Hi Everyone. I have been sick. That is about all that I can say about that. The main problem with my conditions is that more than one has a brain fog component. This means that I can't focus, I can't think, I can't function. I am able to do rote things that do not require much brain activity. However, when comes to doing things like writing this blog, I'll just say that friends don't let firends flare and post. I have actually been out of it since August but I pushed through. I tanked in September because I pushed and October has been...meh. I have a few days left and since I have some active neurons I decided to come on and fix my last post and put out a new one.
I am on a new journey ya'll! I am post diagnosis. I am also pre meaning treatment. What does that mean? It means that I climbed up to the top of the food chain, so to speak. I started at the bottom with onset of symptoms and since 2009 I have climb through each layer of doctoros appointments, being misdiagnosed, being told that I am crazy, being ignored, not taken seriously and I emerged at the top of the pile with a DIAGNOSIS!!! The problem is that now that I am at the top I realized that through all of that I never got a proper treatment plan. I was flat out tired of going to doctors; so much so that I haven't really gone much this year unless something was about to fall off or kill me. I kind of had battle fatigue. I wonder if that is a thing?
During this several month downward spiral, if finally occurred to me that I have to do something better. Actually it was while I was laying on a table in urgent care trying to decide if it was worth the trip to come in here and save time and money to get looked over. Long story short...no it wasn't. However, whie I layed there listening to some horrible elevator music being pumped in to my room, I decided that something has to give. I have been generally weak all year. I have had to deal with things not Dysautonomia related but boy did my body make up for it! I realized that my little ways of managing were not working and I needed to do something new. I also remember why I didn't seek emergency help when it was a chance that I won't get admitted. So I way laying there and it came to me, Mayo Clinc, why not go? I read about it from other people with Dysautonomia and I figured that I could too.
Of course my tired brain frgot all about it for a few days but while I was at work trying to look like I was working, I looked up the Mayo Clinic. I reference this place often when looking up the wierd, strange and the less common. Unfortunately, it is always spot on about me. This time I wanted to find a spot for me, not just read about something that I may or may not have. My next Neurology appointment is in MARCH 2019. Yes I yelled. Thinking of going to my Cardiologist makes me annoyed because he is condesending but I need this loop recorder out of my chest. I decided to document all this just in case someone wants to know what it takes to get started and what happens next.
Am I Covered?
After perusing the website and getting my hopes up, I went to the first place to see if this was even possible; I called my insurance company. I had the Mayo Clinic's site up and saw that there are three locations in the U.S.: Minnesota, Arizona and Florida. My first choice was Florida because my sister lives there and because it should be warm in January. Oh, that is my desired time to go. I called the membership number on my card and I spoke with a nice lady. I asked if the Mayo Clinic was covered by my insurance. Then she asked me, "which location?" 'Which location?', I thought to myself. 'The clinic, what difference does it make.' Well a lot, I found out. After giving her the address of my desired location, I was told that it was out of network. I will tell you right now that I thought a small part of my heart shattered. I felt defeated and hopeless for a millisecond, that was all that I would allow. My eyes stung with tears but I would not allow them to come through. I that it was over but then the nice lady asked for another locations. What? 'Ok how about Arizona?' I was expecting her to say no again. I KNOW that I wasn't going to Minnesota in the winter. Absolutely, nuh uh. NOPE. Then she came back and said that it was in network. I think that I spun around in my office chair or I did it in my mind, I still don't know for sure. Arizona was in network! Warm Arizona, a place that I have been twice. Now that I knew that I was covered and I confirmed that all that I had to pay were co-pays for the visits I was elated.
What To Expect?
Armed with the information that would make all the difference, I called the Scottsdale, AZ location to get information about getting an appointment and what to expect. I live in Maryland and it is a long flight to Arizona. I need to know how long do I expect to be there, what do I need to do, what do I need to bring, who do I make an appointment with? etc... I called on a Monday and I was rold by the operator that the appointment line is always full on a Monday so I should be prepared to wait. I was on lunch so I did just that. I multitasked until it was my turn and once I got a live person I started with my questions.
I let her know that I am a new patient and I would like to make an appointment but I needed to know what to expect first. To my surprise, I was talking to a very knowledgable person. Please, people who make appointments, don't get offended, by when people are calling for appointments about heath issues, many of you make it seem like we care calling to bother you AND you don't seem to know a thing about anything medical. I'm just saying. This lady was very well informed about Autonomic Dysfunction and even the branch that handles it. She asked me about my conditions and was able to look up the doctors on campus who could possibly help. As usual, these doctors were booked full but they could help me and that was all I needed to know. The nice lady helped me open an account and asked me a litinay of questions. These were to prevent me from rehashing my life from birth to 2018 and to make my future calls easier. She told me that most epople who fly out for appointments have open ended tickets because their "stay" could be a few days, a week or more. However, I could let them know how long that I could stay so they can plan a treatment and testing option in that timeframe. The appointment lady (for lack of better term) encouraged me to call back at east once a week to see when the January calender would open up.
Now that I knew that my insurance would pay for it and that I was once step closer to an actual appointment, I reached out to my doctor to ask her opinion. My Primary is new to me and my issues but I have developed a trust with her that I valued her input. I sent her a long message in the patient portal and I asked her what did she think about Mayo Clinic? I wasn't sure what she would say but I knew that she could see from my chart that I tried ALOT of options. I sent the message and eagerly waited for a reply because it was important that my doctor bought in on me going to Mayo because she would be my reffering doctor and my medical point of contact. After two days I received a reply saying that she agrees with a second opinion. YESSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSS. I was excited and relieved. I didn't have any hurddles stopping me from going just the logistics.
All that is left is getting an appointment, a ticket, a place to stay and the time off of work. Once I get an actual appointment then I will be able to square everything away and get an idea of cost. If you need to stay, check here for suggestions when traveling to this Mayo location. I know people in the area and they will be able to house me when the time comes. Now all I do is wait. When I actually make an appointment and get a ticket I will let you know. Until then...
One day at a time.