Interview With Author Bethany L Douglas of Helicopter Mom 

A good friend and colleague of mine has written her first book this year. An amazing book on learning to live with and letting go of fear. It is mostly geared toward mothers, however that being said I have read it twice and I gained so much from it as a single women. I feel like those of us with chronic illness live a life of perpetual fear and that is why when she origainally talked to me about reading it I agreed 100%. The more ways that I can find to deal with the fears I have in my life the better my life will be. 

 I recently set down with Bethany L. Douglas author of Helicopter Mom and talked with about her book and why she wrote it. After our discussion I put that discussion into writing so you could all read it. So down below I have included my interview with Bethany along with a link to a giveaway she is doing for a chance to win a copy of her book.   

                    Helicopter Mom 

Interview with the author Bethany L.         Douglas


—-What inspired you to write your book? 

Without being too spiritual about it, the short answer is the Holy Spirit inspired it. I talk some in the foreword about the inspiration for it which explains more, but truly this book came out of nowhere for me. I had not been thinking or planning on writing a book, and then one Sunday after a really great sermon by a guy named Jeff Voth, I came home and told my husband Gabe that I felt God had instructed me to write a book. I started that afternoon and it just poured out of my. I wrote it in long sessions while at work at my helicopter base, and the thing literally just wrote itself in about 6 days time over the course of a month.

I didn’t intend or expect to do anything with it. I was quite happy to just have it on paper. I left it that way for almost a year and didn’t think a thing about it. Then this last fall I felt compelled to try to get it published. I felt it was such a powerful and needed word from God for women and moms in particular that I needed to share it with the masses. And the rest is history!

 —-Why did you feel it was such an important message to share with women? 

Looking back on it now, I think God had been preparing my heart for quite a while for the subject matter. I had been a part of several moms groups for a while at that point and had been constantly surprised by how fearful the majority of them were. From the realistic to the crazy, never-gonna-happen stuff, fear seemed rampant in this population. Obviously so much so that society even has a term for it- helicopter moms. Fear drives so much of our lives when you really think about it, especially fear for our kids. I am not naturally a fearful sort of person, as I talk at length about in the beginning of the book, but it struck me how crippling it can be for others. Being an actual ‘helicopter mom’ seemed like a God-given dovetail from a really unique and fitting angle to help women overcome fear.

 —–Do you feel like women who aren’t mothers, or males (fathers) could relate to the book? 

You know, at first, I had no thoughts past just ministering to moms with this particular book, however I’ve had tremendous feedback from non-moms, single women, single father’s, even non-fathers about the book. The book speaks to everyone on some level. I think the key is that the book at its base is really just about overcoming fear. What people fear may be different and look different, but the fact is we all struggle with it to varying degrees. Even the men who’ve read it said that they gleaned a ton of great insight and practical applications to dealing with this giant in their lives. I had one guy tell me he needed to read it because he’s a ‘helicopter husband’! I think the basic Biblical principles will ring true with everyone, regardless of what specifically they fear about; and my ‘non-audience’ readers have all echoed this sentiment which thrills me.

 —-What made you decide to reference your medical training and job in the book? 

Most of that just seemed like the most obvious thing to do. The title for the book came to me immediately and I thought it was a totally different and unique perspective on just another ‘self-help’ book. I googled quite a bit about other books available that addressed such issues and there just aren’t any out there- either secular or Christian. I was really surprised since it seems to be so prevalent in our society. But, as I said before, the manuscript came very supernaturally and yet organically at the same time. I simply wrote what I do know about, the world of flight nursing and emergency medicine, and married that to the core issues that I perceived as being the root of this fear issue. The rest was just a Bible study of sorts to learn how to practically solve each issue. The helicopter background and information fell seamlessly (in my humble opinion) into visual and anecdotal stories that hopefully help the readers get a better grasp of what I’m writing about.

 —-If readers were to take away one thing from reading your book, what do you want that to be? 

More than anything I want this book to glorify God and show that He is the overcomer- and that as Christians we can share in that mantle. The Bible talks at length, from front to back, about not fearing- and yet we still do it. I want people to walk away with really practical, day-to-day steps on how to overcome this giant in their lives. For moms specifically I want them to ‘let go and let fly’ as I say in the book. Helicopters are actually the perfect visual to have as a mom… but we need to understand the purpose is not to hover but rather the amazing qualities that these aircraft have in flight. We can spiritually be the same way with our children and utilize this thing we call motherhood to better and more effective ends with our kids.

