Mrs. Glass

When I read your post I really didnt think that I have anything to be thankful for, but I was wrong. So here is my list.

I am thankful that I have a family that loves me. My husband who works all of the time to make things easier for me, but still has time to hug me and kiss me and tell me everything is going to be alright. A daughter that is willing to give up her life to take care of me. My loving Grandsons who are so devoted to me.My Son in Law who is more like a son to me than most mother in laws can say. My Son who is going to move in with us just to take some of the strain off of the rest of the family and to make sure someone is here at all times.That I found my Son after not knowing where he was for almost 3 years. The food on my table every day. I am thankful for my home. It is paid for and no one can take it away from me. I am thankful for my devoted little pomeranian. She makes most days bearable due to her total devotion of me. I am thankful that I did not die in the car wreck. I am thankful for Dr Richards he kept on searching until he found out it was not my heart after all. I am thankful for my Therapist who is probably the most understanding doctor that I know right now. She pushes me where no one else will.I am just thankful to be alive right now. It is hard sometimes and some days I just want to cash it in, but I know that I wont. I am thankful for all of you on this forum who have been so supportive to me. Some days I would be lost with out your support. In a way I am actually thankful for this disorder, if it was not for this I would not know a lot of things that I do now. I try to take things as they come and i have to move slower now. I am not able to do much, but on some days I can still do something. Not always, but sometimes. It has opened my eyes to just how much my husband and family loves me. It has also shown me who my true friends are, only 2 have stayed, I was totally shocked, but the rest just dont understand why I cant go to church, and i have tried to explain but it did no good so they dont even call me anymore. It has taught me just how precious life is and not to waste a minute of your life on the frivolous things. It has taught me the true meaning of love. And how to let people love me. I never could before. IT has taught me about compassion, and patience and endurance. I am also thankful for the love of God, if it wasnt for knowing that God loves me I could not go through all of this. I know that there is more that I am thankful for but my mind has gone totally blank. I agree your post has been the best You have made me open my eyes to see what is good in my life, and I want to THANK YOU VERY MUCH . Vanessa

I know what it is like to not have a good doc. My PCP wont even touch this problem. She always sends me to a specialist for everything. The only one who is really trying to help me is my Cardio, and all he is doing is to try to control my b/p. He wanted me off of the Neuronton, and I went off of it, but I had to go back on it because after back surgery I have horrible nerve pain. So I will call him today and let him know that I had to go back on it. He will not be happy but that is one pain that I can not take. My Neuro at first seemed generally interested in my problems but now it just seems like he doesnt even want to fool with it. I have talked to one person who sees the same Neuro and she said that he did her basically the same way. So I am stuck out here without proper medical help. I have sent in my app to Vandy to try to get in there. I have got to do something. I cant stand this anymore. I dont want to live like this anymore. Not knowing what to expect anymore. I want a proper diagnosis, not just guesswork and I dont want docs to push me off to someone anymore. So I know how you feel and I wish that I could help you. I would definatly write a letter of complaint on this doctor. What she did was totally wrong! Here you paid good money to get some help and all you got was brushed off. I mean where is these doctors oathes? Sometimes I think all they truly think about is how many patients they can see a day and then see dollar signs. They dont seem to care really. It is wrong and it is frustrating. They are supposed to be here to help us not to push us aside like we were just a piece of trash on the floor. I hope that you get some answers and soon. I know your frustration.Vanessa

I woke up with the flu this morning.I cant believe it, I even had the flu shot in November. This is so frustrating, why go through the pain and expense if it is not going to work. As if I didnt feel bad already. My b/p is coming up but I still feel horrible. Yesterday I developed a severe headache that would not go away. Sometimes in the night it did leave. I know that it is the Florinef, the last time I was on it when he started adjusting my meds I started getting headaches, and eventually kept one until he took me off of it because my b/p went up too high. I did find out yesterday that laying down made the headache worse, so I got scared and took my b/p it was a little high, but not to the extremes so I calmed down some. I guess the reason that I get so scared is I have no faith in our hospital here. The ER docs are incompetent to say the least. I think all they hire is burn outs who just need a paycheck. So I know that I will not go there if I am in my right mind. My stress level shoots through the roof just thinking I might have to go there. I have to have labs there all of the time, and they seem to do ok. They actually listen to me when I tell them where they will not be able to get blood from me, and if they have to poke me twice it is not because of them it is my veins. They are worn out and used up. Once you get past the ER it is ok if you have insurance. If you dont you are treated like a piece of garbage. I have insurance now, but when I first got sick I did not, and my husband was always calling and complaining about how I was being treated. But the ER is still horrible. So you can see my delimma on getting the flu now. If it gets real bad and sets all of my other problems off, my husband will force me to go. Well enough venting I am going to go lay down because I am so dizzy I can barely hold my head up right now. I am so tired of laying in bed, but that is the only time that I dont have the horrible dizzy spells. Although I get horribly tachy when I lay down, so I have to decide which I like the least. Vanessa

