The Trip Home

Hi All!

Well, I am adequately recovered from the LONG day of travel that Hubby and I undertook to attend the Southwest Central Regional Symposium in San Antonio on Saturday. I think I could have slept for another eight hours but . . . a pesky little kitty and a pesky not-so-little kitty thought it would be nice for us to give them some food! Imagine that!

Actually, it was time. Time to get up and start the new week. I was out in the wet weather this morning walking (by myself - C did the three day walk this weekend and didn't walk today) and enjoying my podcast of the NPR show "Wait, Wait! Don't Tell Me!" If you haven't heard this show, it is funny.

Now I am trying to get back into my daily routine of blogging, IMing with Mom, playing with the kitties, and going to the ASL lab. The Lab is only on Monday and Friday mornings but today is Monday so . . . Oh - I also need to grocery shop today. Some food other than cereal and toast would be good to have around!

Okay, the trip home from San Antonio. We hit the road right after the meeting (and a little chatting by me while Hubby was chomping on the bit) at about 4:30 P.M. It was still light out so I spent a little while reading the forward to Johnny Bush's book (written by Willie Nelson) and the first chapter. Very interesting. Then, Hubby turned off the highway into . . . an outlet mall! Can you believe it? I didn't ask to go or beg to go - he just turned into the outlet mall all by himself! True, it was because he wanted to look for new tennis shoes for himself but, actually being there meant I might get to look at a shop or two myself!

Well, we were looking for the Nike store and drove around one side of the outlet mall about three times looking for it. We found it . . . on the other side of the mall! We headed into the store and found the exact same shoes that Hubby already has. He wants a new pair EXACTLY THE SAME. Once he finds something he likes . . . he keeps getting it until they no longer make them! Unfortunately for Hubby, he couldn't remember if he needed the regular or the wide shoes and was wearing his "thin" socks. AND they didn't have any of the wides in his size. *sigh* No new shoes for hubby.

After Nike we hit Calphalon. We need some new cook wear. Our nonstick pans are beginning to show some significant wear (and we ONLY use the appropriate tools for non-stick surfaces!). As always, we have been shopping around and we hoped to get a good deal at the outlet store. Nope! All the sets were factory seconds and were REALLY expensive! We decided to wait and buy a set at Kohl's which would be cheaper and would be factory firsts.

After coming up empty again, we fought the crowds (slow economy, my eye!) and headed to the Coach store. Now, I don't like to shop and really don't do high end things - with the exception of Coach purses. I blame my mother for getting me "hooked." They are nice and wear for a long time! I will say that I normally only buy leather Coach purses because paying that much for fabric . . . . just isn't right!

Anyway, there was a huge swarm of women in the shop (again with the slow economy!) and after fighting my way through them I saw a purse I had sort of been coveting at the Coach store at the mall. It was marked down and then had another 50% off! I had to get it! It is a really nice, burnished leather purse. It is a reddish color (not fire engine red but a nice shade) with an outside pocket on each side and handles long enough to put over the shoulder but short enough to allow the purse to be carried on my arm as well. I was looking for a picture of it and couldn't find it. Since my batteries for my camera are charging - You are out of luck for today. I might take a pic and get it up tomorrow.

So - I bought the purse and we hopped back into the car and headed north. By now it was too dark to read so I listened to my ipod as Hubby tuned into the Oklahoma State and Texas Tech football game. He isn't really a fan of either team but if Tech won then maybe Ohio State would move up in the polls or something . . . how do men understand all of that stuff?

Soon we were once again pulling off the highway without a word from Hubby. I knew we needed gas so . . . that was my assumption. I was wrong! Hubby pulled up to a Dairy Queen and told me that he hoped they had pumpkin pie blizzards (my favorite). They didn't *sigh* but, I still enjoy a good blizzard and so we both got one for dinner. We were being very conscious of our diets on this day!

We zipped back onto the highway and drove, and drove, and drove, and drove . . .

