This is 2015, it's been a while since I wrote on my blog. So much has happened. My kids are growing so big they are now teen, pre-teen, and almost pre-teen. I finished law school, though I have yet to take the bar. I fell sick three times either the week before the bar or a few weeks before the bar and was hospitalized. Frustration does not even begin to describe how I initially felt. Though, I am very grateful for being alive and for having my kids, I can't help some times but feel frustrated over my health and what it stops me from doing. It is ironic how when I was little and not quite aware of how serious my medical condition is. (My mom had kept it a secret from my brother, my sister and me) I had my life planned out. Right after high school I was going to go to college, after college, I was going to get into medical school and become a physician. I was going to have my own private practice and life was going to be awesomely awesome so to speak. I had no clue what life had in store for me. You would think by now I would be used to my health being on my way, but I still struggle to accept it.
After one of my hospitalizations, I was going to my hematologist's infusion room to get some hydration. Though I was very sick, my mind was on the bar exam that was happening without me. My husband was telling me not to worry about it when, one of the nurses who had been taking care of me heard him. She came to me and told me not to worry about that. She said that with everything happening with my health, I should just focus on my family and that I will take the bar exam whenever I am able to. She spoke to me for a long time. Oddly enough, I heard her, even though it is the same exact thing my husband had been telling me for years. Everyday I came in for hydration, she took a moment to talk to me. She gave me some scriptures to read and told me she would pray for me.
The unpredictability of my illness has been a factor that annoys me to no end, but I'm very thankful that God gave me a husband who has never complained about my illness. Each time I'm sick, he spends every minute by my side. He worries about nurses who may not understand my illness and not give me a blanket when I'm cold, or the doctor who may ask me questions such as: "Would applying ice help with the pain?" He is fiercely protective because he has seen his fair share of unprofessionalism from some hospital staff through the myriads of trips we've taken to the ER.
I'm also thankful for my daughters who have become my little nurses. They know what medicine is needed when. They know how to work my oxygen machine and never shudder with disgust when I have my bouts of bile problem that makes me vomit throughout the night. They dispose of the bags without any sign of disgust. They wipe my mouth and ask if I could drink some water. For these reasons, I know I should not worry about not being able to take the bar yet because I am lucky.
One time that I was sick, I saw how my daughters and my husband were all fussing over me, my mind drifted to one of our family friend.
When I was a teenager, we had a neighbor who later became a dear family friend. She too had Sickle Cell Anemia, but was a single mom of five. At that age, I had never thought about her situation. It was only then that I too realized how difficult it must have been for her being sick without help from anyone. When I'm sick, my husband takes a day or a few days off work to help with the girls. But when she was sick, there was no day off for her because she was all her children had in the home and the ones who were living at home with her were the three young ones who were ranging from age eight to six, the two youngest ones were twins. I felt immense gratitude for that moment and I thanked my family for being so wonderful.
Everyday, I thank my husband for being so selfless and loving and my daughters for being such old souls. I can't help but feel bad for what my illness does to my family and I apologize for it all the time. They told me to stop apologizing, but when in the middle of the night when children sleep, they are in the emergency room with me, barely sleep and then go to school in the morning or when I miss some of their events or whatever else happens, I feel horrible about it and that's why I apologize. The silver lining is that my daughters are very sensitive to people particularly those with health issues. But despite it all, the nurse was right. I should focus on the children and family God gave me. The rest is just a bonus.
God bless
Sunday, November 15, 2015
Thursday, October 28, 2010
Depressed
I am a bit depressed today. It does not happen that often, but this evening, I have this overwhelwing sense of "I can't do this anymore." Lately, the pain I feel from the damaged joints has been more constant than ever.
I always try sucking it up, but I have had to take a leave of absence from school because I was beginning to miss classes every week. After I found myself having to catch up as opposed to reading along with my classmates, I decided that maybe taking some time off was the best option.
My knees for a while stopped hurting so did my hips, but, all of a sudden all the joints are giving me such a hard time. Not being able to bend my right knee set my bad feelings in motion. I don't know why, I just became very frustrated.
In times like these, I wished I could have a break from all the pain I constantly feel. I don't want to wonder anymore what it feels like to be healthy or pain free. I feel bad for being in pain. I do not want my children to remember their mom always being in pain. I do not let the pain stop me from being a mother, but I do not want sickness to be part of their memory when they grow up. I hate it when my youngets one asks me if my back is ok before she climbs on my back to play with me.
Each time, I pick them up from school or when I wake them up in the morning, the first question they usually ask me is "Mommy are you feeling better?" I have never allowed my disease to define me, but I hate the sick person that I am. And more than anything, I hate the blood that runs through my veins.
I feel guilty for feeling sad because I know I should be thankful for all the blessings I have been bestowed.
In Christ
I always try sucking it up, but I have had to take a leave of absence from school because I was beginning to miss classes every week. After I found myself having to catch up as opposed to reading along with my classmates, I decided that maybe taking some time off was the best option.
My knees for a while stopped hurting so did my hips, but, all of a sudden all the joints are giving me such a hard time. Not being able to bend my right knee set my bad feelings in motion. I don't know why, I just became very frustrated.
In times like these, I wished I could have a break from all the pain I constantly feel. I don't want to wonder anymore what it feels like to be healthy or pain free. I feel bad for being in pain. I do not want my children to remember their mom always being in pain. I do not let the pain stop me from being a mother, but I do not want sickness to be part of their memory when they grow up. I hate it when my youngets one asks me if my back is ok before she climbs on my back to play with me.
Each time, I pick them up from school or when I wake them up in the morning, the first question they usually ask me is "Mommy are you feeling better?" I have never allowed my disease to define me, but I hate the sick person that I am. And more than anything, I hate the blood that runs through my veins.
I feel guilty for feeling sad because I know I should be thankful for all the blessings I have been bestowed.
