Federal Disability + State Disability = Waiting Game

I am currently playing a waiting game. I really do not want to play, but now that I have done all the work, I have to wait. In the meantime I am pursuing means by which to make some cash. Have I found a one? Nope. Not at all. Waiting for California Disability benefits to be approved is totally not a joke.

Since I quit my job back in April, I have applied for both Federal and State disability benefits. I was denied already for Federal benefits back in August. Figures… I am still waiting to here back from the state. Surprisingly the Federal end of things went pretty quickly and I received responses rapidly from my representative. I really have not heard anything at all from the State of California on my Disability claim.

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I quickly gathered and organized all of my medical paperwork and hospitalization papers to hand over to the Social Security office in anticipation of them requesting them all from different physicians that I have seen since my seizures had started. I went to the office one weekday and drug a huge file box full of the organized documents with me to submit to my representative. The person in the office that assisted me immediately faxed them to my representative’s office in I believe Sacramento or someplace and I was done for the time being. The next step was having my most recent psychiatrist sign the documents about my current situation and how the seizures and my PTSD were affecting me daily and when I had been at work. I had to make an appointment with the physician the following month to sit down with her and have her evaluate me for all of that, which I complied with and went through with her quickly. Once that had been done, I also had to have a few family members submit documents stating that I was unable to handle having a day job due to the triggers that are there which can cause me to have seizures and panic attacks regularly as I had been having at my most recent place of employment. All-in-all the process went rather smoothly and I submitted my documents in a timely fashion to the Social Security department.

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However, when it came down to the California State Disability Insurance Department, I submitted my application to file for benefits at the exact same time on May 3, 2016 and have yet to be reached out to for any type of documentation. On the website where I submitted my application for benefits, all I see in the current status for my Pending Disability Insurance Claim Application when I login is “Pending medical provider form”. What this is sure to mean from what I have found online from other people having this same thing show up when they look at the status of their claim is that the physician has not received the forms or filled them out and submitted them, or the EDD has not received them or processed them as of yet. I have decided at this time to go to the Disability Office in Santa Ana, CA and find out for myself exactly what is going on. I have read online that similar people in my situation that have the same pending status have done this and gotten some sort of result from having gone to the office in person. This is mostly due to the fact that it is literally impossible to get anyone on the phone to assist you because the phone lines for the California EDD are always busy. Like, 24/7. I have called and called and I get the same message each time I call saying the following: “I’m sorry, we have reached the maximum amount of callers” which is complete bullshit.

I found that this blog called Corner of the Mind explained how she was able to go in to the EDD Disability office and found that when she was there, the person assisting her “…looked somewhere else in her computer and apologized – they did have the form.  Whew!  Then she said “oh my god” and shook her head.  She looked at me – “he didn’t sign the form.””. This made me come to the conclusion that I might be able to get a better answer than what the SDI Online website is giving me with that “Pending medical provider form” nonsense.

All I need is to gain some information for right now. While I wait though, I am looking for ways to make some money. If anyone has any bright ideas, I am all ears!

 

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I Now Consider Myself A Person With A Disability

Since my seizures began, I had heard from multiple people in my life that I should pursue being on disability. This was not something I could consider in my mind. As far as I knew, I was a able-bodied person who was able to work a 9-to-5 job like most people I knew in the work force. However, as the years have gone on since I began having seizures and have tried as best as I could to make things work within the positions I have held in that time, I have come to the realization that I am unable to perform like my coworkers were able to. I struggled. I knew something was wrong when I was in the Emergency Room twice in the end of 2014 and the beginning of the year in 2015 and was unable to return to work until I was once again “stable” and able to be in the workplace. So over this last year I made some decisions and came to the conclusion that I now consider myself to be a person with a disability.

My mental health conditions had caused much damage in my life towards the end of 2014. I was at the point where I had begun a working at a new job and was beginning to have problems while at work and in the waking hours of my days. I was hearing voices and hallucinating things that were not there. I was crying uncontrollably for no reason whatsoever. This was only the beginning.

