Know Gnus

Hey good looking...

Did you know that a gnu is the same as a wildebeest? Did you know that wildebeest isn't spelled wildabeast? Hmmph. I didn't. (http://en.wikipedia.org/wiki/Wildebeest) Now we know and can rest easier at night.

Not much going on with Kerri and I. Still no money from the state, lawyers continue to work on it. Enbrel is slowly clearing up the psoriasis (seems to be top down) with my ankles still bad but my upper body great. Should be getting back to work in the next couple weeks, so that is new and exciting! Just not exactly sure where "work" is yet. :)

-jim

Itchy Situation

I would have imagined that being on short-term disability would have led to frequent updates on this blog, but in fact the opposite has happened. Throughout this experience I have found myself online and e-connected less and less, with the exception of my iPhone. (Or maybe the iPhone was the reason in the first place? Hmmm...) Here's a recap of what's been going on with me....

In August of last year (2008) I noticed that scrapes on my knee and elbow weren't healing. After a visit to my family doctor and a course of antibiotics that failed to clear it up, I was told to see a dermatologist. I went to a practice in Washington Twp and was quickly diagnosed with plaque psoriasis. They prescribed a topical steroid to be applied twice daily. A couple weeks went by and I went in for a follow up. The lesions were continuing to spread, and a stronger steroid was prescribed, along with talk of UVB light therapy. The light treatments were only 1-2 minutes each time, three times a week. A few weeks later when the psoriasis had spread to every limb and my scalp, I made appointments for the UVB "light box."

For 4 weeks I went in almost every other day to stand in a vertical box with intense light to rid myself of this ailment. But the lesions were spreading still, eventually hitting my hands, face, nose.... the dermatologist eventually was convinced I needed a "biologic," a drug that would actually attack the immune system. You see, although psoriasis looks to be a skin condition, it is actually an immune disorder. My body makes skin every 2-3 days...yours, (assuming you don't have psoriasis) makes new skin every 30 days. That dermatology office, however, didn't handle those types of drugs. So they referred me to a rheumatologist in Haddonfield.

One blaring thing I've come to know all to well is that every doctor you try to see the first time is a process that takes weeks, sometimes months. This rheumatologist was no exception, and my appointment was scheduled for mid-December. I was also going to need blood work done (including liver and kidney tests), a tuberculosis test/screening, and a pneumonia vaccine. Rather than go to the first rheumatology appointment and just have to turn around and get those things done, I went ahead and took care of it all before the appointment.

The day finally came afor my appointment. After a quick look he suggested I start Remicade, a drug given by IV infusion. He said that after the first infusion I would need to do the second one 2 weeks after, the third one 4 weeks after that, the fourth one 6 weeks after that, and then continue going forward with an infusion every 8 weeks. I agreed and went to schedule my first infusion. The nurse informed me that the earliest they had was 12/29/08. Kerri and I had already planned our Christmas vacation to see my family in Florida...12/23/08 thru 1/3/09. So I went ahead and took Monday, January 5th, 2009 for my first treatment.

A week went by and I received a call from the nurse at the rheumatology office. After looking into the insurance she informed me that the payment for each infusion was covered 80/20, leaving me with 20% of the cost, or $400 each time. Let's see, $400 a pop works out to $1,600 in just the first few months. After talking it over with Kerri, we decided to try to get into the hospital where she works, the Hospital of the University of Pennsylvania. The insurance coverage was 100% there, and had we thought of that or known the costs earlier we would have started there. Ah well, what's that old saying about hindsight?

So I called UPenn and talked to the scheduling people in the rheumatogly department. Earliest they had? January 29th. Another 5 weeks. We were leaving for vacation, I was covered head to toe in psoriasis sores, and there was nothing I could do about it for over a month. I cried. Hard. Right there on the phone with the lady from UPenn. I had hit some dark moments, battled with the itching and embarrasment of how I looked, pleaded with God, and I was at the end of my rope....

Florida was a pleasant change. Mild temperatures, relatively stress-free. At one point near the end of the trip I actually thought I was seeing major improvement on my arms. Renewed hope set in. Maybe the worst was over and I could cruise through to the January 29th appointment and it would all be over soon. I arrived back in New Jersey on January 3rd, 2009. That's when everything changed.

The pain came quick and hard, like the worst sunburn you've ever had, and it was neck to ankles. My back, shoulders, back of my arms, thighs and ankles hurt the worst. And the psoriasis looked different. It was red, almost purple, with thick scales raised well off the skin. For a week I hobbled through it, wincing at every bend at the hip, screaming just to sit in my car. Then on Sunday, January 11th, as I went to put my shoes on and leave for work, a pain so intense that I literally saw stars shot through my body and almost made me faint. I sat and cried again...again begging God to take it all away. I ended up making it to the church, but left after an hour or so. Later that day I was admitted into the ER at UPenn Hospital.

