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Hailee

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About Hailee

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    Bronze Member
  1. Scleroderma - Ruining My Life!

    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 think outside of the box as they say. Perhaps there is a different path that you can travel that will provide you with what you need. I can't help thinking about a story I read about a woman with dyslexia who became a successful writer. She had been declined so many times and was told that what she wrote was trash and yet she persisted. I wish I could remember her name. Often times we hear of people's struggles and their ability to overcome. The human spirit is truly amazing. Seek out as much good counsel as you can. Unfortunately, many times, those whom we expect to be most supportive (friends and family members) often fall short and let us down. It is hard for us to reconcile the effect it has on us. Our whole belief system can be shattered. Take time to think in new ways. Answers may be there for you that you had never thought of before. Blessings, Hailee
  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 am so glad to hear that your son is ok. Blessings, Hailee
  3. Sad News.

    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. Signs Of Progression Getting Me Down

    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 and pain. Imagine one's head being held under water or being severly sick or pained in any way and someone else saying, "Keep your chin up" or "You've got to keep a positive attitude." It really depends on how much we are suffering. I know that when I broke my leg, it wasn't a big deal. It was an inconvenience--that's all. I could laugh about it. But for a disease that affects every body system, it is very different. I can't list it all in a small post, but it has taken away even my ability to walk around, sleep, and I have had heart problems, it beating as much as 160 per minute. What I would suggest is to concentrate as much as you can away from whatever you are experiencing. This can be extremelly difficult. I know that for a long time I was suffering so much I couldn't even hold onto a book let alone read one. Yet now I am able to use my hands again and I am so am thankful for that. I have even started playing the guitar a little bit again. If you are able to laugh, then laugh and find as much comedy as you can. But don't feel that you have to be so strong. Do what you can do; you can't do more than that. I often try and think about what my mother use to say when she was alive. "That the human body has amazing healing ability." Well, I honestly have been through times when I thought that I was very close to the end. One foot in the grave and the other on a banana peel. There is no sense to be made from it. We cannot fathom why we are sick or why we may experience a measure of healing. I honestly hope that although it really is a cliche thing to say, we may be able to keep hope in the face of all adversity. Blessings, Hailee
  5. Vomiting Blood

    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. How Many Had Problems With Pregnancy?

    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 alone. And when my time comes, I just hope that I can have made enough of a difference--one more voice--crying out to doctors--when patients come to you, listen--it's not an imaginary illness. So yes Barefut, I have had problems with all of my children being born early. With my son in fact, he may have had a twin because I had lost a large piece of tissue/ clot which the doctor thought was a placenta and that I wasn't pregnant anymore. It turned out I still was. My son is a big healthy young man now. He lives in Calgary and is taking electrical engineering. Today is actually his birthday; he turns 21. My second daughter is 19, lives at the college in Red Deer and she is taking a Bachelor of Arts with English as the major. My youngest is 15 and is still in high school. I know how you feel about finding things in common. I feel the same way. Blessings, Hailee
  7. Irregular Heartbeat

    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 on my thyroid has been cast off. It's there but the biopsy they said was non-diagnostic. Sometimes I get severe pain in the centre of my chest now and I just clench my teeth bend over and try and breath. There is nothing else I can do. I've been through the medical system and I'm not being heard. I hope you have a good doctor who will properly address your problems. Don't let things go on. Make sure that you feel comfortable with the care you are getting and that things aren't passed over. Blessings, Hailee
  8. Shortness Of Breath

    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 see a specialist if it continues. I know that it is not easy for you watching your husband suffer. Our hearts are with you. Blessings, Hailee
  9. Steamed From Dr Comments

