Thursday, October 08, 2020

Into the abyss

 I sit here pondering the choices mankind has made over the last few months. I would use the the term “human” but that insinuates feelings, thought, and general overall concern for fellow beings.The definition of human is as follows: a representative that is susceptible to the sympathies and frailties of nature. I fail to see how this applies to a majority of us? I am so very frustrated by the choices many have made for the general wellbeing of us all over the last 7 months. In the beginning of this pandemic, there was fear and doubt. People actually questioned educated scientists and doctors with the worlds population health. I was disappointed by the videos and theories posted on social media. I am dumbfounded by the ridiculousness. 

I would sit back and read posts about right wing theories that this virus was a made up hoax. A plot created by the government in order to control us, like a herd of cows. I would take in all the “fake” new theories about military engineered viruses created to thin out the worlds population. I would remind my children that all the choices we make can effect the overall well being of those we come in contact with. I reminded my children that one person can make a difference. To stand proud, and tall. 

I am reminded everyday that this virus could affect my family greatly. Annika and I both live with cystic fibrosis. This disease does compromise our immune systems. We are prone to repeat infections that could make us weak. We are reminded everyday that Covid-19 could very well kill us. We don’t walk around with blinders on or with a false sense of security like many of you do. I would dare to say some of you even think you are untouchable. 

I am writing this to remind you that you are not! For the last 4 days I have sat by my daughters bedside in our local hospital. I have been her caretaker, her cheerleader, her counsel or and her nurse. She is in the hospital because for a few months she has been experiencing abdominal pain intermittently.Just recently the pain has increased and has been accompanied by fevers, vomiting , and  generally unwell. We came into the hospital a few days ago where we were kept overnight for observation. Annika was sent home the following day because blood and ultrasound came back negative for any known cause. 

The hospital is a dangerous place for us to be in. Generally a hospital is were sick people go to heal. A hospital is full of germs and disease. A person with cf tries to avoid admissions for fear of contracting something will there. We often do intervenors antibiotics at home to help prevent cross contamination. So the act of going home was a normal event for us. We were going home even though we really didn’t have any answers. 

I took Annika home hoping this was just a stomach bug, even though my “ momma senses” told me different. We were not even home for a full 24hrs before we were back in the ER with intensified pain and nausea. I asked the doctor if there was any chance that Annika has a micro gallbladder because she was a meconium ileus baby. To clarify things. : Annika was born with a complete bowel blockage at birth. Babies that are born full term with a meconium ileus  are 80% likely to have cystic fibrosis. A high percentage of meconium ileus babies with cystic fibrosis are born with micro gallbladders . A micro gallbladder is very small and is more prone to infection and calcification. The reason I asked the doctor about this was because on the previous admission an ultrasound was preformed. The doctor stated that they couldn’t detect her gallbladder, that it looked like it was permanently contracted and wasn’t visible. This confused him. His actual words were “ I have never seen this!” So once we were discharged I started doing research. I have sadly come to the realization that not many doctors actually take the time to research the unknown. You would think that doctor would have done a simple google search on : missing gallbladder”, “ Gallbladder not visible during ultrasound” or better yet “ missing gallbladder and cystic fibrosis”. Immediately a research paper popped up on the information about micro gallbladder and cystic fibrosis. In the article it stated that their is a link to hereditary and micro gallbladders ( I was diagnosed years ago, and later had to have mine removed) and their is also a huge relation to cf babies with meconium ileus babies having these micro gallbladders that spasm ,contract, and calcify. Once a micro gallbladder does this it will not been seen by an ultrasound. A HIDA test or endoscopic ultrasound is the only way to positively identify the issue. 

Thankfully I had a doctor this time that took notes and asked questions. Annika’s pain could no longer be controlled with morphine, it actually worsened the pain. She had to be switched to dilaudid, tordal and acetaminophen combination. The HIDA scan was preformed and lo and behold my daughter had a micro gallbladder with her binary ducted blocked with stones. We are presently waiting for surgery. She is being constantly supervised and monitored while we are waiting for a spot to open up. 

