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#1 thecatnapper

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Posted 12 July 2012 - 10:16 PM

I know that no one can give me any answers here but I just need to vent and I guess I'm looking for someone to say "I've been there and you're not crazy". Before I say all of this let me just say that I am as far from being a drama queen as I can get. I'm not an attention seeker at all but when you've had enough...you've had enough. I feel like I'm in a total health crisis. I've gone so long without restorative sleep and I'm so exhausted that I literally feel like I'm going to die soon, either because my body is going to shut down completely or because I'm going to give into the frustration and end it all. Please excuse my negativity but I'm just so grouchy.

For those that don't know I'm still in the process of getting approved for Xyrem. My doctor says I definitely have Narc with Cat but he wants me to have another sleep study, mostly for bureaucratic "red tape" BS reasons. What even lead me to go to a sleep specialist in the first palce is the plethora of physical symptoms that have been increasing in severity in the past year. I've learned a lot about how lack of sleep effects the body but I seem to have an extreme case here. I've been having a problem in the past couple of weeks with excessive fluid retention mostly in my lower legs and feet. It had gotten better and then came back full force yesterday morning and I developed shortness of breath and my belly looks like I'm pregnant. I got on the scales and realized that I've gained 12 pounds in less than a week! Every time I tried to lay down last night I had to sit up because I couldn't breath good and my back was hurting so I didn't sleep at all. Because of my history of having a blood clot in my lung I decided I should go to the urgent care first thing this morning to get it checked out even though my symptoms were not exactly the same as last tim. Just taking a shower and getting dressed got me so out of breath that I felt like I had been jogging.

When the staff at the urgent care saw how incredibly swollen my legs and abdomen were and learned of my medical history they freaked out and called an ambulance to transport me to the hospital. How embarassing! So I got to the hospital and they did a bunch of tests to rule out a blood clot or a problem with my heart or kidneys. Basically after sitting there all day nothing was accomplished except that the amount of medical bills I owe increased. The ER doctor was very kind and told me that he found nothing obvious and could not explain the fluid buildup. He asked me what I thought was wrong and I told him that because of the Narc I think that I'm just so exhausted that my body is shutting down. He agreed that that is what it could very well be. He pretty much just told me to follow up with my primary care doc and gave me the number to a Cardiologist to call if I felt that I needed to see one but didn't offer me any options as far as getting the fluid out.

He said I could go home and I called someone to come pick me up and take me to get my car. I drove home, went straight to bed, and slept for about 6 hours. I'm still just as swollen as when I laid down but at least my breathing is okay. So, here I sit in tears having a pity party. I'm absolutely miserable but no doctor can point to a definitive reason why. Every time I go with symptoms like this they do blood work and when it comes back normal they just shrug their shoulders and send me on my way. It feels like they are somehow blaming me for it but I realize that's probably just in my head. I don't know how much longer I can keep living like this. I'm seriously considering calling my Neurologist in the morning and telling him that I'm not waiting another 2 weeks for the second sleep study and that he needs to go ahead and get the ball rolling as far as whatever crap he has to do to get me the Xyrem. That's his job that he gets paid extremely well to do it. I understand that having a more concrete study would make the process easier but it's not my responsibility to make it easier for him.

Thanks for listening and again, I'm really sorry to be so negative. I always try to post more positive things but right now my "rope" feels more like a tiny string and it's going to break soon if something doesn't change.

#2 drago

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Posted 14 July 2012 - 04:35 PM

I know that no one can give me any answers here but I just need to vent and I guess I'm looking for someone to say "I've been there and you're not crazy". Before I say all of this let me just say that I am as far from being a drama queen as I can get. I'm not an attention seeker at all but when you've had enough...you've had enough. I feel like I'm in a total health crisis. I've gone so long without restorative sleep and I'm so exhausted that I literally feel like I'm going to die soon, either because my body is going to shut down completely or because I'm going to give into the frustration and end it all. Please excuse my negativity but I'm just so grouchy.


