Why is it that today women (and men) feel that it is okay to sit behind a screen and a keyboard and saw awful things to people online? When did it become socially acceptable to put down another female simply based on her appearance? When did it become acceptable to say nasty things about another woman’s character, when you’ve never met her? And why did it become okay for each of us to put stock into what others say about us?!Read More
Co-Written by myself & contributor Amy Nora When you have a chronic illness like Lupus there are going to be some thing's that you hold true. Things that you don't share with most people, things that you know most people don't want to know, or simply wouldn't understand. Things that you feel people who aren't sick would never understand. So as we have come to an end of the 2018 Lupus Awareness Month, I want to share some confessions from the chronically ill. Remember they might not be true for all chronically ill. This is based of the experiences/issues we have and deal with.
1. I often feel guilty --- Some of you are probably wondering why we would feel guilty. Well, there are a MILLION different reasons. We may feel guilty that we can't contribute to our families like we want to. Or we might feel guilty because we feel like we are a burden to our family and friends. Or because of the constants needs or help for basic daily life we need to ask of others. There are a million reasons why we might feel guilty.
2. I feel like I'm alone --- Again you may be wondering how we could feel alone when we have friends and family all around us. Well, that's simple, we may have people around us but they don't know the struggles we face everyday. So it's not so much that we may feel alone physically, it's more mentally and emotionally. Because most family and friends don't know what it's like to live our lives, and they can never truly understand our world. We try and protect them from what we go through, because as much as what we deal with, we also know that they feel a stress. This can intensify a lonliness. It creates a vicious cycle.
3. I often experience some level of anxiety and depression --- There are so many reasons we may feel this way. We could be anxious because we aren't feeling well and there's nothing we can do about. Or because there is something coming up that we aren't sure we have the energy or stamina for. On the other hand we could be depressed because we had to cancel ANOTHER date with a friend or our spouse. We might also be down because we feel terrible and have for awhile. That takes a toll on your mental health. The very nature of having a chronic illness creates a constant mental battle that is medically known to alter brain chemistry.
4. I am almost always in pain --- Even though you know I have pain medicine and have taken it. I am generally always hurting somewhere. NO, it's not searing, burning level 10 pain. It's more like a constant nagging annoying pain. Like a level 3 Pain. But it's usually constant. And chances are I won't say a word, and will often say "I'm fine" when asked. Just remember, your fine and my fine are not the same. Sometime ask, “No, how are you really doing today? I want to know. What can I do that would help you?” When in pain and tired, these words are a balm physically and mentally.
5. Every good day is truly a gift ---Sadly, we don't always have a LOT of GOOD days. So when I do I may need help remembering that this day is a gift and I should take full advantage of it. Do not make me feel guilty for having a good day, do not take my joy for this good day. I may have to pay for this good day for a week to come or a few days in bed or on the couch with pain, fatigue, or any combo of problems including infections.
6. I don't look sick --- Nine Times out of ten you wouldn't know by looking at us that we are sick. That our bodies are constantly at war with itself. We just look like average people on the outside, but inside we may be a disaster. Going out in public knowing that others can't see our illness can lead to feeling alone, or being anxious.
7. I am often afraid to work, make plans or have a life --- I know this one sounds silly. Why would anyone be afraid of those things? It's simply because we never know what our body is going to do. I may feel fine at 8am, but at 11am I may feel like I was hit by a bus. Our bodies change so quickly and often without reason. So we never know if we make a dinner plan for next Wednesday how we will feel. Every plan is made with the caveat of, “If I feel okay,” and buying tickets for an event is a terrifying exercise in wasting money and letting friends down.
8. Not all doctors understand --- Sadly, this is the case a lot of the time. I don't know how many times I've seen a doctor who's not my own and they know nothing about Lupus or how it impacts a person's life, body & health. The American Medical Association even acknowledges that auto-immune diseases are one of the most under taught areas in medical school because of their complexity. More times then not, as the patient you are educating the provider when you are already ill. At best, they believe you and do some additional research quickly to understand. At the worst, they do not listen and make medical decisions that do not help you are your condition because they do not understand fully how Lupus impacts you. Remember, Lupus effects each patient differently.This is just a few confessions of the chronically ill. I could probably write a book on things we feel but never share. We don't want pity so we often keep our issues to ourselves. We don't want to be judged or looked down upon because of our health. What we do want is for people to understand. Just this week, Toni Braxton tweeted a picture of herself, and people were quick to make a judgement that she had plastic surgery. No, she is on steroids for her Lupus. Know Lupus. Know that we deal with our body attacking us on a daily basis, and that no two cases are the same. Know that we keep our secrets to protect you, but know those come at a cost. So today…. We let a few cats out of the bag.
