bendixso

Looking For Male Volunteers

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Hello,

I am in the process of writing a book about living with N. I have already interviewed five people and am looking for more volunteers to help me finish the eBook. If you want me to send you a sample of a section I have written, I am more than happy to help.

This has been an illuminating project for me. I have changed as a person by writing it.

Here is my email address if you have any questions:

ted@tedshred.net

And my phone number (Don't hesitate to call and chat, I am interested in your story)

303-506-9200

I want to thank everyone who has already participated. We are making narcolepsy education a reality!

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HI! I hope everything is going well for you! it sounds like an interesting book. I was wondering if you would mind sharing some things with the rest of us though? to be a bit more on the personal side?

  • Do you have narcolepsy? If so When was your Diagnosis, and how old were you at the time?
  • Are you a doctor or researcher? are you a Journalist or student? Are you writing this on behalf of a company as an assignment or for your own personal goals?
  • You seem to elude to working for or with someone.... Are you employed to do this work?
  • Where will the proceeds from this book go? Personal? Medical and research? Narcolepsy Network or some other Organization?
Sorry to be so nosy, I was just curious about all these things...... :D

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HI! I hope everything is going well for you! it sounds like an interesting book. I was wondering if you would mind sharing some things with the rest of us though? to be a bit more on the personal side?

  • Do you have narcolepsy? If so When was your Diagnosis, and how old were you at the time?
  • Are you a doctor or researcher? are you a Journalist or student? Are you writing this on behalf of a company as an assignment or for your own personal goals?
  • You seem to elude to working for or with someone.... Are you employed to do this work?
  • Where will the proceeds from this book go? Personal? Medical and research? Narcolepsy Network or some other Organization?
Sorry to be so nosy, I was just curious about all these things...... :D

this guys name is ted. i sent him an email because i felt the same way. let me get his response and i'll post.

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From: "ted@tedshred.net" <ted@tedshred.net>

To: xxxxxxxxxxxxxxxxxxxxxxx (my other email address)

Sent: Saturday, June 13, 2009 10:26:10 AM

Subject: Narcolepsy Ebook

The person I writing the eBook for has a family member who was diagnosed with N. She says she faults herself for not understanding at first, so now she has begun commissioning work for narcolepsy understanding. That is where I step into the picture.

She isn't with a company yet. That was a misunderstanding on my part. That said, I am very excited about the project she is embarking on. I believe she is also planning on doing a series of eBooks about several different conditions in an attempt to increase public understanding.

I apparently didn't keep my original email that i sent to him. i asked about the australian company he mentions, but HEY! That's not here... was that in one of his entries in the shoutbox? There was something else, too...

I'm not a big fan of "that was a misunderstanding on my part" even though he did type the info about Australian company...

ooooooooooo - it was another thread perhaps? MikeM posted a reply, which is not on this thread... maybe go there and reread.

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Hello,

I am in the process of writing a book about living with N. I have already interviewed five people and am looking for more volunteers to help me finish the eBook. If you want me to send you a sample of a section I have written, I am more than happy to help.

This has been an illuminating project for me. I have changed as a person by writing it.

Here is my email address if you have any questions:

ted@tedshred.net

And my phone number (Don't hesitate to call and chat, I am interested in your story)

303-506-9200

I want to thank everyone who has already participated. We are making narcolepsy education a reality!

hey, Ted,

thanks again for ur email reply. Would u mind sharing how u have changed as a person? I would love to have an "outsider's" p.o.v. if u don't mind. I bet that other's on this site would like to know, also.

Have u gone thru some of the posts on here? Maybe do a search for male user's and then go to their profile page to find their posts. You could then contact whomever catches ur attn.

In the other thread, you or MikeM state that you can't wait for this book to get out there. I'm curious if ur going to charge for this eBook (along lines of some of Marcianna's questions), and if so, could at least one copyright be donated to Narcolepsy Network with library/ rental company priveledges? That way, everyone here can read it for no charge. Kind of sad if not considering that the ebook is being written for those that need to learn about it, not for those that have it. Maybe it could at least be posted under it's on topic category - hint hint to you and to the moderators here and to Narcolepsy Network.

