7 Things I Did So I Didn't Have To Wait For A Diagnosis Anymore
Posted 13 August 2011 - 07:01 PM
My start is identical to most of you here. I have been misdiagnosed with everything under the sun and slowly fought through life always missing out on more and more things, always embarrassed, always blaming myself, always getting blamed, secretly suffering from confusing symptoms, etc.
It wasn't until this winter that I learned about Narcolepsy and Cataplexy and my regular doctor referred me to the head neurologist at a major city hospital. I went off all medications, kept a sleep diary and waited months for my appointment.
As I expected, at the appointment the doctor decided I needed sleep tests done so I scheduled and waited for those. Then I waited months for the results (fancy famous doctors take longer because they are busier.) Then MRIs were ordered and then I waited months for those results. While waiting I secretly scheduled an appointment with a different neurologist who specialized in sleep disorders (young guy just out of med school, no long wait for appointments, and he gave me over an hour of his time for each appointment) and he ordered his own set of tests. I thought surely someone would have an answer soon.
In the end the first neurologist declared I had idiopathic hypersomnia and monosymptomatic hypersomnia to which I think I responded with "WTF!" and then he said I should redo the sleep tests in a year and maybe then my results would show clear cut Narcolepsy with cataplexy and then insurance would pay for me to be put on better meds. The second neurologist thought the monosymptomatic cataplexy diagnosis was ridiculous, and he said he thought maybe I had Narcolepsy with Cataplexy but until my test results were more clear he couldn't confirm the diagnosis enough to satisfy my insurance company so there's no point in him prescribing Xyrem and maybe I should just retry several of the old medications I had tried before and been on for years. He said sometimes it takes years because there really isn't a perfect way to know if a patient has Narcolepsy with Cataplexy and most of the widely accepted tests are only 80% accurate so even if he thinks a patient has it, it just won't matter unless there's enough evidence to satisfy the insurance companies.
I was so frustrated because I knew I had this condition, information about it read my my own private diary, I knew my tests showed it but "didn't show it enough", I was annoyed that now my whole life seemed to be about trying to prove my condition enough to satisfy some insurance company so I could be prescribed better medications. The idea of waiting another year or longer was out of the question. I'd go insane if I had to spend another year doing nothing. There are only so many times you can wake up in an ER with people staring at you until you become scared to leave the house unattended and your loved ones don't want to be around you unless you agree to use a wheelchair because they are so freaked out you are going to collapse at any sec.! I love my family but they seemed to need this official diagnosis more than anyone, like they needed proof of why I was having the symptoms I was. It was maddening and I felt like my life was being hijacked by this need for an official' diagnosis b*llsh*t and in the mean while my whole life had become a world of "used to." As in "I used to be able to work and make good money", "I used to have enjoyable relationships in my life", "I used to be able to go grocery shopping without fearing I'd cataplexy in the parking lot and get run over by a car", or "I used to have lots of friends but now I'm too sleepy and I watch 6 episodes of Law and Order a day." Focusing on "used to" and everything I lost and everything I couldn't do and how angry I was at the unsupportive people around me was consuming me and I had to make a change and fast.
So instead of waiting, being miserable and overwhelmed and accepting that I was just too tired and too prone to cataplexy to safely participate in life and that I just had to accept waiting for doctors and tests and insurance companies for months or years for who knows what..... I became more proactive, determined and focussed. I made taking care of my condition my #1 priority in life because if I didn't make it #1 then my condition would continue to undermine my ability to do anything else.
-First brilliant thing I did: I joined Narcolepsy Network and got their awesome booklet, pamphlets, newsletters, etc. in the mail. I read them cover to cover and shared them with the people closest to me and I began more opening discussing my condition with them and my frustrations with the diagnosis dilemmas. Practicing talking to people more openly about the condition that was holding my mind and body hostage was crucial for me.
-Second brilliant thing I did: I met someone else with Narcolepsy with Cataplexy. I live on an island 30 miles out to sea and after searching in vain I knew I'd have to travel to find someone and that's tough for me because of my N and C but because I knew it would mean helping me with my #1 goal in life, I had to do it. - It's the best thing I ever did.
