Saturday, January 31, 2009

The Psychology of It All

Hi All!

I read Arwyn's post yesterday and it has me thinking. I know that I have posted about similar things in the past but, I just have to say it again.

Spasmodic Dysphonia is such a "silent" disorder in more ways than the obvious. SD causes you to either totally lose your voice or to live with a voice which sounds nothing at all like your "normal" voice. The people around you notice this silencing. They notice that you are not talking as you once did. They notice that you don't talk much unless you have to. They notice that between Botox shots your voice rides that roller coaster of improvement and decline.

However, the part of SD which isn't observable is probably the most difficult to deal with: the psychological impact of SD.

People who don't have SD often minimize the psychological impact of the disorder. After all, it isn't like you are going to die if you have SD. You just have a problem with your voice! Sure, YOU try walking a mile in our shoes and then you will find out what it is really like!

First of all, you have to deal with the fact that you are "broken." No longer do you have a healthy voice. No matter if you have other ailments, the loss of voice hits you hard. After all, how many people ever dream that your VOICE could be taken away from you? The voice is the constant. No one really thinks about it too much but just takes its presence for granted. Suddenly, something is wrong and your voice isn't "right" anymore.

Next, you have to deal with the fact that there is no cure for SD. That means that you are broken and there is no way to "fix" you. In fact, science more of less ignores your problem (SD) because there are not many people who have the disorder (personally, I think 50,000 or more is enough) and the disorder doesn't "significantly impact daily life"(excuse me????).

So - you are "stuck" with this voice problem which has no cure and little research being done to find a cure. It feels like the medical profession has written your problem off as "insignificant." All of this makes you feel isolated. It makes you feel unimportant - at least in a medical sense. This causes a feeling of frustration.

Now, having a disorder which is incurable and which no one seems to know about (oh - did I mention that part? It is frustrating too!), you have to continue, as best as you can, your daily life. Your voice is no longer "normal" so people ask if you are sick ALL THE TIME. They ask if you have allergies ALL THE TIME. They treat you like you are infectious even after you assure them that you don't have a cold. After all, you must be lying because what else would make you sound so horrible?

Day after day you must deal with the same questions over and over and over again. Sometimes, you get the same questions from the SAME PEOPLE who asked them yesterday! These people start to give you "helpful suggestions" about how to take care of your voice. Drink tea with honey and lemon. Gargle with salt water. Drink plenty of water. Use this brand of allergy medicine.

As if any of that will help SD!

Mix in that you are basically unable to speak to people when in a noisy environment. Have you ever tried ordering food in a loud restaurant only to be asked to repeat yourself over and over and over? Then, when you still can't be understood, the waiter starts to treat you like a) you are stupid, b) you are deaf (interesting, don't you think?), or c) you don't exist.

Now you are dependent on other people to help you in social situations.

Finally (for this post - there is much, much more to dealing with SD), consider the telephone. Once an instrument that connected you to the entire world, it is now feared and dreaded. People on the other end can't hear you well enough to carry on a conversation. Every time the phone rings you hope someone else in the household will answer it so you don't have to. You feel isolated because of your inability to talk on the phone.

What does all of this do to a person psychologically? Well, basically, it rips every shred of self-confidence out of your body and throws it on the trash heap. It makes you feel as if you are not worth being heard. It makes you doubt your ability to think because you are unable to communicate your thoughts. It makes once sociable people into virtual hermits. Anxiety about talking in public or on the phone becomes a regular part of life. Frustration about your voice is a constant companion.

Depression creeps in to fill the void left by your self-confidence and it is darn difficult to get rid of!

SD is not just a physical or neurological disorder. It is also a disorder which deeply affects your psychological health in a negative way. Even the strongest of people are dealt with blows which are difficult to recover from.

It isn't a sign of personal weakness. It is a sign of just how horrible SD can be.

Trisha

Voice Update: Still doing pretty well but my allergies are really causing a lot of drainage. The drainage is causing a lot of coughing and sneezing which is causing my muscles to tense up. Not good for optimum voice production. I am continuing my massage and exercises. Onward!

Friday, January 30, 2009

If It Isn't One Thing . . .

Hi All!