This is were my frustration lies with my original “mankind” comment. I am witnessing the effect our selfishness has had on the medical care system. People often reply....I’m not going to get sick. I am young, healthy and basically you might as well throw in the word invincible. Here is a wake up call. IO know three people whom have died of this disease. They were under 40. They thought they were fit too. I also know  four people with cystic fibrosis who have contracted this virus. Two are dead, one is on a respirator and the other has been listed on a double lung transplant because their lungs were destroyed by this virus. I also know many online friends who have been affected by this virus one way or another. They have family and friends who have had the virus, have the virus or have died because of the virus. I am witnessing a medical system that is over run by the demands this virus has put on it, I am witnessing medical staff run down and run thin. I have witnessed tests and surgeries delayed because additional measures use be implemented because of this virus. This virus that once again is growing in numbers because of the selfishness of people. STAY THE FUCK HOME! I understand you have to work....I respect that, but honestly can’t “Uncle Johns “ birthday wait. Can’t that social dinner with your bff be put off? Can’t that trip to the beach be better thought of and planned. Look I get it. This isolation thing is crap. Humans are meant to be social beings.....but how about making responsible choices like our family is forced to? If you want to meet with friends....make responsible plans. Have a COVID test, wait in quarantine until you get a negative and then gather. If you need to go out to the beach, walk or campfire....WEAR A MASK! Stay 6 ft apart. Do your part. You may not be effected by this virus, but your virus carrying , asymptomatic ass might be carrying this virus around to share with others. It still amazes me when I hear people say” I cant wear a mask, it gives me a panic attack!” , “I can breathe in a mask!”, “ It flares up my medical(undocumented)condition!” Ok, let’s address these EXCUSES FOR SELFISHNESS! If a mask gives you a panic attack, wear a clear face shield. There is no documented medical condition that is actually irritated by a mask. Asthmatics, cystic fibrosis, COPD, and heart conditions are not effected by mask wearing. If you have one of these underlying ,medical conditions....guess what ? You are in the top percentage of people Who are highly susceptible to the dangerous of this virus. I want you to seriously think about your safety! For those using this as an excuse to not wear a mask ( You all know one of these people) GROW THE FUCK UP! Time to start thinking of other people besides yourself. Our hospitals are over flowing. Our medical staff are being run thin. Our medical procedures are being effected. And most importantly to me.....your selfishness is effecting the overall care of my daughter. 

The United States has a “leader” who minimalized this virus and its effects. He made choices that changed many citizens access to proper healthcare, than turned around and tweeted about how we shouldn’t focus on how this virus will effect us. A leader who never wore masks or effectively practice safe distancing. A leader who “became infected” with this disease and received the best healthcare known to man, Something that more than 70% of his citizens wouldn’t be able to afford to have access too. And then he proceeds to belittle and mock the reality that this virus has had on many peoples lives. Many people have lost loved ones or become sick themselves. Many people have lost their jobs and homes or businesses because of this virus. Many people have grown defiant. Many people have lost their humanity.

Our Canadian leaders are not much better. Their wavering on rules and practices are sickening and contradicting. Exposing children and teachers to a second wave of this disease just in time for flu and cold season. Our ERs are already starting to feel the outcome of our decisions.

I say ENOUGH! We all miss our friends and family. Remember you have you 10 people, but those people have their 10 people, and so on, and so on. Stop exposing yourself to the dangers that don’t need to be exposed. Make responsible, informed decisions. If you have to be in a group, get tested. If you need to get out of the same four walls...wear a mask and wash your hands. Make wise choices, because your unwise choices are starting to affect my family. We have no choice with cystic fibrosis. We didn’t ask for this disease. We do our part and try to be as safe as possible. I am begging you, please think of others and start doing your part.

I have never stepped away from someone for their political views, choice of religion or lifestyle....but I am actively making a choice to avoid those who cant respect the lives of others. 

