Tuesday 23 December 2014

My cup overfloweth!

There are 3 days a year that all of my Christmas lights are on 24/7 and that starts today!

As I am puttering around my house today making final preparations I feel such spirit and joy. It makes me wonder where does that come from and why is it so powerful at Christmas. Then I realized it really is simply the human spirit. We have it all year, every day, we can't avoid it, it's within us all the time. Really it's how we choose to use it that makes Christmas more special.

The Christmas season does not have the power in itself to eliminate, anger, hatred, crime, sadness and struggle. We have to choose to eliminate those things from our days. If we did that all year would we feel this joyous every day? I think its possible.

I will encounter people and situations that would normally have the potential to anger me this Christmas but I choose not to feel it. I choose to kill them with kindness and not in a spiteful way but in the true sense that I just choose not to feel those negative emotions and treat everyone with love, respect, acceptance and joy as each and every individual deserves.

I know that Christmas spirit comes from the blessing of having Jesus born to us on that day. It comes from the feeling of being so blessed to have freedom and spirit abounding. I know that Jesus and Our Father exist because I feel the inexplicable joy that fills me. Its spiritual. Its strength can bring you to tears in joy. It strength also offers you the opportunity to feel compassion for others and maybe allow yourself that moment of sadness knowing that some are struggling this year and someday it may be you. How blessed are we to be enjoying this season? Some year we will each have a struggle or we may have had those in past years and others were there for us in mind, body and/or spirit.

This year I have been very blessed to have the resources, energy and health to help others. I need for nothing under the tree. I asked for a new robe, thats all I could think of that I needed. My Christmas wish is that everyone take the opportunity to be still and feel the spirit that fills us, use it well, spend your days blessing others, sharing joy, smiling and being friendly to everyone, even people you would not include in your life the rest of the year.

I know its not going to happen internationally but maybe a few people reading this will be inspired to choose only joy, compassion and love this year. To each of you that do I say thank you. I hope you also feel the contagiousness of it like I have been blessed to feel and make every effort possible to feel that spirit all year long. Thats my goal for 2015. To make more effort to use my human spirit wisely, not just at Christmas. Its in us all year long.

Merry Christmas everyone. Lots of love from the Swartz-Biscaro-Harry family!


Thursday 18 December 2014

Christmas as a child!

I remember Christmases as a child.

I remember Mom baking chocolate macaroons, sugar cookies, pies and dad doing the grocery shopping once a year.

I remember sitting in my bedroom window on a Christmas Eve that seemed so solemn in my home when my dad drove in the driveway and announced to my mom that he had gotten paid and they were going to town.

I remember the next day having an exciting Christmas morning opening stockings and gifts and having a delicious meal not realizing that if he had not been paid the day before, Christmas may not have been.

I remember asking Santa for a Cabbage Patch Doll every year for about 3 years because at my school unless you had one you were not invited to the girls birthday parties, never finding it under the tree and wondering why.

I remember one year finding a lamp decorated with Cabbage Patch kid stickers, I still have the lamp.

I remember the year Santa did bring my Cabbage Patch Kid and I knew it by the shape of the box under the tree, I ran to show my parents in their bed and the look of excitement for my joy was emanating from them.

I remember going for a walk alone on Christmas day as a child and standing under a big pine tree branch and shaking the snow off of it all over my head, feeling the spirit glowing inside me.

I remember going to my Grandmas farm for Christmas, the smells, the people, the food and her tree.

I remember decorating our tree every year with my brothers and sister, the special bulbs we had, one that I am proud to put on my own tree every year.

I remember December 1st, the advent calendars came out and we wanted so bad to eat them all but mom made us wait day by day till Santa came.

I remember laying in bed Christmas Eve with my sister and giggling, unable to sleep in the excitement waiting for Santa to come, determined this year we will catch him coming down the chimney.

I remember making molasses taffy with mom and dad and braiding it hung from the nails that dad also used to hang his beaver castors when trapping.

I remember Santa visiting us at the request of Bill Kennedy one year with a whole sack of goodies, he had great glasses.

I remember the Lions Club delivering a turkey basket every year.

I remember the neighbours delivering trays of sweets to our door.

I remember the Christmas cards hung all around the archway into the kitchen.

I remember going to the ice rink that my brothers had shovelled in front of the house to skate and use our new toys.

I remember Christmas concerts with Santa's visit and going home with a brown paper bag of hard candy.

I remember family, friends, warmth, food, sparkle, joy and the overwhelming feeling that filled my heart with love and the spirit of Christmas.

I remember Christmases as a child.

Monday 1 December 2014

Humour in Hysterectomy

After 10 years of treatments including surgeries, prescriptions, ultrasounds, hospitalizations my gynaecologist said "You're 40, it's time" We booked the hysterectomy. I was more nervous about this procedure than I thought I would be. I have had two Caesarean section births in the last 18 years and the memories of those made me a bit skeptical. They could not do a vaginal hysterectomy because of my previous c sections so now the scar that had gotten older and more ugly also has a bit of a pouch hanging over it and it was to be sliced open again......for the third time...through the stomach muscles.  I did tell the surgeon that she could feel free to tidy up the scar and tuck any fat or pouches away, basically shamefully begged her to give me a flat tummy again. Why did I wake up and actually look to see if she had done that? I can't even see the incision through the swelling, which turns out to be a bonus...who wants to see your belly stapled together?

So the big day arose, I was all packed and ready to go. Mike and I got up at 5 am to drive to Orillia in snow squalls to get there in time for my 7:30 arrival and prep for surgery. We did arrive right on time and the nurses seemed very cheerful to see me. They said "today is your lucky day, the lady ahead of you didn't show up so you are first in line for surgery this morning. We are going to get you ready quickly and get you right in!' They were all smiling. Lucky day? Thats when I realized that I need to start watching for the humour in this experience, clearly my day started with humour......strangely I did start to see the other lady's no show as luck for me.

