Hello long time no talk! Though there is only a small group of you guys on my page I really feel obligated to keep up with my posts and I have not been doing a good job with that. I do apologize. But you guys aren't sending me any questions or wanting to know anything and honestly its getting me discouraged :(. Just to catch you up, the past few months have been hectic. I had been doing so well in terms of not being hospitalized (it had been about 4 months or so which was a long time compared to the frequency I had been experiencing prior to that hospitalization hiatus) and then I got really sick and ended up being rushed to FMC. I was in the ICU for a little over 2 weeks and then was in a regular room. I spent 29 days in FMC hospital in which I received 22 (TWENTY-TWO!!!) blood transfusions. I got out and by the next day I was following up and my doctor had me rushed to BG hospital where I spent roughly 30 (THIRTY!!!) days and had 7 more blood transfusions. So I get out and over the course of the next day and a half my breathing get progressively worse and I develop a congested cough. Go to get it checked out and the doc says "Congratulations you have pneumonia". I was at 77% oxygen on room air (which is really low) so he had me rushed back to BG hospital, where I spent 6 (not so bad) days and got 3 more blood transfusions. So in the course of about 2months and 1 week straight (pretty much) of hospitalization I received 32 blood transfusions, gained another diagnosis (pulmonary hypertension, if you have some advice or are dealing with it pls contact me)and learned my blood is stubborn and refuses to stay up and stable. All the while I just kept thinking we (YES WE not just ME lol) have to change the face of sickle cell. 20,000 people die from SCD each year and yet there are still NO commercials, NO billboards, NO resources, NO media coverage, NO consistent fundraising or acknowledgement. It gets swept under the rug like it is not even relevant. If ONE person dies that one too many, and you mean to tell me 20 THOUSAND die and we don't even get put on the map. Ironic that its a minority frequented disease (not turning this into the color game but you have to admit the reality of the situation). There's more support for things that don't even happen in America or for diseases that only affect 1% of the population. So I want to really get this advocacy initiative up and running. I'm talking FREQUENT BLOGS that start dialogue and gets following. I want to develop loyal followers who are willing to support and become sickle cell soldiers whether they have the disease or not. VIDEOS of how we get treated (or mistreated) in hospitals. RECORDINGS of a crisis beginning to end. INTERVIEWS with sicklers and medical personnel. PERFORMANCE POEMS that raise awareness. WE DESERVE TO LIVE TOO and to have a BETTER QUALITY OF LIFE and CHANCE at survival. So PLEASE tell your family and friends and classmates and colleagues (EVEN STRANGERS) about this blog BLOODLINES, post the link up on your personal social networks to share and promote it. SUBSCRIBE and FRIEND me on youtube. My page/channel is SweetVenom07. Find me on FACEBOOK and friend me (Jasmine Bailey). FOLLOW me on twitter @scdsoldier. ASK questions, personal or scientific in nature. Start he dialogue, keep it going. Keep promoting and spreading the links and pushing for this. Not just for me or just for yourself but for the people who don't have the courage to speak up or don't know the words to say or most of all for the one's who've lost the ability to have a VOICE at all because they've LOST THEIR LIFE. Please!!! Below, I'm going to post a link to all of my social networks so you can do your part and help. Thank you :)
FACEBOOK: http://www.facebook.com/#!/profile.php?id=520574714
YOUTUBE: http://www.youtube.com/user/SweetVenom07?feature=mhee
TWITTER: http://twitter.com/#!/scdsoldier
**Now there is no excuse, there are the links. Tell me what you want to see, what you want to hear, know or talk about and I'll get on it.**
Saturday, November 26, 2011
Tuesday, March 1, 2011
Testimony to tell :)
Sometimes we don’t see how far we’ve come, or realize how much worse things could be. I usually try to keep this in mind to keep myself encouraged and thinking positive; but, my thoughts can stray onto the shores of negativity from time to time—hey I’m human. BUT, today a mirror was held in front of me that forced me to see the reality of my situation and that is when this testimony was born. It was like a light bulb had clicked.
I’ve been dealing with sickle cell disease my whole life. In and out of the hospital, IV’s, pills, blood transfusions, pain and all of the other un-pleasantries that come along with the territory of living with a chronic illness. Sitting here in the hospital bed I was reflecting and it was one of those times that I let my circumstance get the best of me. I felt as though I’d take a step forward and 2 back; progress then fall back. I felt as if I wasn’t making the progress I wanted in the time frame I wanted to. And since this ordeal is a common occurrence to me, I’d grown use to it and started taking my life for granted…thinking “just another day another hospital visit”, “another crisis, just life with sickle cell”. However…
My hematologist walked in and noticed that I was flustered and she immediately suggested I have patience and reminded me that this is a process and I’m not doing anything wrong. She said that crisis come unpredictably and the important thing is to think positive. I told her I was not content with my process and this was the moment that mirror was put in front of me, when she said: “You’ve come a LONGGGG way. You may not be where you want but it could be A LOT worse. When I met you, I thought in my head ‘oh my God, this little girl is going to die’. I seriously thought that. I did not tell you that, but that is what I figured based on how you were doing. And look at where you are now, nowhere near that. You’ve come a long way and can go so much further”.
WOW. I started working with her less than a year ago (about 8 months). I was in the Cardiovascular Intensive Care Unit—speeding heartbeat, one side not beating at all, lungs filling with fluid, about 900mL of fluid compressing my heart and lungs, low hemoglobin, literally unable to speak because it took too much oxygen (I was writing things down on notecards to communicate). They were running test after test that they seemed to just get worse. They wanted to sedate me and put a tube down my throat to help me breathe but I refused. They then suggested life support and told me eventually my body would tire from trying to breathe and I’d go into cardiac and pulmonary arrest. I got through this crisis after a long 3 weeks in the hospital and a few procedures later. I brushed it off as just a severe crisis. But today I realized I could have been dead. Point blank no sugar coat, I could’ve been 6 feet under but I’m alive and for the most part well. I may not be out doing everything I want but look how far I’ve gotten because of God!
I say all of that to say this: take a look at the positive side. The bright side. The silver lining. The greener grass. Perspective dictates it all. You can choose the negative route and yield negative results--- OR you can choose the positive route and recognize/acknowledge your progress. And if you can make it through once, then you can do it again and you see that eventually you’ll be where you SHOULD be. Notice I didn’t say where you WANT to be but where you SHOULD be; because what we want doesn’t always coincide with what is in God’s will and that’s what matters. So take my story to fuel yourself, encourage yourself, inspire yourself, and to see what God can do (ANYTHING). No matter the diagnoses, the prognosis, the report, the conclusion—its what He says it is. Thank God. Be blessed.
