all4family

Thank you all for your support and encouragement through the good times and the bad. I am still going strong, but today was a hard day. Just hoping it's a speed bump! Especially because My entire kitchen is tore up! It would be really hard to take the disapointment of feeling so much better to land back on my butt again. Jana, I will write you about Phoenix tonight. Does anyone know if it is common for feet and legs to swell? I know I was told not to worry about my heart, because my feet were not swollen...well now what? Suzy

Hi Everyone! Sorry I haven't been around lately, I have been doing really great! It started a couple of weeks or so ago, I can't really remember, when I felt better and decided to build a firepit. I had a bad episode, and thought that was the end of my good health, but it wasn't! Just a minor setback. I am remodeling my laundry room, kitchen, and going to lay flooring in my livingroom!!! I do still have some symptoms, which would probably would seem severe to someone without pots, especially if I overdo things which I am doing pretty much every day. But to me the symptoms are nothing compared to "my normal"! I also have had swollen feet and legs a lot through all of this, which I never used to have problems with. But all in all I couldn't be happier. I am hoping this will last. I felt faint and strange for a few hours the other day, and got real panicky thinking oh no, that was it, it is coming back. But it passed, and I was able to get back to having a life!!! My husband and kids have been sick with flu like stuff, so I am REALLY hoping not to get that, because I have a heart valve that leaks and I heard if you have any of that kind of trouble and you have flu symptoms you should go to your ER right away. But so far so good. I hope everyone else can have some great days like this. It is like getting a health present!!! If you don't see me a lot it is because I am still doing good! Just wanted to share some good news for a change!!! Suzy

Yay!!!! I am so happy for you...There are so many other benign things it could be! I was even told you can get a rash like herpes frome yeast infection. Don't know how much truth there is to this, but at least that is easier to deal with! Have a happy stress free day! Suzy

Janie, Thank you so much. You are such a sweet person to come back and ask me how I am today. I am having a better time, as long as I stay down, and that includes sitting. I don't even seem to be able to sit today, as I have tried. But I will take laying down and feeling ok over laying down still feeling sick anyday. That is so funny, but scarey about the money! If I "accidentally" paid too much to our mortgage we would never get it back!!! I totally understand why you don't work. I cannot imagine trying to hold down a job. Even something simplistic would confuse me. Especially if I had to stand! Nursing is hard work. I have gone down the list of different jobs I could apply for, but have found that I would have a problem with all of them. Maybe one day there will be a great job with a bed, that you only have to do the work when you feel up to it!!! I would qualify!! Take care. And thank you so much. Suzy