 —-What is your favorite memory during the writing, publishing and promoting process? 

By far my most cherished memory was the fact that I was pregnant with our third child at the time. She was flying around with me for the entire pregnancy and all of the writing of the book. I don’t want to give anything away, but as I talk about in the Afterword About the Afterward at the end of the book, she has made a honest mom and an honest author out of me. (You’ll have to read it to see why!) But I have loved the journey that God set me on for this whole, crazy thing. It has been refining for sure and I’ve met some tremendously amazing people along the way.

I love that during much of the writing, I would go back over it and have literally no memory of writing some of the things that were on the page. I still go back to this day and there are sections I read and I’m like, “That’s really good stuff! I should write that down!” Ha!

I don’t at all feel like this book is mine so much as a very special word from God; I just happened to be the typist and entrusted to get it out in book form to people. That in itself has been a sobering, heavy mantle at times to bear. But I am honored and humbled that He would choose me to proclaim the message.

—-What can we expect from you in the future? Are you working on another book? 

Whew, loaded question. I do feel like God is calling me to write and speak much more formally and full-time eventually. I have several ideas for books that I will get around to at some point. I’m working on an accompanying Helicopter Mom Workbook that can be used alongside the book right now. Hoping to get that out by the end of the year. I think my next book is supposed to be focused on helping women overcome guilt and our totally obsession with ‘giving things to God’ and then immediately picking them back up to worry and fret over. We have so much junk we needlessly carry around because we just refuse to put it down and walk away…. I’m thinking of calling it Junk in the Trunk… what do you think? Past that, I would like to start speaking and encouraging people more, as God opens doors. This ‘platform-building’ thing has been an interesting ride for sure… one that this mom still knows almost nothing about. But as long as I let God pilot this mission, I’ll be in good hands. You never know where this chopper may end up! I’m excited to be on the journey.

I loved being able to talk with Bethany after  reading the book and getting to talk to her kind of behind the scenes. Especially because I have known her for, oh boy I feel like I’m dating myself, at least 12 years and really always looked up to her as a person anyway.  I hope that each of you would give this book a chance. It is available to be purchased on  everyone go out and pick one up today! Available at and on Amazon at

And as soon as I can figure out how to get the link up I’ll get the link up for a chance to win a free copy of the book. 

  • -Amber

Just a Reminder 

Short but important post today. Just a reminder!!! This FRIDAY MAY 19 is PUT ON PURPLE day for lupus. So if you know or support someone with lupus and would like to wear some article of clothing or piece of jewelry that is purple this would be the day! The day to show, not only support for that person, but for the whole community worldwide! Leave a comment on this post if you plan to wear Purple for someone in your life fighting lupus! Let us know how you know the person you will be wearing purple for! Is it you? Your spouse? Your daughter? Or your best friend? I’m curious to see who people are supporting!  This would also be a good day to explain why you are wearing purple, to anyone who notices or asks, in an effort to spread information on the horrible diseases. Thanks in advance for the support. #putonpurple #putonpurpleforlupusawareness #putonpurpleforlupus #thelupielife #theworldseesnormal 

Where Did All The Money Go????Bills Pills Bills Pills…..

By Amy Nora
It is the never-ending cycle of what many of those with Lupus and other Chronic health conditions struggle with. The financial struggles that people with SLE face can be a challenge on many levels. According to the Lupus Foundation of America, the average lupus patient spends approximately $12,000 annually on treatments; however, many treatments cost several thousand dollars a month or every few months. There is also the problem of loss of income due to the inability to work full time or the need to go on disability. The average total annual breakdown cost per Lupus patient in the United States is $20K.  

This is an extraordinary amount of money to the average person or family. There are ways to help soften the financial impact though. First, drug manufacturers offer assistance programs for patients that are not on Medicare, Medicaid, or Tricare. If you are on any of those three programs, it is illegal for them to assist. These programs offer help with the medications that have copay’s of several hundred to several thousand dollar copays. Second, are organizations that have grants or funding available to assist with various costs associated with various conditions or drugs that are not associated with drug manufacturers so they do not fall into the prohibitive statues under the law. The most heard of and known one is the Healthwell Foundation to those in the Lupus community. Third, if you can meet with a financial advisor to work on medical expense planning. This is now just as important as retirement planning for those with chronic medical conditions. This is not Health Savings Accounts, this is not a specific type of account, this is a strategy based off expenses and potential length of ability to work.  

