morgan617

Thanks, I was trying to think of how to word that, but couldn't. We are all at lots of different places in the course of our illnesses and what may apply to some has no bearing on others, what hurts some, others haven't experienced yet, and hopefully never will. Having known sunny fish girl for a long time now, bitter is not a word I would use in reference to her. I think we all struggle with our feelings and we all need to be able to express them, without fear of any judgement from anyone on this forum. I can't remember who wrote the apology, but I really don't think that's what miss sunny fish was looking for when she started this thread. (sorry melissa, I am taking liberties here) like me, she is not bitter about what we have lost, she just doesn't want people to think we are better off or worse off. Just in a different place. And words that can seem very innocent to the writer can sometimes be hurtful, even if said with no thoughts of malice. We are all a bit sensitive here at times. I do not believe there is a single person in mind when we bring up subjects like these. They are general statements, just as she said they were. And no one should have to feel they must apologize or become defensive. it's just food for thought. period. And as ernie so eloquently stated, until we walk in someone else's shoes, we really don't know what it's like. And I will reiterate that a computer is not able to send the feelings behind the words. A sometimes very hard lesson to learn, especially if this is all you have as an outlet, which is unfortunately the case for far too many. This is a tightly controlled forum, but I see that as a blessing and an opportunity to express ourselves more openly without things getting out of hand. I hope others see it that way too. mama morgan

Welcome Ana, I am completely exercise intolerant. I can't even get physical therapists to work with me! If I do any exercise, I do it in bed, so if anything happens, I won't hurt myself. I have come to terms with my weight and don't worry about it any more. it's not worth it, so it's at the bottom of my things to worry about list. Check with your doctor and see what he/she recommends for you. That may be the best way to go. Good luck! morgan

Yep, it's not the going, but the having to go that gets me. I can get fairly light headed after, but the sensation that I have to go tends to cause me more problems. I am not regular, they are not smooth and easy however. I do think it's usually a vagal vasal thing though. You are not alone and it's not a strange question. It has been discussed quite a bit on here. morgan

I've had it done and if I didn't know what a fog head I was before, I sure did after! I actually found it interesting and one of the few tests I've had that showed ME how things have changed for me. You have to have an open mind going in though. I had to have them for disability, and it was a bit disheartening to see how much worse I am now than 5 years ago. But I think it's a good idea for a baseline, and then later down the lineif you do need disability it can prove to be helpful. good luck! morgan

Hey sophia, (not to hijack) but I never realized how much a broken collarbone on your dominant side can affect your ability to do anything. It seems to be just about back to baseline, as long I don't allow a P.T. push it around..LOL Nice to "see" you too...morgan

No offense taken Melissa, I just felt I needed to clarify a bit. I was pretty rummy with the first post I wrote and can understand how it might have been misinterpreted. We are all in this together, and most of us frustrated by our lives at any given time. I think Ernie said it very well. We are all on varied and different paths, some having gone through most of all of this and closer to the the end than the beginning and others every where all along this path. I have gotten much better at not taking anything personally, unless it's some crummy doctor judging me, but not on forums anymore. And a post can not be interpreted like speaking in person can ever be. When you can't see the person, hear the inflections, or see the body language, it's very easy to hear what you want. I had to get about a million lectures from the hubs before I finally realized he was right! LOL. As you can see, I've been here awhile and posted a couple of times and know that sometimes these can get a bit unsettling before they get back on track. I think we are all fine here...morgan

