In Vitro

In Vitro Fertilization

(IVF)

Today was an interesting day. I just got discharged from the hospital yesterday from a 3wk hospitalization. The only reason I was discharged was because I asked the doctors to let me go home for Christmas. While I was in the hospital my Fertility doctor stopped by and talked to me about what I'll need to get prepared for in the next couple of weeks. The reason I need IVF is because of the amount of chemotherapy and radiation I'll be getting. I was told the chemotherapy and radiation will make me unable to have children. Anyway, according to Dr. Gutman I was supposed to get started on some medications for my fertility but the doctors overseeing my sickle cell dropped the ball. So I spoke to my fertility doctor (Dr. Gutman-Thomas Jefferson University Hospital) and she said that she spoke to my bone marrow doctor (Dr. Filicko-Thomas Jefferson University Hospital) whom said the transplant will take place in six weeks. It was supposed to be December 10th but last minute insurance problems came up delaying things for me.

Since my transplant is in six weeks Dr. Gutman says I need to begin my medication regimine tomorrow and next week meet the nurses that will be working with me whom will also walk through the process of my giving myself injections and the whole nine yards. It's funny because the prospect of doing IVF was exciting to me at first because I at least will still get to have a child and I get control over who the father will be therefore solidifying the fact that my child will definately not have Sickle Cell Anemia. I say that because of the following chart:

You know, as I hung up the phone with Dr. Gutman I suddenly got very emotional and felt very scared and alone for some reason. I know I'm not alone because I have the most Supportive Mother but there's something about this process and it's finalizations that have stirred up untouched emotions. Well, this is finally and actually happening and I just hope I make it through all of this ok. The question and thoughts that keep running my mind is: Who will I be after all of this, Will I survive this, Will I die from this, Will I get cured, Will all of this be for naught, will, will, will. I have to stop and make a conscious decision to instead think: God Your Will, Your Will, Your Will.

What does it mean to be Weak?

Wow, where have I been?

I've been sick of course. People ask me all the time how I am. It's so funny because it never fails that I'm sick. I feel like I never get a break to at least get myself together and regroup so that I can take on the enormity that comes with suffering with this disease.

I don't want to be that person that always bring people down by what I'm going through. I want to be able to have a normal conversation about the current movies that are out and how horrible or great it was but alas no. I have nothing to share that is different or able to contribute. When was the last time that I was even around a group of people that weren't hospital staff??? Hmmmm...

It really is tempting to want to get sad and down about my life and the apparent hold that I'm in but I refuse to be taken down by this disease. Instead, I've taken my cues from God and decided to stand up under my adversities. It is not an easy task at all but I stop my self after a needed cry and think of Jesus and how much he suffered because of his love for people, me and his father. I push each and every day not because I'm strong, no not at all, but instead because there is a reason for all of this whether or not i know the exact reason I know that God believes in me enough to put all this on my plate. So who am I to disappoint my Father who loves me so unconditionally? The only reason I get through this is because I feel His love and support without that I'd be broken.

But I also had to come to the realization that my suffering, my pain, constant prodding, poking, drugs are allot and because it is all so much it has to incite a series of emotions that are to not be ignored. I used to think that if I cried and felt sad about what I was going through that it meant that I was weak and a sad person who just felt sorry for herself. The truth is if you don't allow yourself to feel those emotions then you can't truly grow as a person and you won't be able to continue to take on the challenges of the disease! You become Stuck.

Allowing yourself to feel sad, allowing yourself to feel frustrated is the key to really taking on the disease. Without going through the process I remember feeling stuck and overwhelmed. Now the key is not giving into those emotions or allowing them to consume you. It's not an exact science and I do fail sometimes and my emotions do get the best of me sometimes but that's when I realized that my faith, my God calls me to give over to him all of my worries and burdens and that he'll take care of me. It's not my responsibility to take on everything and to be superwoman, be strong all the time. It's unrealistic. The strength comes in knowing your weaknesses and knowing that trying to smile and be happy all the time when I'm going through so much is an act and will only lead to more sadness.

I appreciate now how hard it is dealing with this disease and I respect the things that all this suffering is teaching me. It is extremely hard dealing with this disease but I do rejoice in the fact that I'm still here.

C o c k t a i l ~ M e d i c a t i o n s

As you can imagine I take allot of medication to alleviate pain and maintain my health. To really understand how much drugs I take look at the pictures I've provided. These meds have there individual function while as a whole provide treatment for me and trying to control my disease.

It's allot taking down all these pills. Many times I feel as though I'm eating a meal when I take these pills. I take all but 5 of the pills in the above pic twice a day. This specific combo is my night time cocktail. Here is a list of the medications I take on a daily basis:

Hydroxyurea 1500mg (cancer medication used with sickle cell patients)--once a day,

Folic Acid 1mg--once a day,

Opana ER 300mg--2x a day equals 600mg a day for pain,

Opana IR 60-80mg--every 3hrs as needed for pain,

Lyrica 75mg--3x a day for nerve pain,

Ibuprofen 600-800mg--every 4-6hrs as needed for pain/inflammation,

Trazadone 100mg--once a day sleeping pill,

Hydromorphone 8mg tabs (8 pills)--every 4hrs as needed for pain,

Prochlorperazine 5mg--as needed for nausea,

Cyclobenzapr 10mg--3x a day for muscle pain,

Nicosan 350mg--once a day for sickle cell maintenance,

Morphine 400mg*--3x a day for pain

* I no longer take Morphine it has been replaced by Opana

Today was a ShoCkeR!

