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Thread: My Story - It's a long one !

  1. #1
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    Smile My Story - It's a long one !

    Hi All,
    I have been reading these posts (and many others) for some time now.
    I thought it was about time I added my ‘my Lupus story’ to the mix.

    I am now 44 years young – although at times I feel like I’m over 70 !
    About 5 years ago, I was a very active, single mother of three fantastic kids. I worked full time in a professional position and my spare time was spent – hiking, camping, swimming, abseiling, doing the kids stuff, doing the house stuff, etc.
    Yep, I had all sorts of weird aches and pains ranging from mild to severe. I was exhausted a lot of the time, and suffered with a variety of ‘odd’ symptoms.
    However, I had 3 children to raise and so I put one foot in front of the other, and kept going.
    I visited many doctors (from the same Medical Centre – they all had access to my full history)
    I underwent many ‘diagnostic’ tests – be it blood, x-ray, ultrasound, urine ….
    All of which returned ‘normal’ and cost me $$$ ….. Which I could ill afford.
    At this point, I thought it was all in my head – yet the pain was very real.

    If the above was not enough to deal with – my violent ex was also stalking my children and I.
    He would threaten us at every opportunity, abuse me via the telephone and make death threats.
    This ex was also facing Police charges for the molestation of my youngest (then 8 years old)
    This was very traumatic and I am sure the stress has contributed to my condition.
    Before he was to go to trial, the ex committed suicide.
    Since then the children and I have been able to get on with our lives – peacefully. However, I have not been free of pain. That was 3 years ago.

    Now ……
    I still feel extremely tired a lot of the time, I have unexplained sore joints; I have not had a regular period in 8 years, and my fingers turn blue and feel numb. I am able to sleep for 16 hours a day, I find it difficult to remember simple things, I suffer dry eyes and on occasion my little toes and hip joints ‘burn’. At times getting out of bed hurts, my ankles/feet are so sore that I cannot walk, I suffer with large/painful cysts on my bikini line, occasionally I have a red skin rash around my neck and I bruise easily, I also get a ‘hive’ type itchy rash after having a shower or swimming. My ‘temperature gauge’ doesn’t work, I overheat and perspire like I’ve fought 10 rounds in a boxing match, at times my body is sore to the gentlest touch, my jaw hurts (making it hard to chew). I have shoulder pain, chest/rib pain, arm/wrist pain, neck pain, lower back pain, knee pain and leg pain.

    The problem lays with not being properly diagnosed. As I live in a small community, I had not been able to see the same doctor for each of my many visits. One visit I would have a sore foot, the next visit I would have sore ribs, the next would be sore shoulders, then sore arms, then breathlessness, then skin issues and so on. However, not one Doctor was privy to ALL of my visits. (Although I attended the same clinic for years and they could have looked up this history on the computer)
    Not one Doctor was looking at the whole picture.
    Each would prescribe an anti inflammatory, a painkiller, give me a few days off work and send me home to rest.
    I am sure that they thought it was all in my head as well – either that or I was looking to feed some prescription painkiller addiction.

    It was about six months ago that another blood test revealed that my ANA was positive – meaning that I had some sort of connective tissue issue.
    Many other tests were to follow, however, so far as I know, all were ok. Apart from an MRI of my chest – it revealed ‘shrapnel’ in my lower chest quadrant (No one has explained this one yet)

    I have been referred to a rheumatologist – whose bedside manner can be likened to a slug!
    He – “hummed and harred’ over the doctors report. Disputing with me, every little detail and yet, he has not ordered tests to prove or disprove the Doctors report.
    He has told me that I do have Fibro Myalgia and Reynaud’s phenomenon. He seems to be reluctant to say ‘Lupus’ – preferring to use the term ‘disease’ instead.
    He has prescribed Plaquinal. He does not to pay much attention to the fact that I am in need of pain management – prescribing paracetamol x 4 per day ! ….. yeah right !
    After my last appointment with him I was in tears of frustration, and so decided to seek a second opinion.