If my response made ANYONE feel dissed or offended, I am truly sorry. I did state that it might be taken in a way it was not meant to be taken. I believe that most of us on this site are very disabled, whether we work or not. I personally know what it was like to be let go and to have to change jobs, try to raise kids, try to make ends meet and decide whether to pay bills or feed my kids. I know the feeling of thinking I can't get through one more hour of work, let alone one more day, and God forbid, years. I am one of very few people who got disability on my first try and feel like it was a miracle I did. It seems 99% of you have to fight for years for it, and what the heck do you do in the mean time? We went deeply into debt, borrowed from my sister and went without, however, it was for six months, not 5 years. My heart goes out to everyone on this site. My brain does not work as well as it should and I apparently set off people I don't know, and whose situations I don't know personally. But my guess is, I have been where you are. As I said, my husband works a million hours a week. Some don't have spouses or significant others to help, so I know how lucky I am in that regard. If something, God forbid, happened to him tomorrow, my son and I would be on the street, period. As I stated we lost our house and are signing bankruptcy papers tomorrow, so I am guessing I am not a good one to be telling people how to get by when you just can't work any more. Jake did get what's called GAU money from the state, but it's 200 dollars a month. He does qualify for 100 in food stamps and does get medicaid. However, I know if he didn't have his dad's insurance as his primary, he wouldn't be seeing the doctors he has to. This would be absolutely useless to him if he didn't have us. They say there are many programs out there for people like us, but I have yet to find any and I think most of us, including the ones working are pay check to paycheck, and need the insurance, and certainly the income. My perspective is that of someone who became less and less able to work and finally just couldn't. Some of us are there, some not quite there yet, but maybe headed that way, and some on the very slippery slope. I thought I had read every post and didn't find them to be awfully negative and the two posts since mine indicate a downward turn or the judgement of others. Which would, it appears, point to my post. I can assure you, I am not in a position to judge, just state how this has affected me. I used to wish every second that I didn't have to work anymore. That's what I meant by be careful what you wish for, because my life has certainly not improved because I don't work anymore. It has, in fact, gotten worse. Therefore, I don't have any good suggestions for people, as much as I would like to. What I may have assumed, is that what has happened to me must happen to everyone and maybe it does and maybe it doesn't. Regardless, I don't envy the people who suffer through every second of work like I did, although my post apparently suggested that. I do know, that as sick as I was when I was working, I did not have foreclosures and bankruptcy looming over my head and that's what I was trying to say. Not be grateful that you feel like crappola and still get to work, just that sometimes it can get even worse if you don't. But those of you still working when you shouldn't have to be, already know this, or you wouldn't be. I think the reality is, it's like our illness, different for everyone. For some, their lives would be much improved if they could quit, for others it wouldn't make a huge difference, or it could just get worse. Hopefully the people that do know me on here, know that I never come on here with any intent of hurting anyone in any way. I am an overly sensitive person in my own right and try to take great care not to hurt others, but that apparently did not come across in my post. I don't think of myself as being bitter at my life anymore, I feel I am mostly resigned to it. That isn't much better than bitter, but being resigned takes less energy than being bitter and angry, so it's all I can muster. I wish there was a magic formula for all of us. So, again, if my post has set off a lot of people, I apologize. I won't apologize for wishing I could still work, but I do apologize if I made people angry because I don't and wish I could, and they wish they didn't have to, but do. Every time my hubs has to wipe my butt, I really wish I could work again, and think of the irony of all the times I wished like anything I didn't have to. And that is where my perspective comes from. The same as some and far different than others. Like our illnesses. morgan

Sweet Ernie, you know how I feel about all this, but I am so proud of you for coming into the open about it. What a big step! I am glad you have received so much support here. My heart is with you. (Heather, I am one of the 4 that paralyzes too, and if you paralyze like Ernie and I, you would definitely know that indescribible (sp) feeling of vulnerability ernie must have felt) I know I do. it's about the scariest thing about the paralysis. Sunny fish, I am going to look into the site too! Sending you love and hugs Ernie! morgan

