Where SICKLE CELL fALLS w/ BLACK LIVES MATTER ✊🏽 ( Happy Black History Month !!! )

Woman in Pain by Wojciech Babski

I tOO used to think we shouldn’t solely state that BLACK LIVES MATTER ( BLM ) but that ALL LIVES MATTER. But then George Floyd...

A video surfaced revealing the “arrest” of George Floyd begging for his life, begging for air, Calling Out to His Mother as he was held twisted and dying. After watching the horrific video of George Floyd’s arrest I was shocked, disgusted and afraid. I now understood that though ALL LIVES MATTER, It’s BLACK LIVES THAT ARE AT STAKE and so it’s BLACK LIVES that MATTER. From slavery till today, African Americans have and continue to be negatively treated, marginalized and killed. Systemic racism, the center of it all, is alive and strong. It’s unspoken of and unaddressed but ingrained in the DNA of the American society. 

Well, the continued shootings of Black Men, Black Women, our Black Children scream aloud seeking attention that there’s still so much wrong with how we treat those that look different from ourselves. No one’s been listening. A black man had to die in such an atrocious way for people to finally hear, come together and make a stand against the brutality Black Men endure within the hands of the police. If there was no video that captured what happened. Where would we still be today? The American society would still be unaware and unchanged. Except for those in the black community who experience it everyday. 

The video helped America to see in vivid detail what many have been blind to or refused to see. Though there have been videos that have existed showing similar fates. This one captured the eyes, ears and hearts of the Nation ( 🇺🇸 ) and the World. ALL LIVES, yeah, but America had yet to put any importance on the Black community, BLACK LIVES. Saying BLACK LIVES MATTER is a statement, A CRY OUT that indeed BLACK LIVES do MATTER !!

In the Sickle Cell Community many black lives are lost. Although, in almost every listed top 10 disease in America for some reason, it’s Blacks that are proportionally affected so much more than any other demographic. With Sickle Cell Disease many of us take up the personal mantle and become Advocates who spread the word on Sickle Cell (what it is, who it affects, and how you get it).  

Racism (systemic racism) which thousands have banded together to protest, let’s not dismiss it, has a very big stronghold in the medical field. I hesitated in writing this piece because I thought, maybe this isn’t the time to bring to light this specific issue. I hesitated because so many healthcare workers (doctors and nurses) have been working extremely hard to tackle the pandemic that has taken over the world. Doctors and nurses have put themselves on the front-line and many are even dying of COVID-19 as they contract the virus from the very patients they care for. 

But wait, that’s what starts it. You hesitate and say “at a better time,” “later,” or “not now.” But then no such time comes. 

I first want to say, I give my heart to all the front-line workers, especially the doctors and nurses charged with taking care of COVID-19 patients. The sacrifice it takes to put oneself in harms way in order to care for people is simply beautiful and courageous. And I know that a large number of medical staff have lost their lives in an effort to help tame this pandemic. What they are all doing, there is no one else who can and so they’ve worked and worked. Overworked, overstretched, tired, scared, and mentally drained these doctors and nurses still go to work the very next day despite the large number of lost lives they witnessed the day before. I Salute You All !!

I am truly grateful for all of their hard work and fighting spirit. When I go to the hospital in this pandemic I too have witnessed their spirit and am so thankful for what they’re doing. However, none of these take away from the fact that systemic racism takes place in the medical field. The few times I’ve brought it to hospital staffs attention. It was either blown off, not taken seriously or filed away someplace never to be seen again. 

