Taking back my health and life

I know it has been a while since I last wrote...

I have spent the time telling family in person about what is going on with me... Unfortunately I have been unable to talk with everyone in person. I have tried but they were away the last few times I was visiting my parents. For that I apologize and I intend to sit down and talk with you soon.

So this will be my first public posting... the last ones were all anonymous because I was hoping that my affliction would be fixed before anyone had to know, but if you have read from the beginning it is not happening.

So here I am, exposing myself to everyone... not literally... at least not this time. If you have not read the rest, just go back to the beginning. 

To start off with latest results.

Thomas Jefferson told me that they were out of medical options. None of the medicines they gave me have put a dent into my problems, so I was given a script and told to go see a psychiatrist, not because I am crazy, but because it will give me coping mechanisms to get through the depression I have been suffering.

Upenn also told me they are out of options, but will continue with getting MRIs every so often to check if anything has degrading my brain or spine. I was also given a script to see a Psychiatrist and also told it was not because they think I am crazy... One of the medications I was on was an Anti psychotic anyway in the middle of all this... So I hope that I am not immune to all medications.

So next may be John's Hopkins, Mayo Clinic or NIH. I am not going to give up... I will find someone to help me or I will die trying in a few 60 years or so... Maybe I should find a witch doctor or Herbal remedy...

Now to today. I am trying to take back my health. I have been in horrible physical shape. There were times I was barely able to walk a mile. I get done work... which is not that taxing... and I come home and need a nap. It takes all I have not to fall asleep for half the day. I am battling the fatigue I feel every day. Trying to live a normal life.

When I moved back home, I bought a road bike, and signed up for the gym. I went to the gym for the first several weeks, but have fallen off because of both me and my cousin not feeling well. I did enjoy going for a swim there and will continue to.

The Road bike is another matter. I have taken it out a few times and I am getting longer rides in. It is good exercise on a nice day. I plan on doing a 150 (or 175) Mile ride in September, a ride for MS from Philly to Ocean City and back. I figured it would be a good event to train for... I need to look forward to something, to train for... and I will be raising money for a good cause. And anyone who wants to

So today brings me to my next step... Something I can start at home and work on. I bought Insanity... If you do not know what it is, it is a DVD work out program. I have been eating too much junk food in the attempt to make myself feel better. So I have to put down the Reece's Peanut Butter Cups and eat more veggies and fruits. So I want people to get on my case to keep with this work out program. I want to finish it... in about the 60 days that it should take... If I miss a few then that is ok. I will make it up somewhere down the line. My goal is within 75, with a few long bike rides, kayaking, and swimming in the middle... 

Wish me luck... and kick my butt if I start slacking off.

I have come to a cross roads and I do not know which way to go...

I have always enjoyed the poem from Robert Frost...
The road not taken.

Two roads diverged in a yellow wood,
and sorry I could not travel both
and be one traveler long I stood
and looked down one as far as I could
To where it bent in the undergrowth:

Then took the other, as just as fair,
and having perhaps the better claim
because it was grassy and wanted wear
though as for the passing there
had worn them really about the same

And both that morning equally lay
in leaves no step had trodden black
oh, I kept the first for another day!
yet knowing how way leads on to way,
i doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I --
I took the one less traveled by
and that has made all the difference.

I would like to think that most of my life's decisions I have stood at that precipice (not just because I have fallen off two cliffs) and taken the road less traveled. It was not always for good, but I stand by my choices.

I have been conflicted for the past year now. It is over a full year since I became afflicted with my current state. A disease, a condition, a whatever you want to call it. Just over a year ago It hit me full on and I tried to hide it from everyone. This was difficult because I am close to my family and friends. I try to internalize everything. While the, we will call it a condition for now, condition has been with me for nearly three years off and on, only a year ago was when it started to interfere with daily life.

Since the last writing, I have gone back to work.

It feels great to be there, to have the socialization and feel somewhat productive. But at the same time it is quite humiliating. I feel emasculated. I watch others perform the job that I strove so hard to obtain and spent years working and I can not do it.

I know the reason why I can not do it is for the safety of everyone. If some harm came to me I can handle that, but if someone else came to harm because of my, condition, I would never be able to forgive myself.

So I am torn between wanting to be productive and being emasculated... again there is that diverge. So I chose to be emasculated every day rather than sit at home and do nothing... I am strong enough to let it roll off my back and take the humiliation. No matter how strong I am, it still makes me sad and down.