Amber & Amy
We will hear that taking care of ourselves can be overindulgent or that you are entitled to it in our society. Tune out what society says, and as someone with a Chronic Illness here are the facts. You must utilize self-care. This means that you cannot run yourself ragged emotionally or physically. You need to invest in emotional and physical health. There are days that you must rest, this will prevent you from getting sick. There are times that you will need to cancel plans; yes this is frustrating, but it is unfortunately our reality. But, there are things that we can do to help invest into our emotional and physical health with give us strength to fight our chronic illnesses. Emotional health can involve going out with friends, getting away to that quiet place in your home that you love with your favorite beverage, and watching HULU, Netflix, or reading a book. (I personally prefer a book, but to each his own. 😊) Go to the movies, take a walk in the park or around your neighborhood, go pet a neighbors cow, or look at the birds that are flying overhead. Make sure that whatever you do brings a smile to your face, heart, and soul. It is proven that when sick laughter causes the production of serotonin; find something to laugh about! Watch a movie, or find that TV series that makes you laugh. Spend time with your pet, the joy they bring to you is great for your heart and sould.
Your Physical health does not mean that you need to run a marathon. It can be something as simple as 5 minutes three times a day of some sort of easy exercise, or if you can handle it more. Yoga, Tai Chi, Walking, Pilates, these are all low impact exercise options that help build strength and help with mobility. Aquatic therapy is excellent for those with joint issues. Check with your local community centers and churches, synagogues, or temples to see if they have classes if you are not sure where to start.
Another aspect of your physical health is eating healthy. Make sure that you are getting 3-5 servings of fruits and vegetables a day. Try and eat a healthy balanced diet. Yet, when you feel awful or are down it is easy to hit that quart of chocolate ice cream (I brought up chocolate ice cream because I went through the 12 step program and I still have problems. Apparently, they frown on ice cream for 3 meals a day.) in frustration. Between prednisone and many of the medications that we take for our diseases, weight gain is easy. While eating healthy won’t prevent it necessarily it does make you feel better. If you want help with dietary suggestions, check with your local hospital which normally will offer a community class or go to WebMD.com
Remember that while you cannot control everything in life, you can choose to enhance what aspects of your life you can. Decide today to do what you can to help make a difference. Even a series of small baby steps over times makes a huge difference.
In Lupie Love,
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.
Depression has many faces, and can look many different ways! It's not always the person that we picture in our minds, or saw on TV. Someone who is so down that they can't get out of bed or complete their daily tasks. It can look like your best friend who is working and going to school full time and has become very good at hiding her secrets. This year through a mutual friend I was lucky enough to be introduced to Kayla. I'm really just getting to know her. That being said since the first time we interacted she has always been very open about her battle with depression. Since she is so open and willing to share I asked if she would be willing to tell her story here! Thankfully she agreed. Below is Kayla Aiken's story, her story of how depression impacts her life.
When I woke up today, I found myself on the couch barely able to open my eyes. I reached for my phone to see what time it was. 10:07 AM. At this point, I had slept 23 hours since the morning before, and I went back to sleep an additional four hours before waking up to even eat something. This is a very minimal depiction of what depression looks like. My doctor calls it “leaden paralysis”, a symptom of Major Depressive Disorder, Atypical in subtype. It’s where your entire body feels like lead. Your arms are so heavy it feels as though you can’t lift them. Your legs are leaden and making it up stairs is a struggle. This is mental illness. My diagnoses include the previously mentioned MDD, severe, recurrent, and atypical, PTSD, Generalized Anxiety Disorder, and an Eating Disorder.