I had a lot of fun near the end of the trip as I engaged Hubby in all kinds of weird conversations to keep him awake. We talked about how you know if a band has "jumped the shark," which bands he listened to as a teenager, how 8 tracks worked (I never actually listened to one), the poor decision the music people made when they decided to put only one or two songs on a cassette and sell them, what the hand gestures were for each of the Texas schools (we are pretty much clueless except for Texas and Tech), Thanksgiving, just why the radio people thought it was a good idea to put the sound effect of a ringing bell into the broadcast whenever someone got tackled to stop the play, and other exciting topics. It was fun.

At around 11:00 P.M. we pulled into our driveway, gathered our assorted stuff from the car, and entered the house to find two woeful kitties waiting for us. They wanted food and acted starved even though our neighbor had come in around noon to give them food. Poor little things!

What a day!

Trisha

Voice Update: Well, I haven't really talked too much today but . . . I think I am still good!

The Southwest Central Regional Symposium

Hi All!

Well, Hubby and I are back from San Antonio! We left the house at 6:30 A.M. to begin out trek to the South. After about 5 1/2 hours, we finally arrived at our destination, The University of Texas Health and Science Center in San Antonio. We asked the guard at the gate where we needed to go and he directed us to a parking lot and waved in the general direction of a building where the elusive room 309L was located.

Despite the guard's (less than clear) directions to the room, it took the two of us about 20 minutes and the intervention of a very, very nice security guard to actually get to the room. Let's just say that both of us were a little frustrated getting there. I guess on a positive note, Hubby and I both got our workout for the day by walking all the (wrong) way around the building before locating the security guard.

When we finally get registered and into the room, we saw about 20 or so other people gathered for the meeting.


My friend, Lori, was the first person we saw when we found the right room. Doesn't she have a pretty smile? Hubby is to her right reading his newspaper. The woman smiling behind Lori is Renee and she has commented on my podcast. She is a very nice woman. Mike, another person with ABSD, is sitting next to her.



Here are some more people at the meeting. I didn't catch all of their names but the man in the back row wearing the green hat was Michael and has the most beautiful smile.Lylia and Charlie, both members of the NSDA Board, spoke about their personal experiences with SD and also led an audience participation discussion about topics of concern about SD. One thing which almost everyone in attendance was concerned about was the insurance aspect of paying for Botox treatment. The NSDA has a publication out with advice for dealing with insurance companies. You can check the document out online and can print it out for your own personal use.

The group also talked about getting amplified phones through the Texas STAP program and other problems that people with SD encounter every day like speaking at drive-throughs and in noisy rooms.

Johnny Bush, a country singer, is a honorary board member who has ADSD, told us a bit about his life and also sang Whiskey River (take My Mind). He is an outspoken advocate for SD and spreads information about SD whenever he can.

Tammy, the support group leader for San Antonio, and her husband, Jim, were both at the meeting. Jim is a BIG fan of Johnny Bush and was thrilled to meet him in person.

Johnny was signing autographs and selling books and CD's after his performance. Lori bought a CD and I bought his autobiography. Here we are getting his autograph (sorry it is a bit off center but Hubby isn't the most confident photographer).

The man standing in the background is Dr. Blake Simpson, an Otolaryngologist who treats Johnny Bush and who spoke to the group about a new procedure for injecting Botox which allows people, who for their job's sake can't stand a lengthy period of breathiness after Botox, to reduce the breathy period. He injects the muscles controlling the false vocal cords and this also relaxes the muscles which control the true vocal chords. In Johnny's case, it relieves all of the spasms and allows him to speak with a nearly normal voice. This procedure has only been tested on people who have ADSD and Dr. Simpson said that he would be very reluctant to attempt it on people with ABSD due to the impact on muscles involved in breathing and swallowing.

Even though this meeting only had about 30 or so people in attendance, I felt that it was well worth the time that Hubby and I took to get there and to get home (which is a story for tomorrow, perhaps).

I am so glad that I got to meet everyone at the meeting and hope that more meetings are held in the future. I know that the National Symposium will be on April 4th, 2009, in Charlotte, North Carolina. If you have SD you should really consider making plans to attend the meeting. For more information (which is still pretty basic at this point) you can go to the NSDA's website and look under Events.

