Thursday, July 9, 2015
I woke up early this morning and did not start the day off on the best note. I was scheduled for a doctor's appointment in Boston at 10am with a new oral medicine doctor at Tufts that I saw for the first time three months ago. And as soon as I woke up, I was dreading the drive (1 1/2-2 hours each way) and the pain that was going to come with seeing her.
I started seeing her because my current rheumatologist thought she could help me with the pervasive, severe dry mouth issues I have been having since I developed Sjögren's syndrome. To be honest, I wasn't sure what she could do for me that I have not already tried. But, that first visit convinced me I was in the right place. I found out that the swollen lumps in my neck, that doctors told me may be enlarged lymph nodes, were actually blocked salivary glands. At that first visit, she used pressure/massage and suction to remove small salivary stones from my glands and gave me instructions for other measures to do at home. Honestly, it was really not a pleasant experience and very painful, but in the end, worth it, as I have noticed an increase in saliva production the past few months.What many people don't know is that these stones can get so large that the gland has to be removed and once that happens, it's all downhill from there. If you take the gland that produces saliva, much less saliva. And, much more discomfort and complications.
So I got up this morning and got ready for another trip to Tufts, knowing more discomfort would come, but realizing the importance of the appointment. In addition, it was injection day and for some reason, today's was much more painful than usual. And it got me to thinking, especially as I was getting ready to leave and throughout the drive, about how much I go through with this illness. This of course brings up the typical questions that usually arise when I am feeling a little sorry for myself such as, "Why me?" and "Why do I have to suffer so much just to get through the day?" Then I realized something huge. Huge, and sad....
I don't really remember what it was like to feel "normal."
I have been symptomatic with Sjögren's since about 2007-2008 and I don't remember what it feels like to exist in my body without pain, fatigue, dryness, or organ complications.
Kind of like when someone close to you dies. For a while you remember their scent or what it felt like to hold them or hear their voice. Then, as the years go on, some of those tactile memoires fades.
The way I move about in the world has changed dramatically because of Sjögren's. The memory of an able body that moves without effort or hesitation has left the recesses of my mind. I don't have the right words to adequately describe the sorrow that comes with that knowledge.
My plan for today was to drive to Boston for my appointment and drive right back home. For some reason, I was under the impression that is was going to be like ninety degrees today. I got to Boston, with relative ease, which was a nice change, and it was in the high 60's. Now anyone who knows me well, knows how in love I am with the City of Boston.
Like, head over heels obsessed.
This obsession started when I began dating my husband, who is a Boston native. He can drive the streets of Boston like the maniac local he used to be. No fear and always knows how to get somewhere, eventually that is. As a native of the western part of the state, before he and I met,I enjoyed going to Boston on rare occasions, but it always felt inaccessible to me.
It was my husband who gave me the gift of Boston.
He showed, and still shows me, the points of interest, the back streets of the neighborhoods, and the places where I can soak my mind in history and culture. It was he who helped me find the courage to take the T (train) around by myself. It was he who helped me find the courage to roam the streets of the city without a map.
I keep thinking with every trip I take to Boston, and there are many, that the excitement will eventually wear off. That the city will become ordinary to me and my wanderlust of the streets and neighborhoods will fade with time.
But, it never does.
I got to my appointment and as I got out of the car, I realized how cool it was outside. And, how much it would help my mental state if I spent some time walking my favorite city. I had casual clothes on and my best sneakers, orthotics and all.It was like God was saying to me, "Here is an opportunity to feel better....take it." I called the dog sitter, who said she would be happy to go pick up my dog, so I didn't have to rush home.
I had my salivary glands suctioned out and while it was not pleasant, it was easier than last time. My guess is probably because it was done before, three months ago, On top of that, the saliva tests that were run showed that I was actually producing more saliva. She talked to me about some promising treatments coming down the line including a clinical trial she will be doing with a new biologic medication and the use of BCP, a vaccine for tuberculosis, for autoimmune disease.
The doctor was happy. I was happy.
But here is what REALLY made me happy: how I was treated at this appointment. She had a new assistant doing my salivary tests and getting me ready for the appointment. She talked to me like a person, and not as a blood pressure or a temperature to take. We talked about our summer plans.
The doctor came in. I have seen her once for an appointment and met her twice, briefly, during SSF events. Yet, she remembers important facts about me that a previous doctor I had for four years, wouldn't be able to recall if her life depended on it. Like the fact that I am a lymphoma survivor. And, that I wrote a book. And I like the fact that she can joke around with me and make me laugh. Or randomly ask one of her students why she is wearing such uncomfortable shoes.
Things that make me feel human.
Those of us with chronic illness need simple things...
We want to be taken seriously.
We want to be treated as more than an illness: as a human being.
We want things explained to us.
We want to be heard.
So I left my appointment feeling better than when I went in. After checking out some possible venue sites nearby for an upcoming SSF Sip For Sjögren's event, I went back to my car and dumped my purse, my samples from the doctor's office, and everything else except for my phone, my driver's license, a credit card, and forty dollars.
And off I went into the city I love.
I walked through Chinatown and ended up at Boston Common. I somehow found my way to my favorite gluten-free restaurant and enjoyed lunch by myself in a comfortable booth outside on Charles Street. Prime people watching spot! I meandered to the Public Garden where I sat on a bench and did more people watching.
It's a rare thing for me to walk around Boston during the summer. It's usually much too hot and sunny for my autoimmune ridden body. Not today though. It was perfect. And because it is summer, school is out, and people are on vacation, the city was bustling. The swan boats were in full swing and every corner you turned, there were street performers.
I made my way through Downtown Crossing and to Faneuil Hall and Quincy Market. It was like a party there...a dance troupe and musicians everywhere you turned. I window shopped. I passed two large tour buses that certainly looked like they belonged to someone famous, evidenced by the increased police and security presence. The energy was high, and so was I. High from having my soul and my spirit filled by a city I have come to regard as a second home.
I guess my point in all this is to emphasize how important it is for those of us with a chronic illness to care for our spirits and our souls as much as we have to take care of our bodies. Boston is my refuge. It's probably not yours. A city may be the last place you find solace when you are feeling overwhelmed from the enormity of it all. But find something. Something that reminds you that you are more than your illness and that there is life outside of the daily drudgery of medical appointments, medications, and tests.
Something that reminds you of the beauty that comes with being alive.