In Christ
Saturday, December 5, 2009
Beet Juice
I have been absent for a bit because I was not feeling too well. I also had to catch up with my studying. Anyway, all is well now.
Nothing exciting has really happened. I was having some shoulder and back pain, and did not know what to do about it. I am trying not to take any medicine anymore, but the downside is that I often experience discomfort that I can't make disappear. I have been using more over the counter mentholated pathches, which kind of take the edge off my pain. Heating pads also help, especially in days when it been a bit too cold for me.
My husband has been telling me I have to work on taking my beet juice, but I took it so much as a kid that now just the thought of beet makes my stomach turn. It works wonders on anemia though. But it must be taken in moderation because my body is not used to working with so much blood, when I approach the boundaries of 10, I feel extreme exhaustion. The first time it happened, I had taken some medicinal herbs that my father had sent me from Cameroon. After feeling so tired and breathless, I called the hospital to see my physician. The first thing he did was run some test to determine the cause of my fatigue. He seemed so concerned when I left for the labs that I did not understand why he had a smile on his face when he came to me and told me that the blood test showed that I had a blood count that was almost to a 10, which happens very rarely unless I take home made beet juice.
In Africa, some families do not get blood transfusion, the preferred home remedy for anemia is a concoction of herbs or beets and additional high antioxidant fruits or legumes such as Strawberries and carrots. That's why at 25, I only had one blood transfusion. All the other blood transfusions I have had up to now have occured in the US. Some times, doctors did it because the situation did not give them any other option, but when I had been able to convince them to let me increase my blood count, I have always turned to a concoction of beet, carrot, and carrot juice.
After almost a month of hospitalization after a crisis, my bloodcount had dropped to four, the physicians attending to me wanted to keep me for a longer period of time because I was pregnant and still chronically sick. But I was so sick of staying in the hospital that I begged them to let me go, until the morning they discharged me, I was not sure whether they would go with my plan of getting out of the hospital. Nonetheless, they did. Under one condition, if my blood count was not any higher within two days, I would be readmitted. When I went home, my husband who has become a specialist in preparing my home remedies made me drink religiously my concoction of beet juice. When I returned to see my hematologist, and had some blood work done, he announced the news to me as if I had accomplished something quite spectacular. He told me my blood count was at 8 in just two days. It took me alsmost half an hour to get back to my car, as I was still in pretty bad pain and not strong enough to walk, I could not wait to tell my family the good news.
So there it is beet juice is the trick under my sleeve.
DISCLAIMER: DO NOT GO CRAZY WITH THE BEETS. TOO MUCH BEET MIGHT BEAT YOU INSTEAD. THIS IS NOT A PROFESSIONAL RECOMMENDATION, JUST SOMETHING MY FAMILY ALWAYS DID TO TREAT MY ANEMIA.
Nothing exciting has really happened. I was having some shoulder and back pain, and did not know what to do about it. I am trying not to take any medicine anymore, but the downside is that I often experience discomfort that I can't make disappear. I have been using more over the counter mentholated pathches, which kind of take the edge off my pain. Heating pads also help, especially in days when it been a bit too cold for me.
My husband has been telling me I have to work on taking my beet juice, but I took it so much as a kid that now just the thought of beet makes my stomach turn. It works wonders on anemia though. But it must be taken in moderation because my body is not used to working with so much blood, when I approach the boundaries of 10, I feel extreme exhaustion. The first time it happened, I had taken some medicinal herbs that my father had sent me from Cameroon. After feeling so tired and breathless, I called the hospital to see my physician. The first thing he did was run some test to determine the cause of my fatigue. He seemed so concerned when I left for the labs that I did not understand why he had a smile on his face when he came to me and told me that the blood test showed that I had a blood count that was almost to a 10, which happens very rarely unless I take home made beet juice.
In Africa, some families do not get blood transfusion, the preferred home remedy for anemia is a concoction of herbs or beets and additional high antioxidant fruits or legumes such as Strawberries and carrots. That's why at 25, I only had one blood transfusion. All the other blood transfusions I have had up to now have occured in the US. Some times, doctors did it because the situation did not give them any other option, but when I had been able to convince them to let me increase my blood count, I have always turned to a concoction of beet, carrot, and carrot juice.
After almost a month of hospitalization after a crisis, my bloodcount had dropped to four, the physicians attending to me wanted to keep me for a longer period of time because I was pregnant and still chronically sick. But I was so sick of staying in the hospital that I begged them to let me go, until the morning they discharged me, I was not sure whether they would go with my plan of getting out of the hospital. Nonetheless, they did. Under one condition, if my blood count was not any higher within two days, I would be readmitted. When I went home, my husband who has become a specialist in preparing my home remedies made me drink religiously my concoction of beet juice. When I returned to see my hematologist, and had some blood work done, he announced the news to me as if I had accomplished something quite spectacular. He told me my blood count was at 8 in just two days. It took me alsmost half an hour to get back to my car, as I was still in pretty bad pain and not strong enough to walk, I could not wait to tell my family the good news.
So there it is beet juice is the trick under my sleeve.
DISCLAIMER: DO NOT GO CRAZY WITH THE BEETS. TOO MUCH BEET MIGHT BEAT YOU INSTEAD. THIS IS NOT A PROFESSIONAL RECOMMENDATION, JUST SOMETHING MY FAMILY ALWAYS DID TO TREAT MY ANEMIA.
Tuesday, October 20, 2009
Fall is here
There is a cold sweeping through our area, we all got it in my home. But everyone is doing well now. Yesterday, I was delivered my oxygen tanks. Technology has changed for usre since 2003. Now, a machine pulls oxygen out of the air to fill the canisters as opposed to just having the oxygen tanks that need to be refilled every so often.
