Since April is Sjogren’s Syndrome Awareness Month, I thought I’d write a little about what it’s like to live with this disease.
- My Diagnosis: I began complaining of dry eyes and a very dry mouth to my Rheumatologist shortly after being diagnosed with Fibromyalgia. I was having other health problems at the time but although my blood work showed a high ANA, nothing could be determined. I also was already diagnosed with Myasthenia Gravis, Ulcerative Colitis and Anemia at that time. When he say my tongue he was shocked. He recommended that I visit an ENT to get a diagnosis and an Opthamologist. The ENT refused to do a lip biopsy because he was concerned about my healing. The Opthamologist saw how dry my eyes were. We tried OTC artificial tears first. When they did nothing to relieve the dryness, he inserted tear duct plugs. Within 2 months both doctors decided to diagnos me with Sjogren’s without the blood work because I had the hallmark symptoms of this disease.
- My Treatment: I am now using Restastis, have two tear duct plugs in each eye (this varies as my dry eyes can get better at times), use OTC artificial tears, gel at night and take prescription form of Folic Acid. I can’t eat spicy foods at all and drink a lot of water every day. I see the dental hygienist 3 times per year and the dentist twice. I go to a dermatologist 3 times a year partly because of my severely dry skin. I wear sunglasses when ever I am outdoors (even if it is cloudy). And I see my Rheumatologist every 2 weeks for B12 shots. (please note that this is also due to my other diagnoses)
- How I Feel: Sometimes my eyes hurt because they are so dry that they feel like I have sand in them. I am frequently tired. My mouth is always dry, along with my lips. I have bad gums and cavaties even though I brush my teeth 3 times per day. My skin is dry and flaky and I sunburn easily. I have other symptoms but because I have other diseases it is hard to distinguish what causes what.
- What I Do To Help Myself: I laugh a lot, especially about myself. I try to think positively and surround myself with positive people. I do things that I enjoy. I sleep when I need to and try not to overwork. I keep updated on all of the new information about Sjogren’s.
- What I Do To Help Others: I try to educate people about Sjogren’s and about all autoimmune diseases. Please share that this month is special to me and a lot of other people too!