Hi All!
Recently, someone posted on my Facebook wall that I need to post updates about my life more often. Really?
Is my life that interesting that people want/need to know about what I am doing?
This is the second time in so many weeks that I have though about my life and if it is boring.
Last week, we had an assignment in class to tell about what we did over the past week. While I did a lot of little stuff, it wasn't earth-shattering or even very important. In fact, I might dare to venture that it was really quite boring.
Apparently, most of us lead boring lives. As the class started to present information about our week, the majority of students began their discourse with some variation of "my week was really boring."
Really?
I would think that people have more interesting lives.
I guess I am wrong.
What about you? Is your life boring?
Trisha
Thursday, February 16, 2012
Thursday, February 2, 2012
To Respond or To Not Respond
Hi All!
It has been quite a while since I posted anything about my "dance" with Spasmodic Dysphonia. Mainly this is because SD has become a mostly silent partner in the dance that is my life. However, I also have become much quieter about my SD because of bad experiences with other people who have the disorder.
A quick recap for those who might not know (as if anyone new ever reads my blog!!). Spasmodic Dysphonia is a neurological disorder which causes the muscles controlling the vocal cords to spasm uncontrollably. This makes speaking VERY difficult and, in some cases, makes breathing difficult as well. There is no known cure for SD just as the cause of the disorder is unknown. Since the disorder is relatively rare (approximately 50,000 cases in North America) and since it does not kill its victims (only makes them speechless), there is very little research being done on the disorder so scientists (and doctors) are pretty much in the dark about Spasmodic Dysphonia, its cause, its diagnosis, and possible cures. Currently, the only medically approved treatment for SD is the injection of Botox into the spasming muscles. This must be redone every 3-6 months since the effects of Botox wears off. Speech therapy is also helpful to some people with the disorder.
For me, personally, speech therapy was the key to me being able to speak almost normally again. Being able to speak almost normally is the primary reason I have bad experiences with other people with SD.
Other people with SD listen to me speak and immediately decide that I can't possible have SD.
They make this decision without really talking to me much. They don't check my medical records or talk to the people who diagnosed me. They don't listen to recordings of me taken when I was first diagnosed or to recordings taken during my years of speech therapy. They simply make the decision. And then they tell others what they have decided.
It doesn't seem like decisions made by people would be much of a problem but . . . it is amazing how these decisions cause grief.
For example, early in my blogging life I wrote a lot about my experiences with SD. I wrote as a way to share the SD experience and to, hopefully, spread awareness for the disorder. These blogs are still out there for people to read. And, strangely, people DO read them once in a while.
That is where those decisions come into play.
About a month or two ago, I got a comment on one of those old blog posts about SD.
The comment was long and very, very angry. It was from a woman (I am assuming) who blasted me for being a fake. She came straight out and told me that I should be ashamed of myself for "pretending to have such a devastating disorder" and then "miraculously being cured."
Pretending. Cured.
The comment went on and on and dripped venom with each word, each phrase, and each paragraph.
The commenter let me know that she (again - just an assumption as to the sex of the author) had spoken to members of the NSDA board (NSDA is the National Spasmodic Dysphonia Association) and they had told her that I really didn't have SD but had MTD (Muscle Tension Dysphonia) instead. MTD can mimic the symptoms of SD. In MTD the muscles in the neck and throat tighten up to the point where they restrict the vocal cords and cause dysphonia. It was said that I have MTD instead of SD because speech therapy had "cured" me and if I really had SD, that would not have happened.
Interesting how these people, none of whom have a medical degree to my knowledge and none of whom have ever spoken or consulted with my doctors and/ or speech therapist, made the decision that I didn't have SD.
Interesting how the commenter took the word of these non-medically trained people as gospel and then decided that I was lying about having SD for some nefarious purpose.
Interesting how the commenter decided to let me know and to "Shame" me into telling the truth.
When I got this comment, I read it and then promptly deleted it.
