Tuesday, May 19, 2015

16 years

This Fridays marks 16 years since Mike and I dedicated our lives to each other. There have been many adventures since we walked up that aisle as husband and wife. Shortly after our first wedding anniversary, I was having seizure-like episodes that led to several tests including a spinal tap - a very painful, horrible, yucky test with a LARGE needle! I have dragged my adoring husband across the state so I could pursue better career opportunities. He followed reluctantly, not wanting to leave the Tri-Cities, not wanting to leave the home on which we had just completed the two-year remodel, but falling in love with our corner of Western Washington. 

We survived the first 18 months of our marriage where we barely saw each other as I finished up my bachelor's degree. We survived my attempt at graduate school while working full time and volunteering for the Society of Women Engineers (SWE) and church. We survived my layoff during the Great Recession in which I have found a job where I am thriving. We have muddled through my health issues and Mike's health issues. 

As difficult as being layoff was and as trying as my health can be at times, our commitment was tested six years ago. We had been married over 10 years at this point. After I settled into my new job after the layoff, I felt ready to begin the adoption process knowing it would take us several years to bring a child home, regardless of the adoption process we chose - international, domestic infant, or foster care. Mike felt I had changed my mind after ten years, betrayed by me deciding to want children. I knew if we ever decided to have children it would be by adoption. I just spent ten years flip-flopping on whether or not I wanted to be a mother; ten years is a long time for someone to decide they do or do not want children. Most people, particularly women, know early on if they want children. I wanted a career and wanted to continue to work even after adding children to our family. The adoption process is not easy, your entire life is displayed, exposed to the caseworker who reviews every detail - medical history, psychological, finances, criminal history of us and our relatives, substance abuse of us and our relatives, reasons for adopting, our views on child discipline and the types we plan to use, cultural views,our views on adoption, our relatives' views on adoption, inspections of our homes, pets' medical history, background checks for relatives - the list goes on. We had to address some core issues between us of why we wanted children, were we in the parenting game as a team, or would we allow this to separate us. There were difficult, painful arguments during the early part of our adoption journey where we both had to learn to listen to each other and communicate with one another. We are stronger spouses and parents for the process we had to endure, but I do not want to repeat those day, ever!

Mike, thank you for sticking with me through 16 years of marriage plus the four years of courtship! You have been my steady rock when the world is out of control. Your humor keeps laughter in our house, we all know I can't tell a joke. You are a great father and a good role model for our boys. Thank you for reminding me to have fun and enjoy each moment of life. I loved you then, I love you now, and I always will! Happy 16th Wedding Anniversary! 



Wednesday, May 13, 2015

Sjogren's and the Health Care System

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.