Jun
2016

Why Being Disabled Isn’t a Tragedy, but Having Huge Parts of Your Life Stripped Away Is

categories: Chronic Illness, Depression, Grieving

There’s been a big debate going on over social media the last couple days about the book turned movie, Me Before You by JoJo Moyes. If you don’t want to know how the story ends, you may not want to read this entry.

The premise of the story is a man who was into extreme sports, had an accident, and became a paraplegic. This woman starts to work as his support worker, they fall in love, but in the end he decides to opt for assisted suicide.

People are boycotting this movie because they think it’s showing having a disability as being tragic. I don’t think that’s what Moyes is portraying in her story at all. It’s not the being disabled that’s tragic, it’s having everything you love doing taken away that’s catastrophic.

The male lead in this story was a man’s man. Burly. Athletic. Dangerous. Now he relies on someone else to simply brush his teeth. In his eyes, his dignity has been stripped from him.

mebeforeyou-cover

Imagine being a singer and your vocal chords are damaged – never to sing again. An artist whose arms have been amputated – never to paint again. Or a foodie, wannabe chef home cook with ischemic bowels thought never to eat again. Enter your passion and an accident that would rob it all from you – wouldn’t that be absolutely devastating? Your passions, hobbies, even your work, everything is all of a sudden limited or taken away from you completely. When all your life you’ve been told that anything is possible, now all of a sudden so many things that are impossible.

I was originally told I would never eat or drink again due to the removal of my small intestine and a third of my large. I LOVE my food. I love cooking, eating and hosting dinner parties. I’ve dreamt of opening a restaurant, teaching my kids to cook, and of course competing on Chopped Canada (which let’s be honest, I’m nowhere good enough of a cook to ever be on that show). I loved having people over and cooking for them and with thinking I would never eat or drink again, would I really want to cook meals for other people and not be able to partake? I’m a dreamer and these were only a few of the ones on my heart. But after my first diagnosis, my dreams came crashing down.

After my diagnosis, I went to a really dark place. I was extremely depressed. A huge portion of my life was all of a sudden gone. And I was beyond devastated.

So instead of seeing this movie as making disabilities portrayed as a tragic thing, what if we see it as dealing with a situational depression? There’s so much talk about depression and how it’s a part of a disease. Would people think of this movie differently if we saw it from that perspective? That his suicide isn’t because of the disability itself but because of the loss correlated with becoming disabled.

It takes time to adjust to the new normal after an accident or a diagnosis. Some people adjust more easily than others. Some aren’t able to adjust at all. If it wasn’t for having to take care of my daughter, there’s no way I would get out of bed. She helped me get out of my depression. Not everyone is lucky enough to have someone or something to fight for. And when all you do is compare your now to your past, it’s HARD! Always thinking of the things you loved to do, that you never will get to do again.

You still don’t want to go see the movie? Fine. But don’t belittle those of us who do see becoming disabled as tragic. Again, it’s not the disability itself that breaks us; it’s our past that we loved and lost that we mourn.


May
2016

Dealing with Guilt and Fears as a Chronically Ill Mom

categories: Chronic Illness, Family, Parenting

I love being a mom. Love it. I’ve always wanted to be a mom. I still remember watching Angels in the Outfield when I was young and saying afterwards that I wanted to be a foster or adoptive mom. Give me a whole slew of children and my life would be fulfilled.

Two weeks before I got sick, I randomly turned to my husband and asked him what his thoughts were on adoption. I told him that I’d love to have one or two more of our own, but there are so many kids in need of a home, and that I really wanted to adopt. Crazy thing is, we had no way of knowing that I was about to get sick and not be healthy enough to get pregnant again and that if we wanted to grow our family, our option would be to adopt. I really do believe that that was God’s way of preparing our hearts for what was to come.

Along with dreaming of how big our family would one day be, I also thought a lot about what type of mom I wanted to be, how we would raise our kids, and all that went with the soccer mom life. I looked forward to being the hockey mom, going to piano recitals, and being a Girl Guide leader so that I could go on weekend camping trips with my daughter(s). Call me old fashioned, but I loved the idea of having dinner on the table for my family, making lunches for them and carting my kiddos around with me in the minivan.