Sorry I missed you yesterday but I had a killer migraine and since I also had classes all afternoon, I decided to sleep instead of blog. Luckily, the headache pretty much went away by the third class. The first two were a bit difficult but . . . I survived.

By the way, did you know it is tough to concentrate on sign language when your head hurts?

I am very glad that our hot water tank is now installed and functional. There are still issues with just how warm the water gets but I think that is just because we need to set the heat a bit higher. Hopefully. We will see.

That is one thing that is fixed. However, there is something else that is "hay-wire." Our telephone.

First of all, I should explain that we are old-fashioned. We don't have cell phones. Okay, that isn't exactly true but, we only have cell phones that are pre-paid and no one has our numbers since we only call each other. Also, the phones are not generally on unless we have prearranged it with each other. Is that as clear as mud now?

Okay - so, our phone isn't working. Apparently the ice storm we had here knocked out the line or something. The phone hasn't worked since Tuesday. The phone company says it won't be fixed until tomorrow, at the earliest. What a bummer!

If there was a real emergency, we can use our pre-paid cell phones to call someone but . . . how annoying!

Oh well! If it isn't one thing, it is another!

Trisha

Voice Update: Still doing well. I got the chance to explain SD to some new people yesterday at the college - which reminds me, I need to put more cards in my purse! I didn't do my exercises yesterday since I was asleep pretty much all day and when I wasn't I was still in pain. Not much of an excuse, is it?

Wednesday, January 28, 2009

Cold Water Chronicles (Finale) and Ice, Ice, Baby!

Hi All!

Tuesday -

Well, the hot water dudes, as they will forever be known, finished the installation of the new tank around noon. Not really in time for me to take a shower before class since it would take at least an hour for the water to heat and I would need to leave for class around 12:30 or so! Rats!

The weather, however, came to the rescue. Due to the big ice storm which was being anticipated, my classes were cancelled! Great! I could stay at home and be smelly with Hubby, who had taken the day off from work to be home while the dudes installed the tank.

Once we knew that my classes were cancelled (which ended the big debate about if I went of not in the uncertain weather conditions), it was nap time as we waited for the water to heat! What a day!

After our nap, we cranked up the dishwasher which was full of pretty much every piece of silverware and dinnerware that we own and made a Digiorno pizza. A nice way to end the evening. The hot shower - it will wait until tomorrow morning but I did get nice hot water to wash my face before going to bed!

YEAH! I LOVE THE HOT WATER DUDES!

And now . . . the ice. During the evening yesterday, we got quite a bit of sleet tapping against our windows. That continued until about midnight (I was awake to hear it not tapping anymore). The temperature, which had continued to drop all day, was hitting the upper twenties when we went to bed and so Hubby and I snuggled under the covers and wondered what we would face when we got up in the morning.

Here is what we faced:














Isn't it pretty?
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It was hard to get good pictures of the ice as I was sliding down the yard - yes, the yard! I was in the grass thinking it would be easier to walk there than on the ice . . . wrong! I literally slipped and slid on the grass!
ss
Needless to say, I didn't walk this morning. I don't think I would have made it past my own yard before hitting the sidewalk several times!
ss
What a wonderful, winter wonderland! Of course, Hubby isn't at work because of the ice and we can't go anywhere until some of it melts!
ss
But at least we have hot water!
ss
Trisha
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Voice Update: Still doing well. I am doing my massage like a good girl and I was reading out loud yesterday to exercise my voice since I didn't talk too much during the day. What fun!

Tuesday, January 27, 2009

Cold Water Chronicles (part three)

Hi All!

Monday (continued) -

After a quick sponge bath, I headed off to ASL lab where I spent a good portion of the afternoon. Returning home, Hubby was fast asleep - a sure sign that he was not feeling well.

I made myself a panini and then settled in to watch most of the Chronicles of Narnia which I had on my dvr from before Christmas. It was a nice time as I watched, fast-forwarded through the commercials, and played with the kitties. Soon I began thinking about dinner.

Soon I was whipping up a "skillet meal" which is just all kinds of stuff in a skillet cooking together. Last night it was ground meat (beef and turkey), pasta (mini farfalle), carrots, broccoli, Parmesan cheese, a little cream cheese, a little milk, and seasonings. It ended up being pretty good and was just the ticket for a cold, rainy night (in my mind anyway!).