My story starts here: I graduated nursing school in May of 2010. After four years of nursing in the same location, I decided to become a travel nurse. I traveled in Oklahoma, Connecticut, and Missouri. I was in Connecticut in 2015 and started to feel sort of “blues-ish”. I thought it was just because of the weather. So, I came home to Missouri in March and by the Fall of 2015 I was a worried, depressed, and anxious mess. I couldn’t take my dog outside without my gun on my side or maise in my hand. I packed food and put it in the trunk for my drives back and forth to work just in case we got hit with a nuclear bomb or an EMP…etc. My hands would shake uncontrollably at times and I couldn’t eat anything. I went on a cruise in October of 2015, but I didn’t even enjoy it to it’s fullest because I was so concerned that the ship was going to sink or we were going to get stranded on some island we visited. My anxiety was out of control.
In January of 2016, I saw my doctor for the anxiety. He asked me if I was depressed, also, but I denied it being an issue. But, it was. It was a major issue. I called in a couple of weeks and said, “Oh, I think I am struggling with depression, too, so if I could get something for that…” He prescribed Prozac, but it put me to sleep for a week; so, we made the switch to Effexor. Between the medication for anxiety and the Effexor, I started to feel a little more normal again around the March/April months of 2016.
By the fall of 2016, I started to feel as though the Effexor was no longer working. I was driving back and forth to work envisioning myself driving off the road into a ravine, or seeing myself take my gun in my hand and put it to my head or my heart, or taking all the pills in my medicine cabinet. I was so mentally ill. So, so ill. I was losing friendships, my family relationships were strained, and I was calling off work more frequently than I could afford. I was faking fine so well, that only my closest friend really recognized how mentally ill I was.
I think it was in November of 2016 that we found out my Dad had been having an affair. And then my extended family and I had a big blowout over Christmas 2016. Two major stressors in a short amount of time.
In January of 2017, I went back to my physician and brought my best friend along to help me stay honest. I told him, very fearfully, that I was having suicidal ideations and that my depression was out of hand. He changed my medications up a little bit, and sent me on my way. The medications did not work. In February, I found out that my two younger sisters had been sexually assaulted by an older boy cousin. It infuriated me. It destroyed me. And, I had no idea what I could do about it; because my sisters are adults now and will deal with it the way that they want to. But, if it was up to me, I would have him and everyone else who was involved put on trial for such a heinous crime.
March of 2017 rolled around and I flew to San Diego for a conference, still so very sick, and losing hope by the minute. I was driving home from St. Louis from the conference, and tears rolled down my face until my eyes were nearly swollen shut and physically ached. What was I going to do? I couldn’t live like this.
A few weeks later, on April 3rd, I delivered my 14th baby during my midwife clinical. I drove home later, took a shower, and curled my hair. I was going to dress and do my makeup despite feeling so depressed. I went to a 12-step meeting, and when I got in my car I just had this feeling of “I cannot do this”. I called a friend, and she was cooking dinner, so I let her go. I went home, I played piano, I journaled, I watched TV, and nothing was working.
So, the evening of April 3rd, 2017, I took approximately 140mg of Ambien. My standard dose was 5mg nightly. I won’t go into the events of that evening, because it is just a lot. But, I woke up the next day in the local ER to find out I was going to be admitted to the hospital psychiatric unit for a week. It was one of the hardest weeks of my life.
In 2017, I was admitted to hospital psychiatric units four separate times. I spent 3 months in a residential facility in Chicago getting treatment for my depression and other mental illness diagnoses. I met a ton of wonderful people there. People who were also ill, but wanted to get help so much that they stopped their lives to go into a long term inpatient facility to work on their shit. It was liberating, and oh so hard. But, I’m thankful I had the opportunity to do it.
So, where am I now? Still in treatment. Still working on my shit every day. Still focused on getting up out of bed and making myself do things like laundry and dishes and putting gas in my car and getting groceries so I can eat. It’s not easy. Every day is hard. But, every day is a gift. I am trying to see that for the truth that it is.
I feel like all of the above was probably very boring to read, so if you made it this far, thank you! I’d like to take a moment in closing to talk about mental health stigma. I looked like I had it all together. I had recently graduated with my Bachelors in Nursing. I was pursuing my Masters in Midwifery from a prestigious university. I was working full time. I was going to church, maintaining friendships, and seeing my niece and nephew as often as possible. But, inside I was being eaten alive by my demons. Many people who struggle with mental illness do not look like they do. Still to this day, when people find out I struggle with depression, they are shocked. “But you are so personable and bubbly.” they say. I would encourage you to get in deep with those that you are surrounded with on a daily basis. Your family, peers, and coworkers…etc. Ask them how they REALLY are. Ask them about anxiety or depression and whether they have ever struggled with it. Be honest about your own struggle with anxiety and depression with someone who is safe in your life. Find someone safe for yourself, and be someone safe for others. When I attempted suicide in April and July of 2017, it was my closest best friends who intervened and saved my life.
