She told him that a low dose of Ketamine has worked for me really well for me in the last. Continuing on to tell him the last time I received it the nurse had never heard of it being used for migraines either so the Doctor took him aside and showed him literature on the studies that have been done. Those studies show that Ketamine at a low dose works well for migraines. And before she finished her sentence the nurse shot that down and said there was “NO WAY” I would be getting that today because its a sedative and not for migraines.. At this point I didn’t know what to even think. Honestly, I was ready to leave and say forget it.  But that wasn’t the last run in with that nurse I would have before I was admitted.

I had a port placed three years ago due to the fact that I don’t have good veins anyway and then I took years of high dose steroids which killed the veins I did have.  So I always request that my port be accessed. He REFUSED. He said I had great veins and placed a peripheral.  I wasn’t in any condition to argue. Because he was so asinine I ended up with five sticks which should have been one.  But I did enjoy when the ER doctor put him in his place and let him know that he would in fact be giving me Ketamine for my migraine. HA!!!

I was really hoping that the Ketamine would work like it had in the past and I would be able to go home. But it didn’t……. So they called a hospitalist to come in and see me so I could be admitted to the hospital.  As he walks in the room he introduces himself and announces “I DO NOT GIVE NARCOTICS FOR HEADACHES, JUST SO YOU KNOW! Again, that word had not come out of my mouth since I arrived. He like the nurse was making an assumption of why I was there based on what he saw on the chart, without actually seeing or talking to the person behind the medical record. I really hadn’t even thought about asking for any narcotics because I know that it can actually make a headache worse. He asks me a few questions and says he won’t be admitting me its a neurology issues, and leaves. The nurse I loved so much comes back a few minutes later to tell me that they were taking me upstairs. When I asked who the admitting doctor was they told me it was Dr. Pleasant Pants that I had just seen. I was less than thrilled.

Once I was taken upstairs and settled into my room, a neurology doctor who I didn’t know showed up to see me. And AGAIN for the THIRD time in less than three hours, this doctor identifies herself and before I can say anything she says “I DO NOT GIVE NARCOTICS FOR MIGRAINES, JUST SO YOU KNOW.”  Yet again I had never asked for an narcotics or even actually thought about asking for one.  Like the two before her she was also making an assumption about why I was there and what I wanted before even seeing me. By this point in the day I had nothing to say I was so blown away that I just looked at her. I didn’t have anything to say I just agreed with her plan of care and went on with it. At that point I would have tried anything to get the headache to go away. And anything I would have said in that moment to this doctor would not have been nice or helped my case in any way.

Sadly, during my entire four day stay in the hospital there was only one nurse that would actually give me my home pain meds. In fact she actually brought them to me without me even having to ask for them. The other nurses didn’t think I needed them because I was getting “the migraine cocktail!” And that is true, I didn’t need my home meds for the headache, I needed them for the rest of my body. All the other parts that hurt besides my head.

I know, everyone is all in an uproar by the new changes that may be coming with narcotics and the doctors are being more careful with what they prescribe and to who. But anyone could look at my record if they really took the time and see that there is more than enough reason for one or even both of the medications I take. And if they looked more closely they would also see that my scripts last me on average 45 days rather than 30 because I don’t take them as often as they are prescribed. If they took time to look further than the med list they would see a person. A person who believe it or doesn’t really care for the way pain medicine makes me feel. I don’t enjoy being nauseated and itchy when I am already itchy all the time from my illness.

It just frustrates me to no end that the people in the world who have abused the drugs have totally messed things up for those of us who need them. Because people choose to take narcotics to get high it is becoming increasingly hard to get pain meds for people who really truly need them. Many of us need something to be able to get out of bed in the morning. Or to take a shower, or to do any daily task. But because of those idiots many are being refused. And sadly there have been a number of suicides in the chronic illness community due to the fact that they were refused the pain meds they relied on.

