Hi All!
Welcome back. Today it is sort of rainy and chilly so you might want to grab a blanket to bundle up in. These southern houses are built to stay cool in the summer and are pretty lousy at staying warm in the winter. Do you want some extra socks to keep your feet warm?
During the past few visits, I have been concerned with pretty much focusing on my and my back story. Yes, I want to tell you about it so that you can avoid some of the pitfalls that I ran into at a full run but, the stories are all about me.
Me. Me. Me.
Sometimes it is so easy to get wrapped up in my own life and my own dramas that I lose sight of what others around me are going through. It is during those times that God finds a way to remind me to refocus and to think of others.
Yesterday, I got just such a reminder from God.
My roommate from college (during my Sophomore year) is a wonderful woman named Marcia. She has always been an inspiration to me - from the very first minute we met. Marcia has such an inner strength and an inner peace that you just can't help but notice. She has a positive outlook on life which is anchored in her belief in God.
For the past several years (it is around four or five years, I think), Marcia has been battling with a very rare and very aggressive form of cancer (whose name I can't remember). She has had multiple surgeries and what seems like endless rounds of chemotherapy. The number of CAT scans and PET scans and x-rays number into the unbelievable as does the number of doctors' visits and consultations.
Through all of this fighting, Marcia has kept her sunny disposition and her belief in God. She has had her "down days," certainly, but she never failed to see God's hands at work in her life. Marcia's family - a husband and two teen aged boys- has been very supportive during these years and have worked together to adjust to Marcia's illness even though she has struggled to keep things as close to "normal" in her household as possible.
Yesterday, I read on Marcia's Care Pages Blog that she has stopped fighting and is now focusing on living the rest of her life as happily and as pain-free as possible. She has been admitted into Hospice Care and has had a hospital bed moved into her living room.
Tears poured down my face as I read about Marcia's decision to stop the battle and to live life to the fullest in the time she has left.
Tears poured down my face at the thought of the world losing such a wonderful person.
Tears poured down my face at the thought of this wonderful person being gone from my life.
Tears poured down my face at the thought of Marcia's two sons growing up without their mother.
Tears poured down my face at the thought of her husband being a widower raising two boys.
Tears poured down my face at the realization that I had been thinking that my life was difficult when in reality, it was nothing compared to Marcia's life.
Tears poured down my face as I prayed for Marcia, her family, and for me. For me to never forget that others are struggling. For me to never get so wrapped up in my life that I miss hearing others call for help.
Tears poured down my face.
God bless.
Trisha
Monday, December 31, 2012
Thursday, December 27, 2012
Part 2 and Snow!
Hi All!
Welcome back! I think you will see that the place is much neater (no more cobwebs or dust) and full of holiday cheer. I still have a few truffles left so help yourself.
Believe it or not, I had a white Christmas! This wouldn't be so surprising except for a couple things: first, I live in Texas; second, it hasn't been a white Christmas here since 1975!
The snow has been around for a couple days . . . it is slowly melting in places were the sun gets to it but with temps below 40 it might take a while!
Anyway - I want to continue with my story about where I have been. I think the last time we talked I told you about the Seroquel zombification.
It was horrible.
After getting no support from good 'ole Doc Feely, I decided to stop taking the meds. Cold Turkey.
DON'T DO THIS! EVER!
Withdrawal is almost as bad as the zombification!
For two days I didn't sleep - at all. In fact, I was over stimulated, hyper. Then I got mean.
The best way I have found to describe this whole time period is that there are two sides of my brain (well, duh! I mean personality-wise in this case!). One side is the logical, normal side of me and the other . . . is more of a rebel. During the time after Seroquel - the rebel side of my brain took over and had the attitude of "Screw the whole world and everyone in it!"
NOT my normal personality! I "watched" myself do and say things that I would normally never do or say and knew (in that logical side of my brain) that it wasn't right but . . . the rebel brain was in control and certainly wasn't going to listen to logic!