There are honest and hard financial discussions that must be had if you have a medium to severe case of SLE. I would encourage you to plan wisely. When those expenses come that none of us can plan for, let us make sure we use what resources we can to lessen the impact as much as possible.  

We already have to deal with pills, let’s do what we can about those bills…





Legalized Majiuana…. How it Helps the Chronically Ill….By Tammy Belaire Ford

This month is all about Lupus Awareness. And to me lupus affects everyone differently and everyone is going to use different things for treatment.  So throughout the month you will see posts written from different authors on how Lupus and other conditions affect them. As well as how they treat their conditions. I hope you enjoy their pieces. This is the first of this Pieces written by a long time spoonie!  She suffers with Lupus, Interstitial Cystitis, and Cyclic Vomiting Syndrome among other things. Here’s her story on how legalized marijuana helps the chronically ill! 

As promised to my pal Amber & since I proudly own the title of the tree hugging hippie Canadian who eats pot, I agreed to write what I know about the miracle wonder weed aka marijuana. I promise you , When I am done, your opinion of the weed smoking ” stoners” were nothing but idiots & uneducated will change! The amount of info they must learn is phd level.  Ok here I go – Have a seat, pot school is in session Ready? The fact that I use it now medicinally surprises me more than anyone. I was anti pot. I may have drank & been a tad loosy goosly once upon a time but NEVER DRUGS. I went to school, became a social worker who dabbled in drug & alcohol awareness, while working with low functioning developmentally delayed clients along side the Main Street bad guys ( that was a trip ) in a halfway house. All thorough out my career I suffered horribly with IC & cyclical Vomiting & what they thought was fibro ( it was not , it was Lupus). Career wise, I started out being a Private Investigator trying to catch the bad guy, to working in a halfway house trying to fix the bad guy, to working at Welfare & no longer caring about the bad guy. By the time I got to the last part of my career,  I was a sick puppy with an undercooked baby with a bad heart for a child. Not my finest hour. I got wigged out on Oxys & Lorazepam, lost my first spouse whom I loved dearly & had to leave my hard earned career permanently. The big pharmacy world was slowly destroying my life. I was asked by my pain doctor if I would be willing to try various strains & delivering systems using MJ. I had tried Nabalone, Marinol & Sativex – all prescription man made alternatives utilizing THC – the main ingredient in MJ. Personally the marinol did nothing, the sativex spray burnt the inside of my mouth & Nabalone helped with constant nausea but did nothing once an attack occurred. I use it as preventative agent now. Because I do not like taking anything I am not well versed in, after I was asked to try edibles infused with MJ , I cracked open the books. It’s important if folks are going to use it properly & get the most out of it to make sure they are well informed. 

First off – there are 3 types of MJ

Sativa-if you are prone to paranoia – don’t use straight sativa as it has invigorating, uplifting cerebral effects that go well if you have to be alert , witty & physical active at an endurance level 

Indica- sedating , perfect for going to bed or needing to relax & unwind . 

Hybrids tend to fall somewhere in the middle . Because they work so differently , a patient suffering from depression may use a sativa during the day & someone else treating pain or insomnia will choose an Indica strain at night 

High CBD strains are used for treating seizures, anxiety & pain just to name a few but have no psychoactive effects aka feelings or making one high.

The 2 main ingredients in MJ are CBD – cannabidiol & THC – tetrahydrocannabinol . Many strains of MJ arenknown for having an abundance of THC & not CBD. Case in point. A young girl in the US needed a high CBD cannibis to juice that would reduce & eventually eliminate her seizures. They, in fact named a high CBD strain ” Charlotte’s web” after the little one who desperately needed it. Her parents moved her to another state where it was easier to grow Charlotte’s web due to growing conditions & legalities. There home state wanted to put the parents in jail & take their baby away & put in foster care because some bureaucratic idiot decided they were endangering their child . Family packed up to new legal state, Charlotte took less that 1mm droplet of juiced high CBD levelled Indica 2-3 xs a day at first , now down to 1 dose a day & she is one beautiful young girl whose seizures are controlled by her use of cannibis. I think parents who are not willing to give their kids with seizures juiced MJ should be charged with child endangerment 

. The stigma is beyond ridiculous . 

