Kids are Incredibly Wise

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:

I’m supposed to go to bed crying every night?

I sit in my bed, typing this, hearing my roommate’s phone constantly ding. This is not an environment conducive for sleep, it’s constantly jarring me more and more awake, and into the realm of insomnia.

I’m not ok with this. I want to not be my only consoler in life, I hate myself, I hate the person I am, the gender I’m not (I identify as neither gender. I am just a baby in an older person’s body, completely separated most of the time. I want someone to tell me it will be alright, because I don’t believe it is alright.

Why did I not receive the love and affection I craved and deserved as a child? I recognize myself as one of those dogs left out on the street without love from anyone else. Today was rough, the house mom from last night broke confidentiality rules this morning by telling other clients that she had a rough night with me and elaborated by conveying the whole story to people who do not need to be made aware of the situation. That is rude and distrusting and I do not respect her. Someone needs to have a stern talk with her and that someone should not be me. The house mom on tonight used to be cool, she’s not as awesome as I thought she’d be and she wants me to have respect for the house moms.

When I’m lied to, I will not pretend that I wasn’t and go about interacting in a non-nonchalant manner. Miss attitude needs a check of her own. That was yesterday though, and today, or this moment is a new piece in time, and with that I’m supposed to fall asleep crying like a baby, waiting for someone to come tell me it’s gonna be alright.

It’s Dark Out And my Brain is Lit Up

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.

Don’t tell me what to do, especially tonight

Don’t tell me to go to bed because:

1. You want to go to sleep

2. Knowing my sleep history, forcing bed upon me does not resonate well with me and my well-being

3. Knowing what happened the last time I went to bed before I was dead tired (meditated and continued having nightmare after nightmare until I was finally asleep. This makes me think that you want me to have another nightmare, and that you don’t truly care about my needs.

Tell me to go to bed and I assure you, you will have greater problems than you began with. Let me be, and no issues will occur. I hate the night, there’s no need for your attitude to make it any worse.

Not only are you trying to be in a position of authority over me when clearly you are threatened by my retorts, and consider them arguments, you try to listen to an incompetent individual in the house who at the moment is talking out loud to herself and smacking her lips intermittently singing some bs song in a smoker’s voice. I fucking swear, if you listen to her and don’t re-direct her shortly, then you have fallen even lower in my Respect Book, and I will have less and less for you.

Creating a rule that doesn’t exist and attempting to implement it on a whim doesn’t sit well with me. It insinuates that you are narcissistic and don’t actually think you need to work to have a paycheck.

It was already a rough day for me, figuring out a lot of new aspects which contribute to my disordered eating, no need to push my emotional boundaries right now thanks.

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

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!