Page 2 of 2 FirstFirst 12
Results 11 to 19 of 19

Thread: Hello everyone i am new to your site :) xx

  1. #11
    Join Date
    Dec 2008
    Location
    UK
    Posts
    3,091
    Blog Entries
    59
    Thanks
    0
    Thanked 94 Times in 83 Posts

    Default hi

    Hi and thanks for my replies andi hope you both are having a good day today. I do think of you even when i am not in here.

    Thank you for your advice. When i first saw my consultant a few weeks ago, i did list all my medical ailments, which he did not read.He said he'll read it later. I did write on there about the heart thing.I mainly get a really really fast deep, deafening heartbeat at night.Or when i eventually fall asleep my heart wakes me up cause i feel i have stopped breathing then havve to take a massive breath.....which then kick starts my asthma.....oh so exciting...so many things to cope with. I was told and fobbed off by my old doctor (who im so sure he thought i was attention seeking) and he said oh its anxiety.NO WAY!!! I know when im anxious and this is NOT anxiety. This same Doctor had me on a high dose of betablocker for a year.I HAVE ASTHMA!! When i moved doctors he went mad and took me off them immediately and ive been on steriods ever since.But am off them now (fingers crossed, 5th day without an asthma attack and severe coughing...ahhhhh heaven).
    So back to the point....i feel intimidated by Doctors now and am too anxious to say about all the many ailments, so i dont remind them when i see them about my heart, cause im scared they'll just say oh its anxiety.BUT after reading your messages, when i see the Consultant in January, whether my bloods come back negative i will tell him.Its every day....or sometimes the heart feels like its missing a beat, but i suppose its not.I have had an ecg and all was fine.......this illness makes you feel 'its all in the mind'' but i know my body........THIS BODY IS NOT MINE''.

    I have a story about a paramedic, but its a bit long and will make it much clearer why im intimidated by medical people. It happened to me last November. When you are ready for this story, let me know and i'll tell you what he said to me.Was so awful, i cried.....i reported him to my GP. It will probably strike a nerve with some of you and how ignorant some medical staff treat people like us....or me any way.

    Love
    Angel xxxxxx

  2. #12
    Join Date
    Dec 2008
    Location
    UK
    Posts
    3,091
    Blog Entries
    59
    Thanks
    0
    Thanked 94 Times in 83 Posts

    Default lol

    I have just realised i was posting to Mountain Dreamer and the other person was myself......sorry i am not mad, just tired lol

  3. #13
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
    Join Date
    Nov 2001
    Location
    Victorville, California
    Posts
    7,787
    Blog Entries
    10
    Thanks
    1,640
    Thanked 944 Times in 597 Posts

    Default

    Angel Oliver;
    You can post your story about the ignorant paramedic whenever you like. But, rest assured, we will all probably recognize the story and will probably have some equally horrifying experiences ourselves :lol: We've all fallen victim to ignorant medical staff and have been the brunt of their cruel and insensitive statements. I am sorry that you had to suffer from such a thing and even sorrier that it has hampered your ability to be aggressive with your doctors.
    So, here is what we are going to do for you here at WHL (amongst other things that we are here to help you with). We are going to help you to become your own best health advocate. We are going to help you to overcome your intimidation of doctors by educating you about Lupus (and other auto-immune diseases, if it turns out that yours is not Lupus) so that you will be able to have informed discussions with your doctors. We are going to help you to learn how to insist that your doctors do what is right for you and that they listen to you and that they believe you. The next time that you take a list of symptoms to a doctor and he says that he will read it later, you will say "No, you are going to read it right now, right here, while we are both here. Then, you and I are going to discuss each item that I've listed here and WE are going to make a decision about what treatment will be prescribed for each item! You are my doctor and that is what you are SUPPOSED TO DO and that is what YOU ARE GOING TO DO. If you can't do that, then send me to a doctor who will!"
    Do not worry about telling others that you've been diagnosed with Lupus. Even if your illness is not Lupus, it is most definitely an auto-immune disorder in the same family with Lupus. So, if you don't have Lupus, it will not mean that you don't have anything. From the symptoms that you've listed, it appears that there is some auto-immune reactions happening in your body. Regardless of which one it might be, there are treatments for all of them (many of which are the same) and treatment should be started very soon.
    Prednisolone is in the same family as Prednisone. It is very important that you never abruptly stop this drug. You must taper off of these drugs or you could have some very serious medical issues due to the abrupt cessaction. The tapering must be done slowly and in increments and under a doctor's guidance.
    Were you also diagnosed with chronic fatigue syndrome along with your myalgic encephalomy? It is not unusual for this diagnoses to be made prior to a patient developing symptoms of Lupus and/or other auto-immune disorders. Also, CFS and Fibromyalgia are overlap illnesses. ME/CFS is now recognized as part of a range of illnesses that have fatigue as a major symptom. ME has very similar characteristics to Lupus. Like Lupus, it is a chronic, inflammatory, primarily neurological disease that is multisystemic, affecting the central nervous system (CNS), immune system and cardiovascular system, the endocrinological system and muscoskeletal system. ME can cause a wide variety of symptoms, including changes in sensory tolerance, visual problems, exertional muscle weakness, difficulties with coordination and speech, severe fatigue, cognitive impairment, problems with balance, subnormal or poor body temperature control and pain. For almost everyone, ME will cause a degree of impaired mobility and disability. The degree of impairment and severity of symptoms depends on the degree of brain injury and organ involvement. All of these descriptions are also true of Lupus, so it is not uncommon for a patient to have both illnesses as overlap.
    It will help you greatly to learn all that you can about ME, CFS, FM, and Lupus. We are here to help you do just that. In so doing, you will be much more able to make decisions about your health and your health care and you will be much more able to proactive with your doctors.

