taylortotmom

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

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

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

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

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

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

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

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

Yes, please let us know if anyone has heard from her- I was thinking about her right as I logged on. Carmen

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

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

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

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

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

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

I'm so sorry to hear this- Amy, you continue to be in my prayers every day. Much love, Carmen

I am so sorry for the pain you are going through right now. He sounds callous and abusive. You deserve better. Take things one day at a time. I will be thinking of you and your kids. Take care of yourself. Carmen

Hi, I wanted to chime in here. I have been sick for most of my kids' lives (they are now 10 and 9). It is very important to be honest with the kids but in a comforting way. Kids tend to think in extremes- if mommy is sick she must be dying. So with young children (such as your two older kids), keep it simple but emphasize that mommy isn't dying but needs to work really hard at being well. Tell them what is hard for you: standing, heat, lifting, etc. Let them know what you can do: read, color, puzzles, etc. It sounds like you have already done a lot of the right things. I use the computer analogy with my kids and they totally get it- mom's body has a crazy virus that can't be removed without rebooting mom- lol. And humor, too- make things as less threatening as possible. We sing "Sunglasses At Night" a lot because I do have to wear my sunglasses at night in certain situations- lol But kids are so strong- I tell you, my kids have grown into the most compassionate kids. So, having a "sick mama" can have benefits. It was so, so hard when my kids were younger but it does get better. Good luck to you- Carmen

I recommend your daughter being checked out by her pediatrician to rule out a physical and/or emotional basis behind her waking up in the middle of the night- -especially, if this is a new behavior. While a weekend at Grandma's can help temporarily, it isn't going to help you if she continues doing it when she gets back- which she probably will, unfortunately. So, get help. Find out what is going on- your pediatrician may be able to make recommendations regarding diet, stimuli ( no action packed cartoons or movies,etc.). I agree you have to take care of yourself but this is a problem that needs to be nipped in the bud. So, have it looked at and see if there is something you might can do differently. Raising kids when you have dysautonomia is exhausting enough- you certainly do not need to have your sleep patterns continuously disrupted. Good luck. Carmen

I was on at-home iv infusion therapy for 18 months (daily) but had to have my port removed due to a serious infection that nearly killed me. I LOVED my port and the effect the fluids had on my life but the risk is a big one and needs to be carefully looked at before making a decision to go that route. Carmen

This makes me want to stand up and applaud- my cardiologist and I have been saying a similar thing for years. At least in my case (and based on this article- others) the frequency and severity of migraine is absolutely physiologically linked to a severe dysfunction of the sympathetic nervous system. Not just as a side effect of symptoms (stress, dehydration, etc- all of which can be triggers for sure) but is actually part of the whole syndrome.

Michelle, hope your birthday was spectacular. Thank you for all you do for all of us here. The world became a better place when you were born Hope the next year is your best year yet. Carmen

I can only answer based on the information provided, so I apologize if I am simplifying this situation. It sounds very stressful for both of you. It may be in your best interest for the two of you to go to counseling together and work through some of the anger issues and resentment. Maybe a therapist can help the two of you find a way to get your needs met without anyone feeling burned out or overburdened. There seems to be a lot going on in this situation including your mom dealing with her own poor health. You state that you will soon be totally dependent on her for financial assistance. If she is financially secure, do you think she would be willing to hire help for you- or even the two of you (do you live together?). Maybe a maid to clean or to arrange to have more meals prepared and delivered in order to save both of you energy. Have you applied for SSDI? Understanding that it is a very long process to get approved but it could alleviate some financial stress for you as well- and provide you with medical insurance. Going from having someone provide essentially all your care to nothing is extreme for anyone, especially someone ill. Do you have anyone else that can help you while your mom and you work through this? If not, the best I can recommend is for you to save your energy for things that matter. Learn how to use your periods of feeling better for getting things done that absolutely have to be done. I wish you well, and hope you and your mom are able to reconcile on this issue.

Personally, I keep the following in my purse for emergencies away from home: migraine medicines- I can't imagine leaving without an Imitrex nasal spray- if I don't have my migraine meds- I don't go- it's that important for me; peanut butter crackers- the salt and protein both help when I need a quick boost when I start to feel queezy; peppermint candy- again for the nausea; cell phone; emergency contact info in case something happens; insurance and med information cards (I have a pacemaker); sunglasses- this is another one of my- if I don't have it I don't go items; and absolutely, most importantly, I never walk out the door with a bottle of Gatorade in my purse AND one in my hand. Obsessive??? Nope- realistic. I have lived with this for eight years and I have learned what it takes to minimize the effects of this disorder when out and about- at least for me. Hope this helps Carmen

Thanks everyone for all the replies. My cardio said it could help with cholesterol and metabolism. Upon researching it, I have found it is often used with patients with congestive heart failure. Since many of our sxs overlap with CHF- it would make sense for it to possibly help us. However, I was very wary about the potential for lowering BP. However, my cardio did not mention the lowering of the BP- and he definitely knows my history and issues with chronically low BP. Anyway, if I can find some I will likely try it out and let you all know Carmen