Category: Family

Recovering from the Holidays

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The holidays are tough on anyone. Even if you’re in tiptop shape, you’re tired after this crazy time. There’s so many events, a constant flow of people, and your schedule is completely turned upside down. There is no normalcy during this time of year. Imagine if you will, how much more the holidays takes its toll on someone who already gets exhausted by just surviving on an average day.

I love Christmas. Always have. And this year especially I was excited because I have a two year old and Christmas is finally becoming magical again. We started prepping her for Santa in hopes that she wouldn’t cry when she saw him (didn’t work by the way), but every morning she would find our stuffed Santa, grab him, hug him and yell out “Ho Ho Ho!” She then would ask for the tree to be turned on (or in her words OFF! OFF!) and proclaim that it was so pretty. This was our routine every morning and I looked forward to it every day (almost as much as I looked forward to my morning coffee).

Behind my excitement for Christmas was a sense of dread because I knew how exhausted I’d be at the end of it all. Our family planned quite a few events to go to and I could only hope and pray that I could make it to them all. Thankfully I actually did better than expected, not even getting sick once, but I woke up every morning with a chronically-ill, Christmas hangover (this is really the only way I’m able to describe how I felt every morning). Was it worth it? You betcha! But it still made every day hard.

It’s January 3rd now and the events are finally over. It’s been freezing rain here all day which is just encouraging my plans for today – to do nothing! We all need a vacation after the holidays and that’s what my day is today, a little vacation. My daughter and I are having a pyjama and Paw Patrol day. She is just waking up from a beautiful two hour nap and I’m sure she’ll be ready to go back down again in a couple of hours (it’s now been a couple hours and she’s really not happy that I put her down for nap #2). Both of us are exhausted from the last couple weeks.

I guess all I’m trying to convey in this post is that although I know that certain events in my life will take literally every bit of energy out of me, it’s worth it sometimes. Most of the time actually. I’ve loved all of our extra family time. I loved watching my daughter tear open her presents. I’ve loved all the delicious food (but not the consequences of said delicious food). The traveling was hard, the late nights were even harder, and the dehydration from it all was the hardest. I’ll be recovering from all this for at least the next week, realistically probably two. Maybe even three. And even though I had my ridiculously cranky moments because I was so tired during all of it, the holidays was still a very magical time this year; something being ill thankfully hasn’t stolen from me.

I may be late in saying this but Merry Christmas, Happy Holidays and I hope you all have a wonderful 2017!

Cheers!

For the month of January, I will be doing My Mighty Month challenge. A lot of these posts will be on my Facebook page. Please click the link below to follow me there!

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What I Post On Facebook vs My Reality

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We all know that what we see on Facebook isn’t always what exactly happens in real life. Everybody posts the good stuff. They want to show off, show the progress that’s happening in their lives, and boast the highlights of what’s happening in their life. Well, here’s the inside scoop of what my reality actually looks like vs what I like to show on Facebook.

When I’m Put Together vs My Everyday “Sick” Look

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Anytime I go out in public or have people come over, I make sure I look good and 9 times out of 10, I post a selfie from that day because I feel good. I feel like garbage 99% of the time, no point in giving people a visual of what I’m actually feeling on my down days. I’ve heard “but you don’t look sick” so many times. Trust me, if you could sneak a peek at me while I’m at home alone, you wouldn’t be saying that! And there’s a reason for that – I use a lot of my energy to look good because it helps me feel good. So why use up that energy on days that I’m A. not feeling well and B. sticking around home anyway. I’ve limited the audience to a very select few who get to see me on my terrible days. It’s not how I want people to see me.

To get ready for a day out or for a visit takes an insane amount of energy. Any of you who deal with a chronic illness or pain totally feel me on this one. I can’t simply jump in and out of the shower and get ready quickly. My routine takes a long time as I really need to pace myself. Simply standing in the shower for more than 5 minutes winds me – forget the days I need to actually shave my legs! I’ve needed to put a chair in the bathroom to do my hair and makeup. I even get tired holding my arm up as I dry my hair. My outfits are carefully chosen, making sure I wear something that flatters me as my surgeries have left me with many lumps and bumps. I always need to rest whether that be just sitting down or sometimes even laying down, as this entire process exhausts me.