With my new job, I had new medical benefits with Kaiser and so I took it upon myself to start seeing doctors to pursue a second opinion. My employer at the time was very concerned for my well being and was also very encouraging to find out what more I could do about my seizures seeing as I was struggling so with them. I started with my new primary physician and went from there to see a new psychiatrist where I was prescribed my very first depression medication along with an anti-psychotic drug. She told me that I was not schizophrenic as I had thought, but the visions I was seeing were coming from my severe chronic depression. I began taking the medication in hopes that it would all make things better. And so I started falling asleep at my desk while at work and was forced to drink things that would energize me which I had never had to do before in my life.

Things worsened with me and the amount of seizures increased and the symptoms got stranger. One night while alone in my bedroom, I had a terrible seizure which lead me to screaming and “speaking in tongues” or “talking in gibberish” as my family described it. They took me to the ER at once where they pumped me full of Ativan and sent me home once I was subdued. From that point I was taken off of the antipsychotic medication and my condition improved a bit and the hallucinations stopped and their were no voices in my head anymore. Oh and did I mention my neurologist signed a paper stating that I was to not drive anymore? I lost the ability to get to work as well, and so I had to rely on family until I was approved to gain transportation through OCTA Access. This is a wonderful program by the way!

Next thing I knew, I was headed in a downward spiral of sadness and I broke down in front of my shrink. I was delirious and inconsolable. She notified my work that I was to be put on immediate leave for the next few weeks and be put on disability benefits while she enrolled me in what they called “Intensive Outpatient Program” or “I.O.P.”. This program was meant to give me the tools to cope with my depression. The thing was, I had been in therapy before and had tried many of these things in the past. Upon speaking to the group’s leader, I found that I would not get the individual help I needed with my issues and my PTSD which I believe was causing my current meltdown. Go figure!

The weeks went by and though the group therapy was good for me, it wasn’t what I needed. I had to go back to work, or lose my job. Next thing I knew, I was working on a very tough new program at work and trying to get things back to normal at work when I had a bad seizure at work. One of my sisters had to come and get me because I was unable to be calm and was a jittery mess. She took me to the ER where they started running tests on me as I had another seizure in the car on the way there and then AGAIN while sitting in the intake chair speaking to the nurse about why I was there that day. They drugged me yet again to calm my nerves and body and I slept. Apparently I was there for about 10 hours and when I awoke they informed me that everything came back negative and re-diagnosed me with Conversion Disorder which is basic Hysteria.

Yet again I was at a loss. I had an answer which did not help my situation. When I followed up with my shrink, she told me to just continue on with the medications I was on and to see my therapist regularly. Oh, and they increased my depression medication to the maximum dose naturally.

Next thing I know, I am being let go at work just after accusing my coworker of harassment in the workplace. Great.

I decided then to take the summer to help out some family in Florida and be a caregiver for my elders for a while. Being stress free and out of work, I only had a few small seizures while away from home. A miracle? I think NOT. I was out of the stressful environment of being in a normal workplace. I was able to relax and do things at my pace. Or at my elders’ pace at least. haha

Upon returning home, I began looking for work seeing as my unemployment had run out. I got a job after 2 weeks of searching and got to it! Yet again, I was down. I was depressed and stressed and having panic attacks and seizures all over the place. What was I to do? I sought therapy once again through MediCal. I did the right thing. I found my current therapist who began working away with me on my PTSD and doing EMDR sessions with me. Eye Movement Desensitization and Reprocessing (EMDR) therapy is an integrative psychotherapy approach that has been extensively researched and proven effective for the treatment of trauma. EMDR is a set of standardized protocols that incorporates elements from many different treatment approaches. To date, EMDR therapy has helped millions of people of all ages relieve many types of psychological stress.

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Through these sessions with lights and memories being processed together, I was able to go ahead and finally deal with my past abuses and face up to the fact that I am alive and well and able to live.

Sadly, this did not stop my seizures from occurring, nor did it stop me from having panic attacks in the workplace. Thus in April of this year, I quit my job and began filing for disability benefits. I have found that over the last few years, I just have not been able to perform very well at any job that I have held due to what is going on with me. The seizures, the panic attacks, and much more… It is all so difficult to handle when I am expected to be present at work for 40 hours a week and be high functioning at that. I have tried so very hard to do everything in my power to keep up my spirits and be the best worker I can be, but their has finally come a time when I know in my heart and mind and my body that I just cannot do things like some others out there can.