Thanks for all of the good advice. I have just been guessing at what to do. I did email one of the doctors at Vandy. I found her email address on another website. I havent heard back yet. But I guess I will just have to wait for a while. I just hope that the letter that I wrote to fax with the paperwork is not too long. It is three pages. but I wanted them to know exactly what I have been going through this past year. The past few months have been better compared to what it was like when this first started. But I still cant do anything with out having a horrible dizzy spell or the stupid wierd feelings that I get. Im not good at waiting anymore but I guess I dont have a choice. Thanks again. Vanessa

I hope you do hear soon; keeping in mind that many offices are running on slow if not closed until second week in January!!

Also, if the major centers are silent (or give a "no") try to re-email and reg mail to individual doctors...been there as they say...often the unit nurse or secy will scan a letter/records and "decide" that you dont fit some criteria or study theyre looking to fill...and send a dismissal reply back.

In my personal case, Dr. Biaggioni didnt even know I sent Vandy anything...and when we called him/emailed etc...he finally spoke with my cardiol here after 4 tries and pleads!!!...Of course when I didnt fit their criteria for the current studies I was told I wasnt to go...and ended up at Dr Grubb...the best happenchance ever...and then Vandy did decide they needed me after all...by then tho I wasnt going to shlep there...had my dx and no longer cared to be their guinea pig.

This way, by contacting with the individual Drs, you may touch a compassionate nerve and they may be willing to put you on the list anyway!!...BUT make darn sure its not just for study purposes...that you will leave with a dx AND tx options!!!...believe it or not you can leave without having any more info than when started!!!!!

I even got a phone call from NIH several months ago asking me to go down to be examined/tested by an Israeli Dr due in...but they repeated like THREE times that I was NOT going to know why or get any answers re: my condition, nor would I even get any tx hints!!! I decided that I wasnt going to chance a further deterioration for that...even a 10 min trip to the local Drs sets off a POTSy episode...

Also, if you get that "no" ,persist in asking for them to at least speak with your local docs to give ideas/suggestions for dx tests and/or tx...they cant really offer definitve tx without having seen you but they CAN offer a long distance suggestion to another colleague...but due to the CMA atmosphere lately its hard to get them to comply!!

GOOD Luck for a speedy response!!! ( and dont worry about the money...itll come some how...my Grandmothers used to say that if its "bershert" [yiddish-meant o be] G-d will provide a clue and a way

Finette

I took my b/p several times yesterday and it was so close to normal that it was almost scary. It has not been that good in over a year. I thought alright I am actually going to get something done today. NOT! I tried to but I didnt have the strength and everytime that I tried to do anything my heart would race so fast that I thought that it was going to jump out of my body. My Cardiologist told me that when my b/p started to go up that my other symptoms would leave, well he was wrong. I am sitting here crying right now because I can barely see, I have brain fog to the point that it is hard for me to spell, and I am so weak and my legs hurt so bad that I just want to scream for someone to please help me! Even with everything that I have been through with this doctor, I actually believed him, now I just want to scream at him! He told me that he thought that all of my other symptoms were due to low blood pressure and as soon as it came up I would feel better. Well I am here to tell you it did not work! I have to call his nurse next week and I am going to let her know that it is not better. My b/p is up but that is all.Even though my b/p was up yesterday I was still having dizzy spells. So maybe my dizzy spells are not from my low b/p? I dont know I am just so upset this morning. A lot of it could be because I am not sleeping. I have tried everything. I even tried herbal tea to help you rest. Last night I stayed up as long as I could, and I forced myself not to take a nap, just hoping that I would sleep more than 3 hours. It did not work. I went to bed at midnight and was awake be 3 am. The ambien helps me to fall asleep but I sleep so lightly that my little dog jumping off of the bed will wake me up. So I am not resting at all,and I am exhausted. If I didnt have this support group to go to I dont know what I would do. Lose my mind probably. I wish that I could meet each and every one of you and give you a big hug and tell you how much I appreciate all that you do here. You all are in the same boat but you are here supporting each other in any way that you can. You are all great. I applaud you all, there still is compassion and caring in this messed up world. I appreciate each and every one of you. Thanks for letting me vent. I am going to sign off now I am crying so hard that I cant type. Vanessa