I have not shared this earlier because it took me awhile to process it. To really think about how it made me feel and how I could share this best to get my point across without sounding like I was whining. I just wish medical providers would look further than a med list. Or even the list of diagnoses. Behind those things there are people, people who never asked for these life altering diseases, people who didn’t ever do anything to deserve the fact that we are living in chronic pain. Many of us who really need the pain meds would not be able to function or have any semblance of a normal life. And if it comes to the point when none of us have access to those meds a lot of us wont be able to get out of bed, much less work and be a productive member of society. Many of us would gladly trade every last pain pill for the ability to go back to the life we had before we got sick. If i could turn in my pain meds and magically be healed i would be the first in line. Sadly, that doesn’t happen! I can’t speak for all of the people with chronic pain due to a chronic illness, but personally I have tried all other methods of pain relief. I have tried meditation, acupuncture, massage, physical therapy, water therapy, over the counter meds, pain rubs, heat, ice. You name it, I have probably tried and it just doesn’t work the same way that pain medicine does.

At this point the only thing I think we can really do is to start writing letters. Letters to those who represent us in our local, state and federal government.  I am not a political person and I normally don’t include things like this in my blog but I think this is all we have left. I think its time for a CALL TO ACTION for all of us who suffer from chronic pain. We have to be proactive and start writing letters, telling our stories and getting them out there. If we don’t share them, who will ever know what we really live through on a daily basis. They need to know that we are being treated the same as drug seekers, the same as drug addicts or not being treated at all. They need to know that we didn’t choose this life but it has happened and we are doing out best to make the best out of the hand we were dealt and having out pain medications taken away is not the way to do it.

I know in the past people have probably assumed I was drug seeking because when you present to the ER, for a migraine or back pain or a lupus flare that causes pain all over the body they can’t see it. They don’t see our pain on a lab test or an X-ray so they just assume that we are just there for the meds.  When it reality we just want to do whatever it takes to get the pain away even if that’s just a shot of steroid. Healthcare workers have sadly become so jaded by the “opioid crisis” that they can’t see past it. I know from many years of experience as a nurse that it is easy to assume that drug seeking is occurring when someone asks for pain medicine without asking any further questions.  We have to start advocating for ourselves, as I always say if we don’t advocate for ourselves no one else will.  Sadly, I did not do a good job of doing that this time around  because I felt so bad. But I wont stand to be treated like this again.

I am lucky to have a multiple people who act as advocates for me for, will stand up and fight for me when I can’t. My Mom has become my biggest advocate as she has sat in the ER waiting rooms and at my bedside hours in end without complaint. Just to make sure that i get what I need. Many times she is my voice when I can’t speak up for myself. If you are in a situation where you don’t feel as though you can stand up for yourself take someone with you. If you can, take a family member or a friend with you to the ER or to the Dr to help make sure you get the treatment and care that deserve.

If you need any help writing letters to your representatives or finding who your representatives are please let me know and I will be more than happy to help you however I can

Please take the time to also share this story in your communities. We have to get our stories out there, we have to find a way to be heard.

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

Dear Lupus…..

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

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

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

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

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

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

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

I live by the verses.

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

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

With Love

-Amber

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

Let’s Talk About……DIAMOND HEADACHE CLINIC

As you know migraines and the research for migraine treatment are two things that are very close to my heart. As many of you know I suffer with horrible, debilitating migraines. And just like many, I have suffered with migraines since I was 13 years old. That being said, I was very excited when a representative from Diamond Headache Clinic contacted me. They sent an email explaining a little about the clinic itself and included an attached presentation on childhood migraines. The information in the presentation included the types of migraines children may suffer from, as well as causes and treatments of migraines in children. They asked that I take time to view the short presentation and then to consider if it would be a good fit for this blog and if my followers would benefit from seeing it. And I did just that! I viewed the presentation and thoroughly enjoyed it. So I decided that not only would I attach a copy of the presentation at the bottom of this post for you all to see, I would also share a little about the clinic and the research that they do.

If you or someone close to you suffers from migraines and you have done any research on migraine treatment facilities across the United States, I have no doubt that you have come across Diamond Headache Clinic in Chicago, Illinois. Not only are they the largest and oldest migraine treatment facility, they are one of the most renowned in the nation. Diamond Headache Clinic’s website states that their goal is is to “Rehabilitate, restore and improve function and independence, as well as to reduce the effects of the condition. Results may differ and no claims, promises or guarantees are being made or implied about the average, typical or expected results.” Since the day the Diamond Headache Clinic opened they have been one of the leading centers for research into NEW therapies for headaches. Participating in research while you are at the clinic is NOT mandatory nor a part of all patients treatments plans. When you visit this clinic you are given an option to participate in research or trials, but it is not required. The clinic continues to lead development of new approaches and therapies used for migraine headache treatment!!