I'm sorry you're forced to drudge all this. I've been there, been through this, and the one thing I've found out is this: sometimes you have to push back. The urgent care facilities and the emergency room staff all have to deal with time and resource limitations. Sometimes you have to make it clear that YOU are the one who deserves their time and resources.

I find this difficult personally because I am not a naturally competitive person. Add narcolepsy and being tired, and you have a laid back person who is too tired to make a dramatic scene. Also, I hate stepping outside of my character and becoming the 'demanding drama chick' because it makes me feel like crap. It's just not me. I'm not sure if you are similar in disposition, but if you are, there are other ways of pushing for yourself that don't require you to be a drama-queen.

Being so fatigued that you cannot safely function is not something that should be ignored. That's like having a pain score of 7 to 10. Sadly, I have yet to find a single doctor who uses a "fatigue scale" from 1 to 10. You might have a type of fatigue (tiredness, muscle fatigue, mental fatigue, etc.) but there seems to be a complete absence of ranking fatigue. I personally believe that this is because people - doctors included - don't take sleep seriously. Or, at least, not as seriously as they take pain. Pain gets a scale. Fatigue is left vague. Apparently, no one goes to the ER or urgent care because of "horrible fatigue" (and if they do, it's in conjunction with other symptoms.

Point #1: Make sure the medical staff takes your fatigue seriously. Describe it in extreme detail if you have to.

Point #2: Just because you have narcolepsy doesn't mean that your tiredness is ALWAYS due to narcolepsy. You could have a cortisol problem, a nutritional deficit, an infection that has made you tired, poor thyroid function, and even a cardiovascular issues that could cause extreme levels of fatigue. With a DX of narcolepsy, it's easy for the medical community to write off all tiredness and sleep-related function to narcolepsy. This is a big problem, as fatigue is one of the most basic elements of disorders, diseases, and nutritional issues; don't forget to ask about the possibilities.

For those that don't know I'm still in the process of getting approved for Xyrem. My doctor says I definitely have Narc with Cat but he wants me to have another sleep study, mostly for bureaucratic "red tape" BS reasons. What even lead me to go to a sleep specialist in the first palce is the plethora of physical symptoms that have been increasing in severity in the past year.


I had the same problem on my first prescription (Provigil). It ended up not working out for me, but before I knew that, my insurance turned down Provigil payments because of a "BS red tape" issue. All my doctor had to do was write a letter to the insurance company to fix this. I think Xyrem has a bit more red tape because it is heavily restricted, but an additional sleep study shouldn't be required if the DX is confirmed. Especially if you started stimulants for EDS/Daytime symptoms -- often you have to cease them for 2 weeks before the study.

Point #3: Bureaucratic BS red tape is often easily cut by simple statements. For example, "I can't afford another sleep study" or "I can't go untreated for two weeks to do the sleep study again." Just telling your doctor this can make them consider elements that they failed to before, such as costs and lifestyle conflicts from medical re-testing that is (often) unnecessary.

My new neuro asked me to redo my sleep study, after being dx for 2 years, because the 'numbers could be better.' Essentially, I was DX'd young and rather quickly, so my REM Onset Average was 8 minutes (desired is 5 minutes). I said that the sleep study was a miserable event for me (which it was) and that the lack of treatment for two weeks was dangerous and that the cost was ridiculous. She then recommended documenting my other symptoms better so that my DX would be clearer in the charts, and all that was basic in-room Neuro testing that cost nothing more than a regular visit.

I've learned a lot about how lack of sleep effects the body but I seem to have an extreme case here. I've been having a problem in the past couple of weeks with excessive fluid retention mostly in my lower legs and feet. It had gotten better and then came back full force yesterday morning and I developed shortness of breath and my belly looks like I'm pregnant. I got on the scales and realized that I've gained 12 pounds in less than a week! Every time I tried to lay down last night I had to sit up because I couldn't breath good and my back was hurting so I didn't sleep at all. Because of my history of having a blood clot in my lung I decided I should go to the urgent care first thing this morning to get it checked out even though my symptoms were not exactly the same as last tim. Just taking a shower and getting dressed got me so out of breath that I felt like I had been jogging.