Hi Chrissy

I dont have the diahrea, I have chronic constipation. without meds I do not go to the bathroom. And they dont work all of the time. I wish that I had some answers for you. Hope you start to feel better soon. Vanessa

Hi. After months of constant vomiting and chronic diahrea, I have just been diagnosed with Gastroparesis. I would have never even known about this if it weren't for this Forum! I am so thankful that I can come here for answers. 2005 has been the worst year of my life. I received my official POTS diagnosis in August 2005 but became very seriously symptomatic in Dec. 2004. I am also waiting for the results of Lyme Disease testing. Also thanks to this forum and the caring people that participate in it and answer questions and recognize symptoms. We will see a Lyme specialist on Jan 12th. I feel like my whole body is shutting down. They suspect something called polycystic ovary syndrome as well and I am going to have an ultrasound done tomorrow. I just can't imagine what else can go wrong. Every time I go to another doctor, they add another medication to my collection. My heart rate has been staying over 130 even though I take Topral every day at 10 am. I need to call and see if I can take it twice a day. I have a very hard time with solid foods. I worry that eventually I won't be able to eat it at all and will need a liquid diet. I have read on the Forum that some POTS patients are on feeding tubes. I am curious if this is because you could no longer tolerate solids as well. What will my future be like. I can't even imagine what I will be like this time next year. I do accept my condition and handle it very well but I just don't understand how I can just keep going downhill like this. I do have alot of faith and I trust that God has a plan for my life. I hope I can get some answers for those who can relate. I would really love to hear from those with LYME and Gastroparesis so I can find out how you deal with each day. I do believe the POTS caused the Gastroparesis. And if I find out I have Lyme, I believe I have had it for many, many years and it is probably what caused the POTS. I may never know the truth about how this all came about. Thank you for your continued support!

Good grief, I feel for you. I know what its like to have gyno problems, I have been through it, and so has my daughter, but to have it and have the other problems is horrible. I know what its like trying to get the right meds. It is like russian roulette. The last time my doctor started adjusting my meds I had a minor stroke, and I know about the side effects too as I am sure most people here do also. They are sometimes worse than the problem. At first I was losing weight like crazy, but I needed to lose anyway so I didnt worry about it, but now because of the florinef I am gaining it back. I eat like a bird because eating causes such discomfort that I would rather not eat at all, but my family forces me to. I had gotten down to 170 from 240 in just a few months and now I am back up to 180 in just a couple of months. My orthopedist said that I have to get to 150 because my osteoporosis is so severe that the extra weight is going to cause me some very bad problems. I hope you start to feel better soon. I know how it feels to feel helpless in a time like this and your family suffering. My husband works 2 jobs, takes care of me cleans the house pays the bills and does everything that I used to do. I feel guilty all of the time. Hang in there though. It sounds like you have a loving and understanding husband and that is worth more than all of the money in the world. I dont know what I would do without my husband he is my strength. Vanessa

I know that I haven't written in a long time so I thought I would update things (really need someone to talk to). I am still having problems with the POTS, can't seem to get on the right medication. One will keep my pulse rate down but lowers my bp, the others cause to many side effects. My recent tests done shows that my uterus is the size of a grapefruit and there is 2 growths on my left ovary. I see a OBGYN next thursday to find out what they are and why. I have so much pain in my pelvic area as if my uterus is falling out. My back is constant pins and needles. I am down to 124lbs and being 6 feet tall I look sick. I can't sleep, eat, sit for long periods or stand. I feel like all I do is complain and someday my loved ones will get tired of seeing me this way. I try to hide all the pain, but I know you can see it on me. I still have shakes and get dizzy all day. Headaches in the morning and trying to not fall asleep during the day cause of my children. My husband takes good care of me, but I'm sure he is tired of hearing me complain, thats why I have turned to you.

Thanks for listening.

Sommer

Hi baby boy

My Christmas was ok, I spent the day on the couch I was too weak to do anything else. Although my whole family has come down with the flu. I was the only one that got a flu shot. Now there is so many people in my little town with the flu, that the government is sending more flu vaccines, so my husband will be getting one. How can you drink alcohol and be on meds? I would be totally scared to do that . I have not had a touch of alcohol since 1990. And I do not desire any at all. Hope you start to feel better soon. Vanessa

hi all. Its 4am and i cant sleep! Im actually using my PSP (portable play station)to surf the net from bed. I have the flu and my throat hurts very badly. Over xmas i had large ammounts of alchol and i think its to blame.......partley! how did everyones xmas go and is cold making u worse?

