Posts Tagged ‘narcolepsy’

Today, I was confronted by someone I am living with who was upset over me having fruit in a plastic bag out. She began to recollect everything I am doing or rather have done that differs from other people in the house. She continuously repeated in a harsh and violent tone, “You’re not special”. I began to space out as she began to become monstrous as I do not care to hear from people that have nothing unintelligible to say.

Further, I began to think about why she continued to say this to me and what message she was attempting to convey. This is when it occurred to me; though I do not perceive myself as special, I do have special needs. There is a distinct difference. For me, those difference present themselves in the following ways:

  • I need more space in kitchen cabinets because the items I need for my motility disorder take up lots of space, and are very expensive. However, if the items are bought in bulk, the price is often quite lower. So, at the moment, I have many items from bulk shipments.
  • I take more time getting ready, and have to wake up earlier.
  • connecting this to an earlier post, I often am allowed additional baggage to lug aboard a plane. I don’t feel particularly special and rather isolated when I have to spend an additional 30 minutes to one hour waiting in airport security lugging a piece of baggage that is generally quite heavy, full of liquids because I can’t walk into a convenience or grocery store whenever I’m feeling hungry to be satiated. These items are not carried in your everyday store.
  • I have to be very wary that the food I grind is pureed to be of a particular consistency so I can swallow easier. Preparing food to this standard takes at least two to three times as long as an average meal preparation.
  • I have to drink out of a very particular cup with a straw, and these cups are generally made for people aged 1-3 years old. Oh how I love carrying around a cup that is targeted to this age group. If I want to be identified, a bright green cup is sure the way to go. I hate this fact, and often don’t consume any liquids while I am in public view to ward off any chastising before it starts.
  • When I go places with friends, it isn’t uncommon for me to be left behind so they can do what they need to do in a set time frame-I walk too slowly for them. Once this occurs in a friendship, aside from a truly valid reason, I often do not consider most of these individuals friends thereafter.

Someone who is special tends to believe that others should conform to his or her own standards and often exhibits a sense of entitlement. Upon deviance from this standard, a monstrous attitude is generally displayed by the special individual. If one accepts this definition to be generally accurate, I believe I was the product of the good old defense mechanism of projection hours ago; this person’s hostility towards me is because she believes she deserves the same treatment as me. You know what? If I had the ability to generate Cerebral Palsy, an unknown motility disorder, narcolepsy, ADHD, bilateral exotropia, and a slew of other conditions upon her for one day, I’d be confounded if she didn’t request to have a few additional accommodations made for her in housing.

However, since I do not have that power (yet), and I would not knowingly cast sickness to someone else, I hereby declare that the world exudes greater understanding and empathy towards special needs, rather than look upon it as an unthinkable act, and admonishing circumstance.

Today was a rough day. I went to the sleep doctor after waiting five weeks for the appointment, thank you Socialist medicine in a democratic nation= um 1+1 does not equal 2.

I was stressed arriving at the appointment as I had given myself what I thought to be plenty of time, silly me and forgetting about LA traffic.

Some would consider my driving wreck-less; one individual even called me an idiot as I made a bad ass move. There is a distinct difference between close calls because you’re an awesome driver who has driven all sorts of vehicles including ambulances and just being a shitty, careless driver.

At the appointment, the doctor continued to inform me that he is baffled about my case. The doctor provided me with a special device (actigraph) to wear all the time for the next two weeks to track my circadian rhythm.

He spoke to my individual therapist while I was in his office. She informed him that she too was uncertain how much was my eating disorder and how much was chronic sleep problems. Interestingly enough, she told him that I have anorexia. I don’t get it; my BMI is far too high (meaning greater than 18) to carry a diagnosis of anorexia.

 I am supposed to return to his office on the 5th of August for an appointment, and possibly sooner to return the device (in two, maybe one week).
 He seems to believe that I should integrate CBT-I into my routine (Cognitive Behavioral Therapy specific to Insomnia). Part of this includes not going into bed until I am extremely tired and ready to sleep. 

