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morgan617

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Everything posted by morgan617

  1. Ernie, glad to know you are ok, haven't heard from you much. Take all the time you need, but hope to hear from you when you able to take a respite from your social obligations. Miss you. morgan
  2. Probably worth getting checked out. especially if it's getting worse. I took clonidine, but didn't tolerate it. Per the usual. They can check your carotids very easily and not invasive at all. I guess I always think it's better to be safe than sorry. good luck! morgan
  3. Firewoman, Did you have an ultrasound that found the tumors? If they saw them on that, they would probably figure there's no need to do further testing, as they can see you need the surgery. I am guessing that's their thoughts on further testing. Which isn't a bad thing, actually, because it's overkill, if they've already found a reason to operate. I had a HIDA scan done about 20 years ago and they knew clear back then that my gb was bad. If they had taken it then, I would not be dealing with this now, but my attacks were only bad enough to whine about, not do anything about. I often wonder why they even bothered if they had no intention of doing anything. Ah well, now there's no choice. At that time, however, I had not developed the stones. They were found incidently when I had a CT scan for something else entirely, and they still wouldn't take it out. All I had this time was an ultrasound and it showed them enough to know surgery has to be done. I know now that I have very similar attacks like lthis in the past. Just not as bad. I actually went to the ER a few years ago with the exact same symptoms and they said esophageal spasms, that's why I thought that's what it was again. I now realize how much I have been suffering with this stuff for a long time now. My symptoms are epigastric pain (right at the junction of the ribs and stomach) right upper side pain that radiates around to my back and goes into my shoulder blade. Kind of like I've been impaled up under the ribs through to the back. When it's really bad, it feels like I've been impaled from the mid sternum through to the back too. That is the most intolerable to me and when I usually throw up. The pain will sometimes radiate up into the muscles going from my neck to my shoulders, an achey sensation. It has really been affecting my pots, as I am not eating or getting nearly enough fluids down and when I do, it goes straight through. Yesterday I got up and gack, just threw up, no warning. But the diarrhea is awful. Anything goes in my mouth and my gut immediately goes into overdrive, so I don't think I'm absorbing my meds well at all. My bp is 170/110 and my pulse is too fast for my pacer to kick in. I am usually 100% paced. Dehydration, so you'd think my bp would be low, and only my primary knows that I am backwards in this regard. Everyone else thinks you can't be dry and have hypertension. I don't have jaundice, but I certainly have interesting pee and poo. I expect canaries to start twitting when I poo and my urine is way off, but not brown like you'd expect with liver involvement. It's the very dark orange color you get when dehydrated. The doctor said yesterday he doesn't think my diarrhea is associated with my gb. What a crock. Yellow poo like this means too much bile. He was so overwhelmed by me though, I didn't want to argue with him. I can't lie on my left side, I think because it weighs 20 pounds with all those stones in there, and it seems to put a lot of pressure on it or it moves it or something. It just hurts too much. I am actually just anxious to get this the heck over with. Please don't put this off. If they want to take it out let them. Not knowing is so much more anxiety provoking than just finding out. My anticipation of things has always been worse than the reality. That is not to say I'm not frightened, I am. but I'd rather just get it over with than stew about all the things that can go wrong. I am far worse with meds though, so I admit to being a hypocrite. I have yet to take any of the meds that might make me feel better, because I am more scared of them than surgery! You should at least get blood work to look at liver enzymes. The doctor told me something interesting yesterday. He said, you are never going to be as healthy as you are now, so we won't put it off any longer. He's right, the longer you go, the less well your body does. I told him I was sorry I hadn't met him 10 years ago when he could have talked to my doctors and he laughed and said, me too! If it's been six months and you are still able to eat and function pretty much as you have been, then my guess would be, it wouldn't be cancer. Of course I don't know all your history, but I do know with cancer, it's unforgiving and you probably would not have been able to put it off this long, you would go downhill pretty rapidly. Polyps in the gall bladder are pretty common and could certainly appear to look like tumors, but even benign polyps can go rogue on you, so why don't we do this together and see who recovers the fastest???? Anyone want to take bets?????????????????? morgan
