Posts Tagged With: MS

My $7.50

750

Who concerns themselves with $7.50? I found that I do. To my own detriment, I refused to give $7.50 for medication I need. That’s right, my Multiple Sclerosis medication co-pay was $7.50 and I refused the medication!

I was diagnosed with Multiple Sclerosis over 16 years ago. I have gone through many Tecfidera 1different forms of treatment that have included daily injections, one week IV infusions and most recently a twice daily pill. Simply take 1 in the morning and 1 at night. Simple, right? Well… money and my hatred of pharmaceutical companies and insurance companies have combined to even complicate taking medication daily. The medicine I am talking about is Tecfidera. The insurance company is Humana. If you had asked me a few months ago, I would have sang their praises.

What changed? Well, Tecfidera costs OVER $6,500 for a 30 day supply.Yeah… take that in. When my doctor suggested I start taking Tecfidera, I said, “It depends on what it costs Printme!” I said I would agree and start taking it if my insurance paid for it. Behind the scenes, Humana Specialty Pharmacy worked something out and I was able to start taking the medicine. Now keep in mind, this is only one of MANY meds I take to help treat my MS and symptoms. Each month I would get a call to remind me to refill the prescription and it would be sent to me. The call ended with a “and your co-pay will be $0”. This went on for months.

The call at the end of July for my August refill ended with, “Your co-pay will be $7.50.” The representative was assuredly surprised when I exclaimed “WHAT?” The rep remained polite and explained my assistance program had expired. I asked how to get it restarted. I was transferred and was told by this new rep that they would see if funds were available. It did not take long and I was told there was no funding available. I said, “Oh, I guess that is my indicator to stop this med.” She seemed surprised. I replied telling her the pill costs over $6,500 per month and somehow no funds were available to help me?

Did I have $7.50? Yes. But, the idea or principle of the matter for me is that – my $7.50 does not matter. Humana or Biogen, one or both should be making PLENTY of money on a $6,500 a month drug. Getting $7.50 out of my broke ass just seemed to paying for someone’s Starbucks. I just imagined whoever in the chain came up with my co-pay being $7.50 said, “I will be able to get me a Starbucks off Thomas each month.” Well, at my health’s expense, I refuse to buy someone charging over $6,500 a month for medicine a Starbucks. What “funding” or assistance program no longer had $7.50? It did not matter to me.

My protest over my $7.50 co-pay hurts no one but me, but I feel a satisfaction that Humana and Biogen are no longer getting their money either. If I remember right, the meds were $6,594.38 each month. The meds price had been increasing each month it seemed and at $6,594.38 I was fed up. It is RIDICULOUS for meds to cost that much. In my case, since Humana is my Medicare provider, I am saving the taxpayer roughly $6,586.88 ($6,594.38 – my $7.50). Someone is getting PAID and someone is PAYING. I no longer will participate in this scheme!

I have noticed extensive advertising for Tecfidera also. During the Price Is Right, I may see the ad a couple times. It runs regularly. My question is why should I ask my docotor about taking Tecfidera as the ad suggests? Shouldn’t my doctor ask me? Shouldn’t Biogen be telling the doctors about Tecfidera? I OFTEN see pharmaceutical “reps” parade in with their lunch for the doctor’s office and I’ve attended informational dinners sponsored by the pharmaceutical companies  with my and other doctor’s being paid to speak at these dinners. So, there seems to be A LOT of waste for promoting medicines.This resentment may com from the fact I once wanted to be a pharmaceutical rep! lol

I will continue to treat my MS and symptoms with meds that are more affordable for the Tecfideratax payer, the consumer and ME! With swindlers like pharmaceutical CEO Martin Shkreli raising the price of a HIV drug 5,000% and Heather Bresch raising life saving EpiPen more than 470% being rewarded with more and more money… I say NO MORE! I see pretty much ALL pharmaceutical companies and health insurance companies as nefarious, greedy, and futile (futile to all but their stockholders)!

With the choice between Hillary Clinton and Donald Trump, I see no hope to reign in rapacious corporations. Another reason I morn Bernie Sander’s departure from the election. I know Bernie would have instigated change. As long as pharmaceutical companies have lobbyist, patients will be screwed! I hope to see Bernie Sanders and Elizabeth Warren team up in the senate to attempt change but, I have little or no faith in the US government to protect me in matters of health.

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Once the $150 a year cost is covered – 50% of EVERY donation will be given to a charity (the charity will not be ME)!  😀

 

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The Weight On My Shoulders… And Elsewhere 2

Week 1 Update: Week 1 came to an end as a success! I lost 7.2 pounds! The biggest challenges I am finding is with this diet (The 17 Day Diet) is food prep and exercise. With most any healthy way of eating, stuff out of the can will not result in “healthy” eating. Canned veggies may be somewhat healthier than other options but preparing fresh seems to be the path that nets me the best results. This also adds time cooking and what I dread most about cooking…cleaning up after (lol)! That extra effort may be what helps burn an extra calorie or two. Any extra calories burned is a benefit because the weather is not cooperating with exercising. We run the air conditioner during the day and the heat at night. Even though neither the heat or the cold is extreme, the fluctuation is a challenge for my Multiple Sclerosis (MS). This has kept me from fully making a great effort with exercise because the frequent changes in temperature is a trigger for my relapsing. I proceed with caution. But seeing results is encouraging and is still motivating me to continue. The results are not “evident” yet, so no photo this week but if you did not see the starting post, here is the link: http://wp.me/pKLa8-RF

 

Blogging is not free!  Please help cover the costs!