I was quickly prepped, given a gown open at the back and robe open at the front, elf boots and a pretty hat to wear. I got to sit in a waiting room with my husband....and many other people....looking like that for a short time before they took me in to do my IV and take me to see the surgeon and anesthetist. While the nurse was going through my file and pre-op instructions she multitasked by chatting with Mike about the weather and giving him directions to places he needed to go while I was in surgery. Excuse me? Here I am, hello? I am about to be placed under anesthetic, have a machine breathe for me, have a spinal tap, frozen from the waist down, twisted into positions that nobody could do awake, have my guts sliced open and organs that make me female removed and we are worried about the weather and directions? This is what I was humorously thinking while they were chatting, I swear I was not offended, just found it humorous because we ignore all the seriousness of situations to avoid stress. When people have surgeries we talk about how to prepare and how to recover, we share what the doctor shares about the procedure and assume all will be well. On the inside, we are nervous, we are thinking the worst.

My husband kissed me before I walked into the operating area and said he would see me when I woke. We both knew we were thinking "if you wake" and I had a giggle about it on my long walk which was only about 25 steps but seemed like it was slow motion and my life was flashing before my eyes.

The surgeon came to see me and confirm what we were doing. She said "we are just going to jump in grab your uterus, left tube and ovary and close you up" Sure, just like that! I agree, consent signed.

The anesthetist explains how he will give me spinal morphine before surgery, then strap me down, give me anesthetic through IV with oxygen and then insert a breathing tube and that I will not be breathing on my own. Sure, just like that, consent signed.

I walk into the OR and they get me to sit on the bed and bend forward to do the spinal, they mark it and say slight pinch! (I have had this before so I knew better and was prepared for more than slight pinch) ZAP! right down my right leg....ELECTRICITY! I say "ouch", try again, ZAP, ELECTRICITY SAME LEG, one more time should do it, ZAP THIRD TIME NOT THE CHARM. HMMMMM he says, one more and then we abort, ZAP LEFT LEG and QUICK ZAP LEFT BUM CHEEK! There we got it! "Now that was tough to get in" He says. "If you get a spinal headache which is rare but may happen given the circumstance just let us know asap and we can fix it with an epidural" HA, if i get a spinal headache, which I have also had before I will take tylenol thanks!

They lay me down, strap me down and give me oxygen and say breathe. My last thought was here we go!

The next 2 and a half hours were spent in surgery and then an hour in recovery. I woke feeling like I needed to cough really badly and very disoriented, very dizzy, very stoned. I was in an out of sleep. I remember them saying they will grab Mike and move me to my room. Again dozing in and out, in and out, don't remember a lot of the rest of that day. I do remember the morphine drip that I got to push whenever I wanted and boy did I use it! I remember Mike watching tv and trying to get me to drink my beef broth. I felt like I had to pee but I had a catheter that drained my bladder so I didn't need to get up. Mike went home and I slept between nurses coming and checking my vitals, my urine output and giving me heparin, anti-inflammatory and tylenol. I can rate my faves, the morphine and the anti-inflammatory were the best.

The night nurse came in about the same time as my room mate. She (the room mate) was a 40 year old woman who had the same surgery as me just not through the abdomen. The night nurse started her shift by mixing us up. She did all of our vitals, meds etc and then came to tell me that in the morning we would get up and go to the bathroom to take out my catheter and remove all of my packing. I was awake enough to wonder what that meant so I asked " what packing?" she said there would be about 7 feet of packing in my private area  which I thought was weird and I couldn't feel anything but assumed she knew what she was talking about and left it. Then she went to my neighbour and told her that she needed to check her incision. OK now I knew she had us mixed up. I had the incision, she had the packing. My neighbour did not catch on and let her look. The nurse quickly ran over to me and checked my belly and then went on about an hour of fixing paperwork and files to fix her mistake. Good thing we had basically the same treatments and meds. She made sure to check our arm bands after that. And I truly think she thought I was dozen enough to not notice and I didn't mention anything. Could have been disastrous but was kind of funny watching her run around acting like nothing happened. When it was time for my anti-inflammatory she brought it in oral form and I asked her to change it to suppository so it wouldn't be hard on my tummy and work faster. She reluctantly agreed and came back 2.5 hrs later with it when I couldn't stand the pressure anymore. Needless to say I was happy to see my morning nurse come back.

The first thing the morning nurse asks is "have you passed gas?" See if you pass gas you get a regular diet. I had not but i fibbed and got a regular diet anyway because I knew it was coming, it had been rolling around all night. She got me up to take out my catheter and sure enough the gas starts moving. I don't remember farting ever feeling so darn good in my life. Once it started it didn't want to stop, in fact it still doesn't want to stop. They pump you full of gas in surgery so it has to come out somehow. This was actually the funniest part, see Mike and I have had an anti fart in bed agreement since we met. We just don't fart in bed together. Yes we actually get up and leave the room or wait until the other has left the room and hope it isn't noticeable when they return. Well, all bets are off now. I warned him right off the hop when he arrived on Saturday in my room. "I can't get up to fart elsewhere quickly and its a bit of a chore to get it out without using stomach muscles so I just have to let it go when I have the chance....that includes in bed" He just giggled with complete ignorance to how much gas there is to be removed. Lets just say I shocked him. He was high fiving me like he would his buddies in the locker room. It also broke the proverbial ice and he found it a freebie for him to blast me in bed too! Oh well, now that the 10 yr seal is broken!

When the doctor came in and discharged me we were happy to go home. The nurse came in and offered pain meds before I left and again I asked for the suppository that was due. As she was giving it to me I giggled and thought if I ever have surgery again I am going to add that to a one page profile under how to support me - i prefer to get pain meds through suppository! Who would think in your every day life that you would ever say something like that?