My Doctor puts me on Zyrtec when my allergies or sinus acts up. I can not take any of the over the counter stuff due to other problems. It works very well with me. Sorry to hear you are feeling so badly. I understand very well about the full blown attacks. I should keep the Zyrtec around for these attacks, but I dont. I only get the prescriptions in the spring, summer, and early fall because my insurance will not cover it so it is very expensive. Hope you get some relief. Vanessa

I am up tonight with a full blown sinus attack. even my teeth hurt. I can't take the over the counter stuff becuse of drug interactions. I had this at thanksgiving and dr said claritan d. well tonight its not helping and making me extremely dizzy, wide awake. What do others take?

Hi Jacquie

I know what it feels like for people to treat you as if nothing is wrong. The only family that is around me is my husband, son, daughter, soninlaw and grandsons, and they understand, because they have been through it with me every step of the way. The ones who dont understand is my friends. They never call me any more and never come by to see me, they cannot understand why I cant go to church. I have told them that it is not only the sitting but it is everything else. The fatigue, the lights the loud music the different odors, I cant handle any of them any more, but I still dont see or hear from any of them. I guess they are just too busy in their lives or something. I too had problems getting one of my doctors fill out a form. Finally my lawyer sent out a seperate form to each of my doctors,and as far as I know they have all filled them out. I know that if Social Security department goes by what my Cardiologist said I will get disability the first time. It is frustrating when you feel so bad and people treat you like nothing is wrong with you. Vanessa

I have seen many posts about families not understanding POTS and making comments that we must be lazy( I used to get those alot!). Know what bothers me the most...? No one in my family ever acknoledges (sp?) that something is wrong with me. They expect me to do all sorts of things a healthy person can do. It just gets frustrating...I'm not asking for special attention or anything, I just want ppl to understand that I really can't do some of the things they ask me to do, w/o them getting mad...Oh, I had posted earlier about how I applied for disability and all my specialists told me to have my PCP fill out the health insurance form...so today while I was sleeping I got a message from my PCP nurse practitioner for me to call her back. I put it off today because I know she's going to tell me I need someone else to fill it out, etc. etc. and I really don't feel like dealing with it...all I want is insurance to get these tests I need done....I guess I am asking for alot. Is anyone else having any of these problems?? I know someone out there must be LOL! Thanks for listening/reading/whatever you wanna call it!

Oh yes I will be following up with faxes, emails, phone calls, whatever it takes for them to take me seriously and finally see me. I have to do something all of this sitting around is going to drive me crazy. I have decided to make my son a scrap afghan. If I knit it I can do it even with bad eyesight, but if I decide to crochet it I will be limited, because I have to see my work to get it right. I have all kinds of scrap yarn that a friend gave me and my son is the only one that I havent made one for in a long time. My family uses them so often that after a while they have to be replaced. So at least I will have something to keep my mind off of everything. Vanessa

Wow, Vanessa,

You are really taking charge and that is exactly what you have to do when you have an illness that is not well understood by most doctors.

After giving everyone you contactacted a reasonable amount of time to get back to you, will you be following up each one with a phone call or email or fax or something until you get a definitive answer? My experience has been that follow-up is as important as initial contact.

In the meantime, waiting is like being in suspended animation. Since you have to live in the meantime, I hope you find something useful to fill the time.

The journey is underway!

Well I faxed all of the paperwork to Vanderbilt Monday,so now I am playing the waiting game. I also kept searching the web and found Doctors emails and emailed them pleading for help. One was delivered back to me because the email address was no good any more. But I am going to keep trying. I am so tired of not knowing exactly what is wrong with me. One time my Doctor tells me one thing and another time he tells me something else. So I am so confused I feel like pulling my hair out. I am not a patient person any more so this is going to be torture. If there were things that I could do to keep my mind off of things it would be different, but all I do all day long is to stare at the cieling or to watch tv and I am sick of tv. So I just will wait on a response from one of the doctors. I dont know where the money is going to come from to get there, but I guess it will just have to fall out of the trees. My husband told me not to worry about it that he would figure out something. Well it is hard for me to type this morning my eyes arent doing so good and my hands dont want to cooperate, and for some reason I am having trouble spelling. I guess my b/p is low. I havent checked it as of yet. So I guess I will go for now. Vanessa