Thank you for reading, and if my story resonates with you and you’d like to reach out, I’ll leave my contact info below. Feel free to reach out if needed.
If you are having suicidal feelings or thinking of ways you could end your life, PLEASE reach out to someone you can trust! There is help out there for you!!!
As always with Love,
Invisble illness, invisible disability....... To those who don’t have one, most would assume that it’s in your head. Thus invisible. However, this so far from the truth An Invisible Ilness is an illness that cannot be seen outwardly. So for instance; Migraines, Lupus, Rheumatoid Arthritis, Kidney Disease, thyroid disease, Heart disease, arthritis, fibromyalgia, Chronic Fatigue Syndrome, or Chronic Pain. This list goes on forever!! Invisible illnesses could even include mental illnesses. You can’t and most of the time will never see mental illness outwardly. They are conditions that can not be seen by just looking at someone. They are conditions that may be wreaking havoc on a person internally but you would never know because they may or may not be showing any signs outwardly. The Invisble Disabilities Association has deemed October 15, 2017 - October 21,2017 to be Invisoble Disabilitoes Week Online. A week to celebrate if you will, or bring conditions like these to the forefront. So let’s do just that. When you see someone in their thirties get out of a car they just parked in a handicap spot. What’s your first thought? For most I would almost guarantee it’s not “Oh how sad, I wonder what condition has made them disabled!” For most it is probably more along the lines of “Look at that fat lazy girl taking up a handicap spot. I bet that tag belongs to her grandma or somethings!” Now, don’t get me wrong not everyone thinks that way. But I know a large amount of people do. I have even caught myself at times thinking things I shouldn’t. Sadly in this day in age it just seems like second nature. People don’t automatically assume that their may be a reason that a 32 year old slightly overweight female has some big bad illness because on the outside other than maybe a limp or the look of exhaustion on her face you don’t see anything wrong.
According To Everyday Health, “But for the millions of people who are living with arthritis, fibromyalgia, chronic fatigue syndrome, and other forms of pain that are "invisible illnesses," explaining what's wrong is another side effect of their condition. Not only do you have to put up with challenging, often painful, and sometimes debilitating conditions every day, but on top of that, you may have to face skepticism from people — friends, family, and co-workers, as well as strangers — who don't understand what's wrong with you.”
So what do you do to get past the skepticism and the non-believers? Do you put up bumper stickers with a list or your conditions? Or wear a T-shirt that says something along the lines of “Yes, I’m really sick? No! Because you can’t change the way people think. All we can do is pass on awareness to our friends and family. And even the people who follow us on social media. The only way we will ever get past the way people who view those of us with invisible illness is awareness.
Awareness can come in many forms. For me Blog. I can get my information out to larger volumes of people by blogging. I also use My social media accounts as platforms to spread awareness. Do people get tired of it? I’m sure! But we have to spread awareness for the Invisiblem Illnessea that are touching our families and friends. Should we shove it down peoples throats? Absolutely not, people aren’t going to change! Some people will always think we are just lazy. And you know what we have to be okay with that bc we can’t change anyone else.
So help me help us this week by spreading awareness of Invisible Illness. One way we can do so this week is to change the frame on our face book profile picture to one that says I live with an Invisible Illness for the week. That just might open some eyes for people around you!! The Huff Post posted this graphic and it feels like the perfect way to end this blog. But should you have any questions or anything please reach out!
Go out and spread awareness of your Invisible Illness/Disability!