Mike also has never had a major surgery so is asking lots of questions about how to help etc. He has been fantastic. When I said I would be sleeping on the couch he was not happy, he offered to help me to bed and make sure I was comfortable so I agreed assuming he would be very careful of not bumping me. Well, the first thing he did once I was all settled was to jump into bed, flop around and try to intertwine our feet and pull me to lay on his shoulder like we usually do. NOT HAPPENING! Maybe next weekend, but this weekend, one day after surgery, NOT! He didn't understand why. I explained "You know that song about the toe bone connected to the foot bone and the foot bone connected to the heel bone and the heel bone eventually connected to the hip and pelvic bones?' "Well   my toe bones are connected to my pelvic bones and stomach muscles which are really not easily moved right now" Then he understood why I suggested sleeping on the couch but still wanted me to stay so I did but it was a rough night. Tonight he is back to work so sleeping will me much more comfortable.

Each day is better, moving around more. As my dad says they took my baby carriage but left the play pen. Now the play pen is out of order for 6 weeks but it still exists. I have loads of gas and fluid filling my abdomen so I can't see the incision without pulling it.....BONUS! I have kids who are doing the laundry and wood stove and cooking while Mike is away. And I have lots of family and friends that I can call on if I need anything.

So through all of that, the slight risks, the nervousness and fear, the giggles and unspoken goodbyes I, just like any other woman who has done this, am on the road to recovery and before I know it the surgery will be a memory. A memory that will leave me needing to work harder on stomach exercises.

Life is good!

Thursday 9 October 2014

I cry, I smile, I laugh!

I woke up thinking of you today,
I cried.
I watched the slide show of pictures of you,
I cried.
I talked about you on Facebook,
I cried.
I had a coffee with your son and dad this morning, they left,
I cried.
I went through the box of memories of you stored under my bed,
I cried.
I am now looking at the picture of you in the boat fishing at home,
I cried and started to smile.
I remember the last time you fixed my tv, all covered in mud from work, flopping on my new beige couch, laughing at me being picky and fixing my tv before you left and gave my couch on last butt rub,
I smiled.
I remember our last conversation about you going to drive truck with Mike,
I smiled.
I remember my wedding just a week or so before your accident when they closed the bar at 11 pm and you tried to chew the debit machine cord in half,
I smiled.
I remember you singing Karma Camelion in the camper on the back of the truck t the farm when you were 12 or so,
I laughed.
I remember the story you told me about the mouse in your van and how you were waiting for Nick to see it crawl out the vent at her before you get rid of it,
I laughed.
I remember Christmases, summers, Thanksgivings at the camp, Easters at the camp, snowmobile trips, school days, walking to the bus, your wedding day, all of the days of the 7 months in the hospital that I was blessed to spend with you and get one last picture of the two of us. So many memories, even the times when you were that jerk of a big brother I now smile at.


6 years ago I cried every day......hell, 3 years ago I cried every day missing you. It was part of my routine. Then I decided to add a smile after every cry. I found myself eventually balancing out the smiles and cries and then noticed more smiley days than tearful. Now I laugh a lot about my memories because I feel you with me all the time. I have grown to appreciate the time we had instead of grieving the time we lost. I have my days, like today, anniversary days, that are tougher and I know its ok to shed a few tears and have some laughter. Tomorrow is another day and my memories of you will never go away. I was truly blessed to have you for a big brother, I type those words as I smile!





Thursday 1 May 2014

My dad!

Today my dad turns 64. In November 2007 the doctors told him he would only live months based on the condition of his heart......I am very blessed to have had another 7 years with him. I didn't always think I was blessed to be his daughter.

He is one of 12 children. He married my mom when he was 19 and one year later their first child was born. Three more followed within 7 years. He took a huge risk and moved us north from Niagara in 1976 with nothing but a family and a dream....well maybe some determination.

When I was a kid he was my daddy. He was away a lot for work and play so I tried very hard to garner all his attention when he was home. As I grew older I couldn't understand why all of my cousins on both sides of the family loved him so much. He was just my dad, he was nothing special, just a dad. When I hit my teens I didn't like him at all, he didn't like me much either I am sure. There was still lots of love shown but we didn't see eye to eye on much. When I became a parent I realized he was just doing the best he could with what he had. He did a fine job.

He made mistakes. Some big, some small. He had good moods and bad. I knew when to get out of his hair, I still do. So really he was human right? What made him so special to everyone? What is this aura about him that makes people want to be around him?

This week at a celebration of life for a local icon; as I watched and listened to his family bid farewell, I realized what it is. He is authentic, he is genuine, he is kind, generous and loving. His family comes first always. He tells a good joke, he's animated and fun to be around. His love for us and others emanates out of every pore in his body like the odor of garlic. (inside joke) He worked hard to raise us and taught us respect, love, work ethic and most of all that we are rich in love and family and money is only important to pay the bills. He never worried about making a lot of money, just enough. He never worried about buying fancy stuff, just what we needed. All the things I didn't like or understand about him as a child I now respect in him very much. He taught me to believe in myself, be genuine, cherish family above all else and to make sure that my choices lead me to a happy life regardless of how others conform to society.

He is a man that will be greatly missed by many one day. He is a man who's mistakes are easily forgivable and forgotten. He's a man that says I Love You rarely but shows it daily. He is a man who has suffered great loss and struggles in life yet nothing conquers him.

His determination and love has kept him here for 7 years longer than expected. For that I am thankful. To have him here today to share these thoughts with is precious for if he was gone I may never have reached this level of appreciation for him and he would never have heard it from me.

Daddy, Happy 64.....I wish we could have 100 more.

Tuesday 22 April 2014

Keep Calm and Gabby On- all new meaning today!