I didn't respond in any way until today. Why? Frankly, it is because I know the truth. My family knows the truth. My friends know the truth. That is all that really matters to me. I am tired of people doubting me because my voice is "too good." They don't know the hours and hours and hours of work I put into my therapy. They don't know all of the different things I tried. They don't know my experience because they weren't there. I severed my association with the NSDA because I was tired of defending myself to people who made decisions without finding out the truth.
So, I didn't respond.
However, I spoke to my mother last night about the comment (I hadn't told her about it previously and it came up during a discussion about my speech therapist). She was angry and said I should respond.
That made me wonder. By responding, do I validate the commenter? By responding do I continue to ignorance?
By NOT responding, do I validate the commenter? By NOT responding does the commenter think she has "hit upon the truth?"
To Respond or to Not Respond. That is the real question.
Trisha
It has been quite a while since I posted anything about my "dance" with Spasmodic Dysphonia. Mainly this is because SD has become a mostly silent partner in the dance that is my life. However, I also have become much quieter about my SD because of bad experiences with other people who have the disorder.
A quick recap for those who might not know (as if anyone new ever reads my blog!!). Spasmodic Dysphonia is a neurological disorder which causes the muscles controlling the vocal cords to spasm uncontrollably. This makes speaking VERY difficult and, in some cases, makes breathing difficult as well. There is no known cure for SD just as the cause of the disorder is unknown. Since the disorder is relatively rare (approximately 50,000 cases in North America) and since it does not kill its victims (only makes them speechless), there is very little research being done on the disorder so scientists (and doctors) are pretty much in the dark about Spasmodic Dysphonia, its cause, its diagnosis, and possible cures. Currently, the only medically approved treatment for SD is the injection of Botox into the spasming muscles. This must be redone every 3-6 months since the effects of Botox wears off. Speech therapy is also helpful to some people with the disorder.
For me, personally, speech therapy was the key to me being able to speak almost normally again. Being able to speak almost normally is the primary reason I have bad experiences with other people with SD.
Other people with SD listen to me speak and immediately decide that I can't possible have SD.
They make this decision without really talking to me much. They don't check my medical records or talk to the people who diagnosed me. They don't listen to recordings of me taken when I was first diagnosed or to recordings taken during my years of speech therapy. They simply make the decision. And then they tell others what they have decided.
It doesn't seem like decisions made by people would be much of a problem but . . . it is amazing how these decisions cause grief.
For example, early in my blogging life I wrote a lot about my experiences with SD. I wrote as a way to share the SD experience and to, hopefully, spread awareness for the disorder. These blogs are still out there for people to read. And, strangely, people DO read them once in a while.
That is where those decisions come into play.
About a month or two ago, I got a comment on one of those old blog posts about SD.
The comment was long and very, very angry. It was from a woman (I am assuming) who blasted me for being a fake. She came straight out and told me that I should be ashamed of myself for "pretending to have such a devastating disorder" and then "miraculously being cured."
Pretending. Cured.
The comment went on and on and dripped venom with each word, each phrase, and each paragraph.
The commenter let me know that she (again - just an assumption as to the sex of the author) had spoken to members of the NSDA board (NSDA is the National Spasmodic Dysphonia Association) and they had told her that I really didn't have SD but had MTD (Muscle Tension Dysphonia) instead. MTD can mimic the symptoms of SD. In MTD the muscles in the neck and throat tighten up to the point where they restrict the vocal cords and cause dysphonia. It was said that I have MTD instead of SD because speech therapy had "cured" me and if I really had SD, that would not have happened.
Interesting how these people, none of whom have a medical degree to my knowledge and none of whom have ever spoken or consulted with my doctors and/ or speech therapist, made the decision that I didn't have SD.
Interesting how the commenter took the word of these non-medically trained people as gospel and then decided that I was lying about having SD for some nefarious purpose.
Interesting how the commenter decided to let me know and to "Shame" me into telling the truth.
When I got this comment, I read it and then promptly deleted it.
