My writing these blogs is not because I have given up. Not at all. If I had I wouldn't be writing and advocating as I am. All I want to do is create better awareness of the detailed things a sickle cell sufferer goes through and the only way to do so is by writing about my experiences. So please don't confuse my openness for complaining. Thank you all for reading and for your support!
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Thursday, March 11, 2010
Sunday, March 7, 2010
I Stand Alone
Living with Sickle Cell Anemia can be a very lonely thing. Most people don't know what it is and if they do know their knowledge is limited. Aside from that we feel ostracized somehow for having an illness we did not ask for. When you try to explain to friends/family their understanding is limited because they cannot comprehend the extent of Pain that we go through.
As for myself, it is even harder for me because my tolerance for pain is high so when I explain to friends/family that I am feeling sick somehow those words cannot truly translate what I mean when I say I'm feeling sick. Many times because of the tolerance I've built up I can walk around with a smile, even laughing and doing normal things while in the midst of allot of pain. It makes no sense to anyone else that one could be in so much pain and yet on the outside look fine. This is the trouble I run into when around family and friends. Okay so I will now try to find the closest words I can to define what I mean when I say I feel sick: I feel stabbing pains as though someone were taking a knife and would stab me continuously with it to the point of feeling paralyzed (unable to move my arms), I would feel someone taking several needles and like with a gun shoot me with them all over my body front and back by several people at the same time, I'd feel someone crushing my bones as though all they wanted was for my bones to turn to dust, I'd feel someone twisting my bones to the point of them snapping into two, I would feel someone like the incredible hulk punching me in my stomach as though trying to get through me to the other side of my back. There are so many more analogies I can give that wouldn't give the pain I go through justice but I am left with only words. Words that can only go so far yet my pain continues from there. Think of all the examples I gave above and imagine feeling all of them at the same time. WOW. It's beyond this world how painful it is.
When I go through a crises and while someone is beside me they see my body convulse in pain and all I can do is grab something, anything for help. Many times family or friends will stand beside me in my pain crises and be clueless. Let's go a little further and imagine a doctor or nurse standing beside you as you go through this endless, excruciating amount of pain and they say no. No, you will not receive anymore pain medication. What would you do? Seriously? Would you sit there quietly and just take it or would you fight with whatever you have left to get the one thing that is capable of relieving your pain~>pain medicine. Some people that I have had by my bedside have seen me in the most painful of times but are so clueless that they instead of sympathizing with you or at least try to help instead criticize me in my battle for relief.
God is awesome! He alone knows what I go through. I remember him when I see the heartlessness of others. At times, death seems so close when in the midst of such excruciating pain. I fear many times my body not being able to take any more pain yet because of my God I survive. He is my rock whether or not I have the understanding of people by my side. I sometimes wish some people could feel just for five minutes the hell I go through on a constant basis. But they can't so they're left in their cocoon of how they feel when they are sick. They compare my Hell to their head-ache or their stomach cramps which is so menial compared to the pain I go through. Not to say that their pain is not justified but to limit me by the pain they've only known is UNFAIR!
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As for myself, it is even harder for me because my tolerance for pain is high so when I explain to friends/family that I am feeling sick somehow those words cannot truly translate what I mean when I say I'm feeling sick. Many times because of the tolerance I've built up I can walk around with a smile, even laughing and doing normal things while in the midst of allot of pain. It makes no sense to anyone else that one could be in so much pain and yet on the outside look fine. This is the trouble I run into when around family and friends. Okay so I will now try to find the closest words I can to define what I mean when I say I feel sick: I feel stabbing pains as though someone were taking a knife and would stab me continuously with it to the point of feeling paralyzed (unable to move my arms), I would feel someone taking several needles and like with a gun shoot me with them all over my body front and back by several people at the same time, I'd feel someone crushing my bones as though all they wanted was for my bones to turn to dust, I'd feel someone twisting my bones to the point of them snapping into two, I would feel someone like the incredible hulk punching me in my stomach as though trying to get through me to the other side of my back. There are so many more analogies I can give that wouldn't give the pain I go through justice but I am left with only words. Words that can only go so far yet my pain continues from there. Think of all the examples I gave above and imagine feeling all of them at the same time. WOW. It's beyond this world how painful it is.
When I go through a crises and while someone is beside me they see my body convulse in pain and all I can do is grab something, anything for help. Many times family or friends will stand beside me in my pain crises and be clueless. Let's go a little further and imagine a doctor or nurse standing beside you as you go through this endless, excruciating amount of pain and they say no. No, you will not receive anymore pain medication. What would you do? Seriously? Would you sit there quietly and just take it or would you fight with whatever you have left to get the one thing that is capable of relieving your pain~>pain medicine. Some people that I have had by my bedside have seen me in the most painful of times but are so clueless that they instead of sympathizing with you or at least try to help instead criticize me in my battle for relief.