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hey, Ted,

thanks again for ur email reply. Would u mind sharing how u have changed as a person? I would love to have an "outsider's" p.o.v. if u don't mind. I bet that other's on this site would like to know, also.

Have u gone thru some of the posts on here? Maybe do a search for male user's and then go to their profile page to find their posts. You could then contact whomever catches ur attn.

In the other thread, you or MikeM state that you can't wait for this book to get out there. I'm curious if ur going to charge for this eBook (along lines of some of Marcianna's questions), and if so, could at least one copyright be donated to Narcolepsy Network with library/ rental company priveledges? That way, everyone here can read it for no charge. Kind of sad if not considering that the ebook is being written for those that need to learn about it, not for those that have it. Maybe it could at least be posted under it's on topic category - hint hint to you and to the moderators here and to Narcolepsy Network.

Hey again. I really need to set this thing up so it sends me email whenever I get a reply. To answer your first question, I have changed insofar as it takes me longer to judge a person's character. From so many of the stories I have read, I find a prevailing lack of understanding from others that becomes the major frustration in PWN's lives. People automatically assume that you do what you do because of your personality, and they believe it is your fault. I have learned that so much of our lives is unknown to others. We can only judge those closest to us, the ones we know the most.

To answer some of Marcianna's questions. First, I do not have narcolepsy. I am a 25 year old college graduate with a philosophy degree who works as a freelance writer. My client is a woman in Australia who is writing this eBook for education purposes only. She has a relative who was recently diagnosed, and she noticed an apalling lack of literature on the subject, so she comissioned me through a freelance website known as "RentAcoder.com". It's basically a place for freelancers to bid on projects they want to do.

I will have to get back to you on whether she plans on charging people to read the eBook. If she did, it would be a nominal fee, especially considering the actual length of the eBook (40 pages). Not too many people would be willing to pay more than a few dollars for that. Basically, the eBook is more like an extended pamphlet, if you will.

Much of the writing done for the internet is for the purposes of what is known as "search engine optimization," which in effect is the creation of content that will attract searchers to a website. She may be doing this, and she may not. Either way, it doesn't matter because any website with copious amounts of good and useful content is likely to be the one at the top of the search engine rankings. As an aside, one of my other projects is a survival guide website that will both advertise products and services and provide information that may save someone's life. Whoever said doing good work couldn't be profitable?

So yes, I am doing the project for pay. But if you consider what I am actually making, it is a very small amount for the effort I am putting in. I probably make something just slightly above minimum wage. I also think most people she could have hired to do the project would have been okay with writing people's stories without confirming with the PWN that they are accurate. I have sent a copy to every PWN whose story I have written. Head over to DailyStrength.org and ask about me.

Other than that, I live in Oregon in the summers and Colorado in the winters. I love to snowboard! I have a website for me and my friends who plan on shredding until we are dead.

http://www.shredbots.com

Doing projects like this allows me to fund the habit while doing something intellectually and morally fulfilling.

...And yes. I am the guy in the picture on the website, kissing the gold chain. But remember, I have learned not to judge from first impressions alone. You shouldn't either.

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Hey all! I thought I would also add two cents on my interactions with Ted. He has been extremely professional in our interactions. As many folks here know, I am extremely open with my narcolepsy and my story (at times to the dismay of some poor posters who have gotten 500 word responses to 10 word questions). Beyond finding the project and Ted's efforts extremely worthwhile, I also thoroughly enjoyed writing my responses to Ted's questions and reading his reworking of my story. Both experiences were extremely cathartic for me. I think I find new insights and connections every time I reflect on my medical experiences and my journey with narcolepsy. I would also openly state that depending on what Ted's client decides about the eBook, I am more than willing to contact her and to negotiate with her for a way to make this piece more broadly available. I hope that helps folks too!

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Hey again. I really need to set this thing up so it sends me email whenever I get a reply. To answer your first question, I have changed insofar as it takes me longer to judge a person's character. From so many of the stories I have read, I find a prevailing lack of understanding from others that becomes the major frustration in PWN's lives. People automatically assume that you do what you do because of your personality, and they believe it is your fault. I have learned that so much of our lives is unknown to others. We can only judge those closest to us, the ones we know the most.

