taylortotmom

Thank you so much- finally, Dinet recognizes my birthday- lol! I've had a great one, the kids and I have had a Mardis Gras/ birthday celebration. The pizza is on the way (ie no cooking) and my husband has been doing our laundry (ie no cleaning). I bought myself roses, had lunch with a friend- it has been awesome Carmen

Hi, Mary- I do not know what meds you are on but Florinef can cause very vivid dreams. This is one side effect my doctor mentioned and stated some of his patients have experienced Carmen

The best ways I have found to deal with "car issues" are to drink constantly (Gatorade being the drink of choice) and make frequent stops. If you are drinking constantly, chances are you will HAVE to stop frequently- which will entail getting up and walking to the bathroom. Just the simple act of getting out of the car fr few minutes can help tremendously. Also, don't rush yourself- give yourself more than enough time to get to where you are going to decrease anxiety and also give you the option of taking breaks without worrying about being late. So, just pace yourself- and be prepared. Keep peppermint or peanut butter crackers with you if you have a tendency to get nauseas and sunglasses if you get migraines. I travel A LOT but have learned through the years what works for me. Hope this can be of some help to you. Carmen

That has to be the funniest thing I have seen in my life- go Wilbur!!! Thanks, Nina- I needed that so bad

My doctor and I discussed a pacemaker for a year before deciding to try it. It was a last-ditch effort to help with at least some of my symptoms. As others stated, it only helps with the bradycardia but the biggest benefit to me is it tracks ALL my heart rates so we can see exactly when my heart goes nuts. For example, I have had several periods of my heartrate staying in the 170 range for a few HOURS at a time over the past few months and it is all documented by the pacer. The pacer can do nothing about it but it is nice to have a tracking system in place- if that makes sense. It is not the end-all be- all by any means. However, it does help with mornings as my bradycardia was getting so low at night I woke up feeling like a truck had hit me. So the pacer definitely helps with that by stimulating my heartrate as I sleep. It's just another tool. Many people (especially, those unfamiliar with dysautonomia) thought I would be "fixed" with a pacemaker- if only it was that simple..... Carmen

Thanks, you two! And Rachel- thanks for putting the correct URL address. They gave me a strange one when I set up my music page because I also have a"regular" page. So, the correct one is www.myspace.com/wwwmyspacecomtaylortotmom. Anyway, we had fun doing it and hope you all enjoy it. Of course when I sing it, it has a much more country twist- lol- Carmen

I have the demo of the song written last fall for Ms. melissa, "Swimming Towards the Sun" on my Myspace Music page if any of you are interested. It is a DEMO, keep in mind so it is not "air-play" quality- lol. Anyway, Melissa you are an inspiration and you are swimming towards the sun. www.myspace.com/myspacecomtaylortotmom - I think this is the correct address- if not, you can search under the music section for "Carmen Taylor" and you should be able to pull up my page. Thanks and I hope you enjoy Carmen

I take it at night for my restless legs and it definitely helps Carmen

Hi, Linda. I just want to echo what has already been said- at least it is DOCUMENTED. You very well may need a pacemaker- as you know I have one thanks to tachy-brady and that MAY be what is going on with you. Regardless, I surely hope your cardiologist investigates this fully. And I personally feel that many of our headache problems are linked with erratic heartrates- so to me, it makes sense that we get these awful headaches when our heartrates are all over the place. Hang in there- Carmen

Oh, shoot I wish I would have realized your birthday is today. I was in the studio last week with a friend and we recorded the song I wrote for you. It should be up on Myspace this week- I'll let you know. Anyway, a very happy birthday to the inspiration behind the song Carmen

The Venus Breeze razor (has a changeable blade with built in shave gel) has changed my life. I can shave my legs- which use to be a daunting task. I would have to break it over several baths (I'm tall and no longer can stay in warm water very long). It is amazing how much this razor has helped- I can now shave both legs- even standing up in the shower- which use to be undheard of for me. I agree with the recommendation of the Swiffer (I use the Wet Jet) and also recommend Scrubbing Bubbles disposable toilet cleaner pads. You just slip the little pads on a special "arm" thing and clean the toilet then release the little pad and flush it. No bending or scrubbing necessary. Both products reduce the amount of physical energy required for the tasks. All three products are a little pricey but well worth it to me. Carmen

Condensed soup just slightly diluted is a wonderful, quick fix because of the high sodium content. I personally keep Campbell's Chicken Noodle on hand at all times. Very buttery microwave popcorn also provides a massive amount of sodium quickly- and it's yummy. I keep prepackaged peanut butter crackers in my purse at all time and always have a bottle of Gatorade in hand when I am away from home. The crackers provide sodium and protein and when paired with the Gatorade can often prevent a bad public "incident". Baked potatoes loaded with salt, butter, and bacon bits give sodium and potassium for those of whose who may be on potassium-depleting drugs. So, you just have to think about foods alittle differently. Read your labels and see where you can get a lot of sodium- you might be surprised. Cheese, for example has a lot but salsa does not have that much so with my nachos I have cheese sause when I feel icky rather than salsa. Hope this helps carmen

