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