To answer some of Marcianna's questions. First, I do not have narcolepsy. I am a 25 year old college graduate with a philosophy degree who works as a freelance writer. My client is a woman in Australia who is writing this eBook for education purposes only. She has a relative who was recently diagnosed, and she noticed an apalling lack of literature on the subject, so she comissioned me through a freelance website known as "RentAcoder.com". It's basically a place for freelancers to bid on projects they want to do.

I will have to get back to you on whether she plans on charging people to read the eBook. If she did, it would be a nominal fee, especially considering the actual length of the eBook (40 pages). Not too many people would be willing to pay more than a few dollars for that. Basically, the eBook is more like an extended pamphlet, if you will.

Much of the writing done for the internet is for the purposes of what is known as "search engine optimization," which in effect is the creation of content that will attract searchers to a website. She may be doing this, and she may not. Either way, it doesn't matter because any website with copious amounts of good and useful content is likely to be the one at the top of the search engine rankings. As an aside, one of my other projects is a survival guide website that will both advertise products and services and provide information that may save someone's life. Whoever said doing good work couldn't be profitable?

So yes, I am doing the project for pay. But if you consider what I am actually making, it is a very small amount for the effort I am putting in. I probably make something just slightly above minimum wage. I also think most people she could have hired to do the project would have been okay with writing people's stories without confirming with the PWN that they are accurate. I have sent a copy to every PWN whose story I have written. Head over to DailyStrength.org and ask about me.

Other than that, I live in Oregon in the summers and Colorado in the winters. I love to snowboard! I have a website for me and my friends who plan on shredding until we are dead.

http://www.shredbots.com

Doing projects like this allows me to fund the habit while doing something intellectually and morally fulfilling.

...And yes. I am the guy in the picture on the website, kissing the gold chain. But remember, I have learned not to judge from first impressions alone. You shouldn't either.

Hi,

Can I just ask whereabouts in Australia your client is? I'm in Melbourne and there's a good support group here (www.nodss.org.au and a national conference happening in October this year). I haven't been able to find organised groups in the other states, though. Nor have I been able to find many doctors who understand N, but that seems to be a fairly universal situation. The one I have now is fabulous....the cost to see him is relative. :P

Sunrise

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Ted, I think what ur client is doing is awesome. I think that ur coming to this site is awesome. Narcolepsy is a disease that is the butt of many jokes, and because of that, Marcianna and I wanted to check what was going on. You obviously are putting forth a great effort to provide others with info that is much needed. THANK YOU.

Thanks also for sharing how u have changed. It's seems to have had a profound affect on you, and that in turn has had one on me. Please let me know if there is anything that I can do to help you.

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Doing projects like this allows me to fund the habit while doing something intellectually and morally fulfilling.

...And yes. I am the guy in the picture on the website, kissing the gold chain. But remember, I have learned not to judge from first impressions alone. You shouldn't either.

Thank you for taking the time to get the real stories from the people who live with N. Too bad you don't need any stories from the ladies... sounds like a lot of us here would have loved to help out.

Nice picture too :P

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As someone newly diagnosed, this project sounds like a great idea. Anything that helps friends/family to understand is definitely appreciated. I'm not a guy, but let me know if there's anything I can help with.

Do you have different age groups represented? How long have the people you have interviewed been coping/dx'd with N?

(Sorry for any weird wording/spellingleft, I've edited several times but it's 5am and I'm having one of *those* nights.)

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Do you have different age groups represented? How long have the people you have interviewed been coping/dx'd with N?

Actually, that's a good point. It appears most people here have been fairly recently diagnosed. I was diagnosed almost ten years ago and I had NO idea until I found the group on FB that there was any sort of assistance or support available. I lived in denial for a long time, because I didn't want to be 'different' from everyone else. Eh, I'm still in denial some days. B)

For that reason, I think this place is awesome, especially for the newly diagnosed....because there's more information and understanding here than most of us have had in medical offices (or from families and friends, for that matter).

Hmmm...the evil side of me thinks we should all get the email addresses of those medicos who dismissed us and send them the link once the ebook is done. For educational purposes.

