Sunday, November 25, 2012

My CRAZY Chiari Story!

Headaches aren’t normal?!? 

I had a pretty normal childhood growing up. I loved to play outside, climb trees, make mud pies, and do normal kid activities. I knew there were certain things I wasn’t too good at, such as catching a softball or baseball because I had this overwhelming fear that I would miss the ball and it would hit me in the face. It turns out there was a very good reason for me to have that fear. I was a normal kid, or at least I thought I was, I thought everyone got headaches every day.

(Playing in the snow)
 
 (My 7th Birthday Party with neighborhood friends)
   I had to keep a bottle of Aleve in the school office all through middle school so that if I got a headache I could go take some medicine to make it better. It seemed that my headaches got worse through my teenage years, to the point that the pain would make me sick to my stomach. My mom knew this wasn’t normal and took me to see a Neurologist when I was 15 years old for him to have me stand on my left foot and touch my nose, stand on my right foot and touch my nose, walk on my heels, walk on my toes, and practically stand on my head and recite the ABC’s backwards (Not literally, but he may as well have done that). At the end of my appointment he proceeds to tell me that I have Migraines, DUH - I was a sophomore in high school and I could have told him that, I didn’t need a Neurologist for that diagnosis. We wanted to know why I was having Migraines, but this Dr didn’t feel a need to investigate why. He chalked it up to my hormones going crazy as a teenager, and for the most part that made sense. He wrote me a prescription for migraine medicine and we were on our way. The medicine helped for the most part over the next few years and I thought nothing of it. I figured I would just “outgrow” the migraines as I got older and when my hormones settled down they would go away – boy was I wrong!

The Beginning of the End

Fast-forward 5 years – I am now 20 years old and I have decided to join the United States Air Force. It was a big commitment but I was ready to do something with my life since I still had no clue what I wanted to do! I left for Basic Training August 15, 2005. I was so nervous, all I could think is what am I going to do when I get a migraine in BMT? They don’t exactly just let you go lay down because your head hurts or you don’t feel good! Luckily I only got 1 really bad headache through basic, and lucky for me it was late at night and time for us to go to bed anyway. I was able to complete Basic Military Training and Tech School without getting a really bad migraine.
 (At my Basic Training Graduation)
 (At my Basic Training Graduation)
(My classmates from Tech School)
 In Dec of 2005 I got stationed at Travis AFB, CA to do my job as a Dental Assistant. I was so excited to get my career started, I couldn’t wait! Finally after a few weeks of in-processing and going to briefings and completing other sorts of trainings I was able to do my job! (It was around this time that I got married to the guy I had been dating for the last two years) I was finally a dental assistant! I LOVED IT! Though I hated having to be at work at 7 AM every day, I am not a morning person, I loved what I did and very much so looked forward to work! It was shortly thereafter that all the ER trips started. I was having severe abdominal pain nearly on a daily basis. The doctors could not figure out what was going on. They tested me for all kinds of stuff and even did an exploratory laparoscopy to see if endometriosis was the cause of my pain, it was not. The doctors were dumbfounded and left scratching their heads. Then the migraines started up again. I was getting headaches nearly every day and often times my headaches would turn into migraines. The ER trips became even more frequent, not only was I having unexplained abdominal pain, but I was having daily headaches and getting migraines several times a week. I missed a lot of time from work and people that I worked with thought I was just making it up so I could go home. I even began to believe that I was crazy or at least a hypochondriac, at one point. I was going to the ER at least once a week at one point in time. It was ridiculous and I was miserable. I never felt well and I thought I was crazy. It all began to take its toll on me and I became depressed. Finally after months of going to the ER and about 50+ ER visits one of the doctors decided to do a full body CT scan one night when I went in with a migraine that was so bad I was throwing up. I remember going into the ER with a bag of frozen vegetables on my face because we were out of ice at the time, you should have seen the looks I got. So after I got my CT scan and they doped me up the Dr comes back into my room and tells me that they found something wrong on my scan. That was the moment that I heard the dreaded words “You have Chiari Malformation”. It didn’t mean too much to me at the moment because I was loopy from the meds they had given me not to mention I had no clue what it was, and I was in no state to comprehend what the Dr was telling me. Upon returning home that night I went to bed and got some much needed rest. The next day I was looking over my discharge paperwork from the ER the night before and saw Chiari scribbled on the paper. I briefly remembered the Dr saying that something was wrong with my CT scan and that I had to go see a specialist. This is where the handy dandy “Google” search came in to play. I was on the computer for hours reading anything I could find on Chiari. I was terrified seeing as all I could find for the treatment for this thing called Chiari was brain surgery, I couldn’t have brain surgery – NOT ME! Things were starting to make more sense to me now. I had been having Chiari symptoms all along and never knew it because I didn’t think the things I was experiencing were significant enough to tell my Dr about. How was I supposed to know that the feeling of food stuck in my throat 24/7 meant something was wrong, or that I was more tired than usual, or that my headaches were coming back? Remember, I thought I was going crazy! I was diagnosed with Chiari on Feb. 1, 2007. I got an MRI and went to see a Neuro Surgeon sometime in March. I remember my first NS appointment like it was just yesterday! I went in to see Dr. Taggard and he asked how I was doing and what symptoms I was experiencing. I proceeded to explain my symptoms to him and he straight up told me that “You are just psyching yourself out based on what you read online, Arnold Chiari 1 doesn’t normally cause problems.” I wanted to punch him in his face, here he was practically telling me that I am making it all up and that I am crazy to my face! I couldn’t believe it! I held myself together and told myself to wait and see what he says at the end of the appointment. He tested my gag reflex – I had none, he tested my reflexes – the reflexes in both of my hands were damaged, last but not least he poked me down my arms and on the tops of my feet with a safety pin- it felt sharp everywhere except on the top of my left foot, it simply felt like he was just touching me with his finger. This is when Dr Taggard said, “Things are worse than I expected; you need to have surgery ASAP. I can’t tell you when it will happen, but I can tell you that the first thing to go will be the use of your hands.” I couldn’t believe what I was hearing! I needed BRAIN SURGERY? ME? WHAT? As my eyes filled with tears I told him that I would go along with his recommendation for surgery in an effort to save my military career. I left the appointment and returned to work in shock. All I could think is “Will I make it through surgery? What if something goes wrong? Will I be able to walk again? Will I be able to talk? Will I ever be the same?” I went home and called my loved ones and told them the news. No one could believe that I needed to have brain surgery! My Mom told me not to worry that she would be by my side and that I was going to be okay! After finalizing the paperwork with the NS a date was set. April 24, 2007 was the day that my life would forever be changed! My mom kept her word and flew out to Fairfield, CA from Port Charlotte, FL to be with me. Me, my mom, and my husband spent the day before my surgery together in San Francisco! We had a blast!
 
