StaceyYount

Hey Blackwolf I wondered when you would chime in! It is too funny that you remember that look too becuase Jim and I always crack up at that. Apologies to everyone for the off subject this is just to funny! As Pop says..The Moon brings the woman to the man... am I on the right track here?? It is interesting the man who wrote this also wrote Joe vs. the Volcano (moon big theme adn naother favorite movie of mine) and a play Jim and I saw years ago that we loved called Italian American reconciliation. Funny but it was not until a few years ago when I found that program and realized it was him. Ok sorry rambling. Jim could not remember the Grand Ticino Hope everyone is having a good day! Wish we all lived close enough to have a Moonstruck party! :-) Stacey :-)

Thank you! My sed rate was 55. It has been as high as 111 but that was years ago. Had not had a sed rate done in awhile so the 55 was surprising. Miriram--your posts are always so helpful thank you . A question are they treating your vasculitis seperatly(sp?) or as an aspects of POTS..I kind of figured that it would all end up to be POTS related, it always has but since it was a new thing I thought I should investigate. Think I still will. the problem is that I live in a small town and most of the doctors have no concept of POTS and so like you said informing them is the important thing. Ok I will gird my loins(whatever that means ) and make the appointment. It is with a rhuemtologist. Thanks for all your support Stacey Michelle S. the board really needs to add a spell checker!!!

Hey! When I read your response I cracked up!! And then I told my husband and he cracked up and could answer word for word too! Can you tell we have watched a few times???? Sorry Castirini is her maiden name her married name was Clark :-) (But I didn't know that until a couple of watchings ago) :-) 3. A rock and killed myself years ago...(scary I can hear her say it in my head!) 4.What you talkin I love flowers. Thanks Carmine... I could go on and tell you that whole scene. Maybe I have watched it toooo many times :-) Love Nicholas Cage!!!! Ok The bonus question: What is the name of the restuarant were Johnnny proposes? Hope everyone is having a good day! Stacey :-)

Hey Pam, Another Moonstruck fan! My husband and I have watched it so much we can quote,Just for fun lets test your moonstruck knowledge...(brain fog taken into consideration) 1. What is Lorettas last name? 2. You got those bad eyes like a ...... Sorry my brain fog is kicking in and I can't think of another question. Colin Firth is mine everyone back off!!! Stacey :-) And Blackwolf my Dad and I have read nearly every Piers Anthony! This is the first time I have ever seen anyone else who like those books. And you crochet too! cooool!

HI, First side note: My dad is still at rehab but I think the infection is clearing yea. But today my post is to ask your opinion. We all know how POTS can give you some symptoms on one day and another set another day as well as the ones we have that are always there. Anytime anything new pops up I try and remember Mighty Mouse's rule of 4 days. I have been at this POTS thing for 9 years and lately a few new things have popped up that have not gone away. So I went to my primary care doc and said ok what about these things. He ordered some tests and we got sort of a result. Anyway here is my question. The new things are spells of coughing, diarrhea and stomach cramps, new rash seems to be what happens when there is inflammation in the vascular system. I have also had much more joint pain and stiffness in the last year. And my digestion is just always a challenge. Anyway sorry rambling a bit tired.. my sed rate came back elevated. Now all through out this illness I have had high sed rates and doctors have always sort of brushed it off. So I guess my question is if you had a high sed rate and symptoms of vasculitis but are not sure would you brave a new doctor? I just don't want to go through all this and end up right back here with no help and dealing with it. My husband says we have got to go in there with the attitude that this probably won't tell us anything but lets go anyway. I always get the idea oh look a result now they can fix something. Or a new doctor he will help. And usually I end up crying on the way home. It took 3 years to get my POTS dx and still the other day an orthopedic guy said, so why the wheel chair. I explained and he looked at me and said well I've never heard of it. (Sorry mini-vent) Ok so if you can get thorough this rambling I will state again and try to be clearer. Have had new symptoms for awhile, seems to be some sort of vasculitis, high sed rate but have had the high sed rate before. Is it worth it to investigate? My husband just said that the collective wisdom and knowledge on this board is probably better than most doctors! Thanks, Stacey :-)

Thank you! I needed these today and for the coming weeks! Stacey

Heeeeelp I'm drowning!!! I'm falling into the pit! Sorry but it just been unbelievable. He is in the rehabilitation home and my wonderful husband went down there and checked it out and it seems ok. Not great but ok. My Mom has taken the day off and my sister is on call and can't go down there. So hopefully everything will be fine. I am exhausted and trying so hard not to vent to my family because to be honest that would take more energy than I have. I am going to take tonight off and see were we are tomorrow . Sorry but argh!!!!!! I don't have the energy to deal with this! Plus my gran came to stay with me and help me watch my niece while my sister was at a meeting but it mostly me. Don't get me wrong that precious girls hugs gave me more happiness than anything but she is 3! But we spent a lot of time siting on the bed watching Sleeping Beauty the ballet for the zillonth time! I am corrupting a new generation . HAHAHA Ok I am losing it. I am going to go crash and wait for my sweet husband and tonight the phone is not on unless they leave me an emergency message. At least I hope I can do that. Thank you for letting me vent about this it is not really a topic about POTS so thanks. Hope you are having a good day and that you get an extra hug! Stacey

