I know that for myself, as I was growing up I didn't share with anyone outside my family that I had this disease. That can be a very lonely place though family is by your side there is a balance that's needed. One cannot deal with all that comes from suffering from this disease with only family nor can one deal with it with only friends. There is something that each group of people brings to someone suffering from a debilitating disease.
From my previous blogs you can see how difficult it is for me living with this disease. So when I say that the role that family and friends play is Essential, I mean that when we as sufferers go to that dark place that sometimes comes with the amount of pain, pressure, and circumstances that we deal with, it can be the source that we go to, the strength that we draw from which pushes us forward through the cycle of attacks we endure.
When one goes through the hardest times in there lives, the people surrounding them are the one's that can lift that person up. Without having a circle of friends & family it is very hard for anyone, let alone someone with Sickle Cell Anemia to take on everything that comes with having this disease. My desire here is to highlight & acknowledge how integral the role you play is. Don't underestimate how much of a contribution you make to a loved one. I have only experienced one side & that side is from a hospital bed. When I think of what it takes to be on the other end, where you see the amount of pain an attack brings on, I wonder to myself & ask would I be able to continue to stand there? The fact that one chooses to continue to be that source of support for someone who is chronically sick & the fact that despite how uncomfortable & difficult it may be to witness all the pain an attack (Crises) brings on it only shows your level of Love & Commitment to that person. Though in the midst of an attack (Crises) knowing that a loved one is there by your side, it does wonders for the morale & ultimate well-being of a sufferer.
If you know someone with an illness or someone with Sickle Cell Anemia then reach out to that person. Don't feel like you have to have the right answers or worry that you have to say the right thing. Believe me when I say that just as much as you may not know what to say when your loved one is going through such incredible pain, the person suffering through the pain doesn't know what to say knowing you’ve seen them in such a horrible state. Support. Being there for your loved one means sticking by there side. When we sufferers talk about the pain we go through it may be a bit overwhelming & scary to hear the details of what we endure but you don’t have to shield your fears from a sufferer. Just as us sufferers are seeking a refuge where we can go to you & release all the emotions & trials that come up you too can open up & share your emotions & the trail of seeing us in so much pain. By openly communicating we-together are opening up a bridge of communication, a bond of trust and that is so important so that a Sufferer does not have to feel like they can’t share how they feel and YOU don't have to feel like you have to put up a front that you have it all together. I know for me it became second nature to keep my feelings to myself because the times I did share my heart it would either scare my friend or they would scare me by giving a response like: are you dying? Being shot down when I was open brought up a wall between me & everyone else which can bring both a feeling of discomfort & weirdness. Not everyone can handle a situation but those that care enough & love enough to make it happen despite fears & insecurity—I encourage you to do so.
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Sunday, April 11, 2010
Thursday, April 1, 2010
One VOICE
As I began my advocacy for Sickle Cell Anemia I didn't know how much of an impact one voice would make--though it's always said that one voice can make a difference. I didn't know that my voice would take part in making such a difference but as I delve deeper and deeper into advocacy I see how wrong I was and how much I under-estimated what one voice could do.
Now, I am fueled to make an even bigger mark in the Sickle Cell Community. How can I do that? I can do that by encouraging each and every one who reads my Blogs (whether or not you have this disease) to spread the word and educate people on the things that you have learned. I have a website that I created for such a purpose (education). Please check out my website at: http://wandefightsforsicklecellanemia.com/ I encourage you all to share what you've learned and voice questions you may have by going to the~Share You Story~tab and writing in my guest book.
You know, it’s so easy for a voice to die in silence. I was there. I was tired, hurting allot, and lost in my pain. But the one thing that helps me the most is sharing my story and knowing that I'm not alone in this because by sharing my story I've freed myself up to people hearing me and all I go through in addition to hearing what others go through. So you see its not in vein. My disease not only teaches me life lessons that cannot be learned in a classroom but it opens up dialog and experiences that others don't have from living with Sickle Cell Anemia.
