all4family

Hi, what is your daughters calcium level? I have low vitamin D, and high parathyroid hormone. At first I was told I have a tumor on my parathyroid gland, but they said I have seconary hyperparthyroidism because my D is too low my parathyroid is over producing. My calcium was normal.. if my calcium was high then that may have meant I had a tumor on my parathyroid, which is easy to remove. But my treatment is supposed to be very high vitamin D. And believe it or not this causes a lot of probems. Sorry but I don't know anything on the blood sugar, but wanted to tell you about the parathyroid. Suzy

Janie, Sorry about your license. My sister is a nurse, and I took care of her baby while she finished nursing school, so I know how hard it is. I would be watching her son to late hours of the night, while she studied, then he went to day care at 6 am. But it sounds like you have a good handle on it, and that is really good that you can get it back. I know what you mean about feeling guilty about not being productive. I am just curious is SSDI the same as disability? Because I got a letter a long while back (when they thought I was just nuts) that I qualified for disability, but when I called and talked to someone they took all my information, and told me that my husband makes too much money. Good luck with the SSDI. Take care, Suzy

Hi Everyone, Thank you all so much for your wonderful ideas, encouragement, and support. I know there is a lot to be said about emotions, and our health, and it must be true. I read all the encouraging things everyone here does, and what I got was that I feel guilty when I can't do anything. So yesterday I gave myself "permision" to be sick. My kids gave me massages, and we had a movie marathon day. I found a comfortable position that I was able to watch the movies in, and you know what is funny? I was EXHAUSTED!! But I just was fighting that feeling instead of taking care of myself. I was critisizing myself for what I couldn't do, instead of caring for myself the way I needed to. I was feeling guilty, and stressed about the unfinished kitchen, and the messy (very messy at this point!) house. I was mimicking, and repeating what I have heard from doctors about it's all in your head, or if you would just get yourself busy you wouldn't have time to think about it. You all gave me the "permission" I wasn't giving myself to go ahead and just be sick. And you know what? I got up this morning, and was able to pick up some stuff in the kitchen. Walked around for about 15 minutes just doing some things, and then I got dizzy, so I went back and laid down. But I got up to begin with, so that gives me hope. Oh and EM, I told my husband that you do the same thing, and what your husband always says, and he was really happy, because now he knows what to say to me!!! Thank you all so much, for helping me find ways to get myself back up. If I didn't have this group I would still feel sick, and on top of it would still be beating myself up. At least now I just feel sick!! Take care everyone! Hugs and Many many thanks Suzy

You guys are a great bunch! It sure does help me when I know I am not alone with this. I am reading and taking in what everyone says. It feels like my lifeline right now ! I am hoping to pull out of this soon. I think I have asked my husband a hundred times if he thinks I will get better. I can't even stand for more then a minute right now. I will reply more later when I've got a little more energy and when I am making more sense. Thank you all so much again. Hugs and thank you's Suzy

Hi Rene ((((((((Hugs)))))))) so sorry for what you are going through. It sounds like you got more then your fair share of junk for the day. I wish I had some smart words to help you. That sounds very hurtful being left out of something for your daughter. My Ddimers are almost always elevated too. And I am always short of breath...yet clear ct. Are they elevated a lot? I have kind of come to the conclusion on mine anyways that maybe my body is just always dehydrated, so my blood is thicker. I hope your day turns around for you. (stay away from airplains though alright! ) You will be in my thoughts and prayers. Take care, and be easy on yourself today. Maybe do something that feels like a treat for you. Suzy

Pretty much the title says it all. I won't go into how rough things have been for me, I've had that pitty party here before. But I was just wondering what everyone here does to get by each moment when they are down sick, and that is bringing them down emotionally. What helps all of you feel better.....even if for only a little bit. Thank you all in advance. Suzy

Hi Jennifer, Than you so much....It means so much to me. Hugs Suzy

awwwwwww Maxine, thank you...I know how it feels not to be able to post. As much as I want to sometimes I can't. I did come here for the last few days a couple of times, but nothing was making any sense to me. Thank you so much for your support. I will have to look up ceftin, maybe I could try that. I just hate being so darn sensitive. Hugs back at you Suzy

Hi Maxine, Now I really feel stupid. When they did the MRI of my head it said I have fluid in my mastoid air cell....I told you my brain was on vacation. Well I hope this all works out ok for you. I'm keeping you in my prayers. Suzy

