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Everything posted by Hailee

  1. Hello Denelle, I just want to say that years ago when I first became very ill, something happened and it went into an apparent remission. I was able to live mostly normally for 16 years. Although I am very sick now, I did have a life. I just want encourage you not to give up hope. Maybe things will remit somewhat. In the meantime, don't try and do too much. Like Sweet said, just take one day at a time. I would like to add that even if you could stay at your job, you may not want to after being treated like that. It's not as though you asked for this. If you can, try and th
  2. Hello Sam, I just wanted to say that I know how relieved you must be to know that your son is ok. Not too long ago in an area outside of Red Deer, a boy and his sister were hit by a train. The boy is 16 and he survived but his sister was killed. I don't know how it happened. They didn't say on the news. But apparently the car had broke right through the crossing which was down at the time. Was he trying to race through? Or perhaps he had loud music on and was distracted? It doesn't matter really. The poor boy must now live with this for the rest of his life. Anyways Sam, I
  3. Hello, I did not know Peg, but I want to express that I understand that pain of loss. Since 1994 I have lost my youngest little girl, my oldest brother and my mother and father. There is nothing that can fill the spaces that they have left behind. Each spirit is so very unique. When we lose someone, it feels like we lose part of ourselves also. May those who knew Peg find strength and peace. Blessings, Hailee
  4. Hello Barefut, There are some circumstances that we can work around and some that we can only work through. I know that because I have dealt with severe neurological problems where I coudn't even control my limbs and had a seizure and convulsions where I had no control over my body, there wasn't anything I could do. If however I think back to when I was still healthy, I would always maintain a positive attitude in the face of minor problems. I always maintained "You have everything when you have your health." The situation isn't so easy however when one is facing serious distress
  5. Hello Michelle, Ditto with everyone else. Go and have this attended to. I know that you would like to have a primary care doctor but don't wait. My thoughts are with you. Blessings, Hailee
  6. Hello Barefut, My first born, my son was born two months early. My second and third children, my two daughters, were each born a month early. My fourth child, my last daughter, was born three months early. She had been doing really well but I lost her to SIDS at the age of ten months. It didn't make any sense she was already starting to pull her self up and walk along the furniture. She was taken swiftly in 1994 and here I am hanging around so long and I often wonder why. I am suffering constantly and can hardly do anything. I just try and let other people know that they are not al
  7. Hello Heddy, So many times, I read people's posts and I am amazed that I have been going through the same kinds of problems. I also have had problems with my heart. I had that same kind of hard pounding for no reason at all. It would beat at 125 per minute just lying down. I also had really severe chest pain in 2004/05. Nothing was done about it even though one of the cardiac markers came back positive. Only now, two years later am I waiting to see a cardiologist. Still, it doesn't solve any problems I've been having with my breathing or neurological problems--even the lump o
  8. Hello Birdman's Wife, I have had shortness of breath that stems from problems in my upper bronchials. It is awful. As others have said, your husband should see the doctor. I hope you are successful at determining the cause. In my case it has been a real struggle. Although the respiratory technologist had said that she noticed problems in the upper airways, the doctor had dismissed it. I know that people can have so many problems in getting the proper help they need. Often doctors don't know and just make guesses as to what they think it could be. Your husband should se
  9. Hello Whirlway, I don't even know where I would begin if I were to recount the bad experiences I have had with doctors. I can harldly even believe the things that I have went through. I don't like it when I read posts where other people are having similar kinds of problems but at least it lets me know that it's not just me with really bad luck. Obviously, from what I have read, there seem to be a lot of doctors out there who are insensitive and are not truly concerned about helping their patients. Many are even rude and careless in what they say. I put up a post awhile back rega
  10. Hello Memeto2, I am so sorry to hear about the problems you are having but the group of people here are all very warm and supportive--so it is good to be here in that sense. I am familiar with something called antiphospholipid syndrome. I myself have tested positive for anticardiolipin antibodies which are a type of phospholipid. Miscarriages, neurological problems, blood clots...all can be associated with APS. It can occur on its own or be secondary to autoimmune diseases like Lupus. If you haven't been tested, you should be. Read up on it and then take your knowledge to yo
  11. Hello Lisa, I want to add my congratulations! Isn't it good to know that all of your hard work has been rewarded. I wish you continued success in your new position. Blessings, Hailee
  12. Hello JJ, I had systemic sclerosis written up in the differential along with Lupus but MCTD was the original diagnosis. My story is posted under difficult diagnosis if you want to know my experience. Everyone is different but it seems that Raynaud's is very common. My hands and feet will sometimes go blue to purplish. There doesn't seem to be a lot of information available about sine scleroderma. Probably a lot of people who have it are not diagnosed because the typical skin involvement isn't there or is minimal. I know that this site has some related links to pub-med.
