all4family

Hi Maxine, Sounds like some reassuring news anyways. I am saying a prayer already!!! Take care, and do something nice for yourself. I think we get so busy with taking care of being sick, that we forget to do nice things for ourselves. It sounds corney, but I treated myself to a smoothie, and sat under a shade tree in a park for about an hour the other day, and it was sure nice. Simple, but relaxing. Hugs, and lots of prayers coming your way! Suzy

Hi Thankful, Sorry about your back pain. I know how hard that is to deal with. (like you don't already have enough!) But I am so glad you wrote about this. I have pain all over, but the back and the chest are two of my worse places. And I have noticed that when I am "bad" POTS wise and more inactive that the pain becomes severe. I have found some stretching in my bed does seem to help with this a lot. I looked up some breathing exercises last night to try and "stretch" my chest muscles, in hopes that will help me breath better. How did you end up feeling POTS wise after the walk?? I am glad you got out and got to do that. Did the cooling vest help? I am 37. But gosh I feel 80 some days! I hope you are able to keep up with the walking if it helped you, but be careful not to overdo. (gosh I am good at giving advice I don't take myself.) There are a lot of yoga stretching videos on you tube, that stretch the back, that you can do right from your bed. But with your history of car accidents I would make sure it was ok first. Hugs Suzy

Oh my gosh! I am so happy you posted about this. I get them a LOT too. I just had them yesterday, and they hurt, and I kind of feel like I am suffocating with them. My husband said something to me about them the other day, because I was nearly fainting with each one! I know everyone gets hiccups, but I just wonder if maybe we get them more, or worse, due to the diaphragm maybe dysfunctioning! Don't know...but it's a thought. After you have them is the area of your diaphragm really sore? Suzy

http://www.migraineinformation.org/migrain...r-headaches.htm You might be interested in this then. I have been cussing the clouds, and keeping my sunglasses on even in the house lately. And I am wondering if this is why I vomitt. I was told there may be a relationship with my migraines, and my vomitting. sooooo...anyways. I hope this helps. Suzy

Hi, yes I do. And for some time after I eat too. When I am feeling like this I have a tendancy to have trouble swallowing, and choke a lot. I had a swallow test done, and wouldn't you know my swallower worked great! I have to lay down to eat. It helps with the breathless feeling, and is the only way I was able to eat, and not vomitt for the last 4 years. I don't know the reason for the breathlesness, but have heard that it happens because the blood pools in the stomach, and causes worse symptoms for some people when they eat. Suzy

My migraines started with some meds I took, after I got sick. They aren't as bad as when I was on the meds, but they are still a regular part of my life. I noticed the other day though, that I seem to get them with cloudy and overcast days real bad. We have had nothing but cloudy, and overcast days here, and sure enough I've had migraines. My vomitting may be related to my migraines. And I also get the aura, and other really nasty visual effects to go with it. I have even had complete loss of vision from them, and that was terrifiying. Do you notice weather your migraines are worse in certain weather conditions? I found a website on migraines that talk about weather migraines. And yes, for me usually before I faint I do get migraine feeling. But I don't feel that it is the migraine making me faint, but rather that the migraine is a warning that I may faint. Sorry you are feeling bad, and I hope your migraines ease up for you soon. Suzy

Hi Morgan, Thanks so much for the understanding, but so sorry you are in the same boat! It's funny becaus the last time I seen a doctor he said I was eating myself to death! Then when he asked about my appetite I was honest, and said some days fine, some days I can't eat. He said well your obviously eating somthing. The doctor before him had to mark on my extreme rapid weight loss. (this was the doctor that diagnosed me, and I had just lost 30 pounds in one week from seeing hime the first time.) I sometimes feel as women it doesn't matter what it is that we are sick with it will somehow be "our fault." I am glad I am not the only one who gets public vomitting. I don't feel exactly when it is going to happen, other then the chest pain, and it has a tendancy to come out of all holes with force! Sorry so graphic. And you know for some reason people just don't like you to lose it on their floors! I carry a cup, with a lid. When I am sick my whole family checks before they drink!!! ha ha! If whining is good for the soul my soul is VERY good!! Thank you for sharing, and I hope you are having a better day today. Suzy