I woke up this morning Encouraged but I'm sitting here discouraged. Waking up this morning I had an idea of how this day was going to be.

Today was my appointment with Dr. Filicko (my bone marrow Dr.). The goal of the appointment was to finally set a date to begin the transplant, sign some papers, draw some bloods, and leave with a direction, a plan for my health. Instead, as I sit there in the doctors office with my mother waiting as I think with glee on how soon my life will change. Dr. Filicko enters and encourages me that ALL the tests I've had to do for the transplant have been surprisingly Great! She then shares with me that the goal was to get me started on December 10th and be done just days before Christmas. Wow, I'm so excited till I stop and realize she used the word WAS in her statement.

There's a problem she says. Your insurance which we thought would cover your transplant is not covered. She goes into an in depth explanation about what the problem is and why I can't make the December 10th date. As she's talking all I can do is sit there as tears begin to roll down my face. What is happening is the thought running through my mind and does this mean the transplant is Off? No, my doctor says. She shares that the transplant will cost anywhere from $500,000-$1.0 million and that if we were to still go through with it I would be accosted by the billing department. I told the doctor that I am willing to do whatever it takes to do this transplant even if it takes every single penny I have to show good intention to the powers that be. The doctor doesn't want me to have to live that way but I counter with: look at the way I'm living now, I have no life, I'm in pain every single day, I can't sleep b/c of how much pain I go through, I can barely walk at times. I really can't live this way forever.

Hearing about this setback brought about so much emotion. All I could think about was living in pain for a longer period of time. My heart broke especially because I came into the appointment elated and eager to hear the date set for the procedure and instead I got a bomb--blowing the date back to the unknown.

Dr. Filicko suggested I try to find a Benefactor (someone who would donate/fund my transplant). Now, she said whether I do that by trying to contact a celebrity who would be willing to donate (by contacting an association) like Sickle Cell Disease Association of America or SCDAA or family/friend who has the means to make such a donation. So if there's anyone out there thatis reading this an would love to help me or know's someone who would be willing and able to help me please contact me. You can find my contact information at: http://www.wandefightsforsicklecellanemia.com/, http://www.facebook.com/group.php?gid=134212590888, or comment below with the information~> I would be eternally grateful.

So as of this moment the transplant has been placed on hold. I believe with ever fiber of my being that God has put me through all of this and has taken me to Philadelphia specifically to finally bring me some peace in my health by providing me with the opportunity to do this bone marrow transplant. Though this is a stumbling block. I truly believe it is a momentary one and that I will do this procedure and be Cured! Its just a matter of when and how!

I ask for each and every one of your prayers to help me get through this very difficult time of my life. Thank you from the bottom of my heart!!

In Your Prayers

Written on Wednesday, March 17, 2010 at 7:40am



As many of you all know from reading my blogs, I have been very very sick. My health doesn't seem to be getting any better. In fact, in many ways I have gotten worse. Now, I couldn't sleep tonight and can't believe that I am still up but I am writing to ask you all to keep me in your prayers and to specifically pray for my health. My health has gotten to the point where at my doctors appointment yesterday he talked to me about doing a bone marrow transplant. Now, for those of you who do not know or are unaware of what a bone marrow transplant entails~it is a very serious surgery. I would have to find a bone marrow donor willing to undergo surgery to give me some of their bone marrow (prayerfully one of my brother's or parents). I'd also have to pray that my body does not reject the bone marrow along with other side effects.

I have exhausted every option. So all that I am left with is to trust God and pray for the best. Please pray for me and for whatever transpires with my medical team that they do their best in consulting with me and in any decisions they make. And if I do decide to do this, please pray that I come out of it healthier than I am now.


Thank You So Much!


Love,
~Day

Will Sleep Come?

Once again I'm up. I'm up through the night while everybody else is in that place of serenity and peace--I'm in pain and agony.

I long for the days of peace. The day I get to lay my head down and give my body a gift it hasn't received in months, maybe even years and that gift is REST! I long to wake up to the sound of an alarm clock and not the sounds of my own agony and despair which haunt me each and every morning. I long to be free from the paralyzing bolts that shoot through my legs keeping me prisoner to this bed, this room, this house.

These four walls are all I know anymore. I barely remembered what it felt like to breathe fresh air till I pushed myself and broke free from this prison of mine called Life. YES, air! Yes, civilization! Yes, a world not too far from my own yet light years away in the same instance.

These past weeks have been a dream. Breaking free from those four walls have freed something in me that was lost for a while. Yet I must be careful because this outside world is not my true reality. No, that room and all it encompasses seems to be calling out for me to return.

My spirit within me SCREAMS a resounding, No! No, I don't want to take up those shackles once again but I must. It's not a decision that I make but one my body makes for me and I must Listen! I must walk back into that house, that room. Back into that bed. Surrounded again by those four walls and I must take it. I must take what this life has called me daily to swallow and do it all over again.

