From the Heart of a Warriors’ Caregiver

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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

9 COMMENTS

  1. 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

  2. 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.

  3. 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…

  4. 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!

  5. 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

  6. 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

  7. 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

  8. 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!

  9. 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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