Sunday, October 04, 2020

Into the battlefield

 This weekend has been a different one for sure. Full of extreme highs and extreme lows. Parker had a great weekend , full of firsts. Annika has had a horrible weekend full of pain. David has been preparing to go back to work tomorrow. I have tried to keep busy and distracted. Between getting things ready for my girl guide unit, caring for Annika, cancelling a planned camping trip, rejoicing with my son and trying to keep up with regular responsibilities. I have tried to forget how truly painful this weekend has been for me. I didnt remind my family that this weekend marked two years since I lost my father. October 2, 2018 at 11:50pm my father took his last breath, and I wasn't able to be by his side when he passed. I was laying in a hospital being prepared for a bowel resection. I never got to say goodbye. Shortly after his passing I was discharged to come home and heal. My son misses his night time stories of police and military. My daughter misses his whistling, kisses and egg sandwiches. I miss everything about him. My mom was starting to become positive, and looking forward to traveling with her best friend. Sadly that never happened. Within 5 months of my dad's death my mom's best friend was dead from cancer. The one thing my mom and her best friend shared was a cancer diagnosis. In February of 2019 my mom was diagnosed with leukemia.Now I had to focus on her battle, and put my mourning aside. I had to stay focused and positive. I had to put everyone else before my needs. Why ? Because that is what a daughter, mother and wife does when there family needs her. She exists for them.

I struggled with my health. I watched my daughter struggle with her health, and I watched my mother slowly deteriorate. 

Then came this cursed COVID-19 virus. A virus that I have lost friends too. A virus that has stole so much from so many people. A virus that forced everyone into isolation and changed the way people interacted with everyone. During this virus I watched my mother take her last breath on March 27 , 2020 at 4:55 am in the morning. I was honoured to hold her hand while she did it. Her son and I were by her side . It was the most beautiful thing, yet the most horrific thing I have ever witnessed. My best friend was gone....and now more than ever I feel her loss because I no longer have a cheerleader in the sidelines to remind me that everything was going to be ok. My mother would always remind me that this too will pass. I have suffered so much loss in such a short time , and still have not allowed myself to grieve. And today my daughter faces another admission of isolation with only me by her side . No visitors, only me because of Covid-19. I face taking my daughter into the battlefield, only to be possibly exposed to God knows what because her pain is worsening. Her pain is my pain. I do not have the support of my father calling me trying to cheer me up. I do not have my mother giving me the biggest bear hug. My biggest supporters are gone. I miss them desperately. I sit in this ER room, remembering being here last in March 2020. When I had to make medical decisions for my mother. I am reminded of her passing with every second here. 

Friday, October 02, 2020

A Supernatural Gift

 Sometimes a passion or a gift is lost in everyday life. The realities of our world changes our paths on so many levels. Family responsibilities , health crisis and additional pressures on my timetable caused me to put aside the best therapy I ever had. WRITING! 

Why did I allow the one thing that helped make the world make sense , cease and desist? Why did I let the one passion in my life go to the wayside?

While talking to a dear friend on the phone today, life hit me in the side of my head with a brick. Now granted that brick was not made of stone...but the impact was just as hurtful. I realized that while offering this friend advice on pushing through the negatives of the world, I have not been living my true words. I used to pour every feeling and thought into this blog, never knowing where my words would lead me. 

During that beloved conversation, I was reminded of this blog and the joy it gave me. I was trying to lift her up and remind her that she was valuable, that she mattered. I wanted her to know that she was making a difference. I told her that fate brought us together. Everything that happens in life, happens by devine intervention. During this conversation she called me supernatural, that a friendship like mine is from another world. It’s funny how two people from two different worlds, from two countries over 8000 km apart can feel so connected. That two strangers , over time have created a bond like family. Soul sisters

Little did this friend understand that with this simple conversation , I was reminded of a love that I let slip through my fingers. A love of words.

So I dedicate this post to my soul sister, Georgiana. Thank you for reminding me that words can change a person’s world. Words can make a difference.

Today starts a new beginning .Today I was reminded that sometimes you need to look to your past, in order to move towards your future. 

Thank you my friend,

I love you.

Thursday, December 11, 2014

A Year in a Glance.....and what a year it was!