I haven't been here too much lately. Broken bones, dead computers, etc, but I really need to reply to this post. I started working at age 13. I have been sick my entire life. When I was in nursing school, I went to school 8-10 hours a day and worked 12 hour shifts on the week ends as a waitress. Since my teens, I have said working was so hard for me, but I didn't have any choice. My first husband was brutal about it and then I had to support myself after my divorce. Since my second marriage, we have always struggled financially. I just got up, did what I had to and nothing else. My family suffered for it, but we needed the income. I told my doctor continually I just didn't know how much longer I could do it. He just kind of stopped listening, like everyone else. And then one day, I went from a 14 hour day to disability. I may as well have hit a wall going 100 miles an hour. I was just done. As much as I complained for years and years, it never actually occured to me that I really wouldn't work till I was 67. Not in a million years. I look back now and wonder how I ever did it. How many mistakes I may have made I will never know about and the ones I will never forget due to an illness no one believed I had. We lost our house this summer. We managed to short sale it rather than foreclosure, but we still lost it. Our lawyer is filing our bankruptcy papers Wednesday. We are not having Christmas this year. If I had the choice, would this be our life? God NO. My husband is over 50 and works up to 70 hours a week, but between my son and I, our medical bills have killed us. I know you are similar in age to Jake, Melissa, and I see his frustration at the fact that all his friends have moved on, have lives, have babies, or significant others and he's stuck in some fricken time warp he can't get out of. Is this what he chose? Of course not. My point here is, when you can't work anymore, you can't. It doesn't matter that your entire world is falling off the face of the earth and you may end up living in your Dodge Neon, praying the heater doesn't break. I have to say, at times, I am a bit jealous of the people who talk about their jobs. I do know how hard it is. The last couple of years I changed 5-6 times trying to find one I could actually do and failing at every one. The last day I worked? Should have been an 8 hour day, it just took me 14. I would be thrilled to be a greeter in a store like home depot at this point. I am sitting here in my power chair, looking at my commode chair, as I type this, thinking...how did this happen and why am I not in bed sleeping because I have to get up and go to work tomorrow????? Through my jealousy, I am happy some of you are still able to work, and I hope you are never in the position many of the rest of us are. Since I hardly know anyone on here anymore, I can't possibly be aiming this at anyone, so I hope no one takes this personally, it is not meant for anyone to do that. But I do understand how you and others feel Melissa. I go to doctors appointments and for tests, period. So for those of you who just don't know how much longer you can do it, my advice is to appreciate the fact you still can, as hard as it is. Trust me, being home bound, losing all your friends, and possessions has been far worse than forcing myself to get my butt up and go to work ever was. I would do anything to work again, so be careful what you wish for. My heart goes out to anyone who ever felt like I did working, because, trust me, I know how really hard it was. But when that choice is ripped from you without you getting to make the decision, my heart will break for you then too. This is definitely a rock and a hard place, our lives, whether we are living to work, or working to live, or just existing in some void having no idea what's coming next. Sometimes I feel sorry for some people who think it can't get worse, because trust me on this one too, it ALWAYS can. I also realize that this is a sensitive subject and there are going to be people who think this is directed at them, or there may hurt feelings, but we are adults and these are the realities of our lives. No one really healthy would be wasting their time on here, unless they were a troll, but trolls don't last here, so everyone understands that we are all in bad places, but bad places is a relative term. I don't work and haven't since March 18, 2003. I will never work again. But I wish like anything I could say, "I just don't know how much longer I can do this", and then get up go to a job. morgan

