Category: my journey

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

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.

How Many Times Have you Heard, “Just Lose Some Weight”?

If I had a nickel for every time I’ve heard over the course of my life that losing weight would help, I would be a rich rich women by this point in life. Yes, I know that getting to and staying at a healthy weight is important! So is eating the right foods and exercise. But in the long run will losing weight really fix or cure your health issues? Yes, I’m sure it probably will help some. But it’s not going to fix everything!! People like to throw that comment out for every issue. Oh you have headaches, lose some weight! Oh you have IBS, lose some weight! Oh you aren’t having any luck dating, lose some weight. Oh you’re having problems getting pregnant, lose some weight. I assume in the majority of cases people truly do not mean to be a Debby downer by telling others this. But they also probably have no idea how it feels to hear that from people you loved and respect, and expect some sensitivity from. If you’ve never struggled with your weight you have no idea how it feels for a friend or family member to direct those three words at you. “LOSE SOME WEIGHT!”

As a person who has struggled with my weight since High School I understand what a touchy topic this can be. I look back at my teen years and would give anything to be back at that weight now. But sadly that Amber was about 40lbs ago. But I didn’t just get fat due to poor choices and lack of proper food, just like many other chronically ill. Most of us probably took the DEVIL drug, aka Prednisone. Yes, prednisone fixes many many things. But it is also known to cause weight gain due to the cravings many deal with while taking the medication! And not like 3lbs weight gain. We are talking like 25, 50, 75 lbs. And it came on FAST. Your symptoms are mostly gone but now you got all the bonus weight. Sigh. The weight no one wants.

But it’s not just Prednisone that causes weight gain. Hormones often used for birth control can also cause weight gain, as well as Lyrica which is used to treat fibromyalgia! There are many many more that can cause weight gain. The point I’m trying to make here is that every over weight person you see did not just sit on the couch eating chips and watching Netflix all day! Even though that is what people automatically assumes, it is not always the case.

Did anyone think that maybe those of us who gained weight while on Prednisone might deal with a LOT of daily pain or extreme exhaustion!?!? Have you ever lived with so much widespread pain that literally every joint, bone and muscles hurt so bad that it’s torture even getting out of bed. Much less taking a walk or going to the gym. Does anyone consider the fact that many of us who are over weight can’t stand the way we look and can’t look at ourselves in the mirror. Many of us who have gained weight due to medical conditions or medications never asked for this. We didn’t just give up on ourselves and sit and eat chocolate all day. We got sick!!! And because of that many have taken medications that can cause rapid weight gain that doesn’t come off easily.

There are also those in the chronically ill community that gained weight because of the pain. They may have not felt like being the most active person. Every step, every tiny movement make your whole bodg ache. Then when someone throws out the “just lose some weight,” comment and you just wish they could live in your shoes for 24 hours so they know what’s it’s like. It’s honestly really hard to do anything at times, even low impact exercise can hurt! So what I am saying is when you already hurt in places you didn’t know could hurt the last thing you want to do is “hit the gym!”

If you really think you are giving offering up some groundbreaking piece of advice to work out and eat healthy. YOU ARE NOT! We’ve heard it from family and friends and even the doctors. I will admit the best I’ve ever felt was when I wasn’t walking in the morning before it got hot and ate a diet low on gluten. (gluten has been found to mess with inflammation in everyone.) It just wreaks havoc with the chronically ill. But let’s be honest eating healthy can be really expensive! And no that’s not a cop-out, but if you have ever tried to eat a gluten free diet, it’s hard at first and it’s expensive. And let’s be honest until you are ready to make a big change it isn’t going to happen. We are the only ones who can decide that we need to change the way we eat &/or our activity level. No one else can do it for us.

I guess the takeaway from my rant and rambling is that I wish people would work on their delivery. If you are kind and truly concerned about my wellbeing, I’m going to be more apt to listen to you. More than I will listen to the person who just tells me I’m fat and I need to lose weight. It’s not a surprise I know what I look like. I understand that research shows “When patients lose 5-29 percent of their body weight, the symptoms of chronic Conditions will improve!”Per the Cleveland Clinic. I know this but sometimes just getting your body moving and making that first move is the hardest part.

My Journey Is Not Yours to Share!

Every single one of us has our own story and our own journey. No two peoples journey will ever be the same. And we all feel differently about how and when we share our journey with new people. It can be a difficult decision as to when you decide to open up to new people about your chronic illness or condition. You don’t want to lead with it because the illness or condition does not totally define you, but it has helped to shape you into the person you have become. On the other hand if you wait to long the new people in your life may feel that you weren’t truthful or withheld information. However in the long run it’s our choice and our journey to share.