P.S. : If you’re going through anything and need someone to talk to just to get it off your chest or just someone to assure you things will be ok or encourage yourself, drop by my inbox or comment or if you have my number call or text. I want to pass on this feeling.
-Sickle Cell Soldier
I’ve been dealing with sickle cell disease my whole life. In and out of the hospital, IV’s, pills, blood transfusions, pain and all of the other un-pleasantries that come along with the territory of living with a chronic illness. Sitting here in the hospital bed I was reflecting and it was one of those times that I let my circumstance get the best of me. I felt as though I’d take a step forward and 2 back; progress then fall back. I felt as if I wasn’t making the progress I wanted in the time frame I wanted to. And since this ordeal is a common occurrence to me, I’d grown use to it and started taking my life for granted…thinking “just another day another hospital visit”, “another crisis, just life with sickle cell”. However…
My hematologist walked in and noticed that I was flustered and she immediately suggested I have patience and reminded me that this is a process and I’m not doing anything wrong. She said that crisis come unpredictably and the important thing is to think positive. I told her I was not content with my process and this was the moment that mirror was put in front of me, when she said: “You’ve come a LONGGGG way. You may not be where you want but it could be A LOT worse. When I met you, I thought in my head ‘oh my God, this little girl is going to die’. I seriously thought that. I did not tell you that, but that is what I figured based on how you were doing. And look at where you are now, nowhere near that. You’ve come a long way and can go so much further”.
WOW. I started working with her less than a year ago (about 8 months). I was in the Cardiovascular Intensive Care Unit—speeding heartbeat, one side not beating at all, lungs filling with fluid, about 900mL of fluid compressing my heart and lungs, low hemoglobin, literally unable to speak because it took too much oxygen (I was writing things down on notecards to communicate). They were running test after test that they seemed to just get worse. They wanted to sedate me and put a tube down my throat to help me breathe but I refused. They then suggested life support and told me eventually my body would tire from trying to breathe and I’d go into cardiac and pulmonary arrest. I got through this crisis after a long 3 weeks in the hospital and a few procedures later. I brushed it off as just a severe crisis. But today I realized I could have been dead. Point blank no sugar coat, I could’ve been 6 feet under but I’m alive and for the most part well. I may not be out doing everything I want but look how far I’ve gotten because of God!
I say all of that to say this: take a look at the positive side. The bright side. The silver lining. The greener grass. Perspective dictates it all. You can choose the negative route and yield negative results--- OR you can choose the positive route and recognize/acknowledge your progress. And if you can make it through once, then you can do it again and you see that eventually you’ll be where you SHOULD be. Notice I didn’t say where you WANT to be but where you SHOULD be; because what we want doesn’t always coincide with what is in God’s will and that’s what matters. So take my story to fuel yourself, encourage yourself, inspire yourself, and to see what God can do (ANYTHING). No matter the diagnoses, the prognosis, the report, the conclusion—its what He says it is. Thank God. Be blessed.
P.S. : If you’re going through anything and need someone to talk to just to get it off your chest or just someone to assure you things will be ok or encourage yourself, drop by my inbox or comment or if you have my number call or text. I want to pass on this feeling.
-Sickle Cell Soldier
Friday, February 25, 2011
So...what EXACTLY causes the pain...?
Hello readers. As usual I hope everything is going well with you and your loved ones. Today I want to answer the question of one of my readers and it will address what EXACTLY causes the pain from a sickle cell crisis (bouts of painful episodes). Ok so lets compare a non-sickler (person without sickle cell disease) to someone with the disease.
Non Sickler: In non sicklers, red blood cells are round in shape, soft in texture and obtain all of the necessary nutrients required to carry out specific functions in the body. One of the most important things that the red blood cell is responsible for is hemoglobin (an oxygen carrying protein). In non sicklers, the red blood cell has sufficient levels of hemoglobin normally ranging from 12-15. The shape and texture of these cells allow them to flow with ease through blood vessels (large or tiny) delivering oxygen and complete blood circulation throughout the body. Organs, organ systems and tissue all benefit from the adequate flowing of red blood cells, allowing the person to lead a pain-free life.
On the other hand. . .
Sicklers: In individuals with sickle cell red blood cells can become crescent (moon shaped like the letter “C”) or irregularly shaped, plus hard and sticky in texture. The important protein that carries oxygen (hemoglobin) that I mentioned earlier is inadequate in sicklers. This lack of hemoglobin starves the body of oxygen and can cause tissue/organ damage/death. This mainly causes fatigue and hinders the level of strenuous tasks able to be performed. Now on to the nuisance that is directly responsible for the pain sicklers suffer. The combination of irregular shape and hard and sticky texture makes it very difficult for the cells to flow easily throughout blood vessels (especially in joints where the vessels are curved and smaller). This causes the cells to get stuck (clot), therefore; blocking blood flow to that area of the body. The jagged edges of the cells stab at the vessel walls causing pain. The best way I can describe it is imagining jagged shards of broken glass trying to flow through small blood vessels; its like getting stabbed from the inside.
These backups can occur in any place in the body that has blood vessels. Infants and toddlers usually have more trouble with hands and feet. Younger children start to have joint pain. Teenagers usually begin suffering with their long bones (arms and legs). Adults can start to have issues with organs and organ systems. Many complications are caused from crisis due to the body being compromised. Heart attacks are common amongst sicklers, as well as collapsing lungs and strokes.
The physical pain can be annoying and debilitating. Often times sicklers may be put on temporary aids to help with movement such as walkers, wheelchairs, motor scooters, and canes. These assistance tools allow mobility to be a viable option to sicklers even in the midst of crisis.
As always, any further questions, just comment and ask and I’ll respond to you specifically or post a topic entrée on the blog. Thanks for reading
-Sickle Cell Soldier
Non Sickler: In non sicklers, red blood cells are round in shape, soft in texture and obtain all of the necessary nutrients required to carry out specific functions in the body. One of the most important things that the red blood cell is responsible for is hemoglobin (an oxygen carrying protein). In non sicklers, the red blood cell has sufficient levels of hemoglobin normally ranging from 12-15. The shape and texture of these cells allow them to flow with ease through blood vessels (large or tiny) delivering oxygen and complete blood circulation throughout the body. Organs, organ systems and tissue all benefit from the adequate flowing of red blood cells, allowing the person to lead a pain-free life.
On the other hand. . .
