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Newly Diagnosed And Unsure About Nursing School


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#1 tjunderw

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Posted 09 September 2012 - 07:29 PM

Hi all! I am new to this forum and relatively new to narcolepsy as well, being diagnosed just under 5 months ago. A little background: I was diagnosed April 2012, right before my 23 birthday. I had experienced extreme fatigue for years but no one took me too seriously through college assuming I just didn't sleep and exercise enough. When I graduated in 2011 with my B.S. in Speech Pathology (took a few school transfers but only 4 years!) I worked in an office where I could fall asleep standing up filing papers. A sinus infection brought me to the doctor where I discovered my hypothyroid, still no one thought being sleepy was a problem. Once I started a new position doing speech therapy as an SLPA this January I found it impossible to stay awake, nodding off while talking to patients, during work meetings where I'd hallucinate, and unfortunately while driving my 1.5 hour each way commute. That led me back to the doctor, then my sleep test where I fell asleep in all of my naps in under 5 minutes with REM in each one. And now here I am, finally with an answer! I found a neurologist that has been amazing after my first neuro did not have the experience I felt I needed. I've alternated between nuvigil and adderall but currently back on nuvigil which has been the best option, minus the headaches. So....now to my current feat.

I took my GRE and applied to graduate school to get my masters in speech pathology right in the middle of my lowest health and subsequently did not do too well. I applied because I felt I needed to do something with my life and SLPA jobs are far and few between, and I can't do much else with my major. I have always wanted to help others and love learning so I have been looking at second-degree bachelor of nursing programs. I have spoken with faculty at a program I am interested in but have reservations about how a student with narcolepsy will be perceived, and how other medical professionals will percieve an RN with this type of disorder. Thankfully I don't experience severe cataplexy, but I am nervous about the likelihood I'll be treated just as capable to do my job as other nurses. My best friend is a nurse and she seems to think it won't matter, but I just want to feel like I can do anything I put my mind to even though I may deal with a little more in my day than the average person.

I know this is a little long and rambly...but I would love to hear from other nurses or medical professionals- I know I've read there are a few here! How do you deal with your diagnosis and your job? Is there a stigma you face or do you feel accomodated? It bothers me to feel like a complainer about my symptoms because most people have no idea what it's like to have narcolepsy and it worries me to have to explain myself to people who might think I am not qualified to do this type of work. I would love any thoughts, advice, information that anyone has! Thanks : )

#2 exanimo

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Posted 10 September 2012 - 02:51 AM

Hi! Welcome to the NN Community!

I am a current student, also recently diagnosed (May 2012) and I am hoping to apply for Nursing school within the next year. It is definitely daunting - although the schooling makes me more nervous than actually being an RN with Narcolepsy. Mostly because there is such a diversity within the field of nursing. You can work in a hospital, or in homes, or assisted living homes, nursing homes, behavioral health treatment centers, etc. There are so many options! Though I think that your location would be a consideration, as it would depend on which of these places are in your area. But the point is that there are so many different positions, with varying hours and shifts, big or small companies, or even private care employers who hire Nurses. I am sure that some of them would be a little wary of the Narcolepsy diagnosis, but I'm also sure that there are more open-minded employers as well.

The second factor, which I'm relatively unfamiliar with, is the Disabilities Act. Which from what I've heard, does include Narcolepsy. Basically it can protect you as an employee, because of your disability, Narcolepsy. It enables you to receive reasonable accommodations. This has, from what I've heard, also been a setback for some, though.

But I believe that if you've come this far, with a Bachelors in four years (congratulations!) that you would be fine! Just be sure to keep up to date with information regarding your rights as an employee with a disability, and monitoring your medication and what your limitations are. But as long as you stay on top of your Narcolepsy, and recognize that while it can be difficult at times, it is not something that defines you. Even though I know from experience that at times it does appear that way.

Anyway. I wish you the best of luck!

#3 tdmom

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Posted 10 September 2012 - 08:13 AM

Hi,
I am on these boards not as a PWN but as the mother of a PWN. I am an RN however with 28 years of experience.
Being a nurse with Narcolepsy wouldn't bother me, you would bring a different perspective to your career then someone else. Different perspectives should be encouraged and welcome.
A lot of your success would depend on your ultimate choice of employment. I work in an ICU and as long as you can do your work I could care less what you have. We help those who need help, a patient may all of a sudden need more care and we willingly pick up and help the person/RN who needs it. However if my employer did not make specific plans for your needs and expected others to continually pick up when you need to nap in addition to their work, that might be a different story. But then my anger would be directed at my employer not you.
An analogy - we had a nurse out several times with a back injury. She was returned to work but couldn't do any lifting above 15 pounds. Which meant the rest of us could not ask her for help with our patients, and always had to pick the heavier patients. After some time this did cause resentment among her peers, but it was directed mopre at administration who thought it ok to put all of us in this situation.
There are lots of different places for RN's. I am sure you can be successful and I would encourage you to continue with this endeavor.

