Month: March 2016


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.

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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.

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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.

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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.

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