Additionally, he seems on board for minimally invasive procedures including somatic and was also wavering between the following:

 1. For me to potentially meet with his supervisor. Kaiser has apparently never ordered a cerebrospinal fluid (spinal tap) test in the sleep clinic and he’s strongly considering that to rule out narcolepsy. It gets sent to Stanford to test for a particular subtype. 

2. He is still considering Xyrem; he would admit me to the medical hospital to track respiratory status. Though it’s a strong medicine, it has saved people’s lives consolidating sleep. He said even five hours of consolidated sleep is good, which I don’t maintain at present. I mentioned Denmark and how I’ll be abroad there in one month for the following four months. He said the test could be postponed until my return from there. 

 For the next few weeks he wants me on as minimal meds as possible so poly-pharmacy doesn’t become a distraction. I’m continuing on the Nuvigil, Intuniv and Synthroid and supposed to mention to staff psychiatrist to not touch anything regarding sleep.

Initially he was wanting to integrate heavily caffeinated (military-grade) gum into my daily routine (as caffeine tires me because of ADHD. Again, he didn’t want to pursue that route at present because of poly pharmacy.

Following my appointment with him that was longer than one hour and I had waited nerly one hour to see him, I knew I wasn’t going to make it to the recovery meeting at the eating disorder facility; today’s meeting happens to be run by my favorite therapist. Oh well, missed the boat on that one. 

Next, it was off to my newly acquired somatic therapist. I arrived later than I anticipated; she was ok with it as I provided her with advanced notice of my potential delays. Upon entering her office, I was activated to say the least. She didn’t touch me at all last week, it was the first session and she didn’t want to re-traumatize my system.

This week, I was anxious for her to touch me as I heard that is how she practices. I was also extremely nervous. Since my sleeping issues have been weighing heavily on my system, I decided that it would be of great benefit to be touched today as it is supposed to bring about a sense of calm, and often people nap after session. My therapist at the eating disorder center believes somatic therapy will be of great healing for me, releasing the toxins that are pent up within my body.

She didn’t touch me for a while and when she did, I felt this energy radiate throughout my body, and it was as though a radiant light was shining distally to the front of my torso. It felt exhilarating and mysterious and unsettling all at once. I barely made eye contact with her. I couldn’t it was uncomfortable enough to be laying down in front of a therapist.

She guided her hand slowly to my kidney and mentioned it was quivering (common). She slowly earned my body’s trust and began moving it around my kidney, creating a surge of power each time she made motion with her hand. When the motion ceased, I numbed out. I was on the brink of tears until I heard session was about to come to a close. She comforted me saying I could check in with her throughout the week via text, saying something to the effect of “Are you there?” She’ll model a positive relationship for me and I appreciate that, it makes sense. I sure hope I get to sleep now.

After session, I was planning on heading to the ocean to restore my sense of calmness. The removal of the somatic therapist’s hand was just as unsettling as the initial placement. I was going to restore my spirit by heading to the ocean and then a meditative yoga class. I was debating between eating dinner and not. I was more on the brink of restricting and limiting my intake when I was on an elevator ride with a man and his young son.

The son was thrilled at the glass elevator we were riding in. The dad said, “Should we ride on here forever?… Or should we eat?” The boy, baffled, uttered, “Oh no, because then the batteries will go out.” Good point little dude, a good reminder that eating is a battery refuel. No batteries out tonight. I trekked back to the house whereupon I cooked a rather late dinner. I had a bit of a snack after that, also late.

And with that, I bid you all adieu.

Thank you for taking the time to read this blog, and remember:

If you need a pep talk, check this awesome kiddo out:

Why can’t I sleep? Many reasons, many distinct circumstances that when I think about, I write off as no big deal. I’m starting to think they are a big deal.

