There have been good times, and bad...dark and light. But for the sake of trying to be therapeutic I will stick to what I am doing at this very moment. Today I reapplied for disability, I also contacted an SSDI atorney, I talked to a few friends and took my meds and made some awesome smoothies. I put magnesium and vitamin C in them to make sure I am getting some nutrients during my wisdom teeth healing process. It hurt like hell and was a bit rushed. but I got it done. I also got interviewed today for the OC weekly about my fundraiser. I am so blessed an touched that people are willing to go out of their way to help me so much. It was hard to relive some of the moments I have gone through with this disease. Talking about the nights I laid awake in tears from pain were hard to remember. It feels like yesterday, but still so far away. I know now that I need to stay in the moment and not think about anything else. I need to get serious and stand up on my own two feet and make a stake for my life. This is no longer a game, but a real situation that could turn nasty.
So I am back at my Moms house...its a lot nicer than east LA. My wisdom teeth are gone and are still causing lots of pain and numbness in my body. Who wouldn't freak out if half your body went numb all the time...I cant even feel my left hand that well right now, hahaha. Crazy stuff. I played bass for 20 minutes today, but it always seems to creep up on me and bite me back in the ass when I stop. Now my left arm is killing me...o well. It was fun while it lasted.
I also hit a thousand dollars in my fundairser!!! Its only been a week and a half. pretty awesome. Thanks guys!
My father is very religious, and I am now staying with him for a little while. I was baptized Catholic and went to Catholic school, I was an alter boy, and I did the whole bit. But there have been so many things I got wrong. I did not have faith in God, or in others. Now I am coming to find that truly no man is an island and no one can do it on their own. I know successful people who are rich, and are CEO's, Music stars, etc etc...and some of them made it there on their own, some are happy and others aren't.
Tuesday, July 26, 2011
Wednesday, July 20, 2011
Living with it, not dying from it
I just had my wisdom teeth pulled out yesterday. I was so nervous during the whole procedure. I was scared of infection, scared of pain, scared of this or that. My life has been run by this fear, a fear that paralyzes. I don't know what happened to me during this last month to make things go so bad, but I want to change. A certain point comes where I feel good, then bad, then good, then bad, then worse. Also my brain has started to diminish a bit,but thats ok. I guess the point I am trying to make is that I get angry. I get so angry that this happened, and I pray and hope and wish that my life could return to what it once was, but I have to learn to be ok with what I am now. A friend told me that I would make it, I just had to think of this as my baseline right now. Come to think of it that time I was laying in my bed crying from such horrible back pain that I didnt know where it came from, and was barely touched by 2 percocets. I am glad I have the support of people around me, but it still gets discouraging. When the mind races it can run you....I am tired and need to brush my teeth. hope tmorrow will be pain free too. The thing to do now is live with my disease, not let it ruin me.
Thursday, July 14, 2011
Don't know you got till its gone
This past month has been one hell of a whirlwind. I got sick with food poisoning at some Chinese run sushi place. After the initial shock and stomach upset I was thrown into a hole. Over the next few weeks I had to start and stop medication, go to the ER 3 or 4 times, run multiple blood tests, and still everything was normal. My stomach sitll has not recovered and I have lost 15 lbs since June. What a crazy thing to happen, I was just ready to start getting back to normal...and going around. My immune system has been in the trash so I am getting sick if I eat out. rough stuff, but I am still trying to find some light. A good friend of mine who is fighting chronic illness for decades now has been my guide to this new world. There is lots of bleakness in this affair, and with no money or resources and a shoddy treatment plan it gives me even less hope. She is so bad ass and resilient to a lot of BS and all the pain and suffering, but even then we are all human. She told me, "It just isn't fair, but it is not my place to know why this happened. But damn it it is not fair."
We can be 2 different kinds of people when dealing with tragedy and I have been both but tend to stick to one side more. The woe is me card is one that is easy to play. No one has a reason for the pain and heartache that sickness or tragedy brings to peoples lives, but sitting around asking will not solve anything. Although it is so easy to do. And then there are the people who are cool even when they are dying. You get to a point where you have to resolve yourself to death. Where if you do not make it, its ok. There is no more struggle and fighting. It will be over, you don't wish for it but you don't try and resist it. It is a strange feeling. Many times sitting on the ER bed I have thought that it was time, and I was ok with it. I admire the people who can say screw it and just be in the moment. Because when it comes to living with this shit you can only live minute by minute.