Here are 5 differences between CBD & THC 

1. the high – while disappointing to the community wishing only to get high , the medical community is realizing CBD actually works wonders as a medicine 

2. THC is known to cause folks to be jittery , anxious & paranoid . CBD appears to have polar opposite effects., studies have proven that CBD works to counteract the anxiety caused by ingesting tHC . Also a number of studies state CBD can reduce anxiety when administered on its own – nature’s Valium. 

3. CBD in addition to being non psychoactive it appears to have antipsychotic properties & is being used for folks with schizophrenia & bipolar . For folks who are having a bad ” trip” making them anxious. Ingesting CBD MJ will calm the person down. 

4. Sleep- this is going to sound confusing but here I go / if you want to sleep & pronevto paranoid – don’t use a Sativa high in THC. However, if you want to fall into a sweet slumber and paranoia is not an issue – an Indica with both thc & CBD works well or just high THC. High CBD strains often keep folks awake & helps with pain. I like a hybrid of both CBD & THC in an indica as sativa makes me jumpy . Induction with CBD & thc helps with pain sleep & nausea . 

5. The last difference between the two will soon be a non issue in Canada when they legalized MJ across the country not just for medicinal use. The difference is there is CBD in hemp – hemp is a food, can be made into clothing etc & because it had no ” high ” effects , it’s classified differently & recently the FDA approved a form of CBD called Epidiolex that can be tested on children. 

There have been many jokes about cannibis use as well as lies & misconceptions that it is the gateway drug to hell. It is NOT!!! It is not physically addicting . People may believe they are chemically addicted or dependent on it but they are not. Anyone can stop without any worries of withdrawal . It does not take you by the hand and lead you to other big bad drugs. In fact they now use it to help with withdrawal from the hard crap out there. If people are going to do hard drugs …. they will despite whether or not they used cannibis first . 

If one is ingesting non heated CBD ( juiced cannibis) they can walk tightropes, fly planes & not be impaired at all. If one uses Indica high THC cannibis that has been heated / cooked at some point – stay off the streets , do not share it with your kids or pets, behave & go to sleep . 

I can’t smoke it. Somewhere along my almost 52 years of breathing , i did not learnt the fine tuned skill of breathing in with my mouth & out my nose without making myself hyperventilate . Add smoke to the mixture & I am just one hot mess. Unless I have been run over by the Benny Bus ( biologic Wonder med for Lupus that can make you feel like you have been run over by a bus or 2), I am having a ” making Linda Blair from The Exorcist look like an amateur in the barfing department ” aka a cyclical Vomiting attack , I don’t use it during the day. My dear pal who was a quadriplegic due to being shot when we were 18 used it through out the day to stop involuntary spasms . In her case & mine- using a Sativa with high THC levels would not work for our needs. We both used Indica with s combo of CBD & THC. When I juice MJ , I use    

The entire plant leaves, stems etc that contains both CBD & THC . Due to fact I am not heating it , the thc levels are irrelevant because they can only be released when heated. 

Because I turned a leaf ( pun not intended) in my views of MJ, I got off Oxys, will never use lorazepam again , reduced fentanyl patch from 200mg to 25-50g & I’m back to me again. Those other drugs rob folks of their souls & true identities : we have an awesome form of medicine right at our finger tips & the fact folks would rather take brain numbing & cell destroying pills baffles me. If I can change my views , anyone can once they have done the research. 

Enclosed are a few more reference pages to read if interested ✌️✌️✌️

A Little Infection For a Normal Person Goes a Long Way For a Spoonie

Last week as I went into the hospital for a hemiplegic migraine I felt like I was getting a respiratory infection. I mentioned it a couple times to a couple different doctors but no one really wanted to deal with it since I was in with a migraine. Well by the time I came come Saturday I really wasn’t feeling good. Sunday was worse and Monday even worse. So I called my dr and and she called me out a prescription. Each of the following days I just proceeded to feel worse, worsening shorteness of breath, increasing cough, and increasing temp. Thankfully I had a hospital follow up with my primary care physician on Thursday anyway. She walked in and said “Oh Amber you look horrible.”  I laughed and said “Well that could have something to do with the fact that I haven’t slept in two days bc I can’t quit coughing or because I hurt like crazy!”  She sent me to the lab to leave a sputum sample and to the radiology department for chest X-ray. By the time I got back up to her office she had decided she was going to admit me to the hospital.  She wanted me admitted for 1. Pneumonia 2. Adrenal insufficiency (because my blood pressure was running low) 3. Low potassium 4. And lupus exacerbation.    ( I haven’t been able to have my IV Benlysta treatment for lupus since February 16 because I’ve been sick. So my lupus is out of control. 

