Posts Tagged ‘surgery’

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Starting out three months too soon,

He didn’t make it.

My twin was too little,

I took the nutrition,

This you’ll hear, is my rendition.

Left alone, parents aside.

Only touched out of necessity,

Rarely for love comfort,each time much brevity.

Fed through my head because I couldn’t feed.

A little weird, I think, because apparently I managed my needs:

In the womb, next to my brother,

The moment we’re out I don’t get another

Moment near him as they swooped him away,

Or fell into the bucket, there’s none who will say.

None who can or will tell me the truth as I stare off into space,

Appearing aloof.

Bitterness abounds as my family breaks apart.

It was at my birth, at my start.

Sure there were problems and problems before,

I can’t help but think I added to the stress more.

Regardless, I was an innocent life,

Quite fragile, delicate, and constantly under the knife.

They thought I was stupid, young, naive.

I knew what was going on, always protecting my reality,

Not wanting to believe,

That my parents couldn’t love me,

That they constantly grieve,

The three children they had

1 dead

1 dying

and the last, keeps trying.

That’s me, the last, a bundle of unknowns,

I stepped away to grow up on my own.

From a very young age I never connected,

They blamed birth, the brain bleed, always something indirect.

They never stepped up, they never confessed,

That all this, all this came from distress.

If they were dead, this life might make sense.

At the very least, I would have evidence, and my world not as dense.

I despise them, I pity them,

For parents they are not.

I used to want to leave, ran away a lot.

No one helped me as I sat in despair.

I was the crazy one, life perfectly unfair.

I was judged, ridiculed, abused all the time,

When I asked for help and spoke the truth, it was as if I did the crime.

I didn’t, I was just a little kid,

Shouldn’t have to take care of myself,

Yet I did.

This pattern created a grown up too soon,

From the age of 6 I was off, zoom zoom.

I began to rebel, only from them,

I began to stay away, always sent to my room.

The monster within me wouldn’t leave,

As I destroyed my things, myself, all in a vain attempt to grieve.

For not having a mommy to cuddle with when I was upset,

Not having a daddy as he was filled with his own, deep-seated regret.

I did have Barbara, emotionally and completely destroyed.

I did have Ken, an unstable adult child, who I sometimes enjoyed.

Then there’s Michael, who never really liked me,

He noted this before and to the police I was crazy,

And last from my childhood was Judi, far from a lady.

I yearned to connect, to please have a family,

No, not for me,

That would be uncanny.

As my world unraveled, I followed suit,

How did I not die on this treacherous pursuit?

I was done, ready to die,

What kind of life is this, all alone, with no one nearby.

Somehow I’ve lived, they call it fortuitous,

They call it a miracle, they call it bliss.

I don’t know what to say,

I just don’t want to struggle, through this, day after day.

I want to live, to stay alive,

Yet there’s uncertainty and death has been near,

The angels called for me, and I was like a deer,

Caught in the headlights, unsure how to proceed,

As the angels waited nearby,

Would I concede?

I didn’t go, not wanting to die alone,

But I was ready, done with the drone,

Of being sick, unloved and unwanted,

The only hope I had left, slowly dissipating,

My life was on the edge as I was done fighting,

Too scared to die, too tired to live,

I drifted through the night, unable to give.

I woke in the morning, rather confused,

The medicine finally worked, I didn’t lose.

I was alive, albeit tired, weak and meek,

Wanting to finish school, week after week.

I loved where I lived, not wanting to leave,

Yet I had to, this time,

If I wanted to breathe.

Life is breath,

Breath is life,

I must remember this pattern to be rid of the strife.

I’m alive now, I’m writing this down,

Missing Denmark, my twin, and my upside-down frown.

I was happy there, though I was sick.

I had friends, ones I could pick.

I’m lost here, where I don’t belong,

I’ve nothing here, not even a mom.

I have me, only me, someone I despise,

Who stole from a baby, ripped apart a family,

All by being alive.

 

 

 

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You twisted fucks. You attempted to raise my guilt levels and ultimately succeeded in doing so. I was about to utilize my travel break to travel to a nine hour time zone difference and back within four days to visit my “ailing brother”. I don’t know how ailing you can be when you continue to compose jackass e-mail messages from your bedside.

I’m fucking sick and tired of being everyone’s punching bag. Enough is enough. Don’t just contact me when you need to blow a load and transfer your insanity to me. I’m fucking done with you bastards, you good-for-nothing imbeciles. Leave me alone you crazed bullies. Don’t attempt to twist my fate and my reality yet again.

You ill people continue to use me as the scapegoat so you don’t have to look at your own damn problems. Well it’s time you take a good hard look and stop fucking with my life. The moment I try to do as you say, to contact him, to communicate with him, you say, “Did you actually expect him to jump for joy when he finally heard from you?” Well maybe not jump, but judging from other people’s messages, I figured it would at least do some good.

I’m not going to sit around and pretend like nothing happened. I don’t care how sick someone is, no one and I mean no one has the right to be an evil pompous prick as he has been displaying. Fuck, I can’t even put into words how damn angry I am for falling for the trick, for allowing you to mess up my brain, yet again.

Family, what fucking family do I have? All this incident has shown me is how unhealthy and irrational all you people are and how honestly, I wish you were all dead.

It’d be a lot easier to justify not having a family if everyone was deceased. Instead, I get to look at reminders of how dysfunctional you all are and how you all hold Adam on a pedestal and how the crown prince of Neurofibromatosis Type II continues to be the diamond of everyone’s eye. I know you will likely never see his faults, and you will constantly put your hurts and fear and horrid feelings onto me. I am being who in your mind doesn’t matter and is so fucking ill. I went through unnecessary and dangerous testing because you believed I was at fault. I was sectioned off from society for years. And for what and why? Because you thick people can’t bear to think that you do anything wrong. It’s not all on me. I wish you’d show me the compassion and love I deserve. Since that won’t happen, I will continue to displace myself, and struggle on my own. Struggling on my own is better than being terrorized by you.

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!