I have never heard of the one thing, but since I have to take 3 immodium a day now, I'm not sure magnesium would be a good answer for me. (Think MIlk of Magnesia) Beggiatoa, I have been having in home care and the pharmacist has recommended magnesium and vitamin D levels be drawn. I have a condition, not related to my POTS, that affects not only my POTS, but any time my potassium shifts in any direction, it causes me to become paralyzed, go very limp and although I am not unconscious, I am completely limp and unresponsive. I take a really humongous amount of potassium every day, 160 meq, which would over dose 99% of people and kill them pretty quickly, hence sophia's response about taking magnesium. It can only take a few diarrhea stools to put me in cardiac arrest with this condition, so it's not something that we could take lightly. I believe supplements are good for many people, but we must all be very careful about what we put in our bodies and why. Non traditional treatments have their place, just as traditional ones do, but hopefully we all take either one with the counsel of a health care provider, and with the understanding that it's something our body needs. AS a nurse, I had the horrific experience of seeing a baby taken by emergency c section, while mom was having a pacer inserted for her cardiac arrest, because she decided to take milk of magnesia to help induce labor. She ended up in ICU in severe kidney failure and comatose, with an uncertain prognosis for the baby. This is an over the counter drug and therefore considered completely safe by many, but my experiences as a nurse have taught me we must be very careful about everything we put in our bodies and make sure they are neccessary to our health. My son Jake has been put on vitamins, and every time they do it, it really exacerbates his inflammatory bowel disease. We just went to Oregon health and sciences, where they actually drew magnesium levels and his is too high, so he develops worsened diarrhea from the magnesium in the vitamin. It's a balancing act for all of us, to say the least. I have pretty much gotten over the visit and realize ER doctors have 3 diagnoses and treat 3 things. Cardiac arrest, drug seekers, and psychos. They see nothing else in their heads and are waaaaay too lazy to go outside that box, at least where I live. Since I refuse their drugs, and have not been in full arrest, I am in the psycho realm of their tiny closed off world. That's the way it will remain, and I come to terms with that after a couple days of fuming. All that seems to get me is sicker. So I am working on not giving them that satisfaction. I have felt anxious, but have never had an anxiety or panic attack. The paralysis episodes take away my ability to feel anxious while they are happening. I did finally see my cardio and informed all of them that I do NOT appreciate, in any way or form, being the butt of their jokes. They can be stupid enough to think anything they want, but as professionals, they have absolutely NO right to make sure I know they think I'm crazy and I do not appreciate being the butt of anyone's jokes. They need to think about how they'd feel if it was them, or someone they loved. They acted chagrined, at least till I was gone, but then who knows, or for that matter, cares. At this point, I've done all I can. I do appreciate everyone's input and see my primary in a week or so. They come draw my blood every week at my home, so we will see if he follows her recommendations. The pharmacists. Of course she is recommending a bunch of drug changes and he will be VERY resistant to that, stating he is not going to be the one that kills me...LOL. One at a time, maybe, but not a bunch at once. Thanks everyone, I do appreciate everything I read here. morgan

That's wonderful Ernie! I'm really happy for you and hope it helps. I think if I ever got a bed like that, I might never get out of it! morgan

Hi Corina, I'm glad it is going as well as it is, although it's never fast enough for any of us! I have a power chair and a transport chair, which are not made to propel yourself. The only suggestion I can make is, propelling yourself manually is very difficult and takes up a lot of your energy. Maybe you should use that energy to concentrate on other things you really want to do, as opposed to using all your strength to propel yourself. Then you can concentrate on the things you want to progress at more. I don't even attempt to push myself, I wouldn't be able to do anything else. And we all know that just because we aren't on here everyday, we never stop thinking or caring about each other sweetie! Take care and good luck! morgan

Thanks for all the sweet and supportive responses! I am doing a lot better with my pacer tweaked. Lois, I swear they were junctional beats I was having, but I couldn't see them well at all. I called my doctor to see if he wanted to tweak my betas, and the cardio won't touch my meds. My primary wants to give it a week till i see my cardio and then decide what to do. I guess there is a syndrome where the pacer can actually cause the problem, but my underlying rythym is about 25. So it won't work to shut it off. It is so pathetic. Er's have only two types of patients, it seems, drug seeking or crazy. Since I won't take their drugs, I only fit the crazy category. My family doesn't get why this bothers me so much, but it only perpetuates their thinking if I have to go in again. If all they pull up are crazy diagnoses, then that will be their mind set. Everything they do badly just carries over to the next time. It's so sad. I do know I'm not alone, but that sure doesn't make it okay! morgan

