May is Lupus Awareness Month. Did you know 9 out of 10 adults with lupus are women? And the average length of time for a woman to be diagnosed is 6 years?
Unfortunately, my husband falls into the 10% of men who are diagnosed with it.
Lupus, in the beginning, literally took him and me through hell. It didn’t help that he was already dealing with another auto-immune disease called myesthenia gravis which attacked his muscles. Then, lupus came along and attacked his whole body—all his muscles and joints.
He was literally left incapacited and bedridden for almost 2 months.
It was really scary going from doctor-to-doctor with no real explanation for what was happening to him. It took about 5 years for a doctor to finally diagnose him with lupus. He had to deal with excrutiating pain and was given all knds of drugs, and then, drugs for all the side-effects of the drugs. It was a never-ending cycle of drugs and new drugs, until he was up to 17 drugs that he had to take everyday—until he said enough.
Sadly, the lupus attacked his kidneys and he had to be put on dialysis. He stayed on it for 8 years until he finally had a kidney transplant. He received both the kidneys from a 5-year old who passed away. Since they were so small, the doctors used both of them.
I know I’m telling you my husband’s story, but it’s because his symptoms of extreme fatigue and pain holds true for many men, women, and children who suffer with lupus. So, I am speaking from facts and the experiences I saw him go through, and what I had to personally go through as the caregiver. The struggles were real.
With that said, I want women to know you are not alone. The pain and extreme fatigue you are experiencing is not in your head. And I’m talking about more than normal pain. That continuous pain. Immobalizing pain.
If you or someone you know is suffering with lupus symptoms, I encourage you to get checked out and be persistent in your pursuit to get answers from the doctor, and to get your illness diagnosed so you can move into the treatment phase. If you let up and stop seeking a diagnosis, you will be caught up in the system of being given drug-after-drug and going from doctor-to-doctor with no resolve.
With that said, I have invited Dr Bridget Leonard (a nurse and lupus advocate) to talk to you about lupus and the symptoms you need to know about.
Dr. Bridget Leonard DNP, RN, MBA-HCM, CRRN, NEA_BC – She has been a decisive and inspirational nursing leader with over 20 years experience in various leadership roles in the acute hospital and long-term care settings. She is the chief nursing officer of an inpatient rehabilitation hospital. Her passion for nursing has led her to work at every level of nursing from a certified nursing assistant (CNA) to a chief nursing officer (CNO).
Throughout the year Bridget spends time promoting lupus awareness. She and her teen daughter are lupus warriors and created the first teen lupus support group in Michigan. She is passionate and dedicated to increasing lupus awareness, not only locally, but also by speaking nationally at conferences.
Her Contact Info: Email Address – Info@bridgetleonard.com Facebook – Bridget Leonard