When the staff at the urgent care saw how incredibly swollen my legs and abdomen were and learned of my medical history they freaked out and called an ambulance to transport me to the hospital. How embarassing! So I got to the hospital and they did a bunch of tests to rule out a blood clot or a problem with my heart or kidneys. Basically after sitting there all day nothing was accomplished except that the amount of medical bills I owe increased. The ER doctor was very kind and told me that he found nothing obvious and could not explain the fluid buildup. He asked me what I thought was wrong and I told him that because of the Narc I think that I'm just so exhausted that my body is shutting down. He agreed that that is what it could very well be. He pretty much just told me to follow up with my primary care doc and gave me the number to a Cardiologist to call if I felt that I needed to see one but didn't offer me any options as far as getting the fluid out.


Edema (fluid build up) is a serious symptom. (As you can tell from the reaction at urgent care!) Unfortunately, this could be a symptom of heart or liver failure, among other things. So they probably tested for the "worst case scenario" of heart and/or liver failure. ERs work on super-acute issues; sometimes you have to ask to be admitted -- especially when "all the tests are normal" meanwhile your body is swollen. Clearly something is wrong!

He said I could go home and I called someone to come pick me up and take me to get my car. I drove home, went straight to bed, and slept for about 6 hours. I'm still just as swollen as when I laid down but at least my breathing is okay. So, here I sit in tears having a pity party. I'm absolutely miserable but no doctor can point to a definitive reason why. Every time I go with symptoms like this they do blood work and when it comes back normal they just shrug their shoulders and send me on my way. It feels like they are somehow blaming me for it but I realize that's probably just in my head. I don't know how much longer I can keep living like this. I'm seriously considering calling my Neurologist in the morning and telling him that I'm not waiting another 2 weeks for the second sleep study and that he needs to go ahead and get the ball rolling as far as whatever crap he has to do to get me the Xyrem. That's his job that he gets paid extremely well to do it. I understand that having a more concrete study would make the process easier but it's not my responsibility to make it easier for him.


I relate to this paragraph entirely. I went to my neuro with a weird flushing/skin symptom, and my neuro insists it must be a thyroid problem. I go to my regular doctor and ask for a thyroid test and it's "normal," but I should go to an endocrinologist to be sure. I go to the endo, and the endo insists that the symptom must be neurological or possibly cardiovascular. It seems impossible to get two doctors to get on the phone for a consult over a patient! And meanwhile us patients are on the Doctor-Merry-Go-Round wasting time and money and not getting answers (and not even getting a comprehensive exam).

It's hard for me because if I get emotional - esp. when I am angry - I become very tired. Frustration doesn't help. When a doctor can see my symptoms but can't explain them with the labs, it can be impossible for me to keep pushing them for more information. "What else could it be? What else can we check right now?" etc.

Point #4: Writing things down makes it hard for them to ignore or to write off as you being "angry."

Type up my medications (and my symptoms sometimes, too) and bring them to appointments. This prevents me from forgetting to ask about something AND helps me push for more information when the tests come back "normal." A spoken symptom is a unicorn, a mythical creature that can transform into a horse when you're not looking. A written-down symptom remains written down and solid.

Thanks for listening and again, I'm really sorry to be so negative. I always try to post more positive things but right now my "rope" feels more like a tiny string and it's going to break soon if something doesn't change.


This is a great place to vent. A lot of us have had similar problems and have struggled with the same crappy medical system issues. I hope you're doing better.

drago

#3 Enginerd

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Posted 15 July 2012 - 06:17 AM

I'm absolutely miserable but no doctor can point to a definitive reason why. Every time I go with symptoms like this they do blood work and when it comes back normal they just shrug their shoulders and send me on my way.

