Complex seems to be the word that best describes the way life twists and turns for me. I am in awe of how each way I go I am faced with stress, fear, confusion, pain, sadness, frustration, desperation and worry. However, intertwined with this I feel gratitude, respect, joy, strength, relief, encouragement and hope.
Complex describes the health issues both Chloe and Ryleigh face every day. Their illnesses are not the standard and create concerns and issues for their health care teams and our family.
Ryleigh is facing her third surgery on Monday to repair/remove a fistula that has contributed to her lack of recovery from her previous surgeries and treatments. This will require 5-7 days (as long as she does not face any complications from her clotting issues and scarring issues that cause blockages of her bowel) in the hospital. Third time around for surgery results in all of us being somewhat relaxed and prepared. This time we understand what is going to happen and will be ready for the pain afterwards as well as the recovery process. Ryleigh continues to feel poorly as she is fatigued and just feels yucky… Once surgery is completed we will be meeting with her GUT doctors and nurses to come up with a plan (yet again) to manage the Irritable Bowel Disease symptoms. Our goal is to get her healthy for the start of school — 6 short weeks but we are thinking positively that it can happen.
Chloe was admitted into BC Children’s hospital on Tuesday as she continued to be in extreme pain and was having difficulty coping. Seeing her in so much pain and discomfort was very hard on me. She tries so hard to tough it out…but the pain has become so severe her methods of dealing with it were not working. I decided to take her to the emergency room because I was having difficulty helping her and felt that both of us needed health care professionals to help ease her discomfort. As a result she was admitted that night and over the last 5 days she has received amazing care. This is not to say she did not receive great care from her doctors in Vanderhoof and Prince George but the resources at BCCH are easier to access. As a result she has been seen by specialists in a timely manner and has had support to become healthier. Chloe has been diagnosed with a pain syndrome. The treatment and recovery is a long and daunting one but she has an incredible attitude and spirit. She is willing to try whatever is needed to get better – three P’s in treatment: Pharmacological (medicine), Psychology (coping strategies) and Physiotherapy (movement and rehab to teach her body to move again). Again a complex road to recovery. (I will dedicate a post to explaining pain syndrome as it is challenging to understand)
Complex is the word for my own health also – having a chronic brain disorder (Bipolar) over the last 12 years has been a challenge but it is in remission and I have not had a flare in years. I am fully aware of how stress and lack of self care (sleep, nutrition, relaxation, and exercise) can cause my illness to become worse. I am working hard at trying to maintain some time to myself (even if it is small moments) to reenergize. I just wish my “plate” would be emptied a little bit so I do not feel overwhelmed as often! Luckily, I am surrounded by a wide circle of family, friends, students, coworkers, and my community and each day the support, kindness, and love reenergizes me.
This weekend the girls and I are taking the time to get settled and prepare for the week(s) ahead. Knowing that whatever happens we have the strength to deal with it.