On 9/12/01 . . .

The day after the horrific events of 9/11/01, I felt compelled to go to work. Though I was a field sales representative and wasn't required to appear at the manufacturing plant I felt compelled to put on my suit and head into the office. This was my small way of showing the terrorists that they would not slow me down.

On my way to the office, I stopped at a local party supply store. I entered the store as the manager was opening. I immediately asked if he had any American Flags. He said "yes I do, but they're in the back until the July 4th holiday season." I told him I needed to buy one. He went into the back and pulled out a big bucket of flags. I picked one out and said, "I'd like to buy this one". He said, "Fine, I'll meet you at the register after I put the rest of these away". My reply? "Sir, believe me, if you make these flags available, you'll sell more in the coming days than any Fourth of July season."

So, I hung my flag from my passenger side visor so everyone could see. One of the employees at work, Jodi asked, "Mark, where did you get that flag?" I told her and she immediately went to that store and bought out their inventory. At that time I happened to look out the window and I saw Jodi tying flags to each and every car in the parking lot. She entered the building, greeting with a standing ovation.

You see, the terrorists may have succeeded in killing many innocent Americans; but they failed to kill the American spirit.

May God bless us all! This September 11th and every day.

Health Update

Here’s a quick update from yesterday’s appointments:

1 – Met with a new rheumatologist from UMC @ UPH. He was very thorough and empathetic. He wants to gather info from my other doctors before devising any new treatment paths. I’ll be meeting with him again in a month

2 –Met with my Pulmonologist in the afternoon. Here we discussed my last CT scan, blood work, etc. Last CT scan shows an increased amount of scarring and granulomas, so he’s increasing my chemo drug for now and we may increase it some more in the near future. Blood work shows potential of diabetes so I’ve got to try to alter my diet, exercise and lose some weight. Additionally, my lymph nodes are going crazy as thought. Some are pressing on nerves, others causing headaches, spasm and all kinds of fun stuff. The only options available are to either go back on high doses of steroids or suck it  up and deal with it as best we can with low-dose morphine and meditation exercises. Steroids are out of the question because of the side effects and the damage done to some of my organs leading to potential diabetes. (FYI – I’ve gained 65 pounds during my steroid treatments. I’ve lost 39 of those pounds and have another 55 pounds to go!)

I took a PFT, pulmonary function test, which showed improvement over past tests. This means that my body is adjusting to the reduced lung function. For now, he’d like me to see if I can go without oxygen assistance for short periods of time. He also ordered a new sleep study, which I will do tomorrow, Wednesday. I’ve been having problems with too much back pressure from my CPAP machine. We may be changing to a BPAP machine. Not exactly sure that I understand the difference between the machines.

Next: dealing with my insurance coverage changing as of August 1^st – (now that I’m receiving SSDI, I no longer quality for the state’s health insurance program) I will no longer have prescription or medical equipment coverage. With bottled O2 running about $10k per year, not including BPAP or concentrator equipment, I’ve got some homework to do. If I can go without the BPAP equipment I may be able to trade in my current concentrator for a portable unit. This unit would work, plugged in, while I’m at home and would work on a battery charge while on the road or away from the house. This would also replace my need for expensive bottled O2. At issue is that the portable concentrator costs in excess of $5,000. With the equipment being somewhat fragile, I’m going to look into options for renting a portable concentrator.

I’ve also have to work on filing for grants for my more expensive medications ($2K+per month) with generics cost at $20 per three month period from the Walgreens Discount Plan.

So lot’s to do but hey, with SSDI, my health is my full time job. Things are falling into place and I am both confident and blessed that answers will be found and improvements will be made. As the docs continually remind me, though there are no cures, there is plenty we can do to attend to quality of life issues.

That’s it for now my friends. Be well and in touch.

/Mark  - 520-668-7425

OPINION VS. JUDGMENT

I find it very disturbing that many people are becoming more and more judgmental. After all that our country has been through (such as civil rights and the like) instead of becoming more accepting and encouraging, we use things such as social media, blogs and comments on news outlet web pages, to bash someone or something in a judgmental way. What ever happen to civility?

Stephen Covey said "seek first to understand, then be understood". Good advice. It's easy, and if I dare say, lazy to simply judge something and therefore come to a one sided conclusion. What happened to respect? So if my opinion doesn't agree with yours isn't better to say nothing or better yet say, as General Tommy Franks said "what a great country where people have the freedom to express themselves."? What I admire about General Franks is that he rarely, if ever, let's you know how he feels about someone's opinion.