Bamagirl, you can not give up. I too sometimes want to give up, but I try to find things that will take my mind off of how I feel. Do research, try to find a different doctor to help you,anything! I even started knitting again. I cant do it for any length of time, but it gets my mind off of things for a little bit. The one thing with my knitting is I can do it by touch. I dont have to see to do it. So my bad eyesight is not a hinderance. Try to find some kind of craft or something to do while you are lying down. But dont give up. Dont lose hope that it is going to get better. We have to hang on; to our hope always. No matter how bad I feel if I think about it I know that I still have hope in there somewhere. I am sending you big Hugs your way and a ray of sunshine to brighten your day. If you would like to PM me do so any time. I do know that the people in this little forum are great, and they all have big hearts and shoulders. This site is a valuable asset in my life. Keep posting, get all of the frustration out. It is better to be on the outside than the inside, as my therapist puts it. Hope today brings a better day. Vanessa

I feel like I am dying. I am the sickest person I know. Even as I read here there are mostly people who aren't as bedridden as I am. Maybe I am missing something? My vision is so bad I can't even explain it. I feel drunk or on drugs or something all the time. I am nauseaous every day, have nonstop chills, my skin burns, I have horrible adrenaline surges that make my hr go up to 200, migraines, tingling, dizzy, audio hallucinations, sleep paralysis. This has all gotten worse over the past four years. Does this mean I am going to get worse and worse? Are there any chances this will get better? Please if anyone out there has all these things to I really need to know how you are doing and how you cope!! I am not a fainter and my hr doesn't go up every time I stand. All my problems focus around these adrenaline surges that make my bp and hr shoot up. Please I need some support.

thanks everyone,

bamagirl

I am sending warm thoughts and prayers for a speedy recovery. Vanessa

Hi guys,

Valerie Fenston, who has done a ton of volunteer work with DINET, had surgery for Crohns Disease today. Please keep her in your thoughts and prayers as she recovers.

Thanks,

Michelle Sawicki

Hi Julia, I am so sorry that your brother in law had to upset your brother that way, and ruin your holidays. I know how it is to have family that is insinsitive and uncaring. It is hard to take but I know from personal experience that it happens all of the time. I have not talked to or seen my siblings for many years, due to their mouths. Before my Mom died she made me promise that we would all make up and stop fighting and get along. That was her one wish, and i tried, but they are louses and did everything possible to start fights. So for my own well being I just stay away from all of them. I know that your husband is embarassed, but he is not responsible for what his brother did. I send big hugs to you, your husband and your brother. Do everything that you can to bring some hope back to your brother. Tell his doctor what was said and see if He or she can intervene with some hopeful words. My prayers are with all of your family in this trying time. Vanessa

Hi Carmen, No my doctors have not mentioned it. My PCP is letting my Cardiologist do everything. My Neurologist doesnt seem to be doing anything. I think all of them are afraid to commit to anything. The only thing that my Cardiologist is concerned about is my b/p and the way my heart is acting, so Im all alone in the rest of this mess. I have to see my PCP on the third and I will talk to her about it, but she will probably want to send me to another specialist which will probably do nothing. Thanks for the advice though. Vanessa

Vanessa, have any other your doctors discussed saline iv therapy with you? This has helped me get through the times that you are describing. I have a permanent cathether which may or may not be appropriate for you. I would pursue iv treatment if you haven't already. It takes a lot of it to make a differrence in me- but it definitely works. Good luck!

