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More tips for newly diagnosed lupus patients, Part 2: Taking care of yourself
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Christine Miserandino posted:
Previously, I shared some of my top tips for people who have recently been diagnosed with lupus. But there's more. Below are some tips for taking good care of your mind and body as you move forward after being diagnosed with lupus.

1. Give yourself time to adjust. It is OK to be sad, or to mourn your past life without the disease. You may need to make small changes in your life to help you live well with lupus. Take baby steps, listen to your body, and do whatever it takes to make your life easier. And if you need help, ask for it!
2. Reach out to other lupus patients and make friends. Remember that you are never alone. Meeting other patients in person or online is a great way to feel less isolated and to "network" for lupus. This might sound silly. But just like anything else in life, you can benefit from getting advice or tips from people who have been living with lupus for years. When you want to do anything well, it is often about who you know. So contact your local lupus organization for meetings or services that might take place in your area, or go online. Many services are free or low in cost. Join WebMD's message boards to ask questions. It is important to note that you should not start any new treatment, or make any adjustments in your care without your doctor's knowledge.
3. Take care of yourself. Many times when people receive new diagnoses, they fail to keep up with other important needs. It is so important to continue seeing your other health care providers after your lupus diagnosis, e.g. your dentist, ophthalmologist, OB-Gyn, etc. Not only is it important to keep your whole body healthy, but these doctors might be helpful in your life with lupus, noticing symptoms that you might not have seen yourself. Now is not the time to let these things go. Remember to continue eating right, taking your medicine regularly, and getting lots of sleep.
4. Relax. You are already taking the first step in being your own advocate by just being here and reading this post. Keep reading, keep learning, and stay positive. Attitude is everything, and can really make a difference in your care and the outlook of your life with lupus.
5. Learn to laugh. We all have our "lupus laughs" and funny stories. Sometimes humor will be the most important tool in your arsenal. If you don't remember something because of lupus fog and forgetfulness, try not to let it upset you or drive you crazy. Some of the things you will go through would be great material for a sitcom. I personally have some great ER stories where I was the most popular patient with the medical students because they got to learn about lupus. I know there will be times that are hard. But if you are able to find the humor in certain situations, your life with lupus can be better, and not just for you but for those around you. After all, they say laughter is the best medicine!

These are the things I wish someone had told me when I was first diagnosed with lupus. What do you wish you'd known right after being diagnosed?
- Christine Miserandino
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lankfoj responded:
It was such a relief to me to finally have a diagnosis. I had searched for 2 years and many Drs. My mother had a friend who had died with Lupus and she sobbed and sobbed when I told her. I do wish I had been told it was ok to be depressed. I went through every stage of grief and there didn't seem to be anybody there for me. But, I read everything I could get my hands on and that really helped the most. When something new comes out, I want to try it.
 
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luna61 responded:
I was recently diagnosed February 2011 and I was so tired of hearing from the doctors well it might be lupus. I got to thinking who's the doctor that I am paying to tell me I might have lupus, well I so tired going to different test after test it is so fustrating. When I went for a kidney biospy that's when I was told right way you have LUPUS. Now I am at the stage of chemo treatments for my Lupus that is attacking my kidney. I have one more treatment out of the six treatment to do and I feel I am almost at the end of the tunnel. I ask myself daily WHAT COULD I HAVE DONE TO PREVENT FROM ME GETTING LUPUS?? WHY ME?? DID I STRESS MYSELF FROM WORRIES WITH MY FAMILY THAT IS WHY I GOT LUPUS?? I still have so many unanswered questions that I myself read whatever material I can possibly get myself more informed with this disease.
 
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Christine Miserandino replied to lankfoj's response:
I remember when I was first diagnosed, I was angry, but yes- I was kind of relieved because finally I had a name for what was going on in my body! I was actually happy that now I felt like I wasn't crazy! I also was happy to finally have an answer for when everyone was asking me what was going on. Even if people didn't know what lupus was, at least it was an answer! I hated having to say I don't know. I think once you have an answer there is a sense of relief but also for me having a diagnosis gave my illness, and my feelings a sense of validity.

Until Next time...

Love and Spoons ,
Christine
 
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Kat_bet replied to Christine Miserandino's response:
Until I found this community, I didn't realize how important it was to share with others who really know what it's like. I've come to understand my feelings so much more. I never looked too closely at what I lost from this illness before.

I recently had to stop working (I was an elementary school teacher), and I did feel that deeply. I still cry from it. But by l never realized some of my depression was coming from other things I gave up - Renaissance Faire, political rallies, leadership roles in teachers union and school committees, mentoring. These things fell away one by one and I just buried the grief - and then wondered why I was depressed! Now I'm letting myself grieve, and actually feel better for it.
 
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Samone82 replied to luna61's response:
When I first learned that I had lupus, I felt the same way. I had to undergo several test and the doctors did not know for sure what I had. Very frustrating. Later I found out that the lupus was attacking my kidneys, and now I am on my 5th chemo therapy treatment. The medicine makes me so sick, my hair has fallen all out, my weight is up and down with water retention. I had all the questions that you have..the why, the how.. I don't have all the answers, but I find peace and understanding in the Lord and remind myself that it could be alot worse. Keep your spirits high, stay close with your family and keep your faith in the Lord.
 
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butterflygirl12 responded:
just got diagnosed with lupus recently feb 2012. i am 22 years old. i got a kidney biopsy on march and when i got the result, they said you have lupus. i was like what is that. when i searched about it, i was sad. right now im on prednisone. but i dont know how to cope or deal with this disease. what can i expect or can you give me any advices.
 
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butterflygirl12 replied to luna61's response:
just got diagnosed with lupus recently feb 2012 and it attacked my kidney too. im on prednisone taking 60mg for 3 months now. ive also asked those questions daily. how are you doing now. how did u cope? do u have any advice for me because i have no clue.
 
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RKBW529 replied to butterflygirl12's response:
I was diagnosed 5 years ago after several years of confusing symptoms. I remember the relief of finally knowing what was wrong with me and realizing I was not imagining all of it. However, with that diagnosis comes questions, concerns, and a range of emotions. One of the most helpful things for me was to educate myself and find support from others. I was blessed to find a local lupus support group in my community. The first time I went to a meeting, I sat in the parking lot in awe looking at the cars and realizing there were other people just like me. It took courage for me to walk into that meeting not knowing what I would find, but I have been so blessed to find supportive, educated, helpful people who have walked alongside me on this journey. Everyone's experience is different, but it can be so very helpful to have others who understand and will share their experiences and knowledge.

I also began reading educational materials from reputable sources. I think it's very important for me to have an understanding of the disease. I cannot control whether or not I have the disease, but I can control how I choose to live with it. For me, being knowledgeable helps me make informed decisions with my doctors.

I recently found this site and I'm so glad I did. This is a great site with helpful information and is a great resource. Websites like this can be such a useful tool to help us connect and support each other.
 
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Lougjohns responded:
I found out I had Lupus Dec. 10th, 2012, I had never heard of it and it was a shock to me. In the mean time I am getting rashes on my hand, face, neck, and arms. It itches real bad, and I want to know if there is some cream or something I can get to stop the itching.


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