My life as a mom now looks significantly different. I won’t be able to do the super early hockey practices as I now barely function in the mornings. Everyone who knows me may giggle at this thinking it has to do with my severe coffee addiction (no really, can I hook it up to my Hickman??)

truenorth

 

I start my day slinging my TPN backpack over my shoulder, grabbing Maddie (some days with my forearms if my arthritis is flaring up), I hobble down the stairs, change her and get her to her highchair quickly before I get too woozy. I get extremely light headed and have a hard time breathing first thing in the morning, what I assume is a consequence to having my lungs filled with fluid and then drained while at the hospital. The long days of piano recitals is a dream of the past as leaving the house for more than a couple hours at a time leaves me incapacitated for at least the rest of the day. And going camping would mean not being able to find a sterile location to be able to get my TPN going.

Our daily routine at home really depends on how I feel. Hopefully we make it outside for half an hour – but never longer as it completely wipes me out. I can’t be that fun mom that plays with my daughter and chases her around. Even just helping her go down the slide a couple times takes everything out of me.

I don’t want to come off full of myself, but I know I’m a good mom. I’m not even close to perfect, but I love my daughter more than words could ever say and I do the best that I can. I’ve really had to learn how to deal with my fears and guilt surrounding being a chronically ill mom. Guilt that she won’t get all the experiences I want her to because I can’t keep up. Guilt that she’ll get more TV time that I’d like because I don’t feel well enough to entertain her myself. Guilt that she doesn’t have the mom that she would have had if I hadn’t gotten sick. Fear that I’ll fall sick again and won’t be here to see her grow up. Fear that she will one day resent me because of all of this.

You can say all the encouraging words you want after reading this, hoping to uplift my spirits. But all you chronically ill parents out there 100% understand what I’m saying and I know I’m not alone in this. There’s so much fear of being judged for our parenting choices, the amount of parent shaming out there is horrendous, but we’re all doing the best we can.

I feel like this post has been a little all over the place, very up and down emotionally. Welcome to my head space when it comes to parenting! I am my own worst critic. I am doing everything I am able to do, and sometimes more than I am capable (which I pay for for days to come). For those who are in the same boat – know you are not alone. I still struggle with my guilt and fears every day, I don’t know if they’ll ever go away, but I do know that at least I’m not the only one going through it. You do what you have to do in the moment, and as long as it’s your best, really, who cares what others think. People who aren’t in our situation will never completely understand how hard this truly is.

I pray for my daughter every day, I thank God for her, and hope she turns out okay in spite of the obstacles we will have to face together. She’s the reason I’m here.

IMG_3221

 

 


Apr
2016

Grieving This Last Year

categories: Chronic Illness, Grieving, warrior

A year ago today, my entire world was about to change forever and I had no clue that it was about to happen. What I thought was a terrible stomach ache was actually my rapidly body dying.

I was brought into emergency surgery after a couple visits to the emergency department. They had to cut me from breast bone to pubic bone so they could see what had happened; the surgeons had no idea what they were about to find. My small intestine had managed to twist itself and had become necrotic. From this surgery they ended up removing a large portion of my small intestine due to the fact that it had died. If they had waited much longer, I would have died along with it.

I was brought out of sedation two days later. The doctor (who desperately needs to learn bedside manner) abruptly told me that “you will never eat or drink again and your quality of life has been severely diminished”. There are no words to describe how I felt. I was beyond devastated. Anyone who knows me knows how I love food. I love cooking it, eating it, hosting people for meals. And I had just been told rather abruptly, that that part of my life was gone.

They didn’t know if I would survive either of my surgeries or my time in between them. There were several times it was very questionable. I ended up needing the second surgery as a result of the fact that I wasn’t getting any better, in fact my health was actually getting worse. During the second surgery, the surgeon discovered that my intestines had continued to die, and it was necessary for them to remove even more than they already had. At the end of it all, I was only left with 5cm of my small intestine and 36 inches of my large.