I can handle it about 10-15 minutes at a time, max....morgan

Well, I just couldn't take it anymore. I have been coughing my head off from arrhythmias and have barely been able to function without getting short of breath and feeling awful. So off we went to the ER. I did call the cardio on call in advance. They got me right in and did an ekg, drew some blood and did a chest x ray. They doctor came in and said I wasn't having pvc's. I told her I didn't say I was, I had no idea what they were, just that they were constant and really starting to make me feel crummy. She listened for about 5 seconds to my heart and said someone was coming in to interrogate my pacer. For those of you that don't have one, that's when they go in and pull out all the info stored in it, like how much you're paced, how many runs of vtach you've had, the battery, and they can also adjust settings if needed. I do have runs of vtach. I paralyzed, because they wouldn't let me have my potassium, and asked for a commode chair, because my wheel chair wouldn't fit in the ER bathroom. Then I lay there and Dave sat there for 3 hours waiting for her to show up. We never put on a light, never asked for anything, never bothered anyone. I was coughing constantly and Dave was saying my heart was doing really weird things. I was having early beats almost every other one. Which means only about one half of my heart beats were effective in getting blood to the rest of my body. The doctor came in and sat down and said, you aren't having any arrhythmias but we will send in the pacer gal when she gets here. I frowned when she said that, but didn't say anything. The gal came, said I had a fair amount of pvc's, but a boat load of pac's. I said people see this as benign, but because it doesn't fit in the norm, they assume, you can't possibly be affected by it. She said that was not true. She said most people would not be affected by it, but some people just are...say if you have about a million other health problems. She raised the rate of my pacer so there would be less variation in my rates which Dave and I had already decided was the problem. Not necessarily the rhythm itself, but the result of it. I just don't tolerate a lot of variation in my heart rate. She stopped the pacer and my rate dropped to below 50. I didn't know what she was doing, but got really hot and blam...out I go. She seemed very nice. She went out to tell them what she had done. She said, I was having a LOT of pac's and she adjusted my pacer, then she said something really low and they all started laughing. The doctor comes in, tells me I'm one of the most anxious patients she has ever seen in her ER and I need a lot more valium, and I could go. I told her I was NOT anxious, but I was really sick and tired of being treated like crap by people who were to first do no harm. What she saw as anxiety was in reality anger and frustration at a hospital I was forced to go to where the care is so bad, I have to feel half dead to go. Would the most anxious person in Spokane have waited 5 days to go there or seek help? So my discharge papers say palpitations, increase valium as needed for anxiety. nuff said. sosickofitallmorgan

My son has used it for quite awhile with no ill effects. he didn't tolerate reglan at all. It doesn't give him any worse diarrhea than he already has (crohn's) and we are happy with it. morgan

Hi Kendra, I think a lot of us have been tested for seizures and few of us have them. Are they sure it's not just some aspect of your narcolepsy? If it's seizures, they sound pretty atypical. Hopefully they schedule you for a test quickly, because they know pretty quickly. Good luck and hope it doesn't interfere with your house! morgan

Sometimes it's a bit hard to distinguish exactly what is happening, because on the monitor the beats are so squeezed together. Even for doctors with experience, and the faster the rate, the more squeezed. Atrial flutter is very commonly misdiagnosed as psvt, or sinus tach, because it is sometimes very hard to see the p waves that are in there. Doctors will sometimes disagree with each other. Unless they have some way of actually slowing your rate and still seeing what's going on, it can just be harder to tell. The important thing is to remember that even though really fast atrial rates can sure make you feel crummy, they are seldom lethal. Doctors very seldom have any problems diagnosing ventricular problems, they are very different. The pounding is called a hyperandrenergic response. Mine does that too. It doesn't have to be fast, but it feels like it's going to burst and you can actually see my chesting moving with the beats. This a truly miserable sensation to me and really bothers me a lot. I really don't know why it happens, but am guessing it has to do with a surge of adrenaline or something. Typically my BP is surging upwards too. Atenolol has helped a lot with it, but I still get it with my periodic paralysis (which is another weird little disease not related to POTS, except for some overlapping symptoms) morgan

Hindsight is always 20/20 and there is always going to be someone willing to mess with things they know nothing about, at our expense. Double oh my!!! My SA node may have burned out at some point anyway, we will never know, but I am pretty positive the ablation sure speeded it along. It's kind of sad, as I used to take care of people who had ablations for what they were intended for, and they always did so well. What a rude shock to realize what it did to me......spilt milk I guess. morgan

I've had several of them and they are very painful. I have a very small capacity and they always overfill so they can get a good look. No matter whether you are healthy or not, cystos are never ever fun....as far as eds, I would think you would be more prone to having an atonic or insensitive bladder, but with what I know about it, you could put it on the head of a pin. morgan

Lois, Hi there sweetie! I think the atenolol keeps my rate under really good control at this time, so between that and the pacer I have, I think it would be fine with me to stay like I am. Nothing seems to go very smoothly for me anymore, and right now I sort of feel like if "it ain't broke" I don't want to mess with it. My primary is totally convinced the ablation is the reason I now have a pacer. I think I am too. The future of medicine in the areas of heart disease is pumping along at a good clip, so who knows, I may be eating these words in a year or so! morgan

