Aftermath and retail work

Even though I feel pretty yucky, I probably won't get around to actually doing a little bit of work yet, so I'll write this up :).

So I quit the job at the call center at the end of May 2003. Because I quit my job, I lost my insurance, and then I couldn't seek further treatment. Looking at my reports later from the doctor showed that I was "noncompliant" but I really just couldn't afford to go. My boyfriend picked up the slack in the meantime. That led to a bit of credit card debt that we still haven't gotten rid of.

I applied at a few places and even had a HR headhunter find me. I made the mistake of being completely honest with what happened at my last job, so I wasn't hired at any of those places. Although I despised working through a temp agency, I felt I had no choice, and I once again joined up with one of them. The problem was, I was making decent money at the call center, and I would have liked to have made that again. And my boss through the temp agency was lazy. She never bothered to even try to find me something, so I was jobless from the end of May to the beginning of August. When I did finally get a job through them, I was making about $3 less than the call center, but it was better than nothing.

The job was where I was typing up insurance claim information. It was a government job, and it was funny because just down the street you could work at a private insurance company where you could make even more than I did at the call center. As such, people really didn't like to stay at the job I was at for long, and really only did because of the benefits. Often, people would work through the temp agency and be hired on later through the company itself. I specifically handled disabilities, so I would type in the name, what the diagnosis was, what kind of aid they were asking for (a wheelchair, prosthetic limb, etc). One time I had a guy asking for a penis pump "to save his marriage." I didn't really have to talk unless I had a question, and overall the job was ok, except for one major reason--my boyfriend had a girl who used to stalk him that worked there. I didn't know this at first, but when I was talking to my him about this girl and how obnoxious I thought she was, something clicked and he realized who I was talking about. Luckily, a family friend said she had an opening at General Nutrition Center (GNC) and I jumped on the job. When I told everyone I was quitting, I explained that I found out that my husband had a girl who stalked him that worked there, and I didn't think it was a good situation to be in. My boss glanced sideways at the girl, and I laughed and replied yes. Everyone understood.

September was when I started at GNC. My boss understood my voice problems, and she made sure that I only used the phone when I absolutely needed to. We were supposed to call out to Gold Card customers to remind them of Gold Card week, but she did all of that herself instead. Subsequent bosses would ignore this.

At GNC, we had many elderly people come in, and many were hard of hearing. Sometimes they would get mad at me if I had a particularly bad voice day and I was talking in a whisper. There wasn't much I could do at this point, because I didn't know what I had. A couple of other customers would whisper back to me when I started whispering, and then laugh afterwards. They didn't think it was so funny when I explained that I had some sort of voice condition. The job itself was easy enough, but dealing with the public when you aren't sure of when you will have a voice is hard.

I went through a couple of management changes because both my boss and I got pregnant while at the job, essentially at the same time, and my boss left on maternity leave for quite a while, where I came back after 6 weeks. It was while I was pregnant that I got married and got under my husband's insurance. During this entire time, though, I was more focused on getting the care for my baby than finding out what my voice problem was. My subsequent bosses didn't care that I was hired with the intent of not really using the phone, so any time I had to make calls out to Gold Card customers, I lost my voice. To this day, I still will lose my voice if I talk a lot.

I spent nearly two years working for GNC, but that was including maternity time off. I quit GNC after finding a decent work-at-home opportunity and because I didn't want to deal with the regional manager anymore, our commission rates went down, and the store was turning into almost all sport supplements instead of a good mix of herbs and sports, and I really couldn't care less about sports. My new job was writing and critiquing online personal ads from home, or anywhere I could access my account. I joined up in November of 2004, just shortly after I had my first daughter, and I actually got work in December of 2004. I quit GNC in August of 2005. At that point, I was making quite a bit more as a writer than when I was working at GNC, where I was essentially making minimum wage most days. It wasn't that I couldn't sell, as I had been proven to sell in the past. As I said, they changed the commission on us, and a lot of business had dropped off over time. Of course, shortly after I quit, the city's minimum wage requirement was raised by nearly two dollars.

Next: Discovering Spasmodic Dysphonia.