I was stuck in bed for four weeks, after which I had to relearn how to walk on my own. For every week that you are bedridden, you lose 10% of your muscle mass, so this was quite an undertaking! First time I walked post-surgery I took five steps towards the door, turned around, took five steps back to the bed and then slept for three hours. I had never been more exhausted in my life.

I had to learn about my new body. I had to learn about the consequences of having no small bowel. I had to learn that something as normal as having a drink while eating, chugging water (when you’re literally always dehydrated that is ALL you want to do) or even staying out that extra hour therefore making me overtired would cause me to be violently ill.

I had to come to terms with the fact that I would never go back to the group home work environment. That I can never travel for more than a week at a time because of the expiration dates on my IV nutrition. I’ll never be able to run again. Bike again. Swim in a lake, ocean or public pool again. I couldn’t even read up until last month because I was too fatigued to concentrate on anything longer than a magazine article. And the most painful of all, which I have asked my surgeon about on multiple occasions hoping for a different answer every time, is that I cannot get pregnant again.

I have had to grieve so many things this year, and I still am and probably will be for a long time to come. My heart is constantly aching. I wake up every morning hoping that it was all a horrible nightmare. I so look forward to the day that I can finally accept my fate.

I have had major anxiety all week leading up to today. The one year anniversary of my surgery. My own personal D-day. Today is a lot more painful than I ever thought it would be. I am going to allow myself to grieve today. To spend today in self-pity and mourn my losses.

But tomorrow — tomorrow is day one in my second year of being a chronically ill woman, and I’m going to surmount it. If nothing else, this year has made me more fierce, more passionate, more of a fighter, and more stubborn than I’ve ever been. I will own this new life. I will conquer it. This is my new life. Time to start living again.

unnamed


Apr
2016

Call me Mara: Battling with Bitterness

categories: Chronic Illness

So the two women went on until they came to Bethlehem. When they arrived in Bethlehem, the whole town was stirred because of them, and the women exclaimed, “Can this be Naomi?” “Don’t call me Naomi,” she told them. “Call me Mara, because the Almighty has made my life very bitter. I went away full, but the Lord has brought me back empty. Why call me Naomi? The Lord has afflicted me; the Almighty has brought misfortune upon me.” Ruth 1:19-22

I think we’ve all more than likely had something happen to us that has shaken things up in our life. Whether big or small, there always seems to be an obstacle that pops up, and it always seems to be at the most inopportune time. When everything happened to my health last year, I was mad. Like REALLY mad. After years of struggling with my weight, I had finally lost (literally!) a whole person worth of excess weight — I lost 151lbs! I had met an AMAZING man, we got married and bought a beautiful house just outside of the city, had two dogs and we were blessed with the most beautiful baby girl. I swear I’m not biased! She really is the most beautiful baby ever ;)…. And then literally overnight, my health went spiraling down the toilet. My dreams of traveling, giving birth again, going back to school one day, etc. etc. – they all went down the pooper with it.

It would have been so ridiculously easy to become bitter without even realizing it. Thinking you’ve been dealt the worst hand and making sure everyone knows it can become second nature. Bitterness can slowly and subtly creep in on every aspect of your life and turn the sweetest things sour. Lately I’ve been reading the book Ruth in the Bible, and I feel for Ruth’s mother-in-law, Naomi. She lost her husband and both her sons. She told people to stop calling her Naomi (which means pleasant) and to call her Mara instead (meaning bitter) because she had had a harsh turn of events. She couldn’t see past what had happened and thought God had brought this down upon her. I get it. No, no one died in my life, but a huge part of my life did.