I saw my hematologist last week because I was having hip pain that lingered a bit longer than usual. Even after taking my pain killers, the pain would not recede. Thus, I called and requested to see my physician. Upon a CBC test result, she informed me my blood count was a bit low, I did not think it was that low. However,because I usually run around 8 or occasionally 9, my physician did not like that I my blood count was at 7. She asked me if I had ever been put on Hydrea. To which I responded yes, Nonethesless, I told her, I felt a lot of adverse effects from Hydrea I did not like. After being on Hydrea, I began experiencing a lot of chest pain, and one of the doctors I saw at the ER thought it was best if I stopped the medication. The chest pain never occured after I stopped taking the drug.
Therefore, my hematologist told me I needed to be put on the oxygen regimen at home. I am feeling much better, but I haven't had time to sit for second and breathe in the oxygen. It has been pretty hectic at school.
I have just finished my midterms and everything went well, but I came home tonight a bit disappointed becsuse I got a B in one of the classes. I was all in tears because I had really hoped to score an A. I think I cried because I was just tired and frustrated. I went to see one of the deans at my school for temperature control in the classroom. There are times when I go to school,but the rooms are kept at such low temperatures that my bones regardless of how many layers of clothing I have on begin to hurt. I usually just sit still and waits until class is over to get under a hot shower at home or take my medicine.
Getting sick at school has happened on several occasions. So, the dean told me it was very unlikely, the school was going to adjust the temperature because they want to make sure, the classroom was not also too hot for the other students. He said that maybe I just feel the cold a bit more,but I told him it was not the case because there are some other students who also complain about the cold temperature. I told him, unlike those students who go home ok, I don't. He assured me he was doing all he could to help me. I do not understand why sometimes, classromm are just so cold even in the winter, talk about energy savings.
I was just a bit annoyed today because at times, I do wish, I did not have to go through this. But then things could be worse. But hey, I should have the right to have my bad days and cry if I feel like it. From your first day in law school, the whole school emphasizes the importance of grades. So, it is very stressful to wait for the grades to come out after exams. I am in a better mood now, though, my husband told me not be beat myself up. I am over it.
In Christ
I saw my hematologist last week because I was having hip pain that lingered a bit longer than usual. Even after taking my pain killers, the pain would not recede. Thus, I called and requested to see my physician. Upon a CBC test result, she informed me my blood count was a bit low, I did not think it was that low. However,because I usually run around 8 or occasionally 9, my physician did not like that I my blood count was at 7. She asked me if I had ever been put on Hydrea. To which I responded yes, Nonethesless, I told her, I felt a lot of adverse effects from Hydrea I did not like. After being on Hydrea, I began experiencing a lot of chest pain, and one of the doctors I saw at the ER thought it was best if I stopped the medication. The chest pain never occured after I stopped taking the drug.
Therefore, my hematologist told me I needed to be put on the oxygen regimen at home. I am feeling much better, but I haven't had time to sit for second and breathe in the oxygen. It has been pretty hectic at school.
I have just finished my midterms and everything went well, but I came home tonight a bit disappointed becsuse I got a B in one of the classes. I was all in tears because I had really hoped to score an A. I think I cried because I was just tired and frustrated. I went to see one of the deans at my school for temperature control in the classroom. There are times when I go to school,but the rooms are kept at such low temperatures that my bones regardless of how many layers of clothing I have on begin to hurt. I usually just sit still and waits until class is over to get under a hot shower at home or take my medicine.
Getting sick at school has happened on several occasions. So, the dean told me it was very unlikely, the school was going to adjust the temperature because they want to make sure, the classroom was not also too hot for the other students. He said that maybe I just feel the cold a bit more,but I told him it was not the case because there are some other students who also complain about the cold temperature. I told him, unlike those students who go home ok, I don't. He assured me he was doing all he could to help me. I do not understand why sometimes, classromm are just so cold even in the winter, talk about energy savings.
I was just a bit annoyed today because at times, I do wish, I did not have to go through this. But then things could be worse. But hey, I should have the right to have my bad days and cry if I feel like it. From your first day in law school, the whole school emphasizes the importance of grades. So, it is very stressful to wait for the grades to come out after exams. I am in a better mood now, though, my husband told me not be beat myself up. I am over it.
In Christ
Saturday, September 26, 2009
Medical misconception
It is funny how most physicians especially those in the ER view people with Sickle Cell Anemia. I once read a few lines in which one physician said that patients with SCA go to the ER just to get a fix. The guy went on to say that the patient came in somewhat in pain, requested painkillers and as soon as he was administered the drug, said he was better and wanted to live. I get angry when I read such remarks. For, it is impossible for one to assess the level of pain that one is feeling, regardless of how clam they may appear. People with SCA anemia particularly are so used to pain that they can withstand an incredible amount of pain without necessarily showing discomfort.
I went to the ER a few weeks ago, I had decided to stop taking Dilaudid to see if I could learn to live with my constant back and shoulder pain and was experiencing withdrawal. Instead of weaning myself, I abruptly stopped thinking I could just do it like I had done in the past after a crisis. However, the discomfort that I began feeling was undescribable. I have had that feeling several times when after a long crisis I decided to stop taking my painkillers as opposed to tappering off like my doctors always advised me. My husband called the hospital to know what we needed to do to ease my discomfort, the person at the end of the line told him to take me to the ER after he had describe my symptoms; shortness of breath, chills, headaches, nausea, restless leg syndrome, and chest pain.
After waiting for almost an hour to be seen, I was finally ushered into a room where I waited for the physician. I was feeling like I had been beaten, my whole body was aching and I was feeling pretty bad. When I told the physician why I was there, he first told me I should not have stopped the Dilaudid without tappering off, nonetheless he told me you don't look like you are in distress, your blood pressure is normal..." All the medical staff that was present there that night kept asking me questions as if they were questioning my own assessment of the discomfort I was feeling. My husband could see that I looked like I usually do when I am in pain, he had told me earlier I looked pretty pale, but somehow, the physician and nurse thought I was not in any kind of discomfort. The nurse added after the doctor on call left "I do not know why you guys came here, this guy is going to make his buck on you" "you should never go without any medicine" "your blood pressure does not indicate you are in any kind of stress, you look like you are rested...." In a copy of my report that I got from the physician on call, he wrote opiate dependency. I was furious when I read the note to me the fact that he did not qualify my problem bothered me deeply, but my husband told me not to worry about it.