So glad to hear you are back home, Amy. Lots of love and good wishes- no more hospitals for a while, okay? Carmen

Sorry to hear Chrissy is experiencing these- they are AWFUL. I have had many over the past seven years- as someone mentioned- "hemiplegic migraine" and "complicated migraines" are both good things to search. I know I personally have posted in the past about them- hope you can find some of the information to be of help. Carmen

Pretty Overwhelming Traumatic Syndrome Carmen

WOW- approval on the basis of POTS, specifically! That is awesome- congratulations! My approval was actually coded as three different diagnoses combined together (arrythmia, syncope, hypotension- something to that effect). But anyway- great news! Carmen

My heart is broken. There are no words to express my sadness and disbelief. Carmen

Well, I just say as politely as I can- something to the effect of- "I wish that would work for me but unfortunately, my body is so weird I have to do pretty much the OPPOSITE of what most patients need (more salt, less exercise, GAIN weight)". If they press on, I explain dysautonomia to them (I use the analogy of a computer with a glitch or bad wiring a lot). Some people will NEVER understand (my father, bless his heart- and he's an educated man) but that's okay. Explain when and if you feel the need otherwise, just let it go- as frustrating as that can be at times Carmen

Welcome back, sweet pea! Carmen PS- I've written the melody to your song and tweaked the lyric a little- I'm going to present it to my songwriters' group this week I'll get it online as soon as I can

Well, I don't think your question is that difficult really. Many (if not most) of us can identify with the solitude of chronic illness. I know, for me personally, the internet has literally been a lifeline. Organizations such as DINET provide support for us- thankfully. Many of us who are unable to work have found other ways to be productive. Just by providing support to others with this illness- you are accomplishing something worthwhile. As far as getting out and doing things- my personal mantra is "don't let what you can't do keep you from doing what you can do". I am unable to be the Master level Counselor I went to college to be but I AM a wife, mom, Girl Scout leader, Bible study leader, and professional songwriter. However, there are times, I am little more than a professional patient. And that's okay. Give yourself permission to TRY. You may not be able to commit to anything on a regular basis- and that too, is okay. There are plenty of ways to be involved in society as you can and when you can. Also, be prepared for the worst case scenario. Always have a cell phone. gatorade (if this is part of your protocol) and health info cards with you. By being PREPARED you have control- instead of the fear of "what if" controlling you. If you have artistic talent and feel up to it- teach a class or two. Explain to your students about your situation and I bet you will find them to be understanding. You might even enlighten a few more folks about dysautonomia- and this is always a good thing. Carmen

Thanks all, that's Julie Burton- a fantastic demo singer in Nashville on my page. I appreciate the positive feedback- hope Melissa enjoys "her" song Carmen

Thanks, everyone! I have a MySpace Music page for my professional songs I have a broken shoulder so I am limited to what I can do melodically and recording-wise right now- lol. Hope Melissa enjoys the lyric Carmen http://www.myspace.com/wwwmyspacecomtaylortotmom

Last year, I told Sunfish I would write a song for her while she was in the hospital. Well, here you go Melissa- this one is for you- I just wrote it Swimming Towards the Sun One more battle for you to face Demons dancing ?round all over the place But you?ve got what it takes To bring them to their knees You?re a fighter with a heart of gold and you?re gonna be okay- wait and see Sometimes you gotta choose to sink or swim Keep your head above water when the tides move in And I know you, you?re a strong one You?re swimming towards the sun Life can throw some curve balls That can nearly knock you off your feet Not sure which way to go Or what destiny you?ll meet But you gotta keep going Though it seems like such a fight Sometimes you gotta choose to sink or swim Keep your head above water when the tide moves in And I know you, you?re a strong one You?re swimming towards the sun Anyone else might?ve just sank down but you just keep on splashing around??. (Repeat chorus) Carmen M. Taylor 2007

We have a minivan. I made it in the front seat 12 hours one way this summer with few problems. Frequent stops and lot of gatorade, of course. Good luck! Carmen

Thanks, everyone. I had contemplated writing in about how well I was doing a few weeks ago-lol. Actually, dysautonomically speaking, I have been doing well. So, I would like to give some encouragement that it is possible for things to get better (not perfect, but better) with the right combo of meds and monitoring of lifestyle (stress, heat, fluids, etc.) Hang in there everyone, PS I am still writing songs and have a couple about to be recorded )))) It is quite exciting and a ton of fun Carmen