Here I am back where I started.

You know it's lonely being the only one up throughout the night. No-one to talk to. No-one to laugh with. No-one to understand the depravity that comes with being born with this disease.

Exchange

Some months ago I got admitted into the hospital--just missing my birthday only because I sucked up all the pain in my refusal to once again be in the hospital on my birthday (July 1st). I ended up being hospitalized July 4th to the end of August. While in the hospital the doctors once again found it difficult to control my pain. Now when I say control my pain I mean using pain medications ranging from very high doses of narcotics to anesthetic drugs to overpower my pain.

Since my pain was still uncontrolled the doctors suggested that I do an exchange transfusion. An exchange transfusion drains all the blood out of my body and replaces it with all new donor blood unlike a regular transfusion that just pumps donor blood into blood that is already in your body. The picture to your side is of the machine used for the exchange transfusion. These are the in-and-outs of what a sickle cell patient goes through and it's hard. It's unbelievably hard! In order to do the exchange transfusion it takes allot more than what one goe through to do a regular transfusion which just requires an I.V. access. I first have to go to the surgical ward and have the surgical nurses prep me. Once they are done I met with the surgeon who was extremely nice and distracting because who wouldn't be nervous having someone cut into the side of your neck. The surgeon numbed the area of my right neck and inserted the tubed needed to proceed with the exchange transfusion. It feels like allot of pressure as he inerts the tube into my artery. Surprisingly he was done in minutes and without me knowing. I was still anxious about him starting that I didn't realize that he had already finished!

Once done I returned to my hospital room. A nurse is assigned to me for the procedure and begins preparing the machine and the units of blood required for the transfusion. I received 7 bags of blood which are hooked up individually. The goal of the transfusion. I received 7 bags of blood which are hooked up individually. The goal of the transfusion is to have blood that does not sickle.

Unfortunately for me the transfusion did not work and my pain continued. Actually, I ended up getting an infection from this procedure due to the fact that the tube was not taken out of my artery promptly. The tube finally was taken out but I had to received daily I.V. antibiotics for a month.

Though this was a trying time for me it was one of a few options I had to help me with my pain and so I truly had no other choice but to do the transfusion and I honestly would do it again. Sickle cell sufferers are left with little options with them being: pain management, fluids (I.V., oral), and transfusions. So to escape from my pain I would do all three of those daily if it would keep me from enduring the things that I go through!


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Wednesday, November 3, 2010

Laying Here!

Here I am up once again in the middle of the night unable to fall asleep. The hours just roll by like the wind. Wasn't it just 8pm 10 minutes ago?!? No, it's almost 1:30am going on 5:30am which is when I finally fell asleep last night!

This is what happens when the pain just won't go away. I'm left the only one up in the middle of the night trying to figure out ways to make the time go by quicker. Will it be watching t.v., listening to music, reading, or roaming the worldwide web?!? Whatever I decide depending on the night never really makes the time go by as quickly as I'd like because there's that constant nagging reminder of why I'm up in the first place and that's The Pain!

If you can relate to my midnight dilemma, know that you're not alone!


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Wednesday, October 20, 2010

The ScALE (1-10)

One to Ten is the scale they use in the hospital by doctors and nurses to put a level on how much pain one goes through. ONE being the least amount of pain to TEN being the most amount of pain.

Whenever I get to that point where I'm faced with having to put a number to my pain I tremble a bit because if I give a number which changes like the wind, will I be taken seriously and treated accordingly? It's amazing how pain functions and how wide of a range it covers. So its hard to put all the pain I feel into a box when its above and beyond any constrictions the One to Ten scale provides.

There are many times where I've given my pain a SIX when the nurse/doc/family member will look at me and say "No, you're definitely not at a 6. By looking at you I would at the least give it a 10." Its hard giving my pain a ranking because what I consider an 8 someone else may give it a 10. For instance, I personally have a high tolerance for pain so when I give my pain a number then that's what I'm giving the medical staff to work with and at times it can limit or affect the type of care that I receive.

When I go to the hospital it becomes a kind of a game trying to really capture how much pain I'm going through with the number I decide to give. It's also hard because my pain isn't black and white as the scale might want it to be. For example, my pain has not just been throughout my whole body but in certain sections of my body. So there are times when I go through pain in my legs, stomach and shoulders and I'm asked to rate my pain. Well in this instance I rate all three areas separately and average them out to one number which I then give the nurse.

Imagine if there was no scale and no instrument in which nurses and doctors alike could use to identify a ballpark area the type of pain we sickle cell anemia sufferers endure! It would definitely make things allot harder. Though the scale is not a perfect science it is a tool that helps identify the level of pain I go through. It's the beginning to a conversation or dialog with the medical staff as to what I'm going through and I appreciate that because its the closest thing to them knowing/understanding where I am at for that moment.


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Sunday, April 11, 2010

Your Circle

I know that for myself, as I was growing up I didn't share with anyone outside my family that I had this disease. That can be a very lonely place though family is by your side there is a balance that's needed. One cannot deal with all that comes from suffering from this disease with only family nor can one deal with it with only friends. There is something that each group of people brings to someone suffering from a debilitating disease.