 
(All 3 photos were taken the day before I had Brain Surgery)

I remember barely sleeping the night before surgery. We had to be at the hospital at some ungodly hour of the morning and I was exhausted. Not only was I exhausted but I was terrified, they were about to cut my head open and expose part of my brain! I vaguely remember the moments before going back for surgery, but I do remember saying “bye” to my mom and husband, all I could think in those last moments is “Will I ever see them again?” All three of us were scared! After saying bye I walked back to the prep room with the nurse and they started my IV. Moments later I was out. Obviously I do not remember anything during surgery so I will skip over to when I woke up. Upon my waking I remember I demanded that someone go get my mom and I wanted something to drink. When the nurse came back and said that she couldn’t find my mom I was pissed! I told her “I want my mom and somebody better go find her!” Shortly thereafter they came back with my mom and I proceeded to drill her and ask where she was. Turns out that, she and my husband got hungry while waiting 5+ hours for me to be out of surgery. Once they got word that surgery went well, they went to grab a bite to eat since they were told it would be another hour before anyone could see me. At that moment I didn’t care how long they had been waiting or how hungry they were, I wanted to see them! Once I got to see my mom and my husband and I calmed down, the pain set in. It was by far the worst pain I have ever felt in my whole life! I can’t imagine anything worse! Mom decided to sleep at the hospital with me in case I needed anything in the middle of the night. It’s a good thing she stayed because something went wrong the first night I was in ICU. Apparently my body didn’t like the Morphine they were administering every hour through my IV and it ended up making me sick to my stomach. Just when I thought my pain couldn’t get any worse I began vomiting! The pain was unbearable! Once they figured out the morphine was making me sick they called my NS and he ordered them to change my pain medicine to Dilaudid. That eased my pain and I didn’t have any further complications as far as meds go. I ended up staying in the hospital for a total of 5 days and it was pure hell! The day after my surgery one of my nurses felt I was being over medicated and took it upon herself to deny me the meds my NEURO SURGEON had prescribed, but instead she called the Dr on call (who knew nothing about what I just had done or my condition) and was told to give me Tylenol and Benadryl.  Now anyone that knows anything about Chiari knows that Tylenol and Benadryl will not touch Chiari pain with a 10 foot pole, much less right after having your head cut open! My mom threw a fit and I ended up getting my meds as prescribed. I won’t go into all the details about the things that happened in the hospital because that is another story in itself! After 5 days of torture in the hospital, I was more than ready to go home. I was given 30 days of medical leave to stay at home and recover from surgery.        