Thanks for listening and again, I'm really sorry to be so negative. I always try to post more positive things but right now my "rope" feels more like a tiny string and it's going to break soon if something doesn't change.


Hey, I know how you feel. I've heard the exact same words from doctors time and again, and I've felt as frustrated and hopeless as you for a long time now. One important thing to remember is that ER doctors aren't trained to treat any chronic problems; they're trained to stabilize you and get you out of there as soon as possible. So the doctor only ordered the tests that were medically relevant to ensuring that you weren't having any kind of crisis, then sent you on your way. In and out.

This is by no means any medical commentary on your overall condition--more thorough and extensive work-ups are done by GPs and specialists. Unfortunately, although much of the literature includes figures for people who have a disease but don't test positive for it via bloodwork, doctors don't seem willing to diagnose without positive test results these days. It's possible you fit into this ambiguous category. Also, narcolepsy is potentially autoimmune, and autoimmune diseases usually travel in 'packs'...so if you have one, you will likely develop another one or two in your lifetime. Just something to keep in mind as you move forward. If you haven't been tested for other autoimmune diseases and you have symptoms that don't fit the narcolepsy profile, you might want to ask your GP or visit a rheumatologist to order some specific bloodwork to look at immunoglobulins, yeast antibodies, Celiac sprue, ANA, dsDNA, ESR, thyroid panel, glucose tolerance test, etc.

In your case, I really think you should see a cardiologist or pulmonologist first. Which, if any, have you seen in the past? Your symptoms were very suspicious of a clot, or at the very least some kind of kidney/heart problem or beginning stages of COPD. I wouldn't ignore it. It's definitely not narcolepsy shutting down your body. Narcolepsy depletes hypocretin in your brain, which regenerates. Fatigue can stress your body, but it's not going to cause fluid accumulation at the level you describe, shortness of breath, and back pain. With your history of a lung clot, you should follow-up with your specialist(s), just in case.

Hang in there. Things will get better. In the meantime, rant as much as you want! We'll be listening. :D

#4 thecatnapper

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Posted 15 July 2012 - 04:35 PM

Thanks guys for the feedback. I've had a ton of autoimmune symptoms for at least the last 13 years. I've been tested several times for Lupus. I've also been tested for Behcet's syndrome and Wegner's granulomatosis, and a couple of blood disorders....all negative. I've had multiple upper and lower endoscopies and biopsies for celiac which was normal even though I tested positive for anti-gliadin antibodies. They've even tested me for HIV which thankfully I do not have.

The E.R. doc that took care of me on Thursday called me yesterday morning to see how I was doing. He was a really nice guy. I worked with him back when he was a resident at another hospital. I realize that the E.R. is just for stabilization and acute assesment but I also know that a specialist will look down his or her nose at the fact that all of the tests came back normal. I hadn't thought of it until you mentioned it but you are right, now that I have a Narcolepsy diagnosis I will never be able to get them to take my fatigue seriously as anything else. That's just freakin' great!

Back in April I went to a new primary care doc and she started out nice and listening and then when she saw that my labs were fine she totally blew me off and basically told me I was just a stressed out fat chick. She even accused me of making up things in my history. I took pictures of me from just 3 years ago to show her the drastic difference in my body. She barely even looked at them and said that it was perfectly normal for someone my age to gain weight as rapidly as I have. It may be "common" but it certainly is not "normal". I feel that I have some terrible Endocrine thing going on but I could not get her to do any more tests than the original ones that she ordered which were to check my Testosterone and AM Cortisol. It would take all day to explain all the symptoms. She refused to send me to an Endo and told me that they would laugh me out of their office if I went to one anyway because my labs "don't indicate a problem". She checked my TSH but not T3 and T4 and rolled her eyes when I suggested that she check those and also check my Cortisol later in the day as well. I highly suspect that I'm one of those patients that doesn't fit neatly into the normal reference ranges for most blood tests. I think the main problem with her is that she thought I was just having a vanity attack but I passed the "OMG...I'm so fat" stage a while back. Now it's an issue of being concerned about my health.