Once the $150 a year cost is covered – 50% of EVERY donation will be given to a charity (the charity will not be ME)!  😀

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The Weight on My Shoulders… and Elsewhere :-/

Ghirardelli Chocolate Festival

There is something about San Francisco that gets my attention regarding my weight. Six years ago, I was in a friend’s wedding in San Francisco and almost had Grrra breakdown when I saw the photos. I was horrified at how I looked. In the six years since, 4 -5 of those years I had actually gotten down to my ideal weight and was happy with my weight. This last year has been a struggle not only as my Multiple Thomas_in_BogotaSclerosis (MS) continues to progress, hampering my ability to exercise, but realizing I had returned to the same weight I had been in the wedding photos that shook me up so is depressing. Well…. I am shaking again after visiting my friends in San Francisco and seeing myself in photos that again horrify me! 

After the wedding, I moved to Colombia, South America. There, a lifestyle with no car, that necessitated the simple act of walking more; access to healthier food at a much lower cost; with the additional benefit of a climate that was more beneficial for my MS and I found being healthier… easier. My MS combined with a tight budget has landed me back to a life in The States and my weight reflects my frustrations with adapting. 

In an effort to create some accountability, I plan to “blog” about my journey back to my ideal weight or my attempt to make this happen. I plan to post about once a week about what I am doing, how I am doing it and the results. My goal is to keep it simple… diet (eating healthy) and exercise (walking). I will be following the guidelines of “The 17 Day Diet” (http://www.drmikediet.com/). Here is my “CliffsNotes” of the 17 Day Diet: avoid white foods as much as possible, no starches like rice, potatoes, or bread; eat plenty 20140914_174304of protein and fresh veggies; 2 servings of dairy and 2 servings of fruit daily; drink green tea; and spend at least 17 minutes making a concerted effort at exercise. During the 17 days, I keep a list of foods that I crave during the 17 days and in-between the 17 days cycles, I allow reasonable “treats” from that list and I call these my “cheat days”. So… there will be no more Ghirardelli Chocolate and Wine Festivals. 😦  And yes, that is chocolate on my shirt and I am having a big ice cream AFTER being at a chocolate 20140830_145822festival. Gone are those days!

This is the photo that shook me up this time and that I use as my “before” picture. True, the angle may exaggerate my size a bit… but does not lie… I am that big! I will still post about consumer, social, political and religious issues but also look for updates about my progress. My 17 days began, Monday, October 13, and I weighed in at 227.7 pounds (103.28 kgs). 

Blogging is not free!  Please help cover the costs!

Once the $150 a year cost is covered – 50% of EVERY donation will be given to a charity (the charity will not be ME)!  😀

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Best Buy Bye

Best Buy Bye

 

In this day and time, MANY businesses are still in dire need of Customer Service 101 lessons. Who gives businesses these lessons, usually for free – the customers. The biggest problem is businesses no longer listen to customers. I know I have offered my share of suggestions to many businesses myself and know I am not alone. Best Buy is a repeat offender with simply pissing me off!

Best Buy was once topped my list of favorite retailers but after an incident a couple of years ago (http://wp.me/pKLa8-Be), it lost its standing and lost much of BBmy business because I was soured with them. Amazon has yet to let me down with costumer service. As I understand things, Best Buy is not adequately competing with  the likes of Amazon and Best Buy fells to see SERVICE is a key reason.

Any desire to do business with Best Buy is GONE. I hate when I am ignored or dismissed. While trying to order a coffee maker, I wanted to use a Best Reward certificate, a couple Visa gift cards and then the balance on my Best Buy MasterCard. Why did I not just get this in a store? The item I was interested in is only available online, there are no stores close to where I live (at least 60 miles away) and I am disabled and shopping online is the best way for me to shop. I found that online, I could not use multiple forms of payment.

I thought surely if I called, the associate that answered would have no problem with this request. I explained why I called, we rebuilt my order and after all of this he informed me he was not able to use multiple forms of payment either. He told me my only solution was to go in a store where they had that capability. AGAIN I explained the item is only available online, the nearest store was 60 miles away and I have Multiple Sclerosis and jumping in the car and driving 60 miles for a coffee maker was an option I WISH I was up to doing or able to do!

Online ordering did not work, calling in did not work, so surely if I sent an e-mail I would get help finding a solution! I was wrong! BB PaymentsAfter explaining the events in an e-mail I wrote at 10:45PM, I was surprised to receive a reply in less than an hour. It was patronizing and very dismissive; with a link to “Supported Payment Methods” (see screenshot). If you are like me, you read Visa on the list and I was under the impression a Visa gift card could be used anywhere Visa is accepted – except for Best Buy! This angered me! Since Best Buy was so fast to be dismissive to me, I have been fast to post this testimony. Whereas it is good to respond to a customer’s e-mail quickly, if VERY LITTLE EFFORT is used to find a solution it would be best to take a little more time. In fact… the e-mail reply from Best Buy only offered me to call Best Buy Reward Specialists to get help using my Best Buy Reward certificate – THAT HAD NOT BEEN A PROBLEM TO USE… it was the Visa Gift cards! AGAIN, the concern was not even addressed. I am guessing disabled online shoppers are such a small part of Best Buy’s business that they do not care and I got that point.