I also started a fund raiser and already got some money! It is a good day today. Hope everything works out. I never knew I had so many people who cared about me.
We can be 2 different kinds of people when dealing with tragedy and I have been both but tend to stick to one side more. The woe is me card is one that is easy to play. No one has a reason for the pain and heartache that sickness or tragedy brings to peoples lives, but sitting around asking will not solve anything. Although it is so easy to do. And then there are the people who are cool even when they are dying. You get to a point where you have to resolve yourself to death. Where if you do not make it, its ok. There is no more struggle and fighting. It will be over, you don't wish for it but you don't try and resist it. It is a strange feeling. Many times sitting on the ER bed I have thought that it was time, and I was ok with it. I admire the people who can say screw it and just be in the moment. Because when it comes to living with this shit you can only live minute by minute.
I also started a fund raiser and already got some money! It is a good day today. Hope everything works out. I never knew I had so many people who cared about me.
Tuesday, May 24, 2011
Yea yea...What's for lunch?
Before the experience of becoming chronically ill happened I never thought about my health a lot. I imagined that one day I would grow to be an old man and reminisce about whatever feat I had accomplished in my youth. I thought about my health...but not beyond the physical or obvious aspects. I watched what I ate, exercised, and tried to not drink or smoke too much. But I never thought about anyone else's health either. I would simply wake up and go about my day...in my own world where the dreams and ambitions were bounded only by my determination. That was until I got Lyme disease...
The initial symptoms of joint pain and fatigue seemed all to common. I thought nothing of it. It was not until the nerve pain set in that kept me up for nights in tears and anguish, wondering why this was happening? A pinched nerve? In my arm? Ok...I practiced my instrument a lot...maybe...but then the right arm? Then my leg? pinched nerves all over my body? All with no answers...Not even a speculation, just a wait and see...I will never forget the day when it hurt too much. When the act of bending my arm to brush my teeth was far too painful to stand, or the car ride to the subway where once I got my food I could not lift up to my mouth...so I just shoved my face into the food. Those memories seem like a dream, or nightmare for that matter. Usually people would always say "It's not that bad, it won't be the worse thing ever, that only happens to a small few....you will be ok." I heard that a thousand times...and I kept losing faith in it more and more each time I heard it. I will never forget that day, or the months after. The hospitalizations, the pain, the anguish, tears, fear, suicidal thoughts, the experience of losing my mind, being fed, being bathed, becoming a shell of myself. Laying on the hospital bed wondering if I was dying...what had I done? What can I do? What will happen? What haven't I done? Even resolving myself to death. This was ,my introduction into the world...my journey down the rabbit hole. The world of the chronically ill.
I had never been into a doctors office and been told "I don't know" before...let alone mis or undiagnosed. Little did I know that there are hundreds of thousands of people who live in this world. A world where their body is no longer a vessel for their actions and minds, but a prison. A prison that confines you to an endless array of pain and torture. To put it bluntly your body never shuts up. It always talks to you, screaming pain, numbness, tingling, anxiety, noise, dischord, and depersonalization. There is no peace, your piece has been forever shattered. You think about the days when you woke up and just thought about your next move...That is the world you leave when you journey down the rabbit hole. It is unfortunate that not everyone can understand what it means to do this. The world would be a better place if they did. But who am I to criticize? I never thought about cancer patients, MS patients, or others...I thought about the poor, the hungry, and I knew there were sick people, but they never crossed my mind.