I don't understand doctors these days. You'd think they would appreciate a patient that believes in advocating for their own health and being proactive in their treatment. Most doctors absolutely ignore a patients' intuition and they get all bent out of shape about patients researching their symptoms online and asking questions. I know beyond any doubt when something is wrong with my body. Every time I've had a major illness I've basically diagnosed myself before I even walked into the doctor's office and I was right every time. Apparantly doctors see that as me stepping on their toes even though I don't walk in with a know-it-all attitude or at least I try not to. I'm just too tired to go to anymore doctors and to fight for a diagnosis just like I've had to fight for every other diagnosis I've ever gotten.

I'm going to call my Neuro in the morning and tell him that I'm not going to have another sleep study and that he'll have to use what documentation he has to get me on Xyrem. If the insurance idiots say no, we'll just have to go from there. He is a very understanding guy so I don't think he'll be a turd about it. Meanwhile I'm cutting out gluten and as much salt as possible to see if I can get rid of the swelling. Hopefully the holistic approach will work. I'm just so thankful for all of the emotional healing that I've done in the past year or so because if I hadn't gotten over all the old crap, I would certainly not be able to handle all of this physical and mental stress that I'm under right now. If this had happened 2 years ago I would surely have killed myself by now.


BTW, I still look like the Stay Puff Marshmallow Woman but I had lost 2 lbs last time I checked.

#5 thecatnapper

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Posted 16 July 2012 - 07:23 PM

***Update***

Remember how I said that when I saw my Neuro two weeks ago he said he could get me Xyrem without another sleep study? He said it would be difficult but that it could be done but he asked me to please try to have another study to show proof on paper and I agreed. Well, after the last several days that I've had and the awful physical effects of not being able to sleep without meds I decided that I would call and ask him to go ahead and start the paperwork because I don't feel like I can stand to be off meds in order to have the second study. First I called and left a message for his nurse with the front desk. After about 4 hours she called me back and I told her about what kind of physical shape I am in and told her that I've had all I can stand and she just talked to me like I was a child. She said it was IMPOSSIBLE to get Xyrem for me without me having another sleep study. I told her exactly what the doctor had told me and told her that he said if I had the second study and still could not sleep that I shouldn't worry about it because he could still get it for me but it would be more work for him. She kept saying it was impossible and then she said that SHE was the one that had to do all of the paperwork to get it and went on and on about what a pain it was. I'm no fool and I'm quite good at reading between the lines and that means that Nursey doesn't want the extra headache for herself! It was obvious that she was indifferent to my suffering and I got sick of arguing with her and said fine...nevermind...and hung up on her. I'm sure she didn't even tell the doctor I called because she knew he would tell her otherwise. I don't know why they call it health"care" when it seems that these days hardly nobody cares about the patients anymore. It makes me sicker than I already am!

Sorry, I'll stop griping now!

#6 lilmomm

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Posted 18 July 2012 - 07:14 PM

I used to do PA's for meds in a doctor's office and most doctor's don't know much about the process and what insurance will and won't approve. I know of a few insurance companies that will absolutely refuse a medication, regardless of the patient's issues, unless thier very specific qualifications are met and documents proving so being faxed to them. Some insurance companies are not that bad but others are horrible. I do know that a lot of insurance companies will let the insured call and get an approval if they have all the information necessary and can prove they really need it. It may be a lot of hassle but you may be able to get it approved yourself. Hope this can help you!

#7 Megssosleepy

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Posted 10 August 2012 - 12:21 PM

I went to see an ENT the other day for ear, jaw pain, and a big ol lymphnode (not scik) I was actually hoping that I could have Cancer just so I can blame it for my tiredness and could have a cure.

I just wanted to say its okay to be grumpy and you really have no need to apologize jut think of the 3 year old you see out past his/her bedtime she is crying and certainly grumpy! I also agree completely with the fact that if you dont get enough sleep your body just goes haywire!!