    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 regarding a review of a book called "Travels with the Wolf". It is about a woman struggling with doctors and the medical system and her experiences with Lupus. I recently purchased the book and have begun reading it. I keep asking myself. How could it be? It's bad enough that I have been going through what I would say is some kind of crazy fate where my records were discounted and the doctors that I've had have not listened--even ignoring the fact that I had a seizure and high ANA. How...how could someone else, so far away and even with access to a large city of doctors, have went through the same kind of rubbish? A different place, a different time--but the same kind of "sweeping it under the rug". Melissa, the author, was told by a neurologist that she was having pseudo-seizures! Whirlway, I completely understand your frustration. We are not doctors, but many of us know that age has nothing to do with Lupus. We ask ourselves: How could a medical professional who specializes in a disease like Lupus, say something like that? As many questions as there may be that are unanswered regarding autoimmune diseases, there remains hope for answers. However, I can't fathom a reason for specialists who know better but say things that are downright wrong. Blessings, Hailee
  10. Hello Everyone,im New Here

    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 your doctor. APS is also known as Hughes syndrome named after the doctor who recognized and defined the syndrome. Blessings, Hailee
  11. Lisa Bulman Has Been Promoted!

    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. Systemic Scleroderma Sine Scleroderma

    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. Blessings, Hailee
  13. Introducing Myself

    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 sitting business. Animals are a special gift. I have two coordinating cats as I call them--tabbies--named Merlin and Merry. When I was still healthy and mobile living a normal life, my kids and I use to take them on their leashes(little harness kind) and walk them down the street. They walked just like dogs and many people were suprised to see that cats would walk on a leash. Believe it or not, I have my one kitty, Merry, sitting next to me right now in a baby bouncer. Yes, a baby bouncer. I bought it several years ago from a garage sale. It is a little joke of mine, when Merlin gets in it to say: "Don't worry Merlin I won't tell the big tom cats outside that you have a baby bouncer!" Anyways Linda, I know that pets are such a joy so I hope that I can share a few stories with you along the way. Blessings, Hailee
  14. Feeling Faint...

    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. Accurate Vagueness

    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 private organizations to find a cure for scleroderma. To read more on this pending legislation (this may have already been passed) go to: http://olpa.od.nih.gov/legislation/107/pen...scleroderma.asp I think that the description here is profoundly accurate in its vagueness, as if that makes any sense. It describes scleroderma as being a symptom of a "group" of diseases. - Though it is often referred to as if it were a single disease, scleroderma is really a symptom of a group of diseases that involve the abnormal growth of connective tissue, which supports the skin and internal organs. It is sometimes used as an umbrella term for these disorders. The very fact that scleroderma can't be nailed or pinned down to one universal theme beyond hard skin and even that is under scrutiny with sine scleroderma identifies it as as not just one but many monsters. Its very varied properties that change like a chameleon even within the individual make its wholeness as a single disease seem impossible to classify. It is more likely that there is much more to scleroderma than previously thought. Personally, I wonder: Since scleroderma can be limited to just the skin and not progress to the organs, doesn't it make sense that the reverse could hold true? Are there more people than previously thought who like me have at one point been given the diagnosis of the ambiguous Mixed Connective Tissue Disease? How many people are suffering but have no good proof of their illness beyond the nucleolar ANA that is much too high to be normal and Raynaud's and any number of symptoms that aren't explainable? According to Professor J.C.W. Edwards, Professor in Connective Tissue Medicine at the University College in London, it's not uncommon for rheumatic illnesses to exist without a well defined name. - Perhaps the most important fact is that antibodies can cause problems without causing any true inflammation. There may be no swelling, even if there is pain and fatigue, and the ESR test may be normal. Professor Edwards has a lot to say about what he calls Borderline Rheumatic Illness and explains how we now know that it is common to suffer from an illness which cannot be given a definite name. Professor Edwards' article is listed on the ISN's Difficult Diagnosis page. Albert Einstein said: "If you can't explain it simply, you don't understand it well enough." With terms like Umbrella, CREST, Mixed, Undifferentiated, Latent Lupus, Sjogren's Syndrome and more, it's easy to see that Einstein was right. Blessings, Hailee
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