During March Break one of my daughters best friends was in a terrible car accident that claimed the life of her grandfather and left her paralyzed due to severe spinal cord injuries. She is 17 years old. Before the accident she was vibrant, full of life, fun to be with, determined and very strong willed. After the accident I expected her to lose some of the wind in her sails. We have done loads of fundraising and spent countless hours praying and trying to make sure she knows she is still the young woman we know and love and want in our lives. We visited her yesterday and I was so inspired by her attitude and determination. She is the same amazing girl.

Over the past few weeks we have spoken with her, encouraged her. One day I was a bit disappointed when I told her to never lose hope of walking again and she told me to stop it. She asked me to never speak of that and to accept that she will never walk again. My first thought was oh no she's losing hope, she's giving up. I realized yesterday she is so far from giving up. She is one determined young woman who is fighting very hard to learn how to adjust to her new way of living. She is only accepting help for the things that she really needs help with. When the nurses came to help her transfer from her bed to her chair she reminded them twice that she does not need help with her upper body. She spoke of how soon she will be able to do the transfer on her own without a lift or nurses. She is looking forward and working hard to learn how to do as much as she can on her own and is very adamant about not taking help for things she can do now. She's very "realistic" in the moment as her reality changes every day. She is not refusing help that she needs, she is allowing only the help that she needs and she needs less and less of it every day.

She talks about coming to visit our house again, which is not accessible and she knows it and has a very clear plan for how she is going to be able to maneuver our home. She spoke of how she can drive eventually and transfer herself without help into a vehicle from her chair and do her shopping alone. She talked about going to the beach with her friends and how she will just swim different than she used to. She doesn't see this as a end to the life she knew but a stumbling block, a need to find new ways to do the things she loves.

Don't get me wrong I know she has days/moments/hours/weeks, when she is so angry and frustrated and  depressed; that's human nature when you are dealing with a huge life change like this. The key is that she has the right attitude. She accepts those moments for what they are and moves on with adjusting to her new life and looks forward to coming home and getting back to life. She is attending school in hospital so that she can return and be on track to graduate with her friends.

I tried to imagine being in her position on my way home yesterday. Knowing that she was in the hospital and trying to encourage her is one thing but seeing her there and having to leave knowing she has to stay is a whole other ball game. When I was 17 I would have given up. I am profoundly proud of her, she has inspired me to fight harder for myself. I am going to begin paying closer attention to the changing reality of my everyday life. I am going to only accept help with what I know for a fact I cannot do and make sure that I work hard to maintain the things I can. I thought I was already doing that but I wasn't. Some days I am just plain lazy and maybe afraid of the work I have to do and its easy to shut it off because its mental. Seeing her fight so hard with concrete, physical struggles makes me want to identify my mental struggles more clearly and make them more concrete by putting them on paper and not wimping out on the hard stuff. I have her to thank for that. I believe there has to be good come from every bad situation and I think she will inspire many with her strength. Keep calm and Gabby on has much more meaning to me today.

On another note I had another hmmmm? moment the other day. My brother and nephew were in a freak boating accident going trapping. If the events of that day and previous days had not gone exactly as they did I would have lost them both. We would have been planning funerals today. Now I am working hard to appreciate what is and not ask what if but its tough to not think about it. What if this had turned out differently? My brother was inches from death in that cold water. What if he was gone? Situations like that make me realize how much I cherish my family. During times of stress, anger, frustration with our family it is so hard but so important to remember what is really important and that is only the time we have together. Once its gone, its gone. There is no logic in wasting it with anger. Accepting each other as we are and supporting each other to build a good relationship that works for everyone is essential.

Life lessons this week have left me very thankful for what I have and although I am sure these lessons will drift into the back of my mind as everyday life marches on, I am going to make a greater effort to truly be the best I can be; for my family, my friends and myself. When time runs out I want it to count.

Wednesday 12 March 2014

Define Brave

The other day a friend called me brave.

She went on to explain that she felt I was brave because I share my story publicly and I pursued a law suit and I am standing up for what I believe I right. Also because I am working hard to heal. That struck me.

This is a woman who has dealt with her own traumatic childhood event and went on to heal from it later in life.

(Disclaimer: When I say heal I me learn to keep it in its place so you can function as normal as possible, it NEVER goes away.)

Is it bravery that makes me write these blogs? Is it bravery that helped me pursue the law suit? Is it bravery that helps me keep fighting? I don't think so. I think bravery is having the courage to deal with whatever you need to deal with in life. In the case of my friend and I, we have similar experiences to deal with. The fact that we are both still alive and dealing makes us brave. It doesn't matter if something like this happened to you once or a million times, it takes courage to work through it. That makes US brave.

I post here because it helps me to write it down, get it out of my brain. Also because something good has to come of it or my suffering means nothing, if one of these posts can inspire one person, something good has come of it. That's not brave, that's coping.

My fears make me brave
My weaknesses make me strong
Feeling defeated makes me determined

Fear, weakness and defeat are the child Barbie. Bravery, strength and determination are the adult Barbie. They fight each other all the time. Adult Barbie hides child Barbie when she needs to with the mask of strength. Bravery is bringing me to healing just like my friend did and adult Barbie will win the battle.

As far as bravery goes, every woman I  know that has dealt with similar traumas has dealt with it differently, being brave is dealing with it in the best way that works for you. So I guess I am brave after all, not because I write it but because I'm facing it.

Thursday 6 March 2014

Little Girl Alone

I did something I said I would never do. I started group therapy. Every Tuesday I sit with a group of women who have lived similar experiences to mine and we share our thoughts, experience and resulting struggles with mental health. I thought I was learning a lot from individual therapy but really I wasn't getting much from it all this time. Until I sat with this group of ladies and realized that our normal is so similar I was really blocking this process at every turn. I also realized that this is why my therapist suggested I do group therapy, she was probably just as frustrated as I was at getting nowhere.