From my previous blogs you can see how difficult it is for me living with this disease. So when I say that the role that family and friends play is Essential, I mean that when we as sufferers go to that dark place that sometimes comes with the amount of pain, pressure, and circumstances that we deal with, it can be the source that we go to, the strength that we draw from which pushes us forward through the cycle of attacks we endure.

When one goes through the hardest times in there lives, the people surrounding them are the one's that can lift that person up. Without having a circle of friends & family it is very hard for anyone, let alone someone with Sickle Cell Anemia to take on everything that comes with having this disease. My desire here is to highlight & acknowledge how integral the role you play is. Don't underestimate how much of a contribution you make to a loved one. I have only experienced one side & that side is from a hospital bed. When I think of what it takes to be on the other end, where you see the amount of pain an attack brings on, I wonder to myself & ask would I be able to continue to stand there? The fact that one chooses to continue to be that source of support for someone who is chronically sick & the fact that despite how uncomfortable & difficult it may be to witness all the pain an attack (Crises) brings on it only shows your level of Love & Commitment to that person. Though in the midst of an attack (Crises) knowing that a loved one is there by your side, it does wonders for the morale & ultimate well-being of a sufferer.

If you know someone with an illness or someone with Sickle Cell Anemia then reach out to that person. Don't feel like you have to have the right answers or worry that you have to say the right thing. Believe me when I say that just as much as you may not know what to say when your loved one is going through such incredible pain, the person suffering through the pain doesn't know what to say knowing you’ve seen them in such a horrible state. Support. Being there for your loved one means sticking by there side. When we sufferers talk about the pain we go through it may be a bit overwhelming & scary to hear the details of what we endure but you don’t have to shield your fears from a sufferer. Just as us sufferers are seeking a refuge where we can go to you & release all the emotions & trials that come up you too can open up & share your emotions & the trail of seeing us in so much pain. By openly communicating we-together are opening up a bridge of communication, a bond of trust and that is so important so that a Sufferer does not have to feel like they can’t share how they feel and YOU don't have to feel like you have to put up a front that you have it all together. I know for me it became second nature to keep my feelings to myself because the times I did share my heart it would either scare my friend or they would scare me by giving a response like: are you dying? Being shot down when I was open brought up a wall between me & everyone else which can bring both a feeling of discomfort & weirdness. Not everyone can handle a situation but those that care enough & love enough to make it happen despite fears & insecurity—I encourage you to do so.



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Thursday, April 1, 2010

One VOICE

As I began my advocacy for Sickle Cell Anemia I didn't know how much of an impact one voice would make--though it's always said that one voice can make a difference. I didn't know that my voice would take part in making such a difference but as I delve deeper and deeper into advocacy I see how wrong I was and how much I under-estimated what one voice could do.

Now, I am fueled to make an even bigger mark in the Sickle Cell Community. How can I do that? I can do that by encouraging each and every one who reads my Blogs (whether or not you have this disease) to spread the word and educate people on the things that you have learned. I have a website that I created for such a purpose (education). Please check out my website at: http://wandefightsforsicklecellanemia.com/ I encourage you all to share what you've learned and voice questions you may have by going to the~Share You Story~tab and writing in my guest book.

You know, it’s so easy for a voice to die in silence. I was there. I was tired, hurting allot, and lost in my pain. But the one thing that helps me the most is sharing my story and knowing that I'm not alone in this because by sharing my story I've freed myself up to people hearing me and all I go through in addition to hearing what others go through. So you see its not in vein. My disease not only teaches me life lessons that cannot be learned in a classroom but it opens up dialog and experiences that others don't have from living with Sickle Cell Anemia.

I'm not going to lie. Living with this disease is definitely the HARDEST thing that I have had to do and endure. In my advocacy, it may seem as though I just deal with this illness and move on but that's not true. Believe me when I say that there have been many times where I've hit a wall and been sad, in tears and frustrated by the life I was given to live. I've even questioned God and his purpose for me. I'd question many things in my life and wonder why me? Did I deserve this torture of a life? Am I a bad person and having to pay for it with this torn in my side day-in and day-out? It is Hard. It's really hard but whenever I get to that place in my head or even my heart I remember that this disease has also brought me many of the best things in my life. It has exposed things in me and how I deal with various situations. I've learned that I became a very angry person because of the constant going in and out of the hospital and the demeaning ways I would be treated when hospitalized. I became so angry that my anger took over who I was. I had to learn how to deal with and channel my anger. Funny enough, I didn't realize how angry I was till it all caught up with me. I saw myself in the proverbial mirror which was my disease and I had to grow as a person. I had to grow and deal with the resentment that came from all my suffering and in doing so I have become a better person. I have become a more grateful person.

