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About taylortotmom

  • Birthday 01/11/1974

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    Tallahassee, FL
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    Full time mom to two adorable children. Diagnosed with MVP with severe dysautonomia, NCS, and tachy-brady Jan. 2003. Have a MS degree in Counseling.

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  1. I was on at home iv treatment for `18 months and it really helped my quality of life. I had a bag or two a day every day of lactated ringers which contain saline and a high dose of sodium. At the time, I had a port and I really loved having access to fluids as often as I needed them. However, the port became infected and I nearly died from sepsis so it is a not something to take likely. My expenses were paid by my private insurance. Hope this helps a little. Carmen
  2. Completely agree with Jan- if it helps- keep doing it. Milk has protein and potassium which is hugely important if you are on Florinef as it depletes potassium. Not to mention it is a filling way to get some fluid and nutrition in the morning if you don't do well with Gatorade or a heavy breakfast in the am. Despite what a lot of news media would have us to believe, cravings are very important. They often tell us things our body needs (ever notice a salt craving?) So, if Nesquick helps by all means silly rabbit, drink up! (I think that is actually Trix cereal, but you know what I mean- LOL) Carmen
  3. Although I have not been on much lately I did want to stop by and say thank you. Five years ago, I found this site and it was an absolute lifesaver for a very long time. I had been diagnosed for a couple of years and had started a new (at the time unconventional) treatment of at home iv therapy- every day. I had a port implanted and spent much of my time just trying to survive while taking care of two children and maintaining a home and marriage. In addition to receiving a port, I also received a pacemaker. Unfortunately, the port would later become infected and I almost died from sepsis. Well, spring forward to today and I am so, so much better than I was in the early days (although there are some components that are not better and seem to be getting worse:( But generally speaking, my life is somewhat functional. I use to have two good hours a day if I did everything right- now,I have many good hours. Sometimes I have GREAT days (with the exception of brutal migraines). This website was a godsend when I had NOTHING else to lean on other than my faith and a few good friends and family. Michelle- thank you seems so inadequate but a big, huge thank you for this site. Mighty Mouse, Sunfish, and many, many others thank you so much for being there- when I really needed someone to be there! Carmen
  4. Nina, I have been out of the loop and apologize for responding so late. I am so incredibly sorry for all you are going through. I have no words right now other than you will be lifted up in every positive thought I can find. You have been an encourager for so many for so long- Nina, I hope you can find some of that strength you've given others to help yourself. Peace to you and much love- Carmen
  5. yup, had it so severe it was even in my rectum (UGGGHHHH). Total hysterectomy about seven years ago. The first of my symptoms when my body literally started falling apart almost 8 years ago were gynecological. No doubt they are somehow connected- at least in my case. Carmen
  6. Dr. Michael Aikens in Opelika, AL (about 2 hours from Atlanta) is my treating cardiologist (he diagnosed me with dysautonomia in 02). Well worth a phone call to see is he can help- he trained at Kirklin Clinic (UAB). If anyone can find an out of the box way to help you- he can. I am am extremely unusual case and he has been fantastic with me. Best of luck- sounds scary but don't lose hope. Carmen
  7. Gatorade Rain- Lime- it's an ongoing joke around here- I even wear a lot of lime green to match the Gatorade that is always in my hands (The Gatorade Rain ones are not as sweet as regular Gatorade so they seem to be more manageable for the quantity we have to drink.) Powerade Strawberry Lemonade is also better than the others I have tried- not as strong tasting. Hope this helps
  8. I had the port surgery in 05. The surgery itself was uneventful but the recovery was rough. Seriously, not to scare you but it was a lot more painful than expected. However, my chest is very thin so there was a lot of fat to support it- lol. I have to say something, however. While having the port was fabulous on some levels- I loved having the two good hours a day eight hours of fluid would give me back then- it came at a very high price. My port became infected and I developed sepsis. In October of 2006- I nearly died. The port had to come out. Although it has been hard at times to not have access to iv fluid like I did, I don't know if I can ever go back to a port. The most terrifying experience of my life was what I went through when it became infected. Unfortunately, several others on this site have experienced the same thing. Ports are a LAST resort. Please understand the very real and very serious risk. I loved it when I had it- until it became infected. We were meticulous with its care and it STILL became infected with e coli and staph. So, I understand if you do go ahead with the surgery. I was absolutely desperate back then. I wanted to have some control of my symptoms and for a year and a half it work beautifully- until it didn't. So, best of luck to you I truly hope it serves its purpose for you and you can get it out as soon as possible. Carmen
  9. Yes, please let us know if anyone has heard from her- I was thinking about her right as I logged on. Carmen
  10. I can relate to your post far more than I care to get into right now. Cancer IS awful. But so is heart disease. So is diabetes. So is stroke. And dysautonomia is certainly, awful. The difference is chronic illness as opposed to terminal illness. People just do not show compassion to chronic illness like they would with a cancer diagnosis- even if it is caught early and the mortality is very low. Chronic illness is so misunderstood. We can't just have a surgery or take a pill and be okay. We aren't drug addicts. We aren't malingering. Sooooo what do you do? Since you state you have a difficult relationship with the sibling- I would really just limit how much contact you have with the individual. There are some people that will NEVER understand dysautonomia- nor do they want to- so just let it go. Show support to the cancer patient- but take care of your own mental and physical health. It is hurtful and hard to see "those" looks and hear "those" words (condescending words, glares, etc)- just avoid being a part of that experience as much as you can. I really do feel for you and I am so sorry you are in that situation. Carmen
  11. Yep, I always tell people it's just an adrenaline overload (which it seems to be in my case). But of course, get it checked out to be sure Good luck! Carmen
  12. Another thing about the ER- way too many germs. Avoid the hospital unless you are critically dehydrated and need iv fluids or something else that cannot be handled at home. The others made some great suggestions which I do myself as well; find out what you need and get the resources in line (prescriptions, etc.) to take care of it at home- you will be far more comfortable. Carmen
  13. I have very mixed feelings about this- I had one a few years ago- briefly. The idea of the maid sounded great but in reality it was a lot of work. Seriously- I had to clean before they came and strip all the beds, etc. And again with dysautonomia being what it is, I was not always guaranteed to be able to do those things on the days the maid would come. And... the cleanliness was always very short lived in our house- we are some messy folks! BUT, the thing that did me in the most was at the time I had a port and had to take meticulous care about germs and contamination ("scary germs" not just run in the mill "messiness") . I made this very clear to the agency before they started. The maid came acutely sick and throwing up into my home. I was infuriated- this was a bonded agency- I was dumbfounded. So, what I need is an Alice like on the Brady Bunch- someone that can be here every day and one that has a clue- lol Unfortunately, that's just not in the budget But generally speaking, if it can work for you it is probably a wise thing. But for us, it really didn't help. Carmen
  14. Well, in my situation I did not become acutely symptomatic until six months after the birth of my second child. Prior to that, I was essentially healthy. Carmen
  15. Just wanted to pop in and state that kayjay's post could have be written by me- in fact, I wish I HAD written it- beautifully said! My children are now 11 and 9 now as well and I was acutely sick during all my children's early years. Kids really need very little outside interaction and you are probably doing a much better job than you realize. I can't tell you how many hours my young daughter and I spent curled up in bed watching Food Network together. Those times are priceless- really, even when you feel like crud it's the togetherness the kids will remember. That is a blessing in itself. Carmen
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