Hi My name is Luke, I am making this GoFundMe for my Wife, Lauren. She has Narcolepsy and is a Nurse at the hospital. I guess now she is a covid nurse although that was never the plan. She was not given a choice in that unfortunately.
TV and movies have really given the general public a misunderstanding of what Narcolepsy is. Did you know it is a spectrum just like a lot of things with the human body! It can come in many different forms! The version you may see portrayed on popular television shows and other media of people randomly falling over at comedically timed moments on sitcoms is mostly untrue. That falling over suddenly is known as cataplexy and it is typically only associated with severe narcolepsy and it too comes in degrees. Lauren is fortunate, I guess you could say, To not have cataplexy so long as she is properly medicated. However while the medication helps that falling over, or sudden loss of muscle control which is what actually happens by the ways, there is another trait that all narcoleptics share. They do not get restful sleep no matter how much they sleep. That is really the core issue. Science is not exactly sure why. Medical science does not yet know much about narcolepsy. They seem to think it may be some form of autoimmune disorder. That rings true. I do not need to give you her whole private medical history but my wife suffers from a number of other auto-immune related conditions. I personally think it is all connected. The truth is like so many disabilities we do not fully understand the science yet Lauren has to live with the condition every single day.
I really do not want to attempt to go too far into what the known science is. While I have read into it deeply being the loving husband and in some ways caretaker, hmm maybe partner is more accurate of a narcoleptic nurse.The truth is I may not explain it completely right but to my understanding the issue is that my wife without several medications cannot get restful sleep even if she slept 24 hours a day. She goes into R.E.M Sleep for the entire sleep session and does not spend enough time in the critical other stages of sleep. Again I am not a doctor so I will provide some resources to learn more about narcolepsy with this !
Can you imagine not being able to feel rested no matter how much you sleep??
I saw it first hand in lauren. She does suffer from depression and various other health issues as a result. Who wouldn't? Yes she is medicated and that helps a LOT!
“Helps” is a strong word. It makes it livable, and it is not good for her overall health either!
She has to take several medications one of which she takes every single night and has for the last couple years. She has to maintain a very strict sleep schedule, setting an alarm for 4 hours into the night to take a second dose of her nightly medication. Which is a disgusting liquid salt that is highly regulated and available from one pharmacy in the world. It is the most successful medication for narcolepsy according to lauren but she takes several, nightly and every morning as well. I only mention this salty one because in the long term the salt will damage her body. I will not speak to medical science but this the standard recommended trade off medically to be able to function in our society as a narcoleptic.
Even with medication it is such a struggle! She is tired constantly and she never feels rested. Never has energy! Yet she went to college and earned a bachelor's degree in nursing and went to work serving the community.
Her grandmother unfortunately passed away when she was younger and the long story kept a bit shorter. She decided her passion and goal in life was to become a hospice nurse so that is what she did!
After graduation she became a hospice case manager. Helping people find comfort in the last weeks of their lives at home. She did this for a while but her narcolepsy caught up to her. You see, being a Hospice RN Case manager is a demanding job and it has on-call requirements…people do not die on a rigid schedule.
So many nights a week she had to remain on call for 24 hours at a time meaning she was not able to take her nightly narcolepsy medication because it would make it impossible for her to drive to her patients homes at 3am to be with them while they pass on. She made it work for a few months but eventually the narcolepsy took that dream from her. It just became unsafe. It is not good to just skip your medication a few days a week first of all, it is not good for a narcoleptic to stay up for 24 hours because a person takes 48s to actually pass away but yet there would be lauren by their side.
She had to stop, it was not safe for her to drive to and from these places exhausted. So she did. She resigned and took a job at our local hospital caring for elderly patients. She just loves old people. She thinks they are cute!
Working in a hospital is not exactly her dream, and honestly the american hospital system is really messed up so she has to care for people the best she can with the limited resources she has available and it breaks her heart because she does not have enough! Nurses did not before the pandemic but certainly they do not now!.
More than that she does not have the same resources within her own body as a “normal healthy person” She is tired all the time on her best day.
The job at the hospital is not exactly what her dream is but hey it is a way to help old people and that is what she has always wanted to do. I think the most fulfilling thing for her is that she gets to be an advocate for these people to get on hospice when it is the right time. So many people are not educated about how beautiful hospice is before they pass.
Well she does not get much time to do that anymore. With the pandemic and the greed of “non-profit” corporate hospitals she works for running rampant there is not nearly enough staff. There never was but especially not the last couple years.
She does not have even enough staff - I.E. - time to do the basics, which if you didn’t know is giving medications, changing diapers, moving patients to prevent bedsores, education and about a million other tasks. She does not get to take a break. She does not get to eat lunch. She doesn't even get to take the time to step away and pee. She does not get good protection in terms of PPE. She does not get hazard pay. She works for about 14 hours non-stop every time. On her feet with 8 patients.
All that being said she has done her service for years before the pandemic and now for 2 years during the pandemic. It has been so so rough on her the entire time
I mentioned the greed of the corporate “non-profit” Health System that runs her hospital? Yea they also are their own insurance company and guess what! They decided to not pay for one of my wifes essential narcolepsy medications! It is basically a ADHD medication but it is the only approved best practice medication for narcolepsy in the world. It is recommended by her neurologist and yet the insurance company has refused to pay for it! So for YEARS now we have paid over $300 every single month to buy this medication. I want to point out that I have ADHD! And I was on her insurance once upon a time! Funny enough? It paid for me to get the very saem expensive medication they refused to pay for lauren! The insurance company decided the medication was worth paying for if you have ADHD but if you have narcolepsy you are rejected!
She is a nurse for this very same company? How does this make sense is not a liability? IF we did not purchase this medication out of pocket then one of their very own nurses could fall asleep on the job. They do not care.
For no extra pay, Lauren is being forced to become a covid nurse.
She has done all of this so far because she really just wants to help people but she does have a disability and being a full time covid nurse is not possible. It is a different kind of nursing. She has given so much already. She does not have the energy or the ability to physically do what a full time covid nurse does. Also her body is not healthy and it cannot handle that high of viral load. She cannot make this change.
I do not know what else to do. I am just desperate to be able to tell her….”Lauren you have given enough to that place, you do not have to go back”
She does not know I am making this Gofundme but I do not know what else to do to help her. I set this up for an unrealistic number but if we had that I know she would be comfortable quitting her job and then she can volunteer as a Hospice nurse for the rest of our hopefully happy life. Our family appreciates any help you can provide!