I'm not going to lie. Living with this disease is definitely the HARDEST thing that I have had to do and endure. In my advocacy, it may seem as though I just deal with this illness and move on but that's not true. Believe me when I say that there have been many times where I've hit a wall and been sad, in tears and frustrated by the life I was given to live. I've even questioned God and his purpose for me. I'd question many things in my life and wonder why me? Did I deserve this torture of a life? Am I a bad person and having to pay for it with this torn in my side day-in and day-out? It is Hard. It's really hard but whenever I get to that place in my head or even my heart I remember that this disease has also brought me many of the best things in my life. It has exposed things in me and how I deal with various situations. I've learned that I became a very angry person because of the constant going in and out of the hospital and the demeaning ways I would be treated when hospitalized. I became so angry that my anger took over who I was. I had to learn how to deal with and channel my anger. Funny enough, I didn't realize how angry I was till it all caught up with me. I saw myself in the proverbial mirror which was my disease and I had to grow as a person. I had to grow and deal with the resentment that came from all my suffering and in doing so I have become a better person. I have become a more grateful person.
Without having this disease I wouldn't have been able to get to that part of myself that harbored so much anger. I began to learn how I dealt not only with my illness but with everything that comes with life whether it is: relationships/friendships, family, work or any thing else. This discovery then brought me to deal with the other areas of my life that I honestly was not dealing with. Instead of dealing I would just push things under the rug, leaving it to all pile up and make me trip. I kept wondering throughout my life why the same issues would arise over and over again but learning from my illness I saw for the first time how much of my life was connected to how I deal with my illness. As a result, I began to deal. I began to heal. I'm still learning and growing and I have much more to learn but I now see how essential having this disease has meant to my overall makeup and identity.
Now, I've been very ill as I have written in a previous blog so as I talk it over with my doctor I am considering his suggestion to have a bone marrow-transplant. From the things that I have been learning I now know that though Sickle Cell Anemia has helped shape me into the woman that I am--my Identity is not Sickle Cell. Though it has such an effect on who I am and will be (as a result of what I've suffered) it is not all of me. So if I were to go through with the bone marrow transplant and be cured I would not be lost without Sickle Cell.
There was a time when I was well and not hospitalized so often. I began to be afraid of who I would be without Sickle Cell. I know it sounds really twisted but my whole life has been surrounded around this illness. So to be without that thing that I used as a driving force for so many things in my life I began to wonder if by myself I could conjure up that same drive and intensity. When you spend your whole life living a certain way how do you just switch off and begin living a different way? That's the question that would run through my mind till I worked on my security and my insecurity. Finally, I realized that though my illness would drive me to do things because I didn't want to be held back I was present in my drive. I learned that I was present and apart of whatever drove me forward so I wasn't losing out on anything because it wasn't my disease that drove me. It was the will of God within me that pushed me and was my driving force.
There is so much of what comes together to define me. There is so much that comes together to define us all. Don't loose sight of who you are and how you've come to be. We can all learn from each other. We can all relate to each other. I just hope that my words help and you can relate to any of my experiences. Use your voice as I'm learning to use mine.
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Now, I am fueled to make an even bigger mark in the Sickle Cell Community. How can I do that? I can do that by encouraging each and every one who reads my Blogs (whether or not you have this disease) to spread the word and educate people on the things that you have learned. I have a website that I created for such a purpose (education). Please check out my website at: http://wandefightsforsicklecellanemia.com/ I encourage you all to share what you've learned and voice questions you may have by going to the~Share You Story~tab and writing in my guest book.
You know, it’s so easy for a voice to die in silence. I was there. I was tired, hurting allot, and lost in my pain. But the one thing that helps me the most is sharing my story and knowing that I'm not alone in this because by sharing my story I've freed myself up to people hearing me and all I go through in addition to hearing what others go through. So you see its not in vein. My disease not only teaches me life lessons that cannot be learned in a classroom but it opens up dialog and experiences that others don't have from living with Sickle Cell Anemia.
