danelle

I am saddened by the loss of Kelly. I can't imagine what her family is going through, I can only try. She had to big of an obstacle for her little body to undertake. Sounds like she gave it all she had though. Please let Steph, her husband and family know that they are in our prayers. You are also in our prayers. God has a new little angel now.......... Many many hugs and best wishes, Danelle

Ernie, First question, What took you so long to quit leaning on the wall if it made you pass out hehehe, just kidding! I am unable to exercise at all but I've heard good things about the total gym. You can use that in many angles/positions. Sorry I couldn't be of more help! Good luck and happy exercising, Danelle PS-just don't lean on the wall anymore

Jessica, Congratulations on your move!! How exciting! I know that your parents will be so happy to have you close by. And I am glad that you will have that additional support that you need. I bet they will spoil Ethan rotten! Hopefully that will also give you some relief and less stress knowing that they are there to help with the baby and maybe give you a little more time to relax, etc. Maybe it will help David understand a little more too. I am glad you posted that today, apparantly my feelings about that were stronger than I thought!! I wish you much luck with your move, it's sounds like it will be a positive one for you all. Take your time packing, don't get too tired and remember to drink, drink, drink!! Keep us posted. Hugs, Danelle

I think maybe I was being a little unfair to my husband in the post I just made. Everything I said was true but I feel like I could have said it in a better way. I know it has to be hard on them to have someone always be feeling bad, having to do some extra stuff around the house like cook, clean, clothes, after working all day. It must get old for them too. He does try and help out around the house, just not much of one for emotional support. And I know this finance thing has got him in the same tissy that it has me in. Everyone suffers from this dreaded thing. I think a convention or get together of POTS pts and families is a great idea! Amy, that is so funny-I describe POTS as being in a "Groundhog day" movie too!! Everyone keep your heads up and try and understand where our significant others are coming from too-after all, if we didn't we would be just like them! Now,,,,,,,,,,,,I need to practice what I preach Danelle

Hi, does anyone know if POTS is progressive? I know that everyone is different and I used to have "up times and down times" but over the past1 1/2-2 yrs things have progressively gotten worse. Do some people with POTS have a progressive stage, and if so, where does it end???? By the way, I have had POTS for 18-19 yrs and I am now wondering if there isn't maybe an additional diagnosis of some kind. I have been tested for many things though .

Well, I'll try and keep this as positive as I can I developed POTS after my first pregnancy at the age of 18(I am now 37) but was just diagnosed properly a few months ago. My husband has been through the whole thing with me-from not knowing what was going on, to all the wrong diagnoses, to the bad spells and the "better days". Unfortunately, over the past almost 2 yrs, things have gone steadily down hill for me My POTS has gotten much worse and I am struggling to be able to just get in a few hours a week. Everyone is telling me it is time to file for disability but what will we do for finances in the meantime???? SO I haven't done it yet. Anyway, back to the spouse thing, my husband has "tried" at times to be supportive but for the most part-has not been. He not only doesn't understand, but doesn't want to understand. Needless to say, our marriage is pretty shaky right now(just celebrated our 20th anniversary). Even though he has been with me from day one of this craziness and knows what I was like before POTS, he still doesn't get it. And even after having two dr's, including Dr Grubb, tell him that this is very debilitating and it makes it hard for us to do just basic daily things, he STILL doesn't get it. Now that I am not bringing in big bucks anymore, or even enough to make ends meet-literally-he is even more upset. He doesn't want to help come up with any solutions. He says all he can do is go out, work, and pass over the check for me to pay bills with and that he can't do it all on his own-and that is true-we can't make it on his paycheck alone, so I am in a crisis financially and mentally(which does wonders for POTS ) He won't agree to sell a vehicle, sell the boat, or do anything that may help out because he says he will have to give up everything. I told him last night that I HAVE given up everything-including a descent quality of life. I have written him letters, I have sat him down more times than I can count, I have had the drs talk to him, NOTHING works. I hate to say it but I am beginning to have some resentment towards him-which by the way, he told me that he has for me because I can't work full time, I can't do what I used to do, and now he won't be able to quit his stressful job in 2 yrs when our son graduates because of me. He says "what kind of life do you have anyway?" I replied, "I have my children who make me so happy and I can still do little things" but you know, I think he is right. I have burdened my family tooooooo much. I do feel worthless and it hurts. I even told him that I know what he is going through, as far as living with a chronically ill family member, because I did it with my fathter and it isn't fun but it's even less fun being on this side of the fence. My husband won't do the counseling thing either, besides we don't have the money anyway. He keeps telling me what a waste of money and time it was to go to Ohio to see Dr Grubb. And he won't get on this site, I've tried. Wow, where did all that come from?????????Sorry to be so negative Just want to let you know that I can sympathize completely. Sorry for bursting out like this-It's just a bad time. I hope things get better for you and your fella will eventually understand. Many hugs your way, Danelle