Trisha

Voice Update: Still going strong. I felt a bit awkward speaking to others who had SD worse than I currently do but they were all so wonderful and supportive that I soon just enjoyed being with them. I did some massage on the way home from San Antonio and again this morning while reading some of Johnny's book. I think everything is still pretty loose at the moment!

The Piano, The Paw, and The Pirate Map

Hi All!

The Piano - It is apparent that Skor is feeling better and that his paws no longer bother him. He is still wearing a baby sock to prevent him from licking his back paw (today it is a very "manly" pink!) but he doesn't let that slow him down. In fact, he was back on the piano yesterday. It isn't a proven fact that he cut his feet in the piano but it is a definite possibility and there he is again . . . trying to crawl around in the piano!

I thought I had figured out a way to keep the little bugger out. I had put piano books behind the music stand covering the few inches of open space giving access to the innards of the piano. That, however, didn't stop Skor. He was up there pawing at the books and moving them around enough so that he could squeeze under the closed piano lid! I now have to totally close up the piano when I am not playing it - what a pain in the neck!

The Paw - The good news is that after our doctor's appointment on Wednesday, we no longer have to go back unless something is wrong. Luckily, Skor's paw is looking better every day. I can tell he is chomping at the bit - so to speak - to get that foot out of the sock so he can give it a thorough cleaning. I have begun letting him lick the foot a bit when I change his sock. No - I don't let him get at the injured part - just the back of his foot and some of the fur around the foot. He looks so happy when he does that!

The Pirate Map - This is a project for ASL. I don't really want to talk about it but it was another "p" word and I needed one for the title today. I will say that class went well last night. The teacher did look at me like she was a bit worried that I might lose it and go postal though. I don't know if that is a good thing or not. At least she isn't picking everything I do to shreds anymore and she hasn't told the class how WONDERFUL her two favorites are for a couple of days now. Hmmmmm- I wonder if she got the message somehow!

Tomorrow Hubby and I are traveling to San Antonio to attend the South Central Regional Symposium of the National Spasmodic Dysphonia Association. Since I was unable to attend the national symposium this year I am really looking forward to this regional one. It will be interesting to see what it is all about and to meet more people with SD. The only down side is that we are driving there and back on the same day. It will be a long drive!

Woman Without A World

Hi All!

If you have read this blog for very long, I am sure that you are aware that I have ABductor Spasmodic Dysphonia (ABSD), an incurable, neuological vocal disorder. This disorder makes speech very difficult, if not impossible for most of the people who have it. The only treatment is Botox injections into the muscles which control the vocal chords along with speech therapy. If you would like to find out more about Spasmodic Dysphonia, go to the National Spasmodic Dysphonia Association's website.

Anyway - I have ABSD, the rarest of the two types of SD (the most common is ADductor SD) and had basically no "normal" voice at all for over a year beginning in the fall of 2006. I had two Botox shots and extensive speech therapy. Amazingly, against all odds, I have gotten about 95% of my "normal" voice back over the past several months. No one is certain just why I have been able to get my voice back. I personally consider it to be a miracle.

So, now you have the background. That leads me to my title for today's post. When I was first diagnosed with SD and when I first started losing my voice I became aware that I was becoming less and less a member of the "heard" world. The world where people speak and are heard and understood by others around them. Since my voice was leaving, it became more and more difficult for me to be heard and to communicate. The other members of the "heard" world started ignoring me or treating me like I was mentally impaired. It was almost as if I was physically fading from view as my voice became weaker and weaker. By the time I had no voice, it seemed like I was no longer a "real person" but rather a shadow walking among the "heard" world.

My self-confidence started to fade as my voice did. I had always been a person who could speak in public to pretty much anyone and now I couldn't do that. In order to make myself understood I had to repeat myself endlessly or write down my message. You might think writing messages would be fine but, people in the "heard" world are not used to people handing them notes and react in surprising ways. Some people are threatened by the notes and take them as if they will explode in their hands. Others seem to be offended that they have to take the time to read a note. Either way - not a big confidence booster.