I am waiting now. I have been waiting since May for an answer. I can only hope that I will be approved for the benefits that I am in such need of at this point in my life. Family in my life has been extremely supportive of my decision, as have friends and my significant other as well. I am so very grateful to them all. The only support I am in need of now is from the government. My hopes are high, and my medications are increased as my anxieties are amped up like never before.

Now, I wait.

Battle Scars Across My Shoulders

As a teen, I had acne. NO SHIT. Almost all teens get acne.

Having said that, I will let you guys know immediately that I will NOT be posting any photos on this post of acne. Yay! You’re saved from that nasty hormonal grossness that most of us have been through! So anyways, I had acne. BAD. I had it all over my poor reddened, pimple covered face. Also, I had acne on my shoulders and back. I had zits here and there and everywhere as most teens do. What I also had though, was something that is called Keloid Scars. A keloids is a growth of extra scar tissue where the skin has healed after an injury. This problem is more common in people ages 10 to 20, and in African Americans, Asians, and Hispanics. Keloids also often run in families. So basically on top of your scar, is another, puffy, welt looking scar, resembling a burn scar. Lucky me right? How did all this come about? Well it started with the acne naturally and then just turned ugly and permanently left me with little reminders all over my shoulders and back. Thankfully though, my face was left wonderfully clear! I have a story to tell, and it won’t be pretty, so here is my warning now, if you get squeamish like I do, leave now please to save your stomach the pain of having to endure this puberty-rich story, and I plan on using my most gruesome terms in my vocabulary of course.

So you know, around the age of 10 or 11 it started. The tell-tale little nasty pustules began appearing. I would scrub my face and put makeup over the things, but their was no stopping them. No matter what I tried to rid myself of them, nothing helped. And then…my mom caught me trying to hide something one day as I was walking wrapped in a towel from the bathroom to my bedroom.

“Sarah! What is that?” she said.

“Uh what?” said my stupid teen self back, acting as though I had no clue what the hell she was talking about.

She pulled my in by finally getting a good look at my face and shoulders and what I had been hiding was something that I never should have hidden in the first place from my own mother. I had acne not only on my face, but on my back and shoulders as well. It was bad to say the very least. My towel had splotches of blood on it from where I had the worst ones. I had to explain to her that they would bleed every time I would shower and wash myself because the skin was so very thin and would break open each time I’d wash. Each time I would dry my body off with my towel, I would rub them and irritate them further and the blood would get all over. Also, I ended up having to show her that my bras and t-shirts would get blood on them and would sometimes get stuck to my skin because during class at school, I’d be still for so long that the blood would dry and fuse the fabric to my skin. Each time this would happen I’d have to rip it apart from me. In high school it was a common thing to hug your friends, and yet for me this was not possible. I would always tell people to not touch me when they would lean in for a hug, or touch me in any way. Sometimes I became very angry because of this and would wear large baggy clothing to try and ease my pain and feel at least a little more comfortable with what was going on in my mind as well as with my body. I was in pain so often and told no one.

Upon my mom finding me out, she began by taking me straight to the doctor to see if their was something to be done about this bad acne that was causing so much harm, both physically and mentally. The doctor started trying different creams and ointments on me like “Retin-A Micro” and other antibiotic ointments. I felt like every doctor visit was something new to try out. Month after month, I went to my primary care doctor until I was finally referred to a dermatologist nearby. Same thing, I was to try out the external medicines and keep my skin clean with whatever was the latest cleanser for my face and back and yet nothing seemed to help. My mom was also trying her own little things on my skin like witch hazel and other natural remedies at home. Not a difference at all. This went on from maybe 7th grade into freshman year in high school.