The Diamond Headache Clinic does not focus on just adults, a fair amount of their patients are this under 18! Per the clinics Website I found out that the average onset of migraines is 7 for boys and 10 for girls, although symptoms have been seen in much younger children . Until the age of 12 research shows that boys and girls suffer equally, number wise. However, by the age of 21-24 this changes and the numbers show that up 80% of those suffering from migraines are women. Most children that suffer from migraines have a family history of migraines. Research also shows that migraines effect up to 5% of school-aged children, and between 50% & 75% of children who suffer from migraines will stop having them somewhere between adolescence and early adulthood. These statistics are a BIG reason why this clinic works so hard on researching new treatment and providing treatment to those children and adults who suffer from migraines.

When Dr. Seymour Diamond, the Founder of Diamond Headache Clinic, founded the clinic around 40 years ago, he truly built the foundation for migraine treatment. This clinic is unlike any other in the United States. One of the reasons that proves this to be the case, is that each physician chosen to work at the clinic would be classified as an expert in this field. They have also been highly trained in this area due to the fact that they chose Migraine Headaches as their primary medical emphasis. The clinic is still run today like it was when Dr. Seymour Diamond built his Clinic. This is evident due to the fact that they continue to focus on the same guiding principles that were implemented by Dr. Diamond. These guiding principles focus on listening, and remaining open-minded to patients and treatment opportunities!!

For all patients a multi-disciplinary approach is in place to treat migraines. Meaning that unlike other places you won’t just be handed a prescription for a medication and told to come back in a month. They feel as though it is necessary to treat the entire body. They are able to tailor all treatment plans to THE PATIENT, not to the condition. When you go to Diamond Headache Clinic they will develop a treatment plan that caters to each patient’s individual needs, and can be implemented in an outpatient or in-patient setting depending on the patients needs, and the severity of the headache. A patient specific plan could include acupuncture, BOTOX injections, changes in diet, massage therapy, nerve blocks, and physical therapy just to name a few. The overall goal in treatment is to set up the patient with a long-term plan that encourages overall health and wellness!

After viewing the presentation and doing my research for this post, not only would I feel comfortable going, I would also feel comfortable taking my child there. The Headache Clinic‘s website provides you with everything you could possibly need to know about the clinic. It even includes what to pack when coming as an adult or as a parent/child. The website also includes a little information on how you might want to prepare your child if he or she has to stay overnight.

If you have been around this page long, you know my feelings on research and trials! As I’ve stated before, I feel like the more research that is done and the more people who actively participate in trials, the better chance we have a curing lifelong debilitating conditions! Below I have included the presentation on Childhood Headaches/Migraines from the Diamond Headache Clinic. Please take a few minutes to view it. Also, if this information doesn’t apply to you but you know someone who would benefit from it, please share it. Let’s get the word out that there is a clinic that truly treats all aspects of a migraine and is working diligently to find a cure.

With Love,

Amber

Presentation courtesy of Diamond Headache Clinic

Tips on Treatments for Migraines.

I by no means am an Expert on Migraines. But I do feel that I know quite a bit about treatment options for migraines as I have tried just about EVERY treatment known to man to get rid of mine. So today I will talk about possible treatment modalities for migraines, oddly enough while suffering from one of the worst migraines I have had in the last few weeks. But our world goes on right? From having so many I have learned that our world just can simply stop just due to a migraine. Do I do all I can to slow my world down during one? YES!!! We all have to do what works best for us to keep our world going. The things I am going to talk about are things that have been recommended to me by Medical PROFESSIONALS, and any thing I discuss should not be started into your regimen without the approval of your medical provider. This may be a little long but I get asked several times a week about what I do to treat my headaches and all of this has been or is currently part of my headache journey.