The second dose of dilaudid numbed the pain to a bearable level. The third and I almost felt like a normal person. The dermatology department came evaluate me, and a wonderful doctor, Dr. Groft, said she wanted me back in her department in two days. It turned out the dermatology department handled the biologics at UPenn, not the rheumatology department. I went home on pain killers and a "soak and smear" regiment, where I would bathe for 30 minutes, not dry off, and then apply a topical steroid ointment consisting of a steroid in petroleum jelly and mineral oil. I can't begin to describe what it feels like to have that stuff on from neck to toe....ughh. But it helped calm the lesions down.

I saw Dr. Groft on Tuesday, and she recommended Enbrel, a drug that works like Remicade but that is administered by self-injection(!) once a week. Well, once a week once it's under control... once every 3 days for me. She, along with Randy (my boss) suggested and encouraged that I go on short-term disability from work until the psoriasis was under control. So be it, as long as we could knock it out quickly I was ready for anything. The Enbrel took a while to come due to a mismatch of my last name in the computers between UPenn and Independence Blue Cross. With a last name like D'Amico, you never know how a system will handle an apostrophe. Some leave it out, DAmico. Some put a slash, D/Amico. Some put a space, D Amico. And some take it the right way. Once that was all sorted out I was shipped the medication and had yet another bout of renewed hope for a quick recovery.

As I sat there, needle in one hand, a pinch of my thigh in the other, the only though on my mind was, "seriously, I have to jab this with 'a dart-like motion' into myself?" Kerri offered her help, but I knew I needed to be able to do it myself. BAM! Ok, it was in, now push the plunger.... Let me tell you, the consistancy of Enbrel is like syrup when it's cold, and even leaving it out to get to room temp does little to thin it out. It takes a good two or three minutes to push the whole amount in. Of course today, as I give myself my 30th injection, I have figured out a few tips and tricks.

Speaking of today, April 22nd, 2009: I am still in moderate pain daily, taking pain meds as needed (about every 4 hours). I did go to Florida for about a month to see if warm weather and sunshine would help. It didn't do a whole lot, but it was good to see my family. I still haven't seen a dime from the State of New Jersey for my disability claim, which is now in the appeal process. We have lawyers working on the case for us, pro-bono. Dr. Groft wants to give the Enbrel at least a full 15-16 weeks before changing to a different medication like Remicade or supplementing methotrexate, a chemo-like drug that adds dangerous immuno-suppressant effects. May 7th I meet with Dr. Van Voorhees (an international expert on psoriasis) and Dr. Groft at UPenn Hospital for ideas on my next step. All in all I have to repeatedly and intentionally seek out God every day and trust He has a purpose for these struggles (Romans 8:28).

I have to mention here, not because I know she'll read this, but because it's true - I have the best, most caring, loving and understanding wife in the whole world. It hasn't been easy on either of us, and I am proud of the maturity she shows throughout it all.

I'll attempt to update you all more often...and if you pray, please include me, I can use all I can get. But know this: I trust Him even in my darkest hours, and I know He is with me every step of the way.

-Jim D.

Contract Killers

When my wife and I decided it was time to replace our wooden fence enclosing our backyard I began to price shop different companies in our area. The seemingly obvious choice was Amechi Fence in Turnersville. They were well known and had been in business for over two decades. But I’m not the type to just go with the first company that comes to mind or that is recommended. I like to price shop; if I don’t compare costs then I’m always left with this nagging feeling that I might have been ripped off. So I called around and got quotes from three other local fencing companies. All of these quotes came in a few hundred dollars higher than Amechi. I asked a couple of the guys I spoke with from those other companies why they were more expensive. The answers I heard ranged from the quality of nails used (saying that Amechi used cheap nails that would rust in a few years) to size of company (Amechi could charge less because of the higher frequency of work). One thing, however, was told to me be every other person I talked to: “You will not get quality customer service from a company like Amechi that contracts out all their jobs.” As much as that thought lingered with me, I decided to save the money and go with Amechi Fence. Over $3,000 later and a few scheduling push backs due to bad weather our new fence was installed (mostly) in mid-July 2008.

The fence looked awesome. So what if they hit the sprinkler system 4 times? So what if it was only 99% done? It was new and way better than the 20 year old dilapidated junker we had removed. All was right with the world…for about 2 weeks. The following 3 and a half months were torturous. As I write this on November 11^th, 2008 I look back and realize I have NEVER, EVER had such a horrible experience with a company. And I’ve had some bad experiences. I should have learned my lesson about using a company that contracts all its work out when I had multiple issues with a large cable tv/phone/internet company that gave me headaches close to those I am now having with Amechi Fence. Maybe this is, after all is said and done, a “shame on me” situation. Let me be clear about one thing here, I never will blame the contractor in this situation (which is why they will not be named in this article). This is purely a customer service issue, and whether or not your company decides to use contracted work should have no impact on the type of service you give the paying customer.

