Monday, April 27, 2015

Discouraging words

I visited a surgeon today to discuss the possibility of surgery to help manage my severe reflux. I had surgery 10 years ago for this issue, but they sometimes need to be redone after about this length of time. I was hoping this might be a simple fix.

I was wrong.

Due to scar tissue from the first surgery, a second one would likely require a large, open incision. This, along with the possibility of rupturing the esophagus, makes it considerably more risky than the first was.

Before any decisions are made, there will be more tests and more waiting.

Meanwhile, the reflux is making it more difficult for my vocal cords to heal. I am in constant pain. My diet, already severely restricted by allergies, is even more limited.  Add no milk, yogurt, or ice cream, no citrus, no soy, no tomato, nothing fried, and almost no caffeine. I am living on carbs with small amounts of low fat cheese, some chicken and occasionally ground beef.  Even with supplements, I am simply not getting enough nutrients to keep my levels up. I am anemic, low in protein, potassium, and vitamin D. This makes me tired and lethargic, as well as slow to heal.

I am doing everything by the letter. I am not drinking anything carbonated. I am sleeping on a very high bed wedge. I am taking the strongest meds on the market. I am chugging $72.00 a bottle GI cocktail.  But, nothing is working. There is also a possibility that this is related to my neuromuscular issues and that there is no fix available.

This is one of those days that staying upbeat and hopeful is difficult. But, tomorrow is another day. Hopefully, it will be a better one.

Friday, April 17, 2015

Progress

I am continuing to make progress in speech therapy. I am now able to speak as long as I don't try to raise my voice or allow my voice to get fatigued. I am still encouraged not to speak on the phone any more than I have to, but I can live with that until my healing is more complete. 

Even more exciting is that I was allowed to vocalize briefly today! I don't have but a few low notes, but we are hoping that this will eventually improve. Compared to 3 weeks ago, when I had absolutely nothing, this is major. It has been 3 months since I have been able to sing anything. 

Interestingly, my speech therapist has identified some problems with my swallowing that appear to be connected with my congenital myopathy and we are working on ways to help me swallow more effectively and not choke as much. 

Monday, the doctor is supposed to have another look at my vocal cords.  I am anxious to see how the healing is going and how it corresponds to my progress in speech therapy.

Keep the prayers coming! Please.


Tuesday, April 14, 2015

Anger Management?

Last night, I made the mistake of posting a comment for the first time on the Dancing With the Stars voting page. I have been both agreed with and roundly criticized for my opinion.

I have never watched The Bachelor, but apparently, one of the contestants is this year's model, Chris. I know he is not a dancer, and I can't even imagine how hard DWTS must be for him.

However, last night, they showed an interaction with his very young partner, Witney, that really disturbed me. He became angry with her and spoke to her in a rude, arrogant, and disrespectful manner. It sent chills up my spine. I have been married to my husband for almost 32 years, and we have had our arguments. But, he has NEVER spoken to me the way that Chris spoke to Witney last night.

I hope his fiance´ was watching. I hope she does not allow herself to be spoken to in this way. If so, I hope she gets some counseling and insists that he go with her. How someone handles frustration can be a deal maker or breaker in a relationship.

Personally, if I was his fiance´, I would run.




Friday, April 10, 2015

Take Me as I Am?

I am always seeing some variation of this saying on social media. I must admit that I am not sure exactly what it means and I am not sure that this is sound "advice." I am sure that most of us long for someone who will accept everything we are. I am not sure that this is a realistic concept. 

There are things that I cannot change. I am a middle aged, Caucasian, Southern-born woman. That is cast in stone.

There are things I won't change. I won't renounce my belief in Jesus Christ. I am not going to cheat or steal for anyone. I am not voluntarily going to give up art or music. I am not going to start drinking. I am not going to stop supporting the causes I feel passionately about. I am not going to compromise myself to death. I am not going to stop smiling, laughing, and enjoying life.

However, what if there are things about ourselves that NEED changing? I have heard this expression (or variations thereof) said by alcoholic or abusive spouses many times. Or even possessive or emotionally abusive friends and family members. I have a feeling that this attitude is shared by many a lonely person. 

I am me. But, is the spirit of compromise, the ability to agree to disagree, and the ability to refrain from habits or practices that might distress friends or loved ones when I am with them, changing my inner being? I am not talking about the things I absolutely won't change, but things like knowing that my husband loathes politics and had a very low tolerance for the talking heads on any of the news channels, I choose to get my news online so he doesn't have to be bothered by it blaring through the house. I choose to find a way to compromise so that we both get essentially what we want. I don't think any of this is changing my core being.

 I don't call this changing myself. I call this respect. 

 




Saturday, April 04, 2015

Communication

When I was in grad school, the second time around, one of my courses was Research. Unlike many of my classmates, I actually enjoyed that class. 

Since I have been under orders to rest my voice, I have had to get creative with ways to make myself "heard." It has almost become a mini research project to see how different people react and interact with my different forms of communication. 

I have a text to speech program that works if there is not too much background noise. It can be configured to speak at different speeds, pitches, and accents. It sounds like a GPS voice. Some friends have been able to interact with it quite nicely, while others have difficulty hearing it. The makers of this program really need to add "Southern Drawl" as a choice of accent. 

I also have Ink Artist, a program that I use to draw things out that I might want to paint. Right now, it is doing double duty as a notepad that I can write messages on, and then erase them, saving reams of paper. Some of my friends prefer this one. This is also handy for writing my order on at a restaurant, or when I need to "talk" to a doctor. 

Friends and family who know me well can pretty much follow my gestures. I was always fairly good at charades and this skill is coming in handy.  I wonder how many calories frantic gesturing burns? 

Of course, there are a couple who simply don't want to be with me until I can actually speak. That is OK, too. It takes patience to have lunch with someone who can't communicate freely. It stings a bit, but I do get it. 

I think about people I know and know of who no longer have the power of speech. Some of them are able to use technology. Some are not. I honestly cannot imagine how I would feel if this were to be forever and these things became my only voice. 

Meanwhile, if anyone wants to have lunch with me and my electronic voice, let me know.