Sorry about the lack of updates

I've gotten hit hard with a cold this week, so I've been pretty miserable. Of course, with this cold that means that my voice has been nonexistent much of the time. Lots of fun when you have to deal with house loan drama and make a lot of phone calls.

It's always interesting that when I lose my voice, my toddler asks me "what happened to your voices?" She doesn't quite understand that it's just voice and not voices yet :). Anyway, it's very difficult to explain to a 3-year-old that I just can't talk. I tell her that my voice is gone, and that it's just a voice problem I have. Sometimes she'll whisper back. I'm much more forgiving of a child whispering back to me than an adult who whispers back to me and laughs about it. I'll go into that later with my retail post.

Emotions and fallout

With the last post, I mostly just went over the facts, but not really how I was feeling emotionally.

When I first got symptoms, there was some confusion. I never had symptoms like that before. I had sore throats in the past, but not anything like this.

It ended up progressing to fear and worry for a number of reasons. I didn't know what was wrong, and didn't know for nearly three years. I was afraid that I was going to be fired, especially because of the company being in a poor state financially. I was worried about how I was going to pay for my apartment and utilities when I was only getting in half of my hours and having a lot of money go towards doctor visits.

Then I felt sad, and upset, and just defeated. My coworkers were horrible to me. A couple that supported me I still keep in contact with, but most were just outright mean. What makes them think they have the right to throw out stuff of mine? I never did anything to them. I was a bit of a loner and not really a team player, but I wasn't outright mean to anybody. I didn't really say anything about anyone else. The coworkers I disliked were the ones that were the meanest about things, so I guess the feeling was mutual. My aunt, who also worked in the office, said that I quit because of a couple of the coworkers, and I guess my boss felt really awful about it, but I don't see how she couldn't have figured out that I had to break at some point with how terrible they were to me.

And what's with my boss just rolling over and letting them treat me like that, and actually agreeing with some things? Why would she think I'd want to cut back my working hours by half? She knew my roommate was deployed and I would have to pay for everything myself for a while. I wasn't a bad employee. As I said, I had used up some sick time, but never went over my alloted p.t.o. hours. I had helped out multiple times for company-sponsored events, and since I knew computers better than my coworkers, I made various guides to help everyone out. My aunt blames things mostly on my boss's boss, who my aunt always had problems with. I think my boss just went with the pack and didn't want to stand up for me, which, to me, is just as bad as being one of the instigators.

Eventually, being upset led to anger, an emotion that I'm still not entirely out of today. It's not that I'm not comfortable with or accept where I am today, but unfortunately, I'm one to hold a grudge. My aunt took me around the office once after I had my first child, and I made it a point to let them know that I still had the symptoms (this would have been 2005). Of course, they were a bit surprised, but I hope that they realized that they made a mistake.

To jump ahead a bit, my dad, who can be a little sue-happy, I think, threatened the company with a lawsuit. As SD can be considered a disability, he figured that he could scare the company a bit, as discrimination against someone with a disability is against the Americans with Disabilities Act. I argued that I didn't know it could be considered a disability at the time, and neither did they, so I wasn't sure how well things would go over. Regardless, the threats didn't work too well, as the company had been bought out by a different one, and I'm sure the new company didn't feel they were responsible for something that happened years earlier. I'll go into my thoughts regarding SD being a disability later.

One day recently when my aunt was calling for some glass from a different auto glass company, my aunt caught my old boss on the phone. That stirred up some bad feelings, and that's when my aunt blamed stuff on my boss's boss.

Next up: the joys of working retail when you don't have a voice.

The beginning

I do have a video for everyone! I made it yesterday, but I want to edit it first. I'll try to put it up over the weekend. Right now I'm pretty wiped out. See, we're moving in a couple of months, and so I have to go through the garage, which had many things that hadn't been touched since we moved four years ago. It'll all be worth it,though, because we're getting our first house :). But let's move onto the story.