  4. Firewoman, I am so sorry, I have no idea when or what I wrote that hurt your feelings! I NEVER want to hurt anyone's feelings! Please send me the post so I can see what I've done to hurt you. I would look, but have lost 8 pounds in the last week from vomiting and diarrhea. I did see the surgeon today and he is terrified of me, his words, but says it must come out before it bursts..nice. However, my pcp is on vacation till Monday and he won't schedule till he knows everyone is going to be around to manage my whole care. He was nice enough to admit he had never heard of any of my diagnoses. Usually they all go, "oh yeah, know all about that one" yeah right. Yes my bowel movements are an interesting canary yellow and like the end of a prep for a colonoscopy. Pure water. This is not a weight loss program I would recommend.... Firewoman, have they biopsied the tumors? I really have no idea what I said about the ejection fraction, but I am sure it was aimed at doctors not caring, not me. I do know tumors in or on the gallbladder are rare, but can see they would certainly impede the flow of bile and cause a great deal of pain. Again I am sorry if I hurt your feelings. I'm sure anyone who's been on here for awhile will assure you I try to be very careful in my responses, so as not to hurt feelings. We get enough of that in the outside world! morgan
  5. I'm glad you had some nice weather! Ours has been awful with no signs of letting up, but going to the doctor today, I saw yards filled with blooming spring flowers and it so lifted my spirits! You do have duff and Charm City cakes, I would love to visit them, they are such a riot! I would have them make you a sunny cake, but they start at about a 1000 bucks , so will just be glad you had a beautiful day! morgan
  6. Well, crappola! Please send her my good thoughts and prayers and I hope her stay is very short and productive. I didn't realize she was sick, well you know what I mean, that sick. My own universe as per the usual. Get better soon tea! hugs, morgan
  7. We used to give it all the time to patients, more for it's calming affects than itchiness. No one ever seemed to have problems with it. Sometimes I think we all just need to go back to the old drugs! Good luck trying it sweetie...morgan
  8. I barely read the research any more, but back when I did, it seemed all the studies involved people younger than me. I don't know if people are getting help at a younger age, while some of us just "lived with it" for as long as we could, because no one had ever heard of it. I have some other health issues too, I have found out, so even if my stuff was more regulated, the other problem would still make my life miserable and there are almost no treatments at all for it. At least they can't blow it off, well they can, but it's a genetic mutation and you can't blow those off as easily. My treatment tends to be as bad as ever, except for the doctors who've known me forever, so I just go day to day. Jake is showing more and more POTS stuff, and I know it's not going to be a short lived thing with him either, so as annoying as it is, I guess I hope the younger ones have a chance to get better treatment than I have. I do fear that when and if universal care kicks in, those of us with chronic, expensive long term problems will get even more of this. This is NOT a political statement and not meant to offend any political party. Even in the system we have now, the chronically ill do not, as a rule, get the same treatment as the acutely ill, or the ones who rarely get sick. Or younger folks. So, I don't research much anymore. morgan
  9. Hi Virginia, wish I could help. have damaged myself more than once. I never have any warning. In fact, we just moved into a house with not one step, it got so bad for me. I wish I had words of wisdom for you. Some people wear helmets on bad days, you know when you know it's just going to be one of those days, or you are in a situation where you could easily do harm to yourself. At least you don't have to worry so much about head injury. I think this something everyone who faints or falls or paralyzes worries about. Do you have a sitting walker or anything you can drop into very quickly? People use these all the time, because sitting can help when feeling faint. I'd rather land on the chair than the floor or down the stairs. I do avoid stairs like the plague and at one point just sat and scooted down them. These are not optimal ideas, I know, but it's been my way of coping. Hopefully someone may have better ones. I had to break a few things before I gave up on dignity over disaster. Good luck sweetie. morgan
  10. Atenolol is not a money maker either. As firewatcher stated, everything has the potential to have side effects and they have to (are required) to put down everything anyone has while studying a drug, whether they think it was caused by the meds or not. Suddenly stopping atenolol or any cardiac med would potentially be far more dangerous, in my opinion. I've been off and on it for years and years. On for the last 3. It makes me feel much better, so mine's not going anywhere....morgan
