When I first received my “Lupus” diagnosis I was terrified by the unknown, albeit tremendously relieved because I didn’t have to go on feeling like I was crazy and the pain I was experiencing was all in my head.
Don’t beat yourself up! Before I was officially diagnosed, I used to pray that the doctors would find something wrong with me.
I DIDN’T WANT TO BE SICK, but I wanted an answer for why I felt sick. When you’re in constant bone crushing pain, suffering severe migraines, unrelenting fatigue and scooping clumps of hair out of the bottom of the shower every morning, you become desperate for answers.
It took me quite some time to work through the guilt I was feeling. When I finally got a grasp on my emotions I was able to accept MY REALITY, and my reality didn’t include punishing myself for being sick.
I believe it’s fair to say that none of us made the choice to be sick. So don’t confuse your desperation for a diagnosis as anything more than what it truly is. Once we can identify our attacker, the sooner we can stand up and fight to not be a victim to our disease.
The doctor that gave me my definitive diagnoses was a specialist in “Lupus,”had written several books about the disease, taught Rheumatology at one of the most prestigious Universities and worked both a private practice as well as at the most affluent hospitals in our area.
Initially the doctor referred to my disorder as a “Mixed Connective Tissue Disease.” Being the patient and not the doctor, this meant very little to me. I had a few friends that had previously been diagnosed with Lupus, however, I had never heard of an “MCTD” before. When I asked for clarification he explained that I had Lupus and possibly other auto immune processes overlapping, and regardless of what we’re calling it, it had to be treated. From that moment on, I began a file on my condition. And I’m so glad I did. What started out as a two page list of symptoms quickly turned into a few hundred page file that I’ve been collecting for the last seven years. That file consists of all my records, doctor visits, hospital stays and anything else that seemed notable in the progression of my disease. It was important for me to play an active role in my health care and by tracking my symptoms and following my blood work I could identify flare triggers and recognize when things had taken a turn for the worse in my condition.
I called my distant cousin, a world renowned nephrologist the moment I receive my diagnosis. In our twenty minute conversation he gave me the best advice anyone could have ever bestowed upon me. “Be your own advocate!” He said. “Make sure you take an active role in your health care. Doctors see thousands of other patients and don’t have the time to dedicate to your case alone. So do yourself a favor, collect all your files, get familiar with what you’re up against, ask questions and always push for the treatment you need, because if you don’t fight for yourself, no one else will.”
I can’t stress enough, how important it is to track your symptoms:
- Jot down the headaches you experience during the day and what alleviates the pain
- Make note of when your fatigue is the worst and what treatments help, if any
- Discuss your sleep habits
- Eating habits
- Your daily level of pain on a scale from 1-10, 10 being the worst pain ever
- Take pictures of the rashes you develop
- Determine if anything brings the swelling down around your joints
- Do you feel like collapsing after physical activity?
- Are you feeling depressed? Or suffer from anxiety?
Unfortunately it can take an infinite amount of time to receive a proper diagnosis, that’s why it’s pertinent that you start a SYMPTOM JOURNAL because most doctors will benefit from knowing your symptom history, in order guide them toward the proper course of treatment.
Whether you choose to go out and buy a new journal, start printing out and filing all your medical records or enter your symptoms into the note section on your phone; regardless of the method you prefer, all that matters is that you WRITE YOUR SYMPTOMS DOWN!!!
You deserve the best health advocate around, and that is you!