Without having this disease I wouldn't have been able to get to that part of myself that harbored so much anger. I began to learn how I dealt not only with my illness but with everything that comes with life whether it is: relationships/friendships, family, work or any thing else. This discovery then brought me to deal with the other areas of my life that I honestly was not dealing with. Instead of dealing I would just push things under the rug, leaving it to all pile up and make me trip. I kept wondering throughout my life why the same issues would arise over and over again but learning from my illness I saw for the first time how much of my life was connected to how I deal with my illness. As a result, I began to deal. I began to heal. I'm still learning and growing and I have much more to learn but I now see how essential having this disease has meant to my overall makeup and identity.

Now, I've been very ill as I have written in a previous blog so as I talk it over with my doctor I am considering his suggestion to have a bone marrow-transplant. From the things that I have been learning I now know that though Sickle Cell Anemia has helped shape me into the woman that I am--my Identity is not Sickle Cell. Though it has such an effect on who I am and will be (as a result of what I've suffered) it is not all of me. So if I were to go through with the bone marrow transplant and be cured I would not be lost without Sickle Cell.

There was a time when I was well and not hospitalized so often. I began to be afraid of who I would be without Sickle Cell. I know it sounds really twisted but my whole life has been surrounded around this illness. So to be without that thing that I used as a driving force for so many things in my life I began to wonder if by myself I could conjure up that same drive and intensity. When you spend your whole life living a certain way how do you just switch off and begin living a different way? That's the question that would run through my mind till I worked on my security and my insecurity. Finally, I realized that though my illness would drive me to do things because I didn't want to be held back I was present in my drive. I learned that I was present and apart of whatever drove me forward so I wasn't losing out on anything because it wasn't my disease that drove me. It was the will of God within me that pushed me and was my driving force.

There is so much of what comes together to define me. There is so much that comes together to define us all. Don't loose sight of who you are and how you've come to be. We can all learn from each other. We can all relate to each other. I just hope that my words help and you can relate to any of my experiences. Use your voice as I'm learning to use mine.


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Thursday, March 11, 2010

The Purpose

My writing these blogs is not because I have given up. Not at all. If I had I wouldn't be writing and advocating as I am. All I want to do is create better awareness of the detailed things a sickle cell sufferer goes through and the only way to do so is by writing about my experiences. So please don't confuse my openness for complaining. Thank you all for reading and for your support!


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Sunday, March 7, 2010

I Stand Alone

Living with Sickle Cell Anemia can be a very lonely thing. Most people don't know what it is and if they do know their knowledge is limited. Aside from that we feel ostracized somehow for having an illness we did not ask for. When you try to explain to friends/family their understanding is limited because they cannot comprehend the extent of Pain that we go through.

As for myself, it is even harder for me because my tolerance for pain is high so when I explain to friends/family that I am feeling sick somehow those words cannot truly translate what I mean when I say I'm feeling sick. Many times because of the tolerance I've built up I can walk around with a smile, even laughing and doing normal things while in the midst of allot of pain. It makes no sense to anyone else that one could be in so much pain and yet on the outside look fine. This is the trouble I run into when around family and friends. Okay so I will now try to find the closest words I can to define what I mean when I say I feel sick: I feel stabbing pains as though someone were taking a knife and would stab me continuously with it to the point of feeling paralyzed (unable to move my arms), I would feel someone taking several needles and like with a gun shoot me with them all over my body front and back by several people at the same time, I'd feel someone crushing my bones as though all they wanted was for my bones to turn to dust, I'd feel someone twisting my bones to the point of them snapping into two, I would feel someone like the incredible hulk punching me in my stomach as though trying to get through me to the other side of my back. There are so many more analogies I can give that wouldn't give the pain I go through justice but I am left with only words. Words that can only go so far yet my pain continues from there. Think of all the examples I gave above and imagine feeling all of them at the same time. WOW. It's beyond this world how painful it is.

When I go through a crises and while someone is beside me they see my body convulse in pain and all I can do is grab something, anything for help. Many times family or friends will stand beside me in my pain crises and be clueless. Let's go a little further and imagine a doctor or nurse standing beside you as you go through this endless, excruciating amount of pain and they say no. No, you will not receive anymore pain medication. What would you do? Seriously? Would you sit there quietly and just take it or would you fight with whatever you have left to get the one thing that is capable of relieving your pain~>pain medicine. Some people that I have had by my bedside have seen me in the most painful of times but are so clueless that they instead of sympathizing with you or at least try to help instead criticize me in my battle for relief.

God is awesome! He alone knows what I go through. I remember him when I see the heartlessness of others. At times, death seems so close when in the midst of such excruciating pain. I fear many times my body not being able to take any more pain yet because of my God I survive. He is my rock whether or not I have the understanding of people by my side. I sometimes wish some people could feel just for five minutes the hell I go through on a constant basis. But they can't so they're left in their cocoon of how they feel when they are sick. They compare my Hell to their head-ache or their stomach cramps which is so menial compared to the pain I go through. Not to say that their pain is not justified but to limit me by the pain they've only known is UNFAIR!



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Friday, March 5, 2010

In My Pain

Why is it that once I (and so many others with Sickle Cell Anemia) transition from our youth/pediatric unit to the adult unit doctors begin to approach our treatment with doubt, questions, and hesitation? When I was younger, when I told my doctor my pain was increasing and therefore needed my pain medication increased the physician would agree with me and therefore increase my pain treatment. However, as an adult when I ask for more pain medication the doctor hesitates and or ignores my plea. The main reason as to why doctors have a mistrust of Sickle Cell Anemia Patients is because they think we are 1) Drug-Abusers, 2)Faking.