           

But the truth is we shouldn’t talk about Black Lives Matter without talking about Sickle Cell Anemia, one of the diseases which affect more African-Americans than any other ethnic group. Sickle Cell Anemia is a blood disease that predominantly affects those of African American descent. In the United States, Sickle Cell Disease occurs in 1:500 African-Americans (Southwestern Comprehensive Sickle Cell Center, 2007). Sickle Cell Disease occurs in many other races and ethnicities, also. Sickle Cell Disease occurs in 1:58,000 Caucasians, 1:1,100 Hispanics (eastern states), 1:32,000 Hispanics (western states), 1:11,500 Asians, and 1:2,700 Native Americans. About 1:12 African Americans carry the Sickle Cell Trait. (source: txhealthsteps.com)

The numbers are clear on how it affects more Black Persons than any other group. As a result, I’ve learned that Sickle Cell sufferers aren’t given the same considerations, assistance or Trust as those who suffer from others illnesses. One illness for example, Cancer. Now Cancer is a predominantly “White” disease of which much attention, research and education is dedicated. When a Cancer patient says they are in pain they are more likely to be believed than doubted. They are also more likely to be given the necessary treatments that are needed with no question about the pain they are going through. With Sickle Cell Disease many myths, biases and prejudices exist. These prejudices go mostly unaddressed even when they are spoken up about. 

The stigma that goes along with being a Sickle Cell sufferer is astounding. I know b/c I’ve experienced those prejudices. I’ve been face-to-face with the racism and negative attitudes that many Doctors and Nurses have. 

Not so recently I was overcome with pain from my head all the way through my body, my bones, to my legs. It was as though I could feel each sickled cell that flowed through my veins. As I was laying in the ambulance grabbing and massaging my body as best as I could (though it merely soothed me than ease the pain). All I could do was count the minutes and seconds till we finally arrived at the hospital - emergency room. When we arrive and after triage, the struggle begins to get me treated. It takes some time and after many tries to get a vein. Once we do, I can then get the pain medicine that can help ease my agonizing pain. The doctor, after three rounds of of treatment sees how the pain medicine took effect. After sharing that it only took the edge of my pain, the doctor decides to admit me. 

I get to the floor about 3am or so. The journey I now have to take involves a revolving door of nurses who try to get a better vein so that I can get all the medication that I need and possible transfusion if necessary. It takes hours with three nurses trying to find a vein. Two on one arm and one on the other. They stick and prod with four tourniquets on my arms so my veins pop up.  They stick me with needles about five or six times. However, it’s to no avail. So the doctor now has to bring in a sonogram machine to guide him into gaining access to a vein. 

He looks at the site on my arm he’s found with the sonogram and injects into my skin. Soon after, he looks away at the screen in front of him and begins moving the needle around in order to find the vein and gain access, which he finally does!! I exclaimed in joy and thanked the doctor. I’m joyful because I finally get to begin the treatment I need (PCA) that can help to stabilize my crises.

PCA or Patient-Controlled Analgesia, as defined by the National Cancer Institute (NCI) Dictionary of Cancer terms is: a method of pain relief in which the patient controls the amount of pain medicine that is used. When pain relief is needed, the person can receive a preset dose of pain medicine by pressing a button on a computerized pump that is connected to a small tube in the body. 

I write in such detail so you can then understand how I feel when after all of that and only after a few days of treatment. A doctor from Hematology-Oncology comes to my room without even examining me and declares that my levels are stable and I will be discharged the next day. To educate you all, when it comes to sickle cell anemia, though one’s levels may stabilize does not mean that the patient is not in pain. Again, Blood levels do not equal ( = ) the amount of pain one is in !!! So I shared with the doctor exactly that. 

Well, that seems to have been a mistake because the doctor went off on me yelling, asking me if I’m telling him what to do. If I’m a doctor? Do you think I don’t know that? I’ve been a doctor for 30 years and you’re telling me?! I tried to appease him and explain that I was only reiterating the fact that though my blood counts are fine I myself am not and I continue to be in extreme pain. But the doctor so matter of factly said that I look comfortable and don’t look like I am in pain at all. So no matter how much I cry out how much pain I’m in, the doctor has already long ago made up his mind about the state of my body. But the last straw was when he began by saying that I was on too high of a dosage of pain meds at home. I reminded him that it is my doctor that prescribed that dosage. Which I’ve been on for years. This doctor then told me it is because I am a drug addict. That if I wasn’t, then there would be no need for such a high dose of meds. 