Thank you all for the support, and sharing your experiences. It really helps to know that I am not the only one to feel this way. I definatly needed rest. I was trying to reply last night, and somewhere during the reply I fell asleep on the keyboard. I have no idea how many sites I visited in my sleep, but I woke up still on the computer. I had a blank screen open which was fitting, because I was blank! I was supposed to go grocery shopping with my mother this morning, and even though I used my wheelchair, I still got real bad in the store. Seems how it was a store I fainted in before I didn't want to take chances, and had to cut it short. But before I did I was circling the store in confusion trying to remember what I was there for. I would look at my list, and as soon as I tried to find the item, I forgot what the item was! Katja, yes. Drunk is a great description for this. I often wonder why people drink. I think to myself you can have this. I will be the sober one! If only we could choose! I am glad you found something that helps though. bjt22, I find that my family is also usually the first to notice I'm not doing well. I guess they have seen me hit the floor enough times, and don't want to go there again. They were asking me yesterday if I was ok, and I wasn't understanding, and just kept yelling what?? It frightened me when they talked, because I couldn't grasp what they were saying. I like that. The OTHER brother! made me laugh! Hi Rachel, The last doctor I seen about OI, moved, and I haven't talked to another doctor about OI specifically since. It helps to know your doctor said that, because the advice, (feels like critisism) I get is to "get moving, and your body will get used to it" . That helps! So I am stuck between what to do to feel better. That is funny about the apartment and your son, but sooooo true! I have looked at my husband, and all I could think was why is this man talking to me, (and I wish he would shut up!). Thankfully he doesn't get offended by it anymore. Hi EM, I am sorry you are having these days too! Maybe if we go hang out at our local bars no one will notice Ha Ha!! Yes that is exactly how I feel. I am re-traumatizing myself. The fear that we can go back to our worse days is more then I can bare sometimes. But like you said having a POTS family here makes it a little easier. Thanks for the support. Hi Houdinicat, your cereal story is so funny!! And the worse part is I totally relate!! Getting lost in the kitchen is so easy to do! And only somone on here can relate so well to that. I think that is why I like small places. Less to confuse me. Here is to more clear days with some cereal, and ummmmm....oh what was that stuff....might need to scroll down!!! Ha Ha! Hi Jana, It is so scarey to feel this way. I had people try and convince me for a long time that I was losing my mind. And this did not help to bolster my confidence that I wasn't. But luckily I had a counselor at the time that said I was fine. I feel like I am pretty inteligent too, and when this happens it makes me think gosh what is wrong with my brain, why can't I get it to work? I know I want to. I think I try to hide this symptome the most. Thank you for the support. Summer, Thank you for sharing that. I feel really lost in big stores. I usually end up making some excuse like I didn't sleep well. But people look at me strange. Especially because I sound drunk because my words are slurring, and if I am standing, or even sitting I am swaying. Does anyone else do that where there body just naturally stands crooked? Thanks for sharing that. Futurehope, thanks for that. I will have to try that. I always say I am tired, but I don't think it explains it. Thank you all for your support. Instead of getting myself worried about well maybe it is this or this, or maybe I will never get better I am able to today rest and say to myself well everyone else on dinet goes through this too. So I must be fine. (as fine as any of us can be!) I can rest, instead of trying to find a solution. The solution is obviously rest!! Sipping Gatoraid and lounging around for the rest of the day!! You are a wonderful group of people who truly have great compassion. Thank you!

Hi Mae, That is exactly what I think I have been doing..trying to live a normal life. I get the confusion and brain fog on a regular basis also, but tonight I was unable to control my speech, and legs. I've had that, but this time I didn't come back for a while. I can't tell you how many times I have gone to sleep thinking I wouldn't wake up. but the pain and sickness just knocks you out, and thankfully I have always woke up. I do have a tendancy to worry about cancer, because of a blood test I have had, so it is important for me to feel like I am getting better so I won't worry about that. I would think I would be used to this by now, but sometime's it just really shakes me up. Thank you so much for sharing. It helps to know I am not the only one to feel like this. Helps me not to worry about all the "other" things! Jennifer, I am cracking up laughing (internally of course or I'd faint!) I have done almost just that before. I was filling out paperwork at the doctor, and I put my daughters birthday in where it should have been mine. And the worse part was when the nurse or whoever was going over it, and they repeated to me the information I had put, I nodded my head in agreement. Then she said so this makes you what 11 years old. And I again nodded my head yes.....until she started to giggle. Then I realised I had done something wrong, but she still had to explain it to me!! Red faced I made an excuse that I hadn't gotten any sleep the night before!! Thanks for sharing that! Suzy

Thank you so much Janie, I think I will write this down, because it is hard on me when it happens, and when I go to the doctors at Mayo where I don't have trouble at, I can tell them. I used to have it 24 hours a day, and that was when the only way I could be was with my head hanging over the edge of something. I tried to come in to my bedroom to lay down when it started, and my legs gave out before I got through the door. Everyones words were slurring together, and so were mine. Everyone kept asking if I was ok, and I just kept saying huh? I couldn't process the question. I don't know why I torture myself like this. Every little good moment I have I try to elongate and make last as long as I can. I guess I just want so much to be like myself again ! Don't we all. Thank you so much for your support. I can't tell you how much it means to me. Suzy

Hi Jennifer, Thank you so much! Was all your groceries bad?? I am feeling better. I do want to go get some gatorade. I think it scares me so much because when I was on medication I was like that day and night. I always fear that "it" will come back, for permanant again. I love that I can come on here, and feel "normal" to some degree. When I was bad all the time I couldn't remember my husbands name, or my birthday. I feel really relieved that it is passing. I guess I just panicked. Thank you so much for your support. Suzy

Thank you Jennifer, How long does is take you before you feel better. Glad to hear I'm not alone. I used to have this 24 hours a day, so when I get it now it is scarey, and I think oh No it is coming back. I get it in spurts now, but it usually goes away if I lay down for just a bit, and it seems more severe. Suzy