Unbelievably they are transferring him to a rehabilitation center today. He just started on the antibiotic yesterday. He is still very confused adn out of it and the infection has not cleared up at all. My mom is losing it and my sweet sweet husbnad is going down there to see what he can do to help. He is going to make sure everything is being done right at the rehab center. I am so mad. Dad is not ready for a rehab center but the hospital needs the bed. ARGH!!!!!!!!!!!!!!! My family is all losing it and my sister well I won't go into that now or my computer might explode from the steam coming out of my ears. hahahaha Anyway I hope this is a good place adn I will feel better when Jim is down there I am just sorry that he has to go. Sorry but looks like I need your thoughts a little longer. I thank you again for all you have said so far! Stacey ( I think putting those in is making me feel better!) :-)

You guys are truly truly the greatest. You can't know how much it has helped me to know that you are out there. Since I am still the main one everyone calls to help them deal with this it is so wonderful to know that I have you guys to help me. So I thank you from the bottom of my heart! The update is that the hospital did not give him his Parkinsons meds until 6:30 last night . He had not had it for over 24 hours. Arghhh! He was really confused this morning which threw my Mom but when the doctor came in he said that it was becuase of the infection and it would get better. They have figured out which bacteria it is so later today the will start him on the particular antibiotic he needs. The hospital doc said that had to wait for the blood doc to order it. Though they know which one to give him. Weird but I really don't understand hospitals and their policies at all. We are still not sure how long he will be in there and whether they will send him to rehab before coming home. Mom is exhausted but she has been so great! Poor Dad this has been awful for him. But hopefully he is on the way to recovery. I Thank you again, Stacey :-)

Thank you. I just got off the phone with my mom and the infection has gone to his blood. They are treating it with antibiotics so hopefully they caught it in time. The thing that makes me the most angry is that he did not have this infection before he went into the hospital the first time, he got it while there. They treated it but then sent him home and his primary care doctor never checked for it again even when he went to see him because of urinary incontince(sp?),so I don't think the urinary tract infection ever went away. I have decided that most doctors save a few have no idea how to do anything but give you a bandaid and they let the nurses do that! I need your prayers even more now. Thanks, Stacey

Hey, My dad was taken to the hospital again last night and he is not doing so well. It is about the same as last time but he had a 103 temp and a bad kidney,bladder infection. He is completely out of it and I am not sure what we are going to do. I need your thoughts and prayers for him and if you have any strength left over maybe you could send it to me so I can deal with all this and all the phone calls. I am not complaining but it is tiring. Thanks, Stacey

Hey, Just as a side note my bp drops but very slowly, on my second TTT it went from 110/60 to 0/palp??( or something like that I don't remember the exact number). Anyway the blood pressure drop took the whole TTT time. But my heart rate went to 185 by the end of the test. So you may not have the immediate drop it just may slowly drop the longer you stand. There is some article about that somewhere were a subset of POTS patients have the slow bp drop. But the brain fog is deep and I can't remember were I read that. Hope this helps, Stacey :-)

No Debbie and Persephone I am sorry but as I have stated Colin Firth is mine so you two just stop!!! (though his wife might have something to say about that!) This is a great idea to introduce ourselves to each other. Stacey :-)

1. Guess I can't make up a name since you all know its Stacey :-) 2. Ring Of Endless Light Madeleine L'Engel 3. Sorry but Colin Firth is MINE!!!!!!!!!!!!!!!!!!!!!!!!! Favorite movies couldn't decide which one Persausion,Pride and Prejudice (mine mine mine), Moosnstruck and Say Anything 4.Things that make me happy, my husband Jim, crocheting, watching romances, playing with my niece Sofia and being with my family, getting letters from Litty. 5.We sponsor a child in India named Litty, who is 12 and the sweetest girl you could ever meet Oh and I can cross my little toes over my fourth toe. Impressive huh???