Sicklers: In individuals with sickle cell red blood cells can become crescent (moon shaped like the letter “C”) or irregularly shaped, plus hard and sticky in texture. The important protein that carries oxygen (hemoglobin) that I mentioned earlier is inadequate in sicklers. This lack of hemoglobin starves the body of oxygen and can cause tissue/organ damage/death. This mainly causes fatigue and hinders the level of strenuous tasks able to be performed. Now on to the nuisance that is directly responsible for the pain sicklers suffer. The combination of irregular shape and hard and sticky texture makes it very difficult for the cells to flow easily throughout blood vessels (especially in joints where the vessels are curved and smaller). This causes the cells to get stuck (clot), therefore; blocking blood flow to that area of the body. The jagged edges of the cells stab at the vessel walls causing pain. The best way I can describe it is imagining jagged shards of broken glass trying to flow through small blood vessels; its like getting stabbed from the inside.
These backups can occur in any place in the body that has blood vessels. Infants and toddlers usually have more trouble with hands and feet. Younger children start to have joint pain. Teenagers usually begin suffering with their long bones (arms and legs). Adults can start to have issues with organs and organ systems. Many complications are caused from crisis due to the body being compromised. Heart attacks are common amongst sicklers, as well as collapsing lungs and strokes.
The physical pain can be annoying and debilitating. Often times sicklers may be put on temporary aids to help with movement such as walkers, wheelchairs, motor scooters, and canes. These assistance tools allow mobility to be a viable option to sicklers even in the midst of crisis.
As always, any further questions, just comment and ask and I’ll respond to you specifically or post a topic entrée on the blog. Thanks for reading
-Sickle Cell Soldier
Monday, February 21, 2011
Such big problems...such little resources. What to do?
_____Hello readers! Once again, you decide what I provide. I asked for topics and one was to address resources for children sicklers. As well as legal “adult” sicklers who can’t provide for themselves but aren’t allowed to use their parent’s insurance. Plus adult sickler’s resources when it becomes difficult to maintain a job or parents who may lose jobs for missing work due to caring for their child with SCD. Ok so lets break them down one by one.
_____For sicklers under the age of 18: First off parents/guardians should be looking into some sort of insurance (some is better than none) but specifically a PPO over an HMO. What’s the difference you may ask? Well, an HMO is a Health Maintenance Organization which is moreso geared toward people without illnesses but need annual check ups or get the common cold, required shots etc; but, you’re restricted to the people, places, and resources that they list. On the other hand a PPO is a Preferred Provider Organization and is more suitable for people who may have to be more acquainted with doctors and hospital staff. They’ll cover up to about 80% of expenses and allow for you to choose who you want to see (some companies limit but generally its choice of the insured). Since sickle cell is a blood disease, you’ll want your child to see a hematologist (blood diseases doctor) who is considered a specialist. Sickle cell also causes a lot of other complications that call for other types of specialists (cardiologists-heart doctor, pulmonary specialists-lung doctor, etc.); PPO’s allow room for this.
_____As for camps that have staff trained in caring for sicklers, I can not speak on behalf of every state or even the state of FL but I do know of camp Boggy Creek. Camp Boggy Creek is a summer camp program that provides the pleasantries children without illnesses enjoy but with the medical staff that can handle situations such as emergencies. This camp holds sessions reserved for specific diseases and one session is for sickle cell, its held in northern FL. To find out the resources (which I must admit are scarce) just search your city or state online. Each region and usually each county has an association for sickle cell (under the SCDAA-Sickle Cell Disease Association of America, the national association), so if searched it will provide information on what is available including a calendar of events. If your county or nearest regional association isn’t active, I suggest your initiative be put into gear. Get proactive, start an association, plan events, put on fundraisers (bake cells, benefit concerts, talent shows, etc.), anything that can provide an outlet, a support system and a safety net for patients and their families. An alternative is to check with your child’s hematologist. Many of these specialists are aware of programs being held, organizations, seminars, conferences and other resources because its their specialty and field.
_____I myself have been put in that sticky situation of being between child and adult. Still child because I wasn’t able to provide for myself but seen as adult legally because I was 18. I could not afford my own expenses but was not allowed on my parents insurance…well that not exactly the case. If a cardholder calls their insurance and specifically notify them to place the 18 year old “child” on their insurance, they will be covered. Once I turned 18 I was automatically booted off of my parent’s insurance but the parent as the cardholder requested I stay under coverage. There are also resources provided by the government such as SSI (social security income) and disability. The two are very similar and provide a bit of financial support for both minors and adults suffering from illness to help cover regular and health expenses. Once in college, I also suggest the newly adult sickler to get acquainted with OSD (Office for Students with Disabilities). This sector of the school provides that link between student, doctor and professor. Once a college student, parents are no longer there to play the role of an advocate. So when those hospital visits and missing classes due to pain come around, OSD can help with this as well as provide a notetaker, and an extended number of allowed absences amongst other requests.
_____So as I imagine, most to all parents are willing to die and kill for their offspring. In the event a person’s child gets sick, a job is no longer priority—their child’s well being is. Since hospital stays are a harsh and common realty in a sicklers life, their parents spend many nights on hospital visitor cots or recliner chairs causing a lot of missed days of work. Unfortunately, I do not know of a resource for this except for being upfront. As early as the interviewing process, let your boss know that you will try not to miss work but if your child falls ill they will become priority and let them know your child has an illness. I’m not saying walk off of your job for minor pain crisis’; but, in the event of extra long stays or surgeries or complications this can become a reality.
_____Last but not least, the question of what to do when you’re an adult sickler and cant support yourself… First off, this is a hard pill to swallow and takes a toll on how a sickler may feel about their purpose because their independence is compromised. The normal 9 to 5 may not be conducive to the lifestyle of the average sickler. Sometimes a wrench is thrown into our plan and can result in being late from work, missing work, or not performing at full/maximum potential at ALL times. A lot of times (unfortunately) we may not even get hired because we’re seen as a liability. Of course a place can not use this officially as their reason for not hiring because its illegal due to the Disability Act; that says businesses can’t discriminate based on that and must provide reasonable accommodations. My recommendation: apply for jobs anyway. Life can’t stop because of the prospect of failure (failure lies within not trying). Plus I suggest being creative. Use what you know how to do to support yourself. Think of alternative sectors of your chosen profession that can be paralleled with living with these uncontrollable interruptions and bouts of sickness. For example, you may not be able to be a classroom teacher but maybe you can teach online classes. Same profession, different angle. Also, utilize resources until they are all exhausted. The combination of these things are not foolproof but being positive and prayer both have power. Remember that and good luck! Signing off
-Sickle Cell Soldier
_____For sicklers under the age of 18: First off parents/guardians should be looking into some sort of insurance (some is better than none) but specifically a PPO over an HMO. What’s the difference you may ask? Well, an HMO is a Health Maintenance Organization which is moreso geared toward people without illnesses but need annual check ups or get the common cold, required shots etc; but, you’re restricted to the people, places, and resources that they list. On the other hand a PPO is a Preferred Provider Organization and is more suitable for people who may have to be more acquainted with doctors and hospital staff. They’ll cover up to about 80% of expenses and allow for you to choose who you want to see (some companies limit but generally its choice of the insured). Since sickle cell is a blood disease, you’ll want your child to see a hematologist (blood diseases doctor) who is considered a specialist. Sickle cell also causes a lot of other complications that call for other types of specialists (cardiologists-heart doctor, pulmonary specialists-lung doctor, etc.); PPO’s allow room for this.