  11. bshert, My son was on effexor and went through the same withdrawals, including brain zaps. They were prescribed by someone other than his pcp, without his permission. He was infuriated. Effexor works really well for many people, but for others it's horrible. He refuses to prescribe it, but it is the most widely prescribed antidepressant right now. I have a friend who's never had a problem with it and has no intention of stopping it, ever. Jake was only on it a little over a month! The doctor said it can take a year to get over all the withdrawal symptoms, but that isn't common. Jake just finally gave up and stopped it and had the worst 3-4 days of his life, he got it down, but got stuck. It took about 3 months before he felt back to himself. However the longest lingering one was the zapping. The rest of the really bad ones went away within a few days. I don't have any personal experience of it, but it strikes me as a drug that if it works great, that's great, but don't ever plan on going off of it. Jake's doctor said it should not be provided without that warning. I am so sorry you are going through this, but it's not your fault, it's not an addiction withdrawal, it's a physical one from a drug that you should be able to wean off easily. You should not feel like an addict. Antidepressants aren't supposed to do this, or at least be this hard to stop. My guess is it will be a med that is pulled at some point. I hope you feel better soon. Jake is fine now with no lingering problems, no zaps for a long time. good luck sweetie! morgan
  12. I'm sorry, I couldn't choose one. At the time I'm having it, each one is the worst, although I hate having hours of irregular heart beats. However, it's only usually if it's hyperandrenergic pounding. Yikes, maybe that's it, since it causes a host of other symptoms. morgan
  13. I had to try a boatload of betas before I found one that works, but the one I take really helps control the surges of BP's and racing heart. It still causes fatigue, but to me the fatigue is a whole lot better than the ups and downs. I still have them, don't get me wrong, but the atenolol really helps keep it less intense, most of the time. It's probably the most helpful drug I take. I can't do salt for loading, but many people do much better with the compression hose. I have never tried them, I'm not sure why. Probably because my BP, until recently, has always been really really high and never low. I worry a bit about vagotonia at this point, but not much i can do about it and I am in a holding pattern with my meds. I take atenolol, valium, hormones, and potassium. I also agree with tea rose, it helps to have something to depend on if you need to sit in a hurry. morgan
  14. Thanks to everyone. A while after I whined on here, my doctor's office called and the nurse told me that Dan was mad, at the ER doctor! For maybe making me feel like he thought it was not a big deal. She was much nicer and we talked, so I am guessing she told Dan and he understood me better than she did. He gave me a bazillion pain pills and lots of zofran for nausea. I've never taken either, so input would be great. More than enough to get me through till he gets back, although I had another attack today. These are just awful. I can handle the upper quadrant pain, it's that's awful chest pain that radiates into my upper back that is just killer. I made an appointment for a consultation for Tuesday. They said please have your records sent. LOLOLOLOLOLOLOL Should I have all 4 charts sent? I called and asked the front office gal, whom I adore to just send my last record and labs, which showed totally normal liver function tests. She thought that sounded good. She also took care of the ultrasound I had done which showed over 60 stones. Dan does not want anyone touching me till he's here to watch over things, unless emergent. It would have to be pretty darn emergent for me to do it without him. I also told them I have to stay overnight or I just can't do it and she said that wasn't going to be any problem. We still have the durn money stuff, but then we always have, always will, but I am at least hopefully going to get this GB thing taken care of. I suspect I will be one of the lucky ones that ends up with chole syndrome. Anyway, I want to thank everyone for your support. I am done bawling and feeling sorry for myself. The money will work itself out and I'm good with Dan, which was my biggest deal. You guys are great! feelinbettermorgan
  15. Well, let me begin by saying the more my hubs and I try to do things right, the worse it gets. We moved into a new house, one step to get in and that's it. All one level and we love it. We had to short sale our house last year due to financial woes, am sure some of you can relate. The house we lived inpreviously? Rented? 1550 security deposit? Got 700 back, because there was a scuff on the wall in the bedroom about 3 inches long. I swear to God, that was their reason. Our closing heating bill there was 1025, because they have absolutely no insulation in the house and we had over 100 inches of snow. So then we needed to file bankruptcy, well, the laws changed and it took us 7 months to actually get it done, so we have had severe financial stress for over a year now. We moved out of the house we sold, before it sold. The 341 meeting for our bankruptcy was today at 11. You are required to go, no matter what or they dismiss your case. We could not file a 7, which would have liquidated our debts, so we have this honkin amount to pay for the next 3 years every month, or go to jail. The amount was based on Dave's wages before they cut his overtime completely, which was like a job. I'm not talking a few bucks. So, day before yesterday I have chest pain so bad I am sure it's my last day on earth, so bad, I am vomiting, sweaty, short of breath, you name it. I never got out of bed, couldn't hold anything down. However I chose dying over the treatment I would get at an ER. The next day my pee was completely