  1. Pain relievers like Aspirin or ibuprofen (Advil, Motrin IB, others) could potentially help relieve mild migraines. Tylenol can also work to help the mild migraines in some people, especially in the population of people who are on Blood Thinners and can not take medications like Aspirin or Advil.
    There are medications on the marketed that are specifically for migraines, such as the combination of acetaminophen, aspirin and caffeine which is known as Excedrin Migraine, these could potentially ease moderate migraine pain. However, none of the over the counter meds will be effective on their own for a severe migraine. And with many of the over the counter meds like Aspirin, Advil, Ibuprofen if they are taken too often or for too long at one time it is possible for them to lead to bigger problems such as stomach ulcers, GI bleeds and even Medication overuse headaches.
    There is a prescription pain reliever called indomethacin that may help diminished the effects of a migraine and is available in suppository form (not fun I know!!!), which may be helpful if you’re nauseated. Narcotic pain medications are rarely ever used in migraine treatment simply because many Providers feel like narcotics will cause rebound headaches in the long run and cause more problems than good, which is controversial to many, So I won’t go into it any further at this point
  2. If over the counter meds don’t work for you migraine than the next step is usually a medication group call The Triptans, which often used in treating migraines. Triptans make blood vessels constrict and block pain pathways in the brain. You have probably heard of them, they are medications like Imitrex, Zomig, Relpax. Triptans effectively relieve the pain and other symptoms that are associated with migraines. They are available in pill, nasal spray and injection form. The fact that they offer different forms is helpful due to the fact that if you are vomiting it is hard to keep down a pill for said migraine.
  3. If the Triptan class of drugs do not work to control your headaches and you are having to take them more than a couple times a week it is time to call your Provider again. At this point they may talk to you about how often your headaches are happening and if you have been able to pinpoint a cause. If no cause has been noted they mas discuss with you about doing some imaging like CT SCAN or MRI just as a precaution to rule out anything further that could be causing your migraines.
  4. If you have vomiting with your migraines, first let me say how very very sorry I am! I have terrible nausea and vomiting with mine. And thankfully my Providers have been nice enough to prescribe me anti-nausea meds to help when or should I need it, so don’t be afraid to ask!!
  5. Another kind of medication that your Provider may discuss putting you on if the Triptans and Over the counter meds like Aleve are not helping with the migraine is what they call Preventatives. These are medications that you take daily to help prevent your headaches from getting to the point of a migraine. However, there are requirements one must meet in order to be considered for a preventative med, which I will list below. Taking preventative medications can help to reduce the frequency, severity and length of a migraine and couple potentially increase the effectiveness of other meds used to relieve symptoms during attacks.  These medications will not take effect overnight it can take several weeks to see results. It could be recommended that you take preventative meds daily or just around your triggers. For instance if you get migraines around menstruation you might take the medication just around that time of the month for you,. Eventually if you have good results on the preventative meds your doctor may discuss tapering you off the medications to see how your headaches do without the medications.  The most common classifications of medications used as Preventative meds are Cardiovascular (heart) Medications, Antidepressants and Seizure medications. The qualifications I mentioned above are:
    1. You have four or more debilitating attacks a month.
    2. If attacks last more that 12 hours.
    3. If pain-relieving medications are not helping.
    4. If your migraine signs and symptoms include a prolonged aura or numbness and Weakness
  6. The last prescription medication I will discuss is Botox. I know you are thinking, “Wait, isn’t that the stuff that people put in their faces so they can’t move them and get no more wrinkles? Yup, same stuff! Just works a little different. I have yet to find an exact explanataion as to why it works but it does. There are some terms that have to be met before you can sign up for Botox. Here is what the Botox website says “BOTOX® is a prescription medicine that is injected to prevent headaches in adults with Chronic Migraine who have 15 or more days each month with headache lasting 4 or more hours each day in people 18 years or older.
    It is not known whether BOTOX® is safe or effective to prevent headaches in patients with migraine who have 14 or fewer headache days each month (episodic migraine).
    BOTOX® prevents on average 8 to 9 headache days and migraine/probable migraine days a month (vs 6 to 7 with placebo) after 2 treatments (at 24 weeks).”Botox website
  7. Some over the counter supplements that are often encouraged for migraine sufferers are Fever Few, Magnesium and B12, B6 and Folic Acid. Fever Few which is known as a herb used to control the pain of migrain. While Magnesium is used in hopes of preventing migraines. Some research has shown magnesium levels in the brain if often low during migraine attacks. And because magnesium is needed for a persons nerves to function properly, some think that low magnesium and migraines are somehow related. Vitamins B6, B12, and folic acid have been found that they  may reduce the frequency, severity and disability of migraines, according to new research. Daily vitamin supplements were found to produce a two-fold reduction in migraine disability.
  8. Invest in GOOD DARK SUNGLASSES- This may sound silly but you can never had dark enough sun glasses when you have migraines so invest in a good pair that is super dark and will really shield your eyes. There are multiple places to buy these but there are four good pairs on Amazon ranging in price from $49.99- $99.99, and are available as indoor and outdoor lenses!!!
  9. Another item that you can’t go wrong with and would be a great Christmas gift would be a good EYE MASK!!  These like anything vary in thickness and size and in bandwidth. You can find them at many different locations from the pharmacy to Amazon to Bed, Bath and Beyond,. The one below Is one that I recently purchased from Amazed that is desidned for those of us with migraines and has the ability to be frozen. And was only $10.
  10. If I had to pick one non-pharmacological item that has helped me the most it would be my ICEKAP!!! It is exactly what it sounds like. I hat with ice. But the ice packs are spaced properly so you don’t have to try and keep one on the front of your head and the back and keep them from sliding, It has really been a game changer. The Icekap website And last but not least Peppermint Oil. I am not big into oils but this is one things that I can carry in my purse and use anywhere when I feel a migraine coming on. And it also works for nausea. So killing two birds with one stone so to speaks with one oil. Unlike many of the other things that I have talked about. The more well known companies are the best to buy for like Young Loving because you know that their oils are 100% pure.

