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From the Heart of a Warriors’ Caregiver

From the Heart of a Warriors’ Caregiver

Hello everyone! Sickle Cell Warriors’ family is quite honored and proud to introduce our latest writer. Tamara will be writing a series about dealing with sickle cell from the perspective of a caregiver. It was quite inspiring just listening to her talk, and I am sure that we all will learn something from her story. –Tosin

Welcome to my Team!

Twelve years ago I married an awesome guy. He was exactly what I needed as a strong woman. Our first year of marriage was phenomenal! We traveled, we bought stuff, and we enjoyed life together. Then, year two began with a reminder— sickle cell anemia pain crisis. What was almost non-existent to me started to grow into a daily monster. It was coupled with many visits to the emergency room and week-long stays in the hospital.

Leaving him was NEVER an option, how could I? He is a gentle, loving and caring person; I would never want to hurt him. So, I endured the long painful nights, feeling helpless with a trivial understanding of what it took to care for him. Was it a challenge, yes! Every day was a challenge! I remember spending many days at the end of his hospital bed crying, begging the doctor’s do something about his pain. Sometimes, after the begging, pleading and crying, they would minimally increase his pain meds, never enough. He would scream through the night and then finally someone with a little compassion would fight for the pain medication to be increased, still in very small amounts. One time he was released from the hospital after a week stay only to return the next day for another week stay.

Somewhere in year five, along the development of his partial blindness in one eye, and avascular necrosis of both hips, courage crept in my heart. Five years had passed and by trial and error I had learned a lot as my Warrior’s caretaker. As I continued to learn how to take care of my Warrior, I became a Warrior for him. I was a force to be reckoned with at every doctor’s appointment, emergency room visit and hospital stay. I started by asking questions, I asked questions about everything. I did not care who came in or why because by the time they left his room they knew he had an advocate and they called me by name. I would not allow them to discredit my words and I was willing to challenge all treatment if it did not make sense. It was year 10 when I made the greatest discovery. I was his personal expert!

Experts are important in life. There are General Doctors and then there are Experts. An Expert is trained to do one thing. For example, when given a choice of going to a general Doctor or and Podiatrist (Foot Doctor) for a foot problem, I would go to the expert for my foot. So, with that in mind, when I am in the room with my Warrior husband, I am the best person to speak on his behalf. I have studied him for many years, I have a PH.D. in his care. When I am in an appointment, ER, or hospital room I make sure they know that I am informed and I will not be ignored. They are on my team not the other way around.

Normally, when my Warrior is in the hospital, teams of doctors come in at all times of the morning. If he is in a lot of pain, it is difficult for him to speak. I live with my Warrior every day, who better to give them information when he is in too much pain to speak for himself. In previous years, I was barely listened to. Now, my husband and I are a team, we choose who is a part of our team. When he is not well, that choice is mine, a Warrior Caregiver!

Now, we are in year 13. Being a part of my team is a privilege and not a right. Doctors are experts in their field and I respect that what they have to say comes with years of experience. However, when the respect is not mutual, we must get to a point where we are on one accord. Generally, I ask to speak to the Doctor when my Warrior is incoherent in the hospital. If it is his regular Doctor visit, I attend the appointment with my Warrior. I express my concerns and ask to be included in the decision making process because I am knowledgeable about my Warrior as I understand they are knowledgeable about medicine. It has not always been the best outcome and we have had to find Doctor’s willing to care for him. Unfortunately, there are not a lot of Doctors that specialize in Sickle Cell Anemia. Most of the time, the Doctors have a lot of book knowledge and little to no experience. Recently, we moved to another state for better care (we moved after researching the area first). His new Doctor has been a great asset after a few bumps in the road and we are currently working through some of our concerns. Nonetheless, I would like to hope it will get better as time progresses.

