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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Friday, February 26, 2010
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
Sunday, February 21, 2010
The Effects
My name is Wande Soluade and I am a 28yr old female living with Sickle Cell Anemia (Sickle Cell Disease~SCD). There are different types of Sickle Cell but the type I suffer from is SS. SS is the most severe form of the disease.
When I was younger I would get hospitalized every 6wks and I would be in the hospital for the maximum of 2 weeks. I would hide my illness from friends at school because I was afraid of what they would think of me. No one at school other than the nurse and a few teachers knew I had this disease. I always said this disease is not going to dictate who I am, my life, and how I enjoy my life! Finally, in my senior year at H.S. I shared with few friends that I had SS. To me that was the beginning. The beginning of making people aware of what SS is and what SS does! I began to open up.
When I went to college it was extremely hard for me to make it to class, or even do the work assigned to me but somehow I made it! Thank God! It wasn't easy (at times I put too much on my plate) and I had difficulty with my GPA but in the last two years in college I was placed on the Deans list despite my illness! Once I graduated from college, my pain crises also graduated to another level of intense pain.
Last summer I was hospitalized for 3months which included me being in the ICU, celebrating my birthday in the hospital, and missing the whole summer. In the past 3 yrs my hospitalizations go like this: I'm admitted into the hospital and am there for at least 1 1/2--2months. Once discharged then two months later I'm admitted back into the hospital for about 1 1/2-2 months. This has been a constant cycle for about 3yrs now.
As a result of the frequent hospitalizations and severity of pain I had to stop working as a social worker, of which I loved doing. I also had to return my car to the dealer, move out of my apartment and move back in with family. Sickle Cell Anemia has radically affected how I live my life. I've had my gall bladder taken out at age 9 when it's usually taken out in others who don't have SS at a much older adult. I've also had surgery on my left shoulder due to Avascular necrosis.
Avascular necrosis (AVN) is a disease resulting from the temporary or permanent loss of the blood supply to an area of bone. Without blood, the bone decays and the bone collapses. If AVN involves the bones of a joint, it often leads to destruction of the joint. For me it is both my shoulders and my back. Because of my AVN, I have had surgery on my left shoulder. I've yet to have surgery on my right shoulder. The end result though is that I'll need both my shoulders replaced. Imagine that! The doctors suggested I have them replaced because of the affect AVN has had on them but I feel I am too young to have them replaced. I feel that way because the replacement will only last for about 20yrs. If I do have them replaced now it would only last till about my 50's. So I decided to wait till my late 50's to have the surgery done. Waiting till my 50's would have them last to my 80's.
Not long ago I was released out of a 2 month stay in the hospital. During my stay in the hospital my knee grew swollen with fluid in it and I began walking with a cane. Due to the severity of my illness, nurses had to come to my home to aide me. Additionally, I received home health aides to assist me in my daily life.
_________________________
Many ask me what my pain feels like. Depending on where my pain is at times determines what kind of pain I endure. When I have pain in my legs, back, and shoulders it feels like several knives being stabbed into me simultaneously and none stop! When the pain is in my stomach it's a dull/pressure pain that feels like a person trying to push their fist through a balloon without sucess. My shoulder pains also feel like two rusted metal rods grinding against each other. My back pain feels like having lightning rods shoot up my back-paralyzing me in pain! The pain that I go through is called having a CRISES. It's so intense that the description above can't even touch or come close to explaining how deep and hurtful the pain is. In the midst of having these crises I can't breathe properly because of its intensity.
THE REASON I AM BEING SO BLUNT AND OPEN ABOUT HOW SICKLE CELL ANEMIA AFFECTS ME IS TO MAKE PEOPLE AWARE. MOST PEOPLE ARE AWARE OF HOW CANCER AFFECTS A PERSON BUT MOST ARE UNEDUCATED/UNAWARE ABOUT SICKLE CELL ANEMIA AND HOW IT AFFECTS THOSE THAT SUFFER FROM IT. THAT IS WHY I CREATED THIS BLOG.
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When I was younger I would get hospitalized every 6wks and I would be in the hospital for the maximum of 2 weeks. I would hide my illness from friends at school because I was afraid of what they would think of me. No one at school other than the nurse and a few teachers knew I had this disease. I always said this disease is not going to dictate who I am, my life, and how I enjoy my life! Finally, in my senior year at H.S. I shared with few friends that I had SS. To me that was the beginning. The beginning of making people aware of what SS is and what SS does! I began to open up.