    I am going to start by saying I am so thankful for so much this year. I am thankful for family and friends, and the complete support they provide us. I am thankful for my hubby and son, without them I am sure I would stumble. I give credit to those single parents dealing with sickness. I am thankful that my hubby has a good job, because even with health benefits our average medical costs run close to 5 digits out of pocket. I am so very thankful that I live in Canada, because they consider cystic fibrosis a life shorting disease so some of the really expensive drugs are covered. If it wasn't for this, we would be renting a little apartment just to make things meet. We are truly blessed!  I am so thankful for my parents,who live on the same property. If it wasn't for them when I was in hospital for myself or for Annika , I would be a mess worrying about Parker. It is so helpful having them with us for this journey. David can go to work knowing his children and wife are cared for. It takes a village to raise a family with cystic fibrosis.

      This year has been a little crazy, but I wouldn't change a thing. I have learned many lessons. I have met new friends, and rekindled some lost friendships. I have spent  124 days hooked up to an IV this year. My arse has been in bed healing for almost double that. I have lost 40 lbs, but gained so much insight about life. We are nowhere near rich, we actually borderline below middle class after medical expenses, but let me tell you WE ARE RICH in love, faith and life! We scrimp and save every penny we have that doesn't go to bill to go on a family vacation every two years.We earn each and every adventure.We want to see the world. We live life to the fullest, not worrying about the future. We live in the NOW!

     Annika was decorating her little Christmas tree in her room. This year she decided to string her Bravery beads that she has collected over the last 4 years. A bravery bead is earned when a child undergoes different procedures in hospital. I was dumb founded by the total. I cried privately for her, even though she NEVER cries for herself. As a parent you want your child never to feel pain, you want to be their hero. Well, she is my HERO.
     Here are the totals that sum things up for her journey with cystic fibrosis in JUST the last FOUR years:

 485 days (69 weeks) in hospital admission, 16 cystic fibrosis clinics,17 specialists visits,117 dressing /bandage changes, 1,932 infusions of IV antibiotics , 5 line placement or removals (port or picc lines) 8 surgical procedures, 236 pokes(iv starts, blood,etc) that's an average of 59 needles a year! 12 chest x-rays, 3 ct scans, 2 MRI , 13 g-tube replacements (changing MIKEY out) , 892 hours of physical therapy, 2,920 nebulizers (breathing treatments), 336 days on oral antibiotics. Whew!

        Have I blown your mind yet? She never complains, and I have only seen her breakdown three times in those last four years. She is an absolutely amazing kid. The nurses always chuckle when she says thank you after they just stabbed her with a needle. Thank She takes on average 6,205 enzymes a year to digest her food, because her pancreas doesn't work so she can't digest fats. Her other oral meds, not including the oral antibiotics total to 988 pills a year. A whopping grand total of 7,198 pills she swallows on average a year. In our last four years it totals 28,792 pills.
      So when you look at our beautiful child, and think she looks would never know she was sick.....WELL CHECK YOURSELF, perfection takes a lot of!

      I am thankful to have her and my son. My handsome young man who is trying to find his way into the world. Discovering what pre-adulthood is like. His journey in this has been a roller coaster of ups and downs. David and I always worry about him. Anyone who has a sick child, and then throw in a sick worry about them being left out. You worry about them being jealous of the other child. You worry about resentment, and you worry about depression. What our family goes through with this disease, is unlike most families journey.We are not the "norm".
     Parker is a sensitive, caring young man. He wears his heart on his sleeve. His emotions are very readable, and for this I am thankful. I am so thankful that both my children feel comfortable coming to me with their concerns. Parker has no mental health issues, but he sees a counsellor twice a month. We made the decision to do this so he could express his fears and frustrations without feeling like our feelings would be hurt. He is a typical 12 year old boy who is going through puberty.....a trip within itself. He hates school, but loves learning( I know, it makes no sense!) He is a walking encyclopedia on guns, fish, food and history. He hasn't decided if he wants to be a gunsmith for the police force or a chef. We told him he has lots of time to figure that out. He has yet to experience his first kiss, and he thinks Tobuscus rocks. He loves music and movies, and is the biggest goofball out there. He can always make us laugh. Parker is learning how to push buttons, much to his avail. He has discovered that his mom is a force not to be recounded, but I know this is all a part of growing up. Overall he is a caring , loving son and brother.

