Monthly Archives: July 2013

Embracing the grey!

Embracing the grey!

I was in one of the hospital corridors early this morning just taking some time to myself. A neurology resident that took care of Ryleigh last time we were here. He noticed me and said hello. We had a good chat as he noticed that both girls were in the hospital the past couple of weeks. We were shooting the breeze and he asked how I was doing…I gave the standard answer — doing as well as expected and just keep on doing what I need to do. He happens to nonchalantly mention that I am a lot more “greyer” then when he saw me 6 months ago. Now I must share that I consciously made the decision to not hide my grey anymore with dye (as I have been doing since I was 16!). I figure I don’t look older but wiser and feel like I have earned every grey hair. Six months ago I would have been embarrassed and apologetic saying I did not have time to go to the hair dressers.
Over the last 13 years I have learned that we need to embrace who we truly are. I enjoy each birthday as a Yippee that I have made it through another year. Each day I share with my daughters that real beauty is from the inside out, that beautiful come in all sizes, shapes, and colours. I try my best to get them to embrace their “imperfections” as their uniqueness. How can I model to them this if I am constantly questioning how I look, do I have wrinkles, putting down myself from how I look.
As baby boomers get older society seems to be focusing on aging as a negative thing. I think the contrary – getting old is something to be proud of and not something to avoid. The reality is that we will age – we will get older. But we can choose to live each day with dignity, courage, love, laughter, empathy, compassion, and reflection.
Enjoy who you are – be a role model for the youngsters who are watching us!

Understanding Chronic/Complex Pain

One of Chloe’s health care professionals (a psychologist) recommended this video to explain what Chloe is experiencing. It is only 5 minutes long and I liked how it is explained. Important to remember that Chloe is not faking or making up the pain — she is truly experiencing it. Her nervous system is confused and thinks that she is in pain even with the simplest movement, bump or touch. There are times that it is non-existent and then times when it is unbearable. The pain results in her being extremely fatigued and at times unable to do simple activities or tasks. She has embraced all “5” strategies that are recommended and is working as hard as she can to get better. Right now she is trying to do an activity like shopping, visiting Ryleigh, going for a walk, etc for 30 minutes twice a day. She has appointments with the adolescent team this week with one doctor who specializes in complex pain. As well as appointments next week with a psychologist to help her with coping skills and her worries (which contributes to the neurological system being overstimulated and working overtime!). This will take time and adjustments….but the best thing for her is to try and learn how to live with the pain and cope the best she can.

When it seems the darkest…there is hope

When it seems the darkest...there is hope

In a few hours Ryleigh will be facing her third surgery this year. She has been brave but last night in the wee hours of the morning she had lots of questions that I could not answer — will this time be the one
that fixes everything so I can feel better? Why can’t the doctors make me feel less yucky? How come each time I am told I will feel better, I don’t?
I find myself asking the same questions and the only answer I can muster is HOPE.
Hope that Ryleigh will feel better to start living a normal teen life!
Hope that surgery goes smoothly and Ryleigh has a quick recovery with no complications!
Hope that Chloe will have a few moments today of being pain free!
Hoping my own illness will be quiet so I can care for my two amazing daughters!
Hope that we will be coming home next week!

I realize that hope is the word we use when so many things are out of our control. It is a kind word that soothes the anxious moments late at night. It is the energy I feel from the countless selfless acts others have shown me. It is what gets me through each day!

Complexity….

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. 

Back Blogging

Late at night — it has been awhile since I have posted.  For some time I thought things were going smoothly and my life was becoming more calm and thankfully boring!  But alas, that is not the case.  I was so not ready for the phone call I received Thursday morning.  It was a phone call from Ryleigh’s surgeon — you know it is not good news when the doctor calls you at home!  Usually I am in contact with the nurses that take care of Ryleigh — the doctor was a bit of a shock.  But once again I am thankful and impressed by the care Ryleigh is getting. 

Ryleigh has had an “owie” on her incision site since her last operation.  For the last couple of months they were certain that it was a granulation that would heal on its own.  However, it never got better – in fact it became worse.  It was bigger, odd looking, and continuously seeping some brownish, orange fluid. It is not painful but very inconvenient.  I sent a picture to her ostomy nurse on Thursday  morning as the sore was not getting better.  Two hours after sending I got the call from Dr. Butterworth, her primary surgeon.

She explained to me that she is certain just by the pictures and the symptoms that this is not a granulation but in fact a vistula.  She is concerned that it occurred not only because of the surgery but the fact that Ryleigh’s IBD is still in a flare and not  managed yet.  A vistula  is when the skin layers from the bowel and another area like the skin become intertwined.  She believes this is what has happened to Ryleigh – it is like Ryleigh has a mini stoma.  A small part of her bowel is on the outside of her skin. 

Ryleigh has not been recovering from her other surgeries as well as expected – Dr. Butterworth explained that this is most likely one of the reasons.  Therefore, she will need surgery to fix this vistula — if her IBD is not controlled better it may come back. Ryleigh and I are leaving for Vancouver the third week of July.  The surgery is scheduled for January 29 but she has to go the week before for some preliminary tests and preadmission.  Chloe will not be coming this time. 

Chloe is still suffering from arthritis like symptoms – extreme pain, swelling of most joints, nausea, and fatigue.  It would not be reasonable to have her come to Vancouver as she is weak and would not be able to walk any distances for buses etc.  Of course it will seem odd to not have her with us – Ryleigh and Chloe help each other so much in keeping spirits up.

Once again I am thrust into another medical situation that I do not want to be in — I am frustrated, angry, sad, and anxious but surprisingly determined and will continue to advocate for the best care possible for both my girls.  My life is like the Never Ending Story intertwined with Groundhog Day. I can only hope for a happy ending!