Some of you may say “well why waste so much energy?” I’ve come to discover, for myself anyway, that if I’m always in my pyjamas and not put together, I feel sicker. I do try to at least get dressed on days that I stay in, it doesn’t always happen, but even just putting jeans on helps to change my mindset from being ill to just really tired.

Going All Out For Projects vs How I Pay For It The Next Day

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I’ve always loved projects. I love learning new skills. And although I’ve had to put many on the wayside because of my energy levels, I still need to indulge in them from time to time for my own sanity, even though I know that it’ll cost me greatly in energy.

Just the other day, I decided to try my hand at making marinara sauce. I got the recipe from an Italian, so it’s got to be the real deal, right? The amount I made came out to about 35 litres which was way more than I anticipated, but we’ll be stocked for pasta and pizza sauce for a while now. It was a delicious success! Thing is, three days later and I’m still exhausted from it. I loved making it though, even if it means I’m out for the count for the next week. I love the aftermath of a finished project – is there anything better than seeing a task be completed?

I knew that this would tire me out, but it still surprises me when I get knocked out for so long from something that in the past a good night’s sleep would’ve cured.

Going Outside With My Daughter vs The Rest Of My Day With Her

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I like to share a lot of pictures of my days with my daughter. Although the plan was to go back to work once my maternity leave was up but plans changed when I was diagnosed with Ultra Short Bowel Syndrome. I am very much enjoying the extra time I’m getting to spend with her, but any of you who have spent any amount of time with a toddler knows that they never stop. Like ever. I wish I could do more with her. I wish we could spend more time outside and on the play structure. But after 20 minutes max of playing outside, I’m tapped out. I physically am unable to continue. The rest of the day is spent watching her play from the comfort of my couch.

I’ve tried play groups, but chasing after her for 2 hours is impossible. I’ve looked into swimming lessons, but I can’t go in public swimming pools as it could cause me to get an infection. We have most of our play dates here as I know the environment and I can more or less control it.

Thankfully our living room closes off from the rest of the house, so we spend our day in there. Me on the couch and my daughter playing with her toys. She is a very independent child and is perfectly content playing on her own. I really wish I could keep up with her, but it’s just not possible.

Events I Go To vs How I Prepare Leading Up To The Event

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I love sharing pictures of events I get to go to. It gives the illusion that I do have a life sometimes. What you don’t see however is how exhausting the smallest event can be for me. Each incapacitating me for at least a couple days afterward.

Being chronically ill has changed pretty well everything in my life, but I still do my best to make it to events such as concerts, weddings, trips, etc. I do however have to plan ahead for them differently than I would have previously. I went to a concert back in July and literally stayed in bed until supper time so that I would have the energy to stay at the concert as long as possible. At weddings. I unfortunately don’t have the energy to dance anymore, and I miss it, but I stay as long as I can and at least try to enjoy the dinner. And my trips so far are planned around leaving the hotel mid-morning, napping for 3 hours in the afternoon, and returning by 8pm for the night. None of these are ideal, but if it means I get to enjoy these moments, then it’s what I need to do.

My Family vs My Family

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I brag ALL THE TIME on Facebook about my family and it’s the same in reality. My husband is the most loving, caring and supportive man I could’ve ever asked for. Those pictures of my daughter always smiling, that’s pretty well how she always is. My family brings me so much joy and happiness. They keep me grounded and they give me hope for the future. There’s no point in showing it any differently on Facebook because they’re already pretty freakin’ great!

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4 Things I’ve Learned When I Realized I’m Not Invincible

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Unless you’ve faced death early in your life, most people believe themselves to be invincible, believing they won’t have to fear death until they are much, much older. The majority of people my age have only experienced death from afar – a friend of a friend, a grandparent, a long lost relative. But for the sake of this post, when I’m talking about facing death, I’m talking about a first hand experience. Having stood toe to toe with death yourself.

