all4family

Hi everyone, I noticed some liquid right on my spine tonight, and remembered the last time this happened I had blisters that oozed. And sure enough there was a large piece of skin that was peeling off as if I had been burned, where the liquid was coming from. It also hurts like a burn. I also have a line going all the way up my spine that looks like a burn. (my husband looked at it for me.) I did have bruising around my spine once and don't know why. Does anybody get this? Could these be the blisters like with mastocytosis, or mcad? I did have a partially positive test for this, but have been unable to come back and repeat the test due to my family being sick. It hurts to the touch, but other then that it is not particularly painful. Just concerning. Any help would be appreciated. Suzy

I have, and it hurts. But I really don't know why. It is usually my left also. Most stuff happens to me on the left. I hope it gets better soon. Suzy

Hi llynchurch, Sorry to hear that you are experiencing this. I think that breathlessness is one of the most frightening symptoms for me. It seems so hard at times for me to believe that this is coming from something that is not life threatening. Especially when it gets real bad. I have had some blood work done that points to lung (and other) cancers. But I have also had multiple chest x-rays, and 2 chest ct's. When I did my valsalva manuver for my testing I only was able to get the meter to half of where I was supposed to get it. I have had 2 pulmonary function tests. Both of which showed a problem, but it was thought to be from my weight. (I am overweight now, but I was considered anorexic before and still had the same problem). I have also talked to many people on the boards with breathing troubles. So even though I have had lots of tests to show breathing difficulty, there has been nothing to say why. So because of that unless someone finds something else I have come to accept it as a POTS symptom. I sure do understand where you are coming from though. It sure would be nice if we could get more deffinative answers, and some better solutions for this. I hope you are breathing better soon. Suzy

Gosh I am so happy you posted this. I have been so down recently, and this gets me to thinking of positive things. I can say that for me the positive things that have come out of it are, My relationship with my husband grew a lot. He had to learn to be there for me more, and I had to learn to trust him to be there. My kids learned to be more compasionate people, and also learned more independence. I learned a lot about compasion. I used to think I was a very understanding and compasionate person. But I lacked the insight into how it feels to be sick. Now when someone is telling me about how they feel I am more understanding. I also became a much stronger person. Through some terrible events that happened to me and my family when I was sick, and I was unable to gain help, I learned to count on myself. I learned that not everyone can be trusted, and you have to be able to stand on your own weather sick or not. I learned to protect my family, and myself from people that claimed to want to help me. I learned that it's the little things count in life. Like a child's kisses, or a caring friend willing to spend hours with you through a rough time. Like a loving family that helps you. Or a special group like this who understands what it feels like, and jumps in with their stories and encouragement when you need it. Gosh there are many more things flying through my head, but that is a good start. Thank you for helping me think of the positives! Suzy

Thank you for sharing that good news. I am so happy for you. Enjoy your roller derby that is great! Suzy

Sorry it has taken me so long to respond. I have been struggling a lot lately. Ramakentesh, yeah, I relate to what you are saying. It seems like I go through periods of real bad with few good moments all the way to periods of real good with few bad moments. I just wish I had more of the good with few bad moments. Thank you for sharing. Maxine, Thank you so much for the support and understanding. I really like your ideas for the movie thing. We have a membership to netflix, and love to watch movies. I am always trying to think of fun things to do with the movies, and really like your idea of the movie trivia and stuff. Luckily my whole family enjoys the same kinds of movies, which really helps. We will probably have a movie night tonight. Thanks for the inspiration. Thanks for caring. I hope you have some real good days soon too. Take care. Hugs Suzy

I have a history of glomernymphritis (really don't know how to spell that.) in my family, and therefore have to be careful of my kidneys. I have had a lot of trouble with my kidney and liver function tests coming back abnormal. But my creatine is always low. But my billytot and billyubin have been very high. I also had very brown urine. I don't know which of these were related to my kidneys, but my doctors were worried about both my kidneys and liver at one point. All of these tests improved and returned to normal once I got off of the medication that was making me sick. Is there any you are on that might be effecting your kidneys? Just a thought. I hope this helps. Suzy

