September marked the 24th year since my Sjogren's Syndrome diagnosis. I was twelve years old with swollen joints, frequent fevers, and constantly not feeling well. In 1990, Sjogren's was a mystery to my mom, me, and even the doctor. No one knew how it would effect me over the years. I have never had the standard dry eyes and dry mouth symptoms. I have arthritis; I have a multitude of neurological symptoms - vision problems, muscle spasms, neuropathy, phantom pain; I experience the drying out of the pleura (chest cavity lining and lining around the lungs); fertility issues. I have other symptoms that no doctor has ever been able to connect to Sjogren's, but has not been able to completely rule out a connection. My severe allergies, food and environmental, is due to an immune system not properly functional, but are the allergies and Sjogren's connected? I have unexplained tachycardia, a rapid resting heart rate now controlled with medication. I don't produce my hormones in the proper quantities so I have developed Polycystic Ovarian Syndrome (PCOS). I produce too much androgen and too little progesterone. Over the years I have been tested for a multitude of diseases to rule things out such as multiple sclerosis, lupus, and diabetes. I feel like a medical guinea pig oftentimes.
When I look for a new doctor, it is an interview process. I need to find out if they are willing to deal with my health as a whole or just certain symptoms. As I have learned through experience, symptoms that may seem disconnected are actually part of the larger diagnosis - Sjogren's. I prefer internists and nurse practitioners over general family doctors. Nurse practitioners tend to take the time to listen and explore my symptoms to determine if we need to treat Sjogren's as a whole or if we can treat just the symptoms. Coming up with some of my connections of Sjogren's causing certain symptoms have taken several years (neuropathy and certain feminine issues). Internal medical doctors (internists) understands the complexities of the body as a whole. Besides a primary care doctor or nurse, I also have a team of nine specialists: allergist, neurologist, urologist, rheumatologist, gastroenterologist, endocrinologist, chiropractor, optometrist, and massage therapist. Occasionally, I will be referred to a specialist for a short period if a particular symptom has my medical team stumped. Once I saw a different allergist who was willing to test my IgE for my food allergies instead of just the scratch tests and food elimination. She was the one who identified I had a mint allergy triggering many of my other food allergies since all my IgE's came back negative. I still have severe food allergies that trigger anaphylactic-type symptoms, but my IgE's all say I should not have such a reaction. Now we are trying to determine if my reaction is really anaphylaxis, or some other type of allergic reaction that affects the tongue and soft palate. Another time I saw a specialty gynecologist to help determine why I have vaginal pain and numbness, at the same time. After a multitude of tests and two exams, she concluded I had vaginal neuropathy, rare, but plausible. Most likely a neural symptom of the Sjogren's just as it caused my peripheral neuropathy in my feet. She and her colleague found my case fascinating because my pain and numbness is bifurcated - one half is almost completely numb, the other half experiences excruciating pain from the slightest touch. When you talk about symptoms in the general public, this is one that is left out. Vaginal neuropathy is discussed with medical doctors, most who have never heard of it, and with a select few of my fellow chronic conditions patient friends.
Most recently, I have began seeing a gastroenterologist for abdominal pain that began last fall. I rang in the New Year with an endoscopy/colonoscopy. That experience is a blog post of its own. The results are that my neuropathy is affecting my intestines. Again, this is a rare symptom. As I learn that more and more of my aches and pains are caused by neuropathy, I am more able to accept the fact that it is just my brain not communicating properly with my body. They are not life threatening, the pains may be excruciating but they will subside.
Twenty-four years since diagnosis and we (my doctors and I) are still learning about Sjogren's, how my body is going to manifest symptoms, and how I will react to treatments. With my experience I am able to help others as they embark on the journey through chronic illness. There are lots of emotions, many questions, new coping skills to be honed, and adjustment to a new way of life once someone is diagnosed with a chronic illness. The goal is to live with the illness without it controlling your life. While there are no cures for a multitude of chronic illnesses, there is hope that a patient is not alone, there are others in the community, such as myself, who can provide a listening ear, an encouraging word, and resources. When I started my journey as a frightened 12 year old, I felt alone then I found support with middle-age women while I was in high school. Even though there was a generation gap and our symptoms varied, we understood each other about dealing with doctors, medications, and modifying routines. If you are a chronic illness patient, I encourage you to mentor the newly diagnosed. Just as new employees need mentors on the job, new patients need a mentor/encourager as they navigate their illness. If you are newly diagnosed, I highly recommend reaching out to those you know who have chronic illness to ask for the support you need this early stage of your diagnosis. Don't travel this journey alone, it is long, and oftentimes terrifying, the buddy system is best.
