Clueless

I am sooooo lost.  I have no idea what I'm doing, what I should be doing or where I should do this.

Three years ago I was forced to take a medical retirement.  I should be settled into my new life, but nothing can be further from the truth.

Since being forced onto medical retirement I have dived into a plethora of volunteer roles.  Along with this, I have attempted to work as a freelance writer.

Right now I hold four volunteer roles, and I feel absolutely useless.  I have yet to find my sweet spot. Some of my roles fill my soul whereas one in particular makes me want to drink.  The role I LOVE is  the adoption event coordinator for The Humane Animal Rescue Team.  The events are so much fun and what I appreciate the most is the fellow volunteers.  It is obvious that there is one reason that people volunteer at the events.  It's all about the dogs and the commitment to animal rescue,  I have so much admiration for those who go out on the rescue missions.  They see things that I am too weak to see.

Now I desperately need a new purpose. I have even entertained the idea of going back to work.  It's hard to acknowledge the fact that doing this will only cause my disease to progress faster. There's a lack of self-esteem that comes with not earning your paycheque.  I had career ambitions that will never come to fruition. My life did not go as planned and that sucks.

Now I have to take a serious and honest look at myself.  What am I good at?  What are my skills?  I'm becoming increasingly disillusioned with writing.  I've applied for many positions with very little success. 

It's time to get over what was, my dreams and ambitions and move on.  The biggest question is how?

Ableism and the Victim Mentality

Since I took a medical retirement I've been busy either volunteering or doing glamorous housewife duties such as grocery shopping or taking the dog to the vet.  In between this, I like to be a lady who lunches.
Yesterday I met a friend for lunch.  When asked the perfunctory "for how many" the hostess looked at me for the answer.  Today I took the dog to the vet.  As I was waiting for my assistant to gather up my dog Anderson Cooper, a woman left the warmth of her vehicle to open the door to the vet clinic for me.  While in the clinic, the receptionist complimented my hair and a woman brought her puppy over to me to meet.  These occurrences are common in my life.  Although I use a wheelchair I do not find that people ignore me or are condescending toward me.
I am very active on social media.  I first heard the term ableism on Facebook.  There are many people with disabilities that feel society is out to get them.

These are the people that protested the movie Me Before You.  In case you haven't seen it it's about a young, handsome rich man who becomes a quadriplegic from an accident.  He decided that he did not want to live his life in a wheelchair so he sought out assisted suicide.  His parents wanted him to wait six months before he did the deed, he agrees.  In comes beautiful assistant and as things happen, they fall in love.  Her love was not enough to keep him from offing himself.  He ends up leaving her a rich woman.  

The protesters thought that a piece of fiction would lead to a disabled holocaust.  They feared that instead of receiving medical treatment when they need it, they would be offered euthanasia.  A movie, which was pretty boring, would lead to an epic number of suicides by people with disabilities.  
Even more puzzling than the notion that a movie will cause a disabled genocide is the anti-cure movement.  Apparently the desire to cure conditions like muscular dystrophy, multiple sclerosis and spinal cord injury is ableist.  The inclination to rid people of said conditions is telling them that there is something intrinsically wrong with them.  It is telling them that they are not good enough.  I have a disease called spinal muscular atrophy.  Recently a treatment for spinal muscular atrophy has been found.  Instead of being offended, I am thrilled.  This may mean that I might regain some upper body strength.  Along with that a simple cold may no longer be life threatening for me.  Sign me up!
I don't identify with my disability.  I identify myself as a wife, fashion maven, dog mom and a friend. In my opinion those who protest a movie or are resistant to a cure are victims.  They are so deeply rooted in their disability that they become a victim to it.  I firmly believe that the way we are treated is influenced by how we present ourself.  If someone is protesting a movie because they fear a piece of fiction will lead to their demise they appear to be a victim.  Before I leave my home I have my hair done, my make-up on and my outfit is well put together.  I receive compliments almost every day.  I think by taking pride in my appearance my wheelchair is less obvious and who I am is more apparent.  The smile on my face and my open demeanour makes me approachable.  I can't deny that I have a disability but I can be certain that a movie won't lead to my extinction and a treatment for SMA will only make my life richer