One benefit I had in this situation was my Best Buy MasterCard had a $0.00 balance. I found a fast solution to reducing the temptation to do business online with Best Buy again – I closed my account! CitiBank issued the Best Buy MasterCard to me and even though CitiBank had not been the problem, the account was closed. Actually, the person I spoke with at CitiBank was VERY friendly and after closing that account, I applied for another card at CitiBank. Both Visa gift cards I had were issued by CitiBank… so I think it is sad their business partners using their MasterCard Rewards credit cards can’t also use their Visa gift cards.

Now I have Tell 3000vented to Best Buy, CitiBank and now you, I will remind Best Buy of something Mr.Pete Blackshaw  says and I quoted the last time I had issue with one of their manager’s – “Satisfied Customers Tell Three Friends, Angry Customers Tell 3,000”. I highly suggest Best Buy reads this book because I am still averaging around 3,000 views a month on my little blog here, so in my case… I hit well over a total of 3,000, my total is over 53,000 actually! Bye Best Buy!

 

 

Blogging is not free!  Please help cover the costs!

Once the $150 a year cost is covered – 50% of EVERY donation will be given to a charity (the charity will not be ME)!  😀

 

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Losing Favor Over a Promotional Sweepstakes

When I am asked what I write about in my blog, I have usually listed politics, religion, social issues, travel, and whatever is on my mind. Now I have had over 50,000 Let's Let Al Unser, Sr. Answer Thatpeople view my posts here, I see the posts that are about businesses or services that I have written about are just as popular. So now I add consumer advocacy to my list of topics. This post describes how a product/business that I liked A LOT has lost favor with me over a sweepstakes. There was a time that entering my sweepstakes was an easy and pleasant way to pass my time whether I am down because of my Multiple Sclerosis or just passing some time with the hopes I could win something. Winning “The Fastest Seat In Sports” sweepstakes from http://www.shophonda.com last year was a highlight that has kept me motivated to keep entering sweeps. But now I know that little thought is put into how some sweepstakes are set up and designed. It makes me wonder, have sweepstakes designers ever consulted with a “sweeper” (a name I call people like me that enter lots of sweepstakes) about the sweeps they are designing?

An example of a poorly designed sweeps and prize, I highlight the “Take Off With Biscoff” sweepstakes (http://takeoff.votigo.com/takeoff). This is a sweeps that checks off Biscoff Sweepsmany of my bad sweeps pet peeves. Peeve 1 – Making it seem simple, but it is not! It says, “You can WIN A TRIP by Biscoff Photo Rulesuploading a photo. Tell us how Biscoff Cookies – The Airline Cookie – elevates your day! Upload a photo showing how you enjoy Biscoff Cookies, for a chance to win a Trip for two to Europe and more prizes“. This seems simple enough… but check out the photo of the entry requirements for the photo – WAY too many to mention! All of this just to enter. Yes it is best to “study” ALL of the rules so you can enjoy their promotion!  lol

Peeve 2 – “Public  voting”. After someone jumps the hoop to get entered… then you only think Biscoff Determinationyou are at the mercy of the public to vote if your entry even makes the gallery. Then it is only a competition for people who have skills that make their entry more interesting than the others, not something most will, can, or have time to do for ONLY A CHANCE to win a prize. But guess what… even if your entry gets the most “votes” does not mean you win. The public “vote is only 40% of how a winner is determined. The other 60% is from a “Sponsor-selected panel of judges”. I include a photo of how the winner is determined and see if you understand it with a simple reading or do you have to reread and calculate in your head what they are saying!  Study a little more! lol

Peeve 3 – The prize! Yes, I even have issue with the prize. Why would I have issue with the prize? A 3 day/2 night trip to Europe. What do you actually get with this trip? JetlagFirst let’s pretend you are healthy (I have MS and eliminate myself from this scenario), you spend day 1 basically flying to the sponsor determined destination in Europe… that’s right, the sweeps does not even tell you where you are going!  lol Now to me, destination unknown would be fun. But after spending pretty much a day getting there and spending night 1 in bed exhausted and jet-lagged after flying over several time zones, you have day 2 to drag though. So on day 2 of a 3 day trip, you do as much as you can before having to get back to the hotel so you can spend night 2  to get ready for day 3… flying home!  lol Sweepstakes in the US with US destinations that have a 3 day/2 night trips is really silly… so why did anyone think a 3 day/2 night international trip would be a good idea? Sounds penny-pincher to me and we know penny-pincher trips are so much fun!!! So, the only real option for most would be to take the alternate $4,000 gift card – which is what I would HAVE to do.

Now with all the sweeps in enter, why has this one set me off and inspired me to write a post about it? See the vague e-Biscoff Rejectionmail I got after trying to jump their hopes to enter this sweeps! I had posted this photo of clouds out my window flying. DSC00016Even after being rejected and studying the rules again… I do not see any violations of the rules.  I told a sap story of asking for extra Biscoff Cookies from flight attendants so I could share them with my Mom after my flights, Cookies with my Mom elevates my day. There is a very small chance the hashtag  #takeoffwithbiscoff may not have pasted when I copied and pasted it into my comment. But still, and e-mail that does not say what I did wrong does not inspire me to take (waste) the time to try again for a minuscule CHANCE to win a trip that would be challenging at the least for someone with MS. So I chose to take (waste) my time writing this post.

