Looking Back – Day 107 – Home Sweet Home

Today is Day 107 of the Art Apple A Day Retrospective – for information on the project click here.

Day One Hundred Seven – January 15, 2010

Looking back 10 years ago today…

I didn’t cancel my plans to celebrate a friend’s birthday!!!

This was a success especially after an extremely long day of travel. What so many don’t understand about one of the big tolls on the lives of people trying to manage a life with a painful disease is that plans are tricky things. We have the best intentions and sometimes we can mentally push through and attend the event but there are times when we just don’t have the strength to push through the pain.

I remember attempting to be at my cousin David’s wedding in L.A. before I was diagnosed and being in so much pain I couldn’t function at all. I was there physically but that was about it. Thankfully the wedding and reception were in the hotel we were staying in so I was in bed right up to the point they walked down the aisle. I vividly remember sitting holding Doug’s hand and barely keeping the tears from falling. The threatening tears were from excruciating pain and I was sad I couldn’t enjoy the happy family time but it was also the unspoken deep fear that I had no ability to control my life that felt ripped away at such a young age. The day before my family pushed me around an amusement park in a wheelchair because I was trying to be ok for the wedding.

And, in one moment of trying to be normal and enjoy the day, I went on a ride. That ride sent my neck into one of the worst flares I ever had.

And so there I sat for 30 minutes gritting my teeth, squeezing Doug’s hand, and all I could really think about was getting back to the room to lay down take the strain off my neck and knowing that when I did, the pain would still be there but at least I’d be able to release my jaw and not be around people and have to smile. I missed all of the reception except for about 15 minutes to eat a bit of dinner and have a dance with Doug. A dance that was painful. How horrible these memories are. I don’t want to relive them but I want to document them and to share the horrible moments right along with the wonderful moments on other posts here and how at this point in time I’m thriving!

Those years with moments that are forever etched in my mind are many. This is just one story. The “crisis years” as I call them are the years before a diagnosis and they are filled with living this way. Even as we find our way to an eventual diagnosis and hopefully some effective treatment, these years were so challenging that they tend to scar deep trauma into our minds and ability to move forward. We are in a constant state of the “what ifs”

What if I do this activity and I end up in pain?

It taints so much. It feels like loss, over and over and over. I’ve been fortunate to have such great success with the biologic anti-TNF medication called Remicade. I’ve had 14 years of doing quite well and getting back to a somewhat normal life but somewhat normal still includes concessions, planning, rest, flares, skipping events, and missing out on doing some things that I want to do that physically is a risk I’m not willing to take because of those moments and memories like my cousin Dave’s wedding. If you’ve never experienced that level of pain count yourself very very lucky, it is life changing.

So, if I cancel plans, there is a reason and I wish it weren’t the case. And if I am able to be there I might be fine or I might we struggling with pain that I’m just doing my best to manage. You can ask, but you don’t need to either because I really just want as normal a life as possible. If you know me well, you can see how I am by just looking at my eyes. The answer is there… if you look.

On this day 10 years ago – I was home, and I was there!!!

To see my original Day 107 post ~ Home Sweet Home ~ from 10 years ago click here or on the image above.

And the story will continue tomorrow…

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