Definitely not Horrorshow...

Ok, I know there has been a long absence from me, but I think my last vellocet were taking a lot out of me.

I said Med Free, Do what I please

med free to ride to breeze

med free baby I can't stay

I got to got to get away

My last meds I reached the top level and started to break out in a rash, which was what they were worried about. So I stepped down and I am completely off them. Since then I am sleeping 15 hours a day where I was barely sleeping, now I can not get enough. After two more weeks hopefully I will be completely balanced out again.

I had a zasnoot study done to check to see if I am narcoleptic. I do not know how anyone can be truly tested while being hooked up to all of the machines. With electrodes on my face, head, neck, shoulder and nogas, and tubes up my nose made it impossible to zasnoot. So I was supposed to be woken up at 6am. Instead I was awake at 5am waiting for the nurse to check on me. Then every two hours from 8-4 I was to try to take a nap. Of course I am going to be tired since I only slept 4 hours the previous night, and I normally sleep from 3am-10am because of the above meds. I went back to the doctor today (a month later) to get the results and it was not done yet. My doctor called to ask why and they said it takes 3 weeks to a month to exam (after it was a month already).

I then had a two hour, yes two straight hours inside of a MRI machine. Now I am no not by any means claustrophobic, but even I was a little unnerved when I opened my eyes seeing the machine three inches from my face. It did not help when I asked for a Punk internet radio channel they put on an emo one and one that played Oasis. Finally I just asked if I could chose one band to listen to and asked for the Murphys which gave me a good sampling of music from Flogging Molly, and the Pogues ... oh and the sharp object imbedding itself in my head for two hours did not make me feel any better. I got through it and guess what it showed? Absolutely nothing.

Today was a fun one. I felt as though the doctors were experimenting with me to reenact a Clockwork Orange. They put contact lenses in my Glazzballs, attached to electrodes. I was unable to blink and had flashing lights going off for about 20 minutes. To get to that point I had to sit in the dark for an hour, without anything to do. The contact lenses made me blub or they were adding artificial tears I do not know which. If you could not figure it out, I have fit in some of the vernacular from the Book to have some fun.

So this week is Thanksgiving. I am thankful for my Family, friends and that I still have relatively good health ( compared to other people I see at the Hospitals). I am thankful that no matter how down I get I know that it can get worse, but has not yet. I am thankful for a good beer, burger, or whatever else gets me through the day. I hope all who read this do something for someone else this year who is less fortunate than you. Give to those who need it rather than those who want it. I have learned I can live with surprisingly little (which coming from someone who is on the verge of a hoarder says a lot).

The one thing I am not thankful for is my second Spinal tap, which comes next week... That will be another week of me being laid up on my back in pain.

I will follow up with more after the Spinal tap and maybe getting some news from any of the tests.

I hope everyone has a happy, healthy and giving holiday season.

Fall Seven get up Eight

Ok, So here is what is new as of Today (I can not tell you tomorrow or I would play the lottery).

I met with a doctor at UPenn. My family Doctor wanted me to see this doctor, and when I called to make an appointment in July they quoted me February as the first appointment date. I said thank you but no. Somehow they called yesterday and asked if I wanted to come in. So I said yes.

This Neurologist seemed interested. I was there for about two hours (one with the fellow and one with her). Out of all of the Neurologists she seemed interested. She did not come up with a conclusion on one symptom, but it seemed like she wanted to figure out a mystery. The other Neurologists I have been to have threw their hands up in the air and pawned me off on someone else, after the medicine that they gave me did not work. They told me to find someone else to do it.

So good news, This doctor wanted all of my medical records no matter how small... She took my cell phone number so she could call me with any questions along the way. It was refreshing from a Neurologist. I have only found two other doctors who were interested enough to look past the obvious (which has not worked for six months). She also wants me to see a doctor friend of hers who has written papers on persistent visual disturbances to get his point of view.

So Bad news, I may have to get another spinal tap. Good news, More This is Spinal Tap references coming up. I was also asked if I would have a problem being in a MRI machine for more than 2 hours. Good thing I am not claustrophobic. I also have more blood tests... I think they should just leave one of those stints in my arm so they can take what they want to bleed me dry.