So I was admitted under this really great dr. He really seemed to understand my condition. For the first time ever a dr who understand lupus!!!!   He was good with giving me pain medicine and ordered breathing treatments, iv steroids and Iv antibiotics. He also placed me in neutropenic precautions. Not because my blood counts were low but because I’m very immunocompromised. So, everyone had to wash there hands before coming in or where gloves, the door had to stay closed, no fresh 🌺 or fresh fruit.  Sadly, my pain slowly grew more and more out of control as the evening passed and I had a really hard time asking. I hate asking for more pain meds. It’s a personal thing. And my mom thinks I’m crazy. But it’s just me. Anyway. As the night continued led to more and more years bc not only did my joints hurt but my ribs hurt like crazy from all the constant coughing!!! Finally about midnight I asked for some IV pain meds on top of the pills I was getting. The nurse called and I overheard her calling (two hours after I asked for the pain meds) and told her I was there for BRONCHITIS!! She failed to mention the lupus exacerbation. Anyway. She came back in and said the dr said that since I was in last week for migraines and had iv pain meds I couldn’t have anything on top of what I was getting excepts toradol and IBUPROFEN!!! I literally didn’t sleep all night and spent most of the night coughing and crying in pain!! I have never in all the times I’ve been in the hospital received such poor care. That nurse could have cared less. She told me three times she was calling for a breathing treatment and never did!  

The next morning (I had been up for three days by this point) when my dr came in he asked me first thing what was going on with my pain situation. He said in my chart in the same sentence the provided that was called about the pain medicine the night before stated that I requested and refused The IV pain medicine. So I have no idea what that nurse told her. So my dr gave me IV meds orders first thing that morning. He also informed me that I did not have pneumonia. I had tested positive for the  RHINO VIRUS and also had viral bronchitis. So he stopped my antibiotics as they would not be doing any good. The breathing treatments helped so much. And the iv pain meds helped. And I was actually able to just relax. I finally was able to take some naps. And slept a few hours over night on Friday night into Saturday. 

It’s amazing. The Rhino 🦏 Virus is technically the common cold virus. But for a spoonie it’s a nasty nasty bug. They said it could take me up to two weeks to really get over the bug. I’m home now, but I still feel horrid. No energy, short of breath, coughing constantly and doing breathing treatments and even running fevers. And I’m having trouble getting my insurance to cover my pain medicine scripts. But you gotta love insurance. I’m just so glad to be home and in my own bed.  But I swear if one more person says “It’s just a cold.”  OMG. Yes it may just be a cold. But when you have no immune system this “Cold” is brutal. I’m sure you can all relate to this!!! Anyway. Sorry for this rant. But I just wanted to share my story bc I know I’m not the only one who experiences things like this!!!


In March I was lucky enough to get to work with Sandrah owner of the ETSY shop Little Stuff 4U Pute Mineral Makeup & Natural Skin Care. She has a WIDE array of mineral makeup and natural skin care for amazing prices. As I was looking through her shop I have to admit I was a little skeptical. I was wondering just how good could her products be for those prices. Boy did she prove me WRONG!! Her products are downright AMAZING!!!  I actually had a hard time deciding what I should order. So I ordered a couple things and she added a couple of her other most popular things for me to try.  So I ended up with:

1. Aloe Vera Setting powder. Which is amazing. Makes your skin super super soft and sets your makeup really really well!!

2. Dragonfly Minersl Eye Shadow- This one really impressed me because of how pigmented it is. You don’t think it’s going to be that way. But let me tell you a little goes a LONG LONG way!!!! So the small bag she sent me is still going strong bc you just don’t need much for each use. 

3. Ultra Rich Face Cream. I can not say enough good things about this.  I think I have used every last ounce of product out of this container bc it is just so good.  It is so luxurious and makes your face feel so darn soft. Probably my favorite product in this bunch for sure.  