All in all, my twelve years with my husband has been great. As his Caregiver I have been challenged to grow so I can be the best for him. Sometimes this required the greatest sacrifice but it is worth it when he has pain free days. In addition, I will continue to seek for the best care for him because I want his quality of life to improve. In order to do this, I cannot be silent. It is very important that I push for improvement in the health care industry by challenging the care they give when it is not appropriate for my Warrior. As my husband and I welcome others to our team, we will maintain caution and boldness. Doctors do not know everything; I am the greatest asset when I am in the room with my Warrior. I will not be intimidated by any Doctor’s knowledge or easily swayed in the face of adversity and ignorance. Above all, I will be ready to change when necessary and remember God will not give me more than I can bear!

Romans 8:37
No, in all these things we are more than conquerors through Him who loved us.
Joel 2:7
They charge like Warriors; they scale walls like soldiers. They all march in line, not swerving from their course.

Proud Warrior Caregiver
Mrs. Tamara Adams

Related posts:

About Author

TAdams

TAdams

I am a Warrior's Caregiver. When I married my Warrior on June 3, 2000, I thought I knew what I needed to do in order to take care of my Warrior on a day to day basis. As I journeyed, I found out that I didn’t know enough and there were very few resources to help me, other than his family. What I needed to know his family could not teach me because no one had experience as a spouse! So, I learned all I could to help my Warrior but I also learned that the community as a whole does not have support. In addition to the minimal support, there is very little awareness of Sickle Cell and its effects on many loved ones! So, my focus is to help other Warrior Caregivers as they take the journey to deal with adversity and obstacles faced in the day to day care of their Warrior. I want to bring awareness that will disband incorrect information, misdiagnosis, unnecessarily long hospital stays, Doctor’s uneasiness of high doses of medication, strange looks in the Emergency Room, negative stereotypes and piggy backing Cancer research to help the Sickle Cell community! My goal is to help our community live productive lives, informed and unashamed!

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21 Comments

  1. Warrior
    Warrior October 08, 20:49

    I hope that we will all try to help with the awareness of sickle cell anemia. So to all of you out there that come across things like this please try to pass this on.

  2. Maajeida AbdRahman
    Maajeida AbdRahman October 14, 10:17

    First and foremost, Peace and abundance to you Mrs.Tamara Adams and your family. I am an African-American Muslim woman from NY and I have been married to my Warrior for sometime over 3 years now. I just want to say that your article is inspiring, beautiful and completely on point. Your experience in dealing with your husband’s pcps and on staff doctors when he is admitted is exactly what we go through. You feel as if you are backed in a corner by these guys and the insurance tyrants. You are even forced to come of our your normal character and be “a little ignorant” in order to get the point across so that your Warrior can get the care that he needs. Reading your article has given me new insight and more enthusiasm to keep trying harder and to do the best I can for my Warrior. Please continue to write more articles (you could even start a blog or something about people whoses spouses are SC Warriors!) and any recipes, health information or new insights that are good to suppress SCA. I would love to hear more from you. I love your reference to the Bible also. May God, Exalted and Majestic is He, reward you,your husband, and your family perpetually in this life and the Next. Thank you

  3. TAdams
    TAdams Author October 15, 21:13

    Thanks for you encouragement! I am so excited to see that the article has touched you and inspired you to continue fighting. You can do it! With God all things are possible! I pray blessing for you and your husband. Year 3 for my husband and I was challenging, we had a lot to learn! Needless to say, there was a lot of trial and error. Also, I understand your frustration. Sometimes you must “go there” with the Doctors; however, make sure you write everything down when you are battling for your Warrior. As soon as anyone enters the room, write down time, date and names;Ask why are they there, what is the proposed treatment and what they believe will happen because of this treatment. Also, make sure you have a copy of his records. My husband and I are currently living in a new state and we are working on getting all of his records. Typically, they will only give you the a few years. Most SCD Warriors have very long and extensive records, if only the last few years are copied, you will only have a partial view of the medical history. In addition, You have the right to keep his records private. Everybody should not be viewing his records. Only those responsible for his treatment should be viewing his records. I hope this information will help you.
    -Tamara Adams
    A Warriors Caregiver!

  4. Akpoghene Eseoghene
    Akpoghene Eseoghene October 17, 03:08

    Thank you so much for the article T.A, am really inspired on how much courage and faith you have. Knowing that with God nothing is impossible…

  5. TAdams
    TAdams Author October 17, 08:57

    You are most welcome! I pray God’s blessings for you! Let me know how else I can help you!