Tonight I was told to go to bed and when I asked if she had spoke. To the supervisor, she didn’t care, she didn’t want to hear me say no again, don’t say no to her, don’t tell her no again. I didn’t want to be silent about my issues. She goes on to say she’s there for support. Maybe the support I require is that of having a compassionate human being (put in a job to do just that) next to me, physical presence.

How the fuck are you going to say that and tell me I need to leave and go to bed, specifically when I’m telling you that doesn’t work for me? I can’t go to bed until I’m dead tired or I cry and cry and cry. Falling asleep crying is not a fun way to fall asleep, perhaps it’s be worst way.

Memories of being unable to be consoled come up with this incident. Memories of people not giving a shit, not being able to comfort me in the literal dark places of the night. My mind has been in dark places during these dark times and yet is all lit up, on fire. Tonight rather than allowing me to do things on my own timeline, I got more heated with this discussion, more awake than I was two hours ago. More reminders of why night sucks.

People aren’t there for me when I need them to be. I understand they can’t be particularly in the wee hours of the morning. Except I can’t be here for me either. The night is a dim lonely place and I envy those who use sleep as a safe haven, an escape. Sleep has never been that for me. So even getting the assistant supervisor on the phone doesn’t help even though I thought I knew her, I thought she understood me. I thought wrong. It’s not funny and there’s no need for be house mom and her to laugh at me or my situation. I wish it were as simple as laying down and going to sleep.

It’s never been like that for as long as I recall. Instead of helping me get through the dark times, people have locked me into my own room, placed locks on all doors except mine. Shoved me into my room. I remember insomnia setting in when I was three. I remember always being told to go bad to sleep, rarely if ever consoled. I’m not strong enough at this moment in time to provide that consolation to myself. I need human compassion, not more neglect.

Today was another example of how my cognitive processes diminished. I meant to look both ways before crossing the street, and I forgot to until the last second. I was inches away from being struck. The other day I was nauseous all day long, sleep deprivation does that, it does a number on an individual. I don’t want to have a decreased brain volume, another common finding in insomniacs. Aren’t I lucky though, everyone’s experiment, the exception, primary narcolepsy AND primary insomnia, go figure. All I ever wanted was a primary caregiver. I know eventually I have to turn to myself for that… tonight or this morning is not the time.

My Body is Falling Apart on Me… or, am I falling apart on my body?

Posted: 20 J0000005UTC 2011 in Education, Entertaining, Health, medication, Update
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interactive symptom checker

I think if I used one of these interactive devices, I’d overload the system.

As mentioned in previous times, I have quite a few afflictions. I’m always fascinated by the medical professionals who look at the piece of paper (containing medical history first) and then at the patient. If you were to “see me on paper”, I look like I’m dying, or should be a 500 lb. couch potato (no offense to you “couchies”- made that one up on the spot. Clever, eh?).

We’ll start with physical diagnosis and work our way across the board to emotional and psychological diagnoses (current and past included, you’ll see):

Cerebral Palsy-got that one at birth, lovely umbrella diagnosis. If only it covered or explained all of my ailments

Jaundice-birth, but after bright lights blinding me, good to go after a few days

Hyaline Membrane Disease (severe), also at birth, due to swallowing mother’s blood- ewww! No longer an issue, but am I now a vampire?

Not sure if this warrants its own line, oh well…. Multiple blood transfusions as a baby. Glad in this case to not be a Jehovah’s Witness (nothing against them, just might not be alive if I was one considering they don’t believe in receiving blood transfusions).

ADHD-definitely super duper severe (according to one dr., even with meds.) An acquaintance once said I was the poster child for this. Though I believe I have this, I wonder if the diagnosis is correct. The signs/symptoms didn’t appear until about 9.

Anemia-on and off since young adult-ish era

Poly Cystic Ovarian Syndrome/Disease-diagnosed at age 20, essentially reversed illness by age 24, doctor was surprised, but I got off of Glucophage (a medication for Diabetes as I was considered pre-diabetic)

Hypothyroidism-unsure if it was lithium-induced or biological in origin. Doctor never took a baseline level prior to initiating lithium therapy. First blood test showed poorly functioning thyroid levels. Have tried (with endocrinologist’s approval) to discontinue drug therapy. Unsuccessful with attempt, levels did not remain consistent off of medication.

