Thank you all so much for the advice and support! It means so much to know that there are people out there that understand the feelings that go along with this disease.
I haven’t been to my doc yet but I have an appt on Friday. I was still in panic mode when speaking to her nurse and they mentioned something about possibly being able to refer me for emergency surgery so I believe surgery is the route they are leaning towards. My doc does know about my financial situation and the last visit I had with her she told me to start with Medicaid and we would go from there. When I see her Friday I will discuss all these ideas/options with her and see what she thinks. I will go ahead and contact the state agency as well.
I haven’t had any more trouble breathing since the other day so that is a plus. I sometimes have a slight difficulty depending on how I’m holding my head but I’ve learned how to deal with that. But if anything like the episode I had the other day happens again, believe me I or my husband will be dialing 911 asap.
I just want to say thank you again so so much for the support and understanding! When I was first diagnosed I felt so alone. With the exception of my husband, it felt like NO ONE understood the fatigue, insomnia, tremors, irritability, brain in a cloud, heart pounding symptoms that went along with a "bad day." Because there were "good days" sometimes, it felt like my teachers at school and some others thought I was just faking it…which was so very frustrating. Especially when some days you just don’t even have the energy to explain. Just to know that there is a community of people out there that have been through or are still going through this is so comforting.