When I reached about 15 years of age the dermatologist I was seeing decided to start me on an oral medication which was the strongest drug at the time in the world of medicine for acne and it was called AccutaneIsotretinoin (trade name: Accutane) is a powerful drug used in the treatment of acne. Four to five months of Accutane treatment usually leads to clearing of acne so they said, but in rare cases it could take up to a year and a half. The most damaging side effect of Accutane is serious birth defects if taken during pregnancy. It is critically important for women not to take Accutane while pregnant, and not to become pregnant while taking it. My dermatologist was to start my treatment as soon as I began taking birth control. AT THE AGE OF 15. I was then sent to a gynecologist for the first time in my life.

My Gynecologist was very nice and talked to me about sex a little and about the pill before she could allow me to begin taking it. I was also to undergo a Pap Smear for the first time and blood test beforehand to test my hormone levels and to make sure I was healthy and had no infections of any sort. Turns out my hormone levels were way off and this was cause for a majority of my acne problems aside from it running in my family of course. I was cleared about a week later and returned to my dermatologist with a clean bill of health along with my prescription for birth control, and each time I was to start a round of the drug Accutane, they would also have me take a pregnancy test to make sure that I wouldn’t be causing my child any defects should I get pregnant. I understood why everything was happening and I was ready to be free of all this pain and blood and ugly festering skin blemishes on my body.

All this and by my side was my mother, quiet and making sure I had all things taken care of and I made it to all my appointments and that I took all the right steps along the way. I began at last to take the drug called Accutane.

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On the website of the Food and Drug Administration is a PDF Medication Guide for Accutane which states that: Serious mental health problems may occur. Accutane may cause: depression, psychosis (seeing or hearing things that are not real), and suicide. Some patients taking Accutane have had thoughts about hurting themselves or putting an end to their own lives (suicidal thoughts). Some people tried to end their own lives. And some people have ended their own lives.

Little did I know that I would be one of the ones who would be so affected by these side effects. And I was. I became very depressed and had many thoughts about suicide. I did not ever once self harm or drive myself to actually consider ending my own life, however, the thoughts were always there. I was on Accutane for a year and a half. My acne cleared. Eventually my depression did as well as I was helped out by my friends with this and because my pain was finally gone. I was able to interact with my friends normally once again and could allow them to touch me and hug me should they wish to. Senior year I was left with practically no acne and a smile on my face. But at what cost? Was it worth all the jumping through hoops to get there? Could I have outgrown the severe acne by myself?

My dermatologist finally decided it was time to discuss the keloid scars that had developed on my skin. The only treatments that were available at that time were injecting of the scars with corticosteroid injections one at a time to try and treat them, or send me to an alternate specialist to see what they could do. I did not want to go through the injections because they’d be painful as well as expensive. My mom took me to the alternate physician and he informed me that he could do nothing for me as he gasped in shock when I showed him my shoulders covered in the scars. He told me that their was an experimental study running in Los Angeles to do laser treatments to remove scarring such as this.

I looked him square in the eye and asked him “Would the laser treatment be painful?”

He told me that indeed it would. I immediately said no, and my mom and I left that doctor and never returned. As we drove from the office my mother began to silently cry next to me in the car. She pulled over and began sobbing uncontrollably and screaming at me that she wished their was something she could do to take the scars away from me and that she hated that I had to go through all that I had to come out with these hideous marks on my body in the end.

I looked my mother in the eyes and told her that I loved my body and that I loved her for trying so very hard to do all she could for me, but that if I was going to go to college in less than a year, I did not was to be sitting in class or at home and trying to be comfortable and be going through even more pain. I was done trying to rid myself of something that happened naturally when my body healed. I accept my body for what it is and I love my scars. I wear them proudly and she knows this now. I wear tank tops like anyone else, or dresses, or anything in which my scars are exposed and I feel perfectly alright. Thought I can understand why she is so low about such things, I think she has come to accept my decision regardless because I am very happy now. I am so happy with them that whenever someone asks me about them, I have a story to tell about my tough ride with my acne and what I went through to get them. They are my battle scars and I would not be myself without them.

