On June 25, 2009, I was officially diagnosed with Tourette's Syndrome. Since then, every June 25th has been deemed my annual "Twitch Day".
Life has undergone so many changes since I started exhibiting symptoms of TS. If not for Tourette's, I wouldn't have started writing. 1,149 posts later, I'm still at it. Granted, it's not as often as I would like to publish. As I have been feeling better, I've been spending less and less time online. But, nearly 1,200 blog posts is quite an accomplishment (for my ADHD ass, anyway).
Because of Tourette's, I am also currently on Social Security Disability. I'm making less than half of what I did, working technical support for Verizon Wireless, but we get by. Some months, it requires one hell of a juggling act to make ends meet. But, if it weren't for TS, I wouldn't have become a stay-at-home dad. I would likely be working 10-12 hours a day, and my little girl would spend most of her week in daycare. There is nothing better than sitting on the couch, having her walk into the living room, staggering and sleepy eyed, and getting the first hug of the day. I am so incredibly lucky to be able to stay home, do some chores around the house, and spend time with my baby.
In the last 4-6 weeks, I have doubted the possibility that I have Tourette's Syndrome. Since starting on a gluten free diet, my tics have all but disappeared. Up until today, I have only had one tic in the last month. I have read in a couple of places that, for unknown reasons, Tourette's and Celiac disease tend to go hand in hand. Anecdotal evidence suggests that if you have Tourette's Syndrome, odds are you have some type of gluten intolerance.
So far today, I have been ticking like mad. They're complex tics, meaning that I'm having motor tics and vocal tics simultaneously. My "go to" tic has always been where my head cocks back violently, and I, well, bark.
I have been stressed out today, and I didn't sleep very well last night. Pair that with the fact that I'm exerting myself more and more each day (physically speaking), and I tend to overdo it. I forget that, just six weeks ago, I couldn't walk. Now, I'm spending more quality time with my daughter. I'm doing dishes, and laundry, vacuuming, and taking out the trash every day. I've started to add some type of physical activity to my day. I have also stepped up my volunteer work in recent weeks. I have to remember, "baby steps". I need to pace myself, so that I don't die from exhaustion before the end of the month.
I thought my Tourette's had completely gone away with the start of the gluten free diet. Turns out, I was wrong. It's no big deal. I can handle this.
I've said it before...the twitching, the stuttering and jerking and shouting have all
become part of who I am. To be honest, I can't picture myself without
it anymore.
I am Twitch, as much as I am Adam.
Showing posts with label living with Tourette's. Show all posts
Showing posts with label living with Tourette's. Show all posts
Monday, June 25, 2012
Monday, August 29, 2011
Sunday Confessional: I Need A Financial Bailout
I was sitting at dinner and thought that it might be interesting to try a regular weekly post on The Twitch. I wanted to write something that had a little depth to it. I realized that it has been a while since I have talked about the things that have really been bothering me. I started this site to discuss my Tourette's and PTSD, among other things, and have found it very therapeutic to let things out.
That being said, I have decided that every Sunday, I am going to have a post called 'Sunday Confessional'. Each week, I'll write about my medical conditions, or childhood memories or what has been troubling me from the previous week. I promise to be extremely honest and open. I won't hold anything back, although, I'm sure on some subjects I probably should. I know that by the time I have figured all of this out for this week, I probably won't technically post this piece until Monday AM. But, as long as I started it on Sunday, it still theoretically counts as a Sunday post, right?
This week, I have decided to write about the one thing that keeps me up most nights...money. Or, should I say, the lack of it.
Three years ago, when Lennon was born, my wife and I both worked as trainers for a major cell phone company. We were living very comfortably, making roughly $125,000 a year between the two of us. We were able to buy all of the babies furniture and clothing in advance and pay cash. We had a very nice three bedroom apartment. Right after she was born, we purchased a brand new Dodge Grand Caravan minivan with all the options. With our income, it was no sweat to take care of two car payments, along with our other bills. We were doing so well financially, that we would regularly max out our credit cards, then pay them all off in a matter of 60 days. We would do that repeatedly. My credit score was amazing.
In September of 2008, we moved from Albuquerque to Phoenix, to be closer to family. Both of us were able to transfer with work into technical support positions at the same pay. We moved into a beautiful three bedroom house with a garage. It was the perfect house for us. My wife cried the day we moved out, in fact. Things were good. We were home. We had our first Christmas as a family of three, tree and all.