In addition, I was furious because anyone who knows me, especially doctors that I have had for years know I have never had any problem getting off painkillers when I did not need them anymore. Furthermore, I am a very controlling person, I can never accept being under the dominion of a foreign substance. Nonetheless, I could not explain it to those accusatory eyes that wrote "opiate dependency" on my report without describing or qualifying the dependency.
The following week. I went back to the hospital and planned out along with my doctor how to tapper off Dilaudid. I have been doing well so far. Sometimes I try to go too fast. She gave me a six week program but I am trying to do it in less than three weeks, it's unrealistic, but I live by faith. God willing, I will do it.
I has not been easy stopping taking Dilaudid because my back pain and shoulder pain are still constant. They are making me miserable, but I feel like taking Dilaudid is just putting a band-aid on a wound. If the Dilaudid is not going to cure my problem, I do not see any use in taking it Even if it gives me instant relief from the pain. I am hoping and praying to get a miraculous healing just like I did with my hips.
There are two kind of opiate dependencies; psychological dependency and physical dependency. Somehow, because I had been taking Dilaudid for a few months, my body built up resistance to the effectiveness of the Dilaudid while at the same time getting used to the drug, that's what they call physical dependency. When SC patients have crisis, they (we) are put on painkillers and when we recover we have to get off the drugs and it is never an easy process. My way of dealing with it had been to just stop taking my medicine without tappering off ( which I do not advice anyone to do) it can be deadly, so have I been told. I am an impatient person, waiting longs days and weeks to get off painkillers to me seem overbearing, I would rather do it in less time regardless of how much discomfort I am in. That's why the medical misconception is that SC patients are addicted to painkilers. I have met so many people addicted to painkillers and none of them has SCA, their addiction is psychological.
That had not been the first night that people did not believe I was in pain because I had not been screaming my lungs out.
I remember when I was in labor with my third child. Because I was still in the middle of a Sickle Cell crisis, my OB/GYN did not want me to forego the epidural, he had told me I needed to get one in order to lower the stress level in my body. Although I was pretty confused about what pain I was feeling (my crisis was not over), I believe I felt the pain of labor. My husband had informed the doctor on call and the nurses about my OB/GYN recommendations, however, when it was time to be administered the epidural, the anesthesiologist kept running to the other women who were also in labor. The anesthesiologist had me wait longer than my doctor wanted me to, the hospital staff kept telling my husband they had to relieve the other women's pain. The woman who had been screaming bloody murder got her epidural before I did, they kept running to all the other screaming women and only got to me when I threatened them. Then I told my husband that I should probably learn to scream and make a scene when I am in pain so that I could readily get the help that I need. The proof is that the only times I had been quickly admitted into a Room at the ER were when I got to the hospital in tears because the pain had become so unbearable I could not be brave anymore.
Because there is such a disconnect between patients with SCA and the medical community, most physicians do not truly understand what we go through. Our bravery or courage is seen as lack of pain.
I went to the ER a few weeks ago, I had decided to stop taking Dilaudid to see if I could learn to live with my constant back and shoulder pain and was experiencing withdrawal. Instead of weaning myself, I abruptly stopped thinking I could just do it like I had done in the past after a crisis. However, the discomfort that I began feeling was undescribable. I have had that feeling several times when after a long crisis I decided to stop taking my painkillers as opposed to tappering off like my doctors always advised me. My husband called the hospital to know what we needed to do to ease my discomfort, the person at the end of the line told him to take me to the ER after he had describe my symptoms; shortness of breath, chills, headaches, nausea, restless leg syndrome, and chest pain.
After waiting for almost an hour to be seen, I was finally ushered into a room where I waited for the physician. I was feeling like I had been beaten, my whole body was aching and I was feeling pretty bad. When I told the physician why I was there, he first told me I should not have stopped the Dilaudid without tappering off, nonetheless he told me you don't look like you are in distress, your blood pressure is normal..." All the medical staff that was present there that night kept asking me questions as if they were questioning my own assessment of the discomfort I was feeling. My husband could see that I looked like I usually do when I am in pain, he had told me earlier I looked pretty pale, but somehow, the physician and nurse thought I was not in any kind of discomfort. The nurse added after the doctor on call left "I do not know why you guys came here, this guy is going to make his buck on you" "you should never go without any medicine" "your blood pressure does not indicate you are in any kind of stress, you look like you are rested...." In a copy of my report that I got from the physician on call, he wrote opiate dependency. I was furious when I read the note to me the fact that he did not qualify my problem bothered me deeply, but my husband told me not to worry about it.
In addition, I was furious because anyone who knows me, especially doctors that I have had for years know I have never had any problem getting off painkillers when I did not need them anymore. Furthermore, I am a very controlling person, I can never accept being under the dominion of a foreign substance. Nonetheless, I could not explain it to those accusatory eyes that wrote "opiate dependency" on my report without describing or qualifying the dependency.
The following week. I went back to the hospital and planned out along with my doctor how to tapper off Dilaudid. I have been doing well so far. Sometimes I try to go too fast. She gave me a six week program but I am trying to do it in less than three weeks, it's unrealistic, but I live by faith. God willing, I will do it.
I has not been easy stopping taking Dilaudid because my back pain and shoulder pain are still constant. They are making me miserable, but I feel like taking Dilaudid is just putting a band-aid on a wound. If the Dilaudid is not going to cure my problem, I do not see any use in taking it Even if it gives me instant relief from the pain. I am hoping and praying to get a miraculous healing just like I did with my hips.