When I went to college it was extremely hard for me to make it to class, or even do the work assigned to me but somehow I made it! Thank God! It wasn't easy (at times I put too much on my plate) and I had difficulty with my GPA but in the last two years in college I was placed on the Deans list despite my illness! Once I graduated from college, my pain crises also graduated to another level of intense pain.
Last summer I was hospitalized for 3months which included me being in the ICU, celebrating my birthday in the hospital, and missing the whole summer. In the past 3 yrs my hospitalizations go like this: I'm admitted into the hospital and am there for at least 1 1/2--2months. Once discharged then two months later I'm admitted back into the hospital for about 1 1/2-2 months. This has been a constant cycle for about 3yrs now.
As a result of the frequent hospitalizations and severity of pain I had to stop working as a social worker, of which I loved doing. I also had to return my car to the dealer, move out of my apartment and move back in with family. Sickle Cell Anemia has radically affected how I live my life. I've had my gall bladder taken out at age 9 when it's usually taken out in others who don't have SS at a much older adult. I've also had surgery on my left shoulder due to Avascular necrosis.
Avascular necrosis (AVN) is a disease resulting from the temporary or permanent loss of the blood supply to an area of bone. Without blood, the bone decays and the bone collapses. If AVN involves the bones of a joint, it often leads to destruction of the joint. For me it is both my shoulders and my back. Because of my AVN, I have had surgery on my left shoulder. I've yet to have surgery on my right shoulder. The end result though is that I'll need both my shoulders replaced. Imagine that! The doctors suggested I have them replaced because of the affect AVN has had on them but I feel I am too young to have them replaced. I feel that way because the replacement will only last for about 20yrs. If I do have them replaced now it would only last till about my 50's. So I decided to wait till my late 50's to have the surgery done. Waiting till my 50's would have them last to my 80's.
Not long ago I was released out of a 2 month stay in the hospital. During my stay in the hospital my knee grew swollen with fluid in it and I began walking with a cane. Due to the severity of my illness, nurses had to come to my home to aide me. Additionally, I received home health aides to assist me in my daily life.
_________________________
Many ask me what my pain feels like. Depending on where my pain is at times determines what kind of pain I endure. When I have pain in my legs, back, and shoulders it feels like several knives being stabbed into me simultaneously and none stop! When the pain is in my stomach it's a dull/pressure pain that feels like a person trying to push their fist through a balloon without sucess. My shoulder pains also feel like two rusted metal rods grinding against each other. My back pain feels like having lightning rods shoot up my back-paralyzing me in pain! The pain that I go through is called having a CRISES. It's so intense that the description above can't even touch or come close to explaining how deep and hurtful the pain is. In the midst of having these crises I can't breathe properly because of its intensity.
THE REASON I AM BEING SO BLUNT AND OPEN ABOUT HOW SICKLE CELL ANEMIA AFFECTS ME IS TO MAKE PEOPLE AWARE. MOST PEOPLE ARE AWARE OF HOW CANCER AFFECTS A PERSON BUT MOST ARE UNEDUCATED/UNAWARE ABOUT SICKLE CELL ANEMIA AND HOW IT AFFECTS THOSE THAT SUFFER FROM IT. THAT IS WHY I CREATED THIS BLOG.
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ER
I am currently sitting in the Emergency Room watching how packed it is and wondering how long will I have to sit here in agony. I look around the room questioning who is here for what and when the last time it was they were in the emergency room. I laugh thinking if only they knew what number this is. This constant cycle of going back and forth to the hospital is something only a chosen few are able to endure and understand. How many times is it though~I ask myself and am dismayed by the large multitude that keeps me from knowing.
One by one people are called. One by one I anxiously await the sound of my name to be called but it's not. It's not yet my turn. In this same breathe I feel the pain in my shoulder grow excruciatingly sharper and fierce as it moves throughout my body. I am truly amazed that I am even capable to write as I am. Then I think of the tolerance that I have built up over the years. I fear that by the time my name is called I won't be able to move and I think of the embarassment that may come if I were to need to be carried in the presence of all these strangers. Strangers. They are strangers and yet I give them this power. Why should I fear them when there is something much greater happening. No. No, I won't give up more power. I need that power to fight this disease with God by my side.