There is a new book coming out Monday (preordered on Amazon) its called Dreamland: Adventures in the Strange Science of Sleep. I read a little tid bit the other day and I think it will explain A LOT about sleep and maybe have some tips or ideas to help.

One last thing... I am really sorry your sleep doc is making you jump through hoops. Mine just made me try all the other Stimulates before I could do the Xyrem... now that I am on it I am very happy I was able to try it out. Havent seen much of a difference but I did just start!

#8 thecatnapper

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Posted 10 August 2012 - 10:19 PM

I'm feeling much better actually. The swelling comes and goes and I still have no explaination for it. I've just made up my mind that I'm not going to focus on how "bad" I feel anymore and just do as much as a can when I feel like doing more. I had the second sleep study and he got enough info to go ahead with getting the Xyrem being that I've taken the Nuvigil for a while with little help and I took Adderall for almost a year and my sleep got worse. So now I'm in the phase of getting my insurance to approve the Xyrem. If they do that's great, if they don't....I'll get over it. My Neuro suggested that I keep trying to find out what's causing the other symptoms but I'm just done with running here and there and seeing all these doctors. It seems that the more I focus on the negative, the more negative I percieve it all to be. So, I'm trying to accentuate the positive. I've been getting back to crafting and am making plans of fixing up my house and property and that keeps my mind in a more pleasant place.

The book sounds very interesting. I love anything that has to do with dreaming. Hopefully the local library will get a copy that I can check out. I don't think we'll ever have a concrete explaination for the how, why, and where as far as our minds go when we are in REM but the theories are pretty interesting.

#9 Enginerd

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Posted 19 August 2012 - 08:48 PM

I went to see an ENT the other day for ear, jaw pain, and a big ol lymphnode (not scik) I was actually hoping that I could have Cancer just so I can blame it for my tiredness and could have a cure.


A short time before I received my narcolepsy diagnosis, I had the same issue--enlarged lymph nodes (multiple, bi-lateral) in my neck that had been present for at least 2 years. I had several doctors and my dentist point them out, so I finally visited an ENT. He also discovered swollen adenoids (but not shockingly large tonsils, which made the situation even more odd), something that shouldn't ever be present in an adult. I thought, "Finally, I'll figure out what the heck has been going on with me for so long," because I was so incredibly sick and tired of feeling sick and tired.

I had my adenoids removed and immediately following the procedure, my ENT visited me in the post-op room to tell me he had found a mass on them. He appeared very concerned and was laconic, which is unusual for him. I was told to schedule an immediate follow-up appointment with his office to hear the biopsy results and discuss a course of action. Honestly, I thought it was cancer since my ENT seemed to think it was, and I was hoping it would be...because that would mean I finally found the answer I had been searching for all these years--and knowing is half the battle. When I walked into his office a week later, the first words out of his mouth were, "Well, we got the biopsy results back, and you don't have cancer!" I felt relieved (because who wouldn't be?), but lost at the same time. Just another "unknown" symptom to add to my growing list...and yet another test that had yielded no information.

So I know how you feel, and I'm glad to know I'm not the only one who had the same thought. Because it didn't come from a place of depression, or craziness...it came from a place of strength. If I knew what I had, I would then be able to fight it. Plus, as you pointed out, cancer can be curable. Narcolepsy, on the other hand...................<_<

#10 Megssosleepy

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Posted 20 August 2012 - 11:54 AM

A short time before I received my narcolepsy diagnosis, I had the same issue--enlarged lymph nodes (multiple, bi-lateral) in my neck that had been present for at least 2 years. I had several doctors and my dentist point them out, so I finally visited an ENT. He also discovered swollen adenoids (but not shockingly large tonsils, which made the situation even more odd), something that shouldn't ever be present in an adult. I thought, "Finally, I'll figure out what the heck has been going on with me for so long," because I was so incredibly sick and tired of feeling sick and tired.