I didn't respond in any way until today. Why? Frankly, it is because I know the truth. My family knows the truth. My friends know the truth. That is all that really matters to me. I am tired of people doubting me because my voice is "too good." They don't know the hours and hours and hours of work I put into my therapy. They don't know all of the different things I tried. They don't know my experience because they weren't there. I severed my association with the NSDA because I was tired of defending myself to people who made decisions without finding out the truth.
So, I didn't respond.
However, I spoke to my mother last night about the comment (I hadn't told her about it previously and it came up during a discussion about my speech therapist). She was angry and said I should respond.
That made me wonder. By responding, do I validate the commenter? By responding do I continue to ignorance?
By NOT responding, do I validate the commenter? By NOT responding does the commenter think she has "hit upon the truth?"
To Respond or to Not Respond. That is the real question.
Trisha
Tuesday, January 31, 2012
A Divided Mind
Hi All!
Have I mentioned lately that I can't get spell-check to work on my blog? What is up with that? Does anyone else, who uses Blogger, know what I am doing wrong? Anyway - due to a malfunctioning spell-check, please forgive any misspellings and let me know what they are so I can fix them!Okay - as I write this, of course spell-check works today! Go figure!
Today I am in a state of "divided mind" over what I should write. While I was trying to fall asleep last night and while I was showering this morning, I came up with several options. I could tell you about my most recent grocery store experience - which would be a kind of a rant. Then there is the letter I would like to write to my previous doctor about the meds he had me on. Or I could write about how evil I am for being conservative. Hmmmmm. Such choices.
Of course, while I sit here undecided, time is slowly ticking away. In fact, I don't know that I actually have time to write any of the three topics I have in mind.
Soon I will have to be out of the house and on my way to the doctor's for a check-up (yeah!).
Which leads to another topic. Fasting for blood work.
My appointment is for 10:30 - which means it will really be around 11:00 (A.M. for anyone who thought I might really be headed to the doctor's office in the evening!). So, into the room by 11:00 means blood work will really be drawn around 11:30. I don't know about you but, for me that is pretty much lunch time. Then, the doctor will come in. That means it will be about noon before I am back in my car and headed home for food. No, I won't stop somewhere because I have already paid for food waiting for me at home!
My stomach is growling already despite my best efforts to appease it with lots and lots of water (which SHOULD help with the blood draw but not too much with limiting bathroom visits!).
How cranky do you think I will be by the time the doctor sees me????
Hope you have a less grumbly day!
Trisha
Have I mentioned lately that I can't get spell-check to work on my blog? What is up with that? Does anyone else, who uses Blogger, know what I am doing wrong? Anyway - due to a malfunctioning spell-check, please forgive any misspellings and let me know what they are so I can fix them!Okay - as I write this, of course spell-check works today! Go figure!
Today I am in a state of "divided mind" over what I should write. While I was trying to fall asleep last night and while I was showering this morning, I came up with several options. I could tell you about my most recent grocery store experience - which would be a kind of a rant. Then there is the letter I would like to write to my previous doctor about the meds he had me on. Or I could write about how evil I am for being conservative. Hmmmmm. Such choices.
Of course, while I sit here undecided, time is slowly ticking away. In fact, I don't know that I actually have time to write any of the three topics I have in mind.
Soon I will have to be out of the house and on my way to the doctor's for a check-up (yeah!).
Which leads to another topic. Fasting for blood work.
My appointment is for 10:30 - which means it will really be around 11:00 (A.M. for anyone who thought I might really be headed to the doctor's office in the evening!). So, into the room by 11:00 means blood work will really be drawn around 11:30. I don't know about you but, for me that is pretty much lunch time. Then, the doctor will come in. That means it will be about noon before I am back in my car and headed home for food. No, I won't stop somewhere because I have already paid for food waiting for me at home!
My stomach is growling already despite my best efforts to appease it with lots and lots of water (which SHOULD help with the blood draw but not too much with limiting bathroom visits!).