     I have lots to be thankful for, thanks to my Lord. I have witnessed several miracles, and felt the prayers of many people. It still amazes me, the kindness from people. It can make you humble. So here I sit at 12 am in the morning, thinking of all the things I need to do for our trip next week. Pay the house sitter, make sure I pack the right clothes, medications, equipment. Pay the bills for the year, do the paperwork for funding, clean the house, etc...etc....etc. All I can think is THANK YOU LORD for our life, as crazy and tough as it is, I am still so thankful for every breath, every ache, every tear. I am thankful for life.

      Can I get an AMEN?

      So this is the life of a CF family in a glimpse. I am not posting it for sympathy....anyone who knows me, knows I am one tough cookie and I don't like to dwell on the crap. I post this because one simple glimpse of a innocent little girls handmade garland brought back so many memories of our journey to date. I then realized I haven't posted on this blog for almost 2 years. Gee i wonder why?
    I forgot how therapeutic the writing is, I forgot how after typing my worries and my fears subside. It is digital therapy.
    I will warn you at times there will be swearing, and hurt feelings. At times there will be laughter. At times there will be pain. So in the future I promise to post here more often for my friends and family.
   Thank you so much everyone, for the support this year. We are looking forward to our vacation, and the holidays. Most of all we are looking forward to 2015!

God Bless,


Friday, September 28, 2012

New port, new concerns

Annika was admitted on the 24th, and had her IV port put in. She woke from the surgery in a lot of pain. We had to give her morphine to get it under control. Once she slept, and we kept topping her up on tylenol and advil, we managed to keep the pain under control. While we where in London, we got a lot of answers. We found up what was holding up funding for G-tube and supplies. We learned how to do PEP more efficiently, we changed enzymes, and tried some new supplements. We also did a kidney function test, and got our results for our sputum turned in a week ago. Annika is culturing  pseudomonas. This is not a good thing to culture with CF. We are aggressively treating it with antibiotics , both orally and inhaled. It is possible that we may have to do IV as well. This bug would totally explain why her cough has repetitively been returning. She is not contagious to anyone, except those with cf......which is me. My doctor is going to monitor me closely also. Everyone always wonders why having 2 people in the same house with this disease is such a big deal. Well cf people are very giving to each other, we like to share germs. This will not stop me from being the mother I have always been. I will continue to hug her and love her, and care for her. But like in the past we will have to be careful not to share utensils, glasses, etc. I will not let this disease take away love from my daughter! EVER. It is an issue we will have to live with. We will always share bugs, because when Annika is sick, she wants her mom. I will not deny that. I will not take that from her, being infected is a chance I will take for my daughter.
Now that we are home our physio has been bumped up to 2-3 half hour treatments, 2 inhaled Tobi treatments, extra Ventolin, and hyper tonic saline treatments. She has to take it easy for 2 weeks in physical activity to prevent the port for being jarred. David and I will do our best to kept treatment on a schedule. All the while letting her be a normal kid. I have had people ask me, why don't you work. Lets see between both Annika's and my cf, and hospital admissions, and physio, clinics, and oh yeah my other child and husband......I can barely function now, and a job on top of that? Really? I stopped attending births, which I miss desperately, but realize it is just not possible. I truly need to focus on my family and health. It does break my heart to be out of the birth scene though.
Some days it feels like our whole life revolves around cystic fibrosis. So much has been effected by it. Family, friends, marriage, health.......time? Some days I just want to throw the towel in, but than that little chipmunk laugh gives me what I need to get pissed at this disease and fight it tooth and nail till the end. This weekend is going to be a long one for sure. I have a head cold, along with my hubby. Parker is going away to Cub camp, and Annika is recovering. Hopefully her fever goes away, and her cough dies down for Monday and school or I fear she will be admitted for IV drugs. Time will tell. I promise to keep you posted on changes. Much love from a cf mom still hanging out in her pj's at 2:30 in the afternoon!