Hi Jana, No one with pots and cardiomyopathy is a wuss! But I get where you are coming from with the dentist. I don't have a fear of the dentist, or the pain, mine is of the drugs or infection!! I know I can't get trough them extracting a tooth without any pain killer, so I already have to go there. Then if I take antibiotics I am just scared I will end up this bad for a long time. I will say a prayer for you that you will come through with flying colors next wednesday. Freaked out with ya!! Take care, I will be thinking of you. Hi Jan, Yes every time I take even one dose of meds my liver enzymesgo up. I can't tell you how many times I have been checked for hepatitis. A,B,andC. It takes them a while to go back to the normal range. And when I had a MRI of my head because there was something behind my eye they were already up then too. After that I just thought I would die. Then I read some stuff on that, and I have the symptoms of some neuro disease related to gadolinium, the dye they used. I am wondering if that is what is causing the blisters on my back. I would do a liver detox, but really don't think my body would get through it right now. And besides I don't know a doctor who would do it. We don't realize how much that big organ in the center of our body does, but it is important, and I can tell you that just from that one pediatric dose of tylenol I was SICK! The worse part was it gave me a headache!! It's supposed to get rid of those!! ha ha! oh well! Thanks for the support. Hi Angela, sorry about your tooth pain! I really hope you don't get an infection. That's why I am just having mine pulled. I feel for you. My tooth pain is better now, just the sickness left. Those are the 2 drugs that I can't take also. But like I said I turn numb, and strange feeling everywhere, then other stuff starts to happen, so I don't really know if it is an "allergic" reaction or not, but I don't want to take a chance. What do you usually end up taking instead??Thank you for the support, and I really hope that you get feeling better soon. Thanks girls, as always you are all jewels!! Hugs Suzy

Hi alicia, You are so right. I didn't think about the dye in the tylenol. You are also right about the genetic testing. I already know I am missing one gene, but it doesn't make it any easier when I need to take something like the antibiotic I will still have trouble with it. But it does help with not having to argue with the doctors about why I can't tollerate the meds. It is sad, because I am starting to wonder why I go. I feel like I can't take anything they offer, so why try. I've been told I was afraid of medicine also, and I was really sick, and being threatened to keep taking the medicine. I luckily found one doctor who believed the medicine was at least in part to blame, and told me to stop taking it. (xanax) But he wasn't my regular doctor, and with the possibility that they might be to blame, none of the doctors who did the prescribing would help me get off. I begged them to put me in a detox, which was recommended by the doctor, but they wouldn't, and told me to drop half a dose for 3 days, and I would be done. After 12 hours from my last dose I went into the emergency room having fits. I am fairly certain I had a seizure, because I lost control of my bladder. I did the rest of the withdrawal myself on my living room floor. I was given anything I wanted to try and stop taking it. I wouldn't call someone who had to withdrawal from a drug someone who is just scared of them. Sorry...I didn't mean to go on like this...guess we just opened a can of my worms! Anyways thank you for the support, and I really understand what you are going through with the med thing also. PM me if you want to talk. Suzy

Hi Jana, I have read that you have some heart problems on here. Is it because of the pacemaker that you have to take the amoxicilin? When I took it the last time I had a dental appointment I went to the cardiologist who prescribed it to me, and he determined I was having an allergic reaction. Which it did somewhat feel like one, but I didn't get hives or anything from it, and I get hives a lot. I was fine with the first pill, but you have to take four of those what are they 250 mg pills. About 10 minutes after the second one I started to go numb, and it was downhill from there. Now if I go I can't take amoxicillin, and have to take the next one on the list, which has way more side effects. The dentist pulling my tooth said I didn't need to take it, but I am very concerned about getting an infection in my heart, as I was told to always take it because I have insuficent valves. But he asked me if I had any mechanical parts, and I said no, so he said I shouldn't need it. Of course I went searching on the internet, and found a story about a guy who thinks everyone should take them, because his mother got a abcess in her brain right after dental work, and died ! So right now the plyers in the shed are looking like a good alternative!!! When are you having your crown done? I sure wish there was a different way to protect us from the endocardidtis. I hope you don't have any trouble taking the antibiotic. You know it is sad, as a kid I never had trouble with antibiotics. I think my body is just tired. Hugs Suzy