Roughly three weeks after my initial surgery, a nurse was telling me about how she had to come back to work early from her maternity leave. She was complaining that she was sore, it was a long shift, and on and on and on. I looked right at her, and told her I was the wrong person to be complaining to! I hadn’t even walked in three weeks. I was bed ridden, on a ridiculous amount of medication, had lost a significant portion of my organs and was missing my family terribly. I told her she was healthy, had a good job, and she needed to stop whining. In reality I probably (almost certainly!) was too harsh on her. I told a friend about it the next day, and he quickly called me on it. He told me that I can’t let myself become that bitter person because no one will stick around no matter how crappy my situation has become. That truth hit me hard, but that piece of wisdom has stuck with me all year. Not that it’s a bad thing to vent, everyone needs that. But there’s a huge difference between having a bad day every once in a while and being in a permanent state of crabbiness. Through this I also realized that I want people to still be able to come to me without fear that I’ll throw it back in their face. We all have our struggles – big or small, and they are always significant to us. To have someone belittle those issues is never pleasant.

I’m not saying I’ve perfected never being bitter, trust me I’m far from it. I have my days like everyone. There are days where it’s hard to see things in a positive light, but it’s so important to push through and find the sweet in every day. For me, that’s my family and my friends. No matter what kind of mood I’m in, they make me smile. I’ve worked really hard at not being bitter and angry all the time. It is literally a moment by moment struggle for me. To be honest, I am definitely crankier than I was…for those of you who know me, you don’t have to comment on that point! If I’m not feeling well, I get snippy very quickly. But I’ve come a long way from where I was, and I’m really trying not to let my health sabotage my relationships and my perspective on other people’s situations.

Naomi’s daughter-in-law Ruth stuck by her side even though rightfully she could have returned to her tribe. Ruth got married and had a baby boy. Naomi walked through her dark time and there was a light at the end of the tunnel. She was a grandma! Picture Naomi, rocking her grandbaby, tears streaming down her face. She had a rough go, but finally, all she had dreamt of was in her arms. I bet that she could literally feel the bitterness melting away. She had become Naomi again.

bitterness

 

#SheReadsTruth #SheSharesTruth


Mar
2016

I Can’t, but We Can

categories: Community, Family, Friends, TPN

I’m a very blessed woman. I have always had a community of some sort around me. Through every walk of life, I’ve at least had one person to turn to and as I grow older, my support systems have grown – both in depth and numbers. More importantly though, I have come to appreciate them so much more in the last year.

I have my family – my husband and daughter, my parents and siblings, and my in-laws. I also have my friends that may as well be family, those both far and near. These are the people who were the first ones there when I was sick. Waiting with Joe while I was fighting for my life in surgery. Hopping on the first flight to be by my bedside day in and day out. Friends who, over the last year, I have been able to call while in tears because I am so fed up with my situation. I realize not everyone has family and friends like this, but I have been immensely grateful to have these people by my side.

There are so many other forms of community out there though, and take it from me, no matter what you’re going through, you need community. Whether to help you celebrate or grieve different situations in your life, they are a necessary part of it.

Church – I found a great community in my church and I literally had hundreds of people praying for me, feeding my family, and helping care for us in many ways while I was hospitalized. These are the people who have held on to hope and faith and kept praying for me when I just wasn’t able do it for myself.

Online Community – I so love and appreciate the fact that everything is online nowadays. I have been able to connect with people from all over the world who also rely on TPN as a form of nutrition. Through Facebook, I’ve been able to meet a mom here in Ottawa whose daughter is on TPN (and am so looking forward to meeting her daughter). I’ve also become great friends with a woman down in Texas who went through a very similar situation as mine last April and hope that we can one day meet in person. I am forming friendships that I never would have found otherwise. They are under very unfortunate circumstances, but nevertheless, I am very thankful for my new friends.

Being diagnosed with a rare illness makes it hard to find answers (my doctors don’t have answers to many of my questions), and through online forums I’ve been able to ask many questions to others who have been on TPN for longer than I have. The best resources have been through these online communities.

Even just through Facebook and writing on my blog, I have regained contact with old friends who are also struggling with a variety of life’s hardships. It’s interesting how when life seems to dump on you, it can bring people together. Hurting people tend to know how to encourage other hurting people, no matter how different their situations may be.

Support Groups – The last form of community that I want to mention in this post, is support groups. This isn’t necessarily finding a group that is going through something similar to what you are, although it can be, but it’s also to find a group that will uplift and encourage you and that you can do the same for the others in the group.