#4 KMitchell25

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Posted 11 September 2012 - 03:58 PM

Hello!

Great that you made it through for your Bachelors with N! I'm back in school and taking it slow, but I'm hoping to go for nursing too.

My sleep doctor said that we need jobs that keep us on our toes- up and moving- and that the worst job to have is a desk job when you are on a computer all day.

Guess what type of job I have now? Yup, that's right, a desk job that is ALL computer work with little interaction with people except for over the phone. I'm looking for other positions but also furthering my education so that I can obtain secure employment without falling asleep at my desk constantly.

FMLA is something you should apply for- it protects your job if you are having a bad day and can't make it to work or need to leave work due to N. Unfortunately I have not been at my job for quite 12 months (got laid off from my last job due to lack of work in October 2011) and you have to work for 12 months to qualify. SO for the next two months my coworkers and my boss are hopefully going to be understanding of my situation- because I get so lethargic I'm just terrible at staying on track, I also fall asleep and forget what I was doing- so that does not help anything!

Any job where you are on your feet and working with people face to face to get more stimulation is a good bet- and it sounds like you would be a great RN!!! Good luck!!

-Kristen

#5 tjunderw

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Posted 11 September 2012 - 07:55 PM

Thank you all so much for your thoughts! It feels great to actually read positive comments about N rather than the "can't do's" you normally see. N on its own is a lot to deal with on a daily basis without having to worry about choosing a career, if you can even hold down a job, getting through school, or fully participating in family and friend relationships. I am so proud to have gotten through school and to even have the energy to think about another degree, and what keeps me moving is the fact that when I didn't have a diagnosis there was no reason to let myself fail.

My only worry is that I will be the only one pushing, and it's exhausting just thinking about how exhausting an accelerated nursing program will be. This forum is great and even when you aren't directly asking anything it really feels like a friendly conversation where you can vent just through reading other's experiences. My family and friends are supportive of me but sometimes I feel like I try to express what narcolepsy is like and I just get the "uh huh...yup" head nods, which is not always encouraging and leaves you alone in your daydreams-mood lightening pun intended. I want to be Taylor the RN who assisted the cochlear implant surgery who happens to have N, not that girl with narcolepsy who happens to be a nurse. With my speech pathology background I would love to work in an ENT, otolaryngology or pediatric area and I can't help but feel drawn to heal other people and become too busy to dwell on my own issues. This is definitely the path I want to take, and I appreciate the comments everyone left. A little encouragement goes along way! KMitchell25 and exanimo, keep pushing toward nursing! With a solid schedule, treatment that works for you, and a few deep breaths (and maybe a nap) I think we can all achieve what we're hoping to!!

#6 lilmomm

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Posted 11 September 2012 - 09:16 PM

I was actually Dx while I was in nursing school. I have been tired and have taken a lot of naps for years and I kept blanking out during lecture and falling asleep while trying to read my books. I didn't realize I was actually sleeping when I blank out until the doctor told me this. I don't really think that nursing school is too bad with N but I always make sure to take a recorder just in case I miss something. Every program and every school is different but my particular school is very supportive of any types of issues that any student may have. My instructor told the whole class that if we needed to take a power nap at any time then we could just get in one of the lab beds and rest because they are aware how important self-care is and how much stress is put on nursing students.

In my particular program the instructors try really hard to be interactive and none of the will lecture for over a 50 minute period without a break. They are also sending us out to look for various things and trying to stress us out to prepare us so it is actually a little hard to fall asleep. Most of the students in my program are so stressed they are on something to calm them down, with the exception of me of course! I am not really worried about when I become a nurse because that is a job that you can always find something to do to occupy your time and most of the time you barely have enough time to get most stuff done, especially in a hospital. I also don't plan on telling anyone unless someone notices odd behavior and asks about it.