Hi Jana, I have read that you have some heart problems on here. Is it because of the pacemaker that you have to take the amoxicilin? When I took it the last time I had a dental appointment I went to the cardiologist who prescribed it to me, and he determined I was having an allergic reaction. Which it did somewhat feel like one, but I didn't get hives or anything from it, and I get hives a lot. I was fine with the first pill, but you have to take four of those what are they 250 mg pills. About 10 minutes after the second one I started to go numb, and it was downhill from there. Now if I go I can't take amoxicillin, and have to take the next one on the list, which has way more side effects. The dentist pulling my tooth said I didn't need to take it, but I am very concerned about getting an infection in my heart, as I was told to always take it because I have insuficent valves. But he asked me if I had any mechanical parts, and I said no, so he said I shouldn't need it. Of course I went searching on the internet, and found a story about a guy who thinks everyone should take them, because his mother got a abcess in her brain right after dental work, and died ! So right now the plyers in the shed are looking like a good alternative!!! When are you having your crown done? I sure wish there was a different way to protect us from the endocardidtis. I hope you don't have any trouble taking the antibiotic. You know it is sad, as a kid I never had trouble with antibiotics. I think my body is just tired. Hugs Suzy

Hi Maxine, I am so glad to hear that your ct shows no cancer!! woo hoo!! I am also sorry to say that I am just not soaking in what the rest of what you said means. My brain is on vacation. What is the mastoiditis? Suzy

Hi Maggie, I haven't read your previous posts on this, but I have had some of the tests done. I was missing a gene for cyp2d6. They want me to come back for the next one coming out, because he suspects that I am going to hae trouble with more then one gene. I got a printout of what I couldn't take, but I was never told I could call to find out. Where do you go? I had mine done at Mayo in AZ. And you know the worst part of this is I have the list, but I was so out of it with already being sick, and the pain, that I didn't even think to look at the list. For all I know acetametaphine could be on it....Duhhh....I feel dumb now. Have you found anything you can take?? I became so sick because I took medicine for over a year, even though I was getting sicker and sicker on it. I think I overloaded my liver, and may have caused some damage. Now it doesn't seem to matter what I take I end up feeling very bad. I am a little more with it today, but I feel like I am coming and going in reality. Thank you for sharing this with me. I am glad to know I am not the only one. Take care. SuzY

Hi Jana, So sorry to hear you are going through this. I'm sure you know what a hard time I have with meds. I just tried tylenol sometime in the last few days, and ended up too sick. It is hard to try and find a balance of what helps, and what hurts. I hope you can find a balance of helps. Take care. Hugs Suzy

Hi Janie, So glad to hear that you are feeling better. You desere it. Also good luck in the baby making department. I will be praying for you and your husband to be blessed. I imagine if the estrogen helps you, then being pregnant would help too. I don't know that much about hormones though. I just wanted to wish you well and tell you I am so happy that you are feeling better. Hugs Suzy

Hi Janie, Thanks so much for the support. Sorry you have to take narcotics for burning skin. That must feel just miserable. I am going to try catching up on what's going on with every one this morning while my brain is still functioning. I wish you didn't have to go through this either. Sometimes the only thing that makes it bearable is knowing we are not alone. Take care. Hugs Suzy

Hi everyone, I haven't been around for a few days because I have been so sick. I wasn't feeling too good to start with, when my bad tooth that is broken down to the gumline took off hurting. The whole side of my face, and head and all the way down to my chest hurt. The reason I haven't taken care of this yet is because the last bad crash I had started because I tried going to the dentist, and took and antibiotic, which sent me into a one year spiral of missery. And the worst part was I never made it to the dentist. I took the antibiotic, and my body freaked out. So my tooth took off hurting a few nights ago, (and to be honest I have lost all track of time, and can't remember when.) and I couldn't take the pain. I was ready to take anything to stop hurting. I found myself huddled on the floor crying hysterically, and decided to risk taking something for the pain. My mistake. I took some childrens tylenol, so I could just take a little at a time. I took all the way up to a pediatric dose for an 11 year old. It did numb the pain somewhat, but the price I paid wasn't worth it. From there I went into a tailspin of confusion, pain, severe headache, the list goes on and on. The brain pain and confusion were enough in itself to make me regret the decision. The only thing I remember of the last few days after I took the tylenol was moment after moment of pain and misery. And thankfully that is kind of blurry. I don't think that Drs., or nurses, fully understand what I mean when I say I can't take meds. I think they think I mean I don't want to. I REALLY do. I wanted more then anything to just pop a codeine the other day, and feel better, not worse. But no not me, I take childrens tylenol, and feel like I am dying. Now my kidneys hurt, my vision is messed up, but at least I am coherent today. Do you guys think that this is just from my inability to metabolize drugs? Why can't this be easier??!! Suzy