orange, I was so dry and I felt horrible. The pain was a little better, so I called my cardio, explained the situation, thinking they would do a quick EKG and enzymes. They called back in 3 minutes and told me to get my buttocks into the ER. I called my gastro and he wouldn't see me till cleared by cardio, so no choice. It turns out, as the title says, I had a huge gallbladder attack. (They refused to give fluids to hydrate and kept me nothing by mouth for 8 more hours after 24 hours of not holding anything down, nice, huh?) I have had a bad gallbladder going back 20 years, have attacks on a regular basis, have canary yellow poo from all the bile it dumps, and my doctors have refused to remove it until my liver enzymes go up. Well, guess what, enzymes are up, running a temp, probable pancreatic involvement. So what do they say? Well, you sure have a lot of stones in there, aren't you lucky you've never had problems before. You need surgery. And send me home. This was from Er doc saying what Dan told him. Well, I drag myself out of bed today, thinking about the 1000 or so co pay I'm going to have from yesterday because I was not admitted, despite elevated temp and enzymes, and go off to the 13 meeting where they tell us we will have a whopping 1400 a month to live on for three years. This includes all copays (we meet our catastrophic every single year, which is 8000 out of pocket, my son is sick too) for medical, all utilities, every bill we have, except the whopping amount they are taking for the creditors. I call my doctor and talk to the nurse, and I explain that the doctor said Dan wasn't concerned about me having surgery, but I know that isn't.....HOW DARE YOU SAY THAT (sorry) is what I am interrupted with. He just realizes if you need it you need it. I am trying to tell her this is what I was planning on saying but I can't get a word in edgewise over her lectures on my attitude. I finally got out that I had been told he was out of town next week, and I wasn't sure if he wanted me to schedule it or wait, but since the pain is pretty unrelenting and I've had one slice of toast and one bowl of plain cream of wheat in three days, could I get something for nausea and pain. Understand, in 26 years, I have gotten pain meds from him 3 times. She said she would discuss it with him. What a day. I needed to know if he would keep me over night, because if he won't, I can't afford the surgery. I now know as much as I did yesterday, which is nothing. No one has called in anything for me. And now she has told him I said he didn't care about me, which is going to really make him angry, with me not having the chance to say that's not true. Oh what a world, what a world. Thank you for allowing me to vent. inagonymorgan
  16. I've been sick a long time and feel all the things you are talking about. Except I feel better when it gets warmer, because I can sit on my covered porch. I don't think anyone who never gets upset about our lot in life would have a problem. I question God, get really cranky, jealous, you name it. I am thankful for the things I do have, but it's very hard to think about all the things I've lost. I have many days where I'm ok with my life, but I also have many where I am certainly not. I think your feelings are valid and very normal. I would write a longer more sympathetic note, but sorry, a bad day. You are normal. morgan
  17. Dani, Most everyone on the site has GI problems, but bleeding is pretty classic for Inflammatory bowel disease. They can do a lot more for it now than they used to be able to. My son, Jake (27) has it too, related to his arthritis, he takes asacol and it keeps under pretty good control. He's on Humira for his arthritis but it also helps the gut. I'm sorry to hear you are having these problems, but the earlier you get them addressed, the easier to treat as a rule. Good luck sweetie. morgan
  18. NO clue Lisa, but did want to congratulate you on your new little one. morgan
  19. This is a symtpom I have when the BP is skyrocketing. I can hear my pulse in my ears, or just one ear. it drives me nuts. Now, for some reason, totally unknown to me, my BP seems to have dumped, but my body still acts like it's shoving upward, even at lower pressures, I still get the rushes or "surges" as I like to call them. And my beautiful scarlet throat. morgan
  20. I so get you. I am most certainly in the 20%. If there really is such a thing. The more they find, the more questions there seem to be. Man a few years ago I was still driving and now I'm in a wheelchair. I do think some do get better, or at least well enough to function in the "real" world. But, like sophia, I have been sick my complete entire life, I don't ever remember any time of just feeling really great. That's why I was ready to stop after one child, but I guess God wanted me to have two. He is an absolute blessing and I love him more than life, but I also know my kids have suffered due to my illnesses. Jake says he won't have kids, because we are well aware of our "cesspool" gene pool. Unfortunately I wasn't. I know I have passed this on to him and his dad passed on the arthritis. He would still choose to be here, and I would never choose to not have him now, but if I had known, I would have chosen not to have children. That is a big regret for me. I have adapted to so much stuff, the list to what I haven't had to change would be shorter. I don't know why doctors say that and I'm not sure what studies prove this. I saw a study a long time ago that said 95% of the patients in the group had recovered, only to discover there were something like 5 people in the group! All with adolescent and sudden onset. This is a disease where they haven't even found a defective gene that I know of and even after finding that, it's years and years before it helps with anything. morgandowner here. My doctor says he can see my progression from just visit to visit any more. And states my prognosis is fair to poor. That's why I don't spend so much time searching and being willing to go anywhere and do everything, just to hear someone say, gee you've got OI! A complete about face from 2003-2004. That wasn't very long ago. I lost my BP cuff somewhere and we moved. Dave bought a new one and I took my BP today. 