    I took long-term sick leave from work in November 2009. I was on a Social Security Sickness Benefit until March 2010.
    In March, it was becoming very clear that my employer could not hold my job open indefinitely. I needed to decide if I was able to return to work …5 days per week, 8 hours per day. I was not able to guarantee that I could fulfil these hours – therefore, to be fair, I tendered my resignation.
    Unfortunately, the Sickness Benefit only applies to those who have a job to return to and as such, I am now not ‘earning’ a cent! I am in the process of applying for a Disability Pension – this may take some time to come through.

    I hope my story helps other sufferers to – hang in there and take good care of themselves.

    I do have a few questions ….

    Is there anyone out there (Australia) that has dealt with Centrelink for these kind of health issues? Are they going to give me the paperwork/form filling run around?

    I do hope my story was not to tedious.

    Cheers to all
    Julz

  2. #2
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    hi julz,

    first, welcome to whl....your story of searching for decent medical attention is similar to so many of our efforts.

    I am so sorry to hear about the extreme distress that your ex caused you and your children. I can certainly understand where his actions would cause your symptoms to flare up. It is nice to hear that your kids are moving on, thank goodness they have you to walk with them.


    Glad the dr. put you on plaquenil, hopefully you will see some improvements in the near future.

    We have a member, Kim, who lives in australia, hopefully she will be around soon, and can get in touch with you. I don't know where she sees her drs., but i do know that she is very active in seeking good medical attention for her and her daughter.

    How long have you been on the plaquenil? it can take up to several months for it to work at its capacity, so you might need a little more time.

    I also have fibromyalgia, and the pain can stop me in my tracks. Pain pills get me past the moment, but rest is the only thing that gets me back on my feet.

    Please stay in touch, and feel free to ask any questions that you might have.
    Phyllis

    share a smile today

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    Hi Julz. I like the way you spell that.

    First, I'd like to applaud your courage and love for your children to get them and yourself to safety from your ex.

    Shrapnel in your chest? Wow! That is strange. Have you visited a specialist for that?

    You are in good company here Julz. I visited four rheumys before I found the right one. I came to this site, was welcomed in and treated like family, and I met Phyllis who has a wonderful rheumy that became mine also, and my life is improving.

    Good friends/family and good doctors make such a difference!

    Thank you for sharing with us. I look forward to reading more of your posts.

  4. #4
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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Hi Julz;
    Welcome to our family. I am so sorry to hear that you have been suffering for such a long time without any definite diagnosis or at least any concurrence from your doctors. I would like to say that your story is an unfamiliar one, but unfortunately for many of us, your story is very familiar.
    One of the biggest hurdles we have to overcome is that of doctor's listening to us, taking us seriously, running appropriate tests, and prescribing appropriate treatment. Too often, doctors do not want to believe us when we tell them what is going on in our bodies and they do not want to treat the symptoms that are causing us so much grief. It is very unfortunate when our rheumatologists (the doctors who are supposed to know about auto-immune disorders) are the ones who are dismissing us.
    I am glad to hear that your rheumy at least has started you on Plaquenil. But, I cannot understand how he could ignore the fact that you do need pain management. Also, almost every single one of us, with Lupus, also suffers from a co-existing disease, such as Fibromyalgia. The symptoms you describe do sound as if you may be dealing with two, maybe even three co-existing disorders.
    It might be helpful for you to keep a journal of your symptoms and how they affect you. Take this journal with you the next time that you visit your rheumatologist. Insist that he give you the respect and the time to discuss your journal, to work, with you, on what tests should be run and what the tests and their results indicate, and what type of treatment program you should start that would help to alleviate ALL of your symptoms. Do not let him rush you, ignore you or dismmis you. Tell him that you are not leaving his office until he listens to you and answers your questions. You are in pain, you are ill and it is his sworn duty to assist you..that is what you are paying him to do!
    In the meantime, we are here to help you, answer questions, provide you with understanding and support, and to just be here when you need us. I wish you the very best!

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

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