The alternate $4,000 gift card would be life changing for someone in my situation, just as would winning the First Prize of 50,000 Delta SkyMiles would be GREAT. But now, even winning the Second Prize, a years worth of Biscoff Cookies, would only leave a bad taste in my mouth! I see in the gallery of the sweepstakes that many others must have studied the rules better than me and entered successfully and I wish them luck! So if I accomplish anything in a sense of advocacy with this post… it would be that ANY company using sweepstakes consider that you want your sweeps to be simple and FUN and Biscoff Cookies (Lotus Bakeries North America) missed the mark with me on this promotion and caught me in the right mood that rejecting my entry just pissed me off! I think you can also guess that The Biscoff Coffee Corner is off my itinerary during my August trip to San Francisco.

 

Blogging is not free!  Please help cover the costs!

Once the $150 a year cost is covered – 50% of EVERY donation will be given to a charity (the charity will not be ME)!  😀

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I Was IN the Fastest Seat in Sports

Me - Al -James

“Little Buddy” James, Me and Al Unser, Sr.

Sometimes my Multiple Sclerosis leaves me confined to bed more often than I like. One way I pass some time while stuck in bed is entering sweepstakes online. I see it as a ePrizeway to entertain myself; while I have no expectations of winning – I do HOPE to win.  Over the couple years I have been doing this, I have won an i-pad, gift cards from Best Buy, Southwest Airlines, and i-tunes; coffee mugs, t-shirts and etc., but nothing of significant value. All of that changed on August 8, 2013, when I got a phone call from Cathy at ePrize explaining I needed to check my e-mail to sign and return the forms to accept my Grand Prize trip in the http://www.shophonda.com “Fastest Seat In Sports” sweepstakes.

Fastest SeatThe grand prize trip to the IZOD IndyCar® Series Grand Prix of Baltimore included: a ride in the IZOD IndyCar® 2-seater driven by an Indy Champion, 2 credentials to the race, 3 days/2 nights accommodations, round trip airfare for 2, a prepaid debit card. That is what was listed as the prize on the site, but the official rules revealed the gift card was $250, and the package additionally included car service, a $500 IZOD gift card and a check to help pay the taxes. The Approximate Retail Value of the prize totaled $5,450! 

My excitement soon began to cloud. Because of my MS, I escape the extremes of the summer and winters in the US and visit Medellin, Colombia – The City of Eternal Spring. Since I was out of the country, I was thinking I would have to forfeit the prize. Since my buddy James lives in Washington D.C., I asked if he was my plus one and only one airplane ticket would be needed, could I fly from Medellin? The price of the ticket was within the budget and I was told that I could travel from Medellin. Furthermore extending the date of the return flight offered a lower fare and would allow me to visit my friend in D.C. longer.

The trip to D.C. began with leaving my apartment at 1:45 am for the 45 minute ride to the airport so I would arrive 3 hours early for my international flight. Copa Airlines did not have agents available for us to check-in until 2 hours before the flight and they began by explaining the 5:22 Copaam flight was canceled and I would be on the 7:00 am flight to Panama and would only have a 30 minute connect time (strike 1). Remember, I have Multiple Sclerosis and move slow? Well, my moving slow was no issue because when I arrived at gate 5 in Panama, we were told there was a gate change to gate 29 – on the other side of the airport (strike 2). Once I arrived at gate 29, I learned we had to go through security at the gate, as in they opened our bags and used the security wand on each passenger AT THE GATE (strike 3). Guess what? Our gate was changed AGAIN to gate 33 and here we had to go through security AGAIN AT THE GATE (strike 4)! How our flight was only delayed a little more than an hour is a mystery. This was a HORRIBLE first impression of Copa Air. For the canceled flight I was given a $100 flight voucher (forgiving 1 strike), but for the chaos in Panama – nothing (still leaving 3 strikes – they are out)! I doubt that voucher gets used because I doubt I will give Copa Airlines another chance. Thank goodness I arrived a day early so I had the opportunity to rest take it easy and have a simple dinner at my friend James’ house.

MarriotAugust 31, we drove over to Baltimore and checked in at the Residence Inn by Marriott Downtown/Inner Harbor where we were told, “Your room is already paid for and we just need a credit card forCredentials incidentals.” James and I dropped off our luggage and headed to pick up our credentials. The young lady that gave our race credentials informed us our credentials had an all important “PC” identifier that gave us access to the Paddock Club. Wanting a beer… we began our mission to find the Paddock Club. We began this search at the Paddock… that seemed logical! (lol) We flashed our “PC” badges and entered the “Andretti Club” since that DSC_0149was the only “club” we found at the Paddock and we were VIPS (lol). It turns out when we reached for a beer, we were told our badges were NOT for the Andretti Club and as we were “walked out”, the polite lady got on the radio and gave us directions to the area the Paddock Club was located – in the Camden Yards parking lot (home field of the Baltimore Orioles). We eventually found we had access to the official Indy Team VIP tent! (yay) After a couple beers we checked out some of the American Le Mans Series, searched for earplugs and went to dinner before calling an end to day one.