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Actually, that's a good point. It appears most people here have been fairly recently diagnosed. I was diagnosed almost ten years ago and I had NO idea until I found the group on FB that there was any sort of assistance or support available. I lived in denial for a long time, because I didn't want to be 'different' from everyone else. Eh, I'm still in denial some days. B)

For that reason, I think this place is awesome, especially for the newly diagnosed....because there's more information and understanding here than most of us have had in medical offices (or from families and friends, for that matter).

Hmmm...the evil side of me thinks we should all get the email addresses of those medicos who dismissed us and send them the link once the ebook is done. For educational purposes.

Alright. I have spoken with my client some more, and she has told me that she will be charging enough to cover the making and marketing of the eBook and nothing more. Her hope is that it will be so widespread that almost everybody who thinks they have narcolepsy will see it. I hope this is the case as well. Hopefully, at some point, it will be made free because all of the costs will have been covered. If you are a contributor, you will get the eBook for free. I think this is a great way to say thanks for all of your effort.

Answering some more of your questions. I have a small range of ages covered here. Most people I have interviewed are older than 40. One is in her mid-twenties. As of yet, I haven't interviewed anybody who hasn't been diagnosed with N, and this doesn't worry me. The fact of the matter is that I need to be speaking to potential PWN's with the voice of experience. The eBook is meant to guide their decision making in dealing with something that is very difficult to handle.

It is unfortunate that some doctors have their heads so high in the clouds that they lose all empathy and bedside manner. My friends in the biological sciences always joke about the pre-med students not really caring so much about biology as they care about the status that comes with being a doctor. They are the students more likely to suck up to their professor to get an A than they are likely to have a real passion for biological science. Some of them just won't be persuaded by anybody. I think you know the experience.

Right now, the eBook isn't going to get finished unless I have more male volunteers. If any of you know of anyone or know anyone who knows a man with narcolepsy who is willing to interview, please let me know. This is crucial. I am two interviews away from completing the project. Thanks for your help.

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Did you consider becoming a member of the NN?

The Narcolepsy Network probably wouldn't mind a small donation, knowing you want to create a product that relies on what we go through day to day.

Posting in every category possible when you first enter a forum would not have been my choice of an introduction. There's a saying about catching more flies with honey than vinegar that comes to mind.

We get exploited in the media in really lame ways. You might consider getting a good, hard look at what our symptoms are.

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What I meant about the range/how long they've been dealing and coping with N is that I think the interviewee's experiences will vary greatly depending on these factors. As a 24 year old woman, my contact with doctors, friends and family and the issues I deal with are very different than a 40 year man. Coping with social pressure to go out at night partying or needing to pull all-nighters, or access disability services for school require a different skill-set and different community support than someone with children or who is struggling to remain financially independent or pay a mortgage. The beginnings and endings of relationships or marriages have a big impact and they too often depend on age. Having people coming from more varied backgrounds, at a bunch of key stages for a PWN might give you a better rounded sample. The voice of experience you're searching for might also be the voice of shared experience. No one can relate to a situation quite like someone who has JUST gone through it. Many things change in a 20 year gap, especially neurological understanding.

Also, people seem to be getting diagnosed earlier and earlier these days so depending on whom your target audience is you might have several issues. If you are targeting pre- or newly-diagnosed PWN (which I'm gathering from "almost everybody who thinks they have narcolepsy"), you may also have better success with getting a higher proportion of younger people involved.

I doubt you have any control over this as the author but youor your client might want to consider that the ebook's cost could be a deterrent there as well. I believe finances can be a stretch for many of us and I personally have learned that buying anything about N is a tricky and often frustratingly disappointing thing. I don't put out money for things like that before I have an idea about what I'm going to find. Last week I read a horrible article (it was from the 60's but I didn't know that when I started reading) which analysed N from a psychodynamic viewpoint and Freud says we're all perverts. If I had paid for it, I'd be mightily pissed.

I'm pretty sure someone else brought this up (I can't remember which of you lovelies read my mind) but you should think about donating a free rentable/downloadable/whatever copy for NN as a contributor. After all, you are using NN as a source of potential interviewees and support. Not to mention that NN is a trusted voice for many PWNs. The exposure alone could be worth it.