In spring 2003, I was working at a call center at the corporate office for a local auto glass repair and replacement chain. I had been working there since May of 2002. Earlier in the year I had gotten bronchitis, and I remembered my boss not really believing it till I brought in the doctor note. I had taken some time off over the course of the past year, of course, and mostly that time was used for sick days or personal days that came up unexpectedly, but I never used up all of my p.t.o. I think it was sort of a case of "what, another thing?" because the previous fall I had ovarian cysts, and I recently had taken off a day when I had to rush my rabbit to the vet, who did, unfortunately, pass away later that day. Still, I was a hard worker, and I was usually a top performer, even being name a top CSR for the month of March.

Things were a little rough at that time. Because the company was facing financial hardship, they started laying off people. One of my coworkers had been fired. My roommate was just deployed to Iraq, so I had to replace furniture and pay for everything at the apartment myself for a short time before my boyfriend (now husband) could move in and help me out.

April 3, 2003. I put this down as the start date in my LiveJournal, but I'm not sure if that's accurate. I had remembered that I was quite happy that my voice went out over the weekend so I could rest and get better by the next week.

April 5, 2003. This date sticks out very well in my head. It was a Saturday, just like it was this year. I was just starting a four day weekend that extended into Tuesday, as that was my 22nd birthday. One morning, my boyfriend and I woke up, and we were talking, and my voice...just kind of stopped working. It was fine at first, but then it started to crack a little bit, and I started to speak in a whisper. I thought that was kind of strange, but I thought maybe resting my voice would help. I think it was that Sunday when I had my birthday party. I have a thing for pirates, and that was the theme of the party, which was before (albeit just slightly) the first Pirates of the Caribbean movie came out. We had Long John Silver's on pirate-themed plates and we watched pirate-themed movies.

At the party, I had to explain to my family and friends about my voice and how I didn't really want to talk at the time. As I said before, my friend Shane recommended lemon tea, which he still does to this day. But this felt different. My throat didn't hurt like it did when I had a sore throat from a virus in the past. It didn't even hurt like it does like when you scream a lot at a concert. There was some pain after trying to force myself to talk in a whisper, but the problem itself was not painful.

I went back to work, and it took very little time for me to progress from talking normally on the phone to talking in a whisper. A visit to urgent care, or at the very least, an urgent clinic visit, was done, and it was determined that had just overused my voice. I thought this was strange, as it wasn't slowly going away over the course of time, and I really had no problems speaking just a few days prior. I just woke up and it was gone.

As time went on, though, it was soon realized that I did not have something that could be cured by resting alone. I had various tests done by several physicians, and I went to a Dean Care speech therapist, who started me on some exercises. He assured me that these exercises would help and that I could get over this condition. I saw him just two or three times total during this time period.

Work was getting very nasty. Coworkers of mine were saying I was making up the voice thing to get out of work. Why they thought this, I have no idea, because why would I want to work less when I have to pay double for things? Eventually, my hours were cut down to about half in the call center, and then I worked in the mailroom for a while along with some odd jobs, mostly data entry work. The mailroom was nice because I didn't really have to talk to anybody, and it was relatively low stress. I remember having a meeting with my boss and crying, saying I didn't understand why people were saying these things about me. She said that they've never had anyone experience that before, so it was hard for them to understand what was going on. She was basically making excuses for their catty behavior.

Even though I was just filling in with the mailroom, I wanted to work there. Of course, the day I was going to see if I could just switch there was the same day that they hired a temp.

Things proceeded to get even worse with my coworkers. I could hear them saying things about me while I was on the phone. I had to constantly bring in doctor's notes on my status, and I was seeing doctors at least weekly for the aforementioned tests and speech therapy. At one point, my boss's boss pulled a huge fit about not being able to have some things faxed to her. This was the beginning of HIPAA officially being in effect, and so they couldn't send health documents to open printers or faxes.

My coworkers were horrible, my hours were cut back. I finally quit at the end of May 2003 after my boss said that she could not give me five minutes to rest my voice and do exercises every hour. I remember that one day I had been cleaning up the stuff around my cubicle, but I was not officially gone yet. The next day when I came in I found the rest of my stuff in the trash.


That's it for now. Look for part 2 to focus more on my personal feelings about this situation. I'll see about getting some media up, too.