Yeah, I understand about the insurance mess!! Thanks for all the input, I guess I will just try out my new GP in July(his first appta available) and see how that goes. I can't afford to go anywhere right now anyway. Gosh, I can't afford to go to the grocery store right now, don't feel like it physically anyway!! Ya know what I mean jelly beans???!!! POTS is for the birds-nah, i wouldn't wish it on them either . Danelle

I do the same, just dump salt on everything that doesn't taste nasty salted (and some that do too ). I also add salt to my daily glasses of gatorade. Don't know if it works or not but I feel puffy when I do it enough. Actually, I guess it works a little cause if I don't drink as much and LOAD up on tons of salt, I can tell it the next day-sx get worse(If that is possible ) Danelle

Ya know, I have spells like that too. And there are time when I think it is "stroke-like" as well. Mine is almost always on my left side. Have had these spells for yrs and I do have weakness on that side and decreased sensation. Interesting to hear others have this too Maybe it is POTS related. Heck, I'm beginning to think everything is POTS related......... Hope you are feeling better, Danelle

Thanks for the update. Prayers and hugs to Kelly, Steph, her husband and to you too MM Danelle

Ditto to Paige's reply. That is me as well. Jackie, that sounded like me to, on more days than not. Thanks for sharing that with us. I think we all got a good laugh danelle

I finally bought the waist high 30-40mmHg compression hose. This is day 2 with them on. Day one I was able to work for 4 hours I checked my BP at work and it was 106/70 which is wonderful for me!! Today I haven't had them on long enough to tell, still dizzy but I'm gonna check my BP in a little bit to see if they are keeping it up better. Thanks to all of you for your great advice to buy them. So far it has definately well worth the money (even though the insurance wouldn't pay) Thanks again , Danelle

Gots lots of questions today. Was just reading over some posts and it seemed like the people who go to Mayo get lots of testing done. Whereas the ones that go to Dr Grubb get a dx and some prescriptions. I saw Dr Grubb in April and was just wondering if it is worth it to go to one of the Mayo clinics to see if they could do anymore for me than Dr Grubb. Do they do extensive testing when they know you have POTS, if so, what kind do they do and is it worth it??? I don't even want to attempt it if not because I have had it up to my "brain fog" with doctors! Danelle

Yes, I have this problem too. I was supposed to attend a class last week but knew I couldn't make it all day long even 1 day much less 5 without feeling light-headed, disoriented, or feeling like passing out (if not actually passing out). And some have a hard time getting disability for POTS??!!! Can't figure that one out yet!!

Hi, I have a big problem with light, especially sunlight. It's not that it gives me a headache ALL the time but the fact that it makes me extremely dizzy. Of course heat makes me dizzy but I am just talking about sunlight and lights in general just making me feel sooooo dizzy even if it is cool outside (or inside). I was just wondering if anyone else experiences this. It can be depressing because I can't even go outside if the sun is shining on a cool day without feeling like I'm going to tip over or pass out If anyone else has this, do you know what mechanism of POTS causes it? Thanks, Danelle

Jessica, 23 weeks!! That's amzing!!! See, they are able to make miracles happen in NICU!! Positive thoughts to Steph and her family, think positive!!! Danelle

Stephanie, her husband, and her little girl will continue to be in my prayers. I'll tell ya, the NICU units have come so far over the past 10 yrs. They can do amazing things for those little ones. Every one that I have come in contact with have outstanding Dr's and nurses and are always on top of things, one step ahead. I'm sure she will be a little fighter! Please let them know they have lots of people praying for them, and you hang in there too!! Keep us posted!