Oh. Stu's right about the honey thing. You catch more flies with honey. Coming to a board which has a high percentage of women (especially considering the percentage of those who have been posting recently) and posting everywhere looking for men probably won't get you the flood of results you're looking for. If you could find anyway for us ladies to help that would be different. Even something little like having a small collection of one-line quotes gathered from people of any gender that could involve us. I'm not whining, just explaining. For interviews, someone earlier suggested reading posts and emailing guys directly. The only people I know with N (besides myself) are those that post on here.

Sorry about the novel. I tend to swing between "dead to the world" and "going off on every tangent possible". Anyway, good luck with the ebook.

[Total SIDENOTE here, but does anyone know if it's feasible for a PWN to go white water rafting? I really wanna go, but I'm hesitating. I've checked with several companies but they don't know what N is and so can't help...]

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I have a couple of FB friends who are male with N and don't post here. I'll point them to your message on the FB group.

(Also agree with the points made above. I also think the more stories the better, considering how varied all our symptoms [and medications!] are.)

I can't recall if it's been mentioned previously, but it might be an idea to have a couple of PWN read the full version pre-publishing (not just their own stories) to get a quick gauge whether the completed product is hitting its intended mark/getting the correct message across, or not.

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I am glad see so many of our members willing to participate.

Ted's work is extremely important it seems and I cant wait to see it when it gets out.

I agree with Stu and would love to see you become a member of our Network. I am not sure when your Deadline is... but we do have a conference coming up in October perhaps it may be a good way for you to meet people with N and have face to face interviews with them. Also a good way for you to get the latest up to date info from Stanford and other good medical facilities working hard to help us out. I hope you are able to make it!

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I am excited to see the buzz that folks have around the work that Ted is doing. In my own correspondence with Ted, I asked if he could put me in contact with his client when the eBook is finished. I would guess that it might be a tad awkward for him to make requests of the person paying him to put this together. Ted assured me that he will do that. I plan to contact his client to see what might be possible in conjunction with NN. I truly believe that the cost of this eBook will be reasonable. I also have no qualms about purchasing a few "copies" so others in our community can have access to it, and Ted's client can still cover her costs.

I also think that Ted's work can be a tremendous spring board for similar projects. The fact of the matter is that even two 40 year old men likely have extremely different experiences with narcolepsy. For instance I know enough of Stu's story to know that his journey has been radically different than mine. What is beautiful to me is that we are going to get a chance to read the stories of other PWNs. Ted's book is geared towards possible PWNs. Other efforts could be more about supporting fellow PWNs. It would be tremendous to have a chance to know many other stories because while we might all be different in our symptoms and our meds, the underlying frustrations and anxieties are indelibly the same.

I write with some regularity on my own blog about my narcolepsy. At first, I was stunned to realize that there are only a handful of us doing that. But my own months of a meager 3 posts often remind me that keeping up with anything is nearly impossible when one has narcolepsy. Thus, I think it is fantastic that a non-PWN hired a non-PWN writer to capture some stories. It will be interesting to see what else we can make happen as things move forward. I also hope that a few other men will contact Ted. I am anxious to see the final product. I need to get through this week, but I hope to contact a few fellows that I know who are PWNs. I am also more than willing to assist any male PWN who is worried about his "writing skills." I would certainly make time to help craft responses to Ted's questions.

Cheers!

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I have a couple of FB friends who are male with N and don't post here. I'll point them to your message on the FB group.

(Also agree with the points made above. I also think the more stories the better, considering how varied all our symptoms [and medications!] are.)

I can't recall if it's been mentioned previously, but it might be an idea to have a couple of PWN read the full version pre-publishing (not just their own stories) to get a quick gauge whether the completed product is hitting its intended mark/getting the correct message across, or not.

That is a great idea. I am going to run it by my client. She has a deadline that I have to meet, so it might interfere with that. I both love and loathe deadlines. You're more productive, but you're also quite stressed. That said, I think she would like the idea of having it combed over by several PWN's. I would do it if I were her.