  13. Hello Linda, I just want to say welcome and let you know that you are not alone in having difficulty with your sleep. I stopped sleeping properly two years ago. I have severe problems with my breathing, chest pain, vascular and neurological problems. I too have raynauds that happens even in a warm room. I never feel that wonderful cozy tired feeling like I used to. The area from the sinuses right down to the diaphragm is a major thoroughfare for the body and this is where I experience so much distress. I cannot experience any comfort at all. I wish you every success with your pet
  14. Hello WestCoast1, It sounds to me that what you describe is consistent with your blood pressure not adjusting properly when you stand up. I had read about a woman with MCTD who was having terrible fainting spells and problems with her blood pressure. She was finally diagnosed with dysautonomia--a condition where autonomic functions aren't working properly. Another possible cause of low blood pressure when standing could be certain drugs. Most definately let your physician know. Blessings, Hailee
  15. The OLPA (Office of Legislative Policy and Analylis) site has the appropriate sub-title under their name: Linking the National Institutes of Health and Congress. This key linking is not only desirable between the NIH and congress but within the scleroderma research community which demands a unified think tank and measures that utilize those resources. Take a look here and see the efforts of some to promote scleroderma research which is more integrated and collaborative. Some of the points brought forward were additional methods for improving disease surveillance and working more closely with
  16. Anyone who has been sick with a bad case of the flu(and we all have) and felt extreme nausea can understand that the awful nausea experienced is terrible suffering but we don't really equate it to pain; it's a different kind of suffering. Likewise, if one were suffocated or drowned, there would be terrible suffering but the word pain doesn't quite fit. Consider that if one feels the type of pain that is most easily understood and identifiable, it could be felt and interpreted in different ways; as being sharp and stabbing or a dull ache or a gnawing cramp or a tight pinching. People migh
  17. Hello Krista, I hope that you can find some answers. Part of the puzzle seems to be neurological problems. You said you have experienced some numbness? I don't know if this could be significant in your case or not but perhaps you could ask to be checked for anticardiolipin or other antiphospholipid antibodies. I have learned that some people have actually been falsely diagnosed with MS when in fact they had these antibodies in there system which were causing a syndrome that also has been linked to neurological problems. When you see your doctor, make sure you write things down s
  18. Oh Heidi, you and I have something in common! When I still had my health, I think it was 1992, I had went roller skating for the first time. I wanted to encourage my girls--"Look how easy it is!" And as I started to feel comfortable with the whole business of gliding along, I decided to try standing on the toe-stops; these were the old-fashioned boot style roller-skates that I was in and didn't have any give whatsoever. It happened so fast! Although I was only standing--not moving in the slightest--I became off balance and twisted. I dropped heavily to the ground in what seemed to
  19. Hello everyone, First of all I should say--for the virtual party--I will bring hot buttery popcorn. Today I went to a bookstore to order a book. Because I can't stand for long, I searched first of all as I always do for one of those step stools on which to sit down, near my chosen shelf of browsing. I came across Einstein in one of the books. He was apparently asked once: What does "The Divine" look like? His reply went something like this. Although we can't see everything, it is in everything and from moment to moment that we experience the great mystery. Sitting there,
  20. Yes Susie, I really do hear you. Everything you said strikes a chord with me--that could be a pun--I had always played guitar. I don't now but not because of the same reason as you having trouble with your hands. I have problems with my vascular, neurological and respiratory systems and can't even walk around and shop. My story is too long and complicated for this forum but I understand your loss! I had always been so very active in everyway. All of us here in this forum(and those outside it dealing with other chronic illnesses) are all trying to live the best way we know how. Non
  21. You may have already come across this in your travels but for those who haven't it may be an interesting read; the review certainly was. Dr. Coulehan recommends this book to physicians and other health proffesionals. He converys the uncomfortable revealing truths that are at the heart of Melissa's book: abandonment and betrayal. He writes: "Melissa encounters numerous doctors who hold the reigns of authority, yet live in a different world. Some fail to listen, others betray and abandon her...Physicians often have trouble empathizing with patients who threaten the comfortable belief that "obj
  22. Sometimes there just are strange things that happen that we can't understand. Then there's also what most of us experience...just those little things that we attribute to coincedence--we are thinking of someone and sure enough--they call. Talk again soon Hailee
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