That's how I feel today. Here's how Sjogrens is affecting me:
1. It attacked my thyroid. Now my thyroid is underactive. This means its very difficult for me to lose weight. This is really tough for me. I am on a daily medication for hypothyroidism. I may have to start seeing an endocrinologist soon.
2. It attacked my tear ducts so I have dry eyes. Even with corrective lenses it's tough for me to get 20/20 vision because of this. My eyes burn all day and by the end of the day sometimes I have to go to bed early because my eyes hurt too much. I tend to get conjunctivitis at least twice a year. I can't go anywhere without eye drops and each night I have to put ointment in them before bed.
3. It attacked my salivary glands. In many Sjogrens patients, they have dry mouth. I don't have that problem...yet, but my parotids (the largest of the salivary glands, on the sides of your mouth) are chronically inflamed. This means that they produce saliva, but don't drain well. I have to press on them to release the saliva. They also get infected easily because of this lack of drainage. Infections are very painful and make it difficult for me to eat solid food. These problems could eventual affect my dental health as well. I have to take chemotherapy once a week to combat the inflammation. I also have to take a prescription B vitamin to combat fatigue from the chemotherapy and get quarterly blood tests to make sure my body is properly filtering the chemotherapy.
4. I get frequent sinus infections. Unfortunately I also have year-round environmental allergies (damn 100+ yr old office building) and my nasal passages can no longer produce sufficient moisture to flush out these allergens. So I get sinus infections. The sinus infections cause additional drainage problems with my salivary glands. See # 3. I do take a daily allergy medication, and though it stops my eyes from swelling shut at work and the sneezing from ruling my life, it tends to dry me out more...
5. I have inflammation in my cardiovascular system which has caused discoloration as well as swelling in my feet and ankles. That may or may not clear up. I don't take any specific medication for that right now.
6. Because my immune system is all out of whack, I am prone to other types of infections as well, including viral and fungal infections specifically my feet (actually just my right foot). I see a podiatrist for that and we're currently undecided on a treatment option. The best medication in most cases can affect the liver and/or kidneys and since I'm already on chemotherapy that isn't the best option for me.
7. I see several different doctors: a general practioner for preventative care and wellness, an ENT for the parotitis, a rheumatologist for the Sjogrens itself, a chiropractor for general wellness and spinal adjustments, a podiatrist, a dentist, and I may have to start going to an endocrinologist as well. And don't forget the phlebotomist every three months. I've also considered going to an allergist to see if another kind of allergy treatment might be better (immunotherapy?) considering the drying side-effects of OTC allergy meds. I feel like I have a doctor's appointment about every two weeks.
8. I have several thousands of dollars of medical bills that I will be paying off for the next several months, possibly years.
9. I struggle with choosing an insurance plan that makes the most sense in terms of cost and tax benefits considering the cost of my care.
10. I'm tired. Not like I-need-sleep tired, but like my body is heavy and I can't carry it anymore. It's extremely frustrating for me because I don't like to slow down. It makes it hard for me to be a good mom sometimes. I hate that. Then I feel guilty because I know many others have it worse than I do.
11. Although I knew I had already decided I didn't want to have any more kids partly because I think pregnancy would be difficult for me I still mourn that loss of potential children and the chance at a "normal" pregnancy and delivery. I also wonder if I should consider a more permanent form of birth control since my chemotherapy can be very damaging to a fetus.
12. I'm stressed. I'm emotional. I'm freaked out about managing all this. Oh yeah, I'm on a daily med for that too.