Hi all, I have been doing a lot of things lately as far as working. My HR watch broke, so I don't know what it has been at. I have been told, and heard so much that you have to get upright as much as you can, to improve things. I don't know if I just think it will help, or I am just angry about not being able to do things. I had to lay down, because all day I have had some strange stuff going onwith my head. It's different then brain fog. I used to have this severe all the time. I have really bad strange vision, and am like I am drunk bad. I slur my words, and can't think at all. Some of this is like the brain fog, but it is more pronounced. I can't think of my words, and can't remember anything. I don't know how to describe it. It is like I am just before I faint, but instead of fainting I just stay like this. I am unable to walk right now, I can't stand on my legs without them going everywhere. I feel a little better laying down, but when someone even talks to me I can't make out the words they are saying. It has taken me a long time to write this. I am looking at it, and have to keep thinking this is a computer you are typing to dinet. This is scarey, although I had this worse before I fear it will come back like this, and wonder if this is POTS, or something else neuro. I have the antibodies to the ganglia, and wonder if that is what causes this. I hope this makes sense, because I am just so confused, and desperate not to end up really bad again. Any thoughts? And please forgive me if this is confusing. I am confused. Suzy

I am so sorry for the loss of you and your family's dear friend. I am glad you had someone there who could help you. You gave her a good life, and filled it with love, and that is the best thing that you could have done for her. I have a 17 year old chihuahua, and know I am going to have to face this soon too. May you and your family have peace, and be able to share the wonderful memories of your special Tami. Hugs Suzy

I am glad you are going to look into this. While I thought I had this I was really upset and talked to a doctor about it, and he said it is really no big deal. More people have it, then don't. That made me feel better. But I will be praying that you don't. Good luck. Suzy

Yeah, I think that the accident sounds suspicious to me also. There is a lot that they can't see on CT's. Also they couldn't see (at least I don't think so) bruising of the intestines. Maybe there was bruising, that caused slow digestion, which could lead to something like that. (just my thinking. I am no doctor.) I don't know if I would try all that dairy though. The ways we torture ourselves just to find these things out ! It would be nice if the answers were just a little bit easier to come by! They showed me the CT of my esophogus, and it was round at the bottom where you could see that the food must have stretched it out because it didn't digest. looked like I had a second stomach. I am thinking this may be some of the source of my extreme chest pain. Glad your friend got some relief. I didn't even know they could do that. I really don't have anyone else to drive me. Even if I got a shuttle, I couldn't handle it, because I have to lay down in the car for most of the trip. If I don't I end up throwing up a lot, and that wouldn't go very well. Then I also would need to be able to bring my wheelchair which fit's in the back of our van. And I really need him around, because I faint, and don't want to be stuck in a hospital somewhere. He also helps me when I am real wobbley, and am in a sick spell. So even if I could I would still need him. It's funny, because I don't realise how much I depend on him. I will just hope that he is better real soon for now. He has slept 2 days away right now. I'm worried about him. Suzy

I have dysmotility, but that is all I can find out, because I can't do the EGD, (or have decided not to) because the problems with the meds, and stuff. After vomitting for 2 years, I was finally able to start getting food to stay down when I laid down. But it came at a price, because when I had a CT done they said that my esophogus is dialated. Which has me concerned as to how much it can handle. I have had problems with the constipation and diareah, and the most unusual thing is when I try to have a BM, I feel like I have no muscle control to move it. I truly believe my GI problems related to the meds I was on before, because after getting off of them I stopped vomitting. But then again I do still need to lay down to eat most of the time. GI problems are some of the worst to diagnose, because it is really hard to just "look" at everything. Did your doctor say weather or not the accident may have caused the rupture? Sorry I can't tell you any good advice to handle it. But I can tell you I do have similar problems. Also, I know you said you have been tested for EDS vascular (I think I am right on this?) have you been tested for any other EDS? Just a thought. Take care, and I hope you get this solved soon. Suzy