I was completely and utterly flabbergasted. It took me a while to collect my thoughts. But then I understood. His racial prejudices are what summed up his treatment of me. After he left I laid there dismayed and shocked about how free he felt to be so blunt and in my face he felt he could be with his racist behavior. No matter what I said he wouldn’t listen. He took away the PCA treatment I was receiving and knowing how my pain gets worse at nighttime I wept in my bed scared of what the night may bring. What scared me even more was knowing I would be sent home with the amount of pain I was still enduring. 

I felt trapped with nowhere to go and with no one who could help. So I went home and tried managing my pain as best as I could with the meds I had. However, none of it was enough and I ended up having to call for help. This time when the ambulance came I asked for a different hospital and we were off. But as we were on our way I was so anxious and worried. Would this time be any different? I’ll have to once again go through the sea of needles.

The above was just one example of the racism and prejudices we encounter as sickle cell sufferers. Nurses are the first faces we see when going to the hospital and many times they are no different. I’ve had nurses search my personal belongings (my purse) because they believe I’ve brought drugs to the floor. 

What are we left with if we don’t comply? Especially when we’ve gone through all the injections and sticking (to get blood). If we don’t comply, I’ve been told I wouldn’t receive any pain medication or they’ll refuse to treat me. Many times I don’t feel as though I’m even treated as a human being. But where else are we to go? Who else is there that can help us? That’s is why many blogs and social media like my own exist.

All these fears cripple me at times when I’m in my bedroom in pain contemplating whether or not I should go to the hospital. It pushes me to endure more and push off going so I don’t have to possibly experience such things. But yes, racism exists everywhere and though doctors and nurses are “supposed” to help us. They are people. People comprised with their own beliefs and sometimes prejudices. But unless a video comes out or a recording exposing such things, I doubt that much attention will be paid. I just pray that another form of George Floyd won’t have to take place for actions against racism toward Black Persons who fall ill and are left in the vulnerable hands of such doctors.

 

Trust

It's amazing to me how hard it is to find a doctor who is truly invested in your care and overall well-being. I've seen so many doctors-- I couldn't even give a number to the amount of doctors I've seen. When it comes to my care I am very involved. You'd think many would be involved in their care but most patients just go along with whatever the doctor says without really asking questions or voicing concerns. My approach to my care is that of trust, communication, and dialogue.

Trust to me goes both ways. I need the trust of my physician so that I can get the best possible care. If my physician doesn't trust me then there's limitation to understanding and believing what I share with them about my health. For instance, when I share what I believe is affecting my pain--if my doctor doesn't listen/trust me then no matter what I say the doctor will dismiss my concerns and not take into account my insight into my health. Then there's my trust in my doctor. Trusting in my doctor is the key for me in feeling comfortable. If I trust my doctor then I know that the doctor has my best interest at heart.

Having open communication with both my physicians and nurses means making sure that all the doctors and nurses involved are on the same page. During one of my hospitalizations I was put on a specific medication by one doctor in the morning but by afternoon another doctor decided to remove me from that medication. The next day the doctor who initially had me placed on that drug asked me what happened since he was unaware that a change had been made. I was left having to explain to him that another physician did not feel as though the medication I was placed on was helping me so I was taken off that drug. Not long after--I was placed back on that medication. I shouldn't have been put in that situation and I shouldn't have been compromised like I was. Sudden changes like that can have an adverse effect therefore pushing any progress I had back (which means increased pain).