It hurts me to think that the same people that are put in place to help me are the first ones to doubt me. When this happens it is so difficult to get pain relief because the doctor is not willing to work with you. The best doctors I've had were the ones that made me their priority and relieving my pain their goal. It was a relationship in which trust was placed in each other. The doctor trusted that I was in pain and needed treatment and I trusted the doctor would do everything in his power to get me to a state that I felt comfortable.

To make it crystal clear how all of this really affects us as Sickle Cell Anemia Sufferers: you take away the strength of medication needed to curtail our pain crises you take away our power to be free. I say free because taking away our pain frees us from such intense and severe pain so to take that away from us leaves us in a virtual Hell. Would you take or limit pain medication/kemo from a cancer patient? Would one ever question their pain? So why question and doubt ours? What must we do to be treated with respect and hospitality. A hospital is meant to be hospitable but where do that hospitality go when Sickle Cell Anemia Sufferers enter the room? Why when we must fight our disease do we have to fight doctors and nurses? I'll ask again--WHY? Do you not know our pain? Do you not know our suffering? Do you not see our face and our bodies as we convulse in pain? What shall we do? Where shall we go? Must we die off one by one to get the eye of people to finally notice the lack of care we get? Do we deserve the blood-induced Hell? Is that why we're left alone so often to fend for ourselves? What must I do? Shall I scream louder?!? Where to go? What more to do? I do not know. I do not know. I'm left in my pain and agony to suffer--why because a majority of African-Americans are the ones affected by this disease? Did I choose my color? Did I choose my blood to morph into a thorn that stabs into my inner being? No. All I have chosen is Life. I've chosen to live despite this thing that takes my life in so many ways. No We Push past the stereotypes, or prejudices to fight for better treatment and better Respect.


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Friday, February 26, 2010

Being Real

I get so tired. It's harder than anyone can even think or imagine. I try & try to be strong but I have nothing. The only things that keep me going are God and in his strength I get up everyday and push through. Lol, people say the darndest things/hurtful things in response to someone going through a trying time but thank God those things don't bring me Down. Instead I stand up. I stand up and fight even when there's no fight in me I fight. Even when there's no one to relate, I fight. I've fought and fought all my life and have been strong All My Life. In all my strength there lies: weakness, hardship and pain within my heart but that's not always seen. Sometimes I don't want to be strong and that's when I realize my father is my ResT. Thank God for my Dad! Where would I be without him? Wow, what a thought! I'm glad I don't have the opportunity to find that out. Instead I lay here in this hospital bed and look out into the city and see all of what Dad has for me and wants for me and a funny thing happened: I laugh thanking him that I'm here. Though with so much pain I thank you Dad for believing in me and seeing the strength in me and giving me the chance to be molded into the daughter he created me to be. I am who I am because of all my trials. I am who I am because of all the pain that marches through me. I'm called to rejoice in times like these. I wonder what I can find to be joyful for with this debilitating torn in my side, and I look up and realize that the joy I have is in all the fruit that comes from my struggle. I think back to my youth and the drive my Dad instilled in me to not be defined by my torn but to rise up against it and in spite of it. I think of the humility I have succumbed to and continue to succumb to. I think of the Love that’s been instilled in me to give back as a result. I think of the Love of my family each and every time I go through my Crises. I think of the character and woman I’ve become. I think of the blood, the sweat & the tears that bridge my path forward and I see Good. Yes, I see good things. Yes, I rejoice and in my joy I say Thank You Father {my DAD} for all that you have done. Thank You!!!


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Thursday, February 25, 2010

Ignorance

I just heard a nurse speaking loudly after I asked her for pain medication saying in an annoyed and ignorant voice: these Sicklers are supposed to be in and out but they're asking for medication Q1 (every hour). I don't know which nurse it was but I felt it necessary to bring it up with my nurse so she could take it back to whomever it was. So upon approaching my bedside to administer my pain medication I tell her what I heard a nurse say and shared with her my feelings toward that nurse's statement~>I am the one in pain and on the stretcher while the nurse is pain free and  able to stand. So who is truly the inconvenienced one? I say inconvienienced because that is how she made getting pain medication seem like but if I'm not mistaken it is her job as a healhtcare professional. My nurse' response wasn't one of surprise but of defense saying: oh, I don't think she was talking about you I think it was about another Sickler (Sickler is the term they use to call those of us who suffer from this disease), as though whom the nurse was directing her statement to changed the view itself. I shared with my nurse how insignficant it was whom that nurse was talking about and instead I highlghted the ignorance that accompanied that statement.

This whole experience was truly another verifcation as to how ignorant and insensitive people are towards those of us who suffer from this disease. If a nurse (whom has been educated on Sickle Cell Anemia) can display such a level of candor then what am I or other sufferers to expect from the day-to-day leyman individual?