Usually the certainty of living until you’re closing in on your 90s is something possessed by those younger than their mid 30s. The thought that nothing will happen to them. Tragedies are only in the movies, far off lands and only found in the news. With this view of our lives, I find comes two responses. The first is that death won’t find you, and therefore you can take on the world and test your luck. You can do anything and everything and hope that the worst that’ll happen to you is a broken bone or two. The second response is that you have plenty of time to get things done. Things constantly get put off. You continue to dream, but you’ll find a better time to live those dreams out. Focus on the here and the now.

The latter form of thinking was me. I’ve always been a dreamer, but felt I had to be practical first. Things or people always got in the way. Excuses upon excuses kept building up and my dreams kept getting pushed to the backburner.

Then the unthinkable happened. A freak accident. My small intestine twisted up and became necrotic, and if it had not been caught when it had, I would have died. I was so ill going into the emergency surgery that I didn’t even realize what was happening. It was when I was going into my second surgery a week later that I had realized how serious this all was. I was laying on the surgical table, and my surgeon came to talk to me before they put me under sedation. I will never forget that moment. Looking up at him, I could see it in his eyes. The sadness, the hopelessness. I could tell just by looking at him that he thought that I wouldn’t make it out of the surgery alive. Tears rolling down my cheeks, I told him that he needed to make sure that I survived; I wasn’t ready to die.

My view on life has changed since those days, and I really want to share with you guys what realizing that I’m not invincible has taught me.

#1 – I’ve had to give up on some dreams, but I can form some new ones. We all dream. We all want big things for our life. I’ve had to give up on some big dreams: going scuba diving, running a 10k, getting pregnant again, living in Africa. Some dreams are easy to give up, and others are ridiculously hard. My heart still hurts, and may never stop hurting, that I can’t get pregnant again.

I’ve also come to realize that I need to start taking advantage of the life that I do have left. I’m crossing off things on my bucket list that I’ve put off for so long. Ok, so I may never be able to go scuba diving for fear that I’ll get an infection from the bacteria in the ocean, but I’ve had other dreams brewing for a long time. I’ve had the opportunity to cross a couple off my list already this year that honestly, I would’ve put off even longer if I hadn’t become sick. I have to plan for things differently to make sure I don’t get too sick, or plan that I do nothing for a couple days after knowing that I will be very sick. But, at least I know to plan for them. Life looks different now, but I still have to take advantage of my time here on earth.

#2 – I look at my loved ones in a very different light. I do my best to invest in the relationships that have always been there, and putting more time in relationships that I want to see grow.

I almost made my husband a widower, my daughter motherless, and my parents bury their only daughter. These are things that are always close to my heart. Not as something that devastates me, but as a reminder to really prioritize these relationships. I say sorry when I’m being a jerk, I never leave the house without saying I love you, and I get in all the hugs and kisses that I can. You really never know when the last ones will be.

#3 – I’ve learned to not fear death. I have a strong faith in God. I know that when I do die, I’m going to Heaven. But I really do think that if God saved me from dying, there’s a reason for it. I’ve come to the point where I’m not scare of dying, but more so scared of leaving people behind. I think that’s what helped me be so strong and fight for my life, the people I knew that were waiting for me.

#4 – Now I’m learning to not be afraid of living. I think this is honestly one of the hardest ones for most of us who live with a chronic illness. I said earlier how I’m working on crossing things off of my bucket list, but those events only come a few times a year. Those are the big things that you plan for. When I talk about living, I talk about the day to day life which is so hard for us to face. I guess this point has less to do with realizing that I’m not invincible, but embracing my life with chronic illness. I’ve come to realize that life is ridiculously short and I don’t want to waste it sitting at home all the time. Thing is, if I leave the house, I will pay for it later that day, the next day, and sometimes even longer. But – I keep having to remind myself it’s worth it. I sometimes literally have to force myself to go out, even if it’s just for a coffee run. I’ve made a goal for myself to make plans with friends at least once a week. I never regret making plans, even if it knocks me out for days. I can’t live the rest of my life cooped up in my house, no matter how terrible I feel.

Yeah, being faced with death sucks, for anyone, but we also have a little nugget of wisdom and insight on life that not everyone gets. Take advantage of that and LIVE.

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Dealing with Guilt and Fears as a Chronically Ill Mom

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??)

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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.

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I Can’t, but We Can

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.

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