Sunday, January 19, 2014

Ambition, Marfan & Pain...

Sunday, January 19, 2014

Again the best laid plans of mice & men...

I had planned to publish this blog in August of 2013, but if your are one of those that know me and how busy my life is now you can understand why it got put on the back burner. I'm finally going to try and get it done. 

There have been many discussions in the Marfan groups we are in as well as on the newly updated Marfan Foundation (formerly the NMF) pages regarding Marfan syndrome and pain issues so it is a very hot topic. As with many chronic debilitating illnesses pain issue are a major concern. I'm sorry to say our family has not escaped it's grasp.

For those who were diagnosed with Marfan in their youth and had to undergo early intensive treatments and surgeries, they have learned from an early age what their limits are and how to stay within them. For those who were diagnosed in their adult years dealing with how pain affects their daily life can be quite a different experience. 

The majority of our Marfan population with later diagnosis have had active lives for many years so increasing pain is a challenge that can change the course of activities enjoyed, how they approach their job, and how to learn to live within their limits. 

Although I can get a bit lazy from time to time I generally have been one to keep going & push myself through my duties no matter what. Minus 20 degrees below zero & the tire was flat, I was out there changing it (it took an hour & a half due to cold but I got it done). Car broke down 10 miles out of town when I pregnant on a less traveled road? I was hiking back to the main road to get help in the blowing drifting snow. Double shifts (16 hours days) working in direct patient care in a busy nursing home? Yup, 2-3 times a week sometimes. Thirty out of 31 day straight through working graveyard at a convenience store with 1 day off work? Yup, did that too. 

Ahh... those were the days of my youth. Yes, I was in pain, but not knowing I was undiagnosed (and that goes for the Hubby too as he was also undiagnosed & working those double shifts right there with me in the nursing home) we just figured, we're young, we can handle it, just push through it...

We continued to push through even into more recent years even as this condition has really started to truly take it's toll. The Hubby was taken down first after his open heart surgery, although his has been less of pain issues and more of fatigue, but even in the last couple of years he has really started to feel the pain too. It's been hard to watch as he has had the ambition to get out and do more, but the reality of how much this condition can limit everyday activities, well it's hard to see.

Get getting back to the title, "Ambition, Marfan & Pain". I was having a conversation the other day at work about where I would like to be professionally in the next 2-5 years, and I couldn't answer that question. 

I am well into mid-life, at the point where many of the Marf's have already had heart surgery or are getting close, and luckily my heart is still in pretty good shape. I don't see any reason why I can't keep pushing upwards in the business world if my heart is any indication, but the pain from the joint issues, well that's a whole different matter. There are some days just getting up and getting moving can seem like a major production, and once I do make it up & out some of those days just keeping the pain at bay just to get through the day is it's own challenge. 

Then there are those days when getting moving is not so bad but sometime in the day the pain hits full throttle. And when they come is anyone's guess. And therein comes the reason the I couldn't answer the question. With increase position comes increased responsibility. With increased responsibility comes the reality that more & more people will depend on you and when you are unable to fulfill those responsibilities it has a not good trickle down effect. Do I really want to put others in the position of not being able to do their job because I can't do mine?

My drive, my ambition, it's definitely still there, but tempered now that I have to balance what I want to do with what I can still do. Still, I am so grateful I can still work and still have opportunities that I can pursue if I so desire, and my heart go out to those in the Marfan community who are not so lucky. I look up to you my fellow Marf's, for as much as I get down sometimes, your strength to continue fighting through some REALLY bad pain, well I don't know how you do it. My hats off to all of you! <3

(P.S) Please keep the family of Kathleen M. in your prayers. She passed away during surgery this week to repair her dissected descending aorta. Our prayers go out to her family... :'(