After dinner I was faced with the growing mountain of dishes which needed to be hand washed. Not having any hot water was a super excuse to not wash them but now the kitchen was beginning to look like I had emptied all my cabinets and left everything on the counter. It was time to wash dishes.

The microwave was soon busy heating water as I organized the washables into categories, which to be washed first, second, etc. I was trying to be strategic so that I could optimize the hot water. As the water was heated I slowly began washing - small thing first since the amount of water was minimal and then larger things as I added more warm water.

It was wash dishes, rinse (in cold water), get more warm water from the microwave, wash dishes, rinse in cold water, get more warm water from the microwave. What fun! Luckily, Hubby felt well enough to help out by drying the multitudes of dishes I washed. I did say that I had a mountain of dishes to wash, right?

After dinner it was time for the next challenge - washing hair. Both Hubby and I felt a bit . . . well, greasy . . . because we hadn't washed our hair since Friday morning. It was more microwaved water and trips to and from the bathroom for the non-wet person. It wasn't the best thing ever but it seemed to work and we both now have clean hair!

What a relief!

Tuesday -

It is cold and rainy here with the threat of an ice storm. The threat has paralysed the metro-plex with multiple school closings (I haven't seen that my college is closed yet) and all kinds of special weather reports. Ice in Texas is a serious thing because we don't have salt trucks (we DO have sand trucks which help not that much) and we have miles and miles of soaring overpasses. Also, we have a multitude of people who will slow to a crawl in rain but speed up to insane speeds on ice. Go figure.

Anyway - as Hubby and I went to bed last night we were a little worried that the threat of ice would keep the water heater dudes from coming this morning. That would mean even MORE sponge baths and hair washing ordeals! It took me a while to doze off while worrying about if I would get a nice hot shower before going to class or not. Of course, I didn't think about the class possibly being canceled due to the ice.

I decided not to walk this morning when I woke up to 33 degree temps and rain. I know - I am a wimp but sleeping in felt soooo good! I slept for an additional hour - heaven! While I was dozing, the water heater dudes called Hubby and said they were on their way! Hooray!

When I got up, the dudes were at the house and were ready to rock and roll. They had to get a permit from the city (huh? The other guys who installed this heater didn't get a permit!) and promised me a hot shower shortly! WOW! My heroes!

As I am typing this I can hear clunking and banging and sawing (??) up in the attic. I am thrilled!

Trisha

Voice Update: Still doing well. My massage is getting done and so are the exercises. My only question - why am I so darn tired???

Monday, January 26, 2009

Cold Water Chronicles (Part Two), etc.

Hi All!

Monday -

I just swept into my house on a gust of cold air from my morning walk. Peeling off a coat, scarf, mittens, and earmuffs, I headed into the bedroom where Hubby, sick with a head cold and stomach issues, is still in bed. As I continue to peel layers, sweatshirt, turtleneck, jeans, thermals, Hubby informs me that he has good new and bad news.

Uh-oh!

It turns out that the plumber had called and they had found a replacement tank for us (that is the good news). However, they won't be able to get the tank until tomorrow morning (that, in case you can't tell, is the bad news!). Darn, darn, darn!

As I stood there looking at Hubby all sweaty from my walk and knowing that I would sweat more during my weight routine, all I could think of was, "Great! Now I will really stink!"

I just hope that the tank is up and running so I can shower tomorrow before going to class!

To be continued . . .

The Etc. part:

Yesterday I made a trip to the grocery store. This is something that I normally do on Mondays but we had NO food in the house other than canned staples and frozen meet so, off I went! Yeah! Hubby was gone last week and so I didn't go to the store to buy stuff for only me. That means that I had a LOT of shopping to do! We were out of almost everything that we normally eat. I absolutely hate grocery shopping when you have to get "everything!" My cart filled up and then, at the check-out, the bill added up fast! At least Hubby carried everything in from the car!

Lately I have been reading magazines. Lots of magazines. They seem to pile up as I am immersed in my current book and every once in a while I need to put off the book pile to take care of the magazines.

