Tag: moving on

Grieving This Last Year

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.

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Moving On

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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