Each week we have to leave our group session with a plan for what we will do good for ourselves in the week ahead. I have come up with some pretty simple, easy stuff but this week I decided on one that is massive for me. I committed to allowing myself to cry this week. I can cry about lots of things but I never in front of people and never allow myself to cry about my childhood. It hurts to much to feel it and so I avoid it at all costs, even in therapy.

I am proud to say I did it. Today I let myself cry while thinking about my childhood specifically, reliving parts and letting myself feel it. Then I wrote what I learned.

Little Girl Alone

She felt so scared
to feel so special;
She felt so guilty
when it felt good;
She felt jealous
she didn't want his attention;
She felt so lonely
surrounded;
She felt like screaming
terrified of punishment;
She felt so mischievous
she knew it was wrong and wanted to tell on herself

She was scared of him
while she was so special to so many people
It did feel good
that's how God meant it to be, at the right time with the right person, not him
She wanted to be someone's special little girl
not his, not like this
She was never alone
in a school full of teachers and students with secrets of their own
She was screaming
silently on deaf ears and blind eyes
She was mischievous
manipulated to fear punishment

She was a little girl, surrounded yet very alone.

The most important piece of being able to identify, write and feel these facts is that I learned again; I am not that little girl anymore. Every day I am reminded that I cannot erase this from my life. Some days that brings overwhelming frustration and sadness, some days it brings me motivation and perseverance.

I am now a grown woman that nobody has control over but myself. There are so many women and men out there that would read this and say it explains them perfectly. That's why I write it, hopefully it helps one of them understand that we heal, we cope and life is worth living. We are never alone.

Monday 20 January 2014

Media Messages are Backward

Think of your brain as a brand new laptop. When you get it brand new it is open to any information you put into it. You protect it with programs to ensure it doesn`t crash. If you only put positive and productive information into it it runs really well for a really long time. If you click on everything that pops up and load it full of negative or questionable information it is in chaos and it doesn`t work well.

The kicker is we don`t get a choice at birth what kind of information goes in. We have all been trained to be negative by society and our families. We have been trained to want drama and stories of crazy things going on in the world. We have been trained to see sexuality as a powerful tool to obtain what we want, see beauty as only thin, well toned people with nice skin and a "perfect" facial structure. We are not born with these impressions, we are taught them. It doesn't end there. Media is one of; if not the greatest source of information that goes into our brains every day. It's all around us, we watch it, we listen to it on the radio, we have apps on our phones to keep us updated.

The media is responding to what we have been trained to seek. It's what keeps people watching, listening, reading. What if the media trained us to seek something else? They could slowly turn it around by adding more and more positive and sharing the positive outcomes of all negative stories. They could share stories of the beauty and success of people, show their inner beauty and health and focus less on outer beauty. Once humans start to take in more positive, they feel more positive and their brains begin to retrain. Our brains enjoy good information much more and gives us a much better feeling that we can become addicted to. I releases chemicals and hormones that makes us feel wonderful, elated.

What if humans had never been trained this way? It has been reality for so long that we just see it as the norm. It doesn't have to be. We can change it. You can change how your brain thinks. You have to choose to change it and work at it. The brain believes whatever we put in. Pay attention to what  you tell yourself.

There are some people who choose not to access any form of media simply because they know it brings negative information to their day and they have to work at removing it so why even put it in. I personally enjoy watching the news, listening to the radio. I like to know what is happening in our world and I keep a positive outlook on everything I hear or read. I know that people are shot in Toronto all the time, do I really need to hear about each and every occurrence? What good does it do to share that around the world. None. It only reminds us of the evil that surrounds us when in fact there is so much more LOVE in our world than HATE; but HATE is what we hear most about so we focus most on.

Nelson Mandela had it right. Focus only on LOVE, it is the only way. HATE destroys. It is difficult to not feel hatred sometimes but it is possible if you set your brain to listen, understand and interpret everything in a loving way.

I was reminded this morning that the first Monday back to work after the holidays has been dubbed "Blue Monday"; the day that statistics say is the most depressing day of the year. Someone did a study on the saddest day of the year and the media shares this information widely beginning the week before it happens. Everybody get ready "blue monday" is coming. They also share strategies to make your blue monday better. Interestingly this year I forgot that Blue Monday even existed because I didn`t drive to work listening to the radio, the message to be sad didn`t enter my brain and I spent that day with my kids on a snow day!  It was a good day, just like every other day.

My question is "Why do we share this at all?" "Why do we build people up and prepare them to be sad?" The first message we get when we turn on the radio or tv that morning is "this is the most depressing day of the year" so be depressed everyone, you have an excuse. What a way to start the new year.

Has anyone done studies on the happiest days of the year? Why don't we share that. Canada Day, everyone's happy. I bet we could find hundreds of days that could be dubbed the happiest day of the year to celebrate instead of picking one to focus our energies on depression. Maybe we don't need reminders to be happy but we need them to be sad? "Let's Talk" day for mental health is coming up. Would we need that day if we were all trained to be more mindful?

I love our local newspaper; the Great North Arrow; because its a good news newspaper. It shares stories of success, generosity, jokes, upcoming events. Yes it also shares sad news like obituaries and individual struggles but in a positive way that encourages celebration of life and community support for those struggling. Reading the Great North Arrow leaves you with an encouraging, hopeful feeling; exactly the opposite of the evening news that leaves you feeling discouraged about humanity aside from the one local hero story they share.

It is just so backward. I realize that the news is the news and bad things happen. Is it possible to start sharing the positive attached to each of the negatives? Share the loving responses of humanity to each tragedy.

The messages our brains receive is what we focus on the most. At the risk of being incorrect I would estimate that the majority of people take very little time to be mindful of the messages going into the brain. We tend to go with the flow and see mindfulness as work and silliness. We accept the messages we receive and interpret them accordingly. If they are negative we stay negative. Those who do make the effort to be mindful and put all messages into perspective are very lucky to be able to live a positive life; not free of negativity but they give negative messages much less value. Unfortunately this is not the norm and with major influences like the media feeding our brains doesn't it make sense that the media make the attempt to be more mindful.