There are two kind of opiate dependencies; psychological dependency and physical dependency. Somehow, because I had been taking Dilaudid for a few months, my body built up resistance to the effectiveness of the Dilaudid while at the same time getting used to the drug, that's what they call physical dependency. When SC patients have crisis, they (we) are put on painkillers and when we recover we have to get off the drugs and it is never an easy process. My way of dealing with it had been to just stop taking my medicine without tappering off ( which I do not advice anyone to do) it can be deadly, so have I been told. I am an impatient person, waiting longs days and weeks to get off painkillers to me seem overbearing, I would rather do it in less time regardless of how much discomfort I am in. That's why the medical misconception is that SC patients are addicted to painkilers. I have met so many people addicted to painkillers and none of them has SCA, their addiction is psychological.
That had not been the first night that people did not believe I was in pain because I had not been screaming my lungs out.
I remember when I was in labor with my third child. Because I was still in the middle of a Sickle Cell crisis, my OB/GYN did not want me to forego the epidural, he had told me I needed to get one in order to lower the stress level in my body. Although I was pretty confused about what pain I was feeling (my crisis was not over), I believe I felt the pain of labor. My husband had informed the doctor on call and the nurses about my OB/GYN recommendations, however, when it was time to be administered the epidural, the anesthesiologist kept running to the other women who were also in labor. The anesthesiologist had me wait longer than my doctor wanted me to, the hospital staff kept telling my husband they had to relieve the other women's pain. The woman who had been screaming bloody murder got her epidural before I did, they kept running to all the other screaming women and only got to me when I threatened them. Then I told my husband that I should probably learn to scream and make a scene when I am in pain so that I could readily get the help that I need. The proof is that the only times I had been quickly admitted into a Room at the ER were when I got to the hospital in tears because the pain had become so unbearable I could not be brave anymore.
Because there is such a disconnect between patients with SCA and the medical community, most physicians do not truly understand what we go through. Our bravery or courage is seen as lack of pain.
Wednesday, September 23, 2009
Guarding my secret
Today was a bit hard on me. My body always reacts negatively to the variation of temperature. I often joke my body is my meteo. When the weather abruptly switches from hot to cold and then from cold to hot, or when it is going to rain, I have pain in my bones. I had more pain today then yesterday because the sky looked overcast. My back hurt quite a bit and I experienced fatigue, thank goodness I did not have class tonight.
I am sitting on my bed trying to get ready for tomorrow's lecture and working on my outlines, but I can't sit still. I am fidgeting as if my movements could cast the pain out of my body. I often have high spirits but when I am trying to study, and can't concentrate on my task because the pain in my back is interferring with my ability to read and process information and can't help but get angry at my body. It feels like a betrayal. I wished my body would just obey my command and work with me. I like to think that God has bestowed so many blessings upon my person, nonetheless when I hurt, it is difficult for me to fight back my frustration at the constant pain I experience on a daily basis. This feeling never lasts, it only crosses my mind for a few seconds then I am back to my joyful self.
To me any pain that does not necessitate an hospitalization or a trip to the ER is not a big deal. I feel such an intense feeling of gratitude when every morning I get my children ready for school and am able to take them to school. To me everything is well if I can make them dinner or bake a cake or cookies for them. Today, when I picked up my kids from school, I was looking pretty pale from all the discomfort that I was feeling my oldest daughter asked me "Mommy are you okay? You look sick." I replied "I'm okay honey, I am just a bit tired." My answer did not seem to satisfy her, she kept asking whether I was alright, then I told her in a little bit I would be fine. She kept looking at me intensely like she usually does when I don't feel well. I smiled at her and she stopped her inquiring looks.
I always try my best not to let my children see when I am in pain, I don't want them to remember that their mom was sick. It is hardest in the morning. 9 times out of 10, I wake up with pain, but before getting out of my bedroom to get my children ready for school, I always make sure I have a smile on my face regardless of how bad I am feeling. I could say that life has trained me well. Since I was a little girl, I learned to smile when pain was tearing through my bones, I learned to sit still in class with pain. I carried that habit with me into adulthood. I also did it because of the shame I felt each time I became sick. Sometimes I would rather suffer inside than tell a soul that I was not feeling well and needed to be taken to the hospital.
In my country, having Sickle Cell Anemia is seen as a shame that families try to hide. Because my culture thought me to be ashamed of having SCA, hiding my pain became a way of guarding my secret. To this day, I still have friends who do not know I have SCA. When I was little,my mother used to tell me not to cry because she did not want the neighbors to know I was having a crisis. In my country SCA is so prevailant that people can usually tell when someone suffers from the illness.
I remember the first Christmas I spent with my in laws. My husband and I had been visiting his family. I began feeling a throbbing pain in my legs the day after we arrived at his mother's house. It was very cold, I had complained about the cold in the house, but after she failed to acknowledge my complaint, I decided not to bother her with adjusting the heat. I kept taking tylenol hoping that the pain would go away, even though I knew it was the kind of pain that lingers until it becomes a bad crisis and I also knew Tylenol would not cut it. But I did not want my husband to see me sick. We had just been married, I also did not want his family to see me sick. I kept that secret to myself for a few days. I was very scared not of my potential crisis, but of the embarrassment I would feel if his family found out I was having pain. I remember being so embarrassed the first time my father in law mentioned my illness. I was so ashamed I felt like hiding, I did not want to discuss it with him or anyone else. That had always been my way, not dicussing my illness with anyone.