_____As for camps that have staff trained in caring for sicklers, I can not speak on behalf of every state or even the state of FL but I do know of camp Boggy Creek. Camp Boggy Creek is a summer camp program that provides the pleasantries children without illnesses enjoy but with the medical staff that can handle situations such as emergencies. This camp holds sessions reserved for specific diseases and one session is for sickle cell, its held in northern FL. To find out the resources (which I must admit are scarce) just search your city or state online. Each region and usually each county has an association for sickle cell (under the SCDAA-Sickle Cell Disease Association of America, the national association), so if searched it will provide information on what is available including a calendar of events. If your county or nearest regional association isn’t active, I suggest your initiative be put into gear. Get proactive, start an association, plan events, put on fundraisers (bake cells, benefit concerts, talent shows, etc.), anything that can provide an outlet, a support system and a safety net for patients and their families. An alternative is to check with your child’s hematologist. Many of these specialists are aware of programs being held, organizations, seminars, conferences and other resources because its their specialty and field.
_____I myself have been put in that sticky situation of being between child and adult. Still child because I wasn’t able to provide for myself but seen as adult legally because I was 18. I could not afford my own expenses but was not allowed on my parents insurance…well that not exactly the case. If a cardholder calls their insurance and specifically notify them to place the 18 year old “child” on their insurance, they will be covered. Once I turned 18 I was automatically booted off of my parent’s insurance but the parent as the cardholder requested I stay under coverage. There are also resources provided by the government such as SSI (social security income) and disability. The two are very similar and provide a bit of financial support for both minors and adults suffering from illness to help cover regular and health expenses. Once in college, I also suggest the newly adult sickler to get acquainted with OSD (Office for Students with Disabilities). This sector of the school provides that link between student, doctor and professor. Once a college student, parents are no longer there to play the role of an advocate. So when those hospital visits and missing classes due to pain come around, OSD can help with this as well as provide a notetaker, and an extended number of allowed absences amongst other requests.
_____So as I imagine, most to all parents are willing to die and kill for their offspring. In the event a person’s child gets sick, a job is no longer priority—their child’s well being is. Since hospital stays are a harsh and common realty in a sicklers life, their parents spend many nights on hospital visitor cots or recliner chairs causing a lot of missed days of work. Unfortunately, I do not know of a resource for this except for being upfront. As early as the interviewing process, let your boss know that you will try not to miss work but if your child falls ill they will become priority and let them know your child has an illness. I’m not saying walk off of your job for minor pain crisis’; but, in the event of extra long stays or surgeries or complications this can become a reality.
_____Last but not least, the question of what to do when you’re an adult sickler and cant support yourself… First off, this is a hard pill to swallow and takes a toll on how a sickler may feel about their purpose because their independence is compromised. The normal 9 to 5 may not be conducive to the lifestyle of the average sickler. Sometimes a wrench is thrown into our plan and can result in being late from work, missing work, or not performing at full/maximum potential at ALL times. A lot of times (unfortunately) we may not even get hired because we’re seen as a liability. Of course a place can not use this officially as their reason for not hiring because its illegal due to the Disability Act; that says businesses can’t discriminate based on that and must provide reasonable accommodations. My recommendation: apply for jobs anyway. Life can’t stop because of the prospect of failure (failure lies within not trying). Plus I suggest being creative. Use what you know how to do to support yourself. Think of alternative sectors of your chosen profession that can be paralleled with living with these uncontrollable interruptions and bouts of sickness. For example, you may not be able to be a classroom teacher but maybe you can teach online classes. Same profession, different angle. Also, utilize resources until they are all exhausted. The combination of these things are not foolproof but being positive and prayer both have power. Remember that and good luck! Signing off
-Sickle Cell Soldier
Thursday, February 10, 2011
A snippet of how SCD has affected me
Jasmine Bailey
Age 21
Sometimes the physical pain is the easiest part to deal with; but, that by no stretch of the imagination means that it is easy. There are just so many other aspects of life besides the physical that are affected by having sickle cell disease. I recall the disease specifically taking a toll on my mental/emotional state all of my life; but, especially during college. Imagine all of your friends, classmates and roommates going to class during the day, pulling all-nighters, partying in clubs until exhaustion, and doing it all over again with no problem. I wanted to be “normal” so badly but I always had to choose between activities because doing more than one would send me into a pain crisis. Due to this I always felt left out and inadequate compared to my peers which ultimately wreaked havoc on my social life.
The part that hurt me the most was the fact that sickle cell affected my academic life. I’ve always loved school and learning so making good grades was never a problem. However, when I started to receive C’s and sometimes even failing grades because of missing classes or something other than intellectual ability, I felt cheated. It seems as though I have to work ten times as hard just to make average grades when it comes so easy to my peers; not to mention the fact that one crisis/hospital visit can undo weeks of studying and drop an A to a D in an uncontrollable instant.
I’m embarrassed to say but sometimes I allowed this disease to affect my spiritual life. During crisis when I’d be writhing in pain, suffering, struggling to breathe, and weak beyond reason; I’d ask “Why God, why me?”. I at times just couldn’t understand how a greater being would allow this suffering to occur; but, with growth and maturity I’ve taken that negative in thinking this was my curse and turned it to a positive and as a blessing. Due to my struggles with this disease I’ve learned to persevere, to be resilient and write my emotions out through the art form of poetry that has served as encouragements to others as well as myself.
Like I said earlier, sometimes the physical pain is the easiest part to deal with. I say that because its expected, its inevitable so we know it is coming and we know what it feels like. I am familiar with my bones feeling like jagged shards of glass are trying to flow through my veins. I am acquainted with the feeling of tightness present when my lungs are filling with fluid or on the verge of collapsing. I know what its like to be stuck with needles 30 plus times to find an IV site amongst scarred veins. I’m use to gasping for air and have nothing happen but a mere struggle, or to feel so fatigued that speaking becomes a feat. I’ve had my legs and ankles swell rendering me immobile for 7 months while I used a wheelchair, walker and cane. Not to mention experiencing the torment of side effects of being on 14 different medications—side effects ranging from nausea to constipation, diarrhea to hair loss, weight gain to confusion, dry mouth to swelling.