Early August came and I ended up calling Amechi three times to get someone out to finish the fence. You see, when they originally came out a small section was left undone because they ran out of materials. I also wanted them to take a look at the gate they put in because it wouldn’t close anymore, only bang into the metal clasp that was made to lock it in place. I mean if you struggled, and pulled up, and wedged….it would eventually close. At that point I was confident Amechi would make it right, I mean I had only had it for 3 weeks! The contracted installer finally came out after another phone call and installed the final section of fence. He took a look at the gate and determined the post was warped. No problem I thought, I’ll just get back in touch with Amechi and get a new post.

What happened next is painful beyond all measure. Since that day I have called Lou, a salesman at Amechi, 4 times. After I figured out Lou wasn’t going to get back to me or help, I started calling the manger, Bob Meeks. Every time I spoke to Mr. Meeks he assured me he would handle it and get back to me. That happened THREE TIMES before I finally let out some frustration. It seemed no matter what no one wanted to call back or follow up. On my fourth call to Mr. Meeks he agreed to come out and take a look at the fence. He did come out. Now we’re getting somewhere! Not so fast. Yet again I had to call him after a week and a half of not hearing anything. He told me he would personally handle it, that he would fax over the details to the owner right away. A week passed…nothing. AGAIN I CALLED. A few days later he left me a voicemail stating that the owner, Mr. Amechi, was out of town with their repair man, Pete. The message also stated that, “next week he would send out Pete to assess what needed to be done.” That was October 14^th. Pete never came. I called Mr. Meeks today, November 11^th. He said Mr. Amechi is out of town (is he still out of town, or did he come back and leave again, OR is that your answer when you don’t want to deal with a customer?) I hung up and decided to stop in the store to talk with someone face to face. Lou was there and said he would now personally handle it and get back to me. About an hour later the contracted installer called me and said he would come out in a couple days to asses the situation (wasn’t he already out once before?). 5 minutes after I hung up with him Lou called me. His basic message for me was that, “warped posts are not covered under warranty” and that, “he understands my frustration.” Really? Does he? From everything I gather the contracted installer will come out in a couple days, determine (again) what needs to happen and the materials needed, and then according to Lou, I will have to pay for the repair. Or the safe bet, which is that I won’t hear back anything for a week or two and have to call them back again.

There are two major problems here. First, the complete runaround from contracted installer to salesman to manger and back to installer again. I truly believe that having a company contract out work causes communication breakdowns that greatly impact customer service in a negative way. The responsibility should fall on the company, in this case Amechi Fence, to follow up and insure a customer is satisfied and taken care of properly. Secondly, the warped wooden post. It may be, as Lou says, “not covered by anybody in the industry.” I have to believe that if I ran a business I would replace a $50 (retail) wooden post for a customer that bought a $3500 fence. In fact, I just called a few local fence businesses and every one of them said that if a post warped within a few weeks of installation they would replace it at no charge. Maybe I should have listened to them all from the beginning. Stay away from companies that contract out their work. Unless of course, you sadistically enjoy having to go through these painful customer service issues.

UPDATE:
I received a call from Bob Meeks, the manager at Amechi Fence today. He told me that he spoke with the installer and the owner, and that they have agreed to cover all cost and material to replace the warped wooden posts. He went on to say that he thought a lot about it and realized that this had been dragged out way too long and that he was impressed by the patience shown on my behalf.

Well, the process was wrong, but the outcome was right. What an answer to prayer!

Time For the Harvest

Headed to the Wachovia Center this weekend to see Greg Laurie speak, plus see some great free music. If you haven't heard of the Harvest Crusade (https://www.harvest.org/crusades) check it out. We are taking the youth over on Saturday to see Kutless and Toby Mac - good times!!!

So what is the Harvest Crusade? Well, here's a snippet from their website:

Since 1990, Harvest Crusades has put on large-scale evangelistic outreaches around the United States and in Canada, Australia, and New Zealand. More than 3,793,000 people have attended a Harvest Crusades event in person, and more than 310,200 people have registered decisions of faith in Jesus Christ.

Harvest Crusades events are designed to be opportunities for Christians to invite unsaved family members, coworkers, friends, and acquaintances to hear the life-changing message of the gospel in an environment that is entertaining, yet nonthreatening.

The cornerstone of each event is the presentation of the gospel by Pastor Greg Laurie. Biblically-sound and culturally relevant, Pastor Greg brings a clear gospel message, providing an opportunity for people to make a decision to accept Jesus Christ as Lord and Savior.

Sounds good to me. See ya there.

-jim

Rhett and Link - Incredible Talent

If you've heard of Rhett and Link then you know - they are very talented and extremely funny. If you haven't heard of them, check out their YouTube site (http://www.youtube.com/user/RhettandLink) and definitely check out this video...

http://www.youtube.com/watch?v=uyPDHh4d1Xo