A short while after being diagnosed with ABSD, I found another world, the "unheard" world. The world of people with SD. This world communicates with the internet and emails. They meet for support group meetings. They have to struggle to find different ways to communicate their needs and wants. Many of the "unheard" have to retire or change jobs because they can no longer meet the vocal demands the jobs require. The "unheard" make trips to doctors to get Botox injections and work with speech therapists with different levels of success. They understand the difficulties of using telephones and talk about the merits of text messaging. The "unheard" share common experiences of being made to feel like less of a person simply because of their lack of a voice.

The "unheard" world made me feel better. I was like the other people in this world. They understood. I felt comfortable in that world.

Until I got my voice back.

Now, I almost fit into the "heard" world. I can pretty much talk normally whenever I want or need to. I no longer have to carry paper to write notes about what I want to order at restaurants or purchase at stores. Most people don't even notice the slight breaks and pauses in my speech unless they are really listening or unless they know I have SD. However, I am not like the people in the "heard" world. I have SD. The issues of having the disorder are still on my mind pretty much all the time. The lack of self confidence - especially about my voice - is still firmly implanted in my mind. I almost fit - but not quite.

However, I no longer fit well into the "unheard" world either. Many SD people can't believe I actually have ABSD because they never heard me prior to getting my voice back. I sound too "normal" to share their concerns or problems. True, I have experienced them all before but I don't have most of the same issues anymore now that I have a voice. Somehow it doesn't seem right that I am advocating for SD when I don't sound like I have it.

So - where exactly do I fit in? Where do I belong now that I have SD but don't really sound like I do? Do I pretend that I don't have SD and merge with the "heard" or do I continue to spread the word about SD and attend support group meetings (okay - not the group I got banned from!) with the "unheard?" Is the fact that I can talk relatively normally good for SD people to hear or does it give them false hope for their own condition?

I am lost between worlds!

Trisha

Voice Update: Still doing really well. I am not feeling like talking too much - in my "down" cycle due to problems with Skor and ASL class. I am doing my massage though.

Wednesday Book Review

Hi All!

Time for another book review!

This time the book is The Goodbye Summer by Patricia Gaffney. I can't remember if I have read other books by this author but her name certainly seems familiar - Oh wait! She wrote The Saving Graces which I read about a year or so ago.

The story centers on a young woman named Caddie. She is an orphan who was raised by her very eccentric, artist grandmother. Now, the grandmother, called Nana, is getting on in years and her eccentricity is becoming much more erratic and leaning towards forgetfulness instead of artistic expression. Nana breaks her leg and decides to move to an elder care/convelesence home called The Wake House to recover.

The colorful characters who reside at The Wake House soon become like family to Caddie and support her as she struggles to "find herself" at the age of 32. Caddie meets a best friend, old enough to be her mother or grandmother, and learns many lessons from her as they complete things on the woman's "life list."

Caddie goes through many experiences, both bad and good, in the course of the story and I found it fun to read along. The book went by quickly and was a light, fun read.

I won't spoil the ending but I will say that I am a bit dissapointed in how it ended. Somehow all of the "loose ends" just didn't seem to be secured, from my point of view. I was looking for more story after the last page and there was no more. However, that wasn't enough to keep me from thinking that this book is enjoyable. It would be the perfect summer reading book while lounging at the pool or a nice winter book to read while cuddled in front of a fire.

Trisha

Voice Update: My voice is doing pretty well. I seem to be going through a period where I don't want to talk too much. I tend to go through that once in a while. As I write this I can happily imagine never having to speak again. I will say that a lot of education about people with vocal problems still needs to be done. My ASL teacher related a story about one of her students saying that she would make fun of anyone who couldn't talk right. *sigh* So sad.

Husband Award Needed!

Hi All!

Just a quick Skor update: Yesterday, Hubby and I were trimming Skor's nails (they were sharp little daggers!) when he squirmed out of his cone. We decided to just leave him out for a bit and see what he would do (he still had on his lovely baby sock!). Surprisingly, he licked himself all over but never touched the sock! Seeing that we decided to leave him coneless over night and in the morning - the sock was still in place. Skor is much happier without the cone and since he is leaving the sock alone . . . we are going with it.