I had my adenoids removed and immediately following the procedure, my ENT visited me in the post-op room to tell me he had found a mass on them. He appeared very concerned and was laconic, which is unusual for him. I was told to schedule an immediate follow-up appointment with his office to hear the biopsy results and discuss a course of action. Honestly, I thought it was cancer since my ENT seemed to think it was, and I was hoping it would be...because that would mean I finally found the answer I had been searching for all these years--and knowing is half the battle. When I walked into his office a week later, the first words out of his mouth were, "Well, we got the biopsy results back, and you don't have cancer!" I felt relieved (because who wouldn't be?), but lost at the same time. Just another "unknown" symptom to add to my growing list...and yet another test that had yielded no information.

So I know how you feel, and I'm glad to know I'm not the only one who had the same thought. Because it didn't come from a place of depression, or craziness...it came from a place of strength. If I knew what I had, I would then be able to fight it. Plus, as you pointed out, cancer can be curable. Narcolepsy, on the other hand...................<_<


I told only one friend about my hopes and confided in a coworker... the friend understood and the coworker was shocked that I would actually want Cancer!! I just want something that can be cured!! I am so tired of being tired, and if I had something other then N maybe my family and friends would understand...

Thank you for sharing... I am always amazed when I find out that I am not alone in this, that there are others who feel the same way!!

#11 thecatnapper

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Posted 21 August 2012 - 02:00 AM

I told only one friend about my hopes and confided in a coworker... the friend understood and the coworker was shocked that I would actually want Cancer!! I just want something that can be cured!! I am so tired of being tired, and if I had something other then N maybe my family and friends would understand...

Thank you for sharing... I am always amazed when I find out that I am not alone in this, that there are others who feel the same way!!


Cancer seems to be the only medical condition that people understand or respect. Anything else either gets ignored or people say "oh I've got a cousin with that and she does just fine with it" just like everyone who has the same condition has the same process and severity of symptoms or something. When I had my severe GYN issues and was in pain people would say "well you can't die from it" or "well at least you don't have cancer" and I'd say, "well when you have cancer you either get a cure or you get to die and be relieved of the pain". People thought that was a morbid thing to say but they wouldn't think so if they lived with constant daily pain. I've decided I'm not telling anyone else anything that I get diagnosed with, including family if it can be avoided. I've said it a million times, we don't owe anyone any kind of explanation for why we live the way we do. It's none of their business, whether they mean well by asking or not.

#12 Hank

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Posted 21 August 2012 - 09:02 AM

When I tell people, I focus on how N/C impacts me, instead of saying Narcolepsy and expecting them to understand. For right now, I only want people to understand the impact on my life. I only give the "name" to a trusted few who will not spread the news through the grapevine- especially at work.

This is close to what I say: As it turns out, I have had a rare medical disease since childhood and never knew what it was. It takes an average of 10-15 years to make the diagnosis because most doctors have never seen a case. About 4 times a day for, I feel like I did when I had Mono. In fact, when I did have mono, I didn't even realize it because I always feel like that. I thought everyone felt like that. I have only been able to manage these episodes of exhaustion with diet and exercise. I also experience unexpected brief muscle paralysis, which has caused me injuries I could never explain. Like when I broke my arm last year. I felt like an episode of "House" or "Mystery Diagnosis". My body does not make a protein that regulates a some important functions and that protein was only recently discovered.

I avoid saying "muscle weakness" to describe Cataplexy because people tend to define that with their own definition of weakness. Oh, everything feels heavy? No, look at my leg and try to move it- does my leg feel heavy to you when you try to move it. I avoid referring to sleep because it is too misunderstood- that's why I say exhaustion. I feel like I need my own marketing plan to avoid confusion. People seem harder to manage than N or C. When I build some understanding, people tend to want to be supportive. I just need to guide them in supporting the most importand aspects. When I say it like this, people tend to be very supportive and almost congratulate me, rather than picture me asleep face-down in my dinner- like the guy in the movie.