As a result of this experience I've been very adamant with all my physicians involved about communication so that such a thing does not happen again. Now, before any changes are made I ask to make sure that all parties are not only aware of upcoming changes but are in agreement on the best plan of action for my health. Aside from it being important for the nurses and doctors to be on the same page I continuously advocate that I be made aware of any and all changes to my medications, treatment, tests etc. so that I can understand the reasoning behind such changes and so that I can voice concerns that may arise. When it comes to sickle cell anemia many in the health care system agree that we the patient know our bodies better than some physicians. The best doctors that I work with are the ones that don't pretend to have all the answers but are the ones that are humble enough to admit that I go through this all the time and I know my body better than they do. The doctors that ask what do you think, what dosage should I start with, what works best for you, are the best because its not about pretenses but about quality of care and pain management. In the same breathe the best patients are the ones that admit that they don't have all the answers and are willing to work with their physician. It is a collaborative effort treating sickle cell anemia and no one person has all the answers. That is why I play such an integral role in my care. From knowing why a certain blood test is taken to the dosage of a medication--I make sure that I am aware of what is entering and leaving my body. If I don't take my health seriously then who else will? If I don't fight to be heard then who endures all the pain? If the doctor makes all the decisions with no input from the patient then who lives with the ramifications? The answer to all of these questions and many more is, I do!

Whenever I'm placed on a new drug that is unknown to me I do research until I am completely comfortable & knowledgeable about that drug. This is my life. I take it very seriously. I want to encourage you to do the same and make sure that you are a part of your treatment & care. Upon being discharged from the hospital during one visit I was discharged on a new drug that I've never heard of and so I began my research. When the doctor came in to do their discharge summary I had a lot of questions pertaining to that drug & the physician shared how impressed she was with my diligence. It didn't even occur to me that that was what I was doing until she said that. So it got me thinking and it encouraged me to share with you all how important it is not to be a "yes" man when it comes to your health. Many people treat doctors like God-whatever they say goes. If you have a question, ask it. If you have some hesitations then voice it. If your physician doesn't want to work with you then maybe it's time to start looking for someone who'll want to hear those questions & concerns because they should want the best for you. You are your best advocate so Advocate!

I Am Not My Hair.

I went through several days of chemo. For the first week, it was twice a day at 10am & 2pm to be exact. I handled it really well, so well that I though--ok I can handle this and it's not as scary as I thought it would be. After the first week I still had my hair in place so I thought maybe I won't loose all my hair and instead all that I may encounter would be some thinning at the most (but I was told that the chemo has a delayed reaction so I may not get the affects till later).

Then I began my second phase of chemo (which I was unaware of at the time--was a very potent chemo) according to my nurse, this chemo intimidates even a veteran cancer patient who undergoes continuous chemo treatments. Now this set of chemo had one that ran for 48hrs straight and another which I received at 10am for two days straight. It was a pretty immediate effect for me. Not long after they ran I began to feel extremely fatigued and beat up as though I was "run over by a bus" is how one nurse put it. I could barely keep up with what was going on around me or do my normal activities such as go for walks and do my day to day stuff that was important to building up my strength and maintaining my spirits so that the whole process doesn't take hold of me and keep me down. At this point my spirits did begin to go down and it was harder than ever to even get out of bed let alone think of going for a walk or going to the game room to keep my spirits up. One of the nurse technicians did pull me aside and gave me a sort of pep talk, reminding me that each time I pull myself out of bed and do something--anything that pushes my recovery closer and closer and builds my spirits up more and more will make it easier to then get out of bed. She reminded me that though it is normal & exactly what all Bone MArrow Transplant (BMT) patients go through I can't give in and dwell in that hole that is ever so tempting to stay in. Not long after this needed pep talk even though I felt like road-kill I decided to pick to my feet and go for a needed walk. Though it was difficult pushing myself, it was rewarding because I did feel a bit stronger and lighter in spirit.