You ladies are doing much better than me!!! I have chronic anxiety daily and panic attacks frequently(several a week). ANd that is with pretty regular doses of clonazepam. I have had these since my POTS started 18 yrs ago. Each time is still like the first. It ***** Just wanted to let you know you aren't alone. Danelle

MM, Sorry it's taken a little while to get back to you. It sounds like things are going better at this point. YEAH The age of viability is typically 26 weeks but then still they baby has a major struggle to make it. However, if she can make it to 28-30 weeks things look soooo much better. And you are right, girls have a better chance than boys. Boys have the most difficulty when born early. Tell Stephanie to hang in there and that we are all thinking of her and her little girl. Glad to hear she is of the magnesium sulfate. It can make a person feel so bad and lethargic. On a good note, my sister's sister-in-law had a baby girl at 26 weeks. She weighed 1 pd 1 oz and she made it!!! Yes she had a long road but she is 6 yrs old now and is perfectly normal. She just wears glasses which makes her even cuter Keep us updated, once she gets a little farther along they will probably give her some steroid shots (usually betamethasone) that will help with the baby's lung development if she were to have to deliver early. Also, tell her to dring LOTS of fluids!!!! Hugs, Danelle

This sounds wonderful! But I have to play a little ignorant. I am not familiar with the NDRF book and how I can download it or get my hands on it. Would someone please let me know how? Thanks

Nina, I'm so glad to hear things are going ok right now. Every extra day that she can carry the baby is a blessing and helps the baby so much. Do you know how many weeks she is? (I only ask because I am an OB nurse and thought maybe I could give you a little insight) Our thoughts and prayers continue to go out for you all!! Danelle

UnicornIsis, Wow, I just read your reply. You must have been typing at the same time I was. I guess I know my kids pretty well. You said what I thought my kids were feeling and I know Sue's daoughter feels the same way! I am so glad that your family does that for you, that sounds awesome!!! My POTS started at the age of 18 so I know how you feel too. Hang in there and know that we are all here for you. And thanks for letting us parents see things from your point of view. Many hugs to you too, Danelle

Sue, I am at the exact same place you are so I can totally relate. I am so sorry you missed your daughter's special moment. I know how badly that hurts. Just reading your post broke my heart for you. I have also been unable to snap out of this POTS thing for about 2 months now, with no good days at all!! I have had to leave work shortly after getting there because I can't function(I have only worked 8 hours in 2 weeks) THis has happened 4 times this month, not including the times I have had to call in. Needless to say, we are under extreme financial stress right now. I have 2 teenagers as well. My oldest son graduated on Sun. Well, guess what happened? I woke up out of my sleep at around 5 that morning with my heart flying and couldn't breathe or see good. Just knew I was gonna have to call 911 and all I could think of was missing his graduation. Luckily after about 40 minutes and extra meds, I was able to get it under control. I did make it to the graduation but it was SO hard, the air wasn't working as well and I could feel myself wanting to pass out several times. Just when I was telling my husband I didn't think I would be able to make it any longer the air kicked on!! THank God-but it was still hard to make it through. THen I had 30+ people over for lasagna. It all worked out ok but I know how you feel. It hurts so bad that we can't do just the simplest things with our kids. And I know for a fact that it hurt you more than it did her for you to miss her award. Our kids love us unconditionally and that is what is keeping me going right now. I do sometimes see disappointment in their eyes when they want me to go do something with them and I just can't, it breaks my heart but the disappointment that I see in their eyes is for me, not for themselves. Didn't mean to rattle on, just wanted you to know that I am in the same spot as you are right now and I agree, it *****, and that is putting it nicely. I can't understand either about the dr's. But I don't even want to go there right now. Just know that I am thinking about you and my heart goes out to you. Give your daughter a big hug, she knows how proud you are of her. Try not to beat yourself up over it. Let us know how you continue to do and I will be praying for you to get better as well. Big hugs, Danelle

Hi, just wondering who has compression hose (30-40mmHg) waist high and if they work and are worth the money?. I was thinking about buying a pair ($115) and was hoping to get some input from those of you who have tried them. That's alot of $ to put out but if they work really well then they are worth it. Any input is greatly appreciated Danelle

Ling, You are so right! I know change must come from me first. I don't know why things are so hard right now. I have had this thing for 17+yrs but just recently diagnosed. It has just gotten MUCH worse over the past year and I'm not sure why. Sometimes I try and say "OK darn it, I'm not gonna let this thing get to me and I will win" then, I go to work and just about pass out, get weak, clammy, sweaty, shaky, confused, etc etc etc. You are right though, I need to be strong. It is just hard to find the strength right now and I just can't seem to get out of these bad "POTSY" days. THey won't go away!! Thank you for your kind thoughts and suggestion, I will take you up on them. I admire those of you who can "keep on truckin". That used to be me. Hugs sent your way and much thanks, Danelle