Uhhhh. The process. Coming in. Waiting. In pain. Finally, getting called. Going in onto a stretcher. Again waiting. Finally the beggining. Getting an I.V. placed. For me it's placed in my chest where they surgically placed a porta-catheter for I.V. access. Why? Why do I have this? It's because of the endless amount of times I have been stuck by a needle to get blood and to have an I.V. access. The I.V. access helps push my sickled cells through my veins: A normal occurence so many don't even know to appreciate that I have to pray to have happen. Being stuck so much led to my weak veins that would blow at the contact of a needle and the cartilidge that exists due to constant pricking. I have no more veins to work with so surgeons implanted a catheter in my chest connected to my gugular vein that goes up my right neck ever so subtley. I know it's there but many do not. When they see it they think it's a vein. When I see it, I know it's a tube that liberates me from the constant proding. Yes. Now, when I'm stuck neither I or the nurse have to hope and pray to catch a good vein or even a vein at all. No. Instead, I get stuck in my chest to get access to the catheter which allows nurses/docs to take blood so much more easily than trying to get my blood through a vein (with it's many sticks) and to give I.V. fluids so much more easily and so freely. Blood is drawn and I.V. flows through. X-Rays done. What next? A doctor comes in to ask questions already answered three times before getting on the stretcher. I answer. Finally the doc leaves. Once the doc leaves, you know treatment is not far behind. Yes. Pain medication. Relief. Then more pain medication and more pain medication. After the third pain medication then you either leave or get admitted into the hospital. For me it's always an admittion into the hospital. All of this takes place for about 5-9 hours. Then you wait some more. Wait 1-3 hours for a bed upstairs. Once upstairs constant pricking, blood, 24/7 pain medication on drip in addition to pill pain medication and being stuck by a needle that has medication to thin out my blood (since I can't move much due to the pain) which would normally occur if I was able to walk. Then I have none stop nurses coming in and out and a nurse aide noting exactly how much I drink.
No sleep. No real privacy. Once better, then discharged from hospital with a list of drugs (some new some old) to take at home. Once home weak from all the pain and from not being able to move much while in the hospital. So I build slowly to get to the me I know myself to be. How long? It differs. Once strong I'm back to being ME only to go through it all over again. That's an experience of a Sickler, NO, a RARE GEM. Using the word Sickler only demeans us more. We are rare and we are gems~>Rare Gems!
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One by one people are called. One by one I anxiously await the sound of my name to be called but it's not. It's not yet my turn. In this same breathe I feel the pain in my shoulder grow excruciatingly sharper and fierce as it moves throughout my body. I am truly amazed that I am even capable to write as I am. Then I think of the tolerance that I have built up over the years. I fear that by the time my name is called I won't be able to move and I think of the embarassment that may come if I were to need to be carried in the presence of all these strangers. Strangers. They are strangers and yet I give them this power. Why should I fear them when there is something much greater happening. No. No, I won't give up more power. I need that power to fight this disease with God by my side.
Uhhhh. The process. Coming in. Waiting. In pain. Finally, getting called. Going in onto a stretcher. Again waiting. Finally the beggining. Getting an I.V. placed. For me it's placed in my chest where they surgically placed a porta-catheter for I.V. access. Why? Why do I have this? It's because of the endless amount of times I have been stuck by a needle to get blood and to have an I.V. access. The I.V. access helps push my sickled cells through my veins: A normal occurence so many don't even know to appreciate that I have to pray to have happen. Being stuck so much led to my weak veins that would blow at the contact of a needle and the cartilidge that exists due to constant pricking. I have no more veins to work with so surgeons implanted a catheter in my chest connected to my gugular vein that goes up my right neck ever so subtley. I know it's there but many do not. When they see it they think it's a vein. When I see it, I know it's a tube that liberates me from the constant proding. Yes. Now, when I'm stuck neither I or the nurse have to hope and pray to catch a good vein or even a vein at all. No. Instead, I get stuck in my chest to get access to the catheter which allows nurses/docs to take blood so much more easily than trying to get my blood through a vein (with it's many sticks) and to give I.V. fluids so much more easily and so freely. Blood is drawn and I.V. flows through. X-Rays done. What next? A doctor comes in to ask questions already answered three times before getting on the stretcher. I answer. Finally the doc leaves. Once the doc leaves, you know treatment is not far behind. Yes. Pain medication. Relief. Then more pain medication and more pain medication. After the third pain medication then you either leave or get admitted into the hospital. For me it's always an admittion into the hospital. All of this takes place for about 5-9 hours. Then you wait some more. Wait 1-3 hours for a bed upstairs. Once upstairs constant pricking, blood, 24/7 pain medication on drip in addition to pill pain medication and being stuck by a needle that has medication to thin out my blood (since I can't move much due to the pain) which would normally occur if I was able to walk. Then I have none stop nurses coming in and out and a nurse aide noting exactly how much I drink.