Around this same time was when my scalp became very sensitive to touch and even as I rested my head on a pillow my head would ache. Then I noticed my hair was beginning to thin and soon noticed more and more hair coming out on my comb. The eye opening experience was when I was washing my hair and all I could feel was all this scratchy thing around my neck and ears only to look down at the drain to see all of my hair caked all around me. At this point I was using a face towel to was my hair instead of vigorously washing with my hands and nails because of how sensitive my scalp had become. Though I knew my hair would fall out, experiencing it and seeing all my hair on the floor and all over my face towel is another thing. I found myself getting a bit emotional seeing the final product in the mirror where minutes before I had the normal me with a full head of normal hair no longer there. Now all that remains are fuzzy hair patches throughout my head. Over the next couple of days those fuzzy patches were more balding than fuzzy patches.

The next thing for me to do is to get a wig. My mother was going to purchase one for me but the bone marrow unit's social worker shared that they will purchase the wig for me. She provided me with a catalog to look through and choose from. It's hard picking a wig because I have never worn a wig before so its a weird thing for me to do but many woman wear wigs so it should be fine. I think my trepidation comes from fear of looking like I have a dead carcass on my head. I want the wig to look like I have my normal hear. I don't want to look fake in any way but there are good options in the catalog I have and I can only hope to choose the right one that will fit me and look great on me. Until the wig comes in I've just been wearing a hat and using scarves to keep from getting chills because my scalp has been getting allot of breeze lately, lol. Once I get the wig you'll see my new but hopefully natural look where you'll hopefully question whether or not I even have a wig on. Until then I'm left thinking of that song that INdia Arie sang named I Am Not My Hair which is so true in its lyrics. This is only a temporary occurrence and in about 6 months all my hair will grow back. Nurses have shared that many patients have different hair grow back in and most times the hair that grows in is better. So prayerfully I get an even more beautiful head of hair in the upcoming months.

Bone Marrow Transplant (BMT) has Begun

It's been 15 days now and 4 out of those five days I've been on two separate Chemo regimines. I'm taking it well so far but I'm told it'll all hit me in a day or two since it has a delayed reaction. As the first ever Sickle Cell Patient undergoing this procedure in this hospital it is a huge deal to them and to me. I hope they get what they need and vis-versa as we make history together.

I've been very open about living with this disease because I feel like someone has to be. Someone needs to speak up so people can understand what we as Sickle Cell patients go through. I could just send a post about Sickle Cell Anemia and leave it at that but putting a face, a life in the forefront will make a much better impact on people hearts and encourage them to learn more and more about Sickle Cell Anemia. Sorry this paragraph was a bit of a side note but a much needed one.

Though I've handled the chemo well there has been some affects like: 102 fever, a metallic taste in my mouth, and weakness. I know it seems like a lot but what I mean by I'm handling it well is that, I've not let it weigh me down, I'm walking around the Bone-Marrow Unit (BMT) unit, my spirits are up and I'm holding my food down so far. As a result of the fever I have I've been put on I.V. antibiotics as a precaution to possibly having bacteria. They took some blood cultures to determine whether or not I do have bacteria or something else. The results so far came back negative but it is monitored over a couple of days so I hope that the first go around -->being negative is a sign for the next 'round of results.

The second round of chemotherapy has been the worst. The intensity is allot more and its affect on me is 2 folds. My body is beyond weak and fatigued, it feels like lead is in place of my bones. I have begun to loose my body hair and my scalp has started to feel tender to the touch. Since my white blood cell counts are now at Zero I have to be very careful for mouth sores. To prevent mouth sores I must wash my mouth out with salt water after every meal & snack. If not then I will get a mouth full of sores and be unable to eat let alone drink. Once my white count begins to rise I won't have to worry about the mouth sores. I do have to worry about bleeding out since my platelets are also low and since they are low my blood is unable to clot or glue together-- leaving me susceptible to bleeding out.