Struggles and Doctors

So. I was laid off from my second bookkeeping job and I kept my government provided medical benefits. I had no concerns with finding a new position as I had about 5 years of experience. After submitting my application to about 20 positions, I had 3 interviews lined up in the 2 weeks following being laid off. Boom! New job the 3rd interview. I was the only person they interviewed and I rushed them into it since I had already gotten an offer from the 2nd interview. I decided on the latter because of the promise of medical benefits. With my seizures and my mental health issues, I knew that this was what I needed.

Though this job was challenging, it was far less stressful than my previous position in a tax office that was very fast paced and demanding. My issue was with management there, whereas with this job, it was a matter of learning all of the items in our inventory. I was working for a manufacturer of Performance Makeup used for movies and also for airbrush tattoos and body paint. I was in love! I was excited to be around creative people. However, their were many things to learn. I studied and improved by working with my warehouse manager and all the guys in the warehouse and office. Yes, I was working with all men, but I felt right at home. They all treated me like one of their own and I felt right at home. I was not the only new employee so I wasn’t the only newbie. The stress was horrible for the first month, but I was picking things up as I went along. In just 6 weeks, my medical benefits kicked in! I had also begun seeing a therapist who helped, but I felt I needed more.

I decided I wanted a second opinion on my seizures. It had been a year since they had started and I had not been able to get much help with them and they continued on no matter what I tried. I attempted to meditate, exercise, do the essential oil thing, almost anything you could think of naturally to help with my seizures and my flashbacks and anything and everything associated with my PTSD. Nothing helped. I needed professional help. So I went and got it.

First things first, I went and saw my new primary care doctor. I told her all about myself and my medical and mental health history including my most recent hospitalization the year before. I also informed her that more recently I’d begun having little hallucinations and hearing voices. She immediately put me on an antidepressant and anti-anxiety medication and referred me to psychiatry because I was also having panic attacks at work.

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When I first spoke to someone regarding my psychiatric doctor appointment, basically each person I spoke to would ask if I was having thoughts of suicide. The truth was, I wasn’t. I was under lots of pressure at work and now I was searching for medical help yet again. I wanted to get to the bottom of all this and I wanted to be healed. Well, maybe not healed, but I wanted to feel okay again. I was not okay. So, I went and saw my psychiatrist. The voices had not gone away, so she prescribed me an anti-psychotic medication which would help with the hallucinations and the voices. I was diagnosed with depression for the first time in my life, and she informed me that that is where my psychotic episodes derived from.

I decided I needed to inform management at work in case I had a seizure while at the office. I did so in the form of a heartfelt yet informative email to everyone I worked with (once I’d received approval from the owner), and I was so pleased to hear that everyone was very supportive and promised to help me should I ever have an episode at work. Not long after I wrote the email I had a few seizures at work. I do not regret informing them AT ALL.

Soon, I made plans with my primary doctor to see a Neurologist once again. I wanted my second opinion on my Psychogenic Non-epileptic Seizures (PNES or NEAD). This doctor was a total douche. No sooner had he walked into the room than he basically was pushing me back out the door. I wasn’t leaving without some kind of testing happening though and I made that very clear. His medical opinion went something like “What you have are episodes, not seizures.” Well… He was simply one of those doctors who believe that my seizures are “pseudo seizures”, basically that I was faking it. Which has been a common belief for people who have what I have. Non-epileptic seizures just aren’t very well known and their is no medication for them because they are not epileptic. He allowed me to undergo another EEG test that would measure the electrical activity of the brain or show if I had epilepsy or not. Funny thing was, this doctor did sign a letter saying that I should not be driving because I was having “seizures”! The fuck?! So I had to find another way to get to my job which was an hour drive away already for me. I had my family driving me at first until I found my WONDERFUL alternative means of transportation. OCTA Access! Such a blessing let me tell you. I will have to write another little blurb on that entire experience sometime.

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Negative. I had my second opinion and it sucked. So, I stuck with my psychiatrist a bit longer before having a major breakdown in December. Nearing was the date of the anniversary of the sexual assault that had happened to me 3 years previously, along with flashbacks, crying fits, panic attacks at work, and seizures in my sleep…

Therapy Sessions and Onward!

So once I had my diagnosis, my job was to save up some money, and seek out a therapist all while waiting for my medical benefits to kick in during my probation period of 6 weeks. In that time I learned the ropes at my new job in Fullerton.