I met a great guy through the internet who was posting about his N and C who lived within a few hours of me. We exchanged emails, then IMs, then we talked on the phone a lot, then we Skyped and then visited one another. Meeting someone else with N & C changed my life instantly. I highly recommend anyone with N & C make it a priority to just find and meet someone else who has this. It's the very best thing you can do for yourself and for your loved ones because once you better understand your condition and feel less isolated, it opens up a comfort level and dialog about aspects of this condition that you just didn't even ever think about ever discussing before. Opening up about the awkward big and little impacts N and C help you better understand yourself as well as what people around you are going through. This condition really causes so much psychological warfare in our heads everyday as we struggle to just be and seem socially appropriate. Most regular people usually can't fully understand without lengthy explanation, all the things we would say if we held nothing back, things like "hey just now while you were talking I had the craziest dream." or "Wow look at the time, I have no idea what has been happening for the last 10 minutes." or "Like it or not I have 5 seconds to lay down on this floor by choice because after that my body will make me do it by force." or "I hate when I feel pressured to act sleepy after coming out of a sleep attack or cataplexy, but I hate it even more when I seem too alert too soon to people and they accuse me of faking a Narcolepsy attack." or "Please stop talking you are making me so angry I can't move my arms." or "I'd love to have a dinner date with you but if I eat too much I'll totally pass out before we get to the foreplay at my house and I have no idea how I'll stay awake for that either." or "I love your kids but if they squeal like that again I'm likely to land on top of one of them." or "I like your house that carpet looks soft, if I fall I plan to aim myself in it's direction." or "I'd love to go out with you but I have to waste the day sleeping because I accidentally let myself think about how much I resent that I have this wacko disorder that plays such a huge crazy role in my life everyday but I have to pretend like it's no big deal because you feel that discussing medical issues is boring and uncomfortable for you!" or "Oh Hell is that spider real or a hallucination, I can never tell the difference, please throw a shoe at it for me just to be on the safe side!" or "Please stop talking, I'm concentrating on not enjoying this ice cream so much, I hate calories I later don't remember eating!" or "You are so great and watching this sunset with you is so wonderful that I have to think about dead puppies in a washing machine just to keep myself from smashing my head into the ground." Seriously, if you said any of this stuff to most normal people, you'd have to spend the next half an hour explaining yourself!
I used to be so angry at how unsupportive I felt my friends and family were of my condition (okay I'm still pretty pissed) but at least now I better understand what they are going through. Until you have to stand by and help your friend who cataplexies in public, it's hard to understand the strain it puts on them. After having my friend cataplexy in public a few times I better understood the demands I put on people that I didn't fully appreciate before: A friend of a cataplectic person has to, at any minute, with no warning, suddenly try and catch someone collapsing or try and move their dead weight from harms way and quickly assess if you are hurt. Then they immediately have to calm down a suddenly emotionally frightened group of strangers who witnessed the person fall. They have to suddenly educate them all about the condition quickly and efficiently while maintaining their credibility so people don't call 911 if it's not needed. They have to apologize and chit chat it up with the business owner, driver, hostess, or whoever else suddenly is sort of forced to have this really awkward experience of putting up with a person lying appearingly dead on their floor for the next 2 to 20 minutes or so. They have to help protect your dignity as much as possible so you can come out of it sooner rather then later and preferably with as little utter humiliation as possible while at the same time not rush you because it's takes a few min. to get your strength back after you open your eyes. And they have to sometimes make a medical or social judgment calls you might not immediately or later like in the event you are still fuzzy brained or not aware of something that happened while you were lying there..... that's quite a bit to ask of a friend or family member. Cataplexy is not for the faint hearted and it's understandably terrifying for friends who are introverts or scared of public speaking or whose mids tend to go blank when there's a crisis of any kind. I now better understand why some people in my life don't want to spent as much time with me or only want to spend time with me if I'm in a wheelchair or at home, etc. I still kind of resent being left out or nagged at with "Are you okay? Are you gonna make it? Are you sure?" (they have post traumatic cataplexy stress) but at least now I better understand why. I been the person who cataplexies in public and been the person helping someone who cataplexies in public... honestly... I think being the person helping the person who cataplexies is more stressful and embarrassing, but becoming miserable over what a burden my existence is really isn't going to help anyone so I highly recommend ignoring thoughts like that because it's too depressing and it'll make you tired real fast if you are anything like me.