(5 days after Brain Surgery)
Once my 30 days of medical leave was over it was time for me to return to work. I worked in the x-ray department for the next 60 days while I was on a profile. A profile is basically a note from the Dr saying you can’t do specific things and I couldn’t do my primary job as a dental assistant. Once my 60 day profile was up I tried assisting again but it was too painful. I had to be on a profile for the next several months as it was impossible for me too look down into people’s mouths all day every day. The Air Force has rules and when someone is on a profile for so long they put them through a MEB (Medical Evaluation Board) to determine if they can stay in the military or not. I eventually got the news from my Dr that since I had been on a profile for several months she had to put me up for an MEB. I knew that this could be the end of my military career. I was in the midst of preparing to go to England for 2 years when I got the news of my pending MEB. My orders got cancelled. A couple of weeks later my Dr tells me that the medical board has deemed me unfit for duty and I will be released from active duty. I was informed that I could fight this decision but knew that would entail even more stress in my life that I did not need. (Might I add I was having a hard time with my supervisor who at the time was harassing me for some unknown reason, and my marriage was on the verge of falling apart) I did not want to stay and endure anymore stress than need be, yet at the same time I didn’t want to just give up either. I didn’t know what to do. After talking to several family members and close friends I decided that it would be best for me to cut my losses and go home. About 2 weeks after signing the final paperwork I was back home in FL. (Dec 2007)

 Let the job hunting begin!

Though I was devastated about losing my military career I decided that collecting 6 months of unemployment was not what I wanted to do, I wanted to start working right away. I did just that.  
(Me and my two younger brothers at a family Xmas party in '07)
 After being back in FL for just 3 weeks I started taking my resume to Dr offices that were hiring. I ended up landing a job within the first week as a medical assistant at a Podiatrist office. I loved that job as well! I worked there for about 6 months until the office manager (the Dr’s wife) made me so mad that I walked out! Luckily I had already been applying to dentist offices in the area and had another job in no time. I got hired to be a dental assistant at an office in Pensacola, I didn’t last long there seeing as I openly asked the office manager why he was filing one thing with the insurance when the patient had something totally different done. Needless to say they let me go 3 weeks into my new job for unknown reasons. While waiting to land another dental job I went on to be a cashier at good ole Wal-Mart! I worked there for a while, about 6 months from what I can remember, until an opportunity in another dental office came along. This dental job also only lasted about 3 weeks, and once again I didn’t get a reason why they were letting me go. This is when the depression really set in for me. I have always had a job since I was 16 years old, at times I had 2-3 jobs at once, and I never got fired from any of my jobs. I was always the one to leave. I did not take it very well when I had just been fired from not 1 but 2 different jobs doing the thing I loved to do. The depression set in and it took over my life. I had started going to school just so I could get my GI Bill to cover my bills. I did great my first semester when the depression was minimal, but the more time went on the worse my depression got. It got to the point that I started having suicidal thoughts. I was tired of everything. I felt like such a failure. I was hopeless and miserable. I had just lost my military career, something that I loved, and I couldn’t keep a steady job. I was losing my mind! I had attempted suicide a couple of times at this point, nothing serious but I made it clear to everyone that I wanted to end my life. My depression took its toll on my marriage and my husband at the time was beginning to want a divorce. That is when things took a turn for the worst. My husband was leaving me. He spent a week or two looking for his own place and found one that he was going to move into. (July/Aug 2009) I remember the night he told me that he found a place and that he was moving out. I was devastated. I couldn’t handle losing my husband, the person I loved more than anything. He was my rock, my everything and he was leaving me, I truly felt that I had no reason left to live. I lost my military career, I couldn’t hold a steady job, and I was now losing the love of my life all because I was worthless. I wanted it all to end. I wanted to die! I put a plan together in my head that I would put into play the next morning as soon as he left for work. I would end it all. I would never have to feel pain ever again, not after what I was going to do. So the very next morning when he woke up and went to work I waited till he was about 5 min down the street and I starting acting out what I had planned. I got a notebook and started writing letters to everyone that I loved, or at least the most important people to me. I told them that I was sorry, that I loved them and left instructions on what I wanted done with my belongings and money. Once I was done writing my letters I got my anxiety and pain meds out of the medicine cabinet. I knew exactly how many pills I had because I had been saving them for this very reason! It was then that I started to take each and every of the 118 2 mg Klonopin and the 20-30 7.5/500 mg Lortabs that I had. I took every single pill. I had no intentions of ever waking up. When I was done taking the medicine I went to the couch and laid down and fell asleep. It turns out that day my husband came home for lunch, which he rarely did, and found me on the couch blue and foaming at the mouth. My organs had already started to shut down. He called 911 and I was taken to the hospital. I do not remember anything for quite a while. I have no idea what they did to me while I was in the hospital; all I remember is waking up in the psych ward. I was in the nut house! I was pissed. I wanted to go home, but of course they wouldn’t let me. I called my mom and husband and they told me what I had done. Needless to say I stayed in the hospital for 2 weeks while I received 8 rounds of ECT (shock treatment). They literally electrocuted my brain to try and stimulate the chemicals and balance them out again since meds weren’t working. Finally when it was time for me to go home reality set in that I didn’t quite have a home to go to. My husband had moved out of the house we were living in and gotten his own place while I was in the hospital. I had nowhere to go, so I had to live with my mom. I went back to school and was doing okay for a little while until I just lost interest in everything all over again. The depression had set in yet again.