Hi EM, Thanks for the laugh! You always have such a way with words! I think I will always remember one of you first posts to me with the doctor, and how you said to go in there with my clipboard! I haven't seen you around much, (then again I haven't been here as much.) I hope you are doing ok. Take care. Suzy

Hi Michelle, Thank you so much for your concern. I am feeling much better today (so far). When I vomitt it is not from nausea. It never gets past my esophogus. (which is probably why it is dialated!) I get horrible chest pain, and short of breath sometimes too. then it just starts coming up one mouthful at a time until it is all gone. (sorry probably way too much info!) It is an exhausting process. I have felt like there was too much stress, and that was what was causing this, but I didn't know what was stressing me. Last night though when I was talking to my mom I figured it out, and did something to change the problem. Afterwords I was able to eat, and I kept it down! I just ate, and so far so good, although I have a little chest pain. I don't have a primary care doctor. I just don't have much luck with those. Although I am working on it. I do have good support usually. I think if I can keep keeping things in me I will be doing better. Thanks so much for being there. I really have never met such caring compasionate people in my life as the ones I find on here. Like you! I hope you are doing well. Take care, and thank you again! Hugs Suzy

Hi Maxine, I am sorry for all that you have been through with this. Like you and Jennifer, I also have a lot of cancer in my family. My Grandpa died of prostate cancer. But they only gave him 8 months to live, and he went on and lived another 8 years. Then 6 months later my aunt died of breast cancer. After a couple more years my other aunt died of lung cancer (never smoked a day in her life.) My grandma had colon cancer, had surgery, and 2 rounds of chemo, and has been cancer free now for 20 years. Cancer is just an awful word, and no one wants to hear it. I don't blame you for how you are feeling. I hope you will take the receptionist up on the offer for the doctor to compare films now. Peace of mind is very important. And please let us know when you find out anything. Take care. Hugs Suzy

Hi, I don't know if it is just POTS or not, but I get this. In fact my first symptom ever(at least severe enough that I knew something was wrong.) was I woke up at 1am with numbness down half my body, and a very heavy heartbeat. Every night I am having this recently as I have been feeling real bad. My chest also feels real heavy with this, (often accompanied by the numbness) and the heavyness usually involves the whole trunk of my body. I will be interested to see how many other people get this. It used to wake me up terrified that I was dying, but now I think I have become so used to it I just sleep through it. It takes me about 10 to 30 minutes usually for it to pass in the morning. I hope this symptom will pass for you. Take care. Suzy

Hi Everyone, Sorry I haven't written earlier. Today was a really bad day for me. Your supportive replies got me through the day though. I wasn't able to hold my head up for very long today, but would go to the page, and read. Thank you so much. Erika, thank you so much for the prayers. That means a lot to me. I am sorry you are going through this too. It is so hard hoping that things will change, and waiting for the big "cure" that just doesn't seem to happen. I will be praying for you too. alicia, thank you for the understanding. I think when I first got sick I was conditioned to put myself down by doctors saying things to me like "you are taking up room of real patients that need help". It kind of conditioned me, to feel like I don't have a right to complain. I don't mean to sound stupid, but I have seen the initials DH a lot, and I know it means husband, (I think), but what exactly does it stand for? My mind goes to dumb husband!! ha ha!! Just kidding. Sorry he says that to you. He should be more supportive. Thank you for the support. I will come here. It feels so much better to talk to people who understand. Jana, Yes we do!! Comiserating with someone who understands sounds so good!! I really need to get my appointment reschduled, but I don't think I can make the trip right now. I am going to have to wait for this to pass. But as soon as I can we have to get together! Thank you for the prayers. I am praying for you and your boyfriend also. Janie, you are always so sweet. Thank you so much. Mayo was the one place that really seemed to understand for me. I do feel better about going there, but I truly wonder in my head what are they going to do? I have tried so many different medications, and that turns out bad. Unless it is something natural that I don't react to I don't know what to do. Maybe there is some magic help out there I haven't tried yet. Thank you so much for your support! Hugs and thanks to all of you. Please forgive me if any of this doesn't make sense. I have been very confused today. You are such a great bunch. You guys (girls) ARE the silver lining!! Suzy

