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https://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/symptoms-causes/syc-20353216
We have remained quiet but the silence needs to end. Last year my wife, Nikki, began having episodes of fainting. I took her to emergency and thus began our journey. The first time she was told that she had a UTI, another they sad she was dehydrated. Anxiety, Fatigue, more UTI’s, sinus tachycardia. 11 admissions over four months. I watched her struggle and I felt totally helpless. I didn’t know how to help her. She has been the rock of our family. As a nurse, she loved what she did and she was very good at it. I depended on her for everything because she was an Army wife.
As the year progressed she got sicker and sicker. She would faint just out of nowhere. Many days, my usually active wife could only lay in bed. If was the safest place for her as I continued to work. Through her strong advocacy she received a diagnosis in December 2018. POTS. POTS. POTS???? What is that? It turns out she had Postural Orthostatic Tachycardic Syndrome. Average diagnostic is five years. She managed to get one in five months. She began seeing a cardiologist that specialized POTS patients. He told us that there was no cure . As time progressed she got worse. Finally, the doctor said that she needs more help than he could provide.
Thus, our journey to the Cleveland Clinic began. Our insurance covers her testing at the Cleveland Clinic but not the Doctors. We are asked to pay half of the visit out of pocket before she can be seen. As a Army Veteran, with federal insurance. We thought it had some of the best insurance out there. Ha! So wrong. The financial advocates would call and say $3400 requires up front. $1249 for this visit. All the while your staying on a hotel, eating and are away from home. A visit that turned from 1 1/2 day to 5 days. Test after test. Seeing the Doctor, who runs the Dysautonomic Clinic is necessary but the insurance won’t cover it. It’s the closest to home but insurance wants you to pay $10,000. The only medication that helps is used off label and at the cost of $245 per month . While there, she also diagnosed with Sjögren Syndrome. This explained why she would choke on simple things. Again, no cure. She can no longer work. The vibrate, active, smiling woman was no more. She would stay in the house, in the bed for days at a time. She couldn’t do much. She loved to cook. She can barely manage to take care of herself. A simple trip to the grocery would leave her exhausted, sweaty, heart racing , blood pressure through the roof. Life has become a no more hot showers, taking one in 3 minutes because her blood pressure would drop and she was at risk for passing out. She can no longer walk long distance so she uses an electric scooter that wasn’t covered by insurance. She was told that she can no longer work. So at the of 44 years old she has had to apply for SSDI.
This has taken the best of her. We are using everything to try and get treatment and hopefully help her go into remission. Sjögrens will effect her eyes, mouth, liver, and kidneys. Now she goes to the infusion center bi-weekly. All of these things cost, a lot. If you can help us as we go down this road. Thank you and God bless.
We have remained quiet but the silence needs to end. Last year my wife, Nikki, began having episodes of fainting. I took her to emergency and thus began our journey. The first time she was told that she had a UTI, another they sad she was dehydrated. Anxiety, Fatigue, more UTI’s, sinus tachycardia. 11 admissions over four months. I watched her struggle and I felt totally helpless. I didn’t know how to help her. She has been the rock of our family. As a nurse, she loved what she did and she was very good at it. I depended on her for everything because she was an Army wife.
As the year progressed she got sicker and sicker. She would faint just out of nowhere. Many days, my usually active wife could only lay in bed. If was the safest place for her as I continued to work. Through her strong advocacy she received a diagnosis in December 2018. POTS. POTS. POTS???? What is that? It turns out she had Postural Orthostatic Tachycardic Syndrome. Average diagnostic is five years. She managed to get one in five months. She began seeing a cardiologist that specialized POTS patients. He told us that there was no cure . As time progressed she got worse. Finally, the doctor said that she needs more help than he could provide.
Thus, our journey to the Cleveland Clinic began. Our insurance covers her testing at the Cleveland Clinic but not the Doctors. We are asked to pay half of the visit out of pocket before she can be seen. As a Army Veteran, with federal insurance. We thought it had some of the best insurance out there. Ha! So wrong. The financial advocates would call and say $3400 requires up front. $1249 for this visit. All the while your staying on a hotel, eating and are away from home. A visit that turned from 1 1/2 day to 5 days. Test after test. Seeing the Doctor, who runs the Dysautonomic Clinic is necessary but the insurance won’t cover it. It’s the closest to home but insurance wants you to pay $10,000. The only medication that helps is used off label and at the cost of $245 per month . While there, she also diagnosed with Sjögren Syndrome. This explained why she would choke on simple things. Again, no cure. She can no longer work. The vibrate, active, smiling woman was no more. She would stay in the house, in the bed for days at a time. She couldn’t do much. She loved to cook. She can barely manage to take care of herself. A simple trip to the grocery would leave her exhausted, sweaty, heart racing , blood pressure through the roof. Life has become a no more hot showers, taking one in 3 minutes because her blood pressure would drop and she was at risk for passing out. She can no longer walk long distance so she uses an electric scooter that wasn’t covered by insurance. She was told that she can no longer work. So at the of 44 years old she has had to apply for SSDI.
This has taken the best of her. We are using everything to try and get treatment and hopefully help her go into remission. Sjögrens will effect her eyes, mouth, liver, and kidneys. Now she goes to the infusion center bi-weekly. All of these things cost, a lot. If you can help us as we go down this road. Thank you and God bless.
