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Thread: What is your "new normal"?

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    Default What is your "new normal"?

    I keep reading people saying that their life will never be the same again, that things have never gone back to "normal" once they've been diganosed, they'll never be the same person again, etc. I find that to be the scariest thing.

    Could anyone be a little more specific about what this has meant to you?

    Does "life will never be the same again" mean being in a wheelchair and having to quit your job and being in the hospital a lot and having to have your children sent away from you a lot because you're unable to take care of them?

    Or just that you have to take a lot of meds and be very careful in the sun and take a nap every day?

    Or something else?

    I guess what I'm asking is, what changes have you had to make in your life since being diagnosed, and do you have any tips on coping with them?

    Thanks
    Jenny

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    For Me, life never being the same again means:
    * I can no longer run 4 miles/day.....so, instead I swim laps when the weather permits and I do Pilates when it does not permit.
    * I can no longer sit out in the sun and enjoy the rays....I have to use sunscreen as body lotion and still keep myself covered up
    * I can no longer run around from sun up to sun down...now I have to schedule chores and activities and take rest periods and/or naps during the day.
    * I can no longer hold a full-time job....so now, I work for myself and from my home writing grants for non-profit and faith-based organizations.
    * I can no longer jump out of bed and be immediately ready to face my day....Now, I have to get up slowly, take a handful of pills, allow my joints and muscles to ease out of their stiffness and pain and then slowly and methodically PLAN my day!

    I could go on, but I think you pretty much get the picture. Life never being the same essentially means that we have had to make lifestyle changes in order to manage our disease. But, it does not mean that we can no longer live meaningful lives!

    Peace and Blessings
    Saysusie

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    Hi Redhead,

    I just wanted to say I just got diagnosed a few months ago and am happy you asked that question. I likewise kept reading these stories and posts and wondering what to think about normalcy now and what that used to feel like and what they will feel like now.

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    Hi thanks to papillon and redhead, I too wanted to know what changes to expect. Thanks saysusie for your answer!

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    I don't really know many people outside of this board with lupus but from what I've learned on this board it sounds like lupus really affects everyone differently. There are definitely similarities but a lot of it seems to depend on how severe your particular case is.

    Maybe because I was always kind of a couch potato homebody to begin with, but lupus really hasn't changed my life in an extreme way. The main difference is that I take a lot of medicine and I get tired a lot more easily. Sometimes when I am in stores with bright fluorescent lights I feel overheated, sick and dizzy, but I am usually okay in the sun which is good since I live in Southern California. Another difference is I have gotten really used to having my blood drawn and seeing/keeping in touch with my doctors all the time.

    Sometimes I think I should change my lifestyle a little more than I have since I still do things that can make my lupus flare up if I'm not careful and overdo it (e.g. I still stay up late a lot and don't get enough rest, go out and party late with my friends from time to time, drink more than I should at times, especially now that I am studying abroad in Paris...) but I guess I feel like I am supposedly still young and I do limit myself a lot, so maybe I've given up enough?

    Another thing is that traveling wipes me out in a way it never did before...when I flew through Heathrow to Paris I was so exhausted by standing in the long security lines with my luggage that I had to request wheelchair service at Charles de Gaulle.

    So I don't know if this helps at all, but at least for me I still have some semblance of the same "normal" I had before...it's mainly having to be a lot more conscious of my limits and being careful not to reach them.

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    Hi, Jenny! It's important to understand a couple of things about lupus - first, it affects every single person differently - because something happens to one person, it doesn't mean it's going to happen to you. Second, the lupus experiences you will hear about in support groups such as this are not necessarily a "representative sample" of people with lupus, to use a statistical term. Many people with lupus have a milder form of the disease, and will lead a mostly "normal" life - you've probably known people with lupus before and just never knew it. So those of us who choose to share our experiences in a support group are not always "typical" lupus patients. And some of us have other medical conditions, such as a second autoimmune disorder, or a condition like fibromyalgia, that complicate the lupus.

    So, normal for me means taking medicine every day, having blood drawn every month, and going to the hospital (outpatient cancer center) every month for IV cytoxan and IV steroids. It also means wearing a lot of sunscreen, which was never anything I worried about before, and having to follow a different diet. I'm still able to enjoy many of the same foods - I just have to fix them in a different way. I still work at the same firm where I've been for years - only now I work in a different department, bill fewer hours, and work from home a lot more. I have children, and I'm still just as active in their lives - the major difference is I don't go to the outdoor sports practices or daytime games. Fortunately they are leaning toward baseball instead of football, and orchestra instead of band, so next year most of their extra-curricular activities will be indoor. I have a very large family in the area, so I never have to worry about back-up child care if I were to get sick. I used to love travelling, now it's something I dread because it tires me so much - same for shopping. I now look for stores that deliver, and do a lot of shopping online. I also have post-it notes everywhere to remind me of things, because my memory isn't a hundred percent reliable any more. We moved from a house that I loved to a smaller one that was easier for me to manage and for us to afford, especially with less income coming in.

    Is it a different life than the one I expected? Yes, of course. But it's still a good life, and my blessings far outweigh anything else. And it's definitely made me a stronger person. I've learned how to cope much more effectively with pain and frustration, and everyday, petty annoyances don't seem nearly as important as they did.

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    hello,
    so can a mild case off lupus turn into a severe case of lupus.Like if you have discoid lupus can it turn to SLE.


    shane

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    My new normal is that I can't wear an underwired bra anymore because it hurts by ribs. That's more or less it on medication. Not taken a day off work yet (full time junior doctor). Don't assume it's gonna be bad, it may well be fine.

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    My new normal took time to get to. Its been about 4 years and the past two have been much better. Its alot easier once the mental stuff and fear settled down. My husband always says "be easy on yourself" and that is true. Its a tough road to travel but lots of people have tough roads that are different but equally hard so once I accepted the changes my mental space wasn't completely preoccupied with it like the beginning. Try to keep having fun.
    Also - keep hoping. Lupus is tough to treat but not impossible and lots of people find a good combo of either meds/diets natural remedies that make things much more tolerable. It can take awhile but eventually you will find a good formula.
    all the best
    Karen

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    Utternutter;
    The problem with Lupus is that it changes. It is not the same for any two persons and it can change within each of us! Unfortunately, yes...Discoidal CAN evolve into Systemic Lupus. Discoid lupus does not generally involve the internal organs of the body. However, approximately 10 percent of patients with Discoid lupus can evolve into the systemic form of the disease.
    A mild case of Lupus can also develop into a severe case of Lupus. However, it is generally held that, if you have a mild case of Lupus and you are taking your medications, doing everything you should do to avoid a flare, making appropriate lifestyle changes, following your doctor's instructions and taking care of yourself, you may not develop a severe case of Lupus.

    Peace and Blessings
    Saysusie

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