I went out on Short Term Disability in April of 2009. Short Term is a great option, but like Long Term, which kicked in that October, you're paid only 60% of your base pay. You no longer get any shit differential, incentives, bonuses or commissions like you did as a full time employee of the company. So, my pay actually took a cut from about $4800.00, to $1983.00 a month. 40% of what I was taking home.
In June of that year, my wife went out on disability, due to complications that occurred during Lennon's delivery. So, both of us were making about 40% of what we were accustomed to at that point. On June 25th, I was diagnosed with Tourette's Syndrome. The following month, I was diagnosed with Post Traumatic Stress Disorder, PTSD, as a result of years of emotional and physical abuse from my parents and scores of childhood bullies. I immediately was placed on Long Term Disability (which is set to expire this October), and was told to fill out paperwork for Social Security Disability.
Somehow, we managed to keep up most of our bills for the next year. The first thing to get set aside were the credit cards. Then we got behind on the van. We had to voluntarily surrender it last June. Interesting fact: once a vehicle is repossessed and sold at auction, you still owe the difference between the loan amount and sale price. Nice, huh? We moved out of our three bedroom/2000 square ft. house, and into a 600 square ft./1 bedroom apartment to save money. We put Lennon in the bedroom. Jessi and I put our bed in the living room. Very cumbersome, to say the least.
It got to the point were we had no room for our dog, Ollie. Our little apartment was so cramped, he couldn't walk anywhere. Our friends, Lori and Zach, offered to watch him for a while, so that he would have space to play and run in their yard. We didn't want to see him go, but it was necessary. Lennon really missed him.
Around the first of February, we received a letter in the mail, stating that Jessi's disability payments had been terminated. One of her doctors had not submitted supporting documentation as requested, and they had determined that she was ready to go back to work. She wasn't. Suddenly, our income was cut in half. In a matter of two and a half years, our yearly household income had gone from $125,000 to just under $24,000. It has been there ever since.
Let me tell you, a family of three cannot realistically live on $24,000 a year. You don't make enough to make ends meet, but you make too much to qualify for most government programs. At $1999.00 a month, my family brings in almost $400 a month too much to qualify for food stamps or Section 8 housing. Currently, since my daughter is still 3 years old, we qualify for WIC, which gives us 2 boxes of cereal, a jar of peanut butter, a pound of cheese, one dozen eggs, 3 gallons of 1% milk and about $6.00 of fresh fruit per month.
In may, I received my acceptance letter from Social Security. With it, we received a direct deposit for the "retro pay" for the 25 months of payments that were due to me during my official disability period. Here's what sucks about the retro pay: it all goes back to my Long Term Disability provider, since they have sent me a monthly check for the last two years. I had no choice but to spend some of it. At the time that it came in, our checking account was in the negative. We were three months behind on our car payment, two months past due on our electric bill and a month past due on our car insurance. I also needed to replace my broken cell phone.
Every so often we get lucky. This month is a different story.
In July, I got a letter from the IRS saying that since I was now receiving Social Security benefits, they could levy my disability check to pay for back taxes owed in 2004, when I worked for my parent's business. I called them to explain our financial situation. They agreed to put me in an "indefinite noncollectable status". The status wasn't approved until three days before my direct deposit went through, not enough time for the levy to be stopped for August.
Between the automatic payments that came out of our checking account, the negative balance at the time the deposit came in and the IRS levy, our checking account balance after our monthly deposit came through was $28.00. It's the 29th of the month, and I have no idea where our rent or car payment or electric bill are going to come from.
Being poor sucks. You never get used to it. You can only adjust, and it's one major fucking adjustment.
Lennon is too young to know any better, which is good. I grew up not having anything, and knowing it was because we didn't have any money. We still do what we can to spoil the hell out of her.
In more positive news, we got Ollie back, or as Lennon calls him "Stinky Mr. Pooperton"
Jessi is supposed to start a new job a week from today. There have been a number of delays (She was originally scheduled to start three weeks ago), so hopefully this will work out. I go into surgery on the 19th. I will be lying in bed, recovering, until approximately late January. As such, Lennon will have to be in preschool during the day. That's another $750-800 a month on top of the bills we already can't pay. I'm sure once Jessi goes to work, we'll be able to get back on our feet. It will just take a couple of months. Hopefully everyone can wait that long.
