Being diagnosed with lupus can bring about a flurry of emotions. You may feel upset or nervous about what the new diagnosis means for your future. You may be angry at the idea that your life may change. You may even feel happy that after some time of not feeling well, you finally have a name for what was ailing you. Finally, your condition has a name. Each of these emotions is normal, and no reaction is the right one. In fact, you may feel all of these emotions at some time or another.
But beyond your emotional reactions, you may be wondering what your next steps should be. Below are some tips for moving forward after being diagnosed with lupus.
1. Get a second opinion. Before you begin your journey into chronic health care, you want to make sure you are heading down the right path.
I didn’t get a 2nd opinion when I was first diagnosed. My dermatologist originally diagnosed me (I had the butterfly rash across my face, and lesions on my neck and under my breast). After she performed her examination she was “certain” it was Lupus and referred me to a rheumatologist & neurologist who ran additional test and confirmed that I had Lupus. Honestly, that was the best day of my life. It answered a lot of questions and FINALLY I KNEW that what I was experiencing wasn’t my imagination. After getting over the initial shock, I was ready to battle & WIN!!!!!
2. Bring a friend or family member to be an advocate for you. You may need to have some tests done and see many doctors in the beginning. Having someone else there to take notes, ask questions, or just be an emotional support is very important. It is normal to forget a question, or not remember important information after a doctor visit. It is also great to have a supportive person with you who can hold your hand, distract you, make you laugh, or just listen.
I have never had a friend or family member come with me to any of my appointments (well my husband has attended 2 or 3 ). There were times when I wanted “support” and then there were times when I was happy I was there alone. From my experience, I have found that when people don’t understand what is happening they can be very judgmental. Going through the motions and of trying to come to grips with everything- JUDGEMENT WAS THE LAST THING I NEEDED OR WANTED!
3. Start a notebook or a folder for your healthcare. Take notes and ask for copies of your test results. Take time to actually read your tests and learn what they mean, or ask your doctors. Keeping a record now is a great start. It’s always a much bigger job to back track and get records that you may need in the future. These records and notes can be helpful when you’re seeing multiple doctors, dealing with insurance companies, applying for disability, etc.
Yes, yes, yes!!!!! I started experiencing a “brain fog” and I would literally forget what someone told me only minutes previous. It’s imperative that you keep records and minimum keep notes or download one the apps on a smart phone that will store your medical records and or notes for you. I remember an incident when my rheumatologist had prescribed me a medicine that counter acted something the neurologists prescribed me, I ended up with massive migraines and I wanted to die (I was in that much pain). Once I gathered everything out of my cabinets, purse, and night stand, I went back to the doctor, showed them everything I was taking, and they figured out exactly what the culprit was. From that point forward I have kept impeccable notes and I always keep a record of my prescriptions ( dosages, strength, etc).
4. Do your research. After being diagnosed with lupus, you will soon hear all kinds of words that you may not have heard before. Names of medications, secondary diagnoses, and symptoms can be overwhelming and scary. A great way to combat this feeling is to learn as much about lupus as you can and get yourself familiar with the lingo. This will help empower you in conversations with doctors and nurses. When you know what they are talking about you can ask appropriate and necessary questions. WebMD is a great place to start on your quest to educate yourself. There are many articles, posts, and videos on the site that are very informative.
I can’t say this ENOUGH!!!!! DO YOUR OWN RESEARCH!!!!!! I’m often asked for advice relative to Lupus. While I appreciate strangers, family & friends comfort level to ask me for advice ( treatment, & diagnosis), I refrain from giving medical advice. It’s not that I don’t care or I don’t want to share information, I’m NOT A PHYSICAN. Legally I cannot provide medical advice. I’m more than willing to share what has/hasn’t worked for me, but that information should not be used in place of a diagnosis or treatment plan. I have this disclaimer at the end of every post “The information included on this blog is for educational purposes only. It is not intended nor implied to be a substitute for professional medical advice. The reader should always consult his or her health care provider to determine the appropriateness of the information for their own situation or if they have any questions regarding a medical condition or treatment plan.” I encourage all of you to always consult with a physician before starting/stomping any Treatment plan, Nutrition (eating) regime, and Fitness plan. If you are looking for information and or support, outside of speaking with your doctor, I HIGHLY suggest that you become a member of the Lupus Foundation of America Chapter (in your state). The Lupus Foundation of America offers symposiums, teleconference calls, empowering events and the largest support group network.
5. Ask questions!!! Do not be afraid to ask questions, even questions you deem silly or unimportant. If you feel any kind of change in your symptoms, tell your doctor. I cannot stress this enough. You are a partner with your doctor in your healthcare. You need to take an active role. You are the only person who knows your body best, so if something feels off, say so.
You have to be your own advocate and cheerleader in this fight!!!!! No matter how minor the question may seem, ASK IT!!!! Make no assumptions!!!! Make sure that the doctor/nurses are listening and providing you with the approriate answers. You must be active and aggressive in your treatment plan !!!!
Tips Provided by Web MD ( my responses are highlighted in purple)
Until Next Time,
Live ~ Laugh ~ Love
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(¸.·´ (¸.·’ The Lupie Chick ™
Twitter: @lupieeChick & @AuNaturaleDC
The information included on this blog is for educational purposes only. It is not intended nor implied to be a substitute for professional medical advice. The reader should always consult his or her health care provider to determine the appropriateness of the information for their own situation or if they have any questions regarding a medical condition or treatment plan.
Published by The Lupie Chick
I’m a wife, a mother, a grandmother, a sister, a daughter, a friend, a poet, a philanthropist, a member of Sigma Gamma Rho Sorority, member of Order of The Eastern Star, and I have Lupus. I was diagnosed with Lupus in July 2011, after many years of unexplained illnesses, surgeries, and hospital stays.
My Lupus was discovered after a year struggle with a rash on my face that was spreading to my neck and chest. I had begun to also suffer from migraines, fatigue, joint pain (in my ankles and wrist), shortness of breath, and excessive sweating. I knew nothing about Lupus except it was a disease that Toni Braxton suffered from. I initially thought there was a magical pill I could take to get rid of it. I was informed that Lupus has no cure; it’s a disease I will live with for the rest of my life until a cure is discovered. I have dedicated the rest of my life to be a face-IN YOUR FACE- activist for a cure- I'm not hiding it-I'm FIGHTING it!
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