Yea Emily!!! Now all of us with that worry gene can relax! Thanks for posting the update! Hope the recovery is short and you are better soon! Can't wait until we have you back here, we will miss you! Sending you love and happy thoughts! Stacey :-)

Hey, I get those exact headaches. I think some of the others do as well and I am sure they will post too. I have been to so many headache doctors, neurologists and tried many things. Now the only thing that helps is an injection of Demerol and phenergan. It usually eases the edges, puts me to sleep and in a day or 2 the headache will go back to bearable. Butalbital use to help me too but they stopped because of the fear of rebound. I don't think it gave me rebound headaches but the thing is with that and most meds you have to take it at exactly the right moment (which changes headache to headache) if not, it does not work or makes it worse. Sometimes when the pounding starts taking 1 excedrin will stop the pounding but again one time it will work another not at all and another it will make it worse. One doctor said that they were vacuum headaches but no one else ever said that. This is one of my biggest problems. I just wanted you to know you were not alone and that if your doc will allow the Demerol phenergan can help. I have to go to his office to get the injection but it helps so I don't mind. In the worse cases one side will start I will get an injection feel better and then it will switch sides. Last week it started on Sunday got injection on Monday by wednesday switched sides and since I had an appointment on Friday anyway the nice doctor gave me another. ( that is rare usually one shot per headache) My theroy is that instead just one type of headache I get three and then if they all gang up one me I'm doomed! No migraine med has ever made a difference but that is me in some cases it helps others. I could go on and on about headaches but I don't want to give you or me one! Stacey :-)

Hey, TPN is Total Parietal Nutrition. After having a naso-gastric tube twice with no help and after they finally found the small bowel dysmotility, with a horrible test, a small bowel manometry they started me on TPN. The put a catheter(i think) in your elbow artery ( again I think) and it feeds up into your heart. Then liquid nutrition is pumped in. I was attached to the pump 24 hrs a day at first and then only at night. I had it about 3 months and went from 84lbs to 114. During that time I slowly started eating little bits again. Before I went on the TPN I was not eating anything. Someone more medical might be able to explain it better. A home health company brought the bags that were attached to the machine every week. It was a picc line that was in my elbow to my heart. It did get infected slightly and had to be removed. A second was placed here at home but it was not done properly, there was to much line and the contractions of my heart actually drew the line in and it was curled around in my atrium. ( I think or something like that) After that the line was removed and I slowly began eating again. I was very very out of it and am not explaining this well. But basically it is a line that is placed through your elbow and into your heart were they pump in nutrition. Still not a great explanation but you get the idea I hope. Stacey :-)

Hey, If you can, it has helped me and I think a few of the others, to write out what you have experienced so far and give it to him before your appointment. Like tomorrow send it to his office so he knows what to expect when you are there. Also I think if you are very organized and have a list with you it makes the visit go more smoothly. Actually when we went to see my regular GP on Friday we took a list becuase we had several things we wnted to talk about and he even said he appreciates us being organized. So if you can't get the letter to him before hand take it with you. Might save soem time on the background stuff and get to the stuff you want to highlight. Having someone else there is always a help, sometimes Jim can explain things better than I can. If nothing else we take articles with us and last time pictures of micrscope slides that Jim(true love!) had taken, anything to try and show you know about things and that you have a direction. Does that make sense? Stacey:-)

Hi, I am having a terrible time with this. Had to stop wearing my wedding rings because my fingers would swell so much. (Wearing them around my neck on a chain Jim says its like we are going steady ) My chinese doctor is very concerned with this and it is amzing how one day my legs look so heavy and another day you can see bones. In chinese theory it is that the fluid is not going to the right places and not going out like it should so she gives me herbs and accupuncture. She says it is also a sign that the lymph is not moving like it should and has suggested a lymph massage. Haven't tried that yet but probably soon. The one thing that does help is to rub upwards on my arms and legs to help get it moving. Sometimes that makes quite a difference. But it is very very annoying. It is amazing to me that so many times I come on this site and find out that others are experiencing things that I am,having symptoms that drive me crazy that I would never have contributed to POTS. As Nina always says we are not the average bears. Stacey :-)

HI, I was on the octetride years ago. They put me on it to regulate the dysmotility in my small bowel. But to be honest I could not tolerate the injections. So we stopped it. I really don't think it was helping . I was down to 84 lbs and they put me on TPN. Slowly I was able to eat more and now can eat enough to maintain its just hard. I did not have the tachy after eating I don't think but at that point I was very out of it! One thing that kept me going and eventually I wa able to drink was fruit milkshakes. Jim would make me one everyday and at first he was adding protein powder which is yucky but he snuck it in when he could. Ensure is ok and I drank that. But since mine was more of a digestion problem I am not sure these things will help. But since I did have experience with the octetride I thought I would respond. Hope I helped and feel free to e-mail me if you want. Stacey :-)