While all of those things seem almost intolerable, they wan in comparison to the stigmas that we as sicklers face. I have lost friends who just couldn’t handle the overwhelming nature of this disease. Family members have treaded the land of frustration because they want me to get better—it makes me feel like a burden though I know they just want the best. I’ve had judgmental eyes follow me through hallways while I wheel myself as strangers recall I was just walking the other day. I’ve lived the embarrassment of walking with a walker in public and have people stare in curiosity and are cordial because they feel sorry for me. Then there is the biggest brunt to bear—the myth of sicklers being drug seeking. As if it weren’t enough to deal with the pain and fighting our own body, we have to fight nurses, PCA’s, and doctors/hematologists who may think we’re exaggerating our pain or even lying about it altogether. No doubt there exist drug seekers in the sickle cell community but I’m sure that’s the case with every disease. However, it seems to be the standard generalization or label when medical personnel encounter people with sickle cell. This is an unfair judgment and we should be treated as individuals instead of by unwarranted conclusions drawn up by a person who hasn’t walked a step in our shoes.
Overall we hope for empathy not sympathy, for people to be educated, for people to get tested to minimize the people born with the disease. In addition and most importantly we’d like equal attention for our disease that is often undermined, underpublicized (if at all), and overlooked. Ultimately with the collaborative effort of all of those elements we can lower the mortality rate, increase the QOL (quality of life), get research that’ll lead to a cure—or in the case a cure is not found we can offer a range of support for each sector of life; thus giving sicklers the equal opportunity to be functional and contributing members of society like everyone else.
Age 21
Sometimes the physical pain is the easiest part to deal with; but, that by no stretch of the imagination means that it is easy. There are just so many other aspects of life besides the physical that are affected by having sickle cell disease. I recall the disease specifically taking a toll on my mental/emotional state all of my life; but, especially during college. Imagine all of your friends, classmates and roommates going to class during the day, pulling all-nighters, partying in clubs until exhaustion, and doing it all over again with no problem. I wanted to be “normal” so badly but I always had to choose between activities because doing more than one would send me into a pain crisis. Due to this I always felt left out and inadequate compared to my peers which ultimately wreaked havoc on my social life.
The part that hurt me the most was the fact that sickle cell affected my academic life. I’ve always loved school and learning so making good grades was never a problem. However, when I started to receive C’s and sometimes even failing grades because of missing classes or something other than intellectual ability, I felt cheated. It seems as though I have to work ten times as hard just to make average grades when it comes so easy to my peers; not to mention the fact that one crisis/hospital visit can undo weeks of studying and drop an A to a D in an uncontrollable instant.
I’m embarrassed to say but sometimes I allowed this disease to affect my spiritual life. During crisis when I’d be writhing in pain, suffering, struggling to breathe, and weak beyond reason; I’d ask “Why God, why me?”. I at times just couldn’t understand how a greater being would allow this suffering to occur; but, with growth and maturity I’ve taken that negative in thinking this was my curse and turned it to a positive and as a blessing. Due to my struggles with this disease I’ve learned to persevere, to be resilient and write my emotions out through the art form of poetry that has served as encouragements to others as well as myself.
Like I said earlier, sometimes the physical pain is the easiest part to deal with. I say that because its expected, its inevitable so we know it is coming and we know what it feels like. I am familiar with my bones feeling like jagged shards of glass are trying to flow through my veins. I am acquainted with the feeling of tightness present when my lungs are filling with fluid or on the verge of collapsing. I know what its like to be stuck with needles 30 plus times to find an IV site amongst scarred veins. I’m use to gasping for air and have nothing happen but a mere struggle, or to feel so fatigued that speaking becomes a feat. I’ve had my legs and ankles swell rendering me immobile for 7 months while I used a wheelchair, walker and cane. Not to mention experiencing the torment of side effects of being on 14 different medications—side effects ranging from nausea to constipation, diarrhea to hair loss, weight gain to confusion, dry mouth to swelling.
While all of those things seem almost intolerable, they wan in comparison to the stigmas that we as sicklers face. I have lost friends who just couldn’t handle the overwhelming nature of this disease. Family members have treaded the land of frustration because they want me to get better—it makes me feel like a burden though I know they just want the best. I’ve had judgmental eyes follow me through hallways while I wheel myself as strangers recall I was just walking the other day. I’ve lived the embarrassment of walking with a walker in public and have people stare in curiosity and are cordial because they feel sorry for me. Then there is the biggest brunt to bear—the myth of sicklers being drug seeking. As if it weren’t enough to deal with the pain and fighting our own body, we have to fight nurses, PCA’s, and doctors/hematologists who may think we’re exaggerating our pain or even lying about it altogether. No doubt there exist drug seekers in the sickle cell community but I’m sure that’s the case with every disease. However, it seems to be the standard generalization or label when medical personnel encounter people with sickle cell. This is an unfair judgment and we should be treated as individuals instead of by unwarranted conclusions drawn up by a person who hasn’t walked a step in our shoes.
Overall we hope for empathy not sympathy, for people to be educated, for people to get tested to minimize the people born with the disease. In addition and most importantly we’d like equal attention for our disease that is often undermined, underpublicized (if at all), and overlooked. Ultimately with the collaborative effort of all of those elements we can lower the mortality rate, increase the QOL (quality of life), get research that’ll lead to a cure—or in the case a cure is not found we can offer a range of support for each sector of life; thus giving sicklers the equal opportunity to be functional and contributing members of society like everyone else.