DSC_0153Race day began with meeting Donny, the sweepstakes host. This is when I learned that not only would I ride in an IndyCar… I would be riding in the STARTING CAR with 4 time Indianapolis 500 Champ Al Unser Sr. as my driver! Off I went to the IZOD Indycar® 2 seater trailer to get suited up in a FIRE SUIT. This is when I met Al Unser Sr. in person and he could not have been more down to earth and friendly. I kept using Mr. Al when he looked at me and said, “Just call me AL” and I DSC_0175wondered in my mind if he would call me Betty. (watch this if you do not get that joke: http://youtu.be/uq-gYOrU8bA ) Before following Al  across the IndyCar Stage where we were announced as lead car for the race, I was standing with a lot of the drivers just chit chatting. Marco Andretti, Scott Dixion were 2 drivers DSC_0182I recognized and Marco stole my seat next to Al!  (lol) Then we were off to the Pits. DSC_0201This was my first race to attend and not only was I there… I was in the Pits being interviewed by tv cameras, with a Champion! It was as close as I have come to feeling like a celebrity!

DSC_0190Now the time was here – I was climbing into an IndyCar! There was a microphone and earbuds in the helmet so I could hear the NBC Sports broadcast and was told they would interview me during my lap. Let me also tell you, there are a lot of straps that were connected to hold me in that car! (lol) I could hear the noise of the car and the sportscasters in my ears, I was overwhelmed as we took off. The first lap was a modest speed and I was thinking, “Oh, this is cute, to roll around the track in an IndyCar!” After the first lap, Al punched it and I felt Newton’s Law of motion take effect as my head flung back! I became a human Summitbobblehead! At this moment, I heard the NBC sportscaster ask me how was the ride? All I could say at that moment was, “I’m a little frightened right now!” (lol) That was my witty retort! I had planned to say, “It is like riding with my Mother before we took the keys from her and trust me… that is a compliment for a race car driver.”  But no, all I said was I was frightened!  (lol) I really was StartNOT frightened, I was EXCITED and adrenaline had replaced the blood in my head and had taken control of my brain.  Then I saw we were pulling into the Pitstop, just that quick … the ride was over. 

James and I had been given grandstand passes and we sat to watch the race. The experience in the grandstand was anticlimactic. I wanted to stand up and tell everyone, “That was me that was in the lead car!” But I did restrain myself. All weekend I had been telling people I was a sweepstakes winner, I was riding in the lead car for the race and now I could say THAT WAS ME! (lol) One drunk guy in the Paddock seemed TOO excited to meet me, but most humored me – especially James, he is very patient with me! I have to say, it was a GREAT experience and I was very happy my “Little Buddy” James was there with me. If my friend Camilo had a US tourist visa, it would have been him with me. Camilo is a true race fan, James was like me… we knew little and just went with the flow. I do hate Camilo missed out and guess what I heard last night, Camilo got his tourist visa and he told me, “Next sweeps win… I travel as your plus one!” But James is THAT friend who knows how to put up with me in this kind of situation! (lol). James stood patiently by my side through the whole experience and I am sure he still enjoyed it. James gets a jewel in his crown for being such a great support! 

At checkout I learned that the hotel had charged my card for the full stay when all I should have paid was the 2 days of parking. They corrected this, but it did tie up my Marriot HotelsMarriott Frontfunds for more than 3 days since it was a holiday weekend. Even after making this mistake and with the inconvenience it caused… we did not even get a discount on the parking. I am a former Marriott Rewards Platinum member and the fact they did not even acknowledge the inconvenience their error caused was a huge disappointment and now Marriott may join Copa as businesses to avoid when I travel again. 

Astro and White HouseThe next few days I rested in D.C. at James’ house because a weekend like I just had would tire most anyone, but with my MS, I was glad I had a few Astrodays to rest before traveling back to Medellin. I did go into D.C. one day to get doughnuts at my favorite place, Astro Doughnuts & Fried Chicken… an indulgence I always try when in D.C.  I took my White Housedoughnuts and BIG coffee from Au Bon Pain and sat in front of the White House and reflected how surreal my life is at times.

All that was left was getting back to Medellin. I dreaded my flight back on PanamaCopa Airlines, but made the best of it, but nothing special redeemed them and still doubt I fly with them again. With a 6 hour layover in Panama, I took a taxi into Panama City had something to eat and a quick look, but for me the highlight was – I got a new country’s stamp in my passport. 

I have been home more than a week and just now mustered the energy to write about this astonishing experience. I fight my MS that robs me of so much, but even as I slept 12 to 16 hour nights since returning because the trip drained me so, THANKS to James for joining me and being such a great friend, I am so lucky to have a friend like him! I am so thankful to http://www.shophonda.com for granting me this ONCE-IN-A-LIFETIME experience! Cathy at ePrize, Jean at Travel By Design and Donny the sweeps host also deserve a BIG THANKS for all their help making this such a great trip and an experience that simple folk like me seldom get to enjoy! My last thank you is to Al Unser, Sr. for simply being such a cool man! In spite of Copa Airlines and Marriott… the trip was a BLAST!

Blogging is not free!  Please help cover the costs!

Once the $150 a year cost is covered – 50% of EVERY donation will be given to a charity (the charity will not be ME)!  😀

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Are You Crucifying Christianity?

