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...

You can not fight I don't know...

Another doctor with another maybe, let's see what this test says...

     Today was the MS doctor, and he gave me another I don't know.

    I can't fight I don't know... I can fight cancer... I can fight MS... I can fight six months to live, kick it's ass and show it I am the most stubborn son of bitch that the disease has ever met... just ask my ex girlfriends. They probably would agree.

     I hate that getting an appointment anywhere is over two months away. I am willing to go anywhere for this... willing to do anything to get them done earlier. I just want to get back to life rather than living in limbo.

     My frustration is growing and I hate life every day. I hate looking at the pain in my parents eyes every time I leave a doctor's office. I hate coming home after the appointment with no answer. It makes me want to just leave. If I could walk more than a mile, I would walk and walk and walk and just walk off into the sunset and disappear into the landscape. No where to go just leave and save everyone else the heart and headaches... (at least then my sister would be able to pay off her school loans).

     Now to clarify I don't want to hurt myself or kill myself. I just want to fade away. I have gotten myself into such a state where I can't get angry... I can't cry even though I feel hopeless in this.

     I was a strong charming man. I was doing P90X, I could run for ever and drop and push out 50 push ups with relative ease. No walking a mile is rough. My legs are so weak and my hands shake. I can barely hold a pen in my hand.

     I saw three beautiful women today that two of which I could have had a change to talk with and be my old charming self and all I could think in my head is... Hi I'm Dante (my pseudonym), I am not working right now because I am disabled, and my job will probably drop me in another six months if I can't get healthy and I have no future right now... How are you?

     Pathetic. just how I feel. But I still can't cry or get angry. I seem to be the robot that one of my ex called me. I just sit staring  at the wall and seeing my hallucinations. Wondering when it will all stop.

     I have not hit rock bottom yet, but my head is well below the water. It is the first time that has happened. Usually my head was right at the water line, my face just peaking out enough to breath. Today I can not even see the surface. I could not even tell you where that surface is or the direction in which to travel.

     I know the Japanese proverb Fall down Seven Times Get up Eight. No matter how many times you are down you have to get back up. Rocky one of my favorite movies taught me that when I was young. Maybe the fight isn't over yet Tommy... but standing up on weak legs is getting harder to do. I will always try to get up, no matter how hard it is... I will swing at nothing, hoping to hit nothing.

It's only after we've lost everything that we're free to do anything... Fight Club quote that I guess will get me through my day... If I do hit bottom maybe I will be free... I can only hope... If I have any left.

When you are tired of hearing I don't know... continued

Ok now I ate... and ready to continue.

     Now about a week or two after the break up, the ED was gone because the medicine was different. Not better but different. I still felt awful, I had trouble with sleeping, I was never hungry and I felt like a zombie. I was at a friend's house one night (one of only a few that I get out of the house other than to walk at the park) sitting around a fire and just talking... I went inside of the house and black lines took over my vision. I was effectively blind for approximately five to ten minutes. Which was different from the every day every minute of every day, so I was concerned about that... Two weeks later the smoke detector went off and as I was running downstairs my entire vision went green, then more black lines taking over my vision and I was blind again.

     I went to Neurologist #2 and told him that nothing had changed for the better and had two blind episodes after a very strong dose of the Topamax did not work, put me on a new medication Nortripaline.  Which is a form of anti depressant that is supposed to help with migraines (at this time I have only had two normal headaches in four months, but they still believed it was Optic Migraines).

     I went back to Neurologist #1 who consulted on what medicines I was taking and related that she did not know what was wrong at this point. N1 gave me referrals to cardiologist, rheumatologist, headache center, and sleep center. N1 wished me luck and wanted to be kept in the loop about all of my follow ups.

     My family doctor saw me again and wanted me to see an MS specialist (I have that appointment tomorrow). He has been following up on all of my appointments and trying to figure out what to do. He believes it is an autoimmune disease because a family member of mine has a very rare one and it would be even more rare that no one else in the family had one.

     I then went to a headache specialist who put me on yet another medication... This one I think is called verapamil another migraine medication. Yet again no change in my vision, hallucinations or disturbances.

     Two weeks ago I went to see my N2. Who greeted me at the door and said How is the enigma today? At least he is honest when he said he has no idea what to do. I had taken high doses of several different medicines. He wished me luck and told me I am seeing the best headache specialists in the country and that on the bright side I may have a disease named after me one day...

     Next was a cardiologist who is just ordering a couple more tests, but said he was probably going to be unable to help me out... Next was a Rheumatologist, who took some more blood (by now I have had blood drawn four or five times... it gets confusing), but he had no idea what was going on with me and was not in his realm.

     A family member of mine works in a hospital and their protocol is when a neurologist can not diagnose they send them to an infectious disease doctor. Luckily I have a friend who married one, so I was able to talk with him on the phone, before the appointment... so it may save me from getting two spinal taps (But it goes to 11). So I will make that appointment tomorrow and probably go this week.

     So to sum it all up. I have so many doctors that I can not keep them straight. I have more appointments in the future with doctors I have probably forgot and nothing has changed. I still have movement all around me that is not there. It always seems like there is something off to the side of me moving around. I have flashes of light... to me it always feels like its lightning out or someone is always taking pictures. Then there are the colored lights... green, red, blue all over my vision. When I look at the computer screen there are star bursts all over it. It also happens when I read a book, or stare at the wall. It feels like Independence day all the time (not the movie the holiday).

     I would like this to be over. I thought when they told me optic migraines two or three weeks of medicine and I would be back to new. I was not expecting the trembling hands, the weakness in the legs, or the fatigue I feel every day... I just want to be ... better, normal or I don't know... Just not this anymore.