I have tried the ketamine again twice at home and absolutely hate it. I feel lost, confused, paranoid and angry while on it. I have to see if the ground is beneath me while I walk. I look into a mirror and do not recognize myself. Everyone looks just a bit off and when they talk it seems as though they were poorly dubbed from a Japanese Samurai movie. I do not want to take it ever again.

I do feel quite lonely at night though. While I am at work I do have some interaction with people, but it is mostly stupid stuff or them asking how I am feeling and what I am going through. It gets old explaining everything over and over again. After I am dropped off at home from work (because I can not drive) I sit there and do nothing. I know almost no one in the area, so I have no friends around and no way to get to my friend's house even if I did, and most of them have so much going on in their lives with family, work and such I hate to bother them.

I live in the middle of no where, with no public transit to speak of. I bought myself a road bike (Bicycle not motorcycle... that would just make me an organ donor sooner), but with all of the medicine I have been on my stamina is horrible (especially on hills). I am slowly getting back into shape.

I think I need some hobbies. I d like to learn how to cook more. Create a meal plan for the week, get all my mise en place (I think that is right) together and cook. I have been looking at stand mixers so I can bake my own breads and such.

I m starting off with the bike and working towards other hobbies. If anyone has any suggestions for someone who has visual disturbances, temporary blindness, not allowed to drive, and has fatigue... it would be helpful.

I guess my next posting will be my decision on telling everyone, instead of writing this anonymously

Wish me luck

I'm Gonna Be Sedated

My tribute to the Ramones...

Twenty-Twenty-Twenty four hours to go I'm gonna be sedated
Nothin' to do and no where to go-o-oh I'm gonna be sedated
Just get me to the airport put me on a plane
Hurry Hurry Hurry before I go insane
I can't control my fingers I can't control my brain
oh no no no no nooooo
Ba-ba bamp ba ba ba ba bamp ba I'm gonna be sedated

Last time it was stone free, this time Sedated. So It has been a little bit since I last posted to here. Not much good news and very little news at all. I posted around Thanksgiving, after that December was kind of slow. No doctor's appointments, nothing of note. It was the first month since April that I was not on any medication, and I had no invasive tests.

The new year came and I was put on a machine to keep me breathing during the night. I apparently stop breathing 22 times an hour. The good thing about this machine is I do not sleep, so I effectively keeps me breathing. The downside is that I do not sleep, so I do not know if it is helping all that much.

But that is the least of my worries at this point. Tomorrow as per my Ramones Tribute I will be Sedated for a week. The Doctor who is scheduling this is hard to understand at times being from Spain and having an accent. She described it to me as not quite a coma, but I will be out of it. The sedation will be with Ketamine, a powerful horse tranquilizer... all of you Club kids are jealous? I will be sans glow stick, stupid dancing and Blade soundtrack though.

Now I am doing this because it is a drastic step in my treatment options. It was described as a chance to reset my brain and put it back to factory settings (for all of your computer nerds). Somehow, someway, something is jumping on my neural optic nerve (if there is such a thing) and causing these flashes. I have been told by doctors it is hard to understand what is going on in the brain and this treatment is one hope to get it fixed. Ketamine is used for people with severe pain (which I do not have physically but they believe the pain is being manifested as lights, shadows and colors in my field of vision). There are follow up treatments after that. I will know more tomorrow. I basically know nothing right now about this treatment other than I am to report to the hospital tomorrow at 10 am and everything will be explained then.

I will be incommunicado for approximately a week. If those of you who know me personally want to contact me, cell phone is probably the best bet. If I can not check it I will have a family member going through and giving updates if there are any. Please do not post anything on Facebook... I write things here so they stay private from my life. This is where I rant and I pick and choose who I want to read said rants. I thank you in advance to helping me with my anonymity.

When I get out I will write out my experiences here, if I have any. If I get put out and a week later am woken up with nothing to experience will I be able to write anything? We shall see...

Thank you all for reading this and if anyone is stumbling upon this because you have similar issues know that you are not alone.

I appreciate all of the kind words and support I gain from everyone in my life. While I put on a brave face most days and just plug along saying everything happens for a reason... Sometimes I am still scared when I go blind or have the Pink Floyd laser light show going on inside my eye lids when I try to sleep. I really do want to be normal (or as normal as I can be... or used to be rather). Most of you know I find it difficult to talk with. I tend to listen more than speak, so thank you for everything.

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.

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).