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. 

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. 

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.

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 you......lol. 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 great.....you would never know she was sick.....WELL CHECK YOURSELF, perfection takes a lot of work....lol!

      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 mother.....you 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 with.....lol, 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,

Kimberly

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!

Admission to London's Children Hospital

Next weekend will be insane. Friday is the first PA day of the year, and that being said it will be the official start of the weekend. Saturday , Annika has dance in the morning and then we will be joining my brother and sister in law for apple picking at Wagner's. Sunday we will start our week by supporting my cousin and his fiance at The Kidney Foundation , to walk in support for his soon to be step daughter Breanna. She is a young lady who is on the transplant list. Too young to have to deal with transplant already. Sunday night we have our little niece Joelle's fourth birthday. Boy did those 4 years go by really fast. CRAZY! Sunday night, my sister in law is joining me for a long ride to London with Annika to the Children's Hospital. We will stay in Ronald MacDonald House on Sunday night. Monday morning the madness starts.Annika will be admitted for a study on her kidneys . She will have to do nuclear medicine, IVs and some new meds. While we are there over the next few days we will be trying new supplements, enzymes, and will be having a IV port surgically placed. Not sure what we are going to do about this cough she has right now, I am sure they will be giving her some meds via IV while we are there. We will see.
I have struggled with this placement of her IV port. She had one placed 5 years ago, and it lasted over 2 years before she developed a blood infection and it had to be removed. Her last admission we had to stay in hospital for IV meds because after 4 attempts, all picc line insertions failed, her veins collapsed, and would not allow placement. So my biggest fear is another blood infection. When you have a picc line or IV and it gets infected, you pull it and voila, the infection clears up. With an IV port, the port has to be surgically removed.This is my biggest fear. Annika has had thrombosis with her last picc line, and she had a blood infection also. She got really sick. It was a really scary time for us. This is my biggest fear with this IV port. I know I have to put this in God's hands, but nevertheless, I am nervous.
Every month with an IV port, a CCAC nurse will have to come in to our home to do a Heparin flush of the port to keep it functional. My child will be poked at least once a month while she has this, and like a child with diabetes, she will become accustom to it, just like physio and breathing treatments are second nature to her. It still frustrates the hell out of me. It still makes me angry. It still makes me envious of all the parents I know who can just make plans with no thought of medications,and treatments. It is not fair for Annika. It is not fair for Parker. Her bother who has to grow up seeing his sister or mom sick all the time. IT IS NOT FAIR! It is not fair to David, some days he has to be father, mother, friend, and healer! IT IS NOT FAIR!. It is not fair that I can't be the friend I should be. I can't be the wife or mother I should be! I can't be the daughter or sister I should be! It is not fair that Annika might potentially have to feel these frustrations herself in the future! I hate the thought of another admission. I hate the idea of my future cf clinic and surgeon consult in October. You  know I just want to be a normal, boring, everyday housewife and mom! I want my biggest concern to be what I am going to make for dinner, and helping my kids ride a bike. I want to hang out with my friends and help them when they need it. I don't want to be in a one sided friendship.....them giving and me taking, taking taking. This is not the life I envisioned when I said I Do. This was not what I dreamed of growing up. I am freaking 40, and frustrated as all hell. I want my son to love school. I want my daughter to never experience another hospital stay, I want my body to cooperate! GRRRRRRRRRRRRRR! I want so much that just comes natural to others. I see people not take care of their bodies by smoking, and drinking, drugs or poor diet. I see them laugh off what they can do tomorrow. I see parents not hug their children, or play with them. I see strangers caring for their children, just so they can still have their social life( we aren't talking about date night, or weekends away) You know the type I am talking about. I personally know people who don't tuck their kids in at night, and scream at them for missing a goal. REALLY? All I want is my kids to get a good education, fall in love, choose a career they LOVE, and maybe if I am really lucky, a grand kid or two. I would love nothing more than to see my daughter marry( if she chooses) and have a child ( if she chooses) Every dance recital I watch , I cry tears of joy, when there are so many parents that just flippantly say " I will catch the next one!" So UNFAIR! I know this isn't a punishment, I don't believe that stupid saying God Only Gives You What You Can Handle! Bull crap! God doesn't punish his children with pain, suffering, and sickness. This isn't God giving me what I can handle! What God does do , He provides me with the ability to handle what is given to me, he doesn't GIVE me the sorrow. He surrounds me with family, and friends ( that at times I am sure I don't deserve) He surrounds me with those who believe. He blesses me with wonderful, loving children. He has given us gifts to deal with this disease. He has given us love. He has given me modern technology, so that I may vent my frustrations to the cyber world. So that I may write and release. Digital therapy  . I know that he has a plan for us all. I know I have NO say in that plan. I know it doesn't help to feel jealousy, anger, or dismay. I know all these things as his child are wrong, yet I still experience these feelings this week more than ever.

A week post Olympics.....what a ride

This past two weeks have been a whirl wind! The magic that we experienced on our trip abroad is indescribable . I don't even know the words to write to allow you to understand the love we felt . As a family, we totally understand the gift we were given from Proctor and Gamble. It was such an honour to represent Canada at the 2012 Olympics. We wore our colours proudly, and never hesitated replying to questions about our great country we live in. We experienced so much in the time we were gone. Great Britain was so wonderful. the energy, the people, the sights, the food, and the drink. The excitement of the Olympics was everywhere. It was normal to see athletes walk among the people displaying their countries colours proudly, while sporting their athlete badges proudly around their neck. Why wouldn't they wear their colours and ID proudly. They represent their sport for their country, all the while knowing that they may not bring a medal back for their country. I looked at them with awe. I thought here walks someones daughter/son, brother/sister, husband/wife, mother/father. The hope and awe in their eyes at the same attractions we werein awe of, all the time trying not to distract themselves from their main goal, that medal that all our companies promote the winning of, that all the newspapers write about and all the media interviews focus on. What I would love to see is follow up commercials, interviews and newspaper stories about those athletes. About the athletes who managed to have fate on their side and brought home medals, but mostly the athletes that had a medal slip through their hands. We need to remind those athletes all over the world, that we are proud and honoured by their performance. That we understand their disappointment, that we grieve their lost, but ultimately how utterly proud we are of them as a nation. They are our brothers/sisters, mother/fathers,husbands/wives, and daughters/sons. They can not disappoint us, they can not fail. Failure is a part of life, it humbles us. Failure is not what these athletes may experience, it is a twist of fate. A bubble in their timeline, and they need to be reminded that we stand in awe as a nation at their ability just to get this far. Their dedication, and their time and life they sacrificed for our country. WE ARE PROUD OF YOU !
All these "hopefuls" walked the same pavement as my family, they saw the sights just like us. They bleed just like us. They have ups and downs just like us. While Annika and I make sacrifices for our health and body, they make sacrifices for a nation.
We were so honoured to be able to witness this journey for so many. We got to experience the highs and the lows, like so many people glued to their television over the weeks. We just got to experience in person. The buzz, the laughter, the crowds, the host country. What an amazing memory , that I know will never be topped by another.
These coming few weeks I will be going through all the photos of our trip, and I am sure I will be rushed with emotions.I will remember the laughter and the feeling of that time and place. I will remember the London Eye, The Tower of London, The London Aquarium, The Tower Bridge proudly displaying the Olympic rings. I will remember the dinner with good friends, and the walk along the South Bank. All the faces in wax at Madam Tassuad's. The sights and sounds of Great Britain , our mother country. I will remember the feeling I felt about taking a picture with my daughter at Piccadilly Circus, a place my grandmother took a candid snapshot 30 years ago. It felt great to bridge the generation gap. I felt at home in the UK and would love to go back again!

Our friend Herve made our trip to Paris unforgettable! We crammed 5 days of places into two and couldn't have done it without him. He guided us on and off the Metro. He translated for us, in places we surely would have gotten lost. Herve bonded with our crazy kids, even though he didn't have children and was raised an only child. It had to be a culture shock for him. He showed us the beauty of his city. I respect the French for preserving their history instead of knocking it down for a new building. Paris was architecturally amazing. I got to kiss my husband on the top of the Eiffel Tower while our daughter took pictures and grinned like a fool. We got to see the beauty of the Mona Lisa. The towers of Notre Dame where gorgeous, and the Louvre was amazing.The history behind the Arc is amazing. The Paris Aquarium did not disappoint us, and the food was wonderful. Paris will always hold memories for us.
This trip allowed us to experience sights and sounds of countries we could only dream of. Thank you to all those involved in this journey, thank you for this honour.Thank you Lord.

Look out England , here we come

Things have been so crazy since Annika's last admission and her 7 day stay at Club Met. After recovering from my infection, things started on the highway of healing.I think our healing was quicker because we had something to look forward to. there was a silver lining to our suffering. Not only did we get to meet an amazing fighter, Mary Spencer, but we got to plan our trip to London and Paris. Over the last few weeks , as a family we have really been focusing on staying well, getting our 1st home in Harrow ready for sale( which has proven more stressful then needed!)and finalizing our itinerary for our trip. The kids started a countdown. It is officially only 20 days until we board our flight to cross the big pond. Look out UK, the Hasson's are coming. We are looking so forward to so many things. The Olympics, the country, the people, the food, the fun........the hotel....lol. It seems so far away, yet so close. My emotions are all over the place. I pray we all stay healthy till then!

Here I ponder

At 6:20AM this morning I was waking up dogs, kids and husband, preparing them for the day. Little did I know at the time that it clearly was not the usual 7:30AM, and my body wasn't in it to win it.....lol. What made me slow down was I caught a glimpse of the clock on the stove. 6:45AM, I remember thinking " Did the electricity go out last night?" So funny how your brain jumps to the craziest explanations, not the most normal one. I was up over an hour early this morning. I woke up full of aches and pains, I just couldn't sleep anymore. I was hacking up a lung, and my backside was throbbing. Let me explain. Every time I go on Cipro , my body puts up a fight. For the first two days I have aches and pains, vomiting, and my kidneys throb. The first time I experienced this, I thought I was dying. No seriously, I had the shakes, I hurt so bad, and the nausea was the worse. I remember thinking that I was allergic to Cipro. Come to find out from several fellow cysters that this can be a normal reaction. Either you do well on it, or your body fights the healing process. Of course, you all know I am a fighter....lol. So Cipro and me do not agree, ever! But because of my years of infections, my body only has so many drugs that it is not resistant to. I managed to get the clothes ready for the kids, lunches packed, including hot chicken noodle soup, and my morning dose of drugs, along with gravol so they stay in. I lay down again with my morning coffee, and vow to let David and the kids sleep in an extra 5 minutes to make up for the false run. I totally get why parents get up at least 1/2 hour before their families do......it is so peaceful. So liberating, so...............who the heck am I fooling, I would take the extra 1/2 hr sleep any day......lol. I am awake and thinking of my throbbing backside( which I will admit is my most hateful pain besides bowel spasms. It is a pain that is deep inside your back. Heat doesn't help, cool irritates it, you wait for the Motrin to kick in, all the while swallow the hateful spit that sneaks up your throat , threatening a run to the toilet. ) I can handle vomiting, after all I am basically a pro at it. I make vomiting an art. Over the years of bowel blockages I pretty much mastered it. I could vomit, get washed up and flush before anyone even knew what happened. My husband used to use my butt as a dart board for almost 1/2 year when gravol pills and suppositories didn't do the trick. At one time I was on Stemital( anti nausant for cancer patients ) and injectable gravol. Anyone who has had gravol , know that it stings like a son of a pup. There is no easy way to inject it, believe me, we have tried every way....lol . Did you know it can take the body over 2 weeks to totally absorb all gravol IM( injectable) so literally my arse looked like the sand dunes of the Sahara......lol. I can laugh now, but at the time I was ready to take the gravol needle and stab it into my hubbies temple. Don't get me wrong, I love my husband, but that stupid little grin he used to have every time he had that needle in his hand was just wrong.
So I have had many hospitalizations as both a patient and as a patients mother. Both scenarios suck. Being sick and in the hospital away from your family bites the biscuit. But being generally healthy and in the hospital watching your child suffer is the worse! No words describes what you feel. But here I go: Defeat, guilt, hatred, anguish, sympathy,patience, impatience ,hurt, compassion ,frustration ,trapped, relief,concern ,oh and the list goes on and on. You feel so many things both good and bad. You hate some of the feelings you have, and embrace some of the others.
I often write about the good and bad of cf. Well the bad , most would think would be very apparent, but what most don't know is the worst thing about cf is the guilt! The guilt of not being able to heal your child. The guilt of passing on this disease, the guilt of not being able to protect them from their hurt, the guilt of being so strict with treatments, the guilt of your child not having a normal childhood, the guilt of more needles, the guilt of so much. The guilt at times can destroy who you are as a person. It can eat you up.
I often have guilt feelings when I am sick. It is not fair that my children suffer because of my illness. It is not fair that my husband has to be both mom and dad at times. It is not fair that my family suffers from anything to do with cf. The guilt of it all can eat me up. It bubbles, and froths, and breaks your heart. I totally understand when people say guilt is a horrible thing put forth from the devil. It has a way of weaving itself into fathoms of your life. I struggle everyday with the guilt. I have to remind myself that I am doing the best I can. I need help, I need support, my family needs a break. I have to remind myself that I have no control over my illness, but I do have control over how I react to it. There are days I sit and sulk! People ask me "How do you do it?" Really.....really? They are my kids and family, I do it because I have too! DO I WANT TO? NO,NO,NO,NO,NO!!!! I hate, I mean emotionally and physically hate that I have to do it! I HATE IT! I hate everything about cystic fibrosis! I HATE THIS DISEASE! I hate that last night my son came to me with tears in his eyes and said he was so afraid of losing me? Does that seem fair? Does that seem right? My 9 year old son is afraid of growing up without his mom. That is not fair, and I hate it!My daughter seems to embrace my sickness. I think because she has a first person understanding of it. My son and husband really don't get it sometimes. I wonder sometimes if it is the male gene. There are times when I am puking and been in bed all day and my husband will ask, what's for dinner. Or will say I am going uptown, and he won't be back for hours. I know it is his way of feeling normal, but it truly sucks. I want to be cared for, I want to be nurtured, I want to have soup served to me in bed. The same way I serve them when they are sick. My husband and son expect me to be superwoman, and I see the disappointment in their eyes when I can't. I have found myself blowing up at them stating " Let me wipe the vomit off my cheek, and make you dinner?" I find myself yelling at my husband , reminding him how selfish he can be. I find myself being resentful to him for wanting a healthy wife, because I am truly not sure if I will ever be able to give that to him. I hate that my son often mimics his demands, because he is just doing what he sees. Is it fair to be mad at my husband? Is it too much to ask for him to take care of the kids without a eye roll? Now it sounds like I am making him out to be a ass, but I have to remind myself that he truly didn't sign up for this. He married a energetic, vivacious women. A woman that let nothing stop her. He married a woman you never gave up, and who was active and happy. He married a woman who could multi task. Now he has half that woman. Dave has just lost his job two weeks ago, and the stress of things is crazy. We are putting our house on Secord up for sale, he is looking for a job, the stress of not providing an income is killing him. Every time the bank account goes into overdraft, I see his hope dwindle away.Every time we pay over $50for a drug for me, I see the frustration in his eyes. Remarking to me how expensive a drug is, is like saying" How dare you get sick, can\t you just stay healthy?"  I see him struggle with so many things. It is not fair that he can't be a regular husband and father . He should be able to work and enjoy his family. My fear is often losing him to a heart attack, and then we will be alone. I know a part of him wants to run away......far far away. Any person would want to run. Who wants a sick kid and wife? I think it is his guilt that keeps him around sometimes, but not without its price. I think our love struggles so much with this disease. I think our marriage just floats at times. I look at other marriages at times and feel envy! I often think" You're getting a divorce, why ? Because you can't agree on money?" Really it seem so trivial. Try throwing in sickness, pain and medial bills in there and see how things work for you. I can't remember the last time Dave and I went away together, or went on a date night. I can't remember the last time we got to work on our marriage. I honestly can't remember when were last a couple. It is not fair that my husband has to be everything to everyone. It is not fair! It is not fair that my children have to care for me at times. It is not fair! It is not fair that we are cheated of so many things. I am cheated of hearing my child cough, and not thinking the worse! We are cheated of being spontaneous, and just packing things up and going somewhere on a whim. We are cheated of normal friendships. Our friends have to be patient and understanding, and know that they could take the back burner at a moments notice. We are cheated of a regular family life. You know the type when you can just pop some popcorn and watch a movie together? Nope , not us. Popcorn means enzymes. Popcorn means thought, popcorn means you may be able to take a certain medication on a full stomach, or is it an empty stomach? Everything in our life revolves around cystic fibrosis. EVERYTHING.
Simple things that people take for granted are affected by this disease. They really should put a psych warning on cf, because this disease affects the brain and your way of thinking so much.
The truth is I love my husband. I love that he can take both kids on day trip. I love the fact that he will care for them without fear. I love that he tries his best to substitute for me when I am ill. Even though the kids give him hell and often say " Mommy doesn't do it like that" It has to be defeating to him when he hears that. I love that he hasn't left us. I love that he has taken responsibility for his kids. I hate that I feel sometimes that isn't enough. I hate that when Annika gets sick he drops everything, but when I get sick he could care less. I hate that, I hate that!
I know that our marriage will struggle, and have its ups and downs. I know that we go through more than 90% of marriages. I know that the love we had when we said " I DO" will get us through. Who knows maybe one day we will renew our vows. Wouldn't that be a great adventure. Wouldn't it be nice to know he said I do , knowing EVERYTHING, sickness and in health till death do us part. I think that would be the greatest gift he could give me.....lol.
It is totally unfair to the spouse to have to care for them in sickness. Some of your reading this may think. He is your husband, he said the words in his vows. I will honestly say no one really considers those vows when they say them. NO ONE! He is only human, and has the right to feel cheated. I feel cheated! Tomorrow is another day, and another struggle. I am blessed to have medication, I am blessed to have support. I am blessed to have faith. I know it could always be worse! I know I should be totally thankful for everything I have. I know all this. I know I should not have envy, or jealousy. I am not proud of those feelings. I know I should just..........................................
Tomorrow is a new day, another day of healing physically and emotionally.

Reality with cystic fibrosis

Well I just got answers from my nurse in London. I went on Prednisone for a really bad outbreak of poison ivy. I have been on this for 7 days.The doctor did what he thought was best, but since he wasn't my regular family doctor ( I have a family doctor that I can never get in to see), I had visited a walk in clinic, he never thought to ask me if I had a cough, or had any other chest symptoms. Well I had no idea that if you have a brewing chest infection and go on Prednisone, it can do some damage and make things worse. This is the outcome at hand.The last few days I have been feeling run down. I thought it was just because I was working hard on the other house, the heat, the poison ivy outbreak, and the emotional ups and downs I have been experiencing because of this great opportunity with the Downy contest. My body was trying to tell me to sit down, shut up and listen. Well I woke up from a nap today, and I was listening. It literally felt like some animal was laying on my chest. I am coughing up sputum and I have a fever of 102 degrees. My body is slapping me in the side of the head with a brick! After a conversation with my wonderful nurse and my doctor, they are putting me on Cipro for 14 days. Cipro always makes me puke, so gravol will be my best buddy for a while. I am to slow down and do some bed rest she said, and up my chest therapy, my Ventolin, my symbicort, and if I am not showing signs of improvement by Friday I am to call her ASAP. So why am I writing about this. I am not venting, I am not bitching, I am not even angry. This is cf reality. This is our life. One day we are all smiles and full of piss and vinegar, and the next we feel like the victim of a hit and run. This is what I fear everyday with this disease. I can't cook dinner for my family, I can't hug them and squeeze them because it hurts my chest to do so, I can't be full of energy and be happy about the day they had, I can't be the MOM I WANT TO BE! And that is what is not fair about this disease. It is not that it slowly takes our breath away, its that it slowly takes our control away, and that is what is never fair about this disease!I feel cheated at times. I feel defeated. I feel sick. Cf reality sucks!

Just Another Day

 I always smile when I hear that familiar phrase " It's Just Another Day". I often am reminded how easy that phrase rolls off so many peoples lips. " Just another day" , if you really put thought into those simple words you will realize that in reality those few words are not so simple. It takes 24 hours, a sunrise and a sunset, the lunar phase in 24 hours, tides rising and lowering, weather fluctuating around the world, people breathing in and out, 1440 minutes, or 86400 seconds in a day.
 So many things can happened in a 24 hour time span. People are being born and people are exhaling their last breath. Some are falling in love, others are having their heart broken. I guess my point is, it is never "Just another Day!" Every morning it is the hope of seeing my children smile that pushes me out of bed. The hope of a giggle or full belly laughter that  just gets my heart beating. There is nothing better than your child cracking a joke, that has taken no thought on their part, but actually makes you laugh all day long. Those jokes that get mentioned at the dinner table with a mouth full of food. We all have found memories of laughing milk or coke out our nose. To our family, there is never " Just another day!" Each day in our household is a true blessing, and is never the same. Yes there may be familiar points each day in and out, but everyday is totally different. Today , Annika woke with a horrible cough.....and my mom role went into action. I made a call to her cf clinic right away. We learned a long time ago to never just ride it out with Annika,  so antibiotics here we come. So the simple phrase does not apply here. Although I will admit I like to say it out loud sometimes when people ask me how things are, just so I can appear normal. I take a deep breath in and exhale long and slow" Just Another Day" and then I crack a little smile, one small enough that no one would notice, because their normal is so different from ours.
 This blog may be a very small insight to our daily lives. While in no way am I justifying my mood swings at time, or my goofiness, or my crazy attitude at life in general, but walking a day in our shoes could give most a general ideal why I am the way I am. In a famous quote of a very strong sailor" I am what I am, and that's all that I am" I love Popeye the Sailor man! Toot Toot!

Miracles in the familiar faces

Everyone looks for miracles in famous places. the Vatican, church, the crying wall.....I could keep listing all the amazing places that offer support in our faith and beliefs. I could remind all the people who venture to read this blog, that miracles happen everyday, but I really don't want to push my faith on anyone. Your journey in faith has to be your own, no one can convince you of unconditional love. My journey in faith began as a teenager, I wondered how could a father love their children unconditionally and forgive them of their sins, no matter the sin. Then I had my own children, and instantly I understood. Nothing my child could do, no crime, no offence , could break my love for them. Yes they will greatly disappoint me at times. Yes they will one day ask for my support, than the next deny my word. Yes they will profess their love for me in private, but deny my love to friends in public. As a parent we understand this, we except this. So why is it so hard to understand that our creator can do the same.
Don't get me wrong, I am a normal child of God. I do all the above, just as my children do to me......but as I get older I realize that his love is unbreakable. He loves me, and the proof is in the pudding.
So many times, people ask me....How can you be so strong, how much more can you take? How do you do it? Don't you feel like you have been cursed? Why does God allow illness in children, are they not innocent?
Wow......so many questions, and I will never have the right answers for some. I do what I do , because as a parent I have no other choice. I guess until you are a parent, it is a really hard concept to understand. As an adult, I made the decision to have children. I wanted them, I prayed for them, I ached for them. Never once did I pray for God to send me only healthy children. I prayed for children. Some might say that stupidity was involved....I should have thought of my prayers before I said them. I reply, no I had faith that whatever child God blessed me with, that He would also give me the ability to care for them.
Every hospitalization, every needle, every test, every infection brought forth this reality of faith. Should I hate God for putting my child in this situation, after all she is so innocent. Were my sins so great , that this is my punishment? NO! What makes me, and mine so special that we shouldn't experience trials and tribulations. Do we not learn from our errors, do we not learn from experiences, do we not learn from good and bad. The answer is yes! My children are beautiful! My children are gifts! My children are his! My children are amazing , loving  beings that enlighten my faith everyday.
Never once has my daughter asked why has God done this to me! No instead she prays for healing. She prays for peace, she prays for everything else a child of faith prays for. She prays for a trip aboard, she prays for food for the hungry, and she prays for a cure for cystic fibrosis. She doesn't feel forsaken, nor do I . I feel blessed by the miracles that surround me. Some might ask....what miracles surround you? Well people open your eyes and look around you. Do you not see the sun rise or set, or do you choose to sleep late, and ignore the beauty? Do you not feel the wind whip around you, or do you close your windows and relish the four walls that surround you. Do you not hear the laughter of little ones, or do you choose to complain of the noise they make. So many miracles, so little thought directed at them. Life itself.....10 fingers, ten toes, created by a single act of love and passion? Breathing, a miracle so many take for granted. Life.....a miracle that others just assume they are entitled too. I am surrounded by miracles in everyday faces....familiar faces. My children, my husband, my family and friends. I am reminded of miracles with each smile, or fallen tear. I am blessed to be surrounded by such amazing miracles everyday...... how do you see it miracles, or just something you are a part of? I choose something bigger and better! I choose GOD.

All about sickness?

I just got a slap in the face from an online "friend" today. Based on a comment I made to her, and a smart remark from one of her online "Psych grad" friends. I am apparently all about sickness. Really? Me.....no!!!!! Would it have to do with the 34 admissions Annika and I have had over the last 4 years ( that's averaging 8.5 admissions a year) not to include the cystic fibrosis clinics for Annika and myself every 3 months ( and these are never on the same day of course) or the repeat PFT testing, blood, and xrays that arise as outpatient because of these admissions. Wonder why I would be all about sickness? I just can figure that out.......lol.
You know  any of my friends and family who see me and talk to me all the time , knows that that comment is full of SHIT! As a friend and family member I am always putting others first. I am always helping and supporting when I can. As a friend , I also expect alot in return. Some may think I can be demanding, while others may think I am too giving.
Look as I see it, I just try my best. I am human, and I make errors......Many errors over the years. But for someone who barely knows me to state a shitty remark like that, well is not much of a psych grad. Can't wait to see the counselling sessions they will be in charge of.
My FACE BOOK PAGE WAS CREATED TO UPDATE MY FAMILY AND FRIENDS AROUND THE WORLD ABOUT ANNIKA'S AND MY HEALTH
So if you don't want to read about our health issues, take us off your list. I didn't create an account to socialize, I have face to face friends to do that. My Face book account is solely for updates about our journey with cystic fibrosis. If that is too heavy for you, and our reality sucks for you? Then it is easy, take me off your list.
Often this blog is where I can go to vent. I can swear, I can bitch, I can talk about my frustrations with this disease. This disease, that right now has the upper hand ( but not forever, just right now) and the last thing I have tolerance for is a double standard. Don't bitch an complain about other cf parents, when you can't take the crap yourself!
Anyone who knows me , knows I have no tolerance for he said /she said crap. So when you bring someone into a discussion that doesn't even know me, then I get pissed. I would love to give a few people some schooling on dealing with illness.....really all about sickness. With what our family has gone through in the last year I should be in a FUCKING MENTAL WARD!

Can I get an AMEN.....errr I mean a PICC line.

Well it has been going on 12 weeks that I have had a cough. Four rounds of antibiotics, and it still hurts to breathe, and I am coughing so bad that I am puking up anything I eat or drink. I have bumped up physio, I am doing nebs and inhaled meds, I am resting, and patiently waiting for Thursday to come. I get a picc line put in on Thursday. Today I can't keep much in due to the coughing. I have been coughing so bad that I actually missed seeing my cat, and tripped over him and fell on my shoulder, which is now KILLING ME! I am debating going into the ER just to get hydrated and then coming home. So very frustrating. I am afraid if I go into the hospital, that they may want to keep me. It hurts to breath, it hurts to move my arm and life is just sucking big time right now. So that's the skinny!

A gumble and an ache

Well that was a hell of a two week journey. Three different antibiotics in four weeks. Pain killers and injectable gravol where a necessary commodity in my household. Three ER visits were more than enough! The kids counted the holes on my arms and hands after the last visit and it totalled 13 puncture wounds~
I often wonder when this insanity will get any better. During the illness, time travels so fast, I think because I sleep through days at a time. I know during my illness outbreaks that time travels so slowly for everyone else. David has to take on extra responsibilities. My parents and friends step up to the plate. My kids pray and wish for their mom back. There is nothing normal about a 6 year old wiping the brow of their mother, after she finishing hugging the toilet for an hour. There is nothing fair about the statement at all! My husband never signed up for this, nor did I. I really don't think when young people marry, that they really understand the importance of their vows. I am not the energetic, vivacious young lady my husband fell in love with. I am sure I never will be again. I always hate the week after the illness. You know the week where most are thankful for feeling better. While I am glad I am no longer puking every five minutes, and the pain is gone. I am also thankful that I don't have to nap everyday right now, I can't help but have this overwhelming feeling of guilt. A guilt that I know is foolish, but nevertheless, I have guilt. I have guilt for still relying on my parents to care for me, in my 40th year of life, I have guilt that I am not the mother my children need, I have guilt that I am a needy friend, I have guilt that I am not the life partner my husband needs. I have guilt. Sometimes I wonder if this guilt will ever get better. Don't get me wrong, I have excepted the fact that I have cf, but at times of sickness, I have to remind myself that cf does not have me. Period.
So this week is a week of reflection, or catching up, and of rest. This week is the first of healing, and moving forward once again. This week is the first week of the rest of my life.

Come visiting my cousin visiting and an I get a unexpected ER trip

Well I came up to London on Wednesday with plans to stay over night and to be here to support my mom in her shoulder surgery, and to also support my cousin and his extended family during a really trying time. Well I should have known how this trip would lay out. My mother's surgery was cancelled, for reasons unknown. I still made the trek to support my little buddy Breanna. I am chairing a fundraiser for her and her family. Feel free to check out her website: www.breannasbattle.weebly.com.
Well the visit had been going generally well. We were getting a lot of ideas and work completed. I stayed in the families room at Ronald McDonald's House. The construction to the house is completed , and it turned out beautiful! When I woke up this morning I felt like a train hit me....SIDEWAYS! I called my CF nurse, and she told me the doctor wanted me in the ER. I was struggling to take a deep breath because I was in abdominal pain.
My cousin was going into surgery, and I really struggle with the decision to got to the ER.
Once I registered in the ER , I left them my cell phone number so that they could call me when a bed was available. They were wonderful about this, knowing my cousin was going into surgery.
Once I was seen by a doctor, after 13 attempts, they got blood and an IV started. Urine was done, an xray was taken, they hydrated me and gave me something for the pain. The results of the testing came back that I had a severe kidney infection. Fun stuff! The doctor discharged me with a new antibiotic ( the third in 2 months) and some pain meds until the antibiotics did their job.
My cousin was so supportive and loving. Luckily, I was able to stay the night tonight again. I have been vomiting, and still feel like crap. I can't take any pain meds for the car ride home tomorrow.
The guilt I am feeling because I got sick, and took some of the attention from Bree is horrible. I hope my cousins can forgive me. I really didn't plan an ER visit during this trip. Honest! Let's hope tomorrow both Bree and I are feeling better.

Just another day

Sometimes I just have to shake my head and think " Just another day?" Often, I think people around me take for granted the gift of good health. You know that mythical thing our family struggles with...lol. We have all been passing around a cold bug for the last few weeks...back and forth, round and round. Parker, Dave, Mom and dad all processed it with a stuffed up nose and a few yucky days. Mine went right to my chest, as you very well know if you read this blog. Annika had been dealing with this bug for about 10 days now, just complaining of a snotty nose, nothing really coming of it, until last night. I should have know that something was coming of it after doing her saline nasal rinse, she complained of a sore ear. That night a fever developed and she was up half the night with a earache. This morning , still a low grade fever and her ear is killing her. I kept her home from school, and put a call into her cf clinic. We both made pinkie swears to stay out of the hospital for the holidays. Christmas is only days away....the countdown has begun. Let's pray her doctor calls something in to do the trick! Why would today be any different from any other day....after all it is just another day!

A fire and a good blanket

If you ever had a chance to sit and watch a roaring fire with a warm blanket on your lap, I am sure you can agree there is nothing like it. What makes it even better is when you are chilled to the bone and not feeling up to snuff. The flames have a calming effect, and the heat is a welcomed band aid.
I woke up today, for the first time in weeks , with the weight off my chest. I actually feel I can take a deep breath again. It is so refreshing, and honestly long over due. The medications are finally kicking in, I have been doing nothing but resting. Which if anyone knows me, is not an easy feat! But I have listened to my doctor, my family, my friends, and nurse Annika. Today is the first day I have been out of my pajamas, and will admit that I was not smelling so good, so a shower was a treat today. I did a load of laundry, packed my son's bag for cubs winter camp, and just snuggled with my mutts. I received several emails, a few phone calls, two visits, one special delivery from one beautiful woman ( wink, you know who you are!) I just got surprised from another friend. Her children are in a home school group, and a cute Christmas card came hand  signed by all the kids,delivered with some hand made truffles. Thank you madam, and tell your kids thanks for bringing it over. I truly value all the love and concern I have experienced over the last few days. God is grand! Thank you Lord for the support you offer, and for your gracious healing hands. Thank you for warm fires, fuzzy blankets and loving mutts! I could do without the sloppy kisses that come with them though. Amen.