The chemotherapy is what brought my white blood cells, hemoglobin, and platelets down in order to undergo the transplant. Throughout the chemotherapy the nurses have to watch out that my white count goes to zero, my hemoglobin stays above 10 and my platelets stay above 20. By the time the transplant comes my white count will be zero, my hemoglobin 10, and platelets 20. If my hemoglobin goes below 10 I get a blood transfusion (of which I've had two) , and if my platelet goes below 20 I get a platelet transfusion (of which I basically end up getting every day due to the effect of the chemotherapy).

My Brother, Fola.

I have two brother's Fola (2yrs younger) and Ayo (7yrs younger). Yes, I'm the only girl! Growing up my brother's and I were extremely close. We were best friends but something happened on the way to change that. As we hit our adolescents we basically grew apart. Growing up in my household was hard (I could share my whole sob story but I won't).

My childhood was a bad one--leaving my family, more specifically my brother's and I to endure allot. In doing so my brother Fola dealt with things differently which led to our growing apart. My youngest brother Ayo and I though have been able to maintain that close knit bond that we developed in our youth. Over the years I've tried to get back that brother, sister, friend bond with my brother Fola but you can't go back in time and I can't take away the struggles that led us to where we are today.

When I was looking for a donor I thought beyond logic and I thought the brother I have the closest relationship (Ayo) would beyond a doubt be the match I so desperately needed. But to my surprise the name that came from my doctor wasn't Ayo but Fola and what she said next blew me away! Apparently, all they needed for me to find a match was 50% but my brother Fola was 100% match and 100% usually takes place with twins of whom my brother and I are not. So, I'm first thrown aback by which brother is my match and thankful I have a match at all but even more flabbergasted that Fola is a 100% match.

I know that there are no coincidences so it's definitely God at work and I've seen him at work in my brother and I's lives since finding out that he was the match. Since finding out he was a match, I do believe that Fola and I have gotten closer and that it was God's design to use this experience to not only strengthen our relationship but to reconnect us on a deeper level and to more importantly strengthen him as an individual.

Fola deciding without hesitation to do the transplant really touched me because I really wasn't sure what his decision would be but he has jumped at any and every opportunity to take tests, travel for blood-work, and he has opened himself to risks. So I write this blog in honor to my younger brother Fola who is in a major way saving my life. With the frequency and level of pain crises that I go through and at such a young age doctors have suggested that my quality of life would get worse and I may endure several organ failures and even death. This transplant is the only answer both the doctors and I have to the infinite number of questions my level of illness seems to bring up.

I am thankful that my brother Fola and I have more conversations. I'm grateful that upon finishing tests needed as a donor and heading back to New York that my brother now stops to encourage me that if I were to need anything at all I should call him. I'm truly grateful that my brother now out of the blue will call me just to see how I am and check up on my treatment when hospitalized. I am really and truly grateful that my brother Fola and I are no longer strangers in the same family but are growing together now rather than apart as we did years ago.

I want to encourage all of you to work on those relationships that were severed and meant allot to you because if you don't you will only continue to miss out on the love and friendship that individual can bring. I know for my brother and I, it took some time and it took my health reaching the end of its rope to begin bridging and rebuilding over that gap between us. It will take time but the important thing is that we're both working on it. I encourage you to do the same.

Radiation/Chemo Therapy 4.4.11

Today was my radiation appointment. This appointment was in preparation for the radiation I get upon admission on 4.22.11. So to prepare for 4.22.11 I was called into the radiation rm where I was asked to step into a chair. The chair was secured to the wall with allot of devices/contraptions (reminded me of the chair used with death penalty inmates). As soon as i sat down the nurses began to strap me in place. They began with a strap that had a cup for my chin which was drawn across my chin & belted in (going from rt to lft). Next they put each of my arms into slings and then a glass plate was fastened across the front of me to the chair. To get a better understanding of what the chair looks like you should refer to the first image from the left, above.

The purpose of using this chair is to make sure patients cannot move so that the proper measurements can be made. Once I was done Dr. Shi entered and began to draw on me making two oval like circles with plastic adhesions outlining the ovals throughout. You can see a picture of one of those ovals in the pictures provided in the black & white above.