Where's my stimulus package?
That being said, I have decided that every Sunday, I am going to have a post called 'Sunday Confessional'. Each week, I'll write about my medical conditions, or childhood memories or what has been troubling me from the previous week. I promise to be extremely honest and open. I won't hold anything back, although, I'm sure on some subjects I probably should. I know that by the time I have figured all of this out for this week, I probably won't technically post this piece until Monday AM. But, as long as I started it on Sunday, it still theoretically counts as a Sunday post, right?
This week, I have decided to write about the one thing that keeps me up most nights...money. Or, should I say, the lack of it.
Three years ago, when Lennon was born, my wife and I both worked as trainers for a major cell phone company. We were living very comfortably, making roughly $125,000 a year between the two of us. We were able to buy all of the babies furniture and clothing in advance and pay cash. We had a very nice three bedroom apartment. Right after she was born, we purchased a brand new Dodge Grand Caravan minivan with all the options. With our income, it was no sweat to take care of two car payments, along with our other bills. We were doing so well financially, that we would regularly max out our credit cards, then pay them all off in a matter of 60 days. We would do that repeatedly. My credit score was amazing.
In September of 2008, we moved from Albuquerque to Phoenix, to be closer to family. Both of us were able to transfer with work into technical support positions at the same pay. We moved into a beautiful three bedroom house with a garage. It was the perfect house for us. My wife cried the day we moved out, in fact. Things were good. We were home. We had our first Christmas as a family of three, tree and all.
By February of '09, things had taken a decidedly downward turn for me, medically. Wait. Let me back up a minute.
I had my first tic in August of 2006. I had no idea what it was. It was so violent, I thought I was having a seizure. That first night, I didn't know what to do. Jessi (my wife) and I were panicking. She drew a hot bath, and I sat in the bathtub for nearly an hour...shaking. I remember just repeatedly asking her, "What's going on? Should we go to the hospital?" Over the next two and a half years, the tics came more frequently and got progressively worse.
OK. Back to February 2009. My job required me to speak on the phone for 8 hours a day. I worked in a call center. Not only were my tics getting so bad that I was essentially "barking" during my calls, but I was getting so loud, that my coworker's customers could hear me. Here is a video that I shot on webcam in early June of 2009. It should give you an idea of the types of tics that I had at that time.
Add to that my increasing mental distress. People don't call technical support to say that "everything's OK, and you folks are doing a great job". Something is broken and needs to be fixed. Often, the customer on the other end of the line is pissed off. They're pressed for time. They don't want to go through the troubleshooting steps with you. They just want their phone to work NOW. The stress of the situation effected me. Out of an 8 hour work day, I was locking myself in a restroom stall up to 6 hours, on some days. Other days, just the sound of the customer's voice on the other end of the line, would cause me to vomit in my waste basket, often during the first call of the day. That's if I had the courage to make it up the stairs to my desk. On two occasions, the thought of going into work caused me to "soil myself" in the parking lot.
I went out on Short Term Disability in April of 2009. Short Term is a great option, but like Long Term, which kicked in that October, you're paid only 60% of your base pay. You no longer get any shit differential, incentives, bonuses or commissions like you did as a full time employee of the company. So, my pay actually took a cut from about $4800.00, to $1983.00 a month. 40% of what I was taking home.
In June of that year, my wife went out on disability, due to complications that occurred during Lennon's delivery. So, both of us were making about 40% of what we were accustomed to at that point. On June 25th, I was diagnosed with Tourette's Syndrome. The following month, I was diagnosed with Post Traumatic Stress Disorder, PTSD, as a result of years of emotional and physical abuse from my parents and scores of childhood bullies. I immediately was placed on Long Term Disability (which is set to expire this October), and was told to fill out paperwork for Social Security Disability.
Somehow, we managed to keep up most of our bills for the next year. The first thing to get set aside were the credit cards. Then we got behind on the van. We had to voluntarily surrender it last June. Interesting fact: once a vehicle is repossessed and sold at auction, you still owe the difference between the loan amount and sale price. Nice, huh? We moved out of our three bedroom/2000 square ft. house, and into a 600 square ft./1 bedroom apartment to save money. We put Lennon in the bedroom. Jessi and I put our bed in the living room. Very cumbersome, to say the least.
