I've had terrible tooth problems for as long as I can remember. I got my first cavity pretty young, and I've had several since which usually results in being scolded by dentists for having poor hygiene and lectured every dentist visit which, honestly, makes me hate even the nicest dentist.
After I graduated college, right about the same time I started dating Mr. P, I noticed my lips would peel all the time. I would wear lipstick, but after about 30 minutes, it would look terrible, and my lips always looked chapped, which has lead to the reason I always- ALWAYS- have a tube of Burt's Bees chapstick on my person. If I don't have it, it can make me have a panic attack.
I was diagnosed with Mononucleosis in November of 2011. I had endless doctor appointments for months and months which lead me to be sent to my local Center for Disease Control to confirm that I have "chronic Mono." With those blood results, I also got an extremely high, off the charts RA factor result. I was referred to a rheumatologist by my general practitioner. I went to the rheumatologist, she said I didn't have any symptoms of Rheumatoid Arthritis and she sent me home.
Two years later, I had more blood work. My RA factor came back high again, and again, I was told to go back to the same rheumatologist. Same result: I don't have RA symptoms. I don't have RA. Some people just have high RA factors. I'm fine. Go home.
Last November, I got more blood work, and my very persistent, amazing general practitioner sent me BACK to the SAME rheumatologist and told me not to leave until I got answers.
I went in with an "I'm not leaving this office until you tell me what's wrong with me" attitude, and I didn't. Finally, she started asking me questions- some of which revolved around my dental history and dry mouth (which I've had for as long as I can remember. I don't really think of it as a symptom as much as just a part of my life). After her questions, she gave me a blood test to check a few new things and about a week later, I came back with a positive diagnosis: Sjögren's Syndrome. I'd never heard of it, which makes sense. Usually people go years without being diagnosed. As it is with many rheumatology related illnesses, you have to have both a positive blood test AND symptoms. I'd had the tests and I'd had the symptoms, but no doctor had been able to put the two together. This is what happens with most cases of Sjögren's.
What is Sjögren's Syndrome? To be honest, I only know the bare minimum. I'm a hypochondriac at heart, so I've made it a point NOT to research it. I let Mr. P do my dirty work and tell me only the things that I NEED to know. It causes dry mouth and dry eyes. It can cause your organs to be inflamed and enlarged and it can cause chronic joint pain and mystery pains throughout the body randomly. It can make you really tired. It can cause anxiety. People with Sjögren's have a much higher chance of possibly developing lymphoma. Having a positive diagnosis explains why my liver functions are usually a little high, why I've had dental problems and why panic attacks come and go, just like all of my other symptoms.
Since I've been diagnosed, I've mentioned my autoimmune disease to a few people. Their first reaction has been to tell me that they know so and so and they are dying from Sjögren's or they've had this and this and this complication, which doesn't really help me out much. The thing is it's pretty common among autoimmune illnesses that if you have one thing, you will probably have (or have a potential to develop) another autoimmune illness (i.e. a lot of people with Sjögren's have Lupus, or RA, etc. etc. etc.). I tell myself in my mind the reason that these people have these complications isn't from Sjögren's, but from something else, but I have no clue what the future holds for me. I know because Sjögren's isn't very well researched, there isn't a whole lot I can do. There are treatments that people can be on, but I don't even like to take Tylenol. I would have to take a pretty serious turn for the worst to get on medicine and so far, I've been very fortunate not to have too many issues.
So far, I've only been diagnosed with Sjögren's. When I'm pregnant, I feel best. It's almost like the disease goes into remission when I'm pregnant (also common with AI illnesses). The scary thing about being pregnant is that I have antibodies that could cause a potential heart block in my babies in the womb (another thing I didn't know about until after we were pregnant with Baby P #2). I had to go to a specialist and have blood work to find out that yes, because of my autoimmune disease, my baby could need a pacemaker. Luckily thus far, we made it through one pregnancy (though undiagnosed, still symptomatic) and we've made it through this one with a healthy baby with a healthy heart. I pray every day that it stays the same and that this baby will be okay. I can't imagine the guilt I would feel if the baby DID have a heart block even though there is absolutely nothing I could've done about it.
Autoimmune diseases suck. They make you a victim when you haven't done anything wrong. If I was an alcoholic and I developed liver disease, it would make sense. If I smoked all my life and had lung cancer, I would have had to take some responsibility for that. With autoimmune diseases, nothing you do causes them. NOTHING. I was born and I grew up. That's why I have an autoimmune disease. I did nothing to encourage or prevent my illness, and there is no cure for it. When I die, I will die with Sjögren's Syndrome. I'm going to make it my goal not to die OF Sjögren's Syndrome, but I will have it for the rest of my life. And because I have it, and it can be hereditary, my kids could have it too. This is something that I've genetically passed on to them and I didn't even know I had it.
I am very fortunate to have the MOST AMAZING support system in my angel of a husband. When I'm feeling exhausted because it's a symptom of Sjögren's and there isn't much I can do about it, I am able to take a nap during the day. When I'm having joint pain, he listens to me whine and complain about it. When I'm convinced I'm having a heart attack because the chest pain is so bad (and I've gone so far as to have a cardiac catheter run to check my heart health), he reminds me that I have a terrible autoimmune disease and that it's likely those symptoms that are causing my pain, easing my feelings of impending doom. He loves me through my anxiety. He loves me through it all. I thank God every day for giving me him to help me bear this cross that I will live with forever.
So here's to you, all of you silent fighters. All of you who are fighting similar battles. Chronic pain that pops up with absolutely no rhyme or reason, rendering you helpless for a while. Those of you who look completely normal on the inside, but are fighting a battle that people outside of your body know nothing about. Here's to you. I'm here with you, fighting with you. We're going to be alright and we're going to make it. We weren't given a choice in our health, but we are strong and we will overcome it.
We're gonna make it after all.
Love,
Mrs. P
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