It’s time for me to start sharing my lupus story. I have SLE, systemic lupus erythematosus, where my entire body is affected by this disease: skin, organs, kidneys (lupus nephritis), central nervous system, blood vessels, joints and muscles, etc.
As part of my lupus treatment, I have been receiving IVIG (Intravenous Immunoglobulin) treatments for seven years now, which involves being attached to an IV for four hours, every other week. I get these IV infusions to manage my lupus symptom of neuropathy.
In addition to having lupus, I have a rare CSF (cerebrospinal fluid) leak in my spinal column, which has driven me through hell and back since 2013. Because CSF leaks are so rare, it has been difficult finding doctors or neurosurgeons who are capable of helping me. In pursuit of treatment for my CSF leak, I have traveled to two other states on eight separate trips, seeking treatments that involved 2 blood patches, 4 fibrin glue injections into my spinal column, and eventually 2 surgeries.
At the end of 2015, I had to stop working and file for disability. My body has reached pain levels that made me wish out loud that I would die. Yet somehow, I found a grain of strength and triumphed through those moments. I have a few more scars and a little, okay a lot, more anxiety. I’m surviving. Together we can thrive.
It’s my 12th year since I’ve been diagnosed with lupus. I’m ready to share with you how I manage, fumble, cry, prevail, get carried and sometimes crawl through life with lupus.
My hope is that you will relate to something I share, or a tidbit of advice will help you, your spirits might lift for a while, and you won’t feel so alone in your disease, as I often have.
Please visit my blog again to view my updates and posts about living with lupus. I promise to share more details about everything I mentioned above. Also, please forgive me if a little times passes without a blog entry, I never know when I will experience a lupus flare.
Please find a way to reach out and share with others what your going through, because you might help someone else in the process, and because you’re worth it.
