Category: Community

A Glimpse Into Parenting With A Chronic Illness

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Parenting is hard. In fact, I’d go ahead and say that it’s one of the toughest jobs out there. You don’t get much of a break, if ever. It’s a 24/7 job, unless you work outside the home, and then you get to leave for a few hours to do another job, and then have to come back and continue being Mom or Dad or sometimes both. They are your bosses, you can’t reason with them most of the time, they dictate everything you do, and you don’t get paid. The lives of these tiny people are completely in your hands, and not only do they drive you absolutely up the walls, you have never loved someone to this extent and to this degree in your life. A love so strong that it can hurt.

Let’s not forget that everyone out there, including those without children, are self-proclaimed parenting experts. Doesn’t matter what you do, you’re being judged on your parenting. Co-sleeping, breast feeding, screen time, crying it out – whatever it may be, it’s controversial and someone has an opinion about it.

Having a chronic illness is also a full-time job. You’re constantly exhausted, in pain, your schedule is dictated by your bathroom breaks/medication schedule/sleep patterns (or lack thereof)/appointments.  It is a harsh reality out there for a few of us. And to top it all off – 99% of the people around you don’t get how truly hard it is to be chronically ill.

Now let’s mash these two things together, being a parent and chronically ill, and see if you can imagine what it’s like.

I’m currently a stay-at-home mom to my beautiful, intelligent, mischievous 3 year old daughter. She’s stubborn as they come (yes, she gets that from me) and she tests my patience every day. I didn’t choose to be a stay-at-home mom, not that I don’t love being at home with her, but the turn of my health back in 2015 is what dictated that I can no longer work outside of the house. I am to be at home, all day, with my daughter and my ailments.

Let’s see if I can give you a glimpse into what it’s like to be a chronically ill, stay-at-home mom. I have almost no energy. Standing for more than 10 minutes at a time takes a lot out of me. When I go out with my daughter to any sort of activity, I have to make sure I have nothing else planned for the day. It takes absolutely everything out of me. I don’t have energy for all these play groups. Most of them are during her quiet time, which I desperately need, so I end up not going to them. I need to be sure that any activity I take her to, there’s seating for me, as I can’t stand for long. Any sort of exertion and I’m done for the day. These are things I have to plan for and think about, where as it wouldn’t even cross the mind of any healthy parent.

I’m not the most patient person to begin with. I’m a lot more patient than I used to be. I think part of that is I’m married to the most patient man in the world, and with having health issues and having to deal with doctors’ offices and insurance companies, you kind of have to learn to be more patient. The thing is though, it’s really hard to remain easy-going when you’re in pain and so beyond exhausted and you have this little person who continues to say no, continues to not listen, and starts to get upset because they’re not getting their way. I HATE that I get so unbelievable cranky during these moments. I beat myself up constantly because of that. I don’t want my daughter to think of me as a curmudgeon, although really, that is what I’ve become.

The other thing that I have really struggled with is the judgement that people have on parenting types. I realize that the articles people post on Facebook aren’t directed at me, but how can I not take it personally. The big school of thought going around right now is that screen time is equal to doing heroin. My daughter gets two, two hour quiet times during the day and she gets access to one of our old phones. We monitor what she watches and plays and there are only age appropriate apps on the phone of course. Here’s the thing though, if she doesn’t get those two quiet times, it’s me that’s affected. And it’s not just an “I need my alone time” selfish reason. No, this time is absolutely necessary so that I don’t make myself sicker than I already am. I need to lay down during those times. Most parents will clean and prepare supper while their kids nap or have quiet time; I lay down and rest otherwise I crash, and when I crash, I crash HARD. So you’re telling me that because of my illness, my kid isn’t learning as much as she should and this habit is equal to a drug addiction? How do I not take offense to that?

I have been extremely blessed to have people around me that have helped take care of my daughter. My mother-in-law comes once a week so I can go to appointments and lunch dates (which I have found is equally as important to my health as anything) without having to drag my daughter along. I have friends who know my health limitations and will help chase after my daughter if need be. But not everyone is as fortunate as me. And it’s hard to ask people for help, especially when they don’t realize how hard it is on you. I don’t look sick. Unless you’re in my extremely close circle of family and friends, you don’t know how truly sick I am because I won’t let you see it (I look NASTY on my bad days!)