2017 and an Uncooperative Rooster

It's the year of the rooster and according to Chinese astrology I am a rooster. Given this, I thought that this would be my year. According to Chinese astrology this is just the opposite.  I'm supposed to have a difficult year in all facets of my life.  How much is a girl supposed to take?  I'm very superstitious. There is no way I would walk under a ladder and if a black cat crosses my path, I'm turning around and going the other way!  
Truthfully, nothing can be worse than 2016. Last year I spent two weeks in the ICU, I broke my femur three weeks after I was discharged and I had to say goodbye to my sweet dog Kailey just a few weeks ago. 2016 has not been good to the Young's.
2016 saw a very difficult relationship with my parents and my sister. All I can do is hope that this will change. The last conversation that I had with my father began with me asking him and mother out for breakfast.  Apparently somebody had told him what I say on Facebook which I consider part of my support system. Our conversation ended with him yelling and demanding that I add him on Facebook before he hung up on me. This year I must accept that somethings will never change. A friend of mine pointed out to me that I have way more good than bad in my life. She's right. I have an abundance of close friends for who I am truly grateful for. The best thing that I can do in the coming year is show gratitude for the good and leave the bad behind me.
This new year may bring about a change in my health. There is finally a treatment for spinal muscular atrophy. This does not mean that I will walk, however it may mean that I will get back upper body strength. This would mean more independence for me. This exceeds any dreams that I had for myself. I have accepted SMA and all that goes along with it. I have to say that I would not be able to do this without my loving husband Tim. When I was in ICU he stayed with me the entire time. He is my strength and home.
Despite what the stars are predicting, I'm going to do my best to make this a good year. I am looking at different organizations where I can dedicate my time to causes that mean the most to me.  I have learned a lot last year.  When things aren't going well you really learn who your friends are.  I learned that I am blessed with the most amazing people in my life.  
I'm not letting that rooster get me down.  I'm planning on having an awesome year.  🎉❤🍸

Paw prints in my heart and the rainbow bridge

Christmas has never been my favourite time of the year. It seems that there is always been loss. We lost Tim's mother, his beloved aunt Verna and our sweet dog Scooter in past holiday seasons. Yesterday my sweet dog Kailey had a routine vet check up. I will admit that at 13 years old she has been moving slower and old-age was catching up on her. We did everything we could do including the best prescription medications available and acupuncture. My vet made me the promise that she would let me know when it was time as I could not make the decision on my own to let go of my sweet Kailey. Yesterday it was time. We expected her typical check up and vaccinations. Instead the vet looked at her pale gums, noted how much weight she had lost and told us it was time. We had the option to bring her home for a few days, but I knew if we did I wouldn't have the courage to let her go.
When we first adopted her I was asked to write an article on adopting a dog with potential health problems. I thought I would share it in memory of my sweet puppy girl. My dear Kailey I hope you and Scooter are playing like you used to under pain-free over the rainbow bridge.

We have been owners to our Bichon cross, Scooter, for 3 years. One day we had been buying supplies for our rabbit at a small pet store by our home. There was poor Scooter…standing on his back legs waving his front paws in a hyper beg. "Pick Me, Please Pick Me". I asked if I could hold him for a minute, as he seemed lonely. He immediately nuzzled under my chin. My husband insisted that he come home with us. "No way!" I thought. We live in an apartment condo, so how will we manage a dog. Not to mention, he was $500! This time, I let my husband win and we headed home with puppy in hand.

The next year and a half were very trying. Scooter did not housetrain easily. Our perfect $500 puppy had some problems. Just one of them was, it seemed that he was used to sleeping in his own feces. He would relieve himself and then sleep in it as he had been forced to do in the past. Or we would be outside with him for an hour, and of course, he wouldn’t do his business until he was on our living room carpet. Despite this, we did not give up on him. At about 2 years old, things began to improve. Today Scooter is a well behaved, loved member of our family.