#7 bluesbrother20

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Posted 19 September 2012 - 01:45 PM

I wish I was diagnosed in school or before I started grad school for OT. You are absolutely right every program and every school is different I give credit to your college. I had the exact opposite experience and I would get reprimanded for not paying attention. It should be my responsibility to make up notes and my loss if I am not paying attention. As long as I am not disruptive it shouldn't make a difference. I have always struggled my whole life feeling fatigue and having EDS and no matter how much you sleep and you never feel refreshed and then at night you feel the complete opposite your more awake, you have energy but now you can't sleep and have insomnia plus you have obstructive sleep apnea and cpap doesn't make you feel any better and now its two-fold not only are you suffering from EDS but your sleep deprived as well. I was only diagnosed two weeks ago with a chronic illness that I have been battling for 30 yrs and didn't know about and no dr was able to diagnose me until I figured it out on my own and now I actually believe I was misdiagnosed with narcolepsy as those are just some of the symptoms of this underling disorder that apparently most medical drs are not aware of it and that's why it took me 30 yrs. So 25-30 % of my blood is pooling in my legs and therefore there is a decrease of that blood going to my heart, lungs, and brain which can cause tachycardia, dizzyness, lightheadness, head aches, nausea, respirations issues like sleep apnea or similar symptoms to asthma like sports induced or heat related which could effect you if the weather is too hot or inside taking a hot shower or sauna you can pass out. Due to the decrease of blood to the brain you can have difficulty processing, focusing, concentration, memory, feelings of brain fog, getting light headed, dizzy or head aches if you get up too quickly from lying in supine or if you bend over without using your knees you can see stars and pass out. These are only some of symptoms you may experience from this disorder there are a lot more lol that's why its so hard to get diagnosed because you usually go to a specialist for each issue and come out empty handed. I thought I would share with you guys for a few reasons one if it sounds like you may have a lot of the same symptoms or since everyone in this forum is going for nursing or is a nurse or in the medical field and you have a patient that the symptoms are very similar you can save these ppl years and a lifetime of frustration and depression of not knowing what's wrong with them. Going back to grad school that day when I was ready to pass out at the first break I went to get coffee to see if it would give me any spark of energy even though caffeine doesn't effect me cause I am so fatigue. That didn't work so I took out other class notes to study for another to see if that work and still nothing and as we all know once the sleep spell hits you most times you can't fight it because it feels like you haven't slept in 3-4 days. My last resort was to pull out a Soduku as love doing those puzzles and keeps my mind stimulated as falling asleep in class is kinda rude and gives off the impression that the professor is boring which could be the truth but its b/c of feeling so fatigue. One of the professors cornered me in class and said I saw you went in and out a lot during class. I am like I left once to get coffee and that was during the break and she was like no I meant to say you weren't paying attention and told her the truth that I had sleep apnea and I don't sleep well at night and she was like that must be frustrating and I thought it was over but it was just the pregame and I received an email from the head director that's she wants me to set up a meeting with her. I get into her office and all she is doing is blowing smoke from her nose and ears and fire from her mouth as she was roasting me a live. She kept saying I was so embarrassed on your behalf and I have to call and apologize on behalf of columbia university as this was unacceptable as we had a guest lecture. She goes on and says if you can't handle the two year program maybe you switch to three year program. For all you who understands what occupational therapy is all about - its all about adapting and finding what's in the best interest of your client to help them succeed. They can preach that in every class but when it comes to you or your family life they couldn't care. My dad had quadruple bypass surgery and mom was very stress cooking for the passover holiday and taking my dad to rehab as she was also cooking for my grandparents cause my grandmother was just cleared from cancer and my grandfather bells palsy that she asked me to come down to florida last minute as I got there a day b4 the holiday. I ended up missing an elective that I had to take if I would of remembered I would have booked the last flight out that day for any cost if I would of known that they were threating to fail me for 5 classes I was passing not just that elective. 2 weeks of hell of it being passed infront of the review board. So yes every program and school is different and if I would have known I had it I would have told them this way they would stop picking on me as others mentioned it is a disability and they as well as where your gonna work have to make accommodations for the disability if can do your job just as well as anyone else. When you go for job interview you don't have to be upfront with them until you get the job and they say do you need any accommodations. If your motivated keep up with it, it make take you twice as long or longer to get work down but stay positive. My class had 45 girls and 3 guys and 85% of the girls were brilliant and it did make me feel uncomfortable as I already processed things much slower but as hard as it was and 2 and half years of hell I graduated and now trying to study for the state boards which isn't easy. I made a lot of friends and a lot of the girls were amazing and would always allow me to photocopy their notes or send me their notes they typed up. When I was at fieldwork rotations it definitely helped to always be moving around and going from patient to patient but then writing up notes was almost impossible because I was so tired and could barely focus but I wasn't on stimulants as I am now and didn't realize that I use 3x the amount of energy compared to someone else who doesn't have disorder and running up and down all the steps each time working in a rehab was causing my heart to skyrocket and cause fatigue but hydration is key in my illness and in general whether its water or gatorade for elctrolytes. If you have any questions you want to ask privately please email me or I guess just respond from this message. Thanks and stay strong!