Lupus psychosis or Neuropsychiatric Lupus sounds pretty scary right? Well it is. It may also sound pretty far fetched.... That it is not!!!!It is a truly scary condition that someone with lupus can deal with, but others who don't have lupus might have trouble understanding. So what exactly IS LUPUS PSYCHOSIS??? Or Neuropsychiatric Lupus? The American College of Rheumatology (ACR) has identified "19 different ways that lupus can affect nervous system, including the brain. This complication of lupus is known as neuropsychiatric lupus, or NPSLE. Compiled research suggests that as many as 90 percent of adults, adolescents, and children with lupus will at some time experience the devastating effects of NPSLE" According to MedicineNet "Systemic lupus erythematosus can cause inflammation of virtually any tissue of the body. ... When lupus affects the brain, it can lead to headache, seizure, stroke, or psychosis. Psychosis is a serious mental disorder featuring defective thought processes, frequently with delusions or hallucinations." See scary stuff. But we never hear of it!? Is it really that common? No. I've never heard of it, it must just be a couple people here and there? Well..... that's actually not the case. According to National Institute of Health, Neuropsychiatric manifestations are present in two-thirds of the patients with SLE.[system lupus erythematosus]. The most common neuropsychiatric manifestations in SLE are cognitive deficit (49.33%), lupus headache (23.11%; in 57.69% of these patients, tension-type), psychoses (12.00%), seizures (10.67%), and cerebrovascular events (9.78%).. So there you have it. Lupus psychosis is seen in about 12% of those with neuropsychiatric manifestations! Who knew.
Now that we know that this happens way more frequently than we thought let's look at the symptoms of Lupus Psychosis//Neuropsychiatric Lupus(NPSLE). The most common side effects or problems people who live with with Neuropsychiatric Systemic Lupus Erythematosus is cognitive dysfunction. This simply means that they have a hard time concentrating or they have a hard time with reason or problem solving or recalling memories. These symptoms may not seem problematic to the average joe but to a person suffering with them they can disrupt all aspects of life. I can personally tell you. They can affect your work, your ability (or lack thereof) to organize, ability to learn new things, ability to Process visual-spatial things, and language issues. For kids and adolescents the effects of NPSLE is usually on school work.
The most common complication of NPSLE is cognitive dysfunction, meaning difficulty concentrating or reasoning and problems with memory and recall. These symptoms can disrupt all aspects of life, including the ability to plan, work, organize, and learn, visual-spatial processing, and language. For children and adolescents especially, this effect of NPSLE on school performance is a major concern. To make SLE harder for kids and adolescents to deal with because NPSLE occurs often. Usually early in the course of the disease process and in children usually happens with great severity. However, other symptoms can be life-threatening. These including seizure and strokes. These can be major causes of illness and be major causes of changed quality of life or even brain damage and death. At this point there is no point that can gauge if Lupus is affecting your Nervous system. However, we do know that NPSLE can be present even if a persons SLE is inactive in their other organs. Sadly, even though there are medications to treat symptoms of SLE with nervous system involvement, but not ALL PEOPLE with NPSLE will respond to those current medication. And the side effects of these meds can be quite undesirable. We have now looked at the frequency and the symptoms of this condition but I was curious as I'm sure you are as well , if there is a cause. So I did a little more research. And I really I didn't find much that I hadn't already found. According to the National Institute of Health "Psychiatric symptoms in SLE can be functionally independent psychiatric disorders. It can be due to drugs (steroids) used for SLE or secondary to SLE because of its brain involvement, which is termed as neuropsychiatric systemic lupus erythematosus (NPSLE)."
I talked with a couple of people who have suffered with Lupus Psychosis and this is what they told me: Melissa said " I have dealt with lupus psychosis a few times. Both times I ended up being admitted and tested for every illegal drug under the sun because they couldn't figure out what was wrong with me. It was scary I couldn't feed myself, work a phone, or even the tv remote. I couldn't even recognize my family. Then I was having these crazy physcadelic dreams. And I would cry to my parents that the nurses were making me clean hallways of the entire hospital with bleach on my hands and knees. It is definitely a scary ordeal and something I hope to never experience again."
Susan's experience is a little different. She said "I get brain fog often. Sometimes when people are talking I don't understand what they're saying, even though they're speaking English. Then there's the persistent searching for words and forgetting things. It's especially embarrassing when I'm teaching and I know what I want to say but the word won't come out."
Living with a condition with Lupus Psychosis or NPSLE is a difficult one. And it truly Becomes a family affair. Because it affects the persons children, parents, siblings etc. Anyone's life who lives with the person is going to be affecte any at times devestaved by NPSLE. There is so little understanding of Lupus Psychosis and NPSLE that there needs to be an expansion in clinical and research development urgently!!!