With all this doom and gloom in my writings, I have had two things make me happy this week. Sunday I went to a Buddhist Meditation with a Buddhist monk who fled Tibet with the Dalai Lama. It was a refreshing and relaxing day. Although I suck at meditating (I can not keep thoughts from jumping into my head... but I guess it needs work), it was a great experiences and I plan on going back for more. http://www.tibetanbuddhist.org/ for anyone interested.

With everything that has been happening to me lately I have been down for nearly five months. I found no way to get out of my funk. I am not out of it yet but these little experiences of happiness have helped. Going to the Buddhist Mediation session, seeing friends and going to their house for a day away from seclusion, and I had the best burger in the world.

This burger was from Village Whiskey in Philadelphia. It is one of Jose Garces Restaurants. If you do not know him he is an Iron Chef and his food is a South American Asian mix. This burger was amazing; it is the Whiskey King. 8 ounces of meat (Medium Rare of course), with Maple Bourbon Glazed Cipollini (Which are onions I just found out), Rogue Bleu Cheese, Applewood Bacon and Foie Gras... On the side was Duck Fat French Fries with a Sly Fox-Chedder Cheese sauce and a Black and white milkshake.

It also had a huge list of whiskey and a beer in a hand pump (Which I have only ever seen at Standard Tap. Now this made me want to try the Whiskeys and beer, but alas my medicine keep me from those which I love. I will go back when I am done and start at one end of the Whiskey Menu and work my way to the other (Kind of like what I do at Monks).

I will update later when I have more medical info, but I wanted to thank everyone who has given me a moment of happiness recently. You have no idea what it means to me. Although I would never hurt myself, it has given me that little bump I needed to get out of bed in the morning. So Thank you for everything...

Slainte.

Some days you are the face getting punched...

I don't remember what happened since the last post...

So I remember the extraordinary pain after the Spinal tap that lasted four days. I called the doctor and they told me to go to "the hospital". Now when someone tells you to go to "the" Hospital, you would think to go to the hospital that you had the procedure at? I did and boy was I wrong. I arrived at the hospital and the registration desk had no idea about me. They wanted me to go to a hospital 20 miles away. Instead of just going to the other hospital they told me to stay where I sat in the waiting room with what appeared to be a man with either a fried brain from too many drugs or a traumatic brain injury who did not want to go to surgery. I thought I was going to have to act when he started to freak out and they cleared the waiting room. I did not trust any of the doctors or security guards to have the experience in wrestling a crazy person... unfortunately I do all too well. So three hours sitting around in pain, a doctor tells me I am not a candidate for a blood patch. Had I come in over the weekend they would have done it but I waited until the weekday and some of the pain had gone away. I was sent home and told to lay down. Advice I was doing on my own before I was told to go wait in a germ infested waiting room...

So was I surprised when I get a sore throat and sinus infection for two weeks.

I will fast forward to today. The seizure medicine I am on where it took me a month to get up to 50mg... Now I am going up to 400mg within the next month. Now this is a medication is one where I have to step up slowly  or it may cause painful blisters in my mouth (which I was told go to emergency room immediately). It also may cause aseptic meningitis (hopefully it does not. I do not want another spinal tap).

At the end of this month if the medicine (which I was told has a 50% failure rate, for a condition they don't know that I have...) so I don't know how effective it will be. The next step is hospitalization... and several different treatments, one of which involved Ketamine... now from what I know of Ketamine it basically puts me out for several days. Happy days. I hate medicine, especially pain meds. My last two surgeries I did not take any of the pain meds they prescribed to me, that is how much I dislike pain meds. Right now to get rid of all the problems I have I will go to a witch doctor if they could help.

On a brighter note this weekend I may go to a Buddhist meditation. I figure I need something to make myself feel better. I need some sort of Spiritual healing because of how horrible I feel. I would rather that then a Psychologist who is just going to tell me what I already know. I am depressed because I am out of work, I am lonely at my parents house and rarely see anyone. I sleep in a single bed rather than my comfy hand made queen bed.

I do appreciate everyone who has helped me out, who have come to see me, take me out to lunch, movie or party. Those days away from this room are precious to me because they are my only outlet to the real world. I appreciate the sympathetic ears.

I am just in a bad place right now and hate life every day I wake up with hope that I am better and nothing has changed. So I am going to try some Spiritual enlightenment.

I am sorry this one is not as funny or filled with movie quotes. I just needed to vent. I am not in the right mood. Guess I am just further down than normal.

Thank you for listening, you don't have to. You could be anywhere else in the world and you are here... I appreciate it.

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...