On Christmas day, we went to my husband's family gathering, I was in misery, the pain was becoming so unbearable I could hardly walk, but I faked being alright. But, each step I took felt like a knife cutting through my legs. I still did not disclose my discomfort to a soul not even my husband. I had just been so used to hiding my crisis to the world that I did not realize that my husband was a part of me. I just did not want him to see me having a crisis, that shameful thing that caused me to feel undesirable. After a few hours, we drove to my father in law's house. As soon as we got there, I knew I was in trouble, the pain was so hard it was hard for me to fight back tears. I went straight to the bathroom, took the hottest shower my skin could possibly whisstand without being burn. As I washed tears began rolling down my cheeks. Back then I was still pretty mad at the Lord for taking my brother and my sister but I said a prayer. I said "Please dear Lord, don't let me have a crisis here, please not here, not in front of my in laws." I got out of the shower and went directly in the guest room where we had our stuff. My daughter was just two weeks old, I think my husband had her or somebody else. I was in so much pain that I could not think straight. I laid down on the bed, my husband came in and found me crying, he asked me what was wrong. I could not lie anymore and I told him I was having a crisis. Even though I was in pain, the shame I felt in that moment was undescribable. He left and told his dad's girlfriend they needed to get me to the hospital right away becasuse I was having a crisis. In the van that took me to the hospital, I covered my face, I did not wnat anyone to see my pain, my tears,and my shame. I cried becasuse I was hurting so bad, but I also cried because they had seen me like that in all my vulnefrability. I was mad at God for allowing my body to expose my shame when I was trying to guard my weakness. The two weeks that followed are a blur because I was dosed up with heavy duty painkillers. The only things I remember are cries, pain, sleep, pain sleep. I missed my daughter so much I thought I was going to go crazy. At two weeks old, she was sleeping at night without her mommy to nurse her to sleep. That thought did not help, I cried until the painkillers nursed me to sleep.
I think it was the first time the reality of my illness hit me with being a mother. Before I never really thought about what could happen if I did not make it. Until I met my husband, I never quite felt loved or needed, I always thought no one would truly miss me, but then, I realized my daughter would miss me horribly. I spent sleepless nights crying over my poor child. Was I selfish for bringing her into life knowing about my medical condition? Was I no different than my mother who I was resented over the fact she kept having children knowing they could end up with SCA? (I am the first of seven) I asked myself a thousand different questions. I stopped crying when I realized she was my gift from God and that he sent her in my life for me to enjoy her. If he did not want me to enjoy motherhood and be there for my children, he would not have made me a mother. I decided to simply love and not question the future. My husband once told me when I was having another bad crisis. "God did not send me to Africa to meet you and then take you away, you are going to make it." I did make it.
My husband tells me God gave me this illness to shape my personality. Sometimes I agree with him other times I don't. I know that being constantly sick has made me much stronger than I would have been have I not experienced all the tribulation my illness has made me go through. Furthermore, I have an incredible ability to persevere in my difficulties regardless of how unsurmontable they may appear at the time, for I know God always see us through.
My faith helps me see the end of my trouble each time I am faced with a new challenge. All orthopedic surgeons I have seen up to date have all been quick at telling me to get surgery to help cure or resolve the Avascular Necrosis I have on both shoulders . At some point when the pain in my shoulders's joint seemed unbearable, I gave surgery my thought and considered going through with the procedure.
At the last minute, the Lord put a wonderful orthopedist surgeon on my way and after his thorough examination of my case, he told me he would not feel comfortable opearting on my shoulders given a number of circumstances. For one, he told me that I was way to young to have a shoulder replacement sugery. He told me in my particular case I needed the humeral head and the glenoid replaced. However that was not all, there was a catch. A shoulder replacement surgery is not a one time procedure, for often times it is necessary to replace the prostesis a few years down the line, which means putting me under, going in removing the former prostesis or implant materials and installing new ones. By doing that, each time they would go in they would remove more bone mass in order to fit me with a new implant material. (Just hearing him talk about the whole thing me my stomach pretty upset). Then he told me given that I have low oxygen from Sickle Cell Anemia, putting me under involves some serious risks on its own. But the one factor that made me decide not to undergo the surgery was the recovery process. I have three kids and my youngest one (3) is one the laziest kid I have ever seen. She only wants to be carried around and I just did not see how I could get away with not carrying her. I was not sure I could be able to function without being able to use my hands.
So far I am happy I did not undergo the surgery. I learned to live with the pain, it is quite uncomfortable at times, but I would take it over the pain I get from my crisis.
In Christ
I am sitting on my bed trying to get ready for tomorrow's lecture and working on my outlines, but I can't sit still. I am fidgeting as if my movements could cast the pain out of my body. I often have high spirits but when I am trying to study, and can't concentrate on my task because the pain in my back is interferring with my ability to read and process information and can't help but get angry at my body. It feels like a betrayal. I wished my body would just obey my command and work with me. I like to think that God has bestowed so many blessings upon my person, nonetheless when I hurt, it is difficult for me to fight back my frustration at the constant pain I experience on a daily basis. This feeling never lasts, it only crosses my mind for a few seconds then I am back to my joyful self.
To me any pain that does not necessitate an hospitalization or a trip to the ER is not a big deal. I feel such an intense feeling of gratitude when every morning I get my children ready for school and am able to take them to school. To me everything is well if I can make them dinner or bake a cake or cookies for them. Today, when I picked up my kids from school, I was looking pretty pale from all the discomfort that I was feeling my oldest daughter asked me "Mommy are you okay? You look sick." I replied "I'm okay honey, I am just a bit tired." My answer did not seem to satisfy her, she kept asking whether I was alright, then I told her in a little bit I would be fine. She kept looking at me intensely like she usually does when I don't feel well. I smiled at her and she stopped her inquiring looks.
I always try my best not to let my children see when I am in pain, I don't want them to remember that their mom was sick. It is hardest in the morning. 9 times out of 10, I wake up with pain, but before getting out of my bedroom to get my children ready for school, I always make sure I have a smile on my face regardless of how bad I am feeling. I could say that life has trained me well. Since I was a little girl, I learned to smile when pain was tearing through my bones, I learned to sit still in class with pain. I carried that habit with me into adulthood. I also did it because of the shame I felt each time I became sick. Sometimes I would rather suffer inside than tell a soul that I was not feeling well and needed to be taken to the hospital.