  6. Keisha
    Keisha January 02, 06:31

    Thank you so much for this article. I’m glad we’re not alone. My husband and I started dating almost 8 1/2 yrs ago and our first week of dating he told me he had Sickle Cell. I had heard of it but didn’t know exactly what it was, that was until his first bad crisis. I watched him lay there with ER doctors sticking him multiple times trying to get a vain to put in the IV and my strong handsome boyfriend at the time started to cry. Something in me knew I couldn’t cry because I had to be strong, so I stood there until they finally got a vain. I later went outside and fell apart.

    It was difficult being his voice when I was his girlfriend, because I wasn’t related to him so doctors usually looked pass me. After a year of me realizing that they will not take me serious unless I was family. Whenever he was in too much pain to answer the question I’ve grown to love “how much pain are you in?” I would answer for him and when they asked my relationship to him I would tell them I’m his fiance.

    We’ve been married for almost 6 years and have been talking about having children. I have been frightened out of my mind knowing that having a crisis isn’t like having a common cold. When he’s in pain he gets my full attention because he deserves it. I’m trying figure out how would I balance having a baby when my husband get sick. I know that God will show me the way.

    I thank God that he doesn’t get sick as much since moving from NY to Georgia. I don’t miss the monthly visits to the ER. I didn’t think of it before but I am a warrior, because I’m fighting everyday for my husband to be healthy and remain that way.

    Thank you. Please continue to write.

  7. Tanjila
    Tanjila January 11, 09:29

    I applaud you and thank you for your courage to love my fellow warrior. I was diagnosed with SS at 18 months of age and have been moving and shaking since then. I have been married for one year on February 21, 2013. My husband is my partner and I am so very thankful that he was courageous and compassionate enough to get to know and love me despite this disease. There are many that are too afraid to get too close to us, yet they do not realize what they are missing. Stay strong and stay encouraged. May the God of our strength, peace and healing continue to bless and keep you and your husband. My prayers are with you and I wish you the best.
    Thank you!

  8. TAdams
    TAdams Author January 11, 18:37

    Thanks and blessings to you and your husband. Please continue to stay connected to this website.

  9. TAdams
    TAdams Author January 15, 19:58

    Thank you for your strength! I am so encouraged by Warriors! Against all odds, you persevere! I pray God’s blessings on your marriage! Let me know if i can help in anyway!

  10. Trenelle Andrews
    Trenelle Andrews April 01, 19:24

    This is my first time visiting this website and I am thoroughly impressed by the depth of knowledge and information available. This is definitely a big help to me and will subsequently be to my kids later on. Questions that have been too embarrassed for me to ask, have been answered here! Thank You and good luck and God Bless SDC warriors…

  11. TAdams
    TAdams Author April 02, 09:16

    Thanks, I am happy this article blessed you! Please look forward to more! Thanks!

  12. JoyousJoy
    JoyousJoy June 12, 02:34

    Mrs Adams, God bless you abundantly for your love, may a star be kept in heaven for you. I am saying this because am single and living alone and it gets very lonely during crisis when I have to fight it or somehow reach the phone and call for the ambulance when things are bad. I have the trait but suffer symptoms and crises too. So may God bless you over and over again for your love and may He give the strength to keep on fighting for him…

  13. JoyousJoy
    JoyousJoy June 12, 03:27

    Just a small addition -Its refreshing to hear such a testimony from a giver There are many takers in this life but God wants us to give and He loves a cheerful giver, so well, Thou art beloved of the Lord! Cheers!