How cranky do you think I will be by the time the doctor sees me????
Hope you have a less grumbly day!
Trisha
Monday, January 30, 2012
DVR Dump
Hi All!
Despite the fact that I claim not to watch too much television . . . I have become absolutely addicted to our DVR.
True, I don't watch much tv when the shows actually air - I just watch them later. This is usually so that I can keep peace with my darling Hubby who wants to watch "his" shows in the evenings. I record "my" shows and watch them during the day when he isn't home. A good arrangement.
On a normal day, my DVR recordings list has about 20-30 things on it waiting to be watched. Yes, about half of those things actually were recorded by Hubby and I will (hopefully) never have to watch them but, half are mine! I watch current things first and then dabble in the older things - generally movies recorded during the "free preview" weekends.
Imagine my shock (terror, surprise, horror) when I pushed the "recordings" button on my DVR and the list which came up contained only TWO items. BOTH of which were Hubby's shows!
Yikes!
Where did all of my stuff go?
Where is my Harry Potter and the Deathly Hallows (part 1)? Where is my recently recorded episode of the sit-com whose name I can't recall? Where is my "Eat, Love, Pray?"
Where did everything go?
Now, this has happened before. I have gone into a shocked mode and . . . a few minutes (or hours) later, the recorded material "pops" back up.
Not this time. It has been three days and still nothing.
The DVR has dumped my stuff.
Shoot!
Trisha
Despite the fact that I claim not to watch too much television . . . I have become absolutely addicted to our DVR.
True, I don't watch much tv when the shows actually air - I just watch them later. This is usually so that I can keep peace with my darling Hubby who wants to watch "his" shows in the evenings. I record "my" shows and watch them during the day when he isn't home. A good arrangement.
On a normal day, my DVR recordings list has about 20-30 things on it waiting to be watched. Yes, about half of those things actually were recorded by Hubby and I will (hopefully) never have to watch them but, half are mine! I watch current things first and then dabble in the older things - generally movies recorded during the "free preview" weekends.
Imagine my shock (terror, surprise, horror) when I pushed the "recordings" button on my DVR and the list which came up contained only TWO items. BOTH of which were Hubby's shows!
Yikes!
Where did all of my stuff go?
Where is my Harry Potter and the Deathly Hallows (part 1)? Where is my recently recorded episode of the sit-com whose name I can't recall? Where is my "Eat, Love, Pray?"
Where did everything go?
Now, this has happened before. I have gone into a shocked mode and . . . a few minutes (or hours) later, the recorded material "pops" back up.
Not this time. It has been three days and still nothing.
The DVR has dumped my stuff.
Shoot!
Trisha
Friday, January 27, 2012
Hair Dilemma
Hi All!
Recently, I have been growing my hair. For most of my life, I have gone from having longer hair (the longest was in college when it was halfway down my back) to having short hair (and I mean short!). Since my hair grown quickly, growing it out isn't too much of a hassle. Yes, I have to deal with awkward in-between stages when my hair looks . . . .odd but, generally, those stages are over pretty quickly.
However.
My hair is thick. Every time I get my hair cut, my hairdresser "thins" it to make it look less like a bush and more like human hair. Normally, I don't mind having thick hair and my mother is envious of my thick hair (yeah, just let her live with it for about a month and that will be over!). When my hair is longer though, the thickness of my hair can become an "issue."
Why, you may ask?
Well, in case you don't know, thick hair takes FOREVER to dry. I am really not exaggerating too much with that time frame either!
I can wash my hair and let it air dry and it will still be damp over two hours from the time I step out of the shower. And, yes, I towel dry it well.
If I need to have my hair look more "finished" than its normal haphazardly dried look ( one side goes under and the other flips out while a few rougue waves in my otherwise straight hair makes things look . . .interesting), that required blow drying.
Blow drying is fast, right? Think again, my dear friends!