I'm not going to lie. Living with this disease is definitely the HARDEST thing that I have had to do and endure. In my advocacy, it may seem as though I just deal with this illness and move on but that's not true. Believe me when I say that there have been many times where I've hit a wall and been sad, in tears and frustrated by the life I was given to live. I've even questioned God and his purpose for me. I'd question many things in my life and wonder why me? Did I deserve this torture of a life? Am I a bad person and having to pay for it with this torn in my side day-in and day-out? It is Hard. It's really hard but whenever I get to that place in my head or even my heart I remember that this disease has also brought me many of the best things in my life. It has exposed things in me and how I deal with various situations. I've learned that I became a very angry person because of the constant going in and out of the hospital and the demeaning ways I would be treated when hospitalized. I became so angry that my anger took over who I was. I had to learn how to deal with and channel my anger. Funny enough, I didn't realize how angry I was till it all caught up with me. I saw myself in the proverbial mirror which was my disease and I had to grow as a person. I had to grow and deal with the resentment that came from all my suffering and in doing so I have become a better person. I have become a more grateful person.
Without having this disease I wouldn't have been able to get to that part of myself that harbored so much anger. I began to learn how I dealt not only with my illness but with everything that comes with life whether it is: relationships/friendships, family, work or any thing else. This discovery then brought me to deal with the other areas of my life that I honestly was not dealing with. Instead of dealing I would just push things under the rug, leaving it to all pile up and make me trip. I kept wondering throughout my life why the same issues would arise over and over again but learning from my illness I saw for the first time how much of my life was connected to how I deal with my illness. As a result, I began to deal. I began to heal. I'm still learning and growing and I have much more to learn but I now see how essential having this disease has meant to my overall makeup and identity.
Now, I've been very ill as I have written in a previous blog so as I talk it over with my doctor I am considering his suggestion to have a bone marrow-transplant. From the things that I have been learning I now know that though Sickle Cell Anemia has helped shape me into the woman that I am--my Identity is not Sickle Cell. Though it has such an effect on who I am and will be (as a result of what I've suffered) it is not all of me. So if I were to go through with the bone marrow transplant and be cured I would not be lost without Sickle Cell.
There was a time when I was well and not hospitalized so often. I began to be afraid of who I would be without Sickle Cell. I know it sounds really twisted but my whole life has been surrounded around this illness. So to be without that thing that I used as a driving force for so many things in my life I began to wonder if by myself I could conjure up that same drive and intensity. When you spend your whole life living a certain way how do you just switch off and begin living a different way? That's the question that would run through my mind till I worked on my security and my insecurity. Finally, I realized that though my illness would drive me to do things because I didn't want to be held back I was present in my drive. I learned that I was present and apart of whatever drove me forward so I wasn't losing out on anything because it wasn't my disease that drove me. It was the will of God within me that pushed me and was my driving force.
There is so much of what comes together to define me. There is so much that comes together to define us all. Don't loose sight of who you are and how you've come to be. We can all learn from each other. We can all relate to each other. I just hope that my words help and you can relate to any of my experiences. Use your voice as I'm learning to use mine.