I hope that you find this list helpful and maybe I was able to give you a tip or two that you had not tried before. If you have any questions or comments or suggestions please don’t hesitate to leave them below!!

With Love,

Amber

Pain Medication…. The Debate

Ma’am I see you have scheduled pain medicine on your list of meds……… Yes, I take them for my PAIN….. What do you need pain medicine for????  Well, let’s see. Could it be the Systemic Lupus? Or Maybe the Endometriosis? Or could it be the interstitial cystitis? Or maybe the chronic migraines or fibromyalgia?????? 

For some pain medicine is the only way that they can make it through the day. Maybe even the only way they can get out of bed!!!  For others it’s just something they can take a couple times a week and be good. Why is it that those of us with documented conditions that are known to cause pain are still looked at like drug seekers? 
Have you ever been on the receiving end of questions about the medication you take that just gets you through the day? Do you ever feel like you are treated like a druggie or a criminal because you need prescription pain meds? 

There is nothing more frustrating to me then being looked at like I’m a drug seeker when I go in to the dr or pharmacy because I take pain medication. And heaven forbid I ever go into the ER because if a hemiplegic migraine or a horrible lupus flair, and need some relief. When that happens it’s almost for sure someone will look at me like I’m drug seeking. This shouldn’t be!!! All the people out there who have abused the system and abuse prescription pain medication have ruined it for all the rest of us. 

We shouldn’t be grouped into that category. Especially when we have multiple document conditions that can cause life altering pain. But we are. I see almost daily that there are lawmakers trying to pass a law that should prevent the abuse of narcotic pain meds. But if that happens will we stop getting the looks? Or will providers stop making us feel like we can’t seek medical treatment for fear of being treated like a drug seeker?? In my opinion no!!  It’s always going to be a problem for us. No matter what laws are passed and how much thy try to cut down on the abuse of prescription drugs I feel like we are always going to be treated poorly. It’s always an assumption that just because we take the meds we are a druggie. 

I’m not saying every doctor or nurse or pharmacy treats people like that. But I guarantee that at least 5 or more of the people who are reading this could tell us a story about how they were treated or not treated because of the medication listed on their home Med list!

