But it goes to 11

Saw another new doctor today.

     Today was the Infectious Disease Doctor... He was very thorough and is checking for anything and everything it might be. I am happy to be going to the ID because it is someone who is looking at other options other than optic migraines which none of the medicines seem to help with. I had eight vials of blood taken, which seems like a lot, but if it will help they can take it all. The bad news is that I m getting a spinal tap also, which I am not looking forward to being awake while a needle is inserted into my spine, well that and hopefully no drummers will spontaneously combust or die in a horrible gardening accident. That is about what I know of Spinal Tap.

     The rest of this week I will be hooked up wires and batteries to observe my brain waves (if they can find any) and heart rate (I am starting to feel as though I am making up the case of the Wizard of Oz).

     On the emotion front, I am lonely. I spend my time laying around and walking alone in the park. After a few laps I just sit and stare at the sunset and wish my life were back to normal. Looking at the horizon and dreaming of what may be and what could have been. Wishing for a miracle or just good news. I do not care the news right now, just anything. What have I turned into? I hate life. I am normally used to being alone, but with no car alone and stuck in one place that isn't yours is rough.

     I think I feel worse because I got to see my bed. Not the day bed I am stuck in while being unable to do anything for myself, but my queen sized bed I spent a ton of money on so I could be comfortable when I sleep. I laid down on a lot of beds to find the one that felt right. Then I brought my car back so my mom might be able to use it to give her car a break. I drove it, from the driveway to the lawn. Five months without a car and 20 seconds in the drivers seat I wanted to drive it cross country and not look back at all my doctors, all my problems. That would not work since at any time I could lose my vision or think something was coming at me.

     I do not want to be alone. I do not want to lie to my family. I do not want to feel horrible.

     I would like a good night sleep where I don't get to sleep at 3 am and wake up at 530 then feel horrible for the rest of the day.

     I am stuck in life. I watch everyone moving forward with family, friends and career. I am stuck in limbo. Maybe I will have pictures of my borg like state at the end of the week. That will at least be interesting.

Are the words Unusual and Rare ever a good sign?

Ok, Two doctors appointments today (three if I include the psychologist) totaling eight hours, it almost felt like a work day.

     First was the Psychologist who went over my life with me and agreed I had issues, but none of those were contributing to the chinese new year fireworks show going off in my vision. I felt very comfortable with him, too bad he does not take any insurance... Or I would go see him again.

     Next was a neurological consultation at Thomas Jefferson. The N5 (Neurologist #5) gave me the same results as all the other ones... Optic Migraines and a new medicine. N5 (who is on a one year fellowship) brought in one of the full time doctors who commented as soon as he walked in the door, "So I hear you have some unusual symptoms. I became a side show freak for the neurology department at Thomas Jefferson... he had to come in to see the freak. Talking with him he gave several warnings about the medication, one of which was if I started to get blisters in my mouth go to the emergency room immediately... Good to know it would be the medicine since I have not been out with anyone for four months now.

     He described what the typical migraine aura is and asked me if that is what I had. I said no and described 20 of the different ones I do get and the blindness. He said it sounds similar to optic migraines... similar (But not what he described).

     I asked him would this medication also help with all of my other symptoms (ie. Fatigue, trembling of hands and legs, concentration issues, and memory loss). He related that what I have is "Rare" and we will have to see...

     I do not like the words unusual and rare coming out of my doctor's mouth. I would much prefer rare and unusual being gems or precious metals I have found or the sushi guy telling me of an unusual and rare fish I would get to try.

     I was also given prescriptions for Riboflavin, Melanin (spelling is off there), and a study in biofeedback for the stiff neck and back that I get.

     I left there not feeling very confident that they know what is going on with me.

     I went to my cardiologist and got a carotid ultrasound and the only good outcome from that would be if I got to have a picture of it and hang it up on my fridge and show all my friends... but alas it looked good but I did not get a picture.

     Next week I will look like Borg (not Bjork because that would be weird) with wires coming out of my head  and chest to do two different studies...

     Wish me luck only 100 more doctors appointments left... If I forgot anything which I probably did, I will update later...