So you have your opinion and I have mine. Fine. Let's express those opinions, share in the background that led us to those opinions and be flexible; flexible in a way where we are willing to change our opinion when served with additional, quality information. When one posts a judgment it appears stated in fact as if the book is closed on the situation and no other opinion or quality information will be considered. I find that sad and self-limiting to the author of the judgment.

And what about our young people? When they see what we write, what we express in such a final tone: "x-team is a bunch of losers". "x-political party are a bunch of selfish numb skulls", etc. What are we teaching our young people with such closed minded conclusions?

Next time you are about to post an opinion ask yourself something: "Is this an opinion or a judgment?" After all, what benefits the reader more -- a well constructed opinion or a sharp, nasty, biting judgment?

For myself, I find great peace in knowing that there is really only one Judge -- and it ain't me! It's not a job I want and I am certain, by no circumstances, am I worthy of such a position.

BANK OF AMERICA, SOCIAL SECURITY AND MORE

As some of you know, I’ve been battling a disease called Sarcoidosis. This rare, auto-immune disease has no cure, yet it affects over 17,000 people in the United States and we know of at least 20 folks in Southern Arizona who suffer as well. (resource: www.inspire.com)  

So far, my disease has left me with 42% lung capacity, blurred vision, hearing problems, coordination issues and very painful joints. I have been home, unable to work since March of 2010.

Towards the later part of March 2010, I filed for Social Security Disability and was denied. I am currently working with an attorney to re-file and the process is long. We, my wife and I, also filed for a mortgage reduction through the government’s “Making Homes Affordable”. Our mortgage company is Bank of America. We filled out all of the paperwork and were told on March 13^th that “all is in order and your application is now with underwriting”.

While waiting for answers from Bank of America we received notice that our $1400 per month mortgage would increase to $1900 per month. Seeing that we applied for mortgage relief, why would they increase our monthly mortgage by $500? When we called for answers they said the increase was to cover taxes and insurance – both of which we paid and have always paid on our own. Our plea for relief fell on deaf ears and we were told that we had to pay the increased amount. We paid for a few months and then we were offered some advice from a representative at BofA: “if you continued to pay your mortgage, the underwriters for the “Making Homes Affordable” program would not make a decision since you appear to be able to pay.” 

Getting to the point where we would have to borrow money to pay our mortgage we decided to stop paying. Six months later, Bank of America states that our application is still pending. In the meantime, over the past three business days, we have received a total of 64 notices of foreclosure with an auction date of March 30, 2011.

I continue to call Bank of America daily and they continue to tell us that our application is still pending and that the foreclosure and sales issues reside in a different department.

It is important to know that we aren’t one of those families who bought a home they couldn’t afford. We moved here from the Boston area in 2006. We put $74,000 down as down payment for the home. At the time our mortgage was $1400 per month and our monthly income was over $5,000.00. Since I’ve become sick and unable to work my wife has bared the brunt of working to support us. She earns about $1200 per month, we are on food stamps and have health insurance through Arizona’s ACCCS program and we are very grateful for both programs.

Prior to falling ill, I owned and operated my own handyman services company, Mark the Handyman. This was a very successful, growing business that contributed to the success of many other tradespeople. My electrician, plumber, general contractor, flooring installer and HVAC contractor all benefited greatly from my referrals to great customers here in the Vail and Tucson areas. Mark the Handyman was very active in the Greater Vail Chamber of Commerce as well.

In addition to my business I was also involved in the Stephen Ministry program where I was the leader at Desert Skies United Methodist Church. I was also involved in the city-wide Stephen Ministry program which included 18 churches from around the Tucson area. Stephen Ministry is a program of volunteers helping those in crisis. More can be learned by visiting www.stephenministry.org. I’ve also started and now chair the Sarcoidosis Support Group of Southern Arizona. Here we talk about our treatments, our challenges and explore resources. I’ve also served as our neighborhood’s representative to our HOA with hopes of building a solid, caring community in our neighborhood.

Side note: We moved here from Boston for the drier climate. You see, I was hit by a truck as a pedestrian back in 2003. The accident resulted in permanent nerve damage. Though I was encouraged to file for disability then, I thought it imperative that I use the skills I had acquired to help others while making a living.

I share this very personal information with hopes of showing others that they are not alone. Additionally, we are seeking help from anyone who can. Today, we’ve contacted both Representative Giffords’ office as well as Senator McCain’s office and are awaiting their response.

We've also sent this information to our local news channel, KVOA-TV as well as the local newspaper, Arizona Daily Star.

If you have any questions or suggestion, here's our contact info:

Mark & Charlene Dec

162 East Forrest Feezor Street

Vail, AZ  85641

520-668-7425

handyman@markdec.com