Hey Thanks for the responses. Went to the doc and he was helpful but only as we asked for certain things to be done. But at least he is very good with that. As I was looking things up about my rash I came across some information about vasculitis. It seemed to have some of the new things that are going on with me and my rash seems to be what they are talking about. The most interesting thing is that one of the test for vasculitis particularly Behcet's syndrome is called a pathergy test. They prick you skin with a needle and if 2 days later you have a red bump that is a positive test. Several times after I have had a acupuncture treatment I have had red bumps were the needles were and they look exactly like the positive pathergy test. So off for lots of tests and hopefully some answers. Though I am trying not to get my hopes up because usually after all the tests it ends up that it is just part of POTS. Anyway does anyone know anything about vasculitis? Particularly systemic vasculitis? Also just a side note, I have had terrible stomach cramps and bouts of diarrhea and since Jim teaches microbiology and has the equipment he did an o&p on my stool (gross I know what a husband I have) anyway he thinks he found some parasites and my doc was convinced enough to put me on Flagyl. Jim printed out copies of the microscope slides and Dr. G joked what that he was going to write a book ?What the Younts brought on their visit? :-) So we will see. Also have to go for a pulmonary function test because of cough. Lots to do lots to do! Hopefully something will come of some of this and I can at least get out of this hole. Gave my doc one of the bracelets and he really liked it. He is great because if we come in and we want to try something he usually says yes. And sometimes he will prescribe an injection of Demerol and phenergan for my headaches which eases the edges and I can sleep. I am not making much since sort of a ramble but wanted to let you know what the doc said and see if anyone else knows about vasculitis and if anyone else has it and if anyone know a relationship to POTS. (run-on sentence or what). Ok enough rambling if you can get through this post and can help I would appreciate it! Stacey :-)

HI guys, Sorry I am sure I saw this topic somewhere but could not find the right post and I am in a POTS hole with a horrible headache and neck pain. But my question is that yesterday I noticed that on my arms I am getting little pin point red spots all over on both arms and a little on my legs. Now I usually would not think much of it but it seems to be getting worse. I thought I had read somewhere that someone had something like this. Any ideas? It is just a minor thing i know but whenever something new pops up I like to know what it is or if it is POTS realted. Tomorrow I go to see my primary care doctoor with a very big list and hopefully he will help me with this headache. I get them all the time but this one started on Sunday and has not eased yet. Arghh! I am thankful that you are all out there and want you to know that even if I am not posting I am here in spirit its just that the spirit is to tired to post Stacey :-)

Hi, I'm adding this before I read all the posts ( I typed it in before I saw all the responses) so forgive the repeats. I was looking through my videos and dvds and here are some of my favorites: Blow Dry Love actually 13 going on 30 Serendipity Tortilla soup What a girl wants Bend it like Beckaham Strictly Ballroom-- one of our favorites Shrek and Shrek 2 Say Anything ( I am an 80s girl so anything with John Cusack! Love him!) :-) Moonstruck-- Probably favorite movie of all we have watched so much we can quote it! The Matchmaker Galaxy Quest Truth about Cats and Dogs Whale Rider Possession Lord of the Rings 1-3 Great! Harry Potters of course {:-) em} Ella Enchanted Any Jane Austen: Persuasion Sense and Sensibility Pride and Prejudice Mansfield Park Ok that?s enough for now will add more when I see ones or think of others! This is so fun! Yeah! Stacey :-) Just to add I jsut read the other lists. Great suggestons! Blackwolf maybe someday you can expalin spirited away to me loved it but did not get it!

Hey, Taking Emily 's idea I thought I would start a movie topic. We could kind of list some of our favorite movies and when we see a good one we can add it to the list. We are all so resourceful aren't we?? The main reason I decided to start this was that I just watched a really cute movie and wanted to tell you guys about it. "Wimbledon"-----Kirsten Dunst and Paul Bettany Really cute and I liked it so much I will probably watch it again tomorrow ( which of course Jim will laugh at me for) But I was so worried about the end. So now I know and know I can watch it again happily. Really cute! I have more but thought I would start off with this one! Stacey :-)

Hey! Glad you are going to get that test. I hope the result will give them a way to give you relief. Now about movies: Many of you may know about this but Netflix is wondeful. I can spend a day looking for movies and shows I want to see and then put them in my queue and they send me out 3 at a time. They have a great selection and the best thing is that the movies come to your house you can keep them until you have watched them ( in some cases 3 or 4 times ) and then you just stick them in the mail and they send you more. No more of sending Jim to the video store and have him coming home with well I think you 'll like this or I could not find a thing. I did not realize they stocked shows to and so I am getting caught up in popular shows that I never saw. We watched Delovely the other night and all though sad, it was wonderful. You get a free trial and I have been very happy. The nice thing is that they have a lot of ways to search for stuff. No I don't work for Netflix I promise!! Hope tomorrow is a good day for us all! Stacey :-)