((((((((Maxine))))))))) I'm so sorry, and I don't have any good advice, but I do want to say I understand. I really understand the fear of the unknown. You know just enough to worry, but not enough to diagnose yourself. I would say just the fact that you weren't called right away would give me some reassurance it is not serious or urgent. And the fact that the pulmonologist doesn't feel it is urgent would make me feel even better. I was told that if there were anything serious that the radiologist would call the doctor right away. That being said I know how hard it is not to worry. Maybe you could just make an appointment with another doctor just to find out. When I was really worried about lung cancer because of a blood test, I talked to one of those online doctors you pay to answer your question, because I had 3 months before I could go to a doctor due to insurance. It gave me a lot of relief, and made the waiting easier. I know how you feel that you can't think of anything else. I was a train wreck before I wrote that online doctor. I spent hours on the internet researching, and trying to find out. Try not to wear yourself down with it. It is not worth it at all. Just go see another doctor. Someone once said to me it doesn't matter what it is that is wrong with you, stress will make you feel worse, and make the condition worse. I know it doesn't make it easier for you right now, but those words helped me to keep things in focus a little. I hope I have helped a little, and I really hope this makes sense. I haven't been to with it lately. Please take care, and I will be praying for you, and those aren't just words. I really do sit down at night, and pray for everyone on here. BIG HUG! Suzy

Hi Jan, yes deffinatly too much to deal with! And with my house a disaster it doesn't look like it is getting better any time soon! I would so like to find a doctor who could help me without making matters worse. Everytime I try I end up so much sicker with the meds and the dyes. I would go to a natural path, but the worse thing is that I tried that already, and some homeopathic thing I took set my skin on fire and I had a rash that looked like a sunburn all over my chest and face. I also nearly coughed myself to death for over an hour. So even the natural stuff affects me, and with my history I am just so scared to try anything. I always go into these things saying ok. nothing is going to happen. You have taken this stuff before, but that doesn't help. The thing is I was willing to try anything, or I was. It would be a miracle to find a doc who could help. And a radical miracle if they were on my insurance! Jennifer, Thank you, thank you, thank you, for permission to whine! I really need it! I think a pitty POTS party is just in order!!! I can't tell you how many times I sit in front of this computer, and cry tears of sadness, anger, happiness, but the best ones of all are the ones of relief that you cry just knowing someone else understands, and is there for you! Those are the ones I am crying now! Thanks a million for your support! Hugs and thanks Suzy

I understand how you are feeling. It is like you need the help, and even want the help sometimes, but you want your independance too. Your well meaning family is wanting to help you, and keep you safe, but you need that indepenance to help you feel like a person. Do you have a cell phone you could take with you when you go places, so they could call and check on you, or they could be reassured that if you need help you would be able to call? If not maybe if you could leave them a note letting them know you are ok, and have just gone for a walk, and give an approximate time you will be back. I found when I relied on myself more I managed my symptoms more. I think because I felt in control. It is a very hard thing to lose control. Especially for a young active mother. And sometimes that smothered feeling you are getting makes you forget who you are. I don't have any really great advice, but I do hope you can work this out in a way that is safe for you, and gives you the control, and life you are wanting. I hope things get better real soon. Oh and just an afterthought. Maybe you could get a doctor to explain to your family that it is ok for you to take these walks on your own. Maybe that would ease there fears. Good luck. Suzy