Insomnia- this one can pretty much go back to as young as I can recall. Horrible sleeper as long as I can remember. This resulted in a diagnosis of

Narcolepsy- yep that’s right, I have clinical primary narcolepsy and primary insomnia. The doctor is mystified. Note, cataplexy though a hallmark sign of this disorder, not a necessity to make an established diagnosis. I do not have cataplexy just random falling asleep usually when under stress or extremely bored and unable to move.

Exploding Head Syndrome-yes, this is a real diagnosis as I have to explain to most healthcare professionals upon giving them my full health history. It’s just as it sounds; a large noise occurs in the head (not schizophrenia thank you) during the period between wakefulness and asleep. It is rare to happen more than a few time, rare to happen in females, non-smokers and usually only occurs in obese, over 50 years old populations. Well, I am female, under the age of 50, not a smoker, not obese and it’s happened countless time (more than 3 dozen)

PNES- also know as (Psychogenic) Non-Epileptic Seizures or NES. Traditionally, it was thought that these were “pseudo seizures”; until recently it was thought that the person was faking these seizures. It is not false advertising folks, it is an actual seizure without brain wave alteration. These seizures are brought on by stress as the name indicates.

Borderline Personality Disorder-if you have read any of my previous blogs, you’ll see where this one stems from with a heavy history of abuse and neglect.

Situational Depression- Sometimes I think I’m lucky for it to be merely situational. At other times, I am considerably frustrated because there is not a medication which alleviates situational depression and I often run into situations which trigger it, alas, it is a constant on/off battle with my brain.

EDNOS- Eating Disorder Not Otherwise Specified- I alternate between periods of Bulimia and Anorexia, and ordered-eating, so I get this essentially throwaway diagnosis.

OCD- I used to believe that I had the rarest diseases. My doctor even said to me, “most people come here thinking they have cancer, or AIDS and you present with this (Hanta virus)? I mean it makes sense considering my family’s medical history and my personal medical history that I should be concerned about having the rarest of diseases, right? Fortunately, I went on a awesome medication at age 15 and discontinued it at age 18. I was essentially symptom-free. Sure, here and there I have medical student syndrome, but as for all of the diagnoses I’m listing, these have been established by medical doctors or professionals.

Seasonal allergies and allergies to half of the world-trees and grass for seasonal, mold (all year-round) mild allergies to Cantaloupe, Honeydew, Coconut (in excess of a small amount), Kiwi (in excess of a small portion), Mango, Pineapple, Walnuts, Pecans, Macadamia Nuts, Chestnuts. There’s probably even more than that, I just don’t always recall it in full detail. I do however know what I’m allergic to if I were to come across it.

Urticaria, unknown etiology surprise surprise. If I’m stressed and don’t react with either eczema, a stress seizure, dissociation, surely something will appear. I’ll guess this is the etiology for the hives.

Paralyzed vocal cords-for nearly one and a half years, I didn’t have a voice. Initial speculation was cancer, followed by unknown (for most doctors), followed by overuse, stress, hiatal hernia. The whole time I presented to the doctors that it may be attributed to mold toxicity being that I tested positive for three types of mold in my system. Each physician shooed that diagnosis away aside from the non-traditional physician who initially mentioned and tested me for it. Unfortunately, he was 3.5 hours away from where I was living at the time, and I only had one day off per week, spending it going to doctors a bit closer, and occasionally relaxing. The voice came back after leaving the moldy environment and then disappeared again when I returned to an excessively humid, and therefore moldy environment, complete with breathing challenges.

Hiatal Hernia-one day my stomach felt weird, I went to an urgent care, and was referred to a GI doc. I had an endoscopy where they biopsied a part of my esophagus and this lovely diagnosis was made.