I understand where you are coming from. Some days I would just like to wear a sign that says "I'm sick!" I have had the same thing happen to me as what thankful describes in the store. But what others say is so true. It really doesn't matter what others think. It matters more what you need to do to get along in your life. I have dealt with a lot of critisizm, but found that when it quit mattering to me what others thought I felt a lot better, and was able to enjoy my life a lot more. You deserve a life too. Suzy

Congratulations! And thank you for sharing what you did. That was very smart of you to send in that page a day in my life. It is so hard to sum up how dibilitating this is by just answering questions. I was actually sent a letter in the mail saying I qualify for disability, but when I called the office to try and set it up they said my husband makes to much money. That was frusterating. I am so happy you can just relax about this. No need to spend your energy on money concerns. One more smile for you! Hugs Suzy

I'm sorry this happened to you. Don't feel bad about not saying anything. I had something similar happen when I was 17 years old. I went in for a sore throat, and the doctor gave me a pap smear which he sent the nurse out of the room for. He then proceeded to exam my breasts forever, which now that I am older I know he wasn't just examining. I felt bad about it for a while. And the worse part is, is that I never said anything, so I wonder if he is still out there doing this. It's a good thing you said something. Sometimes all it takes is one person to speak out, and we find many others who were afraid to. But you might want to think about what Nina said about deleting the post. Hugs Suzy

Thank you all for the support,encouragement, and for sharing your stories with me. You all made my day so much better today. While still well, and thinking I could make plans and do things somewhat like normal people I had made plans to go to some kind of animal type festival down at our local fair ground. Well I couldn't let my kids down, so I got up this morning and go ready to go. Before I left I jumped on the computer and read all your encouraging, and supportive messages. It made my day so much better just knowing I am not alone in this and there are such good people like you all on here. I made it through on my scooter, and came home happy, and feeling pretty good. Jan, Thank you for the hugs, and sharing. It sure is nice to know we are not in this alone. Michelle, You did give me so much support. I was in tears with your encouraging message. And I think I just needed permission to as you said mourn what I have lost. I had planned on having my kitchen and living room done, and enjoying the summer with my kids. After allowing myself to feel sad about it I felt relieved. I was able to take on today one moment at a time. Thank you. Vemee, I will look for the book you mentioned. I think a big part of the battle with something chronic is the emotional side of how it effects you every day. Also thank you for the concern with the breathing. I did go into a bit of a panic with the breathing issues, and worried about a blood clot. But they were just the same as I had before, and the other really puzzling thing is that neither of my legs are swelled at all anymore. Which I find very strange. That is one symptom I never get. The only time I had it was when I was feeling good. Then almost like clockwork I began feeling sick again, and there go my legs feeling better. Unless it is because I finally got off my feet. But I am keeping an eye on it, and will not ignore it if they swell up again. Oh, and the blue color was temporary,and went away after a while. Jana, I am so sorry you are going through a down right now. I hope you have a up real soon. (especially one that stays up.) I do think that knowing you are not alone is what makes this bearable. Today I thought you are not the only one going through this, and it helped keep me going. Thank you for telling me others get better. I just want so much to believe that I will be better one day. It makes today easier to take if I feel there is hope. Thank you. Janie, you described it perfect coming out of a fog, then the reality of the limitations setting in again. The kitchen is depressing, and stressful at the same time. I am hoping I will have enough energy to finish it. Even if at a slower pace. I at least have to get it far enough done to get our oven back in. I am tired of microwaving everything! The shortness of breath, and chest pain are troublesome, but I find that when I am more used to it it isn't as scarey for me. Thank you for the support. I am resting, and even took a nap today when I got home. Babette, Thank you for the support. I am a type of person who likes to plan things, and I can't do that with the as you said unpredictability of this disease. It really can be very frusterating. I hope you don't end up in bed again. I know how hard that is. I spent much of about 2 to 3 years laying on the bed or floor. It wasn't constant, but it was the only time I had even a semblance of a life. One day ran into another for me. I couldn't stand it. I should just be grateful that I am not back there again. Compared to those days my sick days now ARE sunshine days. So thank you for helping me see the positive. And thank you so much for the thoughts and prayers. They mean so much to me. You all are really some very special people. You have all walked such a hard road, that you have a great deal of compasion, and it shows so much. From suffering we learn compassion. I am sorry for everyones suffering, but must say what wonderful, caring and compasionate people everyone here is. Thank you all truly, and hugs to all of you, Suzy