To give another perspective:
It's like being a nurse to a person who is sick with cancer and the patient hears that nurse in the midst of her impatience and frustration about having to care for them. When a patient who is going through so much and dealing with such a hard disease like cancer hears a nurse ranting and saying: these cancs were supposed to come in and out and not ask for pain relief Q1 (every hour). Now, I ask you~does that sound right? No. It doesn't. So why would that same nurse who I highly doubt would have made such a statement about a cancer sufferer feel entiltled and careless enough to make the exact same statement about a sickle cell sufferer? 

Here is something to think of:
Peoples perceptions and what is tolerable. You see sickle cell sufferers are always having to fight not only the disease but the intolerable (such as presented here) on a constant basis. 

Some ppl just don't get it.

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Sunday, February 21, 2010

The Effects

My name is Wande Soluade and I am a 28yr old female living with Sickle Cell Anemia (Sickle Cell Disease~SCD). There are different types of Sickle Cell but the type I suffer from is SS. SS is the most severe form of the disease.

When I was younger I would get hospitalized every 6wks and I would be in the hospital for the maximum of 2 weeks. I would hide my illness from friends at school because I was afraid of what they would think of me. No one at school other than the nurse and a few teachers knew I had this disease. I always said this disease is not going to dictate who I am, my life, and how I enjoy my life! Finally, in my senior year at H.S. I shared with few friends that I had SS. To me that was the beginning. The beginning of making people aware of what SS is and what SS does! I began to open up.

When I went to college it was extremely hard for me to make it to class, or even do the work assigned to me but somehow I made it! Thank God! It wasn't easy (at times I put too much on my plate) and I had difficulty with my GPA but in the last two years in college I was placed on the Deans list despite my illness! Once I graduated from college, my pain crises also graduated to another level of intense pain.
Last summer I was hospitalized for 3months which included me being in the ICU, celebrating my birthday in the hospital, and missing the whole summer. In the past 3 yrs my hospitalizations go like this: I'm admitted into the hospital and am there for at least 1 1/2--2months. Once discharged then two months later I'm admitted back into the hospital for about 1 1/2-2 months. This has been a constant cycle for about 3yrs now.

As a result of the frequent hospitalizations and severity of pain I had to stop working as a social worker, of which I loved doing. I also had to return my car to the dealer, move out of my apartment and move back in with family. Sickle Cell Anemia has radically affected how I live my life. I've had my gall bladder taken out at age 9 when it's usually taken out in others who don't have SS at a much older adult. I've also had surgery on my left shoulder due to Avascular necrosis.

Avascular necrosis (AVN) is a disease resulting from the temporary or permanent loss of the blood supply to an area of bone. Without blood, the bone decays and the bone collapses. If AVN involves the bones of a joint, it often leads to destruction of the joint. For me it is both my shoulders and my back. Because of my AVN, I have had surgery on my left shoulder. I've yet to have surgery on my right shoulder. The end result though is that I'll need both my shoulders replaced. Imagine that! The doctors suggested I have them replaced because of the affect AVN has had on them but I feel I am too young to have them replaced. I feel that way because the replacement will only last for about 20yrs. If I do have them replaced now it would only last till about my 50's. So I decided to wait till my late 50's to have the surgery done. Waiting till my 50's would have them last to my 80's.

Not long ago I was released out of a 2 month stay in the hospital. During my stay in the hospital my knee grew swollen with fluid in it and I began walking with a cane. Due to the severity of my illness, nurses had to come to my home to aide me. Additionally, I received home health aides to assist me in my daily life.

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Many ask me what my pain feels like. Depending on where my pain is at times determines what kind of pain I endure. When I have pain in my legs, back, and shoulders it feels like several knives being stabbed into me simultaneously and none stop! When the pain is in my stomach it's a dull/pressure pain that feels like a person trying to push their fist through a balloon without sucess. My shoulder pains also feel like two rusted metal rods grinding against each other. My back pain feels like having lightning rods shoot up my back-paralyzing me in pain! The pain that I go through is called having a CRISES. It's so intense that the description above can't even touch or come close to explaining how deep and hurtful the pain is. In the midst of having these crises I can't breathe properly because of its intensity.

THE REASON I AM BEING SO BLUNT AND OPEN ABOUT HOW SICKLE CELL ANEMIA AFFECTS ME IS TO MAKE PEOPLE AWARE. MOST PEOPLE ARE AWARE OF HOW CANCER AFFECTS A PERSON BUT MOST ARE UNEDUCATED/UNAWARE ABOUT SICKLE CELL ANEMIA AND HOW IT AFFECTS THOSE THAT SUFFER FROM IT. THAT IS WHY I CREATED THIS BLOG.

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ER

I am currently sitting in the Emergency Room watching how packed it is and wondering how long will I have to sit here in agony. I look around the room questioning who is here for what and when the last time it was they were in the emergency room.  I laugh thinking if only they knew what number this is. This constant cycle of going back and forth to the hospital is something only a chosen few are able to endure and understand. How many times is it though~I ask myself and am dismayed by the large multitude that keeps me from knowing.

