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.
Monday, August 29, 2011
Sunday, August 28, 2011
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.
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.
Medical Mystery
I should have started this earlier...
To this date I have nine doctors... but that is getting ahead of myself, so... Let me splain... No there is too much Let me sum up. (a little humor for you movie fans).
Two years ago I started to see lights out of no where. It would be just a little blink of colored light, sort of like if your cell phone had a message light blinking. I would look and my cell phone would not be there or it would be upside down so you could not see the light. Next I noticed movement in my peripheral vision. It always looked like someone was walking up the steps of my apartment or by my window. I would look and no one would be there. I did not actually see people I just saw a quick movement out of the corner of my eyes. This was once in a while so I did not think about it much. I worked a lot of hours, I did not sleep much, I was under a moderate amount of stress (but no more than normal), and I ate horribly. Any one of those excuses I chalked it up to, so I ignored it.
Now five months ago for whatever unknown reason it started happening all the time. First I was noticing objects every time I drove, it looked as though something (no Discernible shapes or objects... just I thought something was coming into the road). I would swerve to avoid whatever it was and then look into my rear view mirror, nothing would be there. That happened for a few weeks and I chalked it up to working a lot, not eating right and not sleeping.
One night I was trying to sleep between two shifts I was laying in bed, with no lights on, shades down and on the one wall I saw a light on the wall, and the only way I can describe it is as bright as magnesium flashing. I looked over at it and looked away then it flashed again. With no way for the light to come from somewhere else I got worried. I made an appointment with my family doctor. He gave me some medicine that I took the maximum dosage of for a week. I was at work and it did not work. I was standing in front of my parked car and out of the corner of my eye it looked like the car was rolling towards me. I turned and went to put it in park... the car had not moved. I turned away and it looked like it had moved again. I had one more incident while at work that was ... dangerous (I will leave it at that). I went and took off the next two days to give myself a week off and found a neurologist because the medicine did not work.
I went to the first neurologist, who put me on medicine, told me that I could not go to work (and have been using my vacation days ever since). The neurologist wanted to see me in three months. I started the two medicines and they made me feel horrible. Propanolol, after two weeks of taking it, I felt worse... I called my neurologist who was away and they put me through to a back up doctor. He was rude and started to yell at me on the phone. I have never spoke to someone the way he spoke to me. He told me if I felt that bad to go to the emergency room rather than have me come into the office. On top of the visual anomalies I was getting eye piercing headaches, so I went to the emergency room at U of Penn Hospital. There I got a CTscan and they gave me news that I do not have a tumor (which at that point was good news since I was fighting to get the MRI, MRA and MRV that was requested by my neurologist. Insurance needed prerequisite and it was not submitted by the doctor's office).
I was unhappy with the side effects of the medicine and how I was feeling. I became weak all of a sudden. I had always been in good shape, able to sprint, push ups, sit ups, and I was working on P-90X. All of a sudden a walk around the park exhausted me. I had ED (which is embarrassing enough) from the medicine and everything just started to go downhill from there. I was expecting the medicine to work and after several weeks it had only felt worse. My family doctor gave me more medication for seizures just in case that was the cause (it has run in my family).
I started to see a second neurologist because I had such a hard time getting a hold of the first. He started me off on a higher dosage of the medication that my family doctor put me on. It was supposed to help seizures and optic migraines (Topamax). Now the nickname for that medicine is Dopamax. I stopped eating because I did not feel hungry and I was still feeling worse than when I started. My legs were feeling weaker where it hurt to take steps more than one at a time and I have to make sure I hold onto the railing and wall for support. My hands started to tremble and continue to. At this point my relationship with my girlfriend deteriorated. She was a good sport about me not being able to drive, not working and just feeling horrible all the time. I don't blame her for wanting to go, I was sick, whatever is wrong with me was bothering me and the meds were bothering me ontop of everything else. I guess best to leave early and it only hurt a little than stick around and hurt more...