Wednesday, February 2, 2011
Airplanes and Sickle Cell: Know the Precautions
**So here is an academic essay written for a science class of mine. It really explains the necessary precautions for flying on planes with sickle cell and why. Excuse all of the scientific jargon and fancy talk-- remember it was an essay for a class lol**Don't forget to comment b/c READERS DECIDE WHAT I PROVIDE!!! :)
Sickles in the Sky:
High Altitude & Air Pressures Negative Effect on Sickle Cell Disease
_____Picture this: blue skies, clear day, Fort Lauderdale airport, my third time flying on an airplane. I am very much use to the ups and downs, ins and outs, and pros and cons of flying on a commercial airplane. The flight that I always traveled was a relatively short one in nature-ranging from Fort Lauderdale, Florida to Bridgeport, Connecticut which only stretched out into a two and half to three hour flight. I went through the same ritual I always did when flying which included but was not limited to praying for safe travel, buying a pack of gum to counteract the inevitable ear popping, dress in comfortable clothes, come equipped with easy listening music and/or a book to keep me busy, and take a Benadryl to hopefully fall asleep when all else forms of entertainment fail. Despite weather conditions highly conducive to safe flying and me following my pre-flight rituals, this time was starting different and would definitely end differently. I boarded the plane with the same confidence I always did, took my seat, popped some Benadryl and Bubblicious bubble gum with my seat-belt securing me. I waited for the flight attendants to go over safety precautions and in-case of emergency protocol before plugging my ears with the raspy voice of Lauryn Hill on my iPod. Prior to ever flying I had always read that people with certain diseases or ailments should take special precautions, and I happened to fall into the category of people with “certain diseases”. On the internet, any site that included Sickle Cell Disease (SCD) said that SCD sufferers should travel after getting full physical and health clearance from a general doctor/hematologist and when in the process of flying should be equipped with oxygen on the plane. The two previous times I had been on Delta (or any airline) flights I had never flown with oxygen, nor got the “ok” from my pediatric hematologist. To my advantage I never became ill during or after the flight; the most I had to deal with was stopped up ears from high altitudes. Considering the previously mentioned, I felt invincible despite high altitudes/low pressure decreasing oxygen and thus negatively affecting Sickle Cell Disease. Boy was I in for a sickle surprise…
_____ When the engines roared, and the plane seemingly increased to a runway speed of an infinite amount of miles per hour my ears started to pop and get stuffy. I bit down on the bulk of the gum as hard as I could to balance the ear popping…needless to say, it did not work. Besides my ears giving me major trouble, I swear my brain was getting in on the action and partaking in some popping of its own and this was all before the plane even took off. I tried breathing deeply, participating in imagery exercises and muscle tensing/release to relieve some of this pain. I took a Tylenol 4 with codeine pill so that the active ingredients could start working immediately but within the next half hour the pain grew exponentially. My arms and legs started to hurt, I had a mind blowing migraine, and my breathing became freakishly shallow-all I could do is lay my head in my Aunt’s lap and hope for the plane ride to be over. Due to the mix of Benadryl and Tylenol 4 with codeine I fell into an uncomfortable sleep and woke up in the airport in Connecticut. By the time we reached my whole body was in unbearable pain and I started to vomit like I was possessed with the spawn of Satan. I had no clue why this was happening, but we will get into that next.
_____ To realize what the cause of the previous situation was, the disease Sickle Cell must be understood in entirety. I am definitely not a fan of “dumb-ing it down”, however, on the other end of the spectrum, I’m not a firm believer of “the bore”. With that said, I will search for some middle ground in between the two lands to accurately describe that which is Sickle Cell Disease. SCD is a hereditary blood disease which simply means it can not be passed from one person to the next by casual contact or sexual intercourse but through genetics (from parents). People not affected with the chronic illness have round, soft (jelly donut textured) red blood cells that carry out the expected duties of a red blood cell including spreading hemoglobin. Hemoglobin is just a fancy term for a protein in our bodies that carry oxygen, so in a non-sickler, cells pass through blood vessels with ease and provide organs, tissues, and organ systems with an ample amount of oxygen. On the other end, sicklers- as we are affectionately called have a deficiency in hemoglobin. Due to having a dysfunctional oxygen carrying protein, red blood cells become distorted in shape (sickle moon/crescent shaped), hard and sticky and texture and therefore gets stuck and clotted in vessels, cutting off oxygen supply to the body, causing chronic pain, tissue/organ damage/death and ultimately death in general. Sicklers are equipped with about one half of the oxygen normal people have meaning it takes twice as much oxygen energy to do the same simple tasks such as walking to class or tying one’s shoe. When a flare up of pain occurs, this is referred to as a sickle cell crisis. Logically, people affected with SCD know their bodies, so they know to stay hydrated at all times, eat healthily, stay away from strenuous activity, extreme weather changes, and anything that may be a crisis trigger.
_____ For the second part of this deadly combination we will elaborate in the form of cause and effect: the higher the altitude, the lower the air pressure; the lower the air pressure, the number of molecules per breath is reduced even though the concentration of oxygen is the same as at sea level which is about twenty-one percent. The average commercial plane flies at thirty thousand feet which converts into approximately 9144 meters. Logically speaking, if an individual with sickle cell has half of the oxygen a non-sickler has at ground level and oxygen decreases with the increase of altitudes, then at higher altitudes a sickler will be at deadly percentages of oxygen. Due to the previously mentioned fact, this is the reason it is strongly suggested by doctors, hematologists, and airplane lines that people with sickle cell make arrangements prior to boarding the plane to have a drop down oxygen bag available for the flight in entirety. With this extra aid in the form of an oxygen bag (usually reserved for emergency purposes, i.e. crashes, impromptu evacuation), the available oxygen will provide leverage to the body systems so that it counteracts the decrease of oxygen in the natural air at this low pressured high altitude. Of course with any health suggestions there are skeptical people who may question the validity of the facts or want to measure the precision point at when oxygen should be provided. For skeptics or people who just want to know their information is backed up by scientific means there is a way to measure decreasing amounts of oxygen. This method basically measures the decreasing amounts of oxygen at air in a low pressure (thus high altitude) atmosphere measuring from the point at sea level. For example an “oxygen altitude graph” would depict amounts of ambient oxygen and barometric pressure in relation to the top of Mt. Everest (high altitude). Mount Everest is just under thirty thousand feet, around 8848 meters which is about the height discussed earlier that commercial planes fly. Therefore, the graph would be a great depiction of the state of surrounding atmospheric oxygen and air pressure (as measured by a barometer) at the height we all fly. We would be able to see that there would be a direct correlation. As altitude increases so does “barometric (air) pressure”, and overall oxygen levels decrease.