Thank you so much Babette. You are right I haven't been thinking of the things that help me. instead I have been punishing myself for not being able to do things. One of my big helpers is not to get emotional. And I mean all emotions weather happy, or sad, or angry, or scared. I kind of have to stay blunt to everything. I do feel, but can't do it on large scales. The other thing is obviously laying down. I guess I just figure I was doing better "maybe I reconditioned myself, you know like doctors say, and I just need to keep going!" HA! I definatly feel like this is "too much"! Thank you for your thoughts and prayers. They mean so much to me. Suzy

I have episodes like this. Mine end in a sleep that is almost a coma. I have fallen asleep in plate of food, and when I do fall asleep like this you can't wake me up. It is very strange. But it passes in a couple of days usually. I have a very hard time with my health when I miss even just a little sleep. I hope this passes for you soon. Take care. Suzy

Hi Everyone, Well I have still been trying to hold on to the thought that this was just a small set back for me, and I was still getting better. Yesterday I started in with not being able to eat again, even when lying down. Now I am vomitting again. I can't stand without feeling like I am on a boat. And unfortunatly I feel like that when I am laying too. My neighbor noticed I was loosing weight, and "complimented" me which I need to lose it, and if I were even trying to it would have been a compliment, but it was just a reminder that I have no control of anything with my own body. This is how it began for me with my other 2 really bad crashes that left me completly useless. I am really scared, and depressed about this. I am afraid of going back to doctors who don't believe me, and only can offer me things that in the end make me feel sicker. I feel like there is no help for me. I really don't want to live the rest of my life like this. I am sorry for feeling sorry for myself. I am trying so hard to just be OK with this, but I am not. I am tense everywhere and really don't know if I should blame the disease or just being so dang scared of going through this again. I don't know where to turn, except to you guys that understand. Even typing this is leaving me so confused. I really am sorry I feel like such a complainer. That is not my personality. I really wish I could just have some hope right now. Thank you all for listening, and allowing me this outlet. Suzy

Hi Flop, I am pretty sure they are not insect bites. I have had them before, in places that insects don't reach well. That is interesting what you say about shingles, and the pattern they follow. When I went to take my shower last night I noticed I also have one under my breast. This one is just the line, but isn't blistering or oozing yet. (knock on wood.) The ones on my back are almost completly gone now, except for a scab. So it does come and go pretty quick. But it is very strange. Thank you for your concern, and help. I really appreciate it. Take care. Suzy

Hi Jana, I am so sorry for the bad time that you are having. Sorry about the news of your boyfriend. I think that we carry a lot of guilt about being sick all the time. And then when someone else is sick we feel we have to do the same that has been done for us. But what I think is more important is being there for someone how we can be. Sometimes that just means listening to them tell us how they feel and understanding. (we all know how important that can be.) And I think that the rest just has a way of falling into place. I think if anything that you will be a MORE supportive person BECAUSE of what you have been through. I have seen how you help many people on here, and know your boyfriend must feel just as much support at home. AND not only that but just think about how you can help him with doctors visits, and doctors, and going through the medical system. It is hard enough being sick without having to try and figure out what to do on your own. You have so much experience with this already I know you will be a big help to him. Also just as a side note. My grandpa had, and died from prostate cancer. This was about 18 or so years ago. When he was first diagnosed they said he had maybe 8 months to live. Well he went on and lived for 8 years. And I know a couple of people who have beat it, and are still going strong. I am sorry for this terrible diagnoses for your boyfriend, but just want you to know that things are improving with beating cancer everyday. You and your boyfriend will be in my thoughts, and prayers. Please take care. And know that you have something to give him that most people don't have. Understanding about being sick. Hugs, Suzy