  14. Crssi
    Crssi December 14, 22:10

    Hi to all, I was moved by your story T Adams..I myself have fell in love with a SCA Warrior..We are not married and actually live in separate states..I can only empathize what he and all who are battling this, along with the caregivers go through..He went into crisis about a month ago and is still in the hospital..Due to I am not family, like others, I am unable to get any info regarding his status..We have only been together for 6months, yet this is his second bad crisis he has had that landed him in the hospital for weeks. He told me the 2nd of our 6 months that he has SCA..Is it normal for a crisis to keep someone hospitalize that long? I have not given up and will not give up on him..That was the last request he asked of me…God is still in control

  15. TAdams
    TAdams Author December 15, 20:27

    Hello,
    I am so excited to hear from you! First with regard to finding out information! When I decided I was going to be a friend to my Warrior, I made sure that I was very close to his family! I would call his mother and talk to her about life in general. I asked her what I needed to know about her son. I spoke with his siblings to get as much information about him as I could. When I decided to love my Warrior because love is a choice, I volunteered to go to the hospital when he went into the hospital. I would sit with him and be by his side. I understand this is difficult for you but make sure when he gets out you begin building a relationship with his family. This was helpful when he went in the hospital. I could not call the hospital but his family understood that I was serious and I wanted to help. As we got closer to marriage, his mother gave me more responsibility. The responsibility was helpful but nothing prepared me for the on the job training! Now, to the question you asked, when a Warrior is in the hospital, many things can keep the Warrior in the hospital. The time frame can depend on pain levels, infections and many other types of challenges Warriors face. The most important thing to do at this point is to try to get in contact with the family if possible. Please understand that because of the nature of Sickle Cell, information about his progress will not be given easily unless you have built a relationship with his Primary Caregiver! I pray this helps you! I will continue to keep you in prayer and your Warrior! Please let me know if I can help you with anything else!
    -Tamara Adams My Warriors Caregiver!

  16. TAdams
    TAdams Author January 11, 05:38

    JoyousJoy, Continue to be strong! God will send you someone who is willing to help take care of you and it will not be a burden to them! I don’t see taking care of my husband as a burden but rather a priveledge! He is such a joy to be around all the time! Blessings on you!

  17. babe
    babe June 04, 05:56

    God bless you Tamara Adams. I’m in love with a SC warrior. Nevertheless, I’m still thinking. Don’t know what lies before me. I pray the grace to be there for him though

  18. lydia bawa
    lydia bawa December 14, 03:14

    am scd carrier am 22yrs of age;a nigerian. Any time; my friends talk about marriage and children I bleed from the inside because I may not have such considering my sickness but reading this post here gave me hope that my wish may come TRUE that I will find my warrior that ill stand by me even though for us girls finding husbands is realy difficult but we still try and have hope no matter hw little it is..tamara adam keep inspiring us.thankz

  19. Cos
    Cos March 16, 20:16

    I have been married to an SDC warrior now for 11 years, and also have 10 years old boy and girl twins both with SCD. I’m sure everyone here can relate to our struggles, and I’m truly grateful to be able to come to places like this and read stories that inspire me to remain strong in the face of adversity. It’s a constant struggle to keep the kids healthy and in school. My husband often goes to work dragging his leg or holding his arm awkwardly, but God bless him, he still goes. On more than one occasion, both my husband and son are hospitalised with crisis at the same time. Just as recently as a week ago, both twins were hospitalised at the same time. I have come to the realization a long ago that the doctors treating my family are coming strictly from their books’ point of view in their approach to treating this horrible disease. For one thing, they’re all white and could never truly relate. I now have the respect of most of the medical personnel we come in contact with, because I believe word has gotten around that I’m not to be taken lightly in this regard. We in my opinion, reap the fringe benefits of cancer. It’s not really about us. Know your rights and privileges as a caregiver to SCD sufferers, don’t just blindly accept everything the doctors tell you, understand and know this disease. Let them understand you know what you’re talking about and ask questions. Thank you TAdams and God bless!

  20. vibrant
    vibrant April 08, 14:36

    thank u so much sister tamara,im a sc,and praying that wil find one to love me for me,sis from naigeria dnt be discouraged.keep GOD First and pray always

  21. Dk
    Dk January 05, 01:42

    Inspiring and encouraging post !
    I am in a fix right now as I am in Love with a warrior. He is absolutely awesome and looks nothing like it. I would like to experience the crises episode to know what one looks like, but fortunately he hasn’t had one in close to five years. Mrs. Adams I would like to have your email personally, is that possible please? Thank you

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