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A MyLupusTeam Member asked a question 💭
Sandpoint, ID

It seems like I'm on a rollercoaster these last 3 months since my diagnosis. I feel positive one day and in the pits the next. I don't feel like I know my body anymore. I don't know what to expect. I have heard it takes about a year to become a little more stable: is that correct?

December 29, 2014
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A MyLupusTeam Member

It takes time and patience. I wish I was able to give you a time frame to look forward to but I can't. Unfortunately many do not get their medicines adjusted enough to be comfortable right away. That's why it's good to keep track of symptoms so your rheum can know which meds to tweak,reduce,or increase to increase your comfortability.
At least In my experience.. Im as comfortable as I can be.
It's normal to have good and bad days and it sucks that you don't know what it will be like.
You know your body but you will know it even better! More than you've ever known it.. You'll have symptoms and immediately know why you feel the way the you do . Or at least what it could be(of course keep track of symptoms and have constant communication with your doctor..ESPECIALLY if something scares you.)
I've had lupus for 3 years (4 In February) and I still get scared ..
Take your medicine everyday, take care of yourself, find multiple ways to relax, and LISTEN TO YOUR BODY.
I'm only 19 and I still adjust sometimes. Adjust to new meds.. Going to school.. Sitting out some activities but it's ok. I guess that's my adjustment. Stick with people who support you. Find your remedies.. Tea.. Reading.. Massages..watching movies under a blanket.. Heating pads.. Cold compresses.. Whatever it is! Find what works for you.
Health comes first!
Hope that helps.

December 29, 2014
A MyLupusTeam Member

In my experience, my own body has been my best teacher. I had to learn which activities effected me in a negative manner. I also had to learn that some actions can be enjoyed in moderation. I'll admit that that from time to time, when I have a good day, I have overdone it. I've done this knowing that the next day would be awful. I don't recommend that for everyone. But life is a game of carefully chosen tradeoffs. Sometimes it's worth going all out even knowing your next day will be awful. Some days it is not worth it. I guess I know I'm going to have good days and bad. I usually try to maintain a balance as best as I can. But sometimes you have to pull out all of the stops and go for the gusto. This probably didn't help with your question. In short you'll never get lupus figured out until you die. The key is to enjoy the ride as much as possible.

December 30, 2014
A MyLupusTeam Member

It takes a long time to get use to living with Lupus. I was diagnosed 14 years ago and still struggle day to day with it. Unfortunately, you never know what the day will bring.
I can say that it does get easier to deal with the illness and symptoms over time. I have learned that if I pay attention to how I feel, what I eat (healthy and non-processed foods)and how I manage my stress levels, the better I can manage my flairs ups and joint pain. I have learned to slow down and take it easy on the days I struggle with symptoms and enjoy the days that are good.
You have to learn to take the day as it is, good or bad, as we never know if we will be here the day after that.

January 14, 2015
A MyLupusTeam Member

It was three years ago when I was first diagnosed. It is still difficult for me to figure out what is too much to do, if I do too much, I will be in pain and exhausted for 2 to 3.I am lonely getting over the guilt of not being able to do all that I want to and need to. My family and friends have help a lot. But, there are also times when they forget that I am sick. Because you can't see paying or fatigue. I agree that keeping a calendar events and how you feel is a good idea. Also, if you feel you are not getting better, you have to be your own health advocate. I foundI had to change doctors and now I am getting much better treatment. Take it one day at a time and sometimes it is one hour at a time.

January 3, 2015
A MyLupusTeam Member

Keep a journal that has what you eat, how much you sleep, activities that day and more importantly, how you felt that day. It will help the doctors know what are you triggers and how to adjust your medications. Some days will be a blur so the more information you have for your doctor, the more it will help.

December 30, 2014

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