I'm sorry you are feeling so bad. Have you tried drinking some water, and going in a dark room without noise? That helps me a lot. Sometimes just a short nap will help to. I hope you feel better soon. Suzy

Hi hopefulcase2, I am so sorry to hear you are going through this. I know how you feel. It is so hard not to worry yourself silly when you feel so bad. Every missed heartbead brings the question to mind what is wrong with me. It seems so hard to believe that you can feel this bad, and survive sometimes I think. I do get the missed beats, and then I will get a real quick thing with my heart just taking off, then it goes back to normal. Don't feel silly. I did some of the craziest things when I was first sick. Just trying to reassure myself I was ok. I even got really good at putting my hands on my neck and just look like I was sitting like that so no one would notice. Have you had your heart checked out real good? I have a couple leaky valves. I wish I had some good advice on how to relax through it. I had some people try and teach me how to "breath" through it, and that only made me to concious of my breathing I hope things get easier for you real soon. Suzy

Hi Everyone, I was really hoping for my feeling good to last. I even tried denying the signs that this was coming back, but today I tried all day just to get up and do anything, and I couldn't stand straight, I couldn't breath, and my chest hurt. I had the spacey feeling, and vision was really bad. Well you all know how it goes. I could list the symptoms for hours. I want to just sit and cry for hours, but that just makes me feel worse. I don't know how to pull out of this. I'm sorry I'm on my pitty potty. I should just be happy that I had some time feeling good. I want to be positive, but I am just not feeling positive at all. I feel like a little kid who just lost their favorite safety toy. Why do we have to be sick?! Has anyone ever gotten better...for good??? Has anyone ever heard of a story of someone that just got better? If you have "better" times does that mean that you may get better? Or is getting better just an elusion? Can anyone give me any hope right now? Thank you all for always understanding. Although I'm real sorry we have to understand this. Suzy

Hi Vemee, mmmmm....garlic bread with spaghetti too...I know what we are having for dinner tonight! I think that is the hard part for me, because chest pain and difficulty breathing are my "norm"! And last night while working while sitting on the floor, my right leg looked blue from the knee down. But this morning both my legs feel fine. I know that I have had several of the D-dimers I had taken when I was first sick come back slightly high. Just like 58 out of 50 being the highest. Which is how I first learned about blood clots. But I attribute that to being dehydrated, because I was vomitting a lot then. But that is why I was worried when that happened with my leg. I don't know if I have been checked for factor 5 or not. There were a lot of specialty tests done at Mayo, but I haven't heard of that one. I know something like my clotting times were checked. I think something like thrombosis time. (I don't know if that is right.) Thanks for the help in figuring this one out. I am definatly watching for fever though that is one symptom I don't normally get. Hi Rachel, Thanks for that information. It is comforting to know that a doctor said no increased risk for people with POTS. And I certainly have been doing my fair share of moving around. In fact the more I move around the more my legs swell. Anyways thank you. Thanks a ton, Suzy

