Rosemary’s health concerns date back to 1984, when she was diagnosed with lupus and interstitial lung disease. In the decades since, she has been diagnosed with several other conditions, making each year more complex and challenging than the last.
Looking back on her nearly four decades of managing symptoms stemming from these conditions, she reflects on six key factors that have helped her persevere — with peace, strength and hope.
Another Decade, Another Diagnosis
In September 1984, I had double pneumonia. After taking [prescribed] meds, the symptoms continued. In November, further tests revealed that I had lupus with interstitial lung disease.
The following year, I was diagnosed with polymyositis. In 1988, I was referred to a double-blind white blood apheresis study with NIH. Additional disorders were diagnosed afterwards.
In 2009, I was placed on oxygen for pulmonary fibrosis. In December 2012, I had a right heart cath test and was diagnosed with another rare disease: pulmonary hypertension. Also in November 2017, I was diagnosed with endometrial cancer.
Priorities & Sources of Strength
What has helped me live 37 years with an auto-immune disorder, two rare disorders and cancer:
1. Education: Educate yourself on the disease and the treatments recommended and know [how to recognize] a flare.
The hardest thing [about] living with multiple health conditions are continual symptom flares that require doctor visits, lab fees and additional medicine.
My priority for care is being alert of symptoms. With the exception of pulmonary hypertension, I have a three-day rule: any symptoms continuing for three days will prompt me to contact the doctor.
With pulmonary hypertension, any overnight weight gain of three pounds or aggravated shortness of breath/chest pain is concerning [enough] to contact the specialist ASAP.
2. Specialists: Find a specialist who is not only concerned about lab results, but also your day-to-day activities/pain level.
Currently, I have nine specialists/PCPs. Generally, I end up having at least two to three doctor appointments a month, with different specialists depending on the crisis.
3. Community: Find a social media group for your disease for community. Even if you have family members who understand your disease, there is always a sense of safe haven with those who have the disease and who understand your pain/journey. You are not suffering alone.
4. Spirituality: Connect with the spirit/universe/God in helping you live with the struggle. [This] can give you peace and comfort that humans cannot. In spite of the pain, God has a purpose/plan for your life.
My biggest source of comfort is my faith. I am a Christian believer and practice biblical principles. Although I struggle with clinical depression, I fight to remain positive “in spite of.” I also have friends who encourage me.
5. Life After: Realize that despite the suffering, there is still life that you can live, no matter how small it may be. Find something fun/fulfilling to do that will lift your spirits.
6. Encouraging Others: You will find strength and comfort when you share your story of standing in the midst of suffering. Not only will it uplift others but [will] also brighten your spirit. The comfort that God has given you will help others who walk on the same path.
Diagnosed with lupus, interstitial lung disease, polymyositis, fibromyalgia, costochondritis, arthritis, pulmonary fibrosis, endometrial cancer
Are you living with one or more conditions? If so, share what helps you power through.