I have been receiving substandard, medical care through my HMO. Medi Cal only offers medical coverage through HMOS, who refuse to write brand medications. I have chronic urinary tract infections that require frequent antibiotics. The HMO will only prescribe generic medications, even after I and another of my doctors concur that it makes me violently ill. Because I have severe physical limitations, I require more time intensive care for which the HMO refuses to give to me. I have suffered cruel indifference to my special needs, when in the hospital and in the doctor’s office. I am so afraid that the HMO will hurt me, that I went into Social Security and cancelled my Medi Cal, as I cannot have individual Medical Insurance, and Medi Cal at the same time. I did not cancel my SSI, they took it away and told me that Medi Cal went hand in hand with SSI. I had my annual review with IHSS. I informed my Social Worker, that I no longer receive Medi Cal. My Social Worker informed me that IHSS is contingent on receiving Medi Cal, therefore, I no longer qualify for the program. I had two choices. Stay with the HMO and be forced to take generic medications, that make me violently ill, or leave. I had to leave. When I was in the hospital for kidney stones, the nurse told me to defecate on myself in the bed, because there wasn’t a lift team or a hoyer lift available. The emergency room doctors were overriding my generic medication to brand name medication, and one day, the director of the hospital, Dr. Balkian, said that under no circumstances will he right brand medication now, or in the future. My health and well being, and, confidence in the HMO was gone, replaced with fear I have gone through a plethora of appeals and disputes, phone hearings, and in person hearings. After two years of trying to get a fair decision, it was obvious to me that the dispute system is fake, and is only there to pretend to go through the motions. I had to leave, and consequentially, lost my benefits. If you would like to make contributions click the link below.
Although I may be limited, I have many joys and talents, as well as, lots of potential.
You wonder how much I am aware of, I see that as well.
I am aware of much, whether you are happy or sad, or fearful.
Patient, or impatient, full of love and desire, or if you are just doing your duty where I am concerned.
I marvel at your frustrations, knowing mine to be far greater, as I cannot speak as clearly, sometimes, hesitate, or lose my train of thought altogether.
You cannot conceive of my isolation, so complete it is, at times.
I do not gift you with clever conversation, or cute remarks to be laughed over, and repeated.
I do not give you answers to your everyday questions, or a response about my well-being, share my needs or comments about the world around me.
I do not give you rewards, as defined by the world’s standards, or great strides in development that you can credit yourself for.
I do not give you understanding, as you know it.
What I give you is so much more valuable. I give you instead, opportunities to discover the depth of your character, not mine.
The depth of your love, your commitment, your patience, and your abilities.
The opportunity to explore your spirit more deeply than you ever imagined possible.
I drive you further than you will ever go on your own, seeking answers to your many questions, creating questions with no answers.
I am the shadow you easily pass by.
You are a shadow, that passes by me.
You see the longing in my eyes, to get out of this chair, to stand up like others.
There is much you take for granted. I want the item at the store, but it is on the top shelf, out of my reach, but just a little stretch for you,
I want to go to the bathroom myself, in privacy.
I would like to pick up a spoon and feed myself breakfast, maybe make your breakfast sometimes.
I am dependent on you in these ways. I see your impatience, and I build a wall, so I can’t feel my pain. I wish I could help you, help me.
My gift to you, is to make you aware of your great fortune, your healthy back, hands, and legs, your ability to do for yourself.
Sometimes people do not notice me, I always notice them.
I am in this chair. You always look down at me. It hurts my neck to look up at your chest, LOL.
If you could step back a bit, that would help me see you, and also, maybe you can see me better.
I would be lying if I told you that I never feel envy, or desire to stand upright, to put one foot in front of the other, or to be independent.
If you’ll accept it, I will give you awareness, and an opportunity to see what I can offer. It is usually, all that I have.
I am here. I cannot walk. I am challenged with Cerebral Palsy, and all that goes with it, and that’s a lot.
Sometimes I am scared of being left once more, because it is very difficult to help me and love me at the same time.
I don’t learn easily, but I am curious, so there is a teacher in me that shows me the way.
What I do know, is infinite joy in simple things.
I am not burdened as you are, with the striving and conflicts of life.
My gift to you, is to grant you the freedom to enjoy things as a child, to teach you how much it means to me to have your arms around me, to give you love. I give you the gift of simplicity.
I am the shadow in front of you. If you try, you can see me.
I am here, your teacher, as you are mine.
If you will allow me, I will teach you what is really important in life.
I will give you, and teach you, unconditional love.
I give you my trust, and my dependency upon you.
I teach you about how very precious life is, and about not taking things for granted.
I teach you about forgetting your own needs and desires and dreams. I teach you how to give.
Most of all, I teach you, hope, faith, and love.
I am a shadow, you can see me if you slow down and look.
You will see, I love you unconditionally. I learned this in my chair.
A chair that is colorful, just as I want my world to be.
My chair is covered in duct tape. It has lights, and a bell. There is so much going on, you can barely see me. I wear a mask.
It makes you look. There is a lot going on, as there is in life.
This is why I do what I do.
I am a shadow with light, and love.
You can see me if you try, as I see you.
I’m going to tell everybody this who has a child with a disability
The world is a cruel place you’re Going to need your energy to battle the Munsters. Believe me the healthcare system is not kind to disable people I am strong and have the willingness never to give up even the way people treat me in the community and Healthcare so I am going to tell you the same never give up on him the way my mother did show him the love and caring he needs so that when he becomes in adult he’s ready to battle just like I had to at a young age
PS this is why I do what I do to create awareness because people with disabilities should not have to be treated that way in any circumstancenever give up the fight
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