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About smurfette

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  1. Beanie, I am on Procardia and the one thing I have noticed is that I have far fewer episodes of Raynaud's as a result. It does lower blood pressure and that is something that must be considered because Viagra and drugs of that type also lower blood pressure. If your doctor is going to be considering Viagra just remember to tell him about ALL the drugs you are taking, especially the Procardia because they may interact and cause a dangerous lowering of your blood pressure. It is important to keep your entire body warm, not just your extremities warm also so that you can fend off cold. That also deeps the episodes of Raynaud's away. I wish you luck and let us know what happens.
  2. I have CREST and it is a very complex disease. Everyone of us with the disease has very different symptoms. I do have crushing chest pains frequently, but those pains are caused by esophageal spasms. Those pains go through to my back. They are not skeletal. I do have some shadowing on one of my lungs and that does show up on an x-ray. I also have severe pain if I touch between my ribs. That is where the esophagus joins the stomach. So, based o the above some of the location of your pain sounds similar - however the bone pain is different. If you are not seeing a doctor who specializes in CREST and autoimmune diseases you need to change doctors. It sounds like the pains you are feeling can be from a lot of different things and you need a work up to find out the cause. If the pain is all over your chest it could be related to CREST, but you need to give a history to a doctor who knows about the disease. You probably need an endoscopy to see if the pain involves your esophagus - it can feel like your whole upper body is on fire. I feel chest pressure when I am having a flare. As I said we all feel different when we are under attack. CREST testing is more than a blood test. Certainly all the increased stress in your life can bring on a flare and all the symptoms that you are experiencing now are rearing their ugly heads because you are so stressed that they are having a field day with you. Why not - your defenses are down when you are most stressed. I would first thing get to a specialist and see about a round of tests to stop the chest pains - they will want to rule out cardiac involvement. I am surprised that you did not mention having that ruled out already. In this day and age with malpractice premiums what they are I would assume that no doctor would have let you pass through without a complete cardiac work up just to cover their bottom! Considering you have been complaining of chest pains that is the first thing that must be ruled out. Giving you pain pills and not ruling out angina, etc is the height of stupidity at the very least. I hope that you get a resolution to your pains and are no longer suffering. Feel better!
  3. Don't worry too much about each and every test result. Sometimes they say things other than "normal" but our doctors are not concerned and that means you have to ask for more clarification. I often have blood work where one or two tests are out of range a bit and they frequently mean something as meaningless as I was a bit dehydrated or I was particularly allergic that day when the test was taken. Not every result that is not quite normal means it is a very serious problem or even a problem at all. As long as you have good communication with your doctor and you ask questions about any results about which you have questions, then you are more than half way there. The most important component of the doctor-patient relationship is good communication. If you cannot get your questions answered to your satisfaction then you will not feel like an equal partner in treating your disease. You will also have all kinds of unnecessary anxieties about the course of treatment, including test results. I understand how you would be concerned about that test in particular so if I were you, I would call him, if you are not going to be seeing him soon, and ask about those results and ask for a more explicit explanation. Or, get a second opinion from a cardiologist that you trust. If you do not know one, after speaking to this doctor, ask him if he thinks a visit to a cardiologist is a good idea and if so, ask him for a referral. Our disease thrives on stress. If you allow the lack of an explanation to stress you, you are putting yourself in a position of being more stressed. That is the last thing you need. Take care of yourself and stand up for yourself at the same time. Demand to have the results explained. Be forceful but appropriate. You will get the information and not be so stressed and therefore will be benefitting yourself. Good luck and feel better. Remember tests are not always right. Don't be upset. It is probably just as your doctor said from the beginning - a big nothing to worry about. Just get what you need to stop stressing and get on with taking care of yourself.
  4. My daughter is a singer and menthol is a major no-no. It is terrible for the vocal chords, it burns the chords and the throat. I guess it would be bad for a throat or esophagus made sore with reflux as well. My daughter takes nexium twice a day and other meds and also an antacid for reflux breakthrough when she is having a particularly bad time. It is not unusual to be prescribed more than one med for reflux. There are teas that are also helpful for your throat to keep it moist for you when you teach. If you can sip tea when you teach try a throat coating variety. It will help coat your throat and keep vocal chords moist. Some singers use that and a refreshing herbal tea mixed together. The tea will be more beneficial than candy or lozenges.