Thank you all for the help. I am happy to say I am not as concerned as I was yesterday. I didn't get a real bad charlie horse in my right leg again last night, although it still hurts a bit it isn't as bad. But I did get one in the left leg, and I am pretty sure a blood clot wouldn't travel from leg to leg. So I am going to guess it is just overworking muscles that have been underused. Hi Ramakentesh, that is interesting about the gallbladder. I have had mine checked probably 4 times since I first became sick. Luckily it is ok. Thank you. Hi Futurehope, I can't tell either. I know I have had charlie horses before, but this was accompanied by the swelling making me worry. But this morning the swelling is down, (knock on wood it will stay that way), and like I said above I was really reassured when I got the pain in the other leg. But I am going to keep a close eye on it. Sorry you get clots when you travel. That would make me nervous about traveling. In my research on this subject last night I found out that garlic is a natural blood thinner. (Ate a whole head last night). I eat it sometimes for other things also, so I am going to be eating quite a bit for now. Thank you. Hi Vemee, wow! what an ordeal you've been through. That must have been very frightening. Nothing is ever wrong with me either. It would be nice if a doctor would just listen, and go ahead and assume you are telling the truth, instead of assuming you are just looking for attention, or whatever that doctor happens to think. I have had to "prove" to doctors time and time again that I know what I am experiencing. But every new one just goes right to the "in her head" diagnoses. UURRGGGGHHH! Sorry. You said that it moved from your foot to your calf. Do you know if it can go from one leg to the other? I wouldn't think that was possible, but I just don't really know. Anyways, thanks so much for your help. That is good to know about the fever, and I will be looking out for that. Thank you, Suzy

Hi Radha, Thank you for the support. It sure does mean a lot to me. I am feeling a bit better, except for some concerns about a blood clot! If it's not one thing it's another! But thank you very much for the support. It means a lot to me. I hope you don't ever have to faint. But it has gotten less scarey for me as I have learned more about it. Take care. Suzy

Hi everyone, I was just wondering if anyone knows if the blood pooling we get in the legs increases our risk of blood clots. My right leg has been swelling more then my left leg, and at 4 am this morning I woke with a charlie horse on the back of my left calf. Although not as severe of pain as last night it has been hurting all day. I have been very active recently, and spent a lot of time on a ladder, so I am hoping it is just sore muscles, from not being used to all the work I have been doing. I don't want to panic, but must admit I am. Any help would be appreciated.. Thanks Suzy

Hi Michelle, thanks so much for your support. I lost grip of my cliff tonight when I fainted for the first time since I started feeling better. I was really sad. I am so sorry to hear that your in the same boat, but glad that we can at least be there for each other through these times, helping to keep each other afloat. I often wonder what I did wrong to have this happen to me. But I am sure we all feel that way sometimes. I still haven't given up though. (I can't my kitchen is in 100 pieces!!!) Thanks you so much for caring. Mack's Mom, Thanks so much for the hugs, they are so needed!! hugs back!!!! by the way has anybody ever found out after they fainted that there shirt came up exposing everything???!!!!( totally red faced!) Hugs Suzy

Hi Michelle, thanks so much for your support. I lost grip of my cliff tonight when I fainted for the first time since I started feeling better. I was really sad. I am so sorry to hear that your in the same boat, but glad that we can at least be there for each other through these times, helping to keep each other afloat. I often wonder what I did wrong to have this happen to me. But I am sure we all feel that way sometimes. I still haven't given up though. (I can't my kitchen is in 100 pieces!!!) Thanks you so much for caring. Mack's Mom, Thanks so much for the hugs, they are so needed!! hugs back!!!! by the way has anybody ever found out after they fainted that there shirt came up exposing everything???!!!!( totally red faced!) Hugs Suzy

Hi Jana, Thanks so much for the encouragement. I do have the "entertain" everyone personality. It doesn't help that my husband likes to be a jokester, and gets hurt feelings when I don't respond. I am not trying to ignore him, I just get to where I can't respond. I'm sorry you experience that too with everyone wanting you to talk when you don't feel like it. I think people think I am mad at them, and that can't be farther from the truth. I am going to read my e-mail now....I have hardly even been on the computer since I was doing so good....guess I just didn't want to waste the good time sitting or laying!! Thanks for the support always, Suzy