It's a new job for HSA Canada, we could train the media in person centered practices and mindfulness. I truly believe and am very passionate about the fact that media messages are one of the greatest sources of input into our brains and if we could change the messages we could change how people view the world and their own individuality.

Feed people good information, they devour it and make it multiply. Feed people sad information, they devour it and make it multiply. For some reason our media chooses to make the negatives multiply, seems like a no brainer to me, just change it. We are computers, put the best information possible in for the best results.

Friday 17 January 2014

My Lupus Story

There are millions of people around the world with a Lupus story. This is mine, not more or less significant, just mine.

After struggling for many years with aches and pains and weird stuff going on, these symptoms began to get worse and worse to a point that they were interfering with daily activities. My family doctor had always written them off to a direct correlation with my mental health. Now there was an increase in symptoms and some that didn't really fit with mental health issues. It was time to see a specialist. My family doctor referred me to a Rheumatologist with the suspicion that I had Fibromyalgia. I took all my documentation with me and a list of symptoms and some pictures of my sun sensitivity rashes. I expected to leave his office with a diagnosis of Fibromyalgia and maybe a prescription for pain management. To my surprise after examining me he said I definitely did not have Fibro and he thought my symptoms were much more descriptive of Lupus in addition to two positive ANA blood tests (which are indicative but not specific to Lupus SLE).

On to further testing. They took lots of blood and set up an appointment to follow up a month later. Back to Barrie I go for the results. Of course now I am expecting a diagnosis of Lupus. When I left the month before he was 99.9% sure all my blood tests would come back positive for Lupus. Surprise again, the only test that came back positive was the ANA again (now 3 positive ANA's). His explanation? I must not be in an active phase of the disease so my blood tests are negative but he is still 99.9% convinced that it is Lupus; however, he cannot legally diagnose that without positive blood work so he diagnosed me with a non specific connective tissue disease on paper. I meet the criteria for diagnosis in every way except positive blood tests. Verbally, he told me I have Lupus and we are going to treat it symptomatically as Lupus. If and when they get worse I have to go back to him for further testing and evaluation. He gave me a prescription for a pain medication and I left.

I was confused. How can I have Lupus without testing positive for it. So I did some research and apparently this is very common in Lupus patients who have early signs or mild symptoms. It is difficult to know when I am in a flare or not. Some days my symptoms are worse than others but does that constitute a flare? When I go to Cuba or sit in the sun at home I get wicked rashes and very sick, is that a flare? When I drink alcohol with sulphites I get a crazy rash. My face has a mild rash all the time that is disguised by foundation easily for now and I wear sunscreen every day. I always have symptoms so how do I know when to go back?

So I am starting to pay more attention to symptoms each day and document them. They say it sometimes takes years to get a clinical diagnosis of Lupus. Many people live with it for years and are treated for it without a "diagnosis on paper". I did more research on effects of the sun in Lupus and can now directly relate my infection in Cuba last year and my infection last May that hospitalized me to the sun. Cuba this year will be very different; no tanning bed before and sunscreen all over, hats and shade.

This leaves me wondering if the current illness I am experiencing is not only mental health but a combination of that and Lupus because I am really not getting better. I have days that I feel great and days that I feel totally exhausted. My ability to focus and organize has not changed. The brain fog just picks its days to appear and disappear.

My hope is to return to work soon because I feel like its time. I have been working with two therapists and my doctor for almost 6 months and its time to get back to life. I am not sure this will be possible because my mental function has not improved. My mood has, my comprehension of my past has, my outlook on life has but my physical and mental functions have not. Is this mental health or Lupus? I don't know. Maybe its time to go back to the Rheumatologist or get another one who specializes in Lupus.

The important thing is, diagnosis or not, I am not letting it stop me from making my life meaningful. I am going with the flow, accepting things as they are, taking my medications, doing my therapy and putting my faith in God to lead me through. Exercise is very important to me so I make sure I have the energy for that every day which sometimes means that I lay down most of the day so that I can do it. The other day I ran 4 km and then slept the rest of the day.....maybe not a great idea but it was worth it to feel great after a run. Yesterday I was supposed to go to Barrie to go wedding dress shopping with my step daughter and I had to back out because by the time I got to Parry Sound and made a few stops I was exhausted. I still needed to grocery shop, go to Walmart, drop off a package, pick up my daughter and then drive to Barrie, shop and drive back home, make dinner, exercise etc? Just wasn't happening. I finished my chores in town, apologized to my step daughter and went home for a nap before dinner. I really struggled to push myself to exercise last night but I did it, had a Jacuzzi, read a bit and went to bed. I just have to play each day by ear. How do you work like that?

I know that when I return to work sitting all day is going to make my joints and muscles worse, the lighting in the office affects my skin (it burns all day long), typing is difficult with the pain in my hands, the list could go on but this is not about whining. This is about finding a way to cope and make life as normal as possible making adjustments as I go. So I will work with my therapist to see what kind of adjustments I need to make to be able to make work life doable. I am lucky that I will have my long term disability to back me up when I have days that I cannot go to work.

I am finding all the positives in this negative. Having a disease is not easy but I can't change it. It will never go away and in combination with my mental health diagnoses it's that much more difficult to figure out. Looking at it as something that restricts me is not an option to me. I am accepting of the fact that I have these diagnoses but I am not accepting of what the expectations of them are. I am not going to sit back expecting all of the multitude of symptoms to slowly appear and dwindle my abilities. I am fighting each symptom as they appear and finding a way to work around it to make life meaningful.

I had this notion in my head that life is not meaningful unless I am working. I realized with the help of my therapist that living every day happy and healthy with a good attitude makes life meaningful. Being at home, being a stay at home mom is meaningful, it's important and until I can get back to work it is exactly where I need to be.