  5. The one thing my rheumatologist believes in is testing - he believes in checking on things and making sure that I am closely monitored so that if anything does change or start to develop it can be dealt with in the earliest stages. That is probably the best approach I have found. I left another doctor because he was too laid back. He tested only once every 2 years. I was concerned that things could go awry and they would be way too advanced before he would have gotten a grip on the situation. So, I think that the "watchful waiting" approach is best if it means that you get tested regularly and all changes are noted and followed. If those changes are indicative of a problem that should be medicated or treated in some other way, then obviously the doctor must step in and no longer just watch. But if your doctor is not getting baselines then I think you need to see a specialist who will at least do a battery of tests to be able to establish where you are right now. Then you know where you are now and what tests in the future will be using as a comparison. Lung functions do have a normal, but if you test a little out of range now but not much and then test a little more out of range you are establishing a progression. Both figures may not be that far out of range, but you may be showing that your lungs are starting a pattern that is indicative of a problem. If there is no test now but only one in a year that pattern will not be clear for another two years. It is something like that they can catch earlier if you test early. It could be insignificant or it could be important, but it is up to the pulmonologist and the more info that you provide and the earlier, the better off you may be. Good luck. We may not be able to cure this disease, but the sooner you treat problems, the better.
  6. Hi Ann, I have not posted in a while, but reading your post made me feel like you just must not know where the next hit is coming from! It is almost like a bad sitcom plot! You have certainly had more than your share. But I must say that I like your style, asking for stuff to make you laugh! I have lots of movie recommendations. As for books - I read things that are rarely humorous so I cannot offer suggestions. I do have lots of movies to recommend. So here they are: For oldies: Marx brothers movies - the stateroom scene on the cruise is a classic and all those horrible things they did to Margaret Dumont were hysterical. My Favorite Year with Peter O'Toole as a drunk and fading actor was very funny Shakespeare in Love -Romantic and Funny Austin Powers - the first one, the others lose it Blazing Saddles and some of the other Mel Brooks movies depending on how scatological your sense of humor Clueless - it is really Emma California style but cute and winsome Dirty Dancing - not funny, but fun to watch and the dancing makes you smile Fish Called Wanda Full Monty Grease Princess Bride South Park Movie - again depending on your taste, but it was funny any Disney animated movie is cute and Happy Feet was precious. There are also some that are fun to watch, not necessarily funny like Lord of the Rings, any movie based on a show like South Pacific, etc. They will keep you interested and can be upbeat and fun. I wish you a speedy recovery and hope that since you have had your share that you all get oly good karma from now on!
  7. Thank you all for your responses. I do have very strong esoph. spasms and that is a very big part of the problem. I am medicated for them 24/7. With all of the meds that I take for both reflux and the spasms I am still in great discomfort. I also have a hiatial hernia. I am just chock full of goodies. Further down on my trip down intestinal lane I have gastro paresis. The whole system is working to continually hurt, contract erratically and cause pain and discomfort. That was my basis for asking for suggestions. I do try to eat small meals, I do sleep with my head raised, take lots of meds and have not found a food (including water) that does not trigger me. I have decided food is the enemy. I guess until there is a way to install a new intestinal tract in me that there is nothing new as yet. You all had very kind suggestions and it only reinforced the idea that you are all very kind and willing to help. Now medicine needs to catch up and really discover a cure for all of us. Thank you all.
  8. Ok so I take the standard stuff and even some not so standard stuff- the nexium, levsin, procardia and anti nausea meds. I have had botox injected into the sphincter between the stomach and small intestine and still I have reflux and chest pain ad the gastro paresis did not seem to either go away or make much of a difference. No one here is a doctor and no one is expected to diagnose any new problem, but is anyone doing anything else for severe reflux beside taking meds and eating small meals? Am I not doing something behaviorally that I should try? Is there a med that you suggest I ask my doctor about. I did ask him about Acifex and I have had no success with Prilosec and its other brothers. Am I missing something? Is there something that I am not seeing? Your ideas and advice would be very appreciated.
  9. Weight gain! yes! The less I eat the more I gain! I can skip eating or eat it does not seem to matter. It is not if I gain - it is how much! I try to exercise or I just think about doing it but between fibro and scler and all the meds for reflux I am way to tired to actually do it. I will not use that OTC drug to lose weight - I do not want to add another drug to my already unbelievably large number of drugs and I do not want to have an interaction reaction. It is not worth it. So, what do I do? I figure I hate the weight and I try but when all else fails - there are peanut M&Ms.