I grew up going to church anytime the doors were open. After high school I even considered becoming a minister as my profession. Being reared in a middle-class home and maintaining a middle-class lifestyle in my single income home after university made it easier for me to hold to the values and principles I had grown up with. After admitting to myself I was gay, being diagnosed with Multiple Sclerosis, losing my health, job, lifestyle and health insurance… I became one of “those people” – I am POOR! This is my new “coming out”, admitting I am poor. I tried and struggled for a while to hold  on to my lifestyle but was not Vegas Stylesuccessful. I had to watch as a new owner drove off in my BMW convertible and I was a witness as it faded on the road’s horizon. Soon after this event, I left Las Vegas (where I lived at the time) and I began feeling scared by the idea as an “adult” I was dependent on others for help with even basic needs.

Along with the change in location, came a change in the way I saw the world. My attitude changed. I got over: being a conservative, being a devout Christian and a Republican as I felt the challenges of my new life choking me. I can’t fully embrace the Democrats because they are not doing any better either. The more I learned from studying the Bible, the more I felt distanced from the God of the Bible. The Bible as a moral guide for my life just felt wrong. As I see Republicans fight to protect the wealthy and try to take money from social programs for the poor, the more they reveal to me that they are hypocrites that only talk about church and Jesus for their campaigns (again the Democrats are not much better, they just do not court the religious vote as much as the Republicans do). The more I learned about Jesus, the more I began to realize that most who profess to be Christian should be called Biblican not Christian. A Biblican is one who uses the Bible to justify their disdain and prejudices for others while dismissing the main points of Christ’s message – love and help one another. So now I introduce a new name I added to my vocabulary – Republibiblicans. Republibiblicans use the Biblicans to to sir up votes as they frighten people of the very things they should support and embrace – if they were true Christians.

Now, how do these things come together for me? With my background and education in marketing, I saw to it that I continued to “market” myself as something I wasn’t. I soon realized I was a Clean Handshypocrite and there are few things I hate more than hypocrites. I was presenting myself one way to the world while living quite differently. My facebook marketed myself as “healthy”, “happy” and living an adventurous life. I needed to be more honest with my family, friends, and even the few people who read my blog – MY LIFE IS A CHALLENGE! As a gay man, I urge other lesbian, gay, bisexual and transgender people to come “out”; I now want to be an advocate for people living challenging lives to “come out” and become a voice for CHANGE! As the LGBT community has learned, when people KNOW who we are, they are more comfortable embracing us as “people” they can love and accept in their lives! Being poor is no more contagious than being gay is!

Since I am no longer a person of “faith”, why am I concerned with how conservatives, Christians and Republicans are marketing themselves? Because some of “these people”… I love and care about and they are better than what these groups are standing up for and standing against! I want to encourage someone I know that is a “conservative Christian” to see that he/she is not helping his/her claim to be Christian with a post like the “PLEASE DON’T FEED THE ANIMALS” photo! The photo also makes me wonder… who measures the Department of Agriculture’s “pleasure” to do anything and what evidence do they have the DoA is “pleased”?! Jesus (the Christ part of being a Christian) taught: RepublibiblicanFEED the poor, render unto Caesar the things that are Caesar’s (a “comment” Christ made about taxes), do not be like the Pharisees that wear their religion as a badge of honor! Where is the Christian outrage for what Congress is trying to do to the poor?  Isn’t the food stamp program exactly the kind of “program” Jesus would support? Would Jesus also encourage people to do even MORE to HELP these people? I am not sure who to credit with saying, “get off your cross, we need the wood”, but I do hope I am able to BUILD and do more for society than just mock poor people, because I am one of them.

In the interest of full disclosure, I should say, I may be poor – living only my social security disability and I do have Medicare, but I am not homeless and do not receive food stamps or welfare. That is not why I am defending the ones that need food stamps, I am defending them because it is the right thing to do! My “lifestyle” is maintained with a below US poverty level income – nothing glamorous or leisurely about my live. ALL of my worldly possessions can fit in 2 checked bags and 1 carry-on. I have been hungry, I have needed to skip meals because of a lack of food and/or money, but I have never really known HUNGER. I would rather go down fighting with people who can empathize with my situation than to help enable the ignorance so many have of what life may be REALLY like for many poor people and highlight the apathy someone must posses to ignore their NEEDS – basic needs like food, health, and shelter. And yes… my “personal” marketing campaign still includes more highlights of the “good”, simple pleasures in life than my struggles with Multiple Sclerosis and finances. No longer is my “personal” marketing campaign a denial of the pain, suffering and challenges I face in life… these challenges are more difficult to express sometimes.

When I posted on facebook my feelings about this situation, I was told,”Judge not lest you be judged.” But that is exactly why I feel I need Joel Osteen Houseto SAY something, I would be judged for my silence! I cannot escape judgement of others but thank goodness and thanks to people like this, I do not fear “judgement” from their God! And OBVIOUSLY their leaders are not worried about being judged either with MULTI-million dollar homes! As I stated earlier, I have read and studied the Bible and hope never to be called a Biblican or a Joel Osteenian! But if I were called a Christian because my life reflects Jesus’ very solid ideals and sound social teachings, I would not mind at all. Just as I would not mind being called a Gandhian, Martin Luther Kingian or any variation of the name of someone who stood up for social justice! I am simply making sure my hands are clean, Mr. Marley! Maybe after a post like this… I SHOULD consider the ministry again? Maybe you can support my “MINISTRY” by using the paypal links on my page? OH MY God… I am as bad as “THEM”!! lol

