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  1. #1
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    Default New here

    Hi everyone. I've been looking at this site ond and off for a little over a year. I haven't joined before now because I thought that would make the reality of my lupus all too real - well it is real, so here I am.

    I got sick about a year and a half ago and went through the run around from different doctors and specialists - many who did not listen. Finally I found a rheumatologist who does listen and I also go to a really good PA when I can't get in to see my specialist.

    I really can't remember what my life was like before I had lupus and I can't remember what it's like to feel "normal". I've told my friends and family that I've had to redefine what a "good day" is. I feel like this disease has robbed me of so many things. I used to be an avid runner and now I have days where I can barely walk. I feel like my kids (3 & 7) are robbed of their mother.

    I have a great husband of 12 years who is very supportive, some really good friends and my mom is nearby. As wonderful as they all are, there is no way they can truly understand what it is like to have this disease. It can be very lonely at times.

    Thanks for reading my ramblings. It's good to be among people who can relate to each other and provide support to each other on this confusing journey.

  2. #2
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    Welcome hippimom2!

    We're practically neighbors! (I'm in northern IL) And everyone here is a neighbor electronically, so you're no longer alone.

    I shadowed sites for a while too, and followed a similar path - spent the first year after diagnosis taking supplements and NOT doing what the doc told me to. Ended up in pain and exhausted.

    I talked with a counselor for a while, she was such a help. Many of us suffer from depression, for some it can be helped with chocolate, and an ear who listens and can guide you through. (yes, I'm a choco-holic) Many of us need an antidepressent to keep our lives on even keel. It is a chemical thing - NOT "crazy" - so if you keep feeling blue, talk to someone. Your doc, your pastor, if your spouse's company has an EAP, call them, or a social worker. But consider it.

    Once I started on plaquenil, things turned around a lot - I now have many days where I take no pain meds at all. But I religiously avoid the sun (hence the moniker) summer and winter. Sunblock year round as well. I'm still able to exercise most days - though I've gone from a fairly intense aerobic and weight routine to a gentler and lighter jaunt. Run? Couldn't do that before! Walking - no longer a 4 - 4.5 mph walker. 3's about it on a good day. And rest? Lots more.

    You know, slowing down has its plusses - I've learned to sit in the shade and look at my flowers, and not stress about the weeds in the garden. Queen Anne's lace is a bit of a pest in my yard. But the butterflies like it, so it gets to stay. Walking slower means I can watch the birds as I go along. And not feel guilty if I stop and just look.

    Your dear children will remember childhood as being with you, and with your love and caring around them. Not the Mom who's off at the marathon, but the one who's on the sidelines with them, pointing out people with funny shoes, or cheering on the winners.

    I'm glad you've joined us, so that we can all journey together -- welcome

  3. #3
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    Thanks for the kind message, hatlady. I'm probably in a bad frame of mind right now because I'm in the middle of a terrible flare up that has been going on for over a week. I do have a wonderful therapist, but only get to see him about once a month because we live in a rural area and I have to drive over an hour to see him. I've tried about 4 of the antidepressants and have had terrible side effects with all of them - My body must be really sensitive to them. I do see my rheumy Monday so hopefully she will be able to provide some relief. I currently take plaquenil, tramadol, and a low dose of amitriptyline. I'm trying to avoid steriods at all costs because of the side effects. It is just a relief to have finally joined this site and to be among people who can relate to each other. Thanks again for your support and kind words.

  4. #4
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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Hi Hippimom2 and welcome to our forum and our family;
    As Hatlady expressed, most of us who suffer with Lupus also suffer from depression. I would like to stress the fact that the depression does not mean that you are crazy..we suffer because of the chemical imbalance in our bodies due to our disease (not just because we have a disease!). Therefore, we suffer from clinical depression. Clinical depression can be very disabling, especially for us because its effects are generally prolonged.
    Clinical Depression may bring on a variety of physical and psychological symptoms: sadness and gloom, spells of crying (often without provocation), insomnia or restless sleep (or sleeping too much), loss of appetite (or eating too much), uneasiness or anxiety, irritability, feelings of guilt or remorse, lowered self-esteem, inability to concentrate, diminished memory and recall, indecisiveness, lack of interest in things formerly enjoyed, fatigue, and a variety of physical symptoms such as headache, palpitations, diminished sexual interest and/or performance, other body aches and pains, indigestion, constipation or diarrhea, etc., etc., etc.!
    Depressive Illness often goes unrecognized in those of us who have other medical illnesses (such as Lupus) because its symptoms are so similar to those Lupus. In SLE, symptoms of Depression are lethargy, loss of energy and interest, insomnia, pain intensification, diminished sexual interest and/or performance, etc., . Quite naturally, our doctors tend to attribute these symptoms to our lupus and, therefore, we are denied needed treatment for the deprssive illness.
    Unfortunately, there is all too common a distorted notion that those with a chronic illness have "reason to feel depressed because they are sick." This belief interferes with the ability to obtain earlier recognition, earlier treatment, and earlier relief of suffering from Clinical Depression. This belief also ignores the fact that Clinical Depression, in the physically ill, generally responds well to standard psychiatric treatments and that when we are treated only for our physical illness, we suffer needlessly from the effects of Clinical Depression.
    Effective treatment requires early diagnosis and early intervention. Fortunately, most episodes of Depressive Illness in people with lupus are short-lived and subside on their own within a few months. Just as some lupus patients can tolerate a lot of pain, some seem to be able to accept and tolerate major symptoms of Depressive Illness without complaint. Depression is very stressful and anxiety producing, which may exacerbate the lupus. Depressive reactions should be treated with the same aggressiveness and persistence that one would use to treat a lupus flare, or any other medical complaint. Naturally, any underlying medical condition that could contribute to the Depression must be identified and controlled.
    Today, effective treatment is available for Depressive Illness and usually consists of Anti-depressant medications, psychotherapy and, most often, a combination of both. The most common Anti-depressant medications are found in four categories; tricyclics, anti-depressants, MAO inhibitors and lithium. The effectiveness of these medications may be increased by using them in combination or by the addition of other medications.
    Also, I have to wholeheartedly agree with Hatlady about the benefits of "SLOWING DOWN". It is crucial, for us, to be good to our bodies and I have found so much more to enjoy now that I have slowed down to enjoy it! Staying physically fit is also very important for strengthening our immune system, but we need not be marathon runners to accomplish that. I enjoy the slow, meditative aspects of yoga and have just recently started Tai Chi. I find that they both help me physically and emotionally and the workouts do increase my heart rate!
    With some changes in your lifestyle and some precautions, I think that you can still be active and involved!!
    I wish you the best of luck and know that YOU ARE NOT ALONE!!!

    Peace and Blessings
    Saysusie

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