So there's my story. Lupus or not lupus, that is the question. Although my family doctor is adamant that he does not believe it is, the specialist is 99.9% sure and believes that if we can catch a flare my blood will test positive. Regardless, I know what I have been told and I am dealing with it as it comes, I don't need a positive blood test to confirm that I need to modify and take medication, I just do what I need to do. I pay attention to all my body functions and will go back to see the specialist when I feel it is getting worse. Until then I am just living each day as it happens and trusting that God knows best. Everyday is still a good day!

Friday 10 January 2014

Just another day in PARADISE!

Every day that we wake up is a good day!

Some days we don't feel as well as others. But every day we wake up is a good day!

Yesterday was what we would normally call a bad day for me. I knew it was coming. Christmas is always a high time for me and when it is all over and the kids go back to school I hit a low point. I was prepared for it, or so I thought.

I have this hole, I may have spoken of before. It opens up when I least expect it and takes me out for a day. I am starting to pay attention to what opens it up. Loneliness opens it up. I try to fill it with lots of different things but it never gets full until I have the people I love around me and I can feel purposeful in sharing my life with them.

So those days are typically what I used to call "bad days". But yesterday; when I was laying on the couch thinking that if I have to continue to do this for who knows how many years I would rather not be alive; I reminded myself that this is just one day and it will pass and tomorrow will be better. I opened my eyes this day, I am alive, I am blessed and feeling crappy one day doesn't make it a bad day, every day we are alive is a good day! I accepted the day as it was and left it to God to lead me through it.

I wasn't as productive as I could have been yesterday but I followed through with the things I had committed to doing. I made frozen pizza for dinner, but I made dinner. I took a rest during my workout, but I worked out. I had a short phone call with my friend, but we talked.

It's all about adjusting to the day. It's not a bad day, I am alive, it's a good day.



Today I woke feeling better. Today is a better day. My husband phoned this morning and when I asked how he was he replied "Just another day in paradise". And he wasn't being sarcastic or trying to be funny. This is how he actually sees the world. He sees every day as a good day. He has been driving in blizzards all week and is on his way back into the US to finish his week of work only to have to drive back home tonight in more bad weather. He just takes it as it comes. We are in PARADISE. What is not beautiful around us? We are alive! And guess what; when we die we go to an even more beautiful place.

(Another piece of evidence that God has led me; my husband. He led me to him. As odd as our relationship seemed at first with our age difference it just fit perfect and I couldn't deny it. We balance each other, he reminds me that every day is a good day. His view of life is very simplistic, concrete. When I complicate things he untangles them. When he lacks emotion I explain it to him.  (I truly believe he has lived with undiagnosed Aspergers Syndrome his whole life) He is black and white, I am grey. I am emotional, he appears as a stone. But that's another whole blog post.)

Paradise. Every day we are alive is a good day. Find something today to be thankful for, something that reminds you that today is a good day even if you feel crappy. It's just another day in paradise.

Thursday 9 January 2014

Having Faith

When I was a child we did not attend church or have a religion per say. My parents didn`t practice any religion, say prayers aloud or speak much of greater beings. They did however believe in their own spiritual beliefs and encouraged us to find ours. We had the option of attending Sunday School at the Hosicks home in Dunchurch and we all attended. A local woman would come around and pick us up with her van on Sunday mornings and we would go to George and Dorothy`s to learn about God and the Bible. When this was no longer an option my mother opened our home to a couple who came from Orillia to teach (friends of George and Dorothys Hosicks`s) once a month to local children. She did this because we wanted to learn more. I followed up with that couple by doing Bible studies by mail for many years.

I have always had a strong urge (as many do I am sure) to explore the concept of faith, spirituality, religion. I quickly dropped the religion search as I realized that for me spirituality is within me and is defined by me and my individual beliefs. I believe in God, Jesus and the Bible.(Now I am not sure I believe God has a gender but for the purpose of writing I will use Him.) I respect that others have different beliefs and I will never force mine on anyone. I will share my beliefs if asked and I do share my beliefs with my kids leaving the doors wide open for them to develop their own.

He has always been a driving force in my life. Afterall, He has always been there, I just needed to acknowledge Him. I used to pray to Him when times got tough or when I really wanted something and get upset or challenge His  ways when things didn`t go my way. How could He let such awful things happen? If He really loved me why was I going through such tough times and most of all if He really loved me why hadn`t I won the lottery yet darn it? I had "given myself to Him" numerous times only to take myself away when He didn't please me.

39 years on this journey and I am still learning so much about Him. In the last 5 years, much more that the previous 34. On January 1st 2013 I committed to read a daily devotional book. I spent time with God every day in prayer when I woke and prayer when I went to bed (most days). I thought about each days devotion and how it fit into my life.

God has been leading me to Him my whole life. Everything I have lived through has brought me great learning and closer to God. I know a lot of people believe God makes everything happen. I don't. I think the awful stuff is beyond even His control. He leads us to Him and if we choose to ignore and take another path, that is our free will. Murder, abuse, terror is not controlled by Him but by those who choose to commit those acts. The only part He has in it is that He sits with us through it. He holds our hands, He carries us when needed. He carried me as a child through 5 horrific years. He carried me through my brothers illness and death. He is holding my hand through the journey of healing I am on right now. I can look back through my life and pinpoint times where I was ignoring Him, He was leading me and I was running the other way in fear of the unknown or in lack of faith.