Discussing feelings, experiences, frustrations, etc. also helped me come up with more ways to help myself and my situation that I otherwise wouldn't have thought of. And meeting someone else with N and C also helped people around me better understand my condition. Once they saw someone else with the same symptoms they realized that maybe they were attributing more of my illness to my personality then they realized. Once they saw someone else with the same needs, similar habits, etc. they just better understood everything. If you look on YouTube for the Narcolepsy conference documentary you'll see lots of family members of people with N and C say the same thing, once they saw other people who had it, they better understood the illness and that it wasn't a lack of desire to fight the symptoms, etc that held their loved one back, it was the illness.
-Third brilliant thing I did: I came up with new back up plans for myself. I already knew I needed to plan to try again with a Neurologist, I had to look and various insurance options for myself, find out if I needed to file for disability and if so what ground work could I do now that would help the process along faster (accept less financial help from my family, spend down my savings, have my parents set up a special trust in their will???) I also looked into various different medication options and MOST IMPORTANTLY - I came up with a plan of what to do if no medication ever helps me. Thinking if I don't get this or that medication means my world would come to an end, was too stressful. So I decided to make a plan for what I'd do if I didn't ever find relief from my symptoms through any medication, that way I wouldn't be so stressed out. For me, that plan was to look into getting on the waiting list for an assistance dog, learn to accept wheelchair use in my life, and learn to ask for help. Once I went to the assistance dog training facility and saw just how much those dogs could do. I realized that no matter what I could probably be okay and get more independence and joy back in my life. an assistance dog means could protect me from suffocation by rolling me over, calm strangers when I'm on the ground so they realize this isn't an unexpected medical crisis, drag me away from danger, help people better understand I have a real medical condition and not a desire for drama, assistance dog's presence also help their owners feel more comfortable talking about the condition openly, also it's presence would make me a less ideal target for unsavory crimes and all these benefits would make me more confident, less afraid and more safe.
-Fourth brilliant thing I did - I took more chances and with the help of my fellow Narcoleptic friend, I started participating in life again. Yeah, it meant I cataplexied in public a bunch of times, yeah it led to unnecessary ER trips and some seriously humiliating moments, but with the help of my friend I learned to just accept it and not freak out fearing it would happen nor lock myself at home in humiliation. If I didn't start taking more risks then I wouldn't have learned all the little tricks I'm learning.... for example: like how to never fall out of a chair- I wear a small backpack all the time and slide the bulk of it over the back of the chair so the shoulder straps keep me from sliding forward and onto the floor if a sleep attack or cataplexy sneaks up on me! Also - How to avoid some predictable emotional cataplexies - I avoid eye contact when someone is making me very angry or super happy, and I don't listen to music anymore unless I'm already lying down and prepared to sleep because music can trigger certain happy or sad memories that can be bring up cataplexy trigger emotions. Also - How to stop feeling badly about canceling plans for an activity... from now on I always tell people all plans are contingent on if I feel up to it. I make sure they and I understand it's not personal and I'm not flakey I just happen to have a medical condition that is not conducive to making future plans because I never know if I'll be too tired that day or if the weather will be too problematic for me. Also, how to stop feeling like I'm wasting away the day sleeping - for me the answer was instituting a new rule for myself: "Do something everyday and talk to someone everyday!" It doesn't matter what,(and taking a shower or changing PJs or logging into Facebook doesn't count!) I have to do something, a 5 min walk, a load of laundry, go to a play, draw something, write a letter and physically put it in the mail box, wash the dog, whatever.... as long as it's something. And as for talking to someone, that's crucial for me because I easily get blue and isolate myself, so even if it means a torturous call the my grandmother or an ex, I can't let a single day go by where I don't talk to anyone even if I'm not in the mood to talk. Do something and talk to someone everyday is my own prescription for myself to help keep my Narcolepsy and Cataplexy from becoming a depressed lonely little lump in the bed.