I feel like this post is a lot of venting, but here’s what I really want to get across. If you have a chronic illness and you’re a parent, you’re not alone. Both of these things are insanely hard on their own, and put together, it’s by far the hardest thing out there. You can argue me on that, but unless you’re living with both, don’t even bother. And if you’re not living with both or either of these, please educate yourself. Help those around you who need it. Even just a text saying “I’m here for you”. A visit with a coffee! An offer to babysit so they can go to appointments. A hug when you see them. Both of these lifestyles are very isolating. Just imagine what it’s like to have both at the same time. The biggest thing you can do is be there for that person.

With all this being said, I would never, ever change my status as a mom. In fact, we want to grow our family, because to me, it really is worth it. It’s hard, but man when that kid looks up at you with all the love in their eyes, you realize that all the pain and exhaustion is 100% worth it. I would gladly throw away the chronically ill portion of it all, but that won’t be happening, so if I have to be a mom paired up with being this sick, I’ll do it. And I’ll do it to the best of my abilities. But again, know that YOU ARE NOT ALONE!

Let me say it one. More. Time.  You are not alone!

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Painless Fashion – Holding On To Your Style While In Chronic Pain

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When picking out your clothes for the day, have you ever needed to stop and think about how much pain they will cause you? You might think about what shoes you might wear depending on how long your day will be or how much time you’ll be spending on your feet. But what about just your jeans? Or what coat you’ll wear? The fit of your shirt?

During the winter months, this is what I need to think about every day. My skin becomes so sensitive during the cold months that even a pair of jeans becomes intolerable. I had to go and buy new clothing this winter just so I didn’t have to wear jogging pants every time I left the house. I had to decide whenever I went out whether I wanted to be cold or in pain because the weight of my winter jacket caused me too much pain.

I wear only comfy clothes while I’m at home, but I like to look good when I leave the house. I don’t mean that I get incredibly fancy, but I like to wear fitted jeans, makeup, and I do my hair. It got me thinking that I should do a blog post about how it is possible to be comfortable, in as little pain as possible, and yet still be fashionable! Thankfully, leggings and tunics are very à la mode right now, but it’s possible for those of us that are in chronic pain to still get our unique fashion sense in without feeling like a bum all the time.

So I enlisted some help from two other of my Spoonie Sisters.

Here’s Sarah! Sarah likes to say that she has Alphabetitis. Her diagnoses include Myalgic Encephalomyelitis, Rheumatoid Arthritis, and Neuro-endocrine Tumors, to just name a few from the extensive list of ailments she battles with. Sarah and I have known each other for a few years, and our friendship has become stronger as we are able to relate to each other. We know that we can cancel on each other at any time and the other doesn’t get upset. We get it. Sarah pushes herself as much as she can to have a fulfilling life; giving everything she has to her passion of art and food, and to her husband and two beautiful girls. Seeing her face beam as she modeled these dresses was just amazing! We don’t get to feel this good all that often because we’re in constant pain, but one afternoon of feeling like a star just made it all worth it!

ab(1of1)-11Amaryllis Dress by RAMONALISA

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Wonder Woman Dress by ANNIE 50

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Ombrelle by CHERRY BOBIN

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Bicicleta Dress by RIEN NE SE PERD, TOUT SE CREE

Catharine has recently been diagnosed with Ehlers-Danlos Syndrome. This is a connective tissue disorder which leaves Catharine’s joints loose, causing them to dislocate often. Her muscles are also constantly tense, compensating for her joints’ slackness. Catharine has moments where even being touched is too much to bear. Every time I see Catharine, she’s got a huge smile on her face. Although I know that she has some unbearable days, Catharine’s joy radiates through her and it’s hard not to be infected by her attitude when she’s nearby.