God is awesome! He alone knows what I go through. I remember him when I see the heartlessness of others. At times, death seems so close when in the midst of such excruciating pain. I fear many times my body not being able to take any more pain yet because of my God I survive. He is my rock whether or not I have the understanding of people by my side. I sometimes wish some people could feel just for five minutes the hell I go through on a constant basis. But they can't so they're left in their cocoon of how they feel when they are sick. They compare my Hell to their head-ache or their stomach cramps which is so menial compared to the pain I go through. Not to say that their pain is not justified but to limit me by the pain they've only known is UNFAIR!
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Friday, March 5, 2010
In My Pain
Why is it that once I (and so many others with Sickle Cell Anemia) transition from our youth/pediatric unit to the adult unit doctors begin to approach our treatment with doubt, questions, and hesitation? When I was younger, when I told my doctor my pain was increasing and therefore needed my pain medication increased the physician would agree with me and therefore increase my pain treatment. However, as an adult when I ask for more pain medication the doctor hesitates and or ignores my plea. The main reason as to why doctors have a mistrust of Sickle Cell Anemia Patients is because they think we are 1) Drug-Abusers, 2)Faking.
It hurts me to think that the same people that are put in place to help me are the first ones to doubt me. When this happens it is so difficult to get pain relief because the doctor is not willing to work with you. The best doctors I've had were the ones that made me their priority and relieving my pain their goal. It was a relationship in which trust was placed in each other. The doctor trusted that I was in pain and needed treatment and I trusted the doctor would do everything in his power to get me to a state that I felt comfortable.
To make it crystal clear how all of this really affects us as Sickle Cell Anemia Sufferers: you take away the strength of medication needed to curtail our pain crises you take away our power to be free. I say free because taking away our pain frees us from such intense and severe pain so to take that away from us leaves us in a virtual Hell. Would you take or limit pain medication/kemo from a cancer patient? Would one ever question their pain? So why question and doubt ours? What must we do to be treated with respect and hospitality. A hospital is meant to be hospitable but where do that hospitality go when Sickle Cell Anemia Sufferers enter the room? Why when we must fight our disease do we have to fight doctors and nurses? I'll ask again--WHY? Do you not know our pain? Do you not know our suffering? Do you not see our face and our bodies as we convulse in pain? What shall we do? Where shall we go? Must we die off one by one to get the eye of people to finally notice the lack of care we get? Do we deserve the blood-induced Hell? Is that why we're left alone so often to fend for ourselves? What must I do? Shall I scream louder?!? Where to go? What more to do? I do not know. I do not know. I'm left in my pain and agony to suffer--why because a majority of African-Americans are the ones affected by this disease? Did I choose my color? Did I choose my blood to morph into a thorn that stabs into my inner being? No. All I have chosen is Life. I've chosen to live despite this thing that takes my life in so many ways. No We Push past the stereotypes, or prejudices to fight for better treatment and better Respect.
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It hurts me to think that the same people that are put in place to help me are the first ones to doubt me. When this happens it is so difficult to get pain relief because the doctor is not willing to work with you. The best doctors I've had were the ones that made me their priority and relieving my pain their goal. It was a relationship in which trust was placed in each other. The doctor trusted that I was in pain and needed treatment and I trusted the doctor would do everything in his power to get me to a state that I felt comfortable.
To make it crystal clear how all of this really affects us as Sickle Cell Anemia Sufferers: you take away the strength of medication needed to curtail our pain crises you take away our power to be free. I say free because taking away our pain frees us from such intense and severe pain so to take that away from us leaves us in a virtual Hell. Would you take or limit pain medication/kemo from a cancer patient? Would one ever question their pain? So why question and doubt ours? What must we do to be treated with respect and hospitality. A hospital is meant to be hospitable but where do that hospitality go when Sickle Cell Anemia Sufferers enter the room? Why when we must fight our disease do we have to fight doctors and nurses? I'll ask again--WHY? Do you not know our pain? Do you not know our suffering? Do you not see our face and our bodies as we convulse in pain? What shall we do? Where shall we go? Must we die off one by one to get the eye of people to finally notice the lack of care we get? Do we deserve the blood-induced Hell? Is that why we're left alone so often to fend for ourselves? What must I do? Shall I scream louder?!? Where to go? What more to do? I do not know. I do not know. I'm left in my pain and agony to suffer--why because a majority of African-Americans are the ones affected by this disease? Did I choose my color? Did I choose my blood to morph into a thorn that stabs into my inner being? No. All I have chosen is Life. I've chosen to live despite this thing that takes my life in so many ways. No We Push past the stereotypes, or prejudices to fight for better treatment and better Respect.
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