I second what Morgan said. Don't feel bad. Many people have this, they just don't talk about it. But I would also say get a second opinion. Did they do a lab test, a culture to diagnose this? When I was younger, I was told I had genital herpes also. The doctor looked at the sore I had , and said I am going to do a culture, but it doesn't matter what the results are that is herpes. Well years later I thought maybe the "herpes" I had was causing my problems, (before I was diagnosed with POTS.) So I went into a very mean doctor, and asked him about it. I showed him the sore (I hate male doctors for this sort of thing !), and he said "that is not herpes. That is just a clogged folicle like an ingrown hair. I can drain it for you if you want." He also took a culture just to "make me happy." The culture was negative. You can not imagine how I felt after so many years of thinking I had this, (even though the symptoms really didn't fit me) and then to find out that I don't. So be really sure this is what is going on, so you are not taking drugs that you don't need. And if it is not clearing up, then maybe you should be a little suspicious if that is what the problem is. I think that they are only supposed to last one to two weeks, but I really am not sure on this. Take care, and don't worry. We all have things in our closets. Suzy

Hi, I do this all the time. I think that I am worried that the doctors will say, (or think) that I am exaggerating my symptoms. Before diagnoses I had a doctor (or probably two or three tell me just that.) Or the big one, "it's in your head or mental". So I have learned to play down my physical symptoms. Also I think sometimes I do it because I just can't take much more as far as testing, and medication, and although I want answers to the question, if I choose to refuse the treatment then the doctor (sometimes) becomes angry, and will refuse to treat me. I am not going to have a EGD done this next week, because I just can't tollerate what happens to me on meds. I am expecting the doctor who ordered the test to get very angry with me, but I just can't do it. When I got my diagnoses I thought they were going to want to try a bunch of meds on me, so I told the doctor I think I am getting better in general. I also said I don't think I am really fainting. (pinochio) He looked at me kind of funny, and I don't think he really believed me. This was probably the first doctor that didn't accuse me of exaggerating! But instead tried very gently to tell me that I could, and very well may have this my whole life. The worse part is, is that I don't go back, and tell them what is going on, because all they can really offer me is meds. But I always walk away kicking myself too. Because I always have more questions, and wonder well is this caused by this? This is such a hard disease to deal with, and treat. It is hard for us to know what to tell our doctors. One day we will think there it goes I am getting better, (and doesn't it always happen on the day we are going to the doctor?!) and we really want, in our hearts to feel like we are getting better. Only for this ugly thing to come back and smack us down again. It helps me to journal or write things down as I go, so I can say yeah I am doing really good today, but just 3 days ago I was so bad that I couldn't stand up. And to take that journal with me just in case I draw a blank when I am in front of the doctor. (and I usually do!) Don't be too upset with yourself. Even if you had told the doctor he may not have listened. I think a lot of doctors (and I am not sayint this one. I don't know anything about him.) Have decided how you "feel" even before they walk in the room based on what they see, (or don't see) on your chart. You will get another chance. Suzy

Jana, in addition to outright fainting I also get what you describe with just suddenly falling. It feels awful. I just suddenly feel like I have no muscle control, like I am made of jell-o, and down I go. I read somewhere about this loss of posture, but as usual I have read so much I can't rember where I read it. Do you get a jell-o like feeling when that happens? Suzy

Hi EM, Sorry you've been having such a hard time, but so glad to hear that you had a good day. I have seen you mention meditation, and just wanted to mention a video on you tube I listen to that really helps me relax my muscles. It is in 4 parts, but almost every time I listen to it I fall asleep. Here is the link to part one, if you are interested. http://www.youtube.com/watch?v=i4aDZN8TXSk I just wish I could put them on a disk to listen to so I wouldn't have to go from one to another. I'm not that techy though....have a nice and symptom free day! (we can always hope.) Suzy

I'm so happy for you! Hoping for many more good ones for you too!! Oh....and from someone who recently had a good day, and overdid it, take it easy and enjoy it! Suzy

I do faint, but I also know that you don't have to faint to have POTS. It is syncope, or near syncope. If you "feel" faint when standing, then that is a symptom. Suzy