I now really wanted another dog to complete our family. We were at work all day and I just hated leaving Scooter alone. When we walked him in the park adjacent to our complex, he would love to play with other dogs. My search began. I checked the SPCA web site on a daily basis. Unfortunately, there are many big beautiful dogs at the SPCA desperate for a loving home. As we do not have a back yard, we could not keep a big dog happy or we would have taken one of these dogs. Perhaps someone reading this will consider going to their local SPCA and bringing home a dog in need. That would be so nice if you would?

One day I was scanning the classifieds in the local paper when I came across an interesting ad. A breeder had some adult dogs that were ready for retirement in a loving committed home. I checked out the website. There was a sweet Llasa Apso adult male. I sent the breeder an email hoping we were the right home for him. I promptly received a response. She advised me that these adult dogs were so used to running free on her acreage home that they would not be happy in an apartment. There was however, a baby Llasa girl. She was giving her away for free as she had a bad Over-bite and given that she guaranteed all of her puppy’s health, including their teeth, she could not guarantee this girl’s. She liked the sound of me in my email and offered me this puppy. I felt that I was up for the challenge of loving this puppy who was Less Than Perfect.

The next weekend we took the long drive to Bonnyville to pick up our new puppy. It was love at first sight! She was the most beautiful puppy I had ever seen. We decided to name her Kailey. She rode to her new home in Edmonton in her crate without so much as a whimper. When we brought her inside our home, Scooter went to check out what was in the bright pink crate. She let out an awful noise that immediately let him know what the pack order was going to be…and that was going to be her as Leader Of The Pack from the very first greeting.

She was paper trained, but when she was old enough she went outside with her big brother to do her business. Training Kailey was completely different that training Scooter. She had very few accidents and she caught on to going outside almost immediately. She was due for her third set of shots about a month after we got her. I was eager to discuss her bite with the Vet so that I could prepare for any future difficulty she might have. Upon examining her, he did acknowledge that she did have a severe Over-bite, but he did not anticipate any difficulty. To date, she eats her hard food without difficulty and has lost most of her puppy teeth. So far…so good!

As the breeder we got her from, is responsible, I had to sign a Spay/Neuter contract. This meant that my little girl had to be spayed as to prevent more pups with her dental problems. As only my Kailey could do, she came through her surgery without a hitch.

Kailey is only 9 months old now, but she has a confident temperament and a sweet disposition. At 6 months old, she began visiting frail seniors in a continuing care centre. There was one lady, who has since passed away, who relished Kailey’s visits. Her face would light up with joy when we put Kailey on her bed.

When she’s not bringing joy to those less fortunate, Kailey spends her days playing with her brother Scooter or snuggling up with my husband and myself. She greets any visitors with puppy kisses and a tail wagging with enthusiasm. When we come home from work, she comes to the door with unbridled joy. We love her so much and could not imagine life without her. I could not write enough to do her justice.

She may be Less Than Perfect but to us, she is the most perfect puppy in the world. And to think that sometimes people turn their backs on such a puppy or dog. They don't know what they are missing.