Ok! I am totally laughing! Jan I just gave you advice about seeing a doctor on your post, now I am sitting here trying to get out of it on mine!!! The red line is completly gone. It was kind of on the surface of the skin. Like if you got a bad rug burn, that blistered. It isn't down inside the skin. Otherwise I would really agree, and be down at my ER getting a lecture about how many times I had been there or something. I just don't want to make anyone worry. It is like a skin thing. Not an under skin thing. Does this make sense? Anyways thanks for always thinking of me. I am always thinking of you too. Take care. AZgirl, I do need to go back to Mayo. At first I cancelled because my husband was sick, then hurt his back, then one kid got sick, then the other. Now there is still some lingering cough. Then My father in law went to hospital for emergency surgery on his stomache, and the next day my uncle got chlorine inhalation (he works with water treatment large vats of chlorine) and was in ICU for 4 or 5 days. All this while I was doing good at least! And I was trying to do my kitchen, and we were helping the neighbors with some things of theres. (Gosh and I wonder why I am tired!) So in a nutshell that is why I haven't rescheduled. Things have just been crazy. That and I really had it somewhere in my head that I was all better, and I didn't need to see any more doctors! HA! That is so nice of you to offer to do that. I will send you an e-mail tonight after I am laid down for a while and can think clearly. OK? Thank you so mucch. Take care! Hugs Suzy

Hi Jan, So sorry that you are having a hard time. I do get that also, and it is really difficult to deal with. I usually get it with numbness right before I faint. I agree with Janie that maybe you should have this symptom checked out. Especially because it is new. I know for me I have a tendancy to blame it all on POTS, and put it in that big ol' pot, (pun intended!) but it might be better just to have a doc say everything else is a-ok! And that comes from me the doctor phobe!!! Ha Ha! I hope you get to feeling better real soon, and let us know how it goes. Even when I am not able to post I jump on and off, and just check on the people on here. So please let me know what you find out if you do. Take care. Hugs Suzy

Hi Shoe, Welcome, although I am sorry for what you've been through that brought you here. Gosh I thought you were writing my story. Just kidding. But seriously All the trouble with doctors, and when you said your oxygen was low, and they sent you to the ER. That has happened to me many times. I am so glad that you found a physician that knew something about autonomic problems. I sure hope you get answers soon. I have problems with bladder also, but mine come in the form of don't know I have to go, then cough or sneeze, then I find out....oops I had to go. I know on this site you will find many people who share many of the same problems. By the way did they figure out why your oxygen was so low? Mine has ran as low as 90, but I know that isn't a good oxygen. I really get your brain fog issues. You can probably tell by how confused this post is I am suffering from it now! Anyways I just wanted to say welcome. Suzy

ewwww!!!! I looked up the pilonidal cyst, and it isn't that deep! It is more on the surface. Kind of like something hot burned me, and made a blister, and it oozed!! I am going to have my hubby take a better picture this morning. Thank you girls again! Suzy

Hi Everyone, and as always thanks so much for your thoughtful replies. This morning the red line was gone. The blisters aren't oozing anymore. They have now become a scab, which is what the ones I had before did. Pat57, my grandma has shingles, so I will have to look into that. Thank you. Julie, that is kind of what they are like, is a hive that breaks and oozes the liquid out. But I never felt a hive reaction with the itching and stuff. I'll look into the pilonidal cyst you mentioned. Thank you so much for your help. Jana, thank you for your concern. I did have the appointment at Mayo as you know, but I had to go through my family being sick one at a time, so now would be a good time to reschedule that appointment. Maxine, unfortunatly I haven't had much luck with my local doctors, and although I have tried I still don't have a regular local doctor. But luckily the red line is gone. If it gets any worse though I can go to urgent care, and I will. Thank you for your concern. I think the fact that it was on my spine with the red line was what had me so concerned too. Because I have had these before, just not on my spine, and not with the red line. Thank you for your help. also Julie, the reason I was wondering about the mastocytosis is that these look like pictures you sent me once for skin sores or lesions for mastocytosis. When they scab they look just like them. But I don't know if that is just a coincidence. Thank you all so much for your help with this. If I learn anything about it I will let you all know. You guys (girls) are gems! Suzy