To be continued... I am tired of writing.
To this date I have nine doctors... but that is getting ahead of myself, so... Let me splain... No there is too much Let me sum up. (a little humor for you movie fans).
Two years ago I started to see lights out of no where. It would be just a little blink of colored light, sort of like if your cell phone had a message light blinking. I would look and my cell phone would not be there or it would be upside down so you could not see the light. Next I noticed movement in my peripheral vision. It always looked like someone was walking up the steps of my apartment or by my window. I would look and no one would be there. I did not actually see people I just saw a quick movement out of the corner of my eyes. This was once in a while so I did not think about it much. I worked a lot of hours, I did not sleep much, I was under a moderate amount of stress (but no more than normal), and I ate horribly. Any one of those excuses I chalked it up to, so I ignored it.
Now five months ago for whatever unknown reason it started happening all the time. First I was noticing objects every time I drove, it looked as though something (no Discernible shapes or objects... just I thought something was coming into the road). I would swerve to avoid whatever it was and then look into my rear view mirror, nothing would be there. That happened for a few weeks and I chalked it up to working a lot, not eating right and not sleeping.
One night I was trying to sleep between two shifts I was laying in bed, with no lights on, shades down and on the one wall I saw a light on the wall, and the only way I can describe it is as bright as magnesium flashing. I looked over at it and looked away then it flashed again. With no way for the light to come from somewhere else I got worried. I made an appointment with my family doctor. He gave me some medicine that I took the maximum dosage of for a week. I was at work and it did not work. I was standing in front of my parked car and out of the corner of my eye it looked like the car was rolling towards me. I turned and went to put it in park... the car had not moved. I turned away and it looked like it had moved again. I had one more incident while at work that was ... dangerous (I will leave it at that). I went and took off the next two days to give myself a week off and found a neurologist because the medicine did not work.
I went to the first neurologist, who put me on medicine, told me that I could not go to work (and have been using my vacation days ever since). The neurologist wanted to see me in three months. I started the two medicines and they made me feel horrible. Propanolol, after two weeks of taking it, I felt worse... I called my neurologist who was away and they put me through to a back up doctor. He was rude and started to yell at me on the phone. I have never spoke to someone the way he spoke to me. He told me if I felt that bad to go to the emergency room rather than have me come into the office. On top of the visual anomalies I was getting eye piercing headaches, so I went to the emergency room at U of Penn Hospital. There I got a CTscan and they gave me news that I do not have a tumor (which at that point was good news since I was fighting to get the MRI, MRA and MRV that was requested by my neurologist. Insurance needed prerequisite and it was not submitted by the doctor's office).
I was unhappy with the side effects of the medicine and how I was feeling. I became weak all of a sudden. I had always been in good shape, able to sprint, push ups, sit ups, and I was working on P-90X. All of a sudden a walk around the park exhausted me. I had ED (which is embarrassing enough) from the medicine and everything just started to go downhill from there. I was expecting the medicine to work and after several weeks it had only felt worse. My family doctor gave me more medication for seizures just in case that was the cause (it has run in my family).
I started to see a second neurologist because I had such a hard time getting a hold of the first. He started me off on a higher dosage of the medication that my family doctor put me on. It was supposed to help seizures and optic migraines (Topamax). Now the nickname for that medicine is Dopamax. I stopped eating because I did not feel hungry and I was still feeling worse than when I started. My legs were feeling weaker where it hurt to take steps more than one at a time and I have to make sure I hold onto the railing and wall for support. My hands started to tremble and continue to. At this point my relationship with my girlfriend deteriorated. She was a good sport about me not being able to drive, not working and just feeling horrible all the time. I don't blame her for wanting to go, I was sick, whatever is wrong with me was bothering me and the meds were bothering me ontop of everything else. I guess best to leave early and it only hurt a little than stick around and hurt more...
To be continued... I am tired of writing.
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