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Posts 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 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.





  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.





  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.





  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 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.





  5. 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.






  6. 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.





  7. 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.





  8. 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.





  9. 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.





  10. 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.





  11. 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.





  12. 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.





  13. 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:


    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.



  14. 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 might express it as a burning or stiffness.


    What can be extremely difficult to deal with however is the type of distress and discomfort that pain killers do nothing for--because it's not plain pain.


    For instance, if your glands aren't working properly or if your vascular system is distressed and you can't even tolerate a modest drop in temperature--there is perhaps little or nothing you can do to fix it. If you are struggling with your breathing and can't rest, no pain killer can help. If your central nervous system doesn't work like it should, you can't "mind over matter" it.


    I think it is the most awful thing for one to be suffering in such a way that others can't identify with it. We live in a society where it is thought we have control over pain. Suffering? Take pain killers--strong if need be. But pain killers don't stop problems like GERD. They don't rebuild damaged tissue. They certainly don't ease the emotional pain of being disabled.


    Some problems can be worked around. Strategies can be developed. Useful remedies can be employed. But often the suffering of a dysfunctioning system is too vague and complex. If only it were as simple as: Where does it hurt? And one could say well I've got a bad pain in my foot because I stubbed my toe. Well, that wouldn't be good, but at least the pain would be isolated. When the suffering involves the "whole" body, the dominoe effect that takes place creates a kind of chaos and a cycle is perpetuated.


    I think that people suffering get to be pretty good at keeping things in and remaining stoic. They don't want to be thought of as whiners or complainers. They want to keep a positive frame of mind and that is obviously the right thing to do. But as a sufferer of chronic illness, I think we need more than that. We need every little bit of mental conditioning we can exercise to cope with what can't be relieved--and for that this forum is very good.


    We can share, vent and understand--and say as is our common refrain--"I am not alone."





  15. 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 so that you don't forget.


    Take Care,



  16. 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 be one swift motion while hearing a a hard crack that was loud to me but I don't know how audible it really was. I couldn't move. I don't remember feeling a lot of pain--I guess it was the shock and a lot of adrenaline. I knew I didn't want to try and move my leg.


    The ambulance came and I was taken to the hospital and sure enough I had broken my left leg almost halfway up between the ankle and the knee.


    My brother said it was the best thing I had ever done because he (being a bachelor) was able to come in and be Mr. Mom. He helped a lot. At that time, my youngest was still a tot and so it was quite the experience for Uncle Randy.


    Things can happen so fast--on those dreaded skates or not. I knew a lady who had a terrible fall down the stairs--tripping over shoes left on a landing.


    I hope your wounds heal quickly.


    Take Care,



  17. 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, pondering the vastness, on a little stool, only a foot off the ground, turning pages, imagining more, coping with less, spending time, I heard someone behind me. A young blond woman was requesting a particular book for quitting smoking and declined any further help when it wasn't available.


    The sales clerk floated away and I couldn't help myself. I reached out to the young woman and asked what I already knew. "You want to quit smoking?" I said. "Yes," she smiled.


    Touching her arm in affirmation, I told her--"You already did." At that point, she didn't know what to say and I carried on. "...because you want to--you will." I went on to tell her about my own desire to quit. Years ago...


    I was twenty years old and had been taking a broadcasting course in Vancouver--going into a tiny room, chain smoking and hating it! I told her how I ticked off one day at a time in a quit-smoking pamphlet that spanned seven days. Miraculously, after that, I had never craved a cigarette again!


    The woman told me that she was twenty-one and a dancer. She said that she really did want to quit. This is why you have, I affirmed again...and just to make quitting a little more sweet, I added--"You know, when I first smoked, I think cigarettes were about fifty-two cents a pack. (Canadian) What are they now--ten dollars?


    After quickly hashing over the awfulness of the habit, we said our good-byes. She was smiling as she left without her book. Maybe she didn't really need it. I looked back down. There was Einstein and his moments and even though I was only a foot off the ground, I was thinking of that woman dancing high in the air. I think she'll be dancing for a long time to come.


    Take real good care,



  18. 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. None of us want to be burdens or bring other people down; yet it is so important to be able to voice our pain. It is so hard to remain stoic.


    As far as being fed up with the biopses, I am just so fed up with the medical system in general. It doesn't sound any better in the US than in Canada either.


    Susie, maybe you will be able to do crafts again sometime. What kind of crafts did you use to do? You have the right attitude though--about moving on.


    Last year at this time, I couldn't even hold a telephone! I had lost all neuro-muscular control over my hands and arms. This year I am able to type this out and although I could play guitar a little, I struggle with breathing and just feel distressed like no one could imagine. I just never could have ever known or imagined what this kind of distress would be like before I became so ill.


    So keep up your hope and just know that we all really hear and understand what you are saying.


    Best Wishes


  19. 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 "objective" categories and numbers accurately reflect patient experience."

    Has anyone read "Travels with the Wolf"?

    I just might order it.

    Stay Warm

  20. 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


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