For the most part from therapy my goal was to get through my trauma from my abuse so that I could recover and get past the disorder that was so crippling that it was causing me to have these seizures, these episodes. After being so depressed that I was having panic attacks and anxiety attacks, and then the bouts of crying for hours for so long, I was so drained and exhausted from being depressed all the time. Therapy was definitely an outlet that I needed. I am not the type to rely on my friends to carry my burdens, so I felt that therapy was a necessity.

I sought out a good therapist and we began working on everything from my childhood and teenage years up until my current living situation, family, romantic relationships, friendships and work life. We were covering all the bases. However, when it came down to it, I was still having my seizures. I was taught in therapy to calmly think through my emotions and why I was feeling them. This was new to me. Usually if something didn’t feel right I would just remove it from my life. What I was now learning was the coping skills that I had never had in my life. I was taught to meditate and do deep breathing exercises and drink teas and do all sorts of mind exercises to help me figure out why situations made me feel the way they did. This is where I discovered I had OCD tendencies and also where I found out I had a condition called Dysthymia, which explained why I had chronic low-level depression. Chronic mental illness was not something that I had anticipated hearing about when in therapy, but I was glad to have learned about it so I could work on how to care for myself.

What I got from seeing my therapist was mostly help in my daily life. From what she told me about my PTSD was that I needed to find forgiveness in order to be healthy. That was not about to happen and so I avoided talking to my therapist about it any longer and saw her less and less until I stopped seeing her altogether. That was also due to the distance from my workplace had changed when I changed jobs.

In my next Blog I will discuss my next medical excursion when I was laid off from one bookkeeping position and got a new one further away from my home and much more fast paced than my previous position, and that is saying something!

State of Mentality: Preliminary Results & Diagnosis

The team of physicians including the main doctor on my case and the underlings that were learning under him all entered my room the morning of the 3rd day of my being admitted into the UCI Medical Center. What the doctor told me was a relief, but also a major concern to myself and my family to hear.

The attending physician informed us that the MRI they had taken proved to show no signs of any tumors or signs that anything in my body was producing the seizures. He then went on to tell us that the Video EEG they took of me in order to record a seizure had shown that indeed their was no sign that any electrical misfires in my head were occurring, what I had was not at all epilepsy. They decided to tell me that what was happening was referred to as “pseudo seizures”, which in regular people talk means that they are psychological and that nothing was medically wrong with me. They told me that they would be sending a psychiatrist in to speak with me and evaluate me later that day. With that, they all exited the room.

I must admit that I was somewhat disappointed in the result. Not that I was disappointed that I did not have epilepsy, but that their was no medication the doctors could offer me to fix whatever was wrong with me. That no tumor was someplace in my body that could have been removed in order to make these seizures stop. That their was no “easy” solution to what was happening to me. Sending in a psychiatrist meant to me that this was going to take time and that their was indeed no simple solution to what was happening to me.

After waiting hours and hours for the psychiatrist to show up, she finally arrived around 2pm that afternoon to begin her evaluation. She asked me if what I was going to discuss with her could be spoken about in front of my father, and when I looked to my Dad I immediately said no (not because it had anything to do with him, but due to the fact that their were just some things my Dad did not know about me). She went ahead and asked him to leave the room until she was done speaking with me. He left slowly, unsure as to why I’d asked for this, but still prepared to allow the doctors some space.

She began by asking me if I had been in therapy before and if I had had any mental illness previously. I started out by explaining that I’d always had issues with anxiety since I could remember and that in high school I had my bouts of depression like other teens, but a bit worse I feel since I was on some heavy medication for my acne (Accutane) which really upset my mental state. I also explained that in the most recent few years I’d began to have panic attacks as well, which I believe stemmed from some sexual abuse that had happened to me when I was in high school. However, more recently in 2011 during the Winter holidays, a family member’s significant other had sexually assaulted me. What stemmed from that occurrence was the worst depression I had ever been through in my life. I would cry for an hour or more every day of 2012 for over 6 months. Only when I was encouraged by my best friend to start preparing for a 5k run and started to have an healthy exercise routine, did things start to improve drastically. I stopped crying for the most part unless I spoke about the assault from the previous year, or if flashbacks took over my mind as they tended to do. I had also gone through hallucinations and such other things that upset me.