But now it is different...I took the red pill and I am on the journey, and this hole is fucking deep. A world where people are ill for life, where they can never attain what they want for themselves, are in a constant struggle just to be. I thought I knew what hardship was, keyword thought. A world where everything is a business and everyone is a profit. Doctors are no more than pill pushers manipulated by big pharma, medical researched is skewed by who supplies the funding so that insurance companies and the like do not have to pay for treatments that are too expensive, potential cures or life saving treatments are buried because they hold no potential for profit. We are talking about medicine right? Even the insurance companies, the doctors, the drug reps....they get sick too right? They get cancer, HIV, Lyme, MS, Azlheimer's, Hepatitis C....so why do they contribute to the mess? I can answer...arrogance...They simply think they will be invincible. I once thought this way as well....why wouldn't you? No one suspects it will happen to them....but illness does not discriminate, and people will pay for the choices they make in the health care business. But since learning this truth...this great injustice in society and crime against humanity, I feel a responsibility to scream it to the skies, let everyone on earth know the evil that goes on in front of their eyes, that could happen to them, that they can help change....But no, they don't what to hear it. They simply say "Yea yea...what's for lunch?"
It is sad that the only way for most people to understand something is to go through it themselves.
The initial symptoms of joint pain and fatigue seemed all to common. I thought nothing of it. It was not until the nerve pain set in that kept me up for nights in tears and anguish, wondering why this was happening? A pinched nerve? In my arm? Ok...I practiced my instrument a lot...maybe...but then the right arm? Then my leg? pinched nerves all over my body? All with no answers...Not even a speculation, just a wait and see...I will never forget the day when it hurt too much. When the act of bending my arm to brush my teeth was far too painful to stand, or the car ride to the subway where once I got my food I could not lift up to my mouth...so I just shoved my face into the food. Those memories seem like a dream, or nightmare for that matter. Usually people would always say "It's not that bad, it won't be the worse thing ever, that only happens to a small few....you will be ok." I heard that a thousand times...and I kept losing faith in it more and more each time I heard it. I will never forget that day, or the months after. The hospitalizations, the pain, the anguish, tears, fear, suicidal thoughts, the experience of losing my mind, being fed, being bathed, becoming a shell of myself. Laying on the hospital bed wondering if I was dying...what had I done? What can I do? What will happen? What haven't I done? Even resolving myself to death. This was ,my introduction into the world...my journey down the rabbit hole. The world of the chronically ill.
I had never been into a doctors office and been told "I don't know" before...let alone mis or undiagnosed. Little did I know that there are hundreds of thousands of people who live in this world. A world where their body is no longer a vessel for their actions and minds, but a prison. A prison that confines you to an endless array of pain and torture. To put it bluntly your body never shuts up. It always talks to you, screaming pain, numbness, tingling, anxiety, noise, dischord, and depersonalization. There is no peace, your piece has been forever shattered. You think about the days when you woke up and just thought about your next move...That is the world you leave when you journey down the rabbit hole. It is unfortunate that not everyone can understand what it means to do this. The world would be a better place if they did. But who am I to criticize? I never thought about cancer patients, MS patients, or others...I thought about the poor, the hungry, and I knew there were sick people, but they never crossed my mind.
But now it is different...I took the red pill and I am on the journey, and this hole is fucking deep. A world where people are ill for life, where they can never attain what they want for themselves, are in a constant struggle just to be. I thought I knew what hardship was, keyword thought. A world where everything is a business and everyone is a profit. Doctors are no more than pill pushers manipulated by big pharma, medical researched is skewed by who supplies the funding so that insurance companies and the like do not have to pay for treatments that are too expensive, potential cures or life saving treatments are buried because they hold no potential for profit. We are talking about medicine right? Even the insurance companies, the doctors, the drug reps....they get sick too right? They get cancer, HIV, Lyme, MS, Azlheimer's, Hepatitis C....so why do they contribute to the mess? I can answer...arrogance...They simply think they will be invincible. I once thought this way as well....why wouldn't you? No one suspects it will happen to them....but illness does not discriminate, and people will pay for the choices they make in the health care business. But since learning this truth...this great injustice in society and crime against humanity, I feel a responsibility to scream it to the skies, let everyone on earth know the evil that goes on in front of their eyes, that could happen to them, that they can help change....But no, they don't what to hear it. They simply say "Yea yea...what's for lunch?"
It is sad that the only way for most people to understand something is to go through it themselves.
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