No Doctors spontaneously combusted during this exam...

This week was one hell of a week...

I got through the Borg like brain contraptions. In fact as soon as I saw there was a file on it this time, I took off the leads myself. I did not even let the tech do it. I ripped them all off and left the office. That was the longest six days I have had in a long time. Every time I moved it would pull, half the wires pulled themselves off. It was difficult to sleep when I rolled on the box every two hours it seemed. But I got through it.

Thursday I broke down for the first time in six months. It is not something I like to admit, but the last time I broke down was when my grandmother died. Some of my friends have said that six months of putting up with what I have put up with was way too long to break down... I normally am not an emotional person. I keep things in and am normally very even (no real highs or lows). It all started while I was watching a movie and hearing the Beatles... All you need is love. I don't know why that song started it but after that something in my brain just started and it happened. I have not been able to do it again since then even though it felt pretty good.

Friday I woke up early for my Spinal Tap, and did it go to eleven. The epidural did not feel like it worked (This would not be the first time a numbing agent did not work on me, once it happened with my wisdom teeth). I felt four separate punctures and each one there was a searing pain like dry ice going down my left leg.  Now I have been tazered and it sort of felt the same to me, but only from the puncture point down my leg.

I laid there for two hours on my back, which for me is rough because I can not sit still... For three days later I am still feeling horrible. I have a stiff neck, headache and have almost thrown up...

Hopefully I will feel better soon. May have to go back to the hospital if this keeps up... Not looking forward to that.

Thursday I get my results for my 72 Hour EKG and today I received my two week EEG in the mail. At least with this one I can take the leads off and shower.

Just not in a funny or movie quoting mood.

Till later in the week.

Fall down Seven times, get up eight... Japanese Proverb

Last Friday I had an EEG put on for 72 hours (supposedly). Now my trials and tribulations with this test are growing exponentially. I was originally to have it put on several weeks ago, but the technician felt unsafe to come to work because of an earthquake in Virginia to do the test. Now mind you people in Richmond Virginia were still at work at this time and they were at the epicenter of this event. So I wait patiently for the next appointment which was Friday.

     If you ever have the option of getting this test done, don't. It is a huge inconvenience to your life. You have wires coming out of your head and every time you move one of them feels like they are getting pulled off... When you try to sleep, and I really do mean try, you roll onto a box that is recording all of the information or are worried that all of these wires will wrap around your neck and asphyxiate you in your sleep (Now some of you might be into that, but I am not).

     So I spend my weekend unable to do much because of all of these wires. Monday arrives and I head in early to have this borg like device taken off of me only to find that nothing was recorded. This could mean one of two things; I have no brain functions (which many would say is true) or the machine did not work. So a 72 hour EEG  turns into a 144 hour EEG.

     I sat in the chair while they checked to see if the new one was actually recording and that I do have brain functions. As I sat there looking at the lines moving up and down on the screen, I wondered... Can the doctor see my cold seething fury in those lines? Is there a certain spike that can be deciphered as my hatred for all these tests and set backs? Does the machine know I want to rage against it?

     I am writing this while still feeling this cold fury for all things medical, but I am starting to come down from that Seething High one gets whenever you feel like you want to destroy something beautiful...

     I know I need the test... even though it will show nothing, like all of the other tests.

     So as I get knocked down over and over again. I get back up like the punch drunk fighter refusing to stay down for the count, thinking maybe one more haymaker may connect and change the outcome...


Yo Tommy, I didn't hear no bell...  get up son of a bitch because Micky love me... One more round... just one more round... I keep saying to myself...

More to come after my spinal tap (and hopefully more movie references from it).

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...