Nasal Fibroma- removed when I was 18. Removal lead to site infection which spread and led me to stage 4 antibiotics, the summer before I was set to begin college. My freshman orientation was a blur to me as I was still recovering from the infection and doped up on pain pills. Great way to end high school and start post-secondary education.

Thornwalt cyst-yeah I think I still have this one, no need for removal though as it’s not causing any signs/symptoms that I’m aware of.

Scotopic Sensitivity- sensitivity for me includes to light, and certain colors. It’s a perception disorder. Irlen Lenses can help

Speaking of perception disorders, I probably have Sensory Integration Disorder. That’s not diagnosed though believe it or not. There’s a time and place to see a doctor for things, particularly when it is necessitated. I have gone to far too many doctors offices and spewed out my history. As I’ve conveyed, on paper it looks like I’m dying, so I try to avoid stepping foot into a doctor’s office unless I have to, or because I’m observing a super awesome surgery (as I did a few weeks ago). Plus, our healthcare system does not make things financially feasible to go for any condition, never mind the significant ones.

xxx (Ken’s partner at the moment) has unofficially diagnosed me with Aspergers syndrome. I don’t take to heart what she says, even if she is a physician because she’s full of issues herself, namely an untreated personality disorder.

As a child, I had processing disorders, namely auditory processing and reading comprehension challenges. These can be referred to as learning differences or learning disabilities. Semantics.

Well, that about sums it up for now. I assure you, that if I think of any more or I receive additional diagnosis, it will be posted on this here lovely page in due time.

Thank you as always, for choosing to use your limited time to read this blog!

 

Image

See, told ya.

You know back in the day, bartering was the currency? A shell for example was the equivalent of the stupid paper money we have now. If only I could pay for things with shells. If only money weren’t such a burden on my everyday life.

I have shells. I have tons of mostly useless items. I got attached to these items as a kid, rarely let things go, essentially, became a hoarder. You know why? Because objects are always there for me, people rarely. So I held on to something tangible like a rock collection, because at least it usually conjured up a positive memory.

Now I’m broke. I’ve been broke since last year. I worked my ass off to save for school to have the least amount of debt possible. Then, my family turned its back on me, almost entirely, and all of my money went into health care expenses, necessary medication that costs $750/month. Fuck you America and your torched health care system. You’re not repairing it fast enough for being a developed nation. All because my doctors never gave me the appropriate test which provides evidence that I have narcolepsy until 3 and a half years after onset of symptoms.

I’m trying to get the money back that was spent on the medication. Correction, Ken (who I inherited 23 chromosomes from) and is a lawyer and extremely wealthy has been working on this. Problem is, he doesn’t know what it’s like to be broke, to go week to week unsure if there’s enough money to put gas in the tank to get to a doctor appointment.

I sell items on Amazon to try to get some money. My items I’m so attached to, the one thing that was consistent in my life, and slowly, those  items are slipping away.

I called Ken this morning to see if he filed my taxes.

Three weeks ago, he demanded he’d do them after I called him from the tax office asking if I could have some money to file them. I told him I’d send them right away and explained how important it was that they be filed immediately. See, I wasn’t able to file them earlier because of my residency status for this state.

I wasn’t an official resident until the 24th of March. Being a resident entitles me to certain additional financial aid awards when completing the FAFSA, financial aid for higher education. When I called Ken this morning after trying to connect my IRS tax information to the FAFSA, I wasn’t able to do so. With this portion of my FAFSA incomplete, my school won’t even look at the application to award money to me, regardless of them knowing my situation.

Ken just filed my taxes last week. It takes 2-3 weeks to have the information electronically transferred. That amount of time hasn’t passed. When I called Ken to inquire as to his reasoning for not filing the taxes earlier, when he knew my situation, he became immediately defensive. I asked him if he was prepared to pay thousands of extra dollars ($15000 approx.) for my education next year. He said he’s not a bottomless pit of money (understood). He kept yelling at me, attempting to justify the delays.

