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.

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.