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Hi,

Can I just ask whereabouts in Australia your client is? I'm in Melbourne and there's a good support group here (www.nodss.org.au and a national conference happening in October this year). I haven't been able to find organised groups in the other states, though. Nor have I been able to find many doctors who understand N, but that seems to be a fairly universal situation. The one I have now is fabulous....the cost to see him is relative. :P

Sunrise

My client says,

"I live in a town called Wagga Wagga - it is in the State of New South Wales - it is a 6 hour drive south-west from Sydney - has a population of 56,000."

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That is a great idea. I am going to run it by my client. She has a deadline that I have to meet, so it might interfere with that. I both love and loathe deadlines. You're more productive, but you're also quite stressed. That said, I think she would like the idea of having it combed over by several PWN's. I would do it if I were her.

It is a good idea.. good thinking Sunrisemoon.

We are all usually very careful because so often we are misrepresented in the media. Im sure It would be much more effective also if it was approved by someone with N. My new Doctor (who is awesome by the way) would be an excellent source for that sort of thing. Not only is he a great doc, he also has Narcolepsy. So best of both worlds in one. PM me if you are interested. I will get his contact info to you. =)

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Considering PWN have such completely different stories, this book might be a wonderful teaching tool for doctors. Too many sleep doctors don't get it. Maybe if they took the time to read a collection of stories they could better diagnose N. The textbook N is not what we each have... we each have our own variety.

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[Total SIDENOTE here, but does anyone know if it's feasible for a PWN to go white water rafting? I really wanna go, but I'm hesitating. I've checked with several companies but they don't know what N is and so can't help...]

eww, did you go? if not, just don't laugh and look over the edges. don't scream too much and lean over the edges, either.

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Considering PWN have such completely different stories, this book might be a wonderful teaching tool for doctors. Too many sleep doctors don't get it. Maybe if they took the time to read a collection of stories they could better diagnose N. The textbook N is not what we each have... we each have our own variety.

It's a nice thought, but the problem with sleep doctors is that the overwhelming majority might be better coined as "sleep apnea doctors." They don't bother with narcolepsy or other sleep disorders that are far more complicated and time-consuming in their diagnosis/treatment. They don't want the potential liability of prescribing and monitoring controlled substances.

You know, I thought that too. I went into sleep thinking that I could rid the world of naive sleep doctors, helping potential PWNs get properly diagnosed and receive better treatment. But I was wrong. They don't really care. If it isn't OSA, they won't blink an eye at you. I once stood up for a RBD patient that [the doctors I work for] wanted to write off as OSA and unintentionally put my job in jeopardy (because I'm supposed to be/act subordinate to them--doctors have egos). As it turned out, I was right; the guy was pre-Parkinson's. They sent him off to some neurologist...wouldn't even put the poor guy (who was beating up his wife in his sleep) on clonazepam. This is the unfortunate reality of so called "sleep doctors."

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It's a nice thought, but the problem with sleep doctors is that the overwhelming majority might be better coined as "sleep apnea doctors." They don't bother with narcolepsy or other sleep disorders that are far more complicated and time-consuming in their diagnosis/treatment. They don't want the potential liability of prescribing and monitoring controlled substances.

AMEN!

They don't really care. If it isn't OSA, they won't blink an eye at you. I once stood up for a RBD patient that [the doctors I work for] wanted to write off as OSA and unintentionally put my job in jeopardy (because I'm supposed to be/act subordinate to them--doctors have egos). As it turned out, I was right; the guy was pre-Parkinson's. They sent him off to some neurologist...wouldn't even put the poor guy (who was beating up his wife in his sleep) on clonazepam. This is the unfortunate reality of so called "sleep doctors."

Andrea, while I am glad that you shared this story (and SUPER proud of you for advocating for the patient), it frightens me to know end that my some of my greatest fears come to pass. I worry all of the time that many of the "sleep doctors" are only interested in OSA. Now, OSA is a HUGE problem, and I am thrilled that folks with it ARE getting treated. It is far more life-threatening than narcolepsy, but it is crazy that so many of us struggle to find even a decent sleep doctor who will even handle the basics of our cases. In fact, my faith in my own doctor hit an all time low last week when he did not even come in to talk to me because things seemed to be "fine." It is wonderful that you are a sleep tech who is watching out for folks that might get overlooked otherwise.

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