-Fifth brilliant thing I did - I cataplexied in front of my doctor. Seriously, why did I always struggle to make sure I was alert and rested for my appointments before? You know what, when I went back to my regular doctor, told him all I had been through over the months, showed him the Narcolepsy network materials and the Xyrem medication guide and told him I wanted to try the medication but I knew he'd have concerns but that's okay I had a back up plan, I gave him the medical form the assistance dog place needed him to sign, and I reminded him of my recent times I awoke to being treated by EMS,........... and then he saw what cataplexy looked like for himself, - how unfakable, awkward, inconvenient for his staff and myself, and how blatantly dangerous it etc.... then there was no question.... seriously once anyone sees someone cataplexy they stop BSing an instantly understand how serious a problem it is to live with this condition... my doctor's response was "oh yeah, you have Narcolepsy with Cataplexy alright, let's get you that prescription, I'll read the pamphlet today, call the company tomorrow and I'll sign whatever form you want".
I assumed I'd have to pay out of pocket to get the script because I didn't have the perfect MSLT results and so on, but I thought "who cares, let me at least just find out if this would even work for me before wigging out over insurance issues and so on because if taking care of my Narcolepsy and Cataplexy is my #1 priority then I am willing to try anything for a month if it might help, even if it means hardcore poverty for a while!" Xyrem costs about $2,500 a month which is $42K a year, and everyone I've talked to and read about has said their insurance company made a huge stink and they had to wait for this and that doctor to sent countless letters and forms, etc..... all this time I had allowed neurologists to direct my care by what they assumed my health insurance company wanted... well guess what... my health insurance company agreed to cover the cost the first time asked.... all this time, all these months, all these tests and doctors..... what a waste of time because it turns out there was no battle to prove a diagnosis!
-The sixth brilliant idea I had was to wear better medical ID jewelry. I think when you have good clear medical ID info on, you feel and are safer. There's lots of pretty stuff out there but honestly when you need jewelry to speak on your behalf, pretty gets in the way. Eye catching obvious medical looking medical IDs just work better. http://www.stickyj.com/ has a wide selection of stuff you can engrave and I like the items I have gotten from them (BTW if it doesn't have a RED medical insignia, people probably won't notice it in an emergency), but the less attractive simple items I got from roadID.com work best because instead of engraved, the words are in black easy to read ink, and their items are pretty hard to break.
I have a dog tag on my bag I carry with me at all times that reads on one side "I have NARCOLEPSY with CATAPLEXY. Unless injured I require no urgent medical care. Info in wallet." and on the other side it reads: "I sometimes may appear to faint but I'm awake yet unable to respond or move for several minutes." If I'm about cataplexy or have a sleep attack I try and grab it or point to it. I also have a bracelet that says my name, my food allergies, and that I have Narcolepsy and Cataplexy and that more info is in my wallet. In my wallet I have the info card NarcolepsyNetwork sent me when I joined, as well as a whole little info card I made explaining my condition and what to do that helps and what not to do that doesn't etc. On my dogs collars I have collar IDs that say "My owner has Narcolepsy with Cataplexy. If I am found unattended then she likely had collapsed near by. Her medical info is in her wallet." And then it gives my number. (Because I cataplexy in public most often when walking my dogs.)
-The seventh brilliant idea I had was to make up a flyer for my local ambulance station. It explains what Narcolepsy and Cataplexy are, what it looks like, what to do, etc. and it mentions how their ability to calm people down, make the situation less humiliating, don't rush me to the ER if they don't have to, give me a few minutes and I likely will come out of it on my own, that way they save time, I save money and save face, and I feel less terrified of them being called thereby making me less scared to leave the house. Win-win!