How do we stop this unfair treatment? How do we stop feeling like everyone assumes the worst of us?  I wish I knew. But we need to find a way. Find a way to prove to the world that just because you take pain meds you are a seeker or a druggie. Prove to the world that these conditions that we suffer from everyday cause such pain that we need those meds. Prove to people that sometimes without those meds we wouldn’t be able to get out of bed. Or complete our daily activities. And sometimes even WITH the meds we can not complete any of our daily routines. Do we carry a sign that has a list of our conditions? Sadly, that wouldn’t help. Because if you haven’t experienced the pain of these conditions yourself you can never fully understand. 

How do we prove to the world that just because there are those scummy people who buy meds for abuse or steal meds to abuse them, that we aren’t all that way? Sadly, in this day an age there is such a high rate of abuse of prescription meds that I don’t know that we will ever be able to prove our case. According to the American Society of Addiction Medicine, Of the 20.5 million Americans 12 or older that had a substance use disorder in 2015, 2
million had a substance use disorder involving prescription pain relievers. And In 2012, 259 million prescriptions were written for opioids, which is more than enough to
give every American adult their own bottle of pills!!! 

I don’t know about you but to me that data is staggering. And the fact that Drug overdose is the leading cause of accidental death in the US, with 52,404 lethal drug overdoses in 2015. Opioid addiction is driving this epidemic, with 20,101 overdose deaths related to prescription pain relievers is beyond understanding.  I completely underatand why law makers and medical providers want to find a way to cut down on the number of people taking prescription narcotics. But what they don’t seem to understand is that there is a large population with chronic pain issues who truly require these meds. 

According to the American Academy of Pain Medicine; pain is a significant public health problem that costs society at least $560-$635 billion annually, an amount equal to about $2,000.00 for everyone living in the U.S. This includes the total incremental cost of health care due to pain from ranging between $261 to $300 billion and $297-$336 billion due to lost productivity (based on days of work missed, hours of work lost, and lower wages).  These numbers are crazy to me. Do all these people really need pain medication or are some of them abusing it? Probably a little of both.  

 Chronic Pain is a real thing and needs to be dealt with. And those who really need the meds should be able to get them without feeling like they are being looked upon negatively.  I hope and pray that there is a way for this to be done. But at this point I don’t know how to go about it!  (Okay rant over!)

If you would like to share your story about how you have been treated negatively because you take prescription meds or have requested meds because of you condition. Please place those stories in the comments or email me. I would love to read them and compose another blog post with everyone’s story. 

-Amber 
Resources:

http://www.asam.org/docs/default-source/advocacy/opioid-addiction-disease-facts-figures.pdf

http://www.painmed.org/patientcenter/facts_on_pain.aspx

But You Look Fine…..

We’ve all done it.  We’ve seen that person get out of the car at the local shopping center while parked in a handicapped spot. And thought, “There’s nothing wrong with them, who do they think they are?”  I’ll admit it I’ve thought that. And I think that’s the mentality of most. If you can’t SEE the disease it’s not there. Right?   NO Oh so WRONG!!!! Here’s some food for thought. 

So if 96% of illnesses are invisible that just leaves 4% that one can outwardly see. In 1997, there were 26 million Americans considered to have a severe disability and only 7 million of them use a wheelchair, cane, crutches or walker (U.S. Department of Commerce).  So you can only imagine how that number has increased in the last twenty years with medical advancement.  Chances are someone YOU KNOW has an illness that they are suffering from that you can’t see or may not even know about. 

So what exactly are invisible illnesses? They are conditions that you can not see by just looking at someone. These could be things such as: Anxiety, depression, mental illness, Autism, Chronic Pain, Chronic Fatigue Syndrome, Fibromyalgia, Lupus, Endometriosis, Interatitial Cystitis, Chrons Disease, EDS, epilepsy. Just to name a few. 

So how do they hide their disease and how do they feel? Here’s my story!

You may look at me and simply see a healthy-looking, overweight 30 something. However, just by looking at me you would never know the things I suffer from.  You wouldn’t know I have disabiling migraines, Systemic Lupus, Insomnia, Fibromyalgia, Interstitial Cystitis, Endometriosis, and Adrenal Inssufiency.  None of these things can be seen outwardly. 