Smithsonian is one of my favorite magazines. My friend, D, gives me her Smithsonians when she is done with them (hey - doing my part for the planet) and I devour them. They are full of such interesting stuff. The two I read yesterday both had articles about archeology in Turkey. Cool stuff.

After the Smithsonians I will hit my National Geographics. I love the information in the magazines but they just seem to pile up quickly.

What is piling up around your house?

Trisha

Voice Update: I did my massage and exercises yesterday despite the water heater "drama." My voice is doing well. I must keep on keepin' on with my exercises though!

Sunday, January 25, 2009

Cold Water Chronicles

Hi All!

Friday -

Something seems up with the water. I was washing my face before going to bed and . . . well, something just seemed wrong. It ALWAYS takes forever and a day to get hot water but tonight it seemed to take a bit longer. How frustrating! I really want instant hot water! Maybe I should talk to Hubby again about getting a small, tank-less, hot water heater for under my bathroom sink. Of course, the last time that we looked, they were a bit too expensive. Rats! Cold water just doesn't work for me!

Saturday -

*Yawn* I feel good. I slept in as long as the kitties would allow and then leisurely read the comics while enjoying a nice breakfast. SCRATCH THAT!

No - I woke up with the alarm buzzing like a swarm of angry bees and with both cats crawling around on my body. This, of course, hampered my ability to reach the alarm clock to silence the bees. Hubby woke up and mumbled something about people waking him up too early on a Saturday morning. Finally, the bees were silenced, the cats vacated the bed, and I was able to drag myself up to get dressed to walk. As I was pulling on my jeans I wandered to Hubby's side of the bed to check the temperature on the weather station receiver. I had to lean close to decipher the numbers in the near darkness of the bedroom. I squinted, rubbed my eyes, and then looked again. Yes. It really did say 32 degrees!

Back to my armoire to find my thermals. I peeled off my jeans, tugged on the thermals, grabbed a thick turtleneck and my favorite over sized sweatshirt. I was almost to the kitchen before I remembered that socks might be a nice thing to wear on a cold morning like this. Turning around swiftly, I barely avoided a collision with the cats who were following me around the house. I grabbed some socks and then completed the voyage to the kitchen. Stopping for a minute to pull my socks onto already chilled feet, I then took care of kitty business. Food, water, litter box. Gulping water and morning pills, I scurried into the office to nab my iPod and then to the kitchen bar to find my keys.

With everything I needed, including a new Kleenex in my pocket, I plopped on the floor, put on my shoes, got up and put on about twelve layers of coats, scarves, mittens, hats, and ear muffs. I was out the door running - well, not quite running but walking briskly.

After the walk, which was abbreviated due to the possible freezer burn on my cheeks, I reversed the insulation process and stripped down to my thermals and turtleneck to do my weights. Huffing and puffing through the set (yes, I am back down to only one set these days), I finished and headed to the computer.

After turning on the computer I headed to the bathroom for a pit stop as the computer booted. I turned on the hot water full blast to wash my hands and got a nice, strong stream of ice-cold water. Okay, so the hot water didn't make it to this bathroom in time to warm my hands. Thinking nothing of it I continued my morning routine of talking to my mom on IM while blogging.

Because an allergy headache was dogging my steps, I returned to bed after my computer time and slept for a couple of warm, blissful hours.

The water wasn't an issue until Hubby and I had finished dinner. Trying to be good I immediately turned on the hot water to fill the sink so I could wash the pots and pans. Cold water. Hmmmm. It seemed to be taking longer than normal. I let the water run for five minutes as I cleared the table and puttered around the kitchen. Still ice-cold.

Finally, I had to inform Hubby that something was up. After hearing my report Hubby did his own investigation which involved running water in every bathroom and in the kitchen to see if he could get hot water. Zilch.

We decided we had a problem. By this time, it was time for bed so I heated some water in the microwave to wash my face, gave myself a quick "sponge" bath, and crawled under the covers.

Sunday-

I think the cats know something is up. They let me sleep until 7:00 A.M. Getting up, wrapping myself in my cozy robe, and avoiding the kitties twining 'neath my feet, I headed to the kitchen. First I took the morning meds and then went out front to collect the paper.