Well, not only did the EMS appreciate the flyer, they made copies and gave it out to their whole staff, and said they really like learning more about this unusual condition, they are grateful for the heads up because it's also scary for them when they are stressing to ID what's wrong and how to save unconscious people with no obvious injury. We have an understanding between us, they know I don't want to go to the hospital if it can be avoided and they'll give me as much time to wake as they can provided they aren't super busy and depending on where I am. If I collapse in front of a huge crowd then they have to take me to the ER because otherwise they look bad and it holds up traffic, etc. If I collapse on a slow day near my house, they'll call a friend and help bring me in the house as long as my vitals are fine and I show some sign that I'm coming out of it. I think that's more then fair.
They have even helped me come up with solutions for random cataplexy problems..... like how and where I should go to watch fireworks without causing a fuss, etc. And when I cataplexied outside in a thunderstorm they knew exactly how to help me and how to express my needs to others on my behalf. They also offered to flag my house in their computer so that if there's an emergency they can know to send someone to my residence to personally check on me because I may be unable to help myself. I think the lesson here is that there are lots of people out there that you don't even know who will help you if you just ask.
Anyways, this is perhaps the longest post I've ever done but I just had so much to share and I really wanted to include everything because maybe it could help someone else out there who might be stuck where I was..... waiting and suffering and begging for an official diagnosis so I could begin tackling this disorder and getting more of the enjoyable and important parts of my life back. As you have read above, most of the things and the most important things I did that transitioned me from waiting to be officially diagnosed to getting proper care for m and my condition.... were things I did for myself, not things I waited to receive from some doctor's office. Being a patient sucks! Being a patient with a list of symptoms and no perfect diagnosis is the pits! no one seems to know what to do with you other than schedule to see you again in the future or send you elsewhere. Office's often give you no info on what you can do in the mean time or what your goals are medically and what you can do to help yourself figure out what you need and how you'll get it. But just because you don't know for sure what is causing your symptoms or you haven't proven your symptoms to a doctor yet, doesn't mean you can't start focusing on doing things to provide for your proper care whatever your medical problem is. So if your life has stopped and you are listening to some doctor tell you to wait a few months for this appointment or that test, just know, you don't have to wait... there are so many things you can do right this minute that can change how this condition impacts you and others. Make a wish list of dream accommodations that would make living with your condition easier and then start finding your own way to get what you need. Think about it, if taking the best care possible of yourself was your #1 goal in life, what things would you do, and how much more capable would you be at doing all the others things in your life that are important?
My symptoms have not yet stabilized, but I'm getting better at living with this every day. I'm still fearful, embarrassed, angry, and lonely, BUT none of it as much so as I was before I took charge. I am becoming freer, happier, and finding more ways of being able to do things. I'm helping myself understand and accept my condition and helping the people around me understand this better too, because I can't expect other people to accept a condition I myself am denying. If I neglect myself then how can I expect others to do any better? Most of the things my condition needs, don't come in a medicine bottle and it's my job to figure out those needs and come up with different ways of getting those needs met so I can be happier, safer, healthier, and do the things that are important.
Posted 13 August 2011 - 10:24 PM
It's encouraging to read these posts and helpful to learn what we can do instead of just waiting...and waiting...
Posted 14 August 2011 - 09:32 AM
Posted 26 August 2011 - 10:08 PM
I can understand and relate with oh so much of what you wrote. I am at the part of trying to meet other PWN and C. I have been isolated and so desperate for some understanding, that I'm trying to start a support group here in FL!
My Dr. told me that taking care of myself was my job now. A large part of my identity was work. I've learned that that's not true, that's not who I am, it's just what I did. That whole 'used to' loop has been ongoing far too long for me. I can treat myself well and do the grieving process and go on. Who am I now is what I'm finding out (and it's a little scary in this area). I tell myself that it's okay to be me and I don't need anyone else' s approval! Now.. to be able to just say it aloud to someone loll:D
Posted 08 December 2011 - 10:21 PM
Again, I appreciate your openness for the sake of others.
Posted 25 January 2012 - 08:26 PM
You give a whole new meaning to coping skills.
Posted 22 April 2013 - 06:19 PM