Thank you all so much for the support. I'm just in tears here, because no one else would really get this, but other potsies, and I am just so happy to have cyber friends like all of you. Jana, thanks so much for the hug, and understanding. I know the spoon story. I have been on that site. I love the story. just wish I could figure out that just because I don't feel bad for a day doesn't mean I have endless spoons ! Either figure it out, or accept it! Jan, I'm so sorry you are having a hard time with this too. It is so hard, and I have cried through so many things I have wanted to do. Like last summer my husband was taking my kids fishing, and I tried so hard to go. In fact they drove me all the way out to the lake, and I was only able to stay there for one hour, and they had to drive me all the way home. I was heart broken. I hope you can make it to the next thing that you want to. firewoman, Yes, my diagnoses (well one of them anyways) was OI. I hate the feeling like my insides are trying to fall out. It just feels so heavy, and awful. Nothing works on me when I feel this way. I can't eat, or drink even water. I used to feel like it around the clock, that was when I was almost completly bed bound. I'm not glad that you have felt that way, but I am relived that I am not alone. Thank you for sharing that with me. (Oh...I get mad too. I get mad at being sick...like that will help!!! Ha Ha!) Hugs, and thanks! Suzy

Hi Janie, Thank you so much. Yes we have already had a fire in it both nights, and cooked out both nights, so it is going to be a great source of enjoyment. Luckily I have some outdoor furniture that I can lay on, and that is where I enjoyed the fire from. That is exactly what I mean. I feel like my cells have nothing left to keep them going. It just gets so depressing not to be able to do the things I'd like to do. I have always been the type of person who enjoys projects like this. I guess that is what I forgot to do is give myself time to rest after I was done. Thanks for your support. Suzy

Hi Everyone, I had been having some pretty good days, since I got my wheelchair, and I started to feel like I was getting "better". So when I woke up yesterday, and felt great (for me), I took on a big outdoor project. I built a firepit in my backyard. There was a lot of work to it, and I did get real dizzy, and almost (only almost, yay!) fainted 3 times. But I would lay down, and rest, then would feel good again, and go again. Well everyone was thrilled with the outcome of the project, except my body. I just thought "that's ok...after a good nights sleep I will feel good again in the morning!" WRONG! So there was a fair that we had planned on going to see, and we went. I used my scooter, which helped a lot, but I just feel so awful. I had more plans for the day, but they have been cancelled, because I can't get up without my body feeling like the insides are going to drop out. Everything hurts 10 times what it normally does. My legs feel like I can't move them, for the muscle pain, and everything is moving under me. I have fallen down more times then I care to admit today. I feel like I need a forklift to get my body even to turn over. It is just so darn depressing. I don't mean to wine, I know everyone else here hurts too, but I sure would like to just be normal again. I was thinking I wasted the money on the wheelchair, because I felt better. Now I am thinking the reason I felt better was because of the wheelchair. Does anyone get this super heavy feeling especially of my insides like they weigh a lot, and are going to just rip out of me. One day I expect to stand up, and find my guts on the floor!!! Thanks for letting me vent this. Just feel so frusterated! Suzy

Maybe it is something here in AZ!! I was overweight until I first got sick, then I couldn't stop losing weight to the point they told me I had anorexia, due to the rapid loss. But I was getting very sick on medications. Then once I was able to keep food down, I not only gained I gained rapidly, and a lot. The last doctor I spoke to said that I was "eating myself to death". But the doctor who diagnosed me with pots seen my extreme weight changes, and I think related it to the dysmotility. (though I would think that if you can't digest as well that would make weight gain harder, but who knows. ) And I don't eat a lot more then before. In fact I feel very sick when I don't eat. So I feel stuck here with it, but at least it is better then vomiting all the time. When I tried to tell the doctor that told me I was "eating myself to death" that I fill up quickly he said that you can't fill up too quickly, otherwise you wouldn't have this problem. (even though I have proof of my slow digestion. ) I think that if you are thin it is easy to believe it is just a fast metabolism, but if you are overweight then it is because you just eat too much!!! UUUUGGGGHHHHH!!!! Sorry you are experiencing this! Suzy

Hi EM, I don't sweat at all in my arm pits, but under my breasts I sweat profusely! To the point I look like a nursing mother who hasn't been able to find her kid for 5 feedings! But I had the QSART test, and everything is normal there.....soooo don't really know what that means. Oh...and I get the lovely night sweats too, even if it's cold. What I understood from talking to my doctor was the night sweat thing is related to the ANS, but that if you don't sweat at all that is what they were looking for on me. Suzy