Hi Janie, I am so sorry your appointment didn't go better. I wish there was a really good way we could let people know how hard this thing is. I just had an experience tonight where we went to costco with a kid who is spening the night with my kids, and we didn't have much time, so I skipped the cart. Well by the end of the store I was pretty bad, but I made it. Then we had to stop at lowe's for some stuff, and on the way in my kids friend said "Please get the cart, I don't want to see you faint again." I had forgotten he had seen me faint. It just goes to show that unless you spend time with someone with this illness you can't truly appreciate how unpredictable and debilitating it is. People (like your doctor) might see you at a good moment and think well your doing well enough to do something. But that doesn't say how you will feel later. And after dealing with this for a long time I think we just become good at not showing how we feel so much. I've been pretty good for a few weeks, and I could have easily held down a job. As long as I could lay down when I needed, could work at my own pace, and when I became confused, taken a nap, so I could go on with the day. (and this was when I felt GOOD!) Even feeling good I have to really work around being sick to accomplish anything. I do think it is a good idea to take someone to the doctor's with you, who see's your struggles. Take care, Suzy

Thank you,Thank you, Thank you, for the support. Jan thanks for always looking for me, it feels good to come where people can understand where I am coming from. (though I wish none of us understood this.) Did you ever have one leg swell bigger then the other one? that is what is happening on mine tonight, and my neighbor told me that means heart trouble. I just love worrying. Hi Janie, Thank you so much for always posting such supportive posts. I am glad you understand the talking thing. That is one of the worse symptoms for me. because I just feel like I am suffocating. Then I have to kind of yell, or I have no voice, and the yelling will just about cause me to faint every time. I will go read your post after I am done typing here. I feel the same exact way about coming on here. It is so nice to be able to talk without feeling bad. Every day I felt good I was sooooo busy because I really missed feeling good. But I never stopped thinking about everyone on this site. I would find myself saying oh I wonder how such and such is doing. So I found myself telling everyone I talked to about the people on here. I know what you mean about the unpreictable. When I am used to feeling this way everyday then it is not so hard on me because I am used to it. Now I am going through worrying, and the very deep fear that this thing isn't really going to go away. I was getting real hopeful that this was it for me, and I was one of the lucky ones....still not going to give up...maybe just a speed bump!! take care, Suzy

Hi everyone, Sorry I haven't been around lately...I posted a little bit back that things were going really good, and I had been doing a lot. I'm remodeling our kitchen and laundry room! Well for the last 3 days I have been going back down hill. My chest hurts really bad, and I can't talk without feeling bad, which everyone is getting used to the not so sick me again, and wants me talking. The funny thing here is when I started feeling "good" my feet and legs were swollen something awful, and would go down at night, but swell right back up in the morning. well they are still swollen, but not very bad anymore. I never had my feet swell when I was feeling sick. Weird me. I am just really depressed right now, because the simple act of talking makes me feel like I can't breath, and am going to pass out. The disapointment is just a lot to take. But I am trying to be happy, and hope that this is just a short spell, and will pass. I hate this....But at least I had some time feeling good. Maybe tomorrow will be another good day.....I hope you all are doing good, and I am hoping for everyone to have some really good days ahead. Take care. Hugs Suzy

Hi Julie, Sorry to hear your son is not doing so good. This may sound strange, but everyone in my house has been sick, and we have all had nosebleeds for no reason. Also my neighbors kids have, and a couple of other people we talk to. Yesterday I bent over, and I thought I had a runny nose, but blood dripped on the floor. Certainly not as severe as what you are describing with your son, but I can't help but think that maybe there is something causing this high number of nose bleeds around here, and maybe it is related to what is going around. What does your sons doctors say about this? We also have history of anurism in our family, and my son had to have his nose cauterised twice. I hope your son gets feeling better soon, and you find some answers to this. Suzy