  10. Hi JJ I just had Reclast and my doctor and my sister the doctor both preferred the Reclast as they believe that it is more effective for building bone in both hip and spine. I will not know for another year when I get the DEXA scan. I hope that they are right because the idea of one infusion for 15-20 minutes per year instead of one a month sounds fabulous to me! I did not have much of a reaction either so if it does its job it is a great success! Now I am waiting to see what my insurance company does because so far it is rejecting payment as an experimental procedure. Let the games begin!
  11. No one knows why scler develops or what effect pregnancy has on the disease. Your doctor did not advise you against getting pregnant. The next step would be to consult with your OB/GYN or to get an appointment with a high risk OB/GYN and speak with them and see if they foresee any problems with a pregnancy under your particular circumstances. If none of the doctors. say that a pregnancy would be dangerous for either you or your child then go for it! You want the child and if the consensus of the doctors is that you will be ok then why not? I would read as much as I can find about pregnancy with your disease and what you can expect. I would also take very good care of myself and eat well, rest and do everything you need to do under normal conditions to ensure a healthy pregnancy. Having a child is a wonderful experience and we have a limited window in which we can have them. Once menopause hits you are out of business, so find out if all the doctors are on board and go ahead with your plan. A child is forever, pregnancy is for 9 months. If your body can take it and you want to do it, good luck! I hope you have a joyous, easy time!
  12. Be persistent and make sure that you take someone with you to take notes so that you stay on point and completely describe all your symptoms and get all the answers you need. The person who comes with you can note the answers and help keep you focused. Sometimes we get so caught up in all the information we forget some of it the moment we walk out of the office It is too hard to write and listen at the same time. Good luck and feel better!
  13. Rainbow, No one knows how much time they have - you can be perfectly healthy and get killed crossing the street! I am sure you have heard that one. When it is your time it is your time. Enjoy the time you have and don't stress because that is not good for any of us- no matter how healthy you are we all react negatively to that! Doctors are only practicing, they do not have crystal balls that can help them see into the future. They can and often are wrong. The choice then is ours. We can curl up into little angry balls of pain and anger or just live each day as fully as we can. It is a shock when we hear our diagnosis - or lack there of and just deal with the symptoms and continuing pains and discomforts. This stuff does not go away. In your case it may not even exist! You may have absolutely nothing to even be concerned about! But if you do, join the rest of us. We can try to enjoy each day and live honestly and with integrity and principles so that we are proud of ourselves whether we are ill or not. At the end of each day we can reflect and say that we did not do anything that we truly regret. If we do that the time that we do have is lived well. No one can ask for more than that. We all have our form of this awful disease. The common thread is that we "spend" our humanity in a way that makes us proud of our time here. We are not perfect and we cannot expect to be more perfect than those without disease. But having this disease often makes us more aware of the value of time, connections to loved ones and the unimportance of material things, petty disagreements and other insignificant things that those who have no disease have time and energy to quibble over. It is not that we are better people, it is that we have less energy and patience. We have a more narrow focus and those things we do care about are more real - pain, disease, getting food on the table, can I dress myself today, can I get to work today, more mundane yet more real than whether my shoes are Prada or Payless. I have gone on, but this disease is not the end of your world or life. I have been diagnosed for 10 years and if you saw me you would not know. I work a few days a week, go out and dine out several evenings a week. I am starting to slow down because my symptoms which are internal are starting to make it difficult for me, but I am also menopausal so the combination of several autoimmune diseases and menopause is a whopper. I also have high maintenance children. I am frequently there for them. My doctors do not feel that my lifespan will be appreciably shorter as a result of my disease. I probably had the disease in my late 20's or early 30's but did not even bother getting diagnosed until my kids were old enough for me to start focusing on me. It may have been set off by my first pregnancy - age 29. Do not let your age frighten you. I wish you a long healthy life. You may very well not have any disease at all. If you do not have any symptons why did your doctor test you? Sometimes people test positive and have no disease and nothing turns up. Talk to your doctor. Calm your fears and don't stress.
  14. Celia, The only thing I want to add, besides the BRAT diet is to make sure you are maintaining your electrolytes. You need more than water if you are going and going and going........ We fed our babies Pedialyte when they were babies and had the runs a lot. There are other things on the market for adults to replace things you need. Be careful to make sure that you hare not just replacing water and losing other important minerals and other things. Good luck and feel better.
  15. Mother's instincts are the best indicator of problems and they can also be wrong. I would get the test so you can know for sure with what you are dealing. If it is nothing - no more nights of worry. If it is something you have caught it early enough to get the very best treatment and can forestall many complications by early treatment. It is a win-win. Good luck!
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