Hurt and The Holidays

Streets are decorated with festive lights and decorations.  In 19 days families will gather together sharing gifts and feasting on turkey and all the delectable side dishes.  It will be a day of laughter and love.
I look around my home.  It's modern yet cozy.  It's a place that clearly welcomes dogs as there are 2 fluffy dog beds and toys strewn about.  It's welcoming, there is always a space on the sofa for visitors.  There is something noticeabley abscent, a Christmas tree, a wreath on the door or a nativity scene.  The only sign of Christmas is the few Christmas cards that adorn the china cabinet.  I was volunteering at The Mustard Seed this week and Christmas carols filled the air.  The sound of them almost caused me to panic.  Christmas has become the most difficult time of the year.  This year is particularly difficult.  I want to take some Ambien and sleep right through it.
Relationships with my father and sister are so damaged that I feel as though I have no birth family.  Every time I talk to my father he is full of vitriol and accusation.  The latest reason for his distain is the way I worded an email I sent them when they were away sharing sad news.
My mother has Alzheimer's.  Last week I called and she was tearful and afraid.  She was alone and was afraid to be.  I quickly made arrangements for her to be picked up and made sure she ate lunch when she got here.  I sent him an email letting him know where she was.  He called shortly after, accusing me of lying and wanting to pick up mom immediately.  My heart hurt the worst when he put mother on the spot convincing her she wasn't crying or upset.  Her guilt and confusion broke my heart.
Despite all the pain my family causes I am blessed.  I have truly the greatest husband in the world.  He has stood by me  through sickness and health and is truly my rock.  I've had almost 20 years of an incredible marriage.  Not only do I have Tim, I have the most extraordinary friends.  Two that I love and value had lunch with me last week.  They wanted to meet me to express to me how significant I am.  I have my friend Angela who rushed to my bedside when I was in the iCU .  And I have Rose, the one who was here when I had a day of panic attacks and who had taken the role of my big sister.
Eventhough I'm blessed my heart can't let go of the pain caused by my family.  I wish I could follow advice given to me to let them go.  My heart is too soft to do this.  Even though my father and sister are their own unit I will always long to be accepted and let in.
What do I do about the holidays?  I honestly don't know.  I've never experienced hurt like this and feel alone despite all of the incredible people in my life. When you are rejected and scorned by your family your self esteem takes a beating.  I don't want to burden people with my sadness, I want to continue to help and lift others up.
I just wish there was no December 25.

Inspiration and hope

I have been looking forward to today for a long time. I am meeting with a parent who's child also has spinal muscular atrophy.  We will be meeting at my office a.k.a. Starbucks. Why am I so excited about this? It's because today I get to give the gift of hope. For someone who is 47 years old living with SMA (spinal muscular atrophy)  I'm doing extremely well. I have had a somewhat lucrative career, a wonderful marriage and now I spend my time chasing my bliss and volunteering with many community groups. I would say that have a full and wonderful life.
If I had a child with SMA I would be terrified and worried about what the future would hold. Today I hope to give a gift, the gift of hope. Granted everyone I know who has SMA has a unique set of problems. This does not mean that most of them can't be dealt with and life can be beautiful.
Many people I know with SMA through various Facebook groups despise being called an inspiration. I don't find the fact that I get out of bed every day and make myself somewhat presentable before I go out inspiring.  However if a parent is inspired and is hopeful after talking to me and learning about my life I think being an inspiration rocks. If I meet a child with SMA and after meeting me they realize for the first time that they can have a career, be married and live a full life then I truly feel like I have a purpose. I have been inspired by people and to me they have given me a gift. I would like to share the gift of inspiration today.
This is the best you are going to get out of me without my 1st cup of coffee.😉. I am going to put on my make up, over accessorize and hopefully give someone the gift of hope.  Look around you today, there might be somebody right there who needs you to give them the gift of hope.

Sickness and Self Loathing

I was one of those people who couldn't remember the last time I had so much as a cold.  I must confess that I felt superior as my coworkers sniffled and coughed their way through winter while my immune system of steel protected me from all of the cooties that floated around the office.
In June my luck ran out.  When I say it ran out it got on a plane and left the country.  I have a neuromuscular disease called spinal muscular atrophy.  It is a progressive disease that has left me a quadrapelegic.   Because of it my chest muscles have weakened to the point but I do not have the ability to cough.
It started as any cold would start, the sore throat and the annoying cough.  By the end of the day my fever was over 40 degrees and I was sicker than I remember.  I ended up in the ICU that night where I remained for 14 days.  I have no memory of showering, doing my hair or being taken to the ambulance.  It may be thought of that taking time out to spend on my grooming was a bit odd.  There was no way that I was going to the hospital with hairy legs, a girl still needs to look her best!
The first three nights we were not sure that I was going to survive.  My fever raged on and I was too weak to clear the secretions that filled my chest.  Life support was being considered as I was too weak to fight off the virus on my own. On the fourth day I began to improve. Life-threatening secretions still filled my chest but I was conscious and able to talk. It was at that point that they began bringing meals to my room which I sent away untouched. As this continued the medical staff began to ask questions.  Many people with spinal muscular atrophy lose  their ability to swallow.  Eating become Becomes risky for many as the aspirate food into their lungs which turns into pneumonia.  Given my unwillingness to eat they suspected that I was having difficulty swallowing. They recommended that I undergo a swallowing study. This is where they have an individual swallows things of varying texture while an x-ray follows the food going down to the stomach to ensure that it is not going in to the lungs. They also recommended that I had a surgery to implant a feeding tube into my abdomen. This set me into a place of fear and panic. My swallowing is just fine, but what I was doing wasn't. I finally hadto admit my dirty little secret. I was afraid that I had to let go of the one thing that gave me control. Before I ended up in the hospital I was restricting my food. If I went 72 hours without eating I felt very accomplished. It was either tell the truth or be force fed through a tube.