Carmen

I woke up on Christmas Eve and I felt better than I had in months, so I decided to clean a little and do a little cooking. I didnt do much but evidently it was too much! On Christmas morning I felt worse than I had in months. I could barely walk to the bathroom by myself and as the day rolled on I couldnt. I tried to play monopoly with my grandsons but I couldnt keep my head raised for very long, and dinner was a disaster. I tried to sit there and eat with the family, but I finally gave up and just told everyone that I was full. I cant even eat anything anymore without getting waves of nausea. My gallbladder has been checked and it is fine, so I dont know what is going on. Every morning since Christmas Eve has been a struggle and this morning I get up and I feel horrible. I just want to scream. I even tried to post words of encouragement to others hoping that it would help me to feel better, but sitting here is making me feel worse. I am so tired of laying down all of the time. And to top everything off we have been invited to a New Years Barbecue! My husband really wants to go, because he is really close to the people that invited us. I dont know if I am going to be able to sit up long enough to go, but I know my husband. He will not go if I cant. He will say that he really didnt feel like going either, to save my feelings. I am so sick and tired of all of this. When is it all going to end? I want my life back, I want it the way that it was before! Where I was independent and if I wanted something done or wanted to go somewhere I just did it. I didnt have to ask someone to take me, or have to ask someone to do everything for me, I did it myself. I am used to being the one helping others. I cant take this much longer, and my therapist is out of town until the first of the year, so you guys are all Ive got right now. This is even affecting my Grandsons. The 12 year old is a nervous wreck, he always wants to stay with us, so he can help with me. His grades are falling, and I talked to him, he said that he is afraid that I am going to get sick or fall and no one is going to be there. (my daughter is packing up her house to move so I am alone alot now) I told him that I was going to be fine, but he said that he didnt want to lose me. This broke my heart. My grandsons are very dear to me and I cant bear to see them suffering. It is tearing me apart inside. i dont know what to say to them to make them feel better. Well my eyes are just about gone out so I better stop for now. Thanks for letting me vent. It has got to get better. I dont think that I could take it if it got worse! Vanessa

I am so sorry that you had a bad Christmas. It sounds like you were in pretty bad shape. I too had a bad one. Hope today brings a better day. Vanessa

hello all... I hope that you all had a merry christmas!

for the whole 10 minutes that i could sit up on christmas that was good!!.. christmas its elf was very nice.. but the potsy grinch came and stole my health!

OH MY! I woke up about Noon yesterday and did not feel well at all.. tried to sit up and enjoy things.. and I couldnt... I was so fatigued and syncope feeling.. I went back to bed.. and that is where I stayed till well into the evening.. got up for alittle bit.. had actually started to feel better alittle.. tried to cook dinner. had trouble with that.. and spent the rest on the night on the couch under the blankets... around Midnight I started to feel really realy bad.. nausea.. SOB.. some very messed up tachy... blurry flaoty vision.. and that potsy head feeling..

my heart actually felt like it was stopping.. then it would be very fast.. and this went on for 5 hours.. I felt like death warmed over! i had my BF check my pulse.. just to check for himself and confirm what i was feeling.. and he couldnt find a pulse.. then it spiked and dropped back to non-exsitant.. think that it is safe to say that it was irregular...

so i had him get the BP machine.. my BP was low.. But I have had it much lower and actually felt better then I felt with it at 99/57.. for me that isnt real bad considering how low it can and has gotten in the past.. and my HR was all over the map running between 94-170..

so needles to say I felt like poo...and just needed to vent that i feel like poo..

I was tempted to call the on call cardio or go to the ER.. but it was christmas and I ddint want to interruppt anyones holiday night.. and the ER.. forget that!!

adizzygirl

Congratulations!!! You have a keeper. If he will go through all of this with you, and still stay around He is a real MAN. Not many men will do that this day, they all seem to run from trouble or responsibility. You have been blessed. We all needed this good news to cheer us up. Hats off you to and your Fiance!!! What a wonderful Christmas Present. How romantic. Here is wishing you many many happy years together. Vanessa

Hey everyone, I hope it's okay to share this since it isn't all POTS talk, but for those of you who remember me (LOL, I rarely get a chance to post anymore) I wanted to share my news. David, my boyfriend of 6 years, has actually popped the question and proposed to me on Christmas Eve.

After our boys were in bed and Santa had done his job, he asked me in front of the Christmas tree. It was awesome. I cried and laughed and said YES of course!!! I am thrilled. After haveing two beautiful kids together and going through what we have with POTS, I feel so lucky that he's still around. There were times when I was very sick and I wasn't too sure he could handle it, but he has proven otherwise.

I hope you all had a wonderful Holiday (personally, it's a bit of a releif to be done with all the preparations, but we had an awesome Christmas at home this year!!).

Also, I got a digital camera and I took some pics of the baby today so here they are:

http://imagehost.vendio.com/preview/ge/get...05alex6mos4.jpg

http://imagehost.vendio.com/preview/ge/get...05alex6mos2.jpg

Ethan would not cooperate so I did not get any of him to post

It doesnt matter if my b/p is low or not. My temperature fluctuates from cold to hot, and I better not be standing up or walking because I am going down one way or the other. I feel faint and nauseous when my temperature starts acting up. It seems like I always keep this funny feeling in my head lately. Vanessa

So, once again I got very hot and thought I was going to pass out. I feel very hot and my skin gets flushed but my skin doesn't feel sweaty..? I got the funny feeling in the head and my legs felt numb while I was walking. Is this from the low bp probs? Also, can these symptoms happen if you have POTS even if your bp isn't too shabby that day?