No sleep. No real privacy. Once better, then discharged from hospital with a list of drugs (some new some old) to take at home. Once home weak from all the pain and from not being able to move much while in the hospital. So I build slowly to get to the me I know myself to be. How long? It differs. Once strong I'm back to being ME only to go through it all over again. That's an experience of a Sickler, NO, a RARE GEM. Using the word Sickler only demeans us more. We are rare and we are gems~>Rare Gems!
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Thursday, February 18, 2010
The Scary part!
Since I was a child I've known that death was a very really and very soon possibility for me. Of course, all of us are going to die one day but to know that you may have to deal with the pure reality of that fact because of the blood that runs through your veins is scary for a little girl. Since I was a baby I've been in tremendous and agonizing pain but it didn't scare me. No one really knows this about me but since my illness has grown increasingly worse those fears I developed as a child have become very real to me. I talked to one guy I befriended about it and to another but understanding is something that people lack when it comes to this disease or when it comes to me. You see though I suffer greatly from this disease i don't look like it. It's as if you have to look like your red blood cells are clotting together keeping blood from flowing and holding back any oxygen from getting to the other parts of my body creating EXCRUCIATING pain-to look sick. Many times I wonder. Who can I go to? Who can I confide in? Those of whom I have stirred up the courage to talk to at times take what I go through as a joke but its no joke. Sometimes I just want to SCREAM! Just because I look okay doesn't mean I am. Living with this disease any sufferer will tell you that one develops a threshold of extreme pain. Many times with a smile on my face in the crowds of people surrounding me with people I called friends I stand in pain with no one knowing. I pray its only fears. Death will one day find me but I hope it is after I have done all of what God has planted me here to do.
My talents are minimal. I cannot sing, dance, or do what so many others can do but I can speak up. Speak up for the disease that God purposed me to have so that I can somehow make a mark in my community or maybe even the world. That is why I work so hard to create greater awareness and education when it comes to Sickle Cell Anemia and not because I happen to suffer with it but because it is so highly mis-understood, ignored, and out-casted. So many speak of and know of AIDS & CANCER as they should but do those same people know of SICKLE CELL ANEMIA? The majority don't. Those that do know of it see it as a Scarlett letter thinking, "only black people get it while others think most of the people who have it are drug users-abusers faking their pain to get a fix." I say that because that is what some have thought of when it comes to me. While they think that and hesitate to aide my pain I sit there in pain-DYING-FIGHTING THE TEARS-swallowing the agony that comes from the simple movement of my circular red blood cells transforming into the shape of a sickle. Those simple acts are what place me in the mercy of others every single day.
That's why I fight so HARD and so much! In whatever ways I can. Many can't understand but my goal before I do leave this earth is to help people to Truly Understand-not judge, criticize, overlook, or doubt but UNDERSTAND. Wherever~whether it be in Africa or the United States.
Share
My talents are minimal. I cannot sing, dance, or do what so many others can do but I can speak up. Speak up for the disease that God purposed me to have so that I can somehow make a mark in my community or maybe even the world. That is why I work so hard to create greater awareness and education when it comes to Sickle Cell Anemia and not because I happen to suffer with it but because it is so highly mis-understood, ignored, and out-casted. So many speak of and know of AIDS & CANCER as they should but do those same people know of SICKLE CELL ANEMIA? The majority don't. Those that do know of it see it as a Scarlett letter thinking, "only black people get it while others think most of the people who have it are drug users-abusers faking their pain to get a fix." I say that because that is what some have thought of when it comes to me. While they think that and hesitate to aide my pain I sit there in pain-DYING-FIGHTING THE TEARS-swallowing the agony that comes from the simple movement of my circular red blood cells transforming into the shape of a sickle. Those simple acts are what place me in the mercy of others every single day.
That's why I fight so HARD and so much! In whatever ways I can. Many can't understand but my goal before I do leave this earth is to help people to Truly Understand-not judge, criticize, overlook, or doubt but UNDERSTAND. Wherever~whether it be in Africa or the United States.
Share
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