4. Vintage Rose mineral face color- also very pigmented. Great color for blush. Also works nicely for eye color.  Also goes a long way. 

5. Antique Ivory Liquid Cream- this stuff is fantastic!  This provides great overall coverage without making your face feel full or cackey. Was a very good match to my light complexion.  

All of these products were amazing. I really liked Each and every one of them.  It’s not often that I receive a group of products where I like  The whole group of products. So that shows just how great this product line is.  I highly recommend if you are looking for a natural skincare or mineral makeup line that you go check this Etsy shop out!!



About a month ago I worked with  Gabriella  and her awesome ETSY shop ForeverGreen Healing.  Everything she offers is just that Green. Totally natural. And that’s what attracted me to her shop.  She has everything from toner to boby butter to joint salve  and more. After spending time searching her site I decided what would benefit me most and I chose: The Flower Power Toner, Arthritis & Joint Salve, Sweet as Honey Face Mask, Magnolia Mint Whipped Butter, & Whipped Butter for Glowing Skin.  

I loved every single product except for the Sweet as Honey Face Mask. I am not sure that I didn’t just receive a bad batch. But mine was very hard and not pliable. I was unable to apply it to my face. I was sad about this. But all the other product WELL made up for it. I did however enjoy the Flower Power Toner. It worked well on my face and made my face feel nice. 

I think my favorite product of the bunch is the Magnolia Mint Whipped Butter. I have used it mostly on my feet mostly and it has made them soooo super smooth.  I have also found that when I have a cold it works a lot like Vic’s does when you apply it on your feet and out socks on.  This does the same thing. I don’t know how or why. But it seems to help!!  And I’ve had a lot of cheat congestion and coughs lately so I have used a lot of this!!! I will definetky be buying more of this.  

I also super enjoyed the other Whipped Body Butter. It goes on really smooth and leaves your skin feel really smooth for hours afterward. And the part that I like is that there is no strong smell. Being that I have severe migraines I can’t do strongly scented lotions. So I greatly appreciate lotions that are not strongly scented. This is also a product I will be buying more of. 

Ohhh I can’t say enough nice things about the Arthritis & Joint Salve.  Being that I have so much Joint pain I have love having this around. It has a smell slightly similar to an Icy HOT but not nearly as strong. And it feels good on the Joint.  But It doesn’t have the typical Icy HOT feel. Definetly something I can appreciate from the migraine standpoint and the pain front. 

Overall I give this shop ⭐️⭐️⭐️⭐️!!!  Gabrielle the owner is great to work and overall the shop is fabulous!  All the products were amazing and I can’t wait to use up what I got and purchase more in the future.  Please take time and go check out this shop!! You won’t be disappointed!!


Lupus Paychosis/ Neuropsychiatric Lupus 

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%).[3]. 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!!! 


Resources:ç l  

What Lupus Awareness Month Means to Me

Today starts 31 days of Lupus Awareness. And being that Lupus is my main condition I am going to be Writing a lot on Lupus, the chatectistics, the signs, what’s it’s like as a person to have the disease, the treatments etc…  This is an important month to me. Not only is it the month of my birth, but the month that focuses on the disease that has forever changed my life.  

Lupus was to me, like many, a foreign condition, when it was first brought up by my dr in 2012. Sure I had heard about it in nursing school but it wasn’t anything that had stuck with me, much like many other disease process we had leaned. But it quickly became very familiar. With every bit of research I did I realized that I really probably did have lupus, I really couldn’t deny the signs and symptoms. I had the red rash, the fatigue, the joint pain etc.  Even though I would have never in my wildest dreams put those symptoms together in Such a way to come up with lupus.  But what do you know that’s what it was and I’ve found a way to live with it and advocate for myself and others with lupus. 

So what does Lupus Awareness Month mean to me? It means brings Lupus to the forefront. Telling others what Lupus looks like, what Lupus sounds like, and how to be more aware of the disease.  I want to tell others what research is being done, what needs to be done and how we can raise money to get more research done.  The more awareness we can bring to the disease and research for the disease the better. The better research leads to better medication and treatments for all of us suffering.  So over the next thirty-one days be prepared to read a LOT on Lupus, the condition itself, the research and the treatment! If I am nothing else I am an advocate in my own right!!