I remember the day we finally found out what he had…
Dwayne had been experiencing pain in his jaw since before I met him. He sometimes complained of joint pain after a night of competitive volleyball. He even had an incident of severe chest pain that landed him in the hospital overnight, just weeks after we started dating, which turned out to be lacerations in his esophagus due to extreme acid reflux. Looking back on these symptoms… clearly, he had already been struggling with scleroderma.
He was 34 years old when I met him. Two years later, in August 1997, he had cut his fingers fairly deeply with a utility knife while working on something at my house. A few weeks later he mentioned that he must have done some damage to the nerves, since his fingertips were so very painful. I realized the fingers where he had pain were not on the hand that he had cut. And some of the fingers had uneven red blotches at the tips.
He went to several doctors. I don’t recall how many, but it was a lot – particularly for a guy who never, like ever, went to the doctor. When my mom, a lifelong and dedicated nurse, looked at his fingertips, she immediately recognized what she saw as a vascular problem and told him he needed to see a rheumatologist. And not just any rheumatologist. Mom used her influence to get Dwayne an emergency appointment with Dr. Aponte, an exceptional physician with whom Mom had high regard due to her personal work experience with him and observations of him over many years. He saw the doctor on the day before Christmas Eve, 1997, and was diagnosed within minutes. It was, in fact, diffuse systemic scleroderma.
I admit, once Dr. Aponte diagnosed him, I felt tremendous relief. I was relieved we knew what it was. I was relieved he was under the care of the doctor that had diagnosed and cared exceptionally well for other family members of mine that had rheumatoid and lupus, and they were living fairly normal lives, largely in remissive states. I was glad!
Nobody can tell you how your own experience with living with a degenerative disease will go. And I absolutely underestimated the challenges and severity of his disease.
Dwayne lived with many demoralizing and debilitating attacks from his disease for the next 17 years. There were painful challenges and threats to so many of his body’s systems – digestive, pulmonary, circulatory, connective tissue, ear-nose-throat, skin, teeth, urinary, skeletal… He was a silent sufferer, and I don’t think anyone knew the totality of the agony and suffering he endured as his body deteriorated.
Luckily, we had excellent resources. In particular, we had my mom.
Finding our rheumatologist and our diagnosis was just the tip of the iceberg. Mom not only spent her life as a healthcare professional, but also as a highly ethical thought leader, a compassionate caregiver, an outstanding role model, mentor, and friend to so many other healthcare professionals. Throughout her career, she had amassed a network of incredible people that she could reach out to with insight and knowledge about whatever Dwayne and I came up against. Every new challenge that we faced, she knew someone that knew how it would go, who best to talk to, which doctors were good… I know now what an amazing gift that had been throughout our entire journey.
And I also now realize that most people do not have this kind of support as a ready resource. All of us need an advocate, someone that can help us navigate the unchartered labyrinth that we enter when we are faced with a frightening diagnosis or new normal due to an injury. If you have a friend or relative like my mom, definitely lean into them. For those of us that don’t, here are some resources that might be helpful to at least get you through the initial shock and get a broader understanding of what you will need.
At BetterWayz, we know what it is like feel overwhelmed by illness or injury to you or your loved one. The physical implications are only one dimension of the challenges during times like these. A first step to getting back to a manageable life experience is to find resources who understand the current state of the medical arena to help you navigate. You are not alone experiencing that it is so hard to do this on your own when overwhelmed by the emotional, logistical and physical impacts of your situation.
This website helps Ohioans who are searching for advocate support find what they need. It also includes news, tools and resources when you or your loved one needs support with medical decisions and processes.
Please visit our website at http://betterwayzsolutions.com to learn more about BetterWayzTM.