You wouldn’t know that I am almost ALWAYS in pain somewhere. Whether it be my back or my hands or even my feet. Something always hurts even on the good days. You wouldn’t know that chances are I didn’t sleep well the night before because of said pain. And I’m so tired that it took 15 extra minutes to convince myself to get out bed. Even after taking my medicine 45 min before finally rolling out of bed.  And then I spent another hour getting through the process of showering, hair, makeup and getting dressed because I had to take 4 breaks. And by the time I’m done with all that, I really just want to get back in bed because I’m EXHAUSTED and it’s not even 8am. 
You won’t ever see me cry because I had to cancel plans for the 3rd time with my best friend. Because that is something I hide. You wouldn’t know that it rips me apart to have to stay home when everyone is out doing their daily activities. You wouldn’t know that grocery shopping is the vain of my existence. And something I have to mentally prepare for because it…..takes….so…..much……energy. And then actually putting the groceries away……that’s a whole different story. 

You will never see my utter frustration with constantly being sick. I’m sick and tired of being sick and tired. Go ahead and think what you will. “She can’t really be sick again, can she!?”  “I bet she just doesn’t want to work so she says she sick!” Let me answer those questions. Yes, if I actually tell you I’m sick. I’m sick. The rest of the time I hide my illness for fear of being judged. As for just wanting to stay home. NO. I would much rather be in the workplace than on my couch. I didn’t go to college for 6 years not to use my degrees. 

By looking at me, you would never know that I may have had a migraine for three days. And am fighting the constant urge to throw up because of the migraine. You wouldn’t know that I might be having a hemiplegic migraine and my hands are going numb, and it’s hard to talk. You might see me in public with my shades on and think nasty things about me, none of which are true. I don’t have a hangover. And I wasn’t beaten up. I simply have a migraine that won’t quit. So don’t be so quick to judge. 

To talk to me you still probably wouldn’t see any difference in me. That is until the Brain Fog hits. It’s a thing!! Much like pregnancy brain or Chemo brain. You probably wouldn’t know that I constantly lose my train thought, sometimes in mid sentence. Or that some days I spend a lot of time looking for things that are right in plain site. You will probably notice me hunting for words while speaking. No, I’m not on drugs, or alcohol. I simply have brain fog associated with my invisible illness. Remember it’s a real thing….. look it up if you like. 

By looking at me you wouldn’t ever know that often my bladder is on fire and I have to urinate all the time. And I may get up four to five times a night to do. Yes at the ripe ole’ age of 31!!   You also wouldn’t know that many days out of the month I have severe pain in my belly. Either caused by the Interstitial Cystitis or by Endometriosis!  The pain can be disabling at times. And I would like to cry and lay in the fetal position. But I don’t! You also wouldn’t know that my chance to carry my own baby is slim to none now due to my invisible illnesses. The one thing I have wanted more than anything my whole life is no longer a possibility. But you can’t see that! 

Another thing you would never see by just looking at this 31yo lady is that the depression can be real. If you suffered from all the things I mentioned above you would probably be depressed too. You probably wouldn’t know that there are days when getting out of bed feels pointless. And crying is the only thing that seems to help.  Anxiety is also real. You never know when you get out somewhere if one of these diseases will strike its ugly head. Then what happens? How do you excuse yourself to head for home? Will I make it home safely? Should I bother my working family to come get me? All things you have to worry about because you never know when you could get sick. 

Any invisible illness can take over your life. And not usually for the good. There are so many struggles. Loss of friendships and family members because they don’t understand. Or don’t take the time to learn. Loss of wages/job because of being sick. And anyone who says getting disability is Easy is so WRONG. It can take years for people with an “Invisble Illness” to get approved. Because just like you the judge can’t see if either. We look fine on the outside.  

If you take anything away from this please thing before you hurl thoughtless, mean words at people. Try to be less judgemental when you see a young person parked in the handicapped spot. He or she probably needs it or they wouldn’t have it. Also, try to be a good friend! And know that even though we may cancel 5 times before we can actually have dinner with you, doesn’t mean we don’t value your friendship. It just means that we are listening to our bodies. Lastly, remember what your Mama taught you. “If you don’t have anything nice to say, don’t bother saying anything at all!”

I hope this encourages others to share the things that no one can see outwardly due to their Invisible Illness. Let the world know what you go through. And others in the same boat know that they are not alone!!

-Amber