This "lovely" phase lasted for several (really about four or five) months and it was frustrating to me (and poor, darling Hubby!). I didn't want to act the way I was acting but . . . I couldn't help it. The logical side of my brain heard everyone telling me I needed to see a counselor or a psychiatrist but . . . since it wasn't even remotely in control . . . that wasn't going to happen.
Slowly (think a snail sleep walking!), I started to regain "myself" but I still wasn't "right." I started to seriously think about getting professional help but . . . I was honestly terrified that the professional would put me on a med like Seroquel. The thought of going back into a zombie-like state scared the pants off of me and made me very reluctant to seek help.
Hubby and I talked (and talked and talked . . . ) and I decided that I would seek help in January (2012). I had a deadline. Now, I only had to stick with it.
That is all for today . . .just another reminder - NEVER (and I DO mean NEVER EVER) stop taking medications cold turkey! Especially medications for depression or anxiety. Trust me - you WILL NOT enjoy the withdrawal experience!
I hope that wherever you are, you are warm!
Trisha
Welcome back! I think you will see that the place is much neater (no more cobwebs or dust) and full of holiday cheer. I still have a few truffles left so help yourself.
Believe it or not, I had a white Christmas! This wouldn't be so surprising except for a couple things: first, I live in Texas; second, it hasn't been a white Christmas here since 1975!
The snow has been around for a couple days . . . it is slowly melting in places were the sun gets to it but with temps below 40 it might take a while!
Anyway - I want to continue with my story about where I have been. I think the last time we talked I told you about the Seroquel zombification.
It was horrible.
After getting no support from good 'ole Doc Feely, I decided to stop taking the meds. Cold Turkey.
DON'T DO THIS! EVER!
Withdrawal is almost as bad as the zombification!
For two days I didn't sleep - at all. In fact, I was over stimulated, hyper. Then I got mean.
The best way I have found to describe this whole time period is that there are two sides of my brain (well, duh! I mean personality-wise in this case!). One side is the logical, normal side of me and the other . . . is more of a rebel. During the time after Seroquel - the rebel side of my brain took over and had the attitude of "Screw the whole world and everyone in it!"
NOT my normal personality! I "watched" myself do and say things that I would normally never do or say and knew (in that logical side of my brain) that it wasn't right but . . . the rebel brain was in control and certainly wasn't going to listen to logic!
This "lovely" phase lasted for several (really about four or five) months and it was frustrating to me (and poor, darling Hubby!). I didn't want to act the way I was acting but . . . I couldn't help it. The logical side of my brain heard everyone telling me I needed to see a counselor or a psychiatrist but . . . since it wasn't even remotely in control . . . that wasn't going to happen.
Slowly (think a snail sleep walking!), I started to regain "myself" but I still wasn't "right." I started to seriously think about getting professional help but . . . I was honestly terrified that the professional would put me on a med like Seroquel. The thought of going back into a zombie-like state scared the pants off of me and made me very reluctant to seek help.
Hubby and I talked (and talked and talked . . . ) and I decided that I would seek help in January (2012). I had a deadline. Now, I only had to stick with it.
That is all for today . . .just another reminder - NEVER (and I DO mean NEVER EVER) stop taking medications cold turkey! Especially medications for depression or anxiety. Trust me - you WILL NOT enjoy the withdrawal experience!
I hope that wherever you are, you are warm!
Trisha
Wednesday, December 26, 2012
Merry Christmas (a bit late!)!!
Hi All!
Sorry it has been six days since my last post. I am not quite used to this "write something everyday" thing again. Plus, we had my parents here for a visit and then . . . well, you know how it goes.
I know that I have more of my story to finish but I thought I would diverge just a little bit today to talk about something a bit more relevant to the time (Christmas, of course!).
During the Christmas Eve service at our church, the pastor spoke about "the message being in the music." That got me thinking. As some of you might know, I "collect" music. Not a genre specific vinyl record collection or anything like that. I just like to acquire music from all over. All different kinds of music.