#13 Megssosleepy

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Posted 21 August 2012 - 09:33 AM

This is close to what I say: As it turns out, I have had a rare medical disease since childhood and never knew what it was. It takes an average of 10-15 years to make the diagnosis because most doctors have never seen a case. About 4 times a day for, I feel like I did when I had Mono. In fact, when I did have mono, I didn't even realize it because I always feel like that. I thought everyone felt like that. I have only been able to manage these episodes of exhaustion with diet and exercise. I also experience unexpected brief muscle paralysis, which has caused me injuries I could never explain. Like when I broke my arm last year. I felt like an episode of "House" or "Mystery Diagnosis". My body does not make a protein that regulates a some important functions and that protein was only recently discovered.

I avoid saying "muscle weakness" to describe Cataplexy because people tend to define that with their own definition of weakness. Oh, everything feels heavy? No, look at my leg and try to move it- does my leg feel heavy to you when you try to move it. I avoid referring to sleep because it is too misunderstood- that's why I say exhaustion. I feel like I need my own marketing plan to avoid confusion. People seem harder to manage than N or C. When I build some understanding, people tend to want to be supportive. I just need to guide them in supporting the most importand aspects. When I say it like this, people tend to be very supportive and almost congratulate me, rather than picture me asleep face-down in my dinner- like the guy in the movie.


I love this post! I am going to start explaining it to those I would like to know in a similar fashion. Because just saying I have N is so dismissed. I just want to lead a normal life and be respected when I am in a complete metal fog. My last semester (10 years in counting) in college starts next week, and I plan on having this discussion with my teachers. Thank you so much for sharing! This will definitively change how I approach people who "need" to know!

#14 Enginerd

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Posted 27 August 2012 - 01:05 PM

I told only one friend about my hopes and confided in a coworker... the friend understood and the coworker was shocked that I would actually want Cancer!! I just want something that can be cured!! I am so tired of being tired, and if I had something other then N maybe my family and friends would understand...

Thank you for sharing... I am always amazed when I find out that I am not alone in this, that there are others who feel the same way!!


No problem; I completely get it! I still wish I had something curable...and as for my other unexplained symptoms (non-narcolepsy), I'm still very frustrated that I don't have an answer! :mad:

#15 thecatnapper

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Posted 27 August 2012 - 03:05 PM

I loosely took Hank's advice when I did finally contact a friend that I hadn't spoken to in about 9 months. I've walled myself off from nearly everyone while I've been going through the worst of my symptoms and the testing. She of course remembered that last time we spoke I was starting to really have a lot of health stuff going on. She asked me how I was feeling and all of that. I just told her that I had been diagnosed with one condition and was being tested for another. I told her that I was doing very well mentally and spiritually but that I was still struggling quite a bit physically but was trying to be more positive about it. I also said that the name of my condition or suspected conditions are not important except for treatment purposes and that I would not let any of this define me. She was very kind and realized that I did not care to discuss it further or be asked specifically what the name of said condition was. She has a lot of after hours social events at her boutique and I used to help her with the events but I've not been able to in a long time. She invited me to come and hang out when I felt like it and I told her that I would probably be getting out more once the weather cools down a bit.

I've developed some nasty heat intolerance since my ER visit that day and my Neurologist is concerned and is now testing me for other autoimmune conditions including MS. He's a freakin' genius and I'm thinking if anyone can or will figure it out it will be him. I'm only sharing this with a couple of trusted friends and I told my Nephew yesterday but don't plan to tell anyone else in the family until I know anything for sure and have had time to process it on my own. I haven't gotten my Xyrem yet. It got put on the back burner for 2 weeks while the doctor was out of the office the first week and then last week his nurse was on vacation. So my Narc is still untreated but I'm making the best of it and just sleeping when I can. I had no idea this would be such a long process. My first visit with him was at then end of May and here we are 3 months later and I'm still not treated but at least I have the diagnosis and a great doctor that's interested in helping me sort out my other issues. Sometimes progress is just slow.