90/80. paced at 70. So I'm thinking vagotonia at this point. yes I do know how rare that is, but you oldies remember when I couldn't get my BP below 220/130 and my pulse was way whacked out? Now I wonder why I'm so tired?? I think if I didn't have the pacer, my BP and pulse would not be compatible with life. Well, a vent that has nothing to do with the thread, except for so long I hoped and prayed I'd be one of "many" that would spontaneously resolve. You never want people to lose hope, but false hope is even worse. I did work for a very long time, although sick, I did manage to get my kids raised, and once I did have a life as opposed to an existence. I also know that this is an annoyance for some and never progresses beyond that. But as far as cured, I just have to wonder. sorry...morgandownerdragger
  21. Sounds good in theory I guess, but IV's do have to go somewhere and unless it's a continuous thing, I can't imagine it being a steady help. For the short term, it would plump you up, but it absorbs pretty quickly into the system and you are back where you started. So unless you are getting it steadily, which I wouldn't want to do, get around with a constant bag of fluids going, I'm not sure what the long term benefits would be. I have had a few times where they've run an entire bag wide open and a bit later I will feel better, for a bit, but not long enough to be stuck on a regular basis. For those that can't get anything down, of course, it has to be, but I'd pass on a continuous IV pole hanging around my house. And the port can be troublesome to some, like me, with a pacer, too high a risk of infection. But we are all different. morgan
  22. It may be the accident caused a weakened area that didn't show up, kind of like a small anuerysm or something they missed. Maybe they assumed an area was a diverticuli, when it was actually a bleb from the accident. Will probably never know, but it sounds horrible. I have tons of GI stuff too, gastroparesis, yellow acid stools, but never constipation and I take immodium every day. I was having a horrible time with the diarrhea and looked it up and saw that the gall bladder can cause this, yellow stools are an indication of too much bile in the gut. I have had a horrid gall bladder forever. My esophagus is the opposite, way too tight, I have to get it dilated to get food down. I'm not sure what happened with your bowel, but my guess is, they missed a little thing in there and it was just a matter of time. Hopefully when you are fully healed they will do a colonoscopy to make sure the whole colon is okay, so this doesn't happen again. I am shocked they didn't operate, to get the waste cleaned out of your abdomen, whether or not you responded to antibx....morgan
  23. Ten days, good grief! It could also be a bartholin cyst, they are very painful and make you feel crummy too, although a doctor usually knows what they are instantly. But then, after worththewords experience, who knows. I would call and get the results, because if you are really breaking out constantly after never having had it a single time, you need to figure out the culprit for that anyway. I still wonder if it is though. morgan
  24. My last day of work was March 17, 2003. I am 54, so should still be working my buns off. I had to quit at 48 or so. What a bummer. morgan
  25. Rene, it's like drugs, even if they can't be sure a side effect was actually a side effect, they have to put it in the info. In 13 years I never saw a single one of the complications you have mentioned. Heart attacks and strokes would actually be caused by breaking off a piece of plaque, which you didn't have, so that would be at the time of the cath itself. And they have ways of making sure the plaque doesn't cause the problems. People with severe heart disease are much more at risk, simply because they are a walking heart attack to begin with. And although many people do go home 2 hours later, (I did) they wouldn't be allowed to drive, They seldom, if ever do these without drugs, except in very special cases. (say for instance, Miss Mouse) I've never seen infection, and as for blood clots, nope. You should be able to do pretty much of anything you can by now. If this was done Thursday, it's all healed over and you are past any of the stuff you are concerned about. Blood clots can happen to anyone, with or without a heart cath, so you see, it's just a cover the behind type thing. Nina, I felt that stuff too and remember telling him to stop giving me pvc's, I didn't like them. He said, give her more drugs and I was lala again....morgan
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