As you might suspect, I have been listening to Christmas music for the past week or so (actually, I listen to Christmas music all year long because there is NEVER enough time to hear all the good songs when you confine them to just the holiday season!). Due to my eclectic taste, I found myself listening to traditional songs sung by Bing Crosby and then launching into non-traditional songs by more current artists. I even bopped along with Christmas rap songs! It is quite a mix I have!
No matter what the genre of music. No matter who was singing. No matter how many weird sound effects there were. I noticed that each and every song had something in common.
Each song celebrated Christmas. Not a generic holiday (okay, there were a few of those in the mix but very few), but CHRISTmas. Most of the songs specifically sited the birth of Jesus as the reason for the season. Some were even prefaced with a prayer or a reading of scripture - there was even scripture in one of the rap songs!!
It struck me that everyone, no matter how different, can come together and celebrate the same thing once a year - the birth of Christ.
I understand that not everyone believes the same as I do as a Christian. I understand that different beliefs have different celebrations but, I think that no matter what we believe or how we celebrate, we can enjoy the season and celebrate with each other.
There are some groups of people in the world who are very vocally against displays of the religious story of Christmas. They claim that by having a manger scene in front of a church or in a town square, they are being "Forced" to celebrate Christmas.
Personally, I think that someone needs to stand up to these people and tell them that by limiting my expression of my Christian beliefs so I don't "offend" them, they are, in fact, FORCING me into their beliefs.
If I wanted to be atheist, I would be. But making me NOT celebrate Christmas (or any other religious holiday) is forcing to me practice THAT belief.
I don't like that. I don't like it one bit.
Merry Christmas. Merry CHRIST mas!
To all of my non-christian friends, please have a wonderful holiday season no matter what you celebrate. I respect your religious celebrations and appreciate that you respect mine.
Trisha
Sorry it has been six days since my last post. I am not quite used to this "write something everyday" thing again. Plus, we had my parents here for a visit and then . . . well, you know how it goes.
I know that I have more of my story to finish but I thought I would diverge just a little bit today to talk about something a bit more relevant to the time (Christmas, of course!).
During the Christmas Eve service at our church, the pastor spoke about "the message being in the music." That got me thinking. As some of you might know, I "collect" music. Not a genre specific vinyl record collection or anything like that. I just like to acquire music from all over. All different kinds of music.
As you might suspect, I have been listening to Christmas music for the past week or so (actually, I listen to Christmas music all year long because there is NEVER enough time to hear all the good songs when you confine them to just the holiday season!). Due to my eclectic taste, I found myself listening to traditional songs sung by Bing Crosby and then launching into non-traditional songs by more current artists. I even bopped along with Christmas rap songs! It is quite a mix I have!
No matter what the genre of music. No matter who was singing. No matter how many weird sound effects there were. I noticed that each and every song had something in common.
Each song celebrated Christmas. Not a generic holiday (okay, there were a few of those in the mix but very few), but CHRISTmas. Most of the songs specifically sited the birth of Jesus as the reason for the season. Some were even prefaced with a prayer or a reading of scripture - there was even scripture in one of the rap songs!!
It struck me that everyone, no matter how different, can come together and celebrate the same thing once a year - the birth of Christ.
I understand that not everyone believes the same as I do as a Christian. I understand that different beliefs have different celebrations but, I think that no matter what we believe or how we celebrate, we can enjoy the season and celebrate with each other.
There are some groups of people in the world who are very vocally against displays of the religious story of Christmas. They claim that by having a manger scene in front of a church or in a town square, they are being "Forced" to celebrate Christmas.
Personally, I think that someone needs to stand up to these people and tell them that by limiting my expression of my Christian beliefs so I don't "offend" them, they are, in fact, FORCING me into their beliefs.
If I wanted to be atheist, I would be. But making me NOT celebrate Christmas (or any other religious holiday) is forcing to me practice THAT belief.
I don't like that. I don't like it one bit.