It got to the point were we had no room for our dog, Ollie. Our little apartment was so cramped, he couldn't walk anywhere. Our friends, Lori and Zach, offered to watch him for a while, so that he would have space to play and run in their yard. We didn't want to see him go, but it was necessary. Lennon really missed him.
Around the first of February, we received a letter in the mail, stating that Jessi's disability payments had been terminated. One of her doctors had not submitted supporting documentation as requested, and they had determined that she was ready to go back to work. She wasn't. Suddenly, our income was cut in half. In a matter of two and a half years, our yearly household income had gone from $125,000 to just under $24,000. It has been there ever since.
Let me tell you, a family of three cannot realistically live on $24,000 a year. You don't make enough to make ends meet, but you make too much to qualify for most government programs. At $1999.00 a month, my family brings in almost $400 a month too much to qualify for food stamps or Section 8 housing. Currently, since my daughter is still 3 years old, we qualify for WIC, which gives us 2 boxes of cereal, a jar of peanut butter, a pound of cheese, one dozen eggs, 3 gallons of 1% milk and about $6.00 of fresh fruit per month.
In may, I received my acceptance letter from Social Security. With it, we received a direct deposit for the "retro pay" for the 25 months of payments that were due to me during my official disability period. Here's what sucks about the retro pay: it all goes back to my Long Term Disability provider, since they have sent me a monthly check for the last two years. I had no choice but to spend some of it. At the time that it came in, our checking account was in the negative. We were three months behind on our car payment, two months past due on our electric bill and a month past due on our car insurance. I also needed to replace my broken cell phone.
Every so often we get lucky. This month is a different story.
In July, I got a letter from the IRS saying that since I was now receiving Social Security benefits, they could levy my disability check to pay for back taxes owed in 2004, when I worked for my parent's business. I called them to explain our financial situation. They agreed to put me in an "indefinite noncollectable status". The status wasn't approved until three days before my direct deposit went through, not enough time for the levy to be stopped for August.
Between the automatic payments that came out of our checking account, the negative balance at the time the deposit came in and the IRS levy, our checking account balance after our monthly deposit came through was $28.00. It's the 29th of the month, and I have no idea where our rent or car payment or electric bill are going to come from.
Being poor sucks. You never get used to it. You can only adjust, and it's one major fucking adjustment.
Lennon is too young to know any better, which is good. I grew up not having anything, and knowing it was because we didn't have any money. We still do what we can to spoil the hell out of her.
In more positive news, we got Ollie back, or as Lennon calls him "Stinky Mr. Pooperton"
Jessi is supposed to start a new job a week from today. There have been a number of delays (She was originally scheduled to start three weeks ago), so hopefully this will work out. I go into surgery on the 19th. I will be lying in bed, recovering, until approximately late January. As such, Lennon will have to be in preschool during the day. That's another $750-800 a month on top of the bills we already can't pay. I'm sure once Jessi goes to work, we'll be able to get back on our feet. It will just take a couple of months. Hopefully everyone can wait that long.
Where's my stimulus package?
Thursday, August 25, 2011
Video: Candid Video Of Teenage Girl With Tourette's
The video was taken by Meggan. She's 14. She has Tourette's Syndrome. I can't imagine how difficult high school is for a kid with TS. Her video made me smile...and cry a bit. Take a look:
For clarification, Meggan's mom says that the jokes that her friends make are not mean spirited. She has a particular tic in which she barks, somewhat like a dog. When she does, one of her friends "ribbits" like a frog, to divert attention from Meggan. There's another tic, where Meggan makes a noise like "Wheeeeeeeeeee!". When she does that, her friend smiles and says, "Wow. You're so happy to see me!".
I know from experience that it helps to have someone available to draw attention off of you. The last thing you need is to have a "friend" staring at you, or worse, looking uncomfortable, when everyone in the room is looking at you when you tic.
It takes a lot of courage to talk about this openly to your inner circle, let alone the world. Meggan is a brave young lady.
For clarification, Meggan's mom says that the jokes that her friends make are not mean spirited. She has a particular tic in which she barks, somewhat like a dog. When she does, one of her friends "ribbits" like a frog, to divert attention from Meggan. There's another tic, where Meggan makes a noise like "Wheeeeeeeeeee!". When she does that, her friend smiles and says, "Wow. You're so happy to see me!".
I know from experience that it helps to have someone available to draw attention off of you. The last thing you need is to have a "friend" staring at you, or worse, looking uncomfortable, when everyone in the room is looking at you when you tic.