I’ve been going to a Mom’s group which has brought into my life such wonderful women. Although we all come from different walks of life, it’s 2 hours a week where we can forget life’s troubles and just come for a laugh and a good time. It’s something that I really look forward to going to and again, it’s introduced me to people that I may not have necessarily gotten to know.

I’m also starting a book group with a few others to study Walking with God through Pain and Suffering by Timothy Keller (check him out, I love his books)! This is obviously a very different type of support group than the one I previously mentioned, but I really didn’t want to go through this book alone. I know that it’s going to bring about some very difficult issues to deal with and why not go through it with other people who are also grieving different losses in their lives.

There are so many different forms of community out there. You don’t have to be a part of a big family or a church. You don’t have to be ill or going through a difficult time. But everyone needs a community of some kind. It’s so important and so necessary for the soul.

I really don’t think I could have gotten through this last year without my different communities. They’ve all played their parts and for that I will be forever grateful.

IMG_1561


Mar
2016

Moving On

categories: Uncategorized

Have you ever felt like everyone has moved on after something huge has happened, but you haven’t yet? That feeling like you’re getting sucked down by this enormous event — as if you were stuck in quicksand — and everyone just keeps walking and they don’t look back? They just assume you’re keeping up the pace with them? Well, that’s how I’ve been feeling.

I realize that my being ill will obviously affect me in a very different way than it will affect anyone else. I say obviously, but when someone is in a situation where they are dealing with something of this magnitude what seems obvious to them may not, in fact, be obvious to those around them. At the end of the day, all I want to do is move forward in this journey, just the same as everyone else. Instead, it seems as if I’m stuck in this huge pit of mud and I have no clue how I’m going to get out any time soon.

I’ve had a difficult time finding a balance between trying to live a “normal” life and actually talking about what I’m feeling and what I’m going through. Should I actually talk about what’s happening in my life, or would it be better if I just ‘smile and nod along’ as if nothing has changed? How much do people REALLY want to know about what’s going on in my life when they ask me how I’m doing? I don’t want to lie and say I’m great (an answer I haven’t given in roughly 11 months), but I also don’t want to be viewed as a ‘Negative Nancy’ and always be the one bringing the mood down when I give a more realistic answer to such a simple (for most) question. My go-to answers of late have been either a simple “fine” or “oh you know, just taking it one day at a time.”

I guess I’m finding it challenging, because everyone seems to have gone on with their lives. Meanwhile, I face this every single day. I can’t escape the reality that things have changed. Even if I am having a good day pain and energy wise I am faced with the reality that my life will never be the same. At the end of every day, I still need to head upstairs approximately 45 minutes earlier than whatever time I figure I will actually want to be in bed. That’s about how long it takes me to hook myself up to my IV bag, give myself my injection, take my medication and then after all that, go through my normal bedtime routine. My good, normal day has all of a sudden come to a halt and I have been brought back down to reality.

Just when I sometimes feel like I’m maybe finally getting used to this new normal, something happens to make me realize all over again that my life has been forever changed. Something as simple as taking my daughter to a jungle gym for 1 hour sent me to bed at 6pm that day, and took me 48 hours to recover from – making me realize yet again that my life will never be the same.

Allow me to wrap this up by clarifying that I don’t expect people’s lives to revolve around my situation. I would never want it to be that way – people all have their own lives to live. I just want to get unstuck from the muck, catch up and move on with everyone else.


Mar
2016

I hurt, God hurts

categories: TPN

Something I’ve noticed while walking through this journey over the past few months is that certain people seem to get really unsure around someone who is going through a painful or challenging experience. An experience that someone has never gone through – something that to them is unimaginable often brings out the awkwardness and uncertainty. What does one say to someone during these times?

The majority of people are Encouragers: “Keep your chin up”, “You’re so strong – you can do this”, or “God will pull you through this”. We also have the Silver Liners: “At least it’s not cancer, a heart attack, or insert some horrible ailment that they believe is worse here”. There are the Fixers: “I know someone who went through something similar – they did this and were healed”, “This diet will fix you”, or “Exercise, exercise, exercise!” And, since I’ve always been a straight shooter this last group is my personal favourite – the Realists: “This sucks – but I’ll be here for you and hold your hand”. They allow you to cry it out, and perhaps they even cry alongside you.