We all have friends or family who have a tendency to share our journey with new people as an introduction of sorts. They mean no harm and probably feel like they are making it easier on you by sharing your illness as an introduction. However, it is most often the complete opposite. It can be very uncomfortable or embarrassing to be introduced with your condition. I know for me I don’t want to be introduced to a person or group of people as my condition. The same way you would not want to be introduced by your religion or sexual orientation! Above all I am a person who has a condition. Not a condition that has a person.

In general I have NO problem telling people about my chronic illness journey. But it’s just that, MY JOURNEY! And at times it’s very personal to me and in most situations new people do not need to know about that journey right away. This may be the first and last time I meet someone and in that situation they don’t need to know I have a chronic illness. I want to be known first and foremost by my character. Not the girl who is sick, or dealing with a chronic condition. While my close friends and family may know both sides of me, people who I am meeting for the first time don’t need to know that part of me. I never want people to have preconceived thoughts about me based solely on my condition(s). Sadly, that’s often times what will happen if people are introduced to a condition before they really get to know me for me. It’s just human nature to associate a person who has an illness with people you have known in the past with that condition or stigmas around that condition.

When something someone else is doing is making you uncomfortable how do you bring up the topic without in turn making them feel uncomfortable or embarrassed? For many any kind of confrontation isn’t easy but there are some situations where a discussion is necessary. I for one hate any kind of confrontation and will do everything I can to avoid it. That being said your friends and family can never know how you are feeling unless you let them know. And most of the time in this kind of situation they would never think that sharing your journey might be uncomfortable for you. Simply because they’ve never been in your shoes. They don’t know what it’s like to live with a condition that impacts all areas of your life. In my experience, others need to share my journey is coming from a good place. They want me to feel comfortable and open in any situation. Without realizing that they are in fact doing the exact opposite.

When it comes to having a conversation about emotions and feelings I’ve found that honesty is the best policy. You just need to have an open conversation about how sharing your illness or journey makes you feel. I would definitely suggest making sure that how you deliver the message in a way that can’t be misconstrued! You want to make sure that you don’t make them feel badly about their actions. Simply because in most cases they are not purposefully doing anything to make you feel uncomfortable. When you’re dealing with a chronic illness or condition you learn how to bring the topic of your illness up and when to share your journey. And until you’ve lived in the place where this is an issue you can never truly understand. So when talking to your friends and family try to use an example to explain how it makes you feel. Like maybe explain to them that from now on every time you introduce them to someone you are going to say “Hi, this is Linda she is a bookkeeper and has five kids and is divorced!” While those are an important part of who Linda is, she doesn’t want to be known as the divorced bookkeeper with 5 kids. She wants to be introduced as Linda! And over time she can choose when to open up and share the details of that journey. Yes, I know it’s not quite the same but hopefully using an example like this will help them to see and understand how uncomfortable it is to have their story shared before they are ready.

If you are not chronically ill or dealing with a difficult journey, but have a close friend or family member is I hope this makes you think. You always want to think about how you would feel if you were in their shoes. If it was you dealing with a chronic condition how you feel about them sharing personal information with new people. Would you want to be introduced as Sam who has anxiety? NO! That is most likely not the first thing you want people to know about you. You, like us, would not want a new friend to have a preconceived view of you just based on what they might know or not know about said condition. Basically before you share details of a person’s life and journey you should always think about how you would feel if it was your story being shared for you.

There are so many labels out there in today’s society that we don’t need to add more. It seems as though people are no longer known just by their name. There is always a label or something descriptive attached. There’s Amber the blonde. Or there is Sam who has the triplet girls, or Bob who is gay. While those who place those labels were probably not trying to be judgmental or negative they are inadvertently causing others to judge them before they know the real person. In many cases they were most likely just trying to distinguish you from the other “Tim’s” they know. Ten years ago I never dreamed of being Amber, who has lupus and a mile long lost of other conditions. And I don’t want those conditions to define me. While they have become a giant part of who I am they don’t define me. At my core I am still the same person I’ve always been. I just happen to have a list of chronic conditions that impact me on a daily basis. In most cases people are doing what they think is right in the situation and are not acting to purposely make you feel embarrassed or uncomfortable. They want others to understand me, and to understand why I might do or say the things I do! They don’t realize that by sharing your journey they are labeling you. The only way to prevent this is to have an open and honest conversation. So if you feel uncomfortable or embarrassed by the way others introduce you tell them! They can never know how you are feeling until you take the time to explain your feelings to them! As I always say you have to advocate and stand up for yourself and your feelings because no one else will ever do it for you!

With Love,

Amber