    I wish you the very best, and remember, you are not alone.

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

  4. #14
    Join Date
    Dec 2008
    Location
    UK
    Posts
    3,091
    Blog Entries
    59
    Thanks
    0
    Thanked 94 Times in 83 Posts

    Default hi

    WOW!!! Thank you for caring so much and for all your knowledge and advice, really really appreciated.

    Love Angel.xx

  5. #15
    Join Date
    Dec 2008
    Location
    Atlanta
    Posts
    3,115
    Blog Entries
    1
    Thanks
    27
    Thanked 80 Times in 69 Posts

    Default

    Hi Angel,

    Do not worry about what drs think. It is tough enough worrying about friends and family's understanding and acceptance. You don't need to worry about others.

    In 2003, I was seeing the "best rheumatologist" at a major hospital in Atlanta. He ran test after test, and could not diagnose anything. Thinking that I must be dying if he can't find out what is wrong, I went to the Mayo clinic in Jacksonville Fl. They diagnosed Fibromyalgia. Escatic, I went back to the Dr. with a diagnosis. His response "I don't recognize Fibromyalgia." My response...."then I don't recognize you" and I walked out and began the search for a new rheumy.

    I found a treasure for a new rheumy, and am grateful that the 1st dr. did not want to work with me. Hang in there....don't make their job easy....you are right and they are wrong.



    Good luck,
    Phyllis

    P.S. So far all of my drs. are women, and I have great confidence in each, and each of them and their staff treat me with great compassion and respect. Just a note for what is working for me.

  6. #16
    Join Date
    Dec 2008
    Location
    UK
    Posts
    3,091
    Blog Entries
    59
    Thanks
    0
    Thanked 94 Times in 83 Posts

    Default hi

    Hi,

    Wow, well done you! How i long for the day i can say something like that lol......i chuckled when i read it.Yes you are right...be confident!!! Hopefully with the help of everyone here, one day you'll see confident, assertive words from me, but i suppose it'll take time.

    Thank you for your reply.....gives me hope!!!

    Hope you have had a good day today.

    Love
    Angel.xxxx

  7. #17
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
    Join Date
    Nov 2001
    Location
    Victorville, California
    Posts
    7,787
    Blog Entries
    10
    Thanks
    1,640
    Thanked 944 Times in 597 Posts

    Default

    You are most welcome, Angel Oliver. We are here to help you!

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

  8. #18
    Join Date
    Nov 2008
    Location
    Ohio
    Posts
    48
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Hi Angel & welcome;
    There are wonderful people here. I do not feel so alone when I read everyone's threads and responses.
    I understand what you are saying about the fear of medical personnel. I am so afraid to go the the ER for fear that I will be treated like a drug addicted faker.
    I was diagnosed with Lupus 5 years ago. I am being told I am in remission, but I feel worse with each day that passes. I was even told that it is my brain playing tricks on my body. I have multiple joint pain, swelling to all four extremities, chronic fatigue, numbness and tingling in all extremities, headaches, petit mal seizures and most recently, my brain can't seem to get the message to my legs to move for a few minutes. I was told that the pain may be a side effect of the swelling, but no one knows what is causing the swelling. Liver is fine, kidney is ok (Left one not functioning, but right one is good)
    Hang in there and keep posting. These people are great.
    :B-fly:

  9. #19
    Join Date
    Dec 2008
    Location
    UK
    Posts
    3,091
    Blog Entries
    59
    Thanks
    0
    Thanked 94 Times in 83 Posts

    Default hi

    Oh thanks so much for your lovely welcome. Yes after a few years of people not believing it makes you feel like and think.....maybe it is all in my head.But NO.....WE ARE REALLY SICK PEOPLE. To think there are 'people' out there who think we love to be housebound and just exist and not live.....oh how wrong they are!
    I am glad i have found you all....every day you make me realise.....how wrong THEY are and how real we are.
    I hope you have a lovely day and a fab Christmas...even if you are resting like i will be.

    Love
    Angel.xxx

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •