Thursday, June 14, 2012

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 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 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 is so peaceful. So liberating, so...............who the heck am I fooling, I would take the extra 1/2 hr sleep any 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 . 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 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
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.

Tuesday, June 12, 2012

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!

Sunday, June 03, 2012

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? 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.