To blow dry my hair it takes at least (at LEAST) half an hour. And that is without really doing a lot of styling. For me to control how my hair looks at the end of the blow drying requires even more time (since I have to dry stategically). Sometimes it can take upwards of forty-five minutes.
My arms get tired! I get sweaty! I get cranky.
I do like how my hair turns out though!
The price of having long hair.
Hummmmph.
I could do without it.
Trisha
Recently, I have been growing my hair. For most of my life, I have gone from having longer hair (the longest was in college when it was halfway down my back) to having short hair (and I mean short!). Since my hair grown quickly, growing it out isn't too much of a hassle. Yes, I have to deal with awkward in-between stages when my hair looks . . . .odd but, generally, those stages are over pretty quickly.
However.
My hair is thick. Every time I get my hair cut, my hairdresser "thins" it to make it look less like a bush and more like human hair. Normally, I don't mind having thick hair and my mother is envious of my thick hair (yeah, just let her live with it for about a month and that will be over!). When my hair is longer though, the thickness of my hair can become an "issue."
Why, you may ask?
Well, in case you don't know, thick hair takes FOREVER to dry. I am really not exaggerating too much with that time frame either!
I can wash my hair and let it air dry and it will still be damp over two hours from the time I step out of the shower. And, yes, I towel dry it well.
If I need to have my hair look more "finished" than its normal haphazardly dried look ( one side goes under and the other flips out while a few rougue waves in my otherwise straight hair makes things look . . .interesting), that required blow drying.
Blow drying is fast, right? Think again, my dear friends!
To blow dry my hair it takes at least (at LEAST) half an hour. And that is without really doing a lot of styling. For me to control how my hair looks at the end of the blow drying requires even more time (since I have to dry stategically). Sometimes it can take upwards of forty-five minutes.
My arms get tired! I get sweaty! I get cranky.
I do like how my hair turns out though!
The price of having long hair.
Hummmmph.
I could do without it.
Trisha
Thursday, January 26, 2012
Do You "Word With Friends?"
Hi All!
Recently, I started playing "Words With Friends." It has been a very humbling experience.
I am a very literate person. I have college degrees (notice the s!). My English vocabulary is vast.
Why then can't I beat people on this game?
Could it be because I get selections of letter like this:
X Q I R R O N N ?
OR like this:
S T R G N V L ?
OR how about this:
I E E E O A Y ?
*sigh!*
Trisha
Recently, I started playing "Words With Friends." It has been a very humbling experience.
I am a very literate person. I have college degrees (notice the s!). My English vocabulary is vast.
Why then can't I beat people on this game?
Could it be because I get selections of letter like this:
X Q I R R O N N ?
OR like this:
S T R G N V L ?
OR how about this:
I E E E O A Y ?
*sigh!*
Trisha
Tuesday, January 24, 2012
I Have Class
Hi All!
Yes, it has been a long time - again! I haven't gotten back to a place in my life where I can think about blogging regularly but . . . . I think it is getting closer!
Anyway - thank you to everyone who still reads my blog when I do post. Your comments really lift my spirits (and yes, that darn curd was ridiculous!).
Yesterday was my first class for this semester. This class is the last class I need to finish my education in the Interpreter Preparation program.
In case you don't know, I am taking classes in order to become a certified American Sign Language Interpreter. After finished all classes (the end of this semester) I will take a test to become certified so that I can (hopefully) start working as an interpreter.
So far, it looks like this will be a good class for me. I know everyone in the class (as far as students go) and the teacher seems nice. My only concern is that there is one student who has "glommed onto me" in the past and I am just not ready to deal with that this semester. We will see how that goes.
In other news . . . not a whole lot is going on in my world. I am struggling to continue walking each morning. I think I am getting (or have) shin splints because when I try to push myself to walk quickly, the fronts of my shins/ankles really hurt. When I stop walking and am bumming around home or when I am just walking leisurely, everything is fine. This is frustrating! This morning I managed to just keep walking - at a slower rate than I would have liked - but the shins/ankles weren't too bad.