In my country, having Sickle Cell Anemia is seen as a shame that families try to hide. Because my culture thought me to be ashamed of having SCA, hiding my pain became a way of guarding my secret. To this day, I still have friends who do not know I have SCA. When I was little,my mother used to tell me not to cry because she did not want the neighbors to know I was having a crisis. In my country SCA is so prevailant that people can usually tell when someone suffers from the illness.
I remember the first Christmas I spent with my in laws. My husband and I had been visiting his family. I began feeling a throbbing pain in my legs the day after we arrived at his mother's house. It was very cold, I had complained about the cold in the house, but after she failed to acknowledge my complaint, I decided not to bother her with adjusting the heat. I kept taking tylenol hoping that the pain would go away, even though I knew it was the kind of pain that lingers until it becomes a bad crisis and I also knew Tylenol would not cut it. But I did not want my husband to see me sick. We had just been married, I also did not want his family to see me sick. I kept that secret to myself for a few days. I was very scared not of my potential crisis, but of the embarrassment I would feel if his family found out I was having pain. I remember being so embarrassed the first time my father in law mentioned my illness. I was so ashamed I felt like hiding, I did not want to discuss it with him or anyone else. That had always been my way, not dicussing my illness with anyone.
On Christmas day, we went to my husband's family gathering, I was in misery, the pain was becoming so unbearable I could hardly walk, but I faked being alright. But, each step I took felt like a knife cutting through my legs. I still did not disclose my discomfort to a soul not even my husband. I had just been so used to hiding my crisis to the world that I did not realize that my husband was a part of me. I just did not want him to see me having a crisis, that shameful thing that caused me to feel undesirable. After a few hours, we drove to my father in law's house. As soon as we got there, I knew I was in trouble, the pain was so hard it was hard for me to fight back tears. I went straight to the bathroom, took the hottest shower my skin could possibly whisstand without being burn. As I washed tears began rolling down my cheeks. Back then I was still pretty mad at the Lord for taking my brother and my sister but I said a prayer. I said "Please dear Lord, don't let me have a crisis here, please not here, not in front of my in laws." I got out of the shower and went directly in the guest room where we had our stuff. My daughter was just two weeks old, I think my husband had her or somebody else. I was in so much pain that I could not think straight. I laid down on the bed, my husband came in and found me crying, he asked me what was wrong. I could not lie anymore and I told him I was having a crisis. Even though I was in pain, the shame I felt in that moment was undescribable. He left and told his dad's girlfriend they needed to get me to the hospital right away becasuse I was having a crisis. In the van that took me to the hospital, I covered my face, I did not wnat anyone to see my pain, my tears,and my shame. I cried becasuse I was hurting so bad, but I also cried because they had seen me like that in all my vulnefrability. I was mad at God for allowing my body to expose my shame when I was trying to guard my weakness. The two weeks that followed are a blur because I was dosed up with heavy duty painkillers. The only things I remember are cries, pain, sleep, pain sleep. I missed my daughter so much I thought I was going to go crazy. At two weeks old, she was sleeping at night without her mommy to nurse her to sleep. That thought did not help, I cried until the painkillers nursed me to sleep.
I think it was the first time the reality of my illness hit me with being a mother. Before I never really thought about what could happen if I did not make it. Until I met my husband, I never quite felt loved or needed, I always thought no one would truly miss me, but then, I realized my daughter would miss me horribly. I spent sleepless nights crying over my poor child. Was I selfish for bringing her into life knowing about my medical condition? Was I no different than my mother who I was resented over the fact she kept having children knowing they could end up with SCA? (I am the first of seven) I asked myself a thousand different questions. I stopped crying when I realized she was my gift from God and that he sent her in my life for me to enjoy her. If he did not want me to enjoy motherhood and be there for my children, he would not have made me a mother. I decided to simply love and not question the future. My husband once told me when I was having another bad crisis. "God did not send me to Africa to meet you and then take you away, you are going to make it." I did make it.
My husband tells me God gave me this illness to shape my personality. Sometimes I agree with him other times I don't. I know that being constantly sick has made me much stronger than I would have been have I not experienced all the tribulation my illness has made me go through. Furthermore, I have an incredible ability to persevere in my difficulties regardless of how unsurmontable they may appear at the time, for I know God always see us through.
My faith helps me see the end of my trouble each time I am faced with a new challenge. All orthopedic surgeons I have seen up to date have all been quick at telling me to get surgery to help cure or resolve the Avascular Necrosis I have on both shoulders . At some point when the pain in my shoulders's joint seemed unbearable, I gave surgery my thought and considered going through with the procedure.
At the last minute, the Lord put a wonderful orthopedist surgeon on my way and after his thorough examination of my case, he told me he would not feel comfortable opearting on my shoulders given a number of circumstances. For one, he told me that I was way to young to have a shoulder replacement sugery. He told me in my particular case I needed the humeral head and the glenoid replaced. However that was not all, there was a catch. A shoulder replacement surgery is not a one time procedure, for often times it is necessary to replace the prostesis a few years down the line, which means putting me under, going in removing the former prostesis or implant materials and installing new ones. By doing that, each time they would go in they would remove more bone mass in order to fit me with a new implant material. (Just hearing him talk about the whole thing me my stomach pretty upset). Then he told me given that I have low oxygen from Sickle Cell Anemia, putting me under involves some serious risks on its own. But the one factor that made me decide not to undergo the surgery was the recovery process. I have three kids and my youngest one (3) is one the laziest kid I have ever seen. She only wants to be carried around and I just did not see how I could get away with not carrying her. I was not sure I could be able to function without being able to use my hands.
So far I am happy I did not undergo the surgery. I learned to live with the pain, it is quite uncomfortable at times, but I would take it over the pain I get from my crisis.
In Christ
Tuesday, September 22, 2009
Introduction
My name is Lily. I immigrated to the United Stated a few years ago from Cameroon. I am married and I have three daughters, 8, 6, and 3. I am working on getting a doctorate in law. It's always been my dream to get a doctorate. I used to think I would get one in medicine, but my life lead me in a different direction. I love what I am studying, I can't think of doing anything else beside law.