_____ Now that we have all of the information needed to understand the basics of Sickle Cell Disease and how oxygen levels are affected by increasing altitudes we can do a bit of deductive reasoning. With that said, let’s get back to the story that fueled the topic for this paper. To recap, let’s look at quick facts: hemoglobin is an oxygen carrying protein, SCD is a hemoglobin deficient disease; therefore, SCD patients lack oxygen. In addition: anything above sea level can be considered a “higher altitude”, airplanes (such as Delta airways) travel at 9114 meters which is well above sea level, the higher the altitude the lower the air pressure, the lower the air pressure the less oxygen there is. So combining the two one would say: due to sicklers lacking oxygen, traveling at high altitudes decreases the amount of oxygen available; thus, other oxygen sources need to be used. When the previously mentioned situation was a reality to me, I was ignorant to the facts of oxygen even being affected by higher altitudes. In the mindset of a ten or eleven year old kid, I can truly say I thought that oxygen if anything would be increased because there was nothing but space in the air. Little did I know, that little piece of missing information could have nearly cost me my life. A normal person’s hemoglobin ranges from 12-15, my hemoglobin at a healthy level can get up to a 9 if I’m lucky; however, due to the preparation for travel I figure my hemoglobin to have dropped to around a 7. Upon boarding the plane of course I felt fine because my body is now tolerant to lower levels of the oxygen carrying protein. When we started to ascend for travel and my body was not getting extra oxygen, I’m pretty sure it went into reaction mode and dropped my hemoglobin. If I could picture the internal war my body was going through I can describe it as gruesome. Cells trying to get oxygen and failing, becoming shriveled up and crescent shaped, clustering together in blood vessels with jagged edges protruding and causing pain. My breathing became shallow, my heart rate increased and alternated between palpitations and my limbs suffered excruciating pain. Needless to say, I had to make a trip to the hospital as a first part to my vacation but I’m glad because I’ve now learned my lesson!
**Intellectual Property of Jasmine Bailey**
Sickles in the Sky:
High Altitude & Air Pressures Negative Effect on Sickle Cell Disease
_____Picture this: blue skies, clear day, Fort Lauderdale airport, my third time flying on an airplane. I am very much use to the ups and downs, ins and outs, and pros and cons of flying on a commercial airplane. The flight that I always traveled was a relatively short one in nature-ranging from Fort Lauderdale, Florida to Bridgeport, Connecticut which only stretched out into a two and half to three hour flight. I went through the same ritual I always did when flying which included but was not limited to praying for safe travel, buying a pack of gum to counteract the inevitable ear popping, dress in comfortable clothes, come equipped with easy listening music and/or a book to keep me busy, and take a Benadryl to hopefully fall asleep when all else forms of entertainment fail. Despite weather conditions highly conducive to safe flying and me following my pre-flight rituals, this time was starting different and would definitely end differently. I boarded the plane with the same confidence I always did, took my seat, popped some Benadryl and Bubblicious bubble gum with my seat-belt securing me. I waited for the flight attendants to go over safety precautions and in-case of emergency protocol before plugging my ears with the raspy voice of Lauryn Hill on my iPod. Prior to ever flying I had always read that people with certain diseases or ailments should take special precautions, and I happened to fall into the category of people with “certain diseases”. On the internet, any site that included Sickle Cell Disease (SCD) said that SCD sufferers should travel after getting full physical and health clearance from a general doctor/hematologist and when in the process of flying should be equipped with oxygen on the plane. The two previous times I had been on Delta (or any airline) flights I had never flown with oxygen, nor got the “ok” from my pediatric hematologist. To my advantage I never became ill during or after the flight; the most I had to deal with was stopped up ears from high altitudes. Considering the previously mentioned, I felt invincible despite high altitudes/low pressure decreasing oxygen and thus negatively affecting Sickle Cell Disease. Boy was I in for a sickle surprise…
_____ When the engines roared, and the plane seemingly increased to a runway speed of an infinite amount of miles per hour my ears started to pop and get stuffy. I bit down on the bulk of the gum as hard as I could to balance the ear popping…needless to say, it did not work. Besides my ears giving me major trouble, I swear my brain was getting in on the action and partaking in some popping of its own and this was all before the plane even took off. I tried breathing deeply, participating in imagery exercises and muscle tensing/release to relieve some of this pain. I took a Tylenol 4 with codeine pill so that the active ingredients could start working immediately but within the next half hour the pain grew exponentially. My arms and legs started to hurt, I had a mind blowing migraine, and my breathing became freakishly shallow-all I could do is lay my head in my Aunt’s lap and hope for the plane ride to be over. Due to the mix of Benadryl and Tylenol 4 with codeine I fell into an uncomfortable sleep and woke up in the airport in Connecticut. By the time we reached my whole body was in unbearable pain and I started to vomit like I was possessed with the spawn of Satan. I had no clue why this was happening, but we will get into that next.
_____ To realize what the cause of the previous situation was, the disease Sickle Cell must be understood in entirety. I am definitely not a fan of “dumb-ing it down”, however, on the other end of the spectrum, I’m not a firm believer of “the bore”. With that said, I will search for some middle ground in between the two lands to accurately describe that which is Sickle Cell Disease. SCD is a hereditary blood disease which simply means it can not be passed from one person to the next by casual contact or sexual intercourse but through genetics (from parents). People not affected with the chronic illness have round, soft (jelly donut textured) red blood cells that carry out the expected duties of a red blood cell including spreading hemoglobin. Hemoglobin is just a fancy term for a protein in our bodies that carry oxygen, so in a non-sickler, cells pass through blood vessels with ease and provide organs, tissues, and organ systems with an ample amount of oxygen. On the other end, sicklers- as we are affectionately called have a deficiency in hemoglobin. Due to having a dysfunctional oxygen carrying protein, red blood cells become distorted in shape (sickle moon/crescent shaped), hard and sticky and texture and therefore gets stuck and clotted in vessels, cutting off oxygen supply to the body, causing chronic pain, tissue/organ damage/death and ultimately death in general. Sicklers are equipped with about one half of the oxygen normal people have meaning it takes twice as much oxygen energy to do the same simple tasks such as walking to class or tying one’s shoe. When a flare up of pain occurs, this is referred to as a sickle cell crisis. Logically, people affected with SCD know their bodies, so they know to stay hydrated at all times, eat healthily, stay away from strenuous activity, extreme weather changes, and anything that may be a crisis trigger.