I don't have any idea's, but wanted to say I was just as upset when I found out. I hope someone has a doctor to suggest. That would be great. Sorry you found out that way. I found out from potsgirl on here, only one month after my dignoses. I had only talked to him on the phone once, and really didn't know that much about what to do. Suzy

Hi ladies, Thanks for the replies. Maxine, thank you so much for that. I do think I have severe problems with msg., because when I was in Phoenix once we ate kentucky fried chicken, (which always makes me sick.)andI got a really bad hive outbreak. I get them, but when I can connect it with something is when it is head to toe, and severe. I ate Panda express which they say doesn't have any. But that is important to remember, because when looking for salty you often do find msg. Thanks for reminding me. Jana, What is it about rold gold? they seem to have a better flavor. I think that is my favorite brand too. Thanks again Janie, I like the idea of the chicken broth. I used to buy reduced sodium!!! It really did help me, and I just hadn't thought about the fact that I had cut my sodium back. You just never know what information you share with someone that will end up helping . Like me I thought with the swelling I was doing something good for myself. I probably just needed to get off of my feet. So thank you for mentioning it, although I am not running a marathon, (or even working around the house) at least I feel a little better laying down. And my head is up!!! Suzy

Hi Everyone, Well as some of you probably already know I have been doing rather poor lately. When I was feeling really good my legs kept swelling up, and it was worrying me. So I thought I was just getting too much salt. So I quit trying to get salt in, and just forgot about the salt. In another post thankful said she eats eggdrop soup for the salt, and I thought wow chinese, I bet I could get my appetite going for that. So last night my husband bought me some, and I put plenty of soy sauce on it. At first I only ate a little, but I started to feel better right away, and went back for somemore, and was really hungry, and ate it all. I felt better last night, and even slept better with less pain. So this morning I wasn't feeling really good again, and decided the chinese was so good last night, so I went and got some more. After eating I am feeling much better. I would say it was just the plain fact that I ate, but I have been eating (though not enthusiastically) just not salty stuff. Then I remembered that I just decided not to eat so much salt!! I really didn't think it made a difference, but I guess it does. Just thought I would share that with everyone. I hope everyone is having a good day.....Oh and thank you thakful!! Suzy

Jump, Yes. I do completly understand this. It is one of the things that laid me up when I couldn't get out of bed. I litterally could not balance even sitting up. But this was when I was on meds, and everything was severe for me. I get it now, just not to that level. It feels like you are moving or the earth under you is moving. I will grab ahold of something to try and balance, but it does not help. I did tell a neurologist about this, and he did call it vertigo. It is an awful feeling because you just can't get away from it. I get it even when I am laying down. I have had many tests trying to figure out the cause, and they even did a physical therapy thing on me that has to do with the balance in your ears. It did nothing for me, so they said my ears were not to blame for this. Do you, or brokenshell find yourself holding walls when you walk? Or do you find that when you go to reach for something you miss it? I fall off of curbs, and even straight ground because of this. I also walk into things. Do you guys? I end up black and blue when it is bad, and have ended up with a bad sprained ankle too. I hope this improves for you. I wish I had some advice, but other then getting off my meds I have found no help for this. But I understand. Take care, and try and stay steady. Suzy

Janie, I am in tears crying! What a beautiful story. I can see where you get you kindness and compassion for other people. I can see how close you and your mother are. What a positive attitude you both have. Your mother and you will be in my prayers. Some truly wonderful people come out of some of the most difficult situations. I can see that has happened here. Thank you for sharing this encouraging story. (((((HUGS))))))) Suzy

Hi, I don't know that answers to your questions but wanted to say congratulations on reieving a dignoses, and getting some anwers. I am just curious also when I was diagnosed I was told I have Orthostatic Intolerance, but the doctor also gave me books on POTS. Did your doctor tell you you don't have POTS? Take care, and I am happy you are getting some good answers. Suzy