#8 Samwise

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Posted 26 September 2012 - 07:42 PM

I was diagnosed during grad school, and I'm a genetic counselor. My biggest recommendation: tell your director! You never know how much they will understand. For example, my first semester I finally went to the doctor because I fell asleep walking and was having more of what I thoughts were night terrors (hypnagogic hallucinations, really). The doctor referred me to a sleep center but told me she thought at the very least I had hypersomnia. I was so upset and asked if I could see my program director because I wanted to know if she could speak to our class lecturers and let them know I wasnt just bored or a slacker. There were only 5 of us in our class, so you can see how it would be obvious. I never cared when I was in undergrad because, well, giant classes meant it was easier to get away with. Anyway, it turns out my program director's husband was diagnosed with IH, and she was the one that pushed him to go to the doctor. She is one of the few people that can even comprehend what I'm going through because she lives with someone struggling with essentially the same issues. She was one of my biggest advocates, and still is even after I graduated.

My other big suggestion: tell your classmates! All four of my classmates knew, and two of them in particular would discreetly tap my arm or my leg when they saw me nodding off during class. It helped tremendously and I don't think they will ever understand how much they saved me during school.

As far as the school work goes, take frequent dance breaks and make sure you exercise. Those helped me a lot. I would also buy colored pens to draw out my notes in (especially during embryology) because constantly switching pens kept me awake. I also agree with recording lecturers if your program doesn't already do that. Thankfully, ours did and it was a life saver. Keep snacks with you in class, too. Just nommin' on something helped me sometimes to stay awake.

One thing I can tell you is, just because you have narcolepsy doesn't mean people will think of you as the nurse with N. I can attest to that, but in a different way. I work my ass off, and I truly feel like working in the medical field is one of the best areas for N because you're (for the most part) constantly moving. In my profession, I constantly talk and move. But during the few times where I'm sitting and not talking, that obviously hits hard. I have told my bosses and some coworkers though, so they understand if suddenly I just need to walk downstairs to get coffee or just walk around in general. Actually, today one of the MFMs of our practice found out for the first time I have N. His response? "Oh, really?" and we talked about how both myself and his friend with N mainly have the sleepiness issue and not cataplexy. And that was it.

So long story short, don't let this stop your dream! If anything, I think us in the medical field are in a way more fortunate because more people are likely to be understanding of N.

I hope this helps!! :)

#9 tjunderw

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Posted 30 September 2012 - 10:24 AM

That's great advice Samwise, thanks! I actually met with the assistant dean of the undergraduate programs and she was very supportive about my N. She explained to keep her and the other staff informed and to not take school on by myself. I was surprised with all of the accomodations she offered which made me feel a lot more secure. It will probably be another 2-3 weeks until I find out if I am accepted to the university to continue on applying for the nursing school, but she was very encouraging looking at my grades and hearing my pediatric speech therapy experience.


It makes me feel a lot more comfortable that I met with her before applying and hearing how hopeful she was that I could thrive in this program. I don't like to make excuses about N, but there is no way around the fact that sometimes we just need a little more planning to get through our days, especially in a school situation. I'll keep everyone posted on how the next couple of weeks turn out : )

#10 Samwise

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Posted 03 October 2012 - 08:08 PM

That's awesome! And trust me, I totally understand. I don't like making excuses for my N either, but sometimes it's hard to ignore that it does slow you down at times.. Especially when you're on campus for 12 to 14 hours!

#11 Shive

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Posted 06 December 2012 - 12:39 PM

Hi! I am new to this forum and also to the narcolepsy. I have just diagnosed a few months before, and really suffersd a lot because of it. I was really disturb and unable to find any help. I have talked about nursing school to a lot of friends and relatives and get different opinions about the matter. Really unsure about what to do now?
Any suggestions and recomendations would be appreciatede. Thanks to everyone reading my post.