Hi I dont know if the meds are causing it or not. I only know that before I was on any meds at all, I either couldnt fall asleep and if I woke up for any reason I didnt go back to sleep. Still to this day even being on Ambien, some times I can not fall asleep and I dont sleep but three to four hours a night. Makes for a very long day with nothing to do but watch tv or stare at the cieling. Wish I could help more. Vanessa

hi

Trying to figure out if this is being caused by dysautonomia, or the mestinon I am taking. I have no trouble at all falling asleep at night, but if I get woken up, I'll generally remain awake for hours (only to be exhausted the next day bringing the inevitable health crash)

I'm not yet taking steroids. Could the mestinon be doing this? I take 60mg 5 times a day.

thanks

ariella

On Friday my Cardiologist office called me and told me that the Doctor was not finished with me when I left. I thought that he was. He said that he would see me in three weeks and to pick up my appointment at the front desk. So that told me he was done. Any way the nurse told me that he wanted me to split the midodrine pill and take it twice a day and to take one florinef pill twice a day and to be sure to call her next week with my b/p readings for the week. And to also stop taking my Neurontin. I can not stop taking my Neurontin, ever since I had back surgery I have horrible nerve pain in my right leg. It is the only thing that stops the pain. She said that the doctor said that it will lower my b/p. Well duh, I know that but my b/p was low before I started on this medicine. I am not going to stop taking this until my surgeon tells me to or at least when I wake up and there is no more pain. I just hope and pray that I can get into Vanderbilt. I am so very tired of messing with doctors who are in over their heads. Dr Richards is a great Cardiologist, but he has no clue when it comes to my problems. I dont know whats going on any more. On Christmas Eve I actually had a good day, the first that I have had in months. I thought alright. Christmas is going to be pretty normal for me, NOT, I woke up on Christmas and was worse than before. All i did the day before was to cook an apple pie, it was canned and the crust was premade, and I set the table. Then I was in bed the next day. I felt so horrible that I could not enjoy even being with my family. So I guess this medicine is not working. My b/p is still very low and my enery level has bottomed out. But Dr Richards said that this medicine would help me feel better. Well he was wrong. I only got a few hours sleep last night and I feel horrible this morning. My b/p is very low and i am straining to see the computer screen, but I am tired of being shut in and this is my only out any more. Unless I have to go to the doctor. Thanks for letting me vent. Hopefully this next week will be better. I couldnt take worse right now. Vanessa

It is a shame the way that people are treated if they do not have insurance. It happens all of the time. It burns me up, its like if you dont have insurance your life is not worth saving. I went through the same thing. As I am sure a lot of people have gone through it. It is humiliating and degrading, but what can you do. Around here if you do not have insurance the doctors will not see you. My PCP is the only one that I know of that will see you if you do not have insurance. My Cardiologist wont. If you do not have insurance they will not even make an appointment for you. When I first got sick I did not have insurance and I was treated like trash at the hospital. When I was admitted to the hospital the firsts two times I did not have insurance and here I am sick and in the hospital and the clerk comes into my room and is very rude and demands to know how I am going to pay the bill. I just started crying and told her that I had no idea, she actually told me that tears were not going to cut it. The third time that I was admitted I had insurance and the same person came into my room to make sure that all of my insurance information was correct and she was so sweet and nice that it made me sick to my stomach. We did not have insurance for years because it was either pay the insurance premiums or pay the rent and utilities, so you know which one we did not have. I feel for you, the way that you were treated was horrible. What about their oathe does that not mean anything anymore. I guess it is only good if you have insurance! I would see about seeing another doctor, and tell the doctor that sent you how you were treated and see if he can refer you to someone else. I would not go back to a doctor that only cares about getting paid. He is not in it for the right reason. At least they could have been nicer about it. I would also write to the AMA and complain, also the HIPPA act. What they did is against the law in our state. You can not talk about any patient where another patient can hear. And if you heard I am sure that other patients heard also. I hope that you can get into another doctor. Sending you a great big (((HUG))) Vanessa