A gliche in the silver lining

Yesterday I received the lowest, or the lowest blows. We are talking gut wrenching, heart breaking reality. I was given the news yesterday that I had cystic fibrosis. Now you may be wondering " Am I missing something here, ? " Yes, six years ago I sat in front of one of the leading doctor's in cystic fibrosis care in Canada, while she explained to me" Genetically you have cystic fibrosis, but from a medical stand point, you are symptom free, and we will only monitor your care once a year for statistical purposes. Just for the benefit of clearing things up, to this date my lung function has been amazing, I had full pancreatic function, and besides having some bowel issues ( which only one doctor would admit it was a complication of cystic fibrosis) I was symptom free.So I had cf, but I didn't have cf. Year after year I would go to my cf clinic. I would do my bone density scan, fecal studies, blood work, x-rays, and my pulmonary function tests. All would come back wonderfully, with averages above average even for a "regular" woman of my age. I turned 39 this year, and my body started to fight me in so many functions. I noticed colds hung on longer, my bowels were too frequent ( 4-6 a day) and my belly pain was horrible. I started to pay more attention to my stomach ( besides the fact that it forced me to notice with the worshipping of the porcelain queen) I pretty well chalked this up to my body healing from gallbladder surgery and just being run down. At Annika's appointment last week I had advised the doctors to take extra care in washing their hands, as I have been fighting a cold for about 4 weeks. The whole family had it, and I joked that I am sure Annika will come down with something soon.
Well after all my yearly tests at London, I was ushered into a clinic room, the norm for my yearly clinic. The difference was I was feeling like crap. I couldn't get warm, and I just felt generally weak. I couldn't believe how this cold got the better of me. It was getting really frustrating from my point of view, and I voiced my concern to my nurse. Well after a kind, but stern tongue lashing, I was advised that from blood, xrays and PFT's, the evidence was there that I had a chest infection. I was also told my pancreatic function was gone, and this was the explanation for my bowel issues.
Do you know what a brick to the side of the head feels like.....I sure as hell do! My new doctor came in. A very kind gentleman that stated he understood that I have been told alot in the last few minutes, but from his point of view, I was full blow cystic fibrosis status......WHAT, WHAT, WHAT????? He wanted me to start seeing him every three months. The dietitian and the physiotherapist would be in to go over my care. They wanted a glucose tolerance test, because my blood showed CFRD. My first reaction to this was shock! All these years, and all the  remarks from doctors stating this was just a formality, I wish all my cf patients were as easy to care for as you. So after a 5 hour appointment and a bag full of new prescriptions , I made the journey home to process everything with my family.
All these years, under the belief that I was one of the lucky ones. I was untouched from this silent stranger cf! I HATE CF! I HATE CF! I HATE CF!
All these years I have fought for my daughter's cure, my daughter's control, my daughter's future. Never knowing I was fighting for my own.
All these years of misleading me, of no treatment, of no physio!
So now my lung function is half of what it was 6 years ago. Now my pancreas doesn't work, now I have to do physio everyday like my child. I am sure there will be many that will read this and think  " Welcome to my world!" but what they don't understand is I was told by many cf doctors, your mutation in little lung problems and full pancreatic function.
WTF?
I asked my doctor......why was I told this? Why was I given false information? Why?
I had access to a vest for the last 6 years, yet my old cf doctor told me there was no need. Proof was in the history....I went 33 years without knowing I had cf. Why should I change anything now.
The doctor replied" Your mutations are in the top 32 mutations tested for. From our research , less that .08% of people with cf have my genetic makeup. So that limits the doctors and their resources. Of those .08% of the cf population, I am one of the oldest with this makeup from what he can see. Most are infants or teenagers. Of all those with my mutation, none are showing any symptoms of cf. So I guess in a way I am a matriarch....lol. Oh lucky me! He then went on to say it is possible with these mutations, that cf doesn't present itself until a person's more mature years. I guess a way of saying I am old!
So basically he will use my information , to place in the cf data banks, so future cf patients with my mutation will receive preventative care. His fear is that in 6 years my lung function has decreased 50%, he doesn't want that trend to continue on. He doesn't want me on the transplant list in 6 years.
Annika was diagnosed, I went through all these. I know next comes depression, mourning what once was. But the best of all after all that comes the fight. The fight to prove all statistics wrong! This cf messed with the wrong bitch!
To all reading this, give me some time to process this, give my family time to process this. Thanks for your support. So now my silver lining is gone. Truth be told, I always had a thing for gold anyways~

A visit to Children's Hospital

This past week we just had a cystic fibrosis clinic. I always dread these clinics. Often I am reminded of my failures. My failure to fatten my child. My failure to be there as a doting mom, because often my health is very poor. My failure to fix my child's every need. Even though my head tells me these failures are out of my control, my heart still aches when she fails to meet the normal requirements of her health. I know I have no control over the infections she gets, I do everything to avoid them. Keep a clean house, stock my fridge with fresh foods, keep my children active, and give them the appropriate medications and vitamins. Still a part of me holds myself liable for a poor PFT, or for a virus, or poor weight gain. The mom in me tells my head.....hook her up more often to her G-tube, do more physio, make better , nutritious food. I beat myself up for all her bodily failures. I cringe in the parking lot every cf clinic. This clinic we went and did her PFT's first. Last visit she blew an 80 FEV, this time she blew an average of 100.....100%.....perfection. Her xrays were spot on, and her blood was great. Her vitamin levels where right on. We are just waiting for her sputum results. For the first time in a long time, I felt good leaving her clinic. I half expected it to be a joke, I truly was waiting for them to chase us into the parking garage to tell us they mixed up the test results. But here we are after a nice, quiet weekend, still no call from London. Still functioning . Still relishing in the results. Annika's lung function is amazing, all signs of infection in her blood are gone, she grew 2 cm and gained 3 lbs since her last visit in August. God is good.