Sorry, broken collar bone and ribs have prevented me from being on the computer much. I had ablation in 2003 for tachycardia. I never worked again. The tachy was the only thing compensating for me. Eventually my tachycardia came back anyway. The EPS I have now flatly refuses to ablate people with autonomic dysfunction. That being said, in 2006, I started having partial syncopal episodes, as soon as i hit the ground, I came to. I was convinced it was heart related, but couldn't convince my doctors. Dave, my hubby finally took me to the ER one night because I was having awful arrythmias and was very symptomatic with them. They discovered I was going from rates of 130-150 to 25 in about 3 beats, hence the falling on my face. I finally got put on an event monitor, which recorded these events and had a pacer in less than a week. It was for tachy-brady syndrome. I know of NO pacer that corrects a heart rate that's too fast, except for internal defibrillators for ventricular tachycardia, which is completely different than sinus tachycardia. Pacemakers are for people who's rates drop too low. My rate will never go below 60. It will record anything above 150, but it won't do anything about it, it is for information only when they "interrogate" my pacer every three months. The pacer has been very effective in assuring that my rate will not go below 60 ever again, but it does not help in any other way. I appreciate what it is meant for, but fully understand it's not going to help anything else. If they had pacers that helped with both, my EPS would be calling me to get it placed yesterday. Whether the ablation caused the need for the pacer is debated by everyone. ( scar tissue, damage, whatever) I can tell you from the standpoint of the reason I got it, I am very pleased, but I also understand that's all it's going to do. I hope that helps a bit. I'm very foggy anymore, but that's kinda my story in a nutshell. Hey hey hey cardiatech!!! morgan

Hi sophia, all I've ever seen on dexa'a is the grainy paper. It's been enough for all my docs, usually they just want the numbers page. When we took Jake to Oregon, they wouldn't even fax the paper x rays. he's not at all impressed with my town's medical system...... morgan

I got it on my first try, but I don't believe they used POTS per se. As far as I know POTS is not accepted yet by ssdi. Arrythmias causing syncope or some other way to word it (semantics) works much better. I googled it and found it right here on this site, so you might archive it. It just came up on google and I have no idea how to paste it for you. sorry, I can barely get this thing turned on any more. morgan

Hey there, I've been on hrt's for at least ten years. It can take your body awhile to adjust, or you may have to play a bit with them (what's new with us and meds?) some women have a very hard time getting used to progesterone. If your breasts get very tender, it's a sign the estrogen dose is too high. Many women find the "natural" progesterone creams work better than the pills and things. The more non synthetic the drug, the less the side effects. For instance, I use estradiol, and have no side effects at all. Premarin caused me to gain an incredible amount of weight. Unfortunately I don't have the experience with the progesterone, because I've had a hyst. i wouldn't take it, simply because I don't want to deal with the potential side effects. A lot of people have the theory now that we need it regardless of whether we had a hyst or not. When you have a uterus, you need it so the lining doesn't build up and cause abnormal bleeding in post menopausal women. For those who are menopausal and don't tolerate the progesterone, they have a ring they insert in your uterus and it stays there for 5 years, is non systemic, so no nasty side effects. I am not surprised it has changed your cycles, and that should settle down, you should give hormones about 3 months to allow your body to adjust. If the side effects drive you crazy, there are a lot of different kinds of hrt out there to experiment with. I basically go with the theory if it doesn't hurt me more or make me miserable, then the benefits out weigh the risks, but this is a decision only you can make for yourself. I know they had that huge study that showed an increase in everything you can have go wrong and there are breast cancers fed by estrogen to be sure, but it's like vaccines. Do the benefits outweigh the risks? For me they do. So I guess you need to decide if these changes are intolerable, or if you want to try a different one and see if it's better, or not take them. The risk is much higher for smokers, so I guess my thoughts would be a bit different in that regard. Sorry, this is wandering, but hope it helps a bit. morgan