It frustrates me when people lie. It’s really easy to understand if someone doesn’t have the means to pay for something, if truly broke. However, I know that Ken is far from broke and has never experienced what it’s like to be broke. His law firm was just voted in the top 20 in the nation for medium-sized firms. If you’re fresh out of law school and join that firm, you’ll make a comfortable $150K/year. He’s a partner in the firm. He makes bank, and for the amount of money he has, rarely spends it. So Ken, don’t fucking tell me you don’t have the money. Tell me you don’t want to finance the additional costs of my education, but don’t say you don’t have the money. Because you do, and I know you do. And I find it ridiculous how inconsistently financially supportive you are. I already know not to expect emotional support from you. I kind of reverted to calling you my banker. Now, you won’t even do that?

I don’t even blame Ken. I don’t blame the school, I blame the system. It shouldn’t be this challenging to get through school, to not even be certain that I can go next year because of financial constraints. I now have to put as many more items as I can find on Amazon to sell. I have to start selling things that aren’t rarely used, but often used.

I have been in and out of higher education for nine years. Nine years with two AA degrees. Those don’t facilitate career growth in today’s society. Even a Bachelor’s degree won’t do much. Problem is, I have to obtain a Bachelor’s prior to going further along. I’m so close, almost there. Yet, I’m afraid I won’t even finish a Bachelor’s now.

Fuck you system.


I can’t say why I feel how I do, completely disconnected, completely detached…

Surprisingly, nothing terribly significant has occurred lately. I briefly mentioned recently that the study abroad committee overturned their decision and are allowing me to pursue studies abroad this Fall in Denmark.

A health care panel which I organized without being asked to is taking place next week. My favorite doctor is attending and speaking at this, I have no excitement.

When talking with my advisor about my course selection and other opportunities this Fall she said if I could afford to do so, I should stay to visit medical schools abroad.

My response-,“I’ll talk with my banker.”

She gave me a puzzled look and then I said, “Oh yeah, my dad”.

She was like “Yeah I was thinking, dang, I wish I had a banker.”

I replied, “You have a dad though right?”

She nodded her head.

Before thinking, I replied, “…and he loves you right? He gives you emotional love.”

She nods, smirking a little (not in a sarcastic way) “Yes, he gives me emotional love, no money though.

So my life security pot is intermittently filled with monetary love and hers is emotional love.

We win some, we lose some. It’s really perspective and framing it into context. I would love to have a parent I could go to for any type of emotional support. That does not exist. I can’t even talk with my brother, for one because he’s hard of hearing, only getting worse. For two, he doesn’t consider me a part of the family.

Passover has officially concluded and I figured with my extremely limited vegan diet, the change to non-Passover food wouldn’t be drastic. Yeah, I was wrong, and I completely lose control anytime I’m around any type of vegan food. You want to tell me that this has nothing to do with being horribly neglected as a young child, unsure of when my next food would be? I go into survival mode with food and then absolutely regret it. All of my hard work down the drain. Yes, there can be fat vegans and I am an example of one of those. Granted, I’ve just begun the lifestyle, however I just keep stuffing my face over the past few days. And I’m not ok with that. I’m not ok with the numbers on the scale or the total loss of control. So, I did what makes the most sense to me, something I regret far less than overindulgence; the word starts with an “l” and ends with an “e”. It’s one of the tags to this post if you still can’t get it.

I have constant word recall challenges. I’m not depressed. I’m distant, disconnected, numb. Another way this disconnect is apparent is by my absolute lack of consideration for myself in terms of divulging anything relatively pertinent to a conversation. I’ve told many people multiple aspects of my life I’d usually keep to myself.

I was reading that this could be attributed to narcoleptic symptoms, a problem deciphering reality from dream. Well, I do think I know where that differentiation occurs, and yet I still don’t feel right. I don’t consider myself a danger to myself of others, just lack emotions of any sort.

I’m estranged from all the world, myself included.