Merry Christmas. Merry CHRIST mas!
To all of my non-christian friends, please have a wonderful holiday season no matter what you celebrate. I respect your religious celebrations and appreciate that you respect mine.
Trisha
Thursday, December 20, 2012
The Story - Part 1
Hi All!
I am so happy to see you back again today! The place is slowly getting back into shape and is pretty much dust-free today so feel free to have a seat.
Yes, the weather is certainly chilly today. Imagine, yesterday it was almost 82 degrees (it was 64 when I started to walk) and today it isn't supposed to get above the high 40s! Yikes! I guess that is Texas for you!
Are you all done with your Christmas preparations? Personally, I am still working on a few things - like decorating the tree. I also need to get a few more things for Hubby for under the tree. However, my candy making is finished for the season. I sent Hubby off this morning with a big platter of truffles and buckeyes for his office party today. Everything looked yummy!
I am so happy to see you back again today! The place is slowly getting back into shape and is pretty much dust-free today so feel free to have a seat.
Yes, the weather is certainly chilly today. Imagine, yesterday it was almost 82 degrees (it was 64 when I started to walk) and today it isn't supposed to get above the high 40s! Yikes! I guess that is Texas for you!
Are you all done with your Christmas preparations? Personally, I am still working on a few things - like decorating the tree. I also need to get a few more things for Hubby for under the tree. However, my candy making is finished for the season. I sent Hubby off this morning with a big platter of truffles and buckeyes for his office party today. Everything looked yummy!
Can you see the reindeer and Santa? I think they turned out particularly well considering I had to pretty much improvise once I saw the idea on a magazine cover!
Anyway. I did promise to explain where I have been, didn't I?
To be perfectly honest, I am struggling with just how much I should tell. I am not ashamed of anything but am just not too sure that everyone needs to know.
I guess the start of the story is safe so . . . sit back, have a truffle and I will tell you a story.
Over a year ago I had a routine check-up with the doctor who was my general physician then. This doctor had been managing my anti-depressant medicine for many years and I was taking Cymbalta. While Cymbalta helped with the depression, I was finding that there were some side effects that I could no longer tolerate. One was night sweats (no - I am NOT in menopause!) that were horrible. So . . . with these side effects in mind, I asked Doc Feely (as he shall be called) if we could change things up.
His response?
"Oh goodie! We get to experiement!"
Yes, that gave me a bit of a pause but Doc Feely is a bit of an odd duck anyway so . . . I went ahead with the plan.
First, Doc Feely put me on a med that really didn't help too much. Then he tried another which gave me a LOT of anxiety. Not good. Finally, he put me on Seroquel. A pretty high dose of Seroquel.
After three weeks, I went back for another check-in and told Doc Feely that I didn't like this med because it made me really sleepy (as in about twenty two hours a day!!). He then decided to keep me on the same med but to cut the dosage. Fine . . .sort of.
The med still made me sleepy (now only about nineteen to twenty hours a day) and had a bunch of other side effects. They included feeling "foggy," having trouble saying what I was thinking, a feeling of tension in my joints, and worsening depression (because I couldn't think or make decisions!).
In an email, I told Doc Feely about these effects and the fact that my speech therapist was concerned about the fact that I was having problems forming my thoughts into words. After all, I already have one neurological problem (Spasmodic Dysphonia) so messing with my mind wasn't that good of an idea.
Shortly, I got a response, via email, from the good Doc. He said that all of what I was feeling was due to the medication and that I should "take a walk" to get rid of everything.
Really? Take a walk? I could barely stay awake long enough to make Hubby's lunch in the morning and I was supposed to head outside to walk? I was terrified that I would fall asleep along the way or get lost (remember, I was fuzzy in the head) and not be able to find my way home.
As a solution, Hubby agreed to walk with me when he got home from work (FYI: Hubby goes to Doc Feely as well and has no problems with him so he thinks his advice is good.). Each day I would drag myself along our appointed route with Hubby at my side. Normally (before the meds), I can walk for several miles without a problem but now, I could barely make it through the half mile route. Additionally, I could barely make any conversation while walking. This is also not a problem for me normally!