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Dreams Once Dreamt

How many times in life have we had BIG dreams? How many times have we believed they could be more than dreams, actually become reality? Dreams only come true in fairy Zack Kopplintales, right? Recently I have been inspired to follow my dream again by 19 year-old Zack Kopplin. He is a sophomore at Rice University and science education activist that campaigns to keep teaching of creationism out of schools, end and/or block school voucher programs and also supports separation of church and state issues.1  It all began as his senior project at Baton Rouge Magnet High School to repeal the Louisiana Science Education Act and now his team of supporters to repeal LSEA includes: 78 Nobel laureates, the over 10 million scientists that are members of American Association for the Advancement of Science, the New Orleans City Council, endorsements from the Clergy Letter Project and has laymen support from nearly 75,000 (at the time this was written) people that have signed his petition at change.org.  Let me say again he is 19! My goal at university when I was 19 only concerned  devising a class schedule that avoided early morning classes and in that I was relatively successful, obtaining a Bachelor’s degree with only one 8am class!!

When I was young, I was often told with my outgoing personality I would become a preacher or a politician. The becoming a preacher part had a path I could follow and led me to Duke University, but being a minister required more “faith” than I could muster. The path to becoming a politician required dreaming. Having lost my faith and scared to chase dreams, I took a much safer path. Now I am beginning to be inspired to try making more effort to write. Yes, I have a huge obstacle – Multiple Sclerosis. But Since I can write at my leisure and when I “feel” up to it, my MS should not be an excuse to at least make more of a commitment to TRY! A 19 year-old building a team of supporters like Zack has while based in a creationism hotbed known as Louisiana and knowing that Louisiana politicians have a history for being a haven for honorable politicians (that is intended to be sarcastic) I feel he has an even bigger obstacle than I do with MS.

Zach has appeared on Real Time with Bill Maher, Moyers and Company with Bill Moyers, MSNBC, HuffPost Live, he has presented a TEDTalks as a Zack with Bill Maherguest speaker for TEDx at LSU (video link below),  and numerous other media outlets. He also won The Troublemaker Award for 2012 (link below). On Real time with Bill Maher, Zack put Wall Street Journal editorial board member and senior economics writer Stephen Moore in his place when Moore tried to tell Zack what his generations priority should be (video link below). How Stephen Moore did not lose all of his credibility after that appearance is a wonder to me!

Like Zach has had to find his way and is still fighting his fight, I am sure his success, so far, is the result of HARD work and dedication. I need to capture at least a little creativeness, apply a little work and some effort and even I may see some results. So I hope to make more effort posting and I also support an hope that Zack can accomplish his dreams since he does have a great start! Zack’s dreams are not selfish but on his path I hope he is encouraged by the fact he is inspiring others (including me) just for trying. Best of luck Zack as you pursue your dreams!

Blogging is not free!  Please help cover the costs!

Once the $150 a year cost is covered – 50% of EVERY donation will be given to a charity (the charity will not be ME)!  😀

href=”http://www.youtube.com/watch?v=7VuEKUmnUiU”>http://www.youtube.com/watch?v=7VuEKUmnUiU

http://www.troublemakeraward.org/

https://www.youtube.com/watch?v=fwVYT3_ewzQ

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I Miss Typewriters

Underwood Typewriter

1st Sony WalkmanMy freshmen year of high school was the 1979/1980 school year. For many people this feels like recent history, while youngsters think of this time as ancient history. One thing was ancient – technology. Technology was still quite primitive by today’s standards. Let’s try refreshing our memory or learning a little about the simplicity of this less technological time in life. This was long before life with the internet, laptops, or home computers; word processors were advanced technology. Sony Walkman and cassettes were just beginning to make music more portable and a tablet was not electronic – a “tablet” meant a pill or a spiral notebook. I do kind of miss those days. 

Part of my high school experience included teachers requiring important papers to be typewritten instead of handwritten. Sony Console TVToday, computers and printers are almost as common in homes as console color televisions in the early 80s. This was usually an issue for me since our home did have color tv, but did not include a typewriter. I had an uncle that had an old Underwood typewriter and my parents would haul me into town to borrow his typewriter and lug it back to the house. It weighed at least 30 pounds and was a workout to transport. It crossed my mind sometimes, what do other students that did not have an uncle with a typewriter do? I do not remember the library having typewriters for public use like they now have computers.

The importance of proofreading was vital before beginning to type any paper for school. I followed general typing rules that this “texting” generation is unfamiliar with, rules like: proper use of capital letters, two spaces after the punctuation at the end of a sentence, indenting, double space between paragraphs, and proofread, proofread, proofread before starting, because there was no spell-check other than the teacher. My O.C.D. ruled out using liquid paper to cover mistakes. Just reaching this point of this post I have completely rewritten several times and if I were using a typewriter would have killed several trees of paper rewriting. 

perks 1So why do I miss typewriters? I remember outlining and completing my thoughts before hashing them out and learning perks2to accept my final draft. I sometimes re-read my own posts and edit long after they were initially posted. I am no longer able to accept my final draft! An old typewriter similar to my uncle’s was a central part of the book/movie “The Perks of Being a Wallflower” and this movie brought back a great deal of nostalgia.

