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Flat Out Exhausted: Day 1

Chi-townI’m in Chicago for a 4-day conference on leadership and loyalty. Everyone attending is in some way connected to a website or social media, many of us own our own companies. Some own empires worth millions of dollars. It’s a very exciting group of people to surround yourself with to show everyone, even the most beginner of the group, one thing above all else: you can do it, too.

Everyone speaking at the event began somewhere. One, if not the, most successful speaker in attendance was working in a retail wireless store as recently as 2006. He now commands a daily speaker’s fee that blew my mind the first time I read it. Is that my goal? Yes, and no. I want to connect with people and help them, just as I have been. If that happens to bring me success of that level that equates to financial gain in order to secure a future for my family should something happen to me, that’s great, too. One thing will never change: I am a giver who gives until it’s stupid. That is my nature, but I’ve learned to be wise with my gifts in the last few years, and I look forward to the opportunity to

What is most exhausting about this weekend is that they talk your ears off. Imagine being able to have a conversation with one of your role models. What would you talk about? What would you ask? Let’s explore that after I indulge myself telling you about my day first.

Apple StoreI woke up at 3am to get to the airport for a 6:50 flight that took me an hour back in time, only to start a gauntlet run. I had a client meeting a good 15 minute walk away, carrying my bag and camera. Then they drove me to my next client, and I took the bus back to the hotel… only I had to walk the last 1/4 mile in the 41 degree rain with 20mph winds. Then, I got to my room to charge my phone before our evening social… only to realize I left my cable at home hooked up to my keyboard. I schlepped 0.6 miles each way to the flagship Apple Store with the glass apple window to get a new cable. Cold and wet, I had 20 minutes to charge my phone.

Back to my point… Don’t reserve yourself for mediocrity, let alone failure. What makes the difference is determination, passion, the intangibles of life that you can’t teach, but you can certainly learn through experience. When everything stops being seen through a “they have what I want” lens, you will start to see your own successes. I still forget that more often than I care to admit, but I’m going into tomorrow with that from the start. Sure, I do want what they have, but I’m darn proud of where I stand today to be in this group of people working to make our value propositions to everyone even better.

Don’t let having CF stand in the way of anything you want that you should be able to do in your mind. Be reasonable, but think big and make it happen.

Stay tuned for more exhaustion and insight. The insight may have to wait until I return, decompress, and edit hundreds of photos, but they will come, and you will like what is in store.

I leave you with the only view of the Willis Tower I’ll have since the weather here is not going to make the $17 ticket to the top worth $2.

Willis Tower


Living With or Avoiding Anxiety

Nail-biterAnxiety is a common symptom of CF. There is anxiety from finances, whether or not something is going to make you sick, if you can get the meds you need in time and under budget, or if you can make it out of clinic without IVs or in the hospital.

I think there is a line chart that depicts anxiety in the life of a CFer. It starts low as a child in a healthy home environment, so long as their parents don’t pass on the anxiety they had when they found out. However, it’s high if you’re diagnosed later in life, but then diminishes once you realize it’s not the end of the world. Anxiety enters when trouble does. Sickness. Resistance to meds. Hearing the “T” word for the first time: transplant.

I’ll stop here for a second to pause and either remind or inform everyone that anxiety doesn’t do anyone any good. You can’t control the number of hairs on your head, your height, or the days of your life. There are some things that are always going to be out of your control, while others are under your influence by how you live and think. One thing is certain about all of these things: anxiety never changes the outcome. Since it has no positive bearing on things, we are advised “Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.” Phil 4:6. It is okay to be concerned about things that press on you, but do not dwell on them and allow them to get a hold on your psyche.

[Read more…]

Osteopathic Manipulative Treatment (OMT) for CF

Today’s guest post on a technique called osteopathic manipulative treatment is brought to us by Jill Roberts. She is a UF alumni just up the road from me, now living in Oklahoma. We “met” on Facebook via the CF connection many of us have as mutual friends and she told me about osteopathic manipulative treatment this week. I was intrigued, so I asked her some questions I had and offered her a guest post. I asked my doctor about it and he didn’t have any info on it for CF, but he didn’t warn me to not give it a try. Ask your doctors at clinic and check it out if you’re interested. That’s how it happens, so I hope you enjoy the topic as much as I did.

Patient receiving osteopathic treatmentRecently, a friend of mine was devastated because the OB-GYN who delivered her first child was now considered out of network and she couldn’t continue to go to him for her second pregnancy. She was frantically trying to find a new physician as she was 3 months pregnant. Another friend said, “Do you want to go to a MD or a DO (osteopathic physician)?” She said, “I would really prefer a MD as I have never been to a DO.” I quickly pointed out to her that the physician that she was crying over was in fact, a DO. Most people do not know the difference between a MD and a DO. The fact is that both DOs and MDs are fully qualified physicians licensed to prescribe medication and perform surgery. Where a DO differs from an MD is that DOs “combine today’s medical technology with their ears to listen caringly to their patients, with their eyes to see their patients as whole persons, and with their hands to diagnose and treat patients for injury and illness.”

OMT and my experience with it

I have CF and had a double lung transplant in 1997. When my health started to decline, I was hospitalized a lot for “tune-ups.” The CF center I went to was a teaching hospital for a large medical school. I grew up with MD physicians, residents, and student doctors. One time when I was hospitalized, an osteopathic resident was doing his pediatric rotation at the Children’s Hospital. He was the lone DO among a whole bunch of MDs. He developed a special interest in me and he asked my mom if she would be willing to let him try OMT (osteopathic manipulative treatment) on me. She agreed and he snuck me into a treatment room. [Read more…]

Sick and Tired – CFers Down!

Behind BarsI think 80% of my CFer friends have been working too hard, stressing out too much, or hanging out with the “sick crowd” this spring. It seems like every time I look at Twitter or Facebook, someone is going to the hospital, getting IVs, or wiped out and laying in bed.

It appears that my transparency about compliance yesterday resounded with quite a few of you who are busy. Starting my treatments back up has started a plan to not work until after lunch because getting my treatments done around 11am and then working for an hour before lunch is really no way to go about your day, so I’m using the mornings to completely take care of myself. Relaxing and doing my crap.

Doing night treatments are as big of a pain because we usually watch TV, which we can do while I do my Trio and Altera stuff, but it’s out of the question when I’m doing my Vest, although Beautiful can watch shows while I do my sinus neb if she is up by the TV.

I’ve got one more episode of Lost to go before I jump back into “24” Season 2. Everyone said to ditch Heroes after Season 2, so I can wait before finishing that season if it’s going to be my last. If ALL of my friends say it stinks after that, I have to question those who watched it until the end… maybe those are the ones not to take TV and movie advice from, eh?

So, that’s what I’ve done to completely rearrange my life to get/stay healthy. I feel a little better now, but I still feel junky in the morning. What steps are you going to take to both have a life and keep your life?