The next day when my doctor was doing rounds we discussed my lack of nutrition. I tearfully admitted how I've been restricting my food. It felt good to finally admit it. My loving husband knew that I did not eat  enough but he didn't know why.  I refused the swallowing study as I did not want to be forced to put anything into my stomach.  As I was malnourished and my potassium and phosphate levels were dangerously low I was fed TPN. TPN is a thick substance that a person is fed  through an IV. I was receiving 700 cal a day.  The thought of 700 cal being forced into my body against my will caused me huge anxiety. Although I was not fit to go home yet as I was still unable to clear my chest secretions I was told that I should be eating 1500 cal a day and 70 g of that should be protein.

By day 14 I was eating enough to allay their concern and was well enough to go home.  For the first few days I ate well to appease my husband. Throughout my whole 14 days in the ICU he only left my side to go home and shower. I felt terrible for putting him through this. Eventually I returned to where I was most comfortable, restricting.  

About two weeks after I was discharged from the hospital I had another high fever of around 40°. My loving husband rushed me back to the emergency room where I was diagnosed with the flu.  My blood work showed that I was once again malnourished. Before being allowed to go home my potassium was once again replaced through an IV.

When we got home I was tired and weak. As I was getting ready for bed,  I was sitting on the toilet I fainted falling to the floor. This resulted in a left femur fracture.  Having had many broken bones in the past I immediately knew that I broke my leg. I had no desire to go back to the ER that night so my husband painfully lifted me into bed. The next day the pain was even more intense. The ambulance was called and I was once again taken into the hospital.

Although my leg was casted the pain and challenges with transferring forced me into bed for the entire summer. This left me more time than I needed to think and ruminate.  It finally hit me, I came closer to death then I ever had before. I began to have a gripping panic attacks and flashbacks of being in the hospital. There were times that I was in so much pain that I wished I would've died. Even worse, I felt incredibly useless and like a huge burden. I was completely unable to do anything for myself. My husband was left with the unpleasant task of helping me with the bedpan.

I kept up-to-date on Facebook. Everyone I knew was either busy working or enjoying summer vacations. I had never felt more isolated or alone. The more alone I felt, the more the panic attacks gripped me.  I was also hurt by people who I thought were close friends. Sadly I had never heard a word from people who I thought we were closest to me.  This led me to question my self worth even further.

Along with being disappointed I was surprised and touched by the many people who reached out to me and those who came to visit me sitting on my bed with me catching me up on the latest news.  Even with this, I felt alone. I was not able to participate in any of the joys of summer nor was I contributing anything to society.

I spent my time on Facebook living my life vicariously through others while feeling worthless and on the fringe of society. The panic attacks became worse.  

I was finally able to leave my bed but I am still wearing a leg brace as the fracture that took place in July it's still not healed in November. I am still in a great deal of pain which forces me in my bed much more than I want to be.  The extreme stress but my body was under caused me to lose most of my hair. A while back I had a panic attack that was so bad that I was forced to call 911.  Not only did the paramedics provide me with Ativan to settle my panic attack they put me in touch with resources through Canadian mental health. I saw a psychiatrist on an emergency basis who not only provided me with an antidepressant and Xanax but a referral to see a psychologist in the community.

According to the orthopaedic surgeon that I see I have at least two more months before my leg is healed. In those two months I will try with assistance to get a hold of my eating disorder. I will try to put my panic attacks behind me. Most of all I will try to find myself again.