Okay - today's topic.

I hate, hate, hate clothes shopping. Usually. Every once in a while I do get a bug to go and buy something new. This past weekend I just HAD to buy some new shirts. My old shirts are starting to get, well, old. Some even have holes in them from some mysterious source (I know it isn't just me because C and I talked about it one morning and she gets the little holes in her clothes too!). It was really time to start looking for some replacements.

So . . .I convinced Hubby that we needed to go to the Mall. I did this by promising a dinner at the Cheesecake Factory - his favorite restaurant. The fact that they had pumpkin cheesecake wasn't a factor - really! Just because I love that cheesecake and that they have been out of it for two years in a row now when we go to get it . . . . Okay - it was a small factor!

First we stopped at Dick's Sporting Goods. New walking shoes were in order for me since my old ones were beginning to get really big holes in the soles. I found a nice pair and then we ate. The pumpkin cheesecake - to die for!

Then, I conned Hubby into stopping at Lane Bryant with me. I needed some new undies. Well, I ended up dragging him around the entire store looking at all of the new clothes. I even tried some on! By the time we left I had purchased the undies as well as a pair of black jeans and a lovely corduroy coat. In the wrong size.

Now, I knew that the coat was the wrong size and the store had called another mall and had them hold the coat in the correct size for me until the next day. I really like the coat.

The next day Hubby took me to the OTHER mall. This time he waited in the car. I finally found the Lane Bryant and got the coat but, I couldn't just exchange coats and leave. This store had different clothes and I spied some shirts I just had to try. And a dress or two. In an hour I was back out to the car with four new shirts and a new dress as well as the darling coat. I am thrilled with my new clothes!

Hubby just sighed and told me that he knew I hadn't just exchanged the coat - I was in the mall too long. BUT - he didn't complain!

Is there an award for a husband like that?

Trisha

Voice Update: Still going strong!

Contortionist Kitty

Hi All!

Well, it is Monday, the beginning of another week. Aren't you all excited to see what new possibilities await you during the next seven days? I am trying hard to be positive this week - to disprove my reputation of being such a negative person that I get banned from support groups! Can you tell that being banned still rankles a bit?

Anyway - I am going to give you a Skor Update. As you may remember, I took him to the vet on Friday for his check up. Things didn't go too well. The Doc wasn't too happy with the back foot and put an even bigger cone on Skor! Then he gave me some spray antibiotic to put on his foot.

Doesn't he look sooooooo happy? Believe me - I am not a happy camper either. I have to keep giving him the liquid meds for another 5 days. What fun!

Some good news is that Miss Cleo isn't afraid of this cone. I was worried that she would be afraid all over again. It only took her about 5 days to get used to the first cone!

Okay - so, we have the new cone and everything is fine, right? WRONG! I wasn't home more than 15 minutes when Skor showed me just what he thought of the cone by starting to lick his bad foot. YES! HE CAN REACH THE DARN FOOT EVEN IN THE BIGGER CONE!

I called the vet to let him know about this "development" and he told me to come get some bitter apple spray to put on the foot. "All cats hate this stuff. I am positive Skor will not be licking his foot with this on it." Even the vet techs in the front told me that they were certain it would work.

Do any of you want to take bets on how well it worked? No? Are you sure?

IT DIDN"T WORK! Skor licked the darn stuff off his foot. Sure, his eyes and nose were irritated and runny from the bitterness but he was determined! What a cat!

Well, I showed him who was boss. I put a sock on his foot (a baby sock) and taped it on. He can't lick the foot now! He has had the sock on his foot since Sunday morning and has only pulled it off once so it seems to be doing the job. Hubby and I just have to keep an eye on the sock and pull it up every once in a while after he has gotten it pulled almost off.

Hopefully, I can stop forcing meds down his throat after going to the vet AGAIN on Wednesday! Keep your fingers crossed for me!

Trisha

Voice Update: Still doing well and getting back on track with the massage.