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Thursday, March 11, 2010
The Purpose
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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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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Friday, February 26, 2010
Being Real
I get so tired. It's harder than anyone can even think or imagine. I try & try to be strong but I have nothing. The only things that keep me going are God and in his strength I get up everyday and push through. Lol, people say the darndest things/hurtful things in response to someone going through a trying time but thank God those things don't bring me Down. Instead I stand up. I stand up and fight even when there's no fight in me I fight. Even when there's no one to relate, I fight. I've fought and fought all my life and have been strong All My Life. In all my strength there lies: weakness, hardship and pain within my heart but that's not always seen. Sometimes I don't want to be strong and that's when I realize my father is my ResT. Thank God for my Dad! Where would I be without him? Wow, what a thought! I'm glad I don't have the opportunity to find that out. Instead I lay here in this hospital bed and look out into the city and see all of what Dad has for me and wants for me and a funny thing happened: I laugh thanking him that I'm here. Though with so much pain I thank you Dad for believing in me and seeing the strength in me and giving me the chance to be molded into the daughter he created me to be. I am who I am because of all my trials. I am who I am because of all the pain that marches through me. I'm called to rejoice in times like these. I wonder what I can find to be joyful for with this debilitating torn in my side, and I look up and realize that the joy I have is in all the fruit that comes from my struggle. I think back to my youth and the drive my Dad instilled in me to not be defined by my torn but to rise up against it and in spite of it. I think of the humility I have succumbed to and continue to succumb to. I think of the Love that’s been instilled in me to give back as a result. I think of the Love of my family each and every time I go through my Crises. I think of the character and woman I’ve become. I think of the blood, the sweat & the tears that bridge my path forward and I see Good. Yes, I see good things. Yes, I rejoice and in my joy I say Thank You Father {my DAD} for all that you have done. Thank You!!!
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Thursday, February 25, 2010
Ignorance
I just heard a nurse speaking loudly after I asked her for pain medication saying in an annoyed and ignorant voice: these Sicklers are supposed to be in and out but they're asking for medication Q1 (every hour). I don't know which nurse it was but I felt it necessary to bring it up with my nurse so she could take it back to whomever it was. So upon approaching my bedside to administer my pain medication I tell her what I heard a nurse say and shared with her my feelings toward that nurse's statement~>I am the one in pain and on the stretcher while the nurse is pain free and able to stand. So who is truly the inconvenienced one? I say inconvienienced because that is how she made getting pain medication seem like but if I'm not mistaken it is her job as a healhtcare professional. My nurse' response wasn't one of surprise but of defense saying: oh, I don't think she was talking about you I think it was about another Sickler (Sickler is the term they use to call those of us who suffer from this disease), as though whom the nurse was directing her statement to changed the view itself. I shared with my nurse how insignficant it was whom that nurse was talking about and instead I highlghted the ignorance that accompanied that statement.
This whole experience was truly another verifcation as to how ignorant and insensitive people are towards those of us who suffer from this disease. If a nurse (whom has been educated on Sickle Cell Anemia) can display such a level of candor then what am I or other sufferers to expect from the day-to-day leyman individual?
To give another perspective:
It's like being a nurse to a person who is sick with cancer and the patient hears that nurse in the midst of her impatience and frustration about having to care for them. When a patient who is going through so much and dealing with such a hard disease like cancer hears a nurse ranting and saying: these cancs were supposed to come in and out and not ask for pain relief Q1 (every hour). Now, I ask you~does that sound right? No. It doesn't. So why would that same nurse who I highly doubt would have made such a statement about a cancer sufferer feel entiltled and careless enough to make the exact same statement about a sickle cell sufferer?
Here is something to think of:
Peoples perceptions and what is tolerable. You see sickle cell sufferers are always having to fight not only the disease but the intolerable (such as presented here) on a constant basis.
Some ppl just don't get it.
Share
This whole experience was truly another verifcation as to how ignorant and insensitive people are towards those of us who suffer from this disease. If a nurse (whom has been educated on Sickle Cell Anemia) can display such a level of candor then what am I or other sufferers to expect from the day-to-day leyman individual?
To give another perspective:
It's like being a nurse to a person who is sick with cancer and the patient hears that nurse in the midst of her impatience and frustration about having to care for them. When a patient who is going through so much and dealing with such a hard disease like cancer hears a nurse ranting and saying: these cancs were supposed to come in and out and not ask for pain relief Q1 (every hour). Now, I ask you~does that sound right? No. It doesn't. So why would that same nurse who I highly doubt would have made such a statement about a cancer sufferer feel entiltled and careless enough to make the exact same statement about a sickle cell sufferer?
Here is something to think of:
Peoples perceptions and what is tolerable. You see sickle cell sufferers are always having to fight not only the disease but the intolerable (such as presented here) on a constant basis.
Some ppl just don't get it.
Share
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