Tuesday, June 24, 2014

Changing the Pace...

Rush, rush. Hurry, hurry. Must keep up with the pace of life...

For all my life I have been on that kind of pace. Sure there have been periods when life slowed down a bit and there was little to do, but before long the pace went back to a fast clip, demands and obligations creeping back in to intrude on the down time. And as much as I sometimes bemoaned the many things I was juggling, I really felt like I was at my best when I was that juggler with all the plates spinning and balancing them with rarely one dropping.

Something changed in the last 5 years, something I did not expect to see until many years down the road, I am slowing down. Some of it I know is depression over the death of my youngest grandchild and estrangement of one of the most important relationships in my life. Some of it are other causes I will not go into here. But most of it is my body which is betraying me and I for one don't like it.

I've had minor physical issues for as long as I can remember. Foot deformities in infancy resulted in corrective procedures. Always a klutz, I had my fair share of issues because of that. Minor long term upper respiratory issues meant I could count on getting a bug pretty regularly.
Nothing that really slowed me down for long. Back on my clarinet a week after having all 4 wisdom teeth extracted because state competition was coming up a week later and I had to practice. I was into my 3rd week of undiagnosed walking pneumonia while in college before I finally broke down and went to the doctor.

The slowing down I'm going through now is the slowing most folks don't start to deal with until their 60's, 70's or even 80's. I am not yet 50. I know I'm not alone as hear a lot of our older Marf's talking about how they are feeling the effects of their condition at an age younger than non-Marf's, but how much is truly Marfan related? That's a good question.

I look at my Marfan husband. He started this type of slow down years ago after his aortic valve & artery replacement surgery. That makes sense. I see that regularly in the Marfan groups I am in. Some folks actually do better after  surgery, but a big number are also just not able to get back to anywhere where they were before hand. I have not had heart surgery so I can't really look at that as a factor.

What happens when Marfan tissue ages? Since the average lifespan
for many years was little more than half of that for the general population, there were no serious studies on the effects of aging in Marfan so no one can say for sure. The good news is the researchers are finally looking at this aspect so we hope to have answers very soon...

My Hubby & I are lucky, slowing down
gradually, having some time to adjust. Just this weekend a young athlete at the peak of his prime, a newly diagnosed Marf, has suddenly had to face what it took us years to adjust to... to change gears and suddenly STOP doing the very things he planned to do at this time of his life... He is suddenly facing a very different future, but it does not have to be a bad one.
Our Double Marfan family have been keeping him in our thoughts ever since we first heard. There will a lot of changes and adjustments, that is normal. He is heartbroken, it showed in his reaction. Understandable.

Isaiah Austin's dream to play in the NBA may be gone, but he is finding other ways to dream again...  :-)

If there was one piece of advice we could give, it would be: Stay close to your family and faith, listen to your doctors & you will do well! God Bless you Isaiah Austin!

Check out how
Isaiah Austin is reaching out to help The Marfan Foundation, and through them, ALL affected by Marfan Syndrome!

Isaiah Austin says he is "Letting God lead the way. Become a part of my story and support the Marfan Foundation. #DreamAgain" - Isaiah Austin

Please check out Isaiah Austin's "Dream Again" Limited Edition T-Shirt in support of the Marfan Foundation!


#Marfan #MarfanFoundation #NBA #Isaiah_Austin

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... :'(