A minor change

Just updating quick to say if you look at my posts and think, "Oh, but didn't you say you found out you had SD in 2005? It says 2006 now." Well, it did, but I realized I totally put down the wrong year. I found out I had it January 5th-6th, 2006, and wasn't diagnosed with it till that March. So I went nearly three years without a proper diagnosis, which isn't great, but better than what many others have faced.

So, who am I?

Who am I, and why have I made this blog?

I'm Arwyn, and I just recently turned 27 years old. I've been married since 2004 and have two daughters, ages 3 and 1.

I also have a disorder called spasmodic dysphonia, specifically the abductor type, which I have had since 2003 but was not diagnosed with until 2006. While I have this disorder, I am not THE disorder. It does not define who I am, although it does make things a little bit difficult.

The purpose of this blog is so others with spasmodic dysphonia, young or old, the recently diagnosed or those who have had it for years, can see my experiences. Perhaps the reader could relate, or maybe find some useful information.

And what's spasmodic dysphonia?

If you have it, you probably know the basics. But for those readers who don't, from the Wikipedia page:

Spasmodic dysphonia (or laryngeal dystonia) is a voice disorder characterized by involuntary movements of one or more muscles of the larynx (vocal folds or voice box) during speech.[1] Spasmodic dysphonia is often referred to as SD.

My specific type, abductor, involves the vocal cords being pulled apart, which leaves me talking in a breathy, whispery voice. Adductor type, the more common of the two, involves the vocal cords stiffening and being slammed together, and the person talks in a strained or strangled voice. A person can also be a mixed type, having both qualities. Often, singing and laughing aren't affected, and I can definitely say this from experience. Sometimes I will make a squawking sound so my husband knows I have something to say :P.

Spasmodic dysphonia is thought to be neurological, so something related to the brain and nerves versus a structural problem with the larynx. SD typically affects people around 30-50, but as you can see, I've had it since my early 20s (I got it at the age of 21, three days before my 22nd birthday) and one of my doctors said he treated someone as young as 17, I believe. It is also believed to affect roughly 50,000 people, so it's quite rare. Of that number, less than 10% are afflicted with abductor type--so roughly 5,000 people.

Where the confusion lies, though, is what causes spasmodic dysphonia. When I was diagnosed in 2006, one of my doctors stated that some believe it may be related to bronchitis. I did, in fact, have bronchitis shortly before I got spasmodic dysphonia. Some think it may be hereditary. My parents don't have it, nor did my grandparents, so who knows. I have a cousin who claimed that she went through something similar in high school, but she took voice therapy and it went away. In her case, I think it's probably related more to a muscle tension dysphonia, as she does not have problems today, and it sounds like it was a one-time deal.

Is there a cure?

None yet, but there are ways to treat such as voice therapy and Botox. I've never tried Botox, and I don't care to. Voice therapy can work wonders. I can speak in a higher or lower voice and my voice will be clearer, too, but I only use that for extreme circumstances when I can't really do exercises on the spot. You can also see if you can get a voice amplifier, which isn't a way to treat, but a way you can manage a bit better.

Despite what my friend Shane seems to think, lemon tea won't do a thing. He recommends it every time he's around when my voice goes out on me.

Next post: How everything began, and I'll post some sound clips and/or videos.

An introduction

I've been living with abductor type spasmodic dysphonia since 2003. However, I never really kept a separate blog for my experience dealing with it. I've been messaged multiple times on my LiveJournal from others who have spasmodic dysphonia, so I thought it was time to give my condition its own spotlight.

In the days, weeks, months ahead--whenever I feel like it, anyway, I'll go through my old LiveJournal posts and post relevant information here. I'll also continue to update with current happenings related to the condition.

Having just passed my five year anniversary of my getting spasmodic dysphonia, I can tell those who have been newly diagnosed with it or who feel trapped with it this: You can live a productive life with spasmodic dysphonia. I believe that depression and confusion is part of it at first--believe me, I've been there--but there are resources to help you. Be sure to do your vocal exercises, and if you are struggling with finding a job that will accommodate you, see what your local Department of Vocational Rehabilitation (your state should have a similar department) can do.