Upon hearing my stories and happenings in my life, the psychiatrist that evaluated me concluded that I have PTSD mainly, and that my seizures most likely were right along that and are called Psychogenic Non Epileptic Seizures and so were psychologically produced. Along with Post Traumatic Stress Disorder, I have a generalized anxiety disorder, depression, panic disorder, and a touch of obsessive compulsive disorder. The list seemed to go on and on. She suggested that since I did not have medical insurance that I seek a cognitive behavioral therapist to talk to and a regular psychiatrist that could regulate some medication with me and a schedule to follow and work on with my therapist.

She eventually left my hospital bed and room and brought my Dad back in. I told him what she’d told me and he carefully did not ask too many questions. At the end of this, a nurse came in and began prepping my trip out of the hospital so I could return home at last. The next week I started at my new job as a Bookkeeping Assistant and held that job for almost a year. I also sought out a therapist to begin my healthy recovery. All through this time, the seizures continued on…

Below is a table displaying the differences between Epileptic and Psychogenic Non epileptic Seizures:

Epil vs PNES

State of Mentality: Unstable; Part 2

Ever since May 5, 2013, I have been a completely different person and have been changing like crazy. Much has happened to me and I would like to tell you all about it and all that I have been through up until this point in time. If this post is long, I will once again cut it up and will continue it another day. Thanks for being patient!


I have seizures. When I say this, I mean full blown, head shaking, arms twitching, leg jerking seizures. They are psychogenic non-epileptic seizures (PNES). This means the following for me:

PNES are attacks that may look like epileptic seizures, but are not caused by abnormal brain electrical discharges. They are a manifestation of psychological distress. Frequently, patients with PNES may look like they are experiencing generalized convulsions similar to tonic clonic seizures with falling and shaking. Less frequently, PNES may mimic absence seizures or complex partial seizures with temporary loss of attention or staring. A physician may suspect PNES when the seizures have unusual features such as type of movements, duration, triggers and frequency.

Below is an article on the Epilepsy.com website with a description of the condition I was diagnosed with later. My diagnosis has changed and transformed over time though and I’ll explain further later about that.

http://www.epilepsy.com/article/2014/3/truth-about-psychogenic-nonepileptic-seizures

May 3rd 2013 was my very first one. I was with my boyfriend at the time in his home in Anaheim. We were being a little bit intimate when it started. It lasted about 5 minutes. My body began thrashing wildly, my head was jerking from left to right and my limbs were hitting my body and the bed and I was completely out of control of my movements of any kind, however I was completely conscious of him trying to talk to me and that he was watching me. He did not know what to do so he just stood there watching me helpless and not knowing what to do to help me. Once I finally stopped shaking and flailing around on his bed, he tried to sit me up. I eventually sat up, but all the while an arm would twitch or a leg would jerk or my head would shake. I was unable to speak because I kept stuttering or staring off or rolling my eyes. Each time I attempted to only groans would come out or chattering of my teeth or biting my tongue or even a sucking of some sort. Eventually after putting some warm clothes on, very slowly, I could say short sentences and told him what I was feeling. My neck hurt from all the jerking back and forth, but other than that I was simply exhausted. I had to urinate so I went to the bathroom. I could not. I came out of the restroom and asked for a sugary drink thinking that perhaps it was an epileptic seizure and I needed some sugar in my system. He even took me outside for some fresh air. All the while I was twitching and speaking oddly and staring off at nothing. I was unable to focus at all. Eventually we went back into his bedroom and we tried to watch a television show. He gave me some sleeping pills hoping it would calm my body. I could not pay attention to the show because I’d end up staring off or shaking my head or jerking around. I was afraid to drive home and didn’t know what to do so I tried to lay down to sleep. All the while lying there twitching and jerking for about 20 minutes until I fell asleep (he stayed awake to watch me all night). I woke up a few hours later to find I was back to normal. I went and was able to use the restroom at last. Went back to sleep when I was able to. No more twitching or anything.

