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Posted by: cinthia ritchie ® 08/16/2002, 14:21:55 Author Profile Mail author |
Hi Everyone! Thanks for all of the emails regarding my surgery. I haven't posted since before I left for Philly last month. I have, you see, been a bit depressed. I wasn't able to have the surgery. I went all the way to Philly to find out that I don't even have the AD but AB type of SD. Dr. Blumin was wonderful though. I truly loved him. And I had a great time in Philly with my sister and son (ah, swimming in an outdoor swimming pool--such a luxury for two people from Alaska). But it was quite a disappointment, and the funny thing is that it didn't really hit until I got back home. Dr. Blumin shot me up with AB Botox injections, which were swift but deadly, if you know what I mean. Amazingly enough, it really worked. My speech was very smooth with just a few breaks. That was the good news. The bad news is that Dr. Blumin only gave me a small dose, since he didn't want my breathing passage cut off during my flight back home. So it's already beginning to wear off. The drawback of the AB shot is that it did compromise my breathing, as Dr. Blumin mentioned it might. I'm very athletic and still can't, more than a month later, run or swim hard. I can't even hike at a decent pace without gasping. It's very depressing. As if I have to choose between having a smooth voice or an active lifestyle. And at this point I say the hell with the voice, I want to hike and run. I want to live, not talk. Another depressing thing is that if I continue with the AB shots, I have to fly to Seattle to get them, since there is no one up here qualified to perform the procedure. I've made some changes, though. I've put in notice at my editorial job to go down to part-time and have an assistanthip to finish up my MFA. I should be ready for my thesis defense by next December. After that, I don't know. (Oh, if only I didn't have to work for a living, then my voice would barely bother me at all!!) Anyway, that is my sad little tale. It isn't tragic, in light of what is happening with the rest of the world. But still, it is my disappointment, and because of that, it hurts terribly. Take care everyone, Cinthia |
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Posted by: Lynne Martinez ® 08/16/2002, 16:38:48 Author Profile Mail author |
Dear Cinthia, Good to see you back on the BB after awhile. I applaud your spirit and understand your disappointment. HOw wrenching it must have been to make that huge decision to go for the SLAD surgery, and then be told you didn't qualify. Makes me pause to think. You've brought up two extremely important issues, related to your case, and also other cases. We've discussed them on the BB many times in the past. The *breathing* (respiratory) issues as well as the *employment* issues. What you say is SO true. SD compromises our breathing enough but Botox and surgery makes another impact on our ability to be active. Frequently. And, we don't really know how much until it affects us. I had a severe respiratory attack two days ago so this issue is primary for me now. Like you, I was an outdoorswoman (walking, hiking, biking, skiing, mountain climbing, etc.) as well as a social dancer. When I got SD in 1990, I weighed 120 pounds. I am tall. Now, I am fat and I can't walk a mile without wheezing. Part of it is from SD itself but a large part has been from my treatment. I totally agree with you that being active is so important and we often must make those choices. One needs *air* to be active. It's not a bad idea to consider the *breathing* aspect when searching for a treatment. We all go through that. The most important thing you said was - if you didn't have to work for a living your voice would not bother you much at all. I agree 100%. Like you, this has been my biggest stress, as a single mom in the early days of SD and now, in my "Golden Years"...being a woman alone trying to work to support myself with a bad voice and breathing problems. Without having to make money to support myself, I could deal with my ugly voice. You hit the nail on the head with that comment! I'm sure it will ring true with many self-supporting SD'ers. Cinthia, there is a positive, hopeful spirit in your post. You're an inspiration. I hope your son is OK also. Best of luck with the new part-time work arrangement and your grad work; and, thanks so much for sharing your story. --Lynne (AD/SD with tremor; RLN surgery; Northern California) |
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Posted by: Rachel Thomae ® 08/16/2002, 20:24:09 Author Profile Mail author |
Cynthia, I just want to offer my support to you. I am a single mom, and I have a job in an office where I answer the phones and help customers. I'm working on establishing myself as a freelance writer so that I can work from home (even then, there are still the interviews and calls from editors though)... I dread the day that my voice gets really bad again (it's already getting hoarse, and I'm hating that...) Anyway, just sending you hugs! Rachel |
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Posted by: Cinthia Ritchie ® 08/16/2002, 21:57:16 Author Profile Mail author |
Thanks Lynne and Rachel! You gals are soooo great! And talking about freelance and interviews: I get to interview Elvis next week. Cool, huh? Some dude who is coming up here to shake his hips and sing a few tunes and pretend he is "The King." Should be a fun article. My worst interview was with George Carlin. My voice was bad that day and he wasn't very understanding. I got back with him in the article, though. I used a Q & A format and made his sentences really choppy, so he sounded stupid. I can't tell you how much pleasure this gave me. Take care, Cinthia |
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Posted by: Lynne Martinez ® 08/16/2002, 22:51:41 Author Profile Mail author |
Cinthia, As we say in the trades (this "trade" being women with SD supporting other women with SD), *you GO, girl.* Glad to see you have bounced back from a momentary life blip. Best wishes and kudos for being a resiliant survivor and an inspiration to so many of us, --Lynne |
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Posted by: John Comer ® 08/20/2002, 10:32:49 Author Profile Mail author |
Cinthia, I have corresponded with Dr. Blumin related to my ABSD. I am interested to know if after he learned that you had AB rather than AD if he mentioned surgical options for the AB such as Thyroplasty. I also have AB and had this surgery at Mayo Clinic. To date I am still trying to get positive results and I believe that I eventually will. Just curious if he brought it up. Thanks. John Comer ABSD Minnesota |
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Posted by: Susan Stewart ® 08/19/2002, 09:14:13 Author Profile Mail author |
Cinthia---It takes great courage to have taken the steps that you took. Pat yourself on the back for that! I am still searching for the best path as many of us are and your story(and humor!) were quite helpful to me and, I am sure, others. You haven't lost your zest and survivor instinct---that is what counts! Best, Susan AD/SD |
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Posted by: Lu ® 08/19/2002, 15:44:21 Author Profile Mail author |
Dear Cinthia, My heart goes out to you and I just wanted to let you know your in my thoughts and prayers after reading about the difficult experience you just went through. Sincerely, Lu |
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Posted by: Colleen Hernandez ® 08/21/2002, 14:05:28 Author Profile Mail author |
Cynthia,I too have AB/SD and had surgery for it Aug 2000.I actually was diagnosed with with a mixture of AB & AD. The surgery is called a PCA MYOTOMY. I am very pleased with the results. I had it at UCLA with Dr Berke and Dr Blumin. My voice is not perfect but very functional and I do not have to have Botox shots anymore. If you would like to call and hear my results please email me and let me know. My SD was very bad before this. Colleen AB/SD NE |
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