My life as it is, is perfect despite my daily struggle with Sickle Cell Anemia (SCA). Sickle cell anemia or Sickle Cell Disease is a blood disorder caused by sickled hemoglobin. When it is cold or too hot, the cold or any other trigger constricts the cappillaries. The constriction cause the patient to experience chronic pain and the result could be damage in the tissues and organs. It is also possible to get a SC crisis for no apparent reason. After my last crisis, my hematologist realized I could not get any more blood transfusions because each time I get one a day or two later I go into a crisis. Apparently I have a very aggressive immune system. Maybe it is good maybe it is bad. That's what God gave me. My younger sister passed away after getting a blood transfusion.
SCA primarily affects people of African descent. However, the misconception is that it does not affect people of other races, unfortunatly, people in some portion of Greece, India, Italy, the Middle East, and other part of the world are affected as well.
Most people who see me don't know, they all usually tell me "you are so beautiful" "how do you manage to keep so fit with three children." I usually smile, thank them for their "compliment" little do they know the pain that I go through every day. I never really saw myself still going to school at 34, but the lesson I have learned in my life is that it is not when you finish that matters, but how you finish. It took me quite some time to understand it and make peace with it. I still get frustrated when sometimes I can't go to class because I'm in pain. I wished I could just do the things that I want to do in life without my health interferring.
Today, I am not feeling well. I decided three weeks ago, that I do not want to spend the rest of my life fighting off pain. I called my hematologist and told her I wanted to stop taking Dilaudid for the pain I get from my crisis, the recurrent back pain, and the pain I get from my shoulders. I haven't had a fixed diagnosis of what is wrong with my back. I have had three different diagnosis from physicians, which added to my frustrations.
My back problems began with my last crisis that occured in 2006. Two hematologists told me the problem might reside in my spinal cord. One told me after hours of MRIs that I had spinal stenosis, the last one told me I had a few bulging discs that might be the cause of my pain. The problem in my shoulders were fairly easy to diagnose. One look at my X-ray films and anyone could tell that my bones in those areas have taken a serious beating.
Because I have a very high tolerance for pain, I thought I would just ignore my back and shoulder pain. But the problem is that while I am trying to get off Dilaudid I sometimes get these minor crisis and I just sit around with pain not wanting to give in to my discomfort. But then when I fear it might escalate into something more more serious, I have to take my medicine and drink plenty of fluids.
Over the years, I have learned to read my body like a book. Sometimes when I get these minor crisis, my husband asks me whether we should go to the ER. I usually tell him "it does not seem like it going to be a big one." I just take care of myself then. I have only been wrong once. That was before my last crisis in 2006, the pain had been lingering for hours. I sat around with it thinking it would just go away, until my husband came home and saw me looking very uncomfortable. By the time we got to the hospital I could not even walk anymore. For, pain had taken hold of my whole body. As I screamed and twisted with pain, I could not help wondering why I did not take any medicine while I could still control the pain.
God Bless. See you tomorrow.
My life as it is, is perfect despite my daily struggle with Sickle Cell Anemia (SCA). Sickle cell anemia or Sickle Cell Disease is a blood disorder caused by sickled hemoglobin. When it is cold or too hot, the cold or any other trigger constricts the cappillaries. The constriction cause the patient to experience chronic pain and the result could be damage in the tissues and organs. It is also possible to get a SC crisis for no apparent reason. After my last crisis, my hematologist realized I could not get any more blood transfusions because each time I get one a day or two later I go into a crisis. Apparently I have a very aggressive immune system. Maybe it is good maybe it is bad. That's what God gave me. My younger sister passed away after getting a blood transfusion.
SCA primarily affects people of African descent. However, the misconception is that it does not affect people of other races, unfortunatly, people in some portion of Greece, India, Italy, the Middle East, and other part of the world are affected as well.
Most people who see me don't know, they all usually tell me "you are so beautiful" "how do you manage to keep so fit with three children." I usually smile, thank them for their "compliment" little do they know the pain that I go through every day. I never really saw myself still going to school at 34, but the lesson I have learned in my life is that it is not when you finish that matters, but how you finish. It took me quite some time to understand it and make peace with it. I still get frustrated when sometimes I can't go to class because I'm in pain. I wished I could just do the things that I want to do in life without my health interferring.
Today, I am not feeling well. I decided three weeks ago, that I do not want to spend the rest of my life fighting off pain. I called my hematologist and told her I wanted to stop taking Dilaudid for the pain I get from my crisis, the recurrent back pain, and the pain I get from my shoulders. I haven't had a fixed diagnosis of what is wrong with my back. I have had three different diagnosis from physicians, which added to my frustrations.
My back problems began with my last crisis that occured in 2006. Two hematologists told me the problem might reside in my spinal cord. One told me after hours of MRIs that I had spinal stenosis, the last one told me I had a few bulging discs that might be the cause of my pain. The problem in my shoulders were fairly easy to diagnose. One look at my X-ray films and anyone could tell that my bones in those areas have taken a serious beating.
Because I have a very high tolerance for pain, I thought I would just ignore my back and shoulder pain. But the problem is that while I am trying to get off Dilaudid I sometimes get these minor crisis and I just sit around with pain not wanting to give in to my discomfort. But then when I fear it might escalate into something more more serious, I have to take my medicine and drink plenty of fluids.
Over the years, I have learned to read my body like a book. Sometimes when I get these minor crisis, my husband asks me whether we should go to the ER. I usually tell him "it does not seem like it going to be a big one." I just take care of myself then. I have only been wrong once. That was before my last crisis in 2006, the pain had been lingering for hours. I sat around with it thinking it would just go away, until my husband came home and saw me looking very uncomfortable. By the time we got to the hospital I could not even walk anymore. For, pain had taken hold of my whole body. As I screamed and twisted with pain, I could not help wondering why I did not take any medicine while I could still control the pain.
God Bless. See you tomorrow.
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