The next day I went home and told my family all that had happened and I was to see my sister’s doctor the next day. I rested all day in bed.

When I saw the doctor for the first time I told her all about what had happened and she immediately started me on the medication called Phenytoin which is a medication for epileptic seizures. I was supposed to start work at my new job that week though so she started me on a low dosage hoping the seizures would decrease. I had gotten the job offer a week before my first seizure. Perhaps this was a shock to my system getting such a high paying job. So strange right? So what happened next? I had maybe 2 more seizures in the week before I sat down and saw the doctor. She told me the next time I have one to let her know. I did, the next Monday after realizing I was having an allergic reaction a few days after starting the medication, which presented by me having bumps underneath my skin under my ears and on my neck. I had a seizure in front of my parents and family at home and they took me to the Emergency Room in Anaheim. The doctor decided to run a CT scan because the last time I was there, I’d had one due to a car accident I had been in and they wanted to see if the 2 things were related possibly. They gave me a shot of the same medication(Phenytoin) I’d been on and I was itchy all over my body so they gave me a shot of Benadryl to stop my reaction. They decided that I’d need to go in for an MRI with dye and without(to see if something inside my body was causing the seizures) and also be hooked up to an EEG machine to test the electrical impulses and activity in my brain. So I was in contact with someone local whom I could get these tests done with.

One major obstacle in my way with all of this doctor nonsense was that I was at the time uninsured. Luckily for me, MSI (sort of like MediCal) was something available to me so I could sign up for emergency benefits due to it these seizures coming out of nowhere and me being unemployed at the time it started. I immediately signed up before my first day of work and would have the benefits in just a few short weeks. Amazing what you find out from doctors these days! So I got into gear and got all my paperwork turned in in just a day. Now I just had to wait for the funds, or I could pay cash for the tests. I attempted to try to get the neurology tests started up by contacting a doctor friend of my doctor and they basically turned me away. So my physician advised me to go to the UCI Medical Center in Orange so they could admit me and run all the tests I needed to have done. I informed my new employer and was off to get myself admitted to the hospital ASAP.

With my Dad and sister older sister at my side, they helped me go through all the questions and such in order to be admitted to UCI Medical Center. This place was very quick with admitting me. Within 2 hours I was on my way up to get my MRI. Once done with this scary test full of loud noises and whirs, they brought me back to my little room so they could begin hooking me up to a 24 hour EEG machine. The goal of my doctors? To capture me having a seizure with it so they could figure out the source of the seizures. All this talking to doctors was making me so nervous. I was such a shaken up mess and so afraid. My sisters were coming and going to see me once I was admitted and my boyfriend came to stay the night with me here and there when he wasn’t at work. Such a sweet thing to do. He was so frightened for me, the poor thing, I will forever appreciate him for all he did. Sticking by my side like that through it all. My family as well. All calling me and checking up on how things were going with the tests.

When my boyfriend had left for work the next day after being admitted, my dad took over babysitting me the 2nd evening of my being admitted. My dad was just talking to me asking me how my day had been when I began trying to tell him and my mind went blank and started staring at him and my breathing stopped. The nurses had placed these giant cushions on the rails of my bed in case I had a seizure so I wouldn’t harm myself. Good thing too! A seizure started and I was hitting those cushions like crazy with my arms and my legs were kicking and my head was hitting the cushions as well. Shaking back and forth like crazy. I could hear my Dad yelling down the hallway that I was having a seizure to the nurses. Immediately I could sense them all around me trying to talk to me and communicate something to me to calm me down. Eventually I stopped and they told me to let them know that I was okay by moving an arm on my own. I did so and waved softly at them. I was exhausted and sure that I’d finally be able to sleep properly. An odd little fact, once I had my initial seizure each one following was anywhere from 20 seconds long to a minute long. Nothing lasted as long as that first one. I think something clicked in my brain, though not sure what it was.

Now all I had to do was wait as patiently as possible for the test results from the Video EEG and for the MRI test results. Had to wait almost 24 Hours for it all. The next day would hopefully be full of information as to what was causing all these seizures.