I am currently reading a book about a Neurosurgeon who had a near death experience after being virtually an atheist his whole life. He is now God's greatest cheerleader. He experienced heaven, the afterlife and God and came back to tell us about it. Amazingly his experience is very similar to others I have read about. The most significant pieces; the love, the smells, the beauty are all the same in every experience I have read about. One thing he writes that struck me is that ANXIETY (my greatest struggle) is a result of losing faith in God. And again I realize He is leading me to Him. I have looked at this book a bazillion times on the Walmart shelf and have been to cheap to buy it, then I get a Kobo for Christmas and its cheaper to buy there so I make it the first book I buy. I have been reading a little bit each night and when I came across this sentence it lit up for me. That's the ticket. When I feel anxious I need to remember to keep my faith in Him knowing that He is taking me where I need to be, I need to follow His lead. I am impatient and tired of waiting most days and I have to remind myself to take it day by day and do what I feel He is telling me to do. I have a new view of anxiety. I needed this new view to move forward in my journey. He brought me this new view. He has brought this book to my attention many times, I was ignoring Him and so He brought my husband to the Kobo section for Christmas and brought the book to me cheaper so I would read it. (Oddly my husband had bought me another gift and had the sudden urge on Christmas Eve to return it and go get the Kobo; spooookyyyyyy!)

The more time I spend with Him the more real I feel. I struggle every day with illness but I am ok with that when He is part of my day. I contradict my own brain every day by feeling horrible physically and mentally but glowing on the inside with love. I wake up everyday glowing on the inside and then put my mind to work on getting through the day. Oddly, the writer of the book I speak of says the same thing. It's contradictory to logic. It's contradictory to brain function; and he is a neurosurgeon, who better to understand brain function. It's all in faith, not believe what we see but see what we believe. If we believe, we see it, we feel it, we live it. It surrounds us and even though it doesn't take the struggles away it makes them easier to cope with.

It's all about faith. Whether you believe in God or not we all have spirituality inside us. We all look to a higher power or being when times get tough or we are looking for prayer for someone or ourselves. I personally believe we are all answered by God regardless of our belief in His existence. He is there for everyone, all of the time. People who spend time with Him feel more of His presence but He is there for all of us always. When we bask in our spirituality it is He who we feel warming us from the inside out. He is bringing us peace.

I am sure many people would say this is a bunch of hogwash and I respect that. All I can say is that honestly handing my life to God without expectation and spending time with Him everyday has changed my life. When I fall away for a bit my struggles are harder to handle. He has been leading me to Him for 39 years and I have finally decided to follow. I don't got to church, I practice within myself and with Him. I will follow Him and see where we go together.

Case in point; I just had a return to work conversation with a friend which always leaves me confused and feeling overwhelmed. I now have a list of things to look at to reignite my passion for my job. When I look at the list and choose where to start I know God will be in that choice, He will lead me. I will struggle to build the motivation to do it while he holds my hand but I can rest assured that He will be there. When I got off the phone from this conversation I stopped and reminded myself that I can let my anxiety and stress about it subside because I will have His help to get through it. I have faith in Him.This is my way and it works for me.

Wednesday 8 January 2014

Spoon Inventory

The other day a friend of mine reminded me of The Spoon Theory.

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

I had read about it before but paid more attention once I read it again. It was written by a woman who lives with Lupus and uses spoons to represent energy to explain what it is like to live each day with a chronic illness and how you must choose wisely how to spend your time each day. Many people have unlimited energy (spoons), people with chronic illness or lifelong disabilities have limited amounts of energy (spoons).

Amazingly it is a fantastic way to explain many invisible and visible illnesses or disabilities, not just Lupus. Thinking more deeply about this theory I compared it to my life and realized that it would really be helpful for me to explain to people how I live every day. I have limited spoons. I use a spoon every time I do something, even very small things like getting out of bed. I haven't really counted how many spoons I use before I need rest yet but it doesn't take long for my spoons to expire each day. Some days I have more spoons than others and even have some left over at the end of some days. Some days I start with very few.

For each of these activities I use a spoon:
Getting up
making coffee
having a shower
cleaning up my kitchen
brushing my teeth
shovelling
banking
household bills
waking the kids and getting them to school
eating breakfast
getting the mail
putting wood in the fire
laundry
making dinner
feeding the pets

You get the point. Many people can get through their morning chores as routine and get to work, put in a full day, grab a few groceries, and get home before using up a spoon. They don't have to think about it, it's just what they do every day. They have spoons left for family activities, community events etc. I used to be like that as well. Now I have to think about everything I do, it takes much more energy than it ever did before. Each thing usually uses one full spoon, even getting out of bed. If I know I have an evening activity I have to choose wisely how I use my energy through the day. 

This is just the way it is and I continue to adjust to it. 

While I think The Spoon Theory is an amazing way of explaining the way I live, I choose to look at it differently. Instead of focusing on how many spoons I have in a day and how they disappear leaving me tired; I am dealing with my spoons as I get them and focusing on how I can accumulate at least one  more for tomorrow, fill them up. I choose to pay attention to what I need to change or adjust in order to increase my spoon inventory. The writer of The Spoon Theory writes that she would love to have more spoons but she has never been able to get more. For me this is the kind of self talk that would keep me stuck. " I can never get more spoons" would keep me stuck and feeling helpless. "I can find a way to get more spoons", "I will have more spoons tomorrow", "I will do something today that will help me have more spoons tomorrow". I will probably keep going in the same cycle, some days lots of spoons, some days very few spoons and some days in between. If I stay stuck in that in my brain I will not try harder to live life to the fullest, I will just accept it as it is; happy with potential I am not realizing yet. I want to realize the potential that I envision for my life so I am going to focus on spoon accumulation. I will live each day as it comes, managing the spoons I have wisely and plan for more spoons the next day and the day after that. 

Using this theory to explain my life to people will be useful if they ask. What I won't do is use it to excuse myself from life, gain sympathy or allow myself to get stuck in my illness. My illness(es) are a part of who I am and they affect how I live, they don't stop my life. I am going to live my life to the fullest and instead of emptying spoons I am going to fill them up in the places I need to every day.

It's a spoon half empty/half full thing.