IMG_1141

Everyone means well. I really believe they do, but sometimes it’s better to not say anything (in my opinion) than to fill the conversation with awkward niceties because you don’t really know what else to say. One thing you can do is just ask what they need from you. It’s such a simple thing, and if they’re comfortable with you, they’ll tell you.

One of the things that was said to me often that made me upset) was “God is putting you through this for a reason, He’s testing you”. Telling someone this while they are in the midst of fighting for their life is a HUGE slap in the face. HUGE! I 100% do not believe God did this to me. This isn’t to say that I don’t think God will put tests in people’s lives, but there’s a difference between going through a patch of financial difficulty to learn to rely on God and literally being on your death bed. That being said, I still struggle with wondering why God didn’t stop this all from happening. I’m sure I’ll struggle with that one for a while.

I had an old friend message me while I was in the hospital and he brought a different perspective that was beyond encouraging. He said:

I just want you to know that God loves you as much now as He ever has, and the depth of that love is unimaginable. And every time we feel pain, or weak, or frustrated, or depressed, that God sees that and it breaks His heart and He suffers alongside us.

This! This made me think of how I would react if my own girl was hurting or how my parents were feeling while I was laying there in a hospital bed. When your kid hurts, you hurt. When you hurt, God hurts. When I hurt, God hurts.

One last thing I want to share with you today – I remember one night, early on in my hospital stay when my family had gone home for the evening and I was on my own. I was feeling so alone and so scared. I don’t know if it was a dream, a vision, or whatever you want to call it, but I saw/felt God holding me. He was holding me in His arms like I would hold my baby girl. It brought me so much comfort at the time – truth be told, it still does! I knew He was there and that He was caring for me the way I needed in that moment.

When I hurt, God hurts.


Feb
2016

but God…

categories: TPN

Before I get deep into my first blog post, let me summarize for you what happened to me 10 months ago. In April 2015, after a couple trips to the emergency room, I was rushed in emergency surgery after becoming tachycardic and showing signs of major abdominal pain. After my first surgery, they had removed the majority of my small intestine, disconnected my esophagus from my stomach and my stomach from the remainder of my intestines. When I woke up from sedation, two days later, the surgeon told me that I would never eat or drink again and that my quality of life was going to be severely diminished. After a few more days, I still was unstable, and so I transferred to another hospital where there was a gastro specialist. 6 days after my first surgery, I showed no signs of improvement and underwent a second surgery. The remainder of my small intestine had continued to die and the surgery resulted in them having to remove the rest of it along with one-third of my large intestine. Although the first surgeon was wrong and I can eat and drink, I can’t absorb any nutrients and I now face a life of living with IV nutrition, deficiencies and constant exhaustion.

You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives.  –Genesis 50:20

This verse has been what’s gotten me through, day by day, for months now. I still have no clue why this happened to me. I still have my “why me” days, and I’m sure I will for a long time to come. I don’t believe that God caused this to happen to me and I don’t think this “happened for a reason” — and in fact I get insulted when people argue with me on that point. I think this is one of the many moments in life that you just have to say “crap happens”. I do however believe that God saved me. The doctors themselves are baffled that I have survived this. And I hope that because it did happen, that it can be used for good – that my pain is not in vain (whatever that may look like).

Those two words “but God” are a turning point in the verse I quoted above. They represent hope that God can take this horrible situation and use it for good. Use it to help someone else. The hope that I find in this verse is what gets me through my painful mornings and helps me get to the end of my beyond exhausting days. Without hope, I wouldn’t be able to get out of bed in the mornings. I would be drowning in despair. I would not be able to do this without my faith in God and the hope that things will get better.

I definitely still have rough days, quite often actually. But when I have good days, I make sure to make the best of them. I try and stay positive, but I allow myself to have my negative days where I throw fits and yell at God. Eventually the reality of it all will become normal and my rough days will be fewer and farther between as time goes on and with God’s help.