_____ For the second part of this deadly combination we will elaborate in the form of cause and effect: the higher the altitude, the lower the air pressure; the lower the air pressure, the number of molecules per breath is reduced even though the concentration of oxygen is the same as at sea level which is about twenty-one percent. The average commercial plane flies at thirty thousand feet which converts into approximately 9144 meters. Logically speaking, if an individual with sickle cell has half of the oxygen a non-sickler has at ground level and oxygen decreases with the increase of altitudes, then at higher altitudes a sickler will be at deadly percentages of oxygen. Due to the previously mentioned fact, this is the reason it is strongly suggested by doctors, hematologists, and airplane lines that people with sickle cell make arrangements prior to boarding the plane to have a drop down oxygen bag available for the flight in entirety. With this extra aid in the form of an oxygen bag (usually reserved for emergency purposes, i.e. crashes, impromptu evacuation), the available oxygen will provide leverage to the body systems so that it counteracts the decrease of oxygen in the natural air at this low pressured high altitude. Of course with any health suggestions there are skeptical people who may question the validity of the facts or want to measure the precision point at when oxygen should be provided. For skeptics or people who just want to know their information is backed up by scientific means there is a way to measure decreasing amounts of oxygen. This method basically measures the decreasing amounts of oxygen at air in a low pressure (thus high altitude) atmosphere measuring from the point at sea level. For example an “oxygen altitude graph” would depict amounts of ambient oxygen and barometric pressure in relation to the top of Mt. Everest (high altitude). Mount Everest is just under thirty thousand feet, around 8848 meters which is about the height discussed earlier that commercial planes fly. Therefore, the graph would be a great depiction of the state of surrounding atmospheric oxygen and air pressure (as measured by a barometer) at the height we all fly. We would be able to see that there would be a direct correlation. As altitude increases so does “barometric (air) pressure”, and overall oxygen levels decrease.
_____ Now that we have all of the information needed to understand the basics of Sickle Cell Disease and how oxygen levels are affected by increasing altitudes we can do a bit of deductive reasoning. With that said, let’s get back to the story that fueled the topic for this paper. To recap, let’s look at quick facts: hemoglobin is an oxygen carrying protein, SCD is a hemoglobin deficient disease; therefore, SCD patients lack oxygen. In addition: anything above sea level can be considered a “higher altitude”, airplanes (such as Delta airways) travel at 9114 meters which is well above sea level, the higher the altitude the lower the air pressure, the lower the air pressure the less oxygen there is. So combining the two one would say: due to sicklers lacking oxygen, traveling at high altitudes decreases the amount of oxygen available; thus, other oxygen sources need to be used. When the previously mentioned situation was a reality to me, I was ignorant to the facts of oxygen even being affected by higher altitudes. In the mindset of a ten or eleven year old kid, I can truly say I thought that oxygen if anything would be increased because there was nothing but space in the air. Little did I know, that little piece of missing information could have nearly cost me my life. A normal person’s hemoglobin ranges from 12-15, my hemoglobin at a healthy level can get up to a 9 if I’m lucky; however, due to the preparation for travel I figure my hemoglobin to have dropped to around a 7. Upon boarding the plane of course I felt fine because my body is now tolerant to lower levels of the oxygen carrying protein. When we started to ascend for travel and my body was not getting extra oxygen, I’m pretty sure it went into reaction mode and dropped my hemoglobin. If I could picture the internal war my body was going through I can describe it as gruesome. Cells trying to get oxygen and failing, becoming shriveled up and crescent shaped, clustering together in blood vessels with jagged edges protruding and causing pain. My breathing became shallow, my heart rate increased and alternated between palpitations and my limbs suffered excruciating pain. Needless to say, I had to make a trip to the hospital as a first part to my vacation but I’m glad because I’ve now learned my lesson!
**Intellectual Property of Jasmine Bailey**
Thursday, January 13, 2011
The Sting of the Stigma
Hello to all of my readers. I'm coming to you in a serious mood. This topic is one that is well-known about but very much so taboo. Its the stigma of sicklers (person with sickle cell disease-as we are self dubbed and affectionately referred to)being DRUG SEEKING. Those words are exactly what they imply but just to define to void any misunderstanding i will provide a definition in this specific context: Drug Seeking-a person who goes to hospitals either lying about symptoms or exaggerating symptoms of pain/discomfort in order to receive narcotic drugs (i.e. pain pills, IV medication). Due to the fact that sicklers are constantly in and out of the hospital and usually on some sort of narcotic pain medication, the stigma of us being drug seeking was formed. Personally, I've taken narcotic medication for pain since infant/toddler days. In this common case (not just with sicklers, just general science) a tolerance is built up which just means stronger or higher doses of medication are needed to control pain symptoms and provide pain relief. Keeping all of this in mind, it is often seen that nurses, nurse practitioners, physician's assistants, doctors, hematologists, etc. adapt this way of thinking. Sometimes they will verbally express their belief that a patient is drug seeking, other times they may hint at it through snide comments/remarks, then there is the general attitude that conveys this message. Just because medical personnel doesn't overtly say, "I think you're drug seeking" does not mean they don't believe that. Besides, 75% of all communication is non-verbal. Not only are these accusations rude but hurtful and can result in some sicklers fatality inadvertently. I mean picture this scenario: you've been in pain for a week straight, biting the bullet going through daily routines, trying to take medication to relieve the symptoms; however, it does not always help and mostly cause unfavorable results (upset stomach, diarrhea, fatigue, nausea, headache, etc.). Finally you say you cant take it anymore and go to ER because there are no sickle cell day clinics for treatment. While there you spend up to 2 and a half hours between being in the emergency room and triage protocol. Then you get admitted and the person responsible for your healthcare throws out comments like "you must be here for the drugs" or maybe they are reluctant to even treat you-leaving you no where to turn. I remember at my personal hospital we were fortunate enough to have a sickle cell day clinic where patients were able to go to receive fluids, blood, pain medication from 9am to 4pm to prevent or treat a crisis. If you felt better you went home, if not you got admitted. Over 200 sicklers utilized this resource; however, there were only 4 rooms making that a total of 8 beds-- not much of a resource huh? But nevertheless it was ALL WE HAD....until even that closed, forcing sicklers experiencing crisis to go to the emergency room. Then when you get there you're falsely accused or judged for something as harsh as being drug seeking. Yes I do understand that there are drug seeking sicklers as there are in every disease pool; however, this gives no one no right to judge every sickler in that manner. Its categorizing, stigmatizing, discriminating, judging and unwarranted--not to mention worse of all its hurtful and can yield very dangerous results. For example, imagine this has been a trend in some sicklers life and they are tired of this experience of being in pain and not being believed, being looked down on, talked to in a condescending manner, treated as if they were inferior. Next time a bout of pain comes on they are apprehensive to seek treatment in order to avoid this. Two outcomes are available. One: the sickler dies without ever getting treated. (or). Two: the sickler finally gets treatment but its too late and they die at the hospital or the damage done from waiting is irreversible and the complications they have to deal with are now lifelong in addition to the disease. This is one of the reasons I started the blog, to dispel myths and rumors and stigmas such as this one. To expose what is happening unjustly in the sickle cell community and to evoke empathy in those without the disease. We don't want you to feel sorry for us, no we don't want your sympathy; we want you to understand, put yourself in our shoes/position. Sickle cell soldier signing off. Please comment.
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