Thinking that the hot water issue may have resolved itself during the night, I tried out the water situation. Lots and lots of cold and colder water. Absolutely no hot or even mildly warm water. Rats!

Taking care of the kitty business, I headed back to bed. In the faint light I read an article in Reader's Digest as I settled down again into slumber.

The next thing I know Hubby is walking into the room telling me that the hot water tank is fried.

"Literally?" I asked.

"Yep." he replied.

"Not good." I mumbled before falling back asleep.

After much debate Hubby called a local plumber and had him come out (yes, on a Sunday!) to check out the tank.

"There is water everywhere." Doug, the plumber said as he strode through the house to the front door. "That is never good."

He left to call his boss from his truck and Hubby told me that there was/is apparently a leak in the tank and that the water from the leak had met up with the electrical parts of the tank and resulted in a big, old "melt-down." Thank goodness Hubby had enough sense to turn off the breaker controlling the electricity to the water heater and to unplug the heater from the outlet just to be safe.

Doug came back in the house and immediately headed out to the garage to access the water heater again (which, by the way is in our attic!). He traveled in and out about three or four more times before telling us that his company could come out tomorrow to replace the tank. The tank, it seems, will be covered by warranty since it is way less than a year old. The labor - well, that is our responsibility.

In the meantime there is no hot water and I am not looking forward to another microwave sponge bath!

I don't smell, do I?

Trisha

Voice Update: My voice is doing well. I did two of the three sets of exercises yesterday. Such fun!

Saturday, January 24, 2009

Darn That Mountain Cedar!

Hi All!

Ten years ago, when Hubby and I moved to Texas, I accused him of moving us to Hell. Why? Well, we moved in September and the temperatures were still in the 100s! Compared to mild Ohio weather, that seemed like Hell to someone who doesn't like heat (me). Little did I know that there was more to come.

Hubby has always had allergies. In Ohio they were annoying but not really too bad. Once we moved to Texas, however, they began to increase in intensity and duration, much to his disgust. Me - I had never experienced allergies in Ohio. After about a year in Texas I noticed that I got a "cold" every year around the same time. As time went on these "colds" got worse each year. Finally, I talked to a doctor and was informed that I didn't have a cold, I had allergies.

Allergies???? I didn't know what to do with that information since I had never experienced allergies before. With Hubby's help I found some meds that made my yearly allergy experience bearable. Then we started to ponder just what I could be allergic to.

On the news here they always give you a pollen and mold count. I didn't think that was odd at all because every channel did it. Hubby and I started paying attention and narrowed my irritants down to . . . Mountain Cedar. Each time Mountain Cedar numbers started to rise I got a stuffed nose. Each and every time. It didn't take a rocket scientist to figure out what was the cause of my suffering.

Well, this year has seen my allergies at the worst that they have ever been. My nose clogs, I sneeze (which, by the way, is messing with my throat and my voice), I have drainage (lovely to talk about, isn't it?) and coughing related to the drainage. What fun!

In the past three days I have added a new symptom to my allergy arsenal - headaches. I wake up with a headache. I end the day with a headache. It is not a good thing. I know the headaches are allergy related and not migraine breeders (thank goodness) because of their location and the fact that when I take allergy meds again, they go away. Each time the meds start to wear off - headache!

This year I found out some very interesting facts about the "hell" Hubby and I live in. Not only are the temps HOT in the summer but, apparently, the area is at a convergence of five (count them - FIVE) major "allergy zones." Allergens from five different "high concentration" areas blow.drift, waft, migrate to exactly the area where we live. GREAT! This explains why Hubby's allergies are a billion times worse here than in Ohio AND why I have allergies now when I never did before.

My problem is that a major concentration of Mountain Cedar, located in the Austin area, always sends pollen and allergens north during this time of the year. The problem goes as far north as northern Oklahoma. Super!

I think I will just buy stock in allergy meds and Kleenex.

Trisha

Voice Update: Not too bad considering all the allergy junk going on. Each time I sneeze, it hurts my throat and my voice is a bit rough for a few minutes. Not good. I didn't do my massage yesterday - I don't really know why. I think I was just tired and distracted (I spent about 3 hours in the ASL lab). I am determined not to forget today!