Hi guys. So today I had an apptmt with an endocrinologist which my cardiologist wanted me to see. So right when I walk in I am given a form to fill out and the lady asks for my insurance card, so I told her that right now I don't have insurance but I should w/i a week or two because my doctor is filling out some paper work so I can get insurance. There were 3 receptionists, maybe one was a nurse. You'd think that by not having insurance I was some piece of trash. They were telling me that I should really reschudule, even though it took me 3 months to get into this doctor, "since I don't have insurance." I wouldn't have been so bothered so much if they had been nice about it but they weren't. I told then that I have no problem with them billing me, it was fine. So one of the 3 women says " you know you have to pay it, it's like Filene's, you buy soemthing then pay for it." I coulnt believe how nasty she was when she said it. I was shocked and had no idea what to say. So the whole time I was in the office room (1.5 hours and I only saw the doctor for 15 min, he kept coming in and out) I could hear them saying "it figures only the ppl w/o insurance show up for their apptmts." Obv they were saying something about me and its rude. The doctor was no freakin help. He wouldnt do bloodwork because " I have no insurance.' So he told me to get all my medical records and bring them back to him and he would "figure something out because I'm messed up." So all I basically got out of this apptmt was that my thyroid is enlarged, not a clue what that means and my potassium levels were low in October... oh yeah I also learned that if you don't have insurance you don't matter in his office. Anyhow, after I finally get out of my apptmt my mother and grandmother were in the waiting room and said that they were saying stuff about me and then looked out at my mom and grandmother then shut the sliding window. I don't even want to pay for this stupid visit. Sorry, but that really just made me feel like S---!

I can tell if I am going to have a bad day as soon as I wake up. Some times my brain feels like it is sloshing, or I will have surges of tingling all over my body, or I just cant get out of bed. There are other ways that I can tell, but I just cant remember them right now. My vision is always worse in the morning. I dont know why. Although sometimes it even gets worse as the day goes along. I too have very sensitive skin. It doesnt sting or anything like that . But if someone just touches me sometimes it actually hurts. If I move to fast I get surges of tingling, I also have over sensitive hearing, sudden noises or even loud noises will set the surges off, it is very frustrating. hope you find your answers. Vanessa

Can you guys tell what kind of day you are going to have by your vision when you wake up? My vision is blurry, and my heart rate is up this morning. I know it is going to be a bad day today, I can feel it. Also, who has skin hypersensitivity? My skin feels like it is burning and stinging at times. Hope you all feel better than I do.

Merry ****** Christmas!!

Sorry you are having a rough time of it. I dont know anything about the T wave, but I do know how it feels to be just pushed aside in the ER. I had to go to the ER in October, I ended up having a minor stroke and the stupid hospital sent me home. They diagnosed me with a general headache. My Cardiologist now told me that any time that I have to go to the ER to call him first and he will call ahead. I dont know about law suits though. All we have ever done is to complain to the Administrator which nothing was ever done. A couple of times we didnt have to pay the bill, but that was all. Our hospital has been sued over 100 times just since they opened their new building, and they have lost every suit. All of it was for neglegence from the ER. You think they would get the picture by now. I think that they have a red flag or something on my file because of my last doctor, so they dont take me seriously. When I was in the ER the last time the blood work even showed that my heart was under stress and was being damaged, but they still sent me home. Maybe if I was dehydrated they would have admitted me. I know they did the person in the bed next to me. My biggest advice to you is to seek the advice of an attorney that specializes in these types of cases. They will know what is the best course of action. Hope you get some answers. Vanessa

Hi all,

First, I'm sorry I haven't been writing. Things have been very bad for me lately, but I promise to catch up with everyone once I begin to improve.

I really need some advice though. A few days ago I had a very scary episode that sent me to the hospital via ambulance. When I got there the doctors ignored me, didn't even do an ekg, or take my blood pressure, or even LISTEN to my heart! and sent me home eight hours later with a "chest pain" diagnosis.

I went to my new cardiologist the next day and it turns out my ekg is abnormal (more than before). I have an "elongated T-wave". He didn't really explain what this meant, and said there was no point in exploring it fruther since I'm going to vandy in two weeks, but now I'm terrified. I've been having increasing chest pain and my crashes have become more "violent" in nature ( higher tachy, numbness, paritial paralysis etc.) This may sound silly but I'm worried I'm going to die.

First, does anyone know what the implications of an "elogated T-wave" are? Also, I'm considering suing the hospital I went to for negligence, does anyone have expierence in suing? I've never sued anyone before and don't even know where to begin.

Thanks so much for any advice and prayers you can offer.

Merry Christmas,

Lauren