It takes a lot of courage to talk about this openly to your inner circle, let alone the world. Meggan is a brave young lady.
Saturday, June 25, 2011
My Third "Twitch Day"
On June 25th, 2009, I was diagnosed with Tourette's Syndrome by my neurologist. Coincidentally, it was also the day that Michael Jackson died. I heard the announcement of his death on the radio as we pulled into the parking lot of the doctor's office.
Since then, June 25 has been deemed "Twitch Day". Last year, my wife and I went out to dinner to celebrate. This year, I am recovering from back surgery, watching 'NY Ink'. (Jesus, I need to find something on Netflix.)
It's been a tumultuous two years. A lot of ups and downs. It surely doesn't feel like two years. More like ten. TS....the twitching, the stuttering and jerking and shouting have all become part of who I am. To be honest, I can't picture myself without it anymore.
I am Twitch, as much as I am Adam.
Since then, June 25 has been deemed "Twitch Day". Last year, my wife and I went out to dinner to celebrate. This year, I am recovering from back surgery, watching 'NY Ink'. (Jesus, I need to find something on Netflix.)
It's been a tumultuous two years. A lot of ups and downs. It surely doesn't feel like two years. More like ten. TS....the twitching, the stuttering and jerking and shouting have all become part of who I am. To be honest, I can't picture myself without it anymore.
I am Twitch, as much as I am Adam.
Thursday, February 17, 2011
Watch: Minister With Tourette's - Fascinating
When the media focuses on people with Tourette's Syndrome, they often show children with the condition, because children are the ones that frequently exhibit the most severe tics. It's rare to find someone of my age (35), or even in their late 30s or 40s with moderate to severe tics. This is because Tourette's is commonly diagnosed in adolescence, and by the time someone has reached that age, the condition has been managed for many years with medication. Many times, by then, the person has learned how to disguise their tics. They have turned something that was a vocal tic, into what is now a sniffle or a clearing of the throat. And for some people, Tourette's has simply just gone away with adulthood.
Below are a couple of videos of Matt Ford, a minister from Australia. He has Tourette's Syndrome, and, at his age, it's one of the most severe cases I have seen in a while. I wanted to post these videos of Matt, not for his message, but just to show another side of the condition.
The second video is of Matt giving a sermon in front of a crowd. There are two things that I found interesting. First, he has the same condition I do, in that he repeats himself over and over again with certain words. It felt awkward watching someone else do that. Secondly, I noticed how he disguises his tics. He pretends to speak in tongues, which I find deplorable. He's using a neurological condition that his parishioners do not fully understand, and is acting like it's "god's holy spirit" speaking through him. Unless you really understood Tourette's Syndrome, you would never know. You would be a believer. I also want to have you pay attention to around the 7 minute mark of the clip. At that point, he becomes weak, disoriented, and very fatigued. It's almost as if he's drunk. He's not acting. His Tourette's tics have taken so much energy out of him, it's taken so much energy to try to remain focused on what he was doing, that he is literally collapsing from exhaustion. I have been there many times. It takes that much out of you.
You may not like what he does for a living (I don't), or what he has to say (I don't either), but you have to admire his dedication.
Below are a couple of videos of Matt Ford, a minister from Australia. He has Tourette's Syndrome, and, at his age, it's one of the most severe cases I have seen in a while. I wanted to post these videos of Matt, not for his message, but just to show another side of the condition.
The second video is of Matt giving a sermon in front of a crowd. There are two things that I found interesting. First, he has the same condition I do, in that he repeats himself over and over again with certain words. It felt awkward watching someone else do that. Secondly, I noticed how he disguises his tics. He pretends to speak in tongues, which I find deplorable. He's using a neurological condition that his parishioners do not fully understand, and is acting like it's "god's holy spirit" speaking through him. Unless you really understood Tourette's Syndrome, you would never know. You would be a believer. I also want to have you pay attention to around the 7 minute mark of the clip. At that point, he becomes weak, disoriented, and very fatigued. It's almost as if he's drunk. He's not acting. His Tourette's tics have taken so much energy out of him, it's taken so much energy to try to remain focused on what he was doing, that he is literally collapsing from exhaustion. I have been there many times. It takes that much out of you.
You may not like what he does for a living (I don't), or what he has to say (I don't either), but you have to admire his dedication.
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