 Watching “The Perks of Being a Wallflower” reminded me of my high school experience more than the-perks-of-being-a-wallflower-hollywood-movie-wallpaper05any other movie that I can remember. The character Charlie was struggling to find his identity and where he fit in. He was also dealing with a dark experience he was unable to process all while remaining a little naïve. Charlie and I had a lot in common. I was led to believe that “Less Than Zero” was supposed to be the book/movie to reflect my generation’s experience, but it missed representing my life completely! “The Perks of Being a Wallflower” is set in an early 1990s, middle-class, suburban area of Pittsburgh; making it much more relatable to the backdrop of my rural, small town life not too far from New Orléans than that of the wealthy Los Angeles lifestyles of the character in “Less Than Zero”. Maybe my high school situation of the early 80s was not so different than that of the 90s or that of other’s high school realities.

I have rated over 1,650 movies on Flixter.com. That is equivalent to approximately 4 months of my life doing nothing other than watching movies. the_perks_of_being_a_wallflower_quote_1This estimate does not count time watching tv or movies I watch repeatedly. This does not qualify me as an expert on the topic of movies, just VERY experienced. As much as I enjoy trying to express myself through writing about the perks 3random thoughts or ideas that ramble through my brain, this also does not qualify me as an expert at writer – just experienced. As I see movies and find ways that I relate, I search for MY story that others would relate to, enjoy or be inspired by one of my stories. With my Multiple Sclerosis and how it affects me cognitively, I have the additional pressure to record my stories during the times I feel well enough to write and my mind cooperates. I also hope to be around when someone decides to appreciate my little stories and thoughts.

Blogging is not free!  Please help cover the costs!

Once the $150 a year cost is covered – 50% of EVERY donation will be given to a charity (the charity will not be ME)!  😀

 
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Finding THAT Connection

Sometimes most all of us would benefit from a good whack in the head to be reminded that we need more perspective in our lives! Lazaro 8The whack that just caught me upside my head was Lazaro Arbos and his American Idol audition. Lazaro, a 21 year-old ice cream scooper from Florida, has had a stutter since age 6 that has deeply impacted his life. I cannot imagine the courage it took for this brave young man, with a pretty severe stutter, to sit in front of television cameras and share his story. By the end of the audition he had tears of joy dripping from his chin – and so did I.

What an indomitable spirit he must have! His family immigrated to Florida from Cuba when he was 10 years-old Lazaro 16and his parents still speak Spanish. This would make me guess that he learned English well after the stuttering began and is now bilingual. Reared all of my live in the United States, at 40 I immigrated to Colombia, South America, and have had GREAT difficulty learning the local language of Spanish and I do not have a stutter to overcome. This young man has whacked me in the head reminding me I have to stop making excuses and learn Spanish or this inspirational moment will have been wasted.

At one point he says – things that “normal” people would think are so easy becomes so hard for him. I do not doubt that a lot of things are more Lazaro 7difficult for him, but I hope he misspoke using the term “normal” people in a way that could exclude him from being “normal”. My brief moment of sympathy was quickly followed by shock. This guy that just inspired not only me but thousands, does he feel he is not “normal”? Watching it the first time, I just wanted to give him a big hug. Watching it again, I wanted to shake him and say, “NEVER feel you are not ‘normal’!” But the confidence, courage, strength and intelligence he must posses to be bilingual while having a stutter and giving such a heartfelt performance convinces me, and I hope, he just misspoke.

I am such an easy target for a story like his because I have a real empathy for his situation. I had hearing difficulties as a lazaro 14child and out of a necessity created my own language. It was actually the official language of the little world I lived in – within my own little head. Lazaro’s mother Gisela says she often had to speak for him. My little world also had a translator, my older sister Darlene. People would listen to me jabber on and on (one thing that has not changed about me), not understanding a word, then ask Darlene, “What did he say?” Then she would relay my message perfectly in English. She was really the only one that truly understood me, having to also translate for Mom and Dad at times! At age five, I began to learn to speak English, the language of the people in my new world. I no longer had to live in my isolated world and began to FEEL more and more connected to this much bigger world outside my little head.

My translator Darlene & Me

My translator Darlene & Me

Acting as my translator, Darlene and I built a unique bond. Now we are adults, we often argue and fight. In thinking about this I have come to a realization why – I struggle wanting her to understand me to help translate who I am to a part of the world that does not understand me – my family! Our rifts are about religion, politics, as well as lifestyle. While she and my family remain very religious, conservative, and content; I, on the other hand lost my religion, tend to be liberal (I really think I am what they now call a Progressive), I am openly gay and live what I have convinced myself is an adventurous life given the constraints of a life dealing with limitations because of Multiple Sclerosis. So I try and hope for her to understand me so that she can translate so I can feel a connection with my family again. We do make real effort, but for now… I am still jabbering on and on in my own language and feel I NEED that ONE person that understands me to help the world (outside of my little head) understand me!

Seeing this video surprised me because I felt I was witnessing Lazaro’s moment, the moment he found “MUSIC” was his translator and people beyond his Lazarofamily could understand and connect with the world he has been isolated in for so long.  He found his Darlene!  I think he FEELS he has connected; others see, feel, and understand his world a little more. Not only is music his translator – he sees that it is an APPRECIATED talent. He has found some of the respect he has craved and deserves.  Feeling this connection has to be incredible! He has been actualized as a member of the bigger world. The talent that until now has been comfort in his isolated world can now be shared – WORLD, MEET LAZARO!

http://www.huffingtonpost.com/2013/01/18/american-idol-lazaro-arbo-stutter-video_n_2501225.html?ncid=webmail19

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