So . . . . Hubby and I are walking in the evening and I am pretty much sleeping the rest of the day away. However, when I am awake . . . I try very hard to think about my situation. By this time I was unable to make any decisions and felt very unsure of myself and what I thought. This from a person who is normally very decisive and pretty intellectual. It felt like hell . . . .
Oops! I just noticed the time. I need to get on with my day so I will stop the story here for now. If you would like to come back tomorrow, I will pick up where I left off and you can have some more truffles and maybe - just maybe - some Spiced Pumpkin Pecan ice cream (the best stuff for the holiday season!).
Thanks for listening and have a super day!
Trisha
Wednesday, December 19, 2012
Welcome back!
Hi All!
It is so good to see you all again! Come on it!
Oh . . . . wait a minute while I get rid of those pesky cobwebs. Please don't mind the dust - I have been gone for a while and I haven't whipped this place back in shape yet. Just take a dust cover off of the couch and sit for a while!
Have you noticed all of the spam these days? Due to that I have added word verification to my comments - we will see if that keeps the pesky buggers away! Yes, it is one more this you, my friends, have to do but, hopefully, you will be willing to put in the extra effort!
What have I been up to? Wow . . . now THAT is a long story. I will get to that sooner or later. Today I just want to say that I am happy to be back and that I have missed everyone. My upcoming posts might be a bit personal or a bit "dark," but bear with me. After I have gotten eveyone caught up, things should become a bit lighter.
What's that? My voice? Thank you for asking. My voice is doing very well. I had a minor set back when my speech therapist retired. I neglected my voice for a while and it was apparent. No, I didn't totally lose my voice again but I could tell it wasn't as good as it should be. Luckily, my therapist invited me to continue to see her at her house so I am back on track again!
Hubby is doing well as are my two very spoiled cats, Skor and Miss Cleo. Miss Cleo is getting older and is becoming more demading (and vocal) in her old age. Skor is still a pesky kitten (who is four years old) who gets into everything and anything - including trouble!
Thank you for coming and visiting but I really need to get this place cleaned up. Feel free to stop by again tomorrow. Hopefully, I will have some treats for you and then we can start the story of just where I have been lately.
Enjoy your day!
Trisha
It is so good to see you all again! Come on it!
Oh . . . . wait a minute while I get rid of those pesky cobwebs. Please don't mind the dust - I have been gone for a while and I haven't whipped this place back in shape yet. Just take a dust cover off of the couch and sit for a while!
Have you noticed all of the spam these days? Due to that I have added word verification to my comments - we will see if that keeps the pesky buggers away! Yes, it is one more this you, my friends, have to do but, hopefully, you will be willing to put in the extra effort!
What have I been up to? Wow . . . now THAT is a long story. I will get to that sooner or later. Today I just want to say that I am happy to be back and that I have missed everyone. My upcoming posts might be a bit personal or a bit "dark," but bear with me. After I have gotten eveyone caught up, things should become a bit lighter.
What's that? My voice? Thank you for asking. My voice is doing very well. I had a minor set back when my speech therapist retired. I neglected my voice for a while and it was apparent. No, I didn't totally lose my voice again but I could tell it wasn't as good as it should be. Luckily, my therapist invited me to continue to see her at her house so I am back on track again!
Hubby is doing well as are my two very spoiled cats, Skor and Miss Cleo. Miss Cleo is getting older and is becoming more demading (and vocal) in her old age. Skor is still a pesky kitten (who is four years old) who gets into everything and anything - including trouble!
Thank you for coming and visiting but I really need to get this place cleaned up. Feel free to stop by again tomorrow. Hopefully, I will have some treats for you and then we can start the story of just where I have been lately.
Enjoy your day!
Trisha
Thursday, February 16, 2012
A Boring Life?
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
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 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
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