One by one people are called. One by one I anxiously await the sound of my name to be called but it's not. It's not yet my turn. In this same breathe I feel the pain in my shoulder grow excruciatingly sharper and fierce as it moves throughout my body. I am truly amazed that I am even capable to write as I am. Then I think of the tolerance that I have built up over the years. I fear that by the time my name is called I won't be able to move and I think of the embarassment that may come if I were to need to be carried in the presence of all these strangers. Strangers. They are strangers and yet I give them this power. Why should I fear them when there is something much greater happening. No. No, I won't give up more power. I need that power to fight this disease with God by my side. 

Uhhhh. The process. Coming in. Waiting. In pain.  Finally, getting called. Going in onto a stretcher. Again waiting. Finally the beggining. Getting an I.V. placed. For me it's placed in my chest where they surgically placed a porta-catheter for I.V. access. Why? Why do I have this? It's because of the endless amount of times I have been stuck by a needle to get blood and to have an I.V. access. The I.V. access helps push my sickled cells through my veins: A normal occurence so many don't even know to appreciate that I have to pray to have happen. Being stuck so much led to my weak veins that would blow at the contact of a needle and the cartilidge that exists due to constant pricking. I have no more veins to work with so surgeons implanted a catheter in my chest connected to my gugular vein that goes up my right neck ever so subtley. I know it's there but many do not. When they see it they think it's a vein. When I see it, I know it's a tube that liberates me from the constant proding. Yes. Now, when I'm stuck neither I or the nurse have to hope and pray to catch a good vein or even a vein at all. No. Instead, I get stuck in my chest to get access to the catheter which allows nurses/docs to take blood so much more easily than trying to get my blood through a vein (with it's many sticks) and to give I.V. fluids so much more easily and so freely. Blood is drawn and I.V. flows through. X-Rays done. What next? A doctor comes in to ask questions already answered three times before getting on the stretcher.  I answer. Finally the doc leaves. Once the doc leaves, you know treatment is not far behind. Yes. Pain medication. Relief. Then more pain medication and more pain medication.  After the third pain medication then you either leave or get admitted into the hospital. For me it's always an admittion into the hospital. All of this takes place for about 5-9 hours. Then you wait some more. Wait 1-3 hours for a bed upstairs. Once upstairs constant pricking, blood, 24/7 pain medication on drip in addition to pill pain medication and being stuck by a needle that has medication to thin out my blood (since I can't move much due to the pain) which would normally occur if I was able to walk. Then I have none stop nurses coming in and out and a nurse aide noting exactly how much I drink.

No sleep. No real privacy. Once better, then discharged from hospital with a list of drugs (some new some old) to take at home. Once home weak from all the pain and from not being able to move much while in the hospital. So I build slowly to get to the me I know myself to be. How long? It differs.  Once strong I'm back to being ME only to go through it all over again. That's an experience of a Sickler, NO, a RARE GEM. Using the word Sickler only demeans us more. We are rare and we are gems~>Rare Gems!

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Thursday, February 18, 2010

The Scary part!

Since I was a child I've known that death was a very really and very soon possibility for me. Of course, all of us are going to die one day but to know that you may have to deal with the pure reality of that fact because of the blood that runs through your veins is scary for a little girl. Since I was a baby I've been in tremendous and agonizing pain but it didn't scare me. No one really knows this about me but since my illness has grown increasingly worse those fears I developed as a child have become very real to me. I talked to one guy I befriended about it and to another but understanding is something that people lack when it comes to this disease or when it comes to me. You see though I suffer greatly from this disease i don't look like it. It's as if you have to look like your red blood cells are clotting together keeping blood from flowing and holding back any oxygen from getting to the other parts of my body creating EXCRUCIATING pain-to look sick. Many times I wonder. Who can I go to? Who can I confide in? Those of whom I have stirred up the courage to talk to at times take what I go through as a joke but its no joke. Sometimes I just want to SCREAM! Just because I look okay doesn't mean I am. Living with this disease any sufferer will tell you that one develops a threshold of extreme pain. Many times with a smile on my face in the crowds of people surrounding me with people I called friends I stand in pain with no one knowing. I pray its only fears. Death will one day find me but I hope it is after I have done all of what God has planted me here to do.

My talents are minimal. I cannot sing, dance, or do what so many others can do but I can speak up. Speak up for the disease that God purposed me to have so that I can somehow make a mark in my community or maybe even the world. That is why I work so hard to create greater awareness and education when it comes to Sickle Cell Anemia and not because I happen to suffer with it but because it is so highly mis-understood, ignored, and out-casted. So many speak of and know of AIDS & CANCER as they should but do those same people know of SICKLE CELL ANEMIA? The majority don't. Those that do know of it see it as a Scarlett letter thinking, "only black people get it while others think most of the people who have it are drug users-abusers faking their pain to get a fix." I say that because that is what some have thought of when it comes to me. While they think that and hesitate to aide my pain I sit there in pain-DYING-FIGHTING THE TEARS-swallowing the agony that comes from the simple movement of my circular red blood cells transforming into the shape of a sickle. Those simple acts are what place me in the mercy of others every single day.

That's why I fight so HARD and so much! In whatever ways I can. Many can't understand but my goal before I do leave this earth is to help people to Truly Understand-not judge, criticize, overlook, or doubt but UNDERSTAND. Wherever~whether it be in Africa or the United States.

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