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Joe Dress by FIG CLOTHING

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Daiquiri Reversible Camisole Bicycle Print by RIEN NE SE PERD, TOUT SE CREE

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Annabelle Dress by 3RD FLOOR STUDIO
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oa Cardigan by FIG CLOTHING

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Abela Long Camisole T003L by MOOVMENT
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akura by RAMONALISA

And then there’s me! I have had Short Bowel Syndrome for nearly two years. I have a central line going into my chest that my IV nutrition gets pumped through five nights a week. Now you may ask, how in the world do my bowels affect the sensitivity of my skin and the stiffness in my joints? I don’t actually know why, but my guess is that this is my body’s way of reacting to the trauma that it endured back in April 2015. The day after shooting these photos, I felt like I had bruises along my spine, I was waddling around the house like I was 9 months pregnant, and literally every inch of me hurt.

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Capitaine Stripe Tee by CAMELEON
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erveza by RIEN NE SE PERD, TOUT SE CREE

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Take It Easy by ANNIE 50

ab(1of1)-9Archipel by CHERRY BOBBIN

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Memories Dress by ANNIE 50

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Babette by MOOVMENT

So then why did I put myself through it? Because doing this photo shoot made me feel good about myself. I felt gorgeous! We had so many laughs. We enjoyed ourselves. For one afternoon, we could forget about our illness and truly enjoy ourselves. And these moments really are few and far between when you’re constantly fatigued and aching.

I also wanted to show the world that it’s possible to be chronically ill and fabulous! We three ladies are proof of that.

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Thank you so much for the wonderful contributions of the following:

 

Clothing – Flock Boutique (Store is in Ottawa, Canada. Everything shown on this blog and more can be found on their website. Direct links are embedded in the pictures.)

Photography – Vintage Bow Photography (Ottawa, Canada)

Makeup – Make-up by Julia Sangalli (Ottawa, Canada)

 

I couldn’t have done it without any of you!

Discovering My New Self Since My Diagnosis

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Through every stage of life we’re trying to figure out who we are. What is our role in society, how do we fit in, who are we really? What side of us do we keep to ourselves, show to those closest to us, what do we show to the rest of the world? We are constantly evolving. Jobs change us. People change us. Age changes us. But most of these changes happen gradually enough that we adapt without any thought. What happens though when something comes along and changes everything rapidly? Everything about you needs to accommodate for your new reality.

Since becoming sick, I’ve had to stop working, my social life has changed dramatically, and my relationship with my husband has changed. I no longer work out, my energy level has changed dramatically. My months are filled with appointments instead of coffee dates. I sport an IV line on my chest which everyone stares at, have a handicap parking pass, and have a walker for my really rough days. I’ve made new friends, lost old friends, and grown closer to friends that really stuck by me through all these changes. The list goes on and on, but name something and I can pretty well guarantee that it’s changed in one form or another.

I’ve been saying it for the last year and a half, and I’m sure I will be saying it for a while yet, but I miss the old me. I miss my old life. I was full of life, joyful, positive, loud and opinionated. I loved going out and I hated staying in. If I had an afternoon free, I would either be out being social or working on one of my various projects.

I’m quiet now and much more reserved. It takes a lot of energy to be full of life. I’m not surrounded by people all the time anymore, partly because of not working at the moment and also because going out takes a lot out of me. I find it really difficult to follow conversations now, especially in the evenings when I’m really tired.

How do I go back to being who I used to be? Is it even possible? With my diagnosis and disability has come wisdom and an empathy that has helped me reach out to people. But would I give it up to be the old me again?

I’m sitting here trying to put into words who the new me is and I’m having a hell of a hard time doing that. I think I need an “Under Construction” sign to put on me for the time being. I don’t know who I am right now. I’m still trying to figure out how all of this plays into my new life.

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Yes, I am a mom, a Christian, a wife. But I’m talking about more than labels right now. I’m talking about what knits me together. What words others would use when describing me.

Ideally I’d like to eventually piece who I am back together. Some of my old self and some of my new self. The joy and thirst for adventure I had with the wisdom and vulnerability this new life has taught me. I’m still trying to figure it out, it may take time, but I want people to see the joy and the shine that used to show in my eyes.

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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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