When I get my radiation therapy I will be sitting in the chair secured. The device that looks like an x-ray machine in the above photos will point towards me emitting a surge of radiation. I was supposed to get several days of radiation and a couple days of chemotherapy but a change was made where I will get only a day of radiation & several more days of chemotherapy (2wks total).

I am a bit nervous about getting radiation but feel better knowing that the therapy will not be as intense as it was previously supposed to be. The radiation I was going to get before the change was supposed to really give my body a beating according to my Dr. I'm hoping that with the decrease my body will recover better from the treatment. What I am nervous about now is the chemotherapy I'll be receiving for two weeks. I have never undergone chemo. All I know about chemo is what I've heard and it's not a fun experience at all.

Within those two weeks of chemo I will consistently get a day or two break every couple of days so that my body can strengthen itself for the next round. Losing my hair due to this treatment I know will be difficult for me. There's a big difference between cutting ones hair and having ones hair fall out due to treatment. Yes, I anticipate that this whole process will be a difficult one but all of these added sufferings that I am soon to take head on--are for a higher purpose/end result unlike the cosmetic result I was going for when I purposely cut my hair.

I hope that many of you will see the depths of which we as sickle cell anemia patients are willing to go through to gain some sort of normality, some sort of balance. I hope & pray that the end result out-shadow the difficulties I may face during this whole process. Please keep me in your prayers because I need every single prayer I can get. I would be more than grateful if you could put in prayer requests at your church, Thank You!

The Thought Does Count

Seeing someone with an illness like Sickle Cell Anemia can be understandably intimidating to most. It's hard to know what to do or what to say. You want to help but it's hard to know how to which leaves you doing nothing which is not likely your intention but it is where you end up.
I just want to really Thank everyone that has pushed past the intimidation and the apparent fears and have really shown care and concern consistently and wholeheartedly. You know being sick as severely as I am for some random reason leaves me in one of two places at all times. I'm either in my room bedridden or in a hospital room strapped to IV's, heart monitor's, 24/7 pain medication pumped into me, and tests, more pain medications given round the clock by the nurses, specialists consulting you, doctors confused and searching for something, anything that can provide some kind of solution. With this barrage of things going on and more can you imagine the encouragement that comes from someone coming to visit you in the hospital in-spite of any fears of seeing you hooked up to any and everything in the room. Even just writting a note on my Facebook wall with thoughts of concern and love have left me feeling touched and thought of. I have an unbelievable example of someone who has not only been patient, caring, and thoughtful but has gone the extra mile again and again. This is someone that I've only just meet under a year but she has really been the support and friend that encourages me as I suffer through my pain. This person always calls just to say hi and when my phone died and she didn't hear from me she drove to my father's house and wrote a beautiful and touching note of her just saying she's thinking of me and hopes that I'm well--to not feel alone because I'm not.
Just stop and think. How inspiring is her heart? Thinking of how sick I am and unable to really do any of the normal things friends do whether it's going to the movies, or going out to dinner it seems I can no longer do but she doesn't resent or move on to another person who can really give to her what a normal friend could. Many times she'll call and I can't even call her back because of how much pain I'm in and how bedridden I am. Despite not being able to call her she doesn't resent or get upset or even understandably selfish but instead she just says that she understands and tries to do something so that we can hang out and encourage me. Many times she'll call just to pray. Her encouragement and unselfish heart truly touched me and I thought her heart was something to really Highlight for people to see and learn from because I know I am truly learning from this sister what it truly means to love and befriend as Jesus calls us to love and befriend one another. This sister's heart and example is what needs to be celebrated. Thank You for you Friendship and Heart Michelle. I hope that even in my illness and inability to give to you as I'd like that I can be a great friend to you as you've been to me. I thank you.



Love,

Day

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.

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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