My beautiful kitties are doing well even though Miss Cleo took an unexpected (by her) slide into the bathtub this morning! Skor is just as feisty (and annoying) as normal while managing to be completely adorable at the same time. I am not sure how he does that!
Everyone in my family is doing well as far as I know. This statement, however, can be patently false and I wouldn't know because, apparently, family doesn't call when people are in the hospital!
Let me explain.
My husband's brother (and best friend) was recently in the hospital (in a different state) for four days and no one called to tell us. FOUR DAYS! I would think that would merit a phone call. What do you think?
Hubby is a bit upset that he wasn't told about it before his brother was home again.
Not that telling us about it would have changed anything but it would be nice to be kept "in the loop."
On a totally random note - do you have a wall calendar that you really like? Over the past several years we have had several with nice pictures (but I hate it when they "preview" the next month's picture at the bottom of the current month! There is no surprise and I feel like I have seen the picture before - which I have!) but, honestly, I get bored. I would like a calendar with facts for each day or little challenges to solve (math??) and things to think about - but in a wall calendar and not the one page a day calendars that sit on your desk. Have you ever seen something like that?
Maybe that will be my next project!
Thanks for reading my rambling - if you made it this far!
Have a fabulous day!
Trisha
P.S. It seems like my spell checking doesn't work for some reason so if you see misspelled words, please let me know!
Yes, it has been a long time - again! I haven't gotten back to a place in my life where I can think about blogging regularly but . . . . I think it is getting closer!
Anyway - thank you to everyone who still reads my blog when I do post. Your comments really lift my spirits (and yes, that darn curd was ridiculous!).
Yesterday was my first class for this semester. This class is the last class I need to finish my education in the Interpreter Preparation program.
In case you don't know, I am taking classes in order to become a certified American Sign Language Interpreter. After finished all classes (the end of this semester) I will take a test to become certified so that I can (hopefully) start working as an interpreter.
So far, it looks like this will be a good class for me. I know everyone in the class (as far as students go) and the teacher seems nice. My only concern is that there is one student who has "glommed onto me" in the past and I am just not ready to deal with that this semester. We will see how that goes.
In other news . . . not a whole lot is going on in my world. I am struggling to continue walking each morning. I think I am getting (or have) shin splints because when I try to push myself to walk quickly, the fronts of my shins/ankles really hurt. When I stop walking and am bumming around home or when I am just walking leisurely, everything is fine. This is frustrating! This morning I managed to just keep walking - at a slower rate than I would have liked - but the shins/ankles weren't too bad.
My beautiful kitties are doing well even though Miss Cleo took an unexpected (by her) slide into the bathtub this morning! Skor is just as feisty (and annoying) as normal while managing to be completely adorable at the same time. I am not sure how he does that!
Everyone in my family is doing well as far as I know. This statement, however, can be patently false and I wouldn't know because, apparently, family doesn't call when people are in the hospital!
Let me explain.
My husband's brother (and best friend) was recently in the hospital (in a different state) for four days and no one called to tell us. FOUR DAYS! I would think that would merit a phone call. What do you think?
Hubby is a bit upset that he wasn't told about it before his brother was home again.
Not that telling us about it would have changed anything but it would be nice to be kept "in the loop."
On a totally random note - do you have a wall calendar that you really like? Over the past several years we have had several with nice pictures (but I hate it when they "preview" the next month's picture at the bottom of the current month! There is no surprise and I feel like I have seen the picture before - which I have!) but, honestly, I get bored. I would like a calendar with facts for each day or little challenges to solve (math??) and things to think about - but in a wall calendar and not the one page a day calendars that sit on your desk. Have you ever seen something like that?
Maybe that will be my next project!
Thanks for reading my rambling - if you made it this far!
Have a fabulous day!
Trisha
P.S. It seems like my spell checking doesn't work for some reason so if you see misspelled words, please let me know!
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