My Name Is Jessica and I Am An Addict.

Once the depression set in full force I dropped out of school and spent my days at home sleeping. I knew that there was no way I could attempt suicide again because of what it had done to my family! It hurt them way too bad for me to put them through that again. I didn’t know what to do. I didn’t want to feel the emotional or physical pain anymore and I knew suicide was not the way to go because it would destroy my family yet again! This is when I started to abuse my Rx medication. For some reason my doctors were still prescribing me narcotic meds in spite of my recent suicide attempts. So what do I do? I started taking my medicine way more than I was prescribed. There was a point that I was taking 15-20 Lortabs a day and anywhere from 6-10 Xanax a day. I was taking all of this medicine to numb my pain physical, mental, and emotional. I didn’t want to feel anything. I had failed at life. Failed in the military, failed at holding a job, and to top it off I failed at my marriage. I was a failure. I had no ambition, no reason to do anything, no motivation. I fell into this deep dark black hole and I could not see the light at the top. Shortly after I started abusing my medicine I started drinking heavily. Everything just kept getting worse and worse. I didn’t know what to do about anything. I was spinning out of control. Things got so bad I ended up getting into legal trouble. I was arrested 5 times within a 3-4 month time frame. The first arrest was for domestic violence (family argument), second was for DUI (Rx meds), third was for driving on a suspended license, fourth was for violation of probation for driving on a suspended license, fifth was for the second DUI and driving on a suspended license combined. Neither of my DUIs involved alcohol. I denied that I had a problem up until I had been arrested 5 times for things that happened while I was on my medication. I didn’t think I had a problem because my doctors gave me the medicine. I wasn’t buying it on the street and I wasn’t doing hard drugs so in my mind it couldn’t be that bad! I had a mental addiction to my pills, I thought I needed it more than I really did and it caused several problems for me. After my 2nd DUI, on Oct. 26, 2010, I ended up spending 2 months in jail. The state wanted to give me a year in jail seeing as I had already had 1 DUI just 2 months before (Aug. 19, 2010), but lucky for me the judge I had was a Veteran and he wanted to help other Veterans instead of making them sit in jail. Judge Maney is the main reason I was able to get help. He fought for me to go to rehab instead of sitting in jail for a year. My sentence was 2 months in jail and a 30 day rehab program, plus all of the stipulations of probation. While all of this was going on my divorce was finalized.
 
(My Mom made this collage while I was in jail)

The Road To Recovery

Once I got out of rehab I went home to face the terms of my probation. I was terrified. I didn’t know how I would ever make it through 2 years of probation! Needless to say, I took one day at a time and I ended up completing all of my requirements. I would be off of probation already but I haven’t been able to pay all of it off yet. Luckily my Probation Officer is working with me till I can get it paid off. If it weren’t for her working with me and not violating me I would end up back in jail over the money I owe! I still owe about $1600. I hope to have it all paid off soon but it’s hard seeing as my Veterans disability got cut in half earlier this year and I have hardly been able to work over the last 3 weeks or so due to Chiari complications.  – I moved to Tallahassee, FL in Feb. 2012 to be with my ex-husband. We had finally gotten back together. It took me 3 years to get him back! We went through a lot of crap together, but I feel that only makes us stronger. We are now living in Jacksonville, FL and I could not be happier with how our relationship is going! We are hoping to have a “little booger” next year as long as everything is going well with my Chiari! It has been a long and hard 2 years but I have made a lot of progress and my life is finally back to normal! (Besides the Chiari problems)

(Pics of Matt & I throughout 2012)

Waiting for Answers

As of today I am waiting to get answers from my Dr’s. Right now they are trying to tell me that my most recent MRI looks good and that there are no abnormal post-surgical changes. They propose to put me on sleeping medication to help me sleep and send me to physical therapy to help with my neck pain. I have requested to see a Neuro-Surgeon and am waiting for an answer from them as to whether they will send me or not. (I go to the VA for Veterans as I do not have good insurance to go anywhere I want) I am going to reach out to the Dr that did my surgery while I was in the Air Force and see if I can get him to read my most recent MRI and give me his opinion! I hope he will because I am tired of feeling like crap!



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