photo credit: http://nemovalkyrja.deviantart.com/art/Adrift-and-At-Peace-185304334

This is when nothing can go wrong and our world is at peace.

It’s when you let the wave of life, crash over your head and lose your way out, praying the next decision you make isn’t the last as this pressure could make you lean the wrong way out of anger. Those moments expose a weak, bored and generically stagnant home life. This is where catastrophic failure is almost immanent, when everything pisses someone off, mid fight someone forgets why they are fighting and it’s such a waste of a fight that someone gets angrier because it’s still happening. This is where nobody wins and  all parties come crashing down.

Once recognized as a pointless fight, you need to abort all aggressive actions and dive face first into a passionate moment in which wild, filthy. rough sex, deep staring moments and a soft touch, conquers all. No argument can stand up to this animalistic need that bottles up as a fight progresses. It’s a game changer in which everybody wins. Most people cannot pull a crazy turnaround from fight to freak like this but if you think you can, just try it! Worst possible outcome, you go right back to fighting. If it works, you will be floored.

“Love conquers all” is the line I have heard but it never proved true, until now. I can have the absolute worst  day, receive bad news and have MS issues but once I have her arms around me, I am cool. She can sit down with me, break down what happened, my reactions, my feelings toward the problem, create a number of optional responses, and have me smiling all within roughly15 minutes. This is what my wife does for me off the cuff, daily. From what I know, this is the way it’s supposed to be.

Let sex fix what ails you or at least distract you for a while.

I’m sure a few of you had a feeling it was mine but I would never admit it because I didnt want to be judged but then last night I realized, thanks to my wife, I am proud of my writing and lets let it all out there.

Nothing will change except maybe the quality of my pieces.

Without question, I knew that something was going on (once again) but validation helps. By the way, no cure for this, exists. The only thing you can do is attempt training your eyes to not act in this way. I started reading the exercises and some professionals say its a complete waste of energy while others say, it might help. Promising, this is not.

Vision and balance are two things that I take seriously. They are also two things that I have grown quite accustomed to over my thirty years here. I need to walk and see with confidence so, I guess I will be exploring treatments. After polling the MS groups I am in regular contact with, I have found that a rather large amount of people suffer from this, also. Updates to follow…

(If the above images bothered you while reading this, you have a taste of what reading is like for me.)

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People generally applaud what Petie does for me. Until a very confused individual decided to make it his goal to yell at me for Petie going to the bathroom in a small patch of grass around a tree in midtown. I took an entirely new approach to this and completely ignored him until Petie was done. Mind you, as this guy continues to yell “Hey guy, HEY, YOU CANT LET YOUR DOG DO THAT! HEY” I let Petie do his thing and pull out a bag to cleanup after him. I look up at him and said “are you talking about MY dog, because I clean up after him, always?” His volume dropped and in an embarrassed tone he said “oh, ok” with zero appology.

I bagged up Petie’s present and tried to offer it to this guy bu7t he boarded a bus and didn’t reply to me about the offer. Petie is always wearing a Service Dog vest with clear markings. I always clean up after him and what really bothered me was how loud this moron was and that he really thought he was going to get somewhere by yelling at me.

For the first time I can think of, I didn’t yell, get really upset or really even get into it with him. It was far funnier to completely ignore him until Petie was done and then discuss. Petie is a very finicky pooper, so to ask him to stop halfway in, is asking for a problem that I wanted nothing to do with.

If you see something, say something but dont be arrogant while on the phone trying to be a big shot.

My little (26 year old) cousin was marrying her longtime love, Alex and it was the event of the year, held at The Ritz Carlton in Key Biscayne, Florida. For those of you that have not had the pleasure of staying with the hotel, please look into it or find someone to put you up for a night or two. Its an experience to say the least. For example, the last time I stayed with them in Naples, I was still smoking and drinking but in the middle of the night, I ran out of cigarettes and went to the front desk. I told them my situation and they opened the hotel store just for my date and I to do some drunk late night shopping for smokes and whatever else looked interesting. I truly don’t know where else this treatment exists.

Such fond memories don’t leave your mind, especially when being confronted with the the polar opposite. The opposite treatment is precisely what I experienced in Key Biscayne. It began when my wife and I arrived and went into our room for the first time. We thought it would be nice to go out on the “balcony” only to find that it was six inches wide. Truly uncomfortable, to say the least. I was willing to accept it since I thought maybe this was what everyone had. That was, until I saw everyone elses that were roughly four feet wide and covered in chairs and a table for relaxing and getting some air. To top it off, I then heard the ventilation system outside the window (especially the broken one)and saw that ALL of the buildings air ducts were outside our window (video below.) Loud and foul smelling sums it up. My next step was to speak with the manager on duty and share this very video.

This was not an awkward moment for me as I am very open with issues I run into. I told the manager (Mario) that the room had a non existent balcony, loud noises directly outside the window, terrible smells from the kitchen and honestly, this room was well below The Ritz Carlton standard. The manager understood, promised a swap and agreed to comp the room as it was unacceptable. These were the promises I was given on my first night. For $399/night you would expect to never have to go through this.

The next morning around 10:30am I went back down to the front desk to find out when we would be moved and I was given the run around. The excuses made sense as this was obviously not the first time they have been down this road. Even though I knew it was a lot of excuses, I gave them the benefit of the doubt and waited.

I could only sit anxiously until 3pm and returned to hear the next chapter of their story. “It’s taking longer for late checkouts and your rooms happens to be one of them…” This clearly did not come as a surprise and according to the manager the room should be available by 7pm which is when I need to be ready and down at the wedding.

The empty promises continued and we were still being fed the story that by the time the wedding is over, we will have “a new beautiful room, awaiting” even though I knew this was bullshit. This was where I gave up for the night, had a great time at the wedding and returned to go sleep in that same room. In the back of my mind I decided that I would stay in this room, keep track of the events and have the final confrontation before I left Florida on Sunday morning.

After brunch the next morning, I walked up to the font desk and the manager on duty saw me approach. Another customer service rep asked if there was anything she could help me with and I took a deep breathe to make sure I got every last detail out. As I began explaining every detail of the painfully long detailed story she looked over to the manager who yelled over “COMP BOTH NIGHTS!” and I just sat back and smiled because I finally got them to understand. Before I walked away, money was returned to my credit card and I had a paper receipt for the transaction, in hand.

The end result was the right move on their behalf. The part that was a complete drop was that they made me jump through hoops prior to the resolution and I was clearly ignored due to my age. If I wasn’t so persistent I would have been left with a bill for a room that was sub-par and treatment to match. Money is just that, but memories cannot be refunded and my wife’s first stay at the prestigious Ritz Carlton was a disappointing one, at best.

At this point, the corrective action I would like to see would be, an invitation to stay with them for a weekend to try and show my wife what it is like to stay there, the right way.

Updates:

• I received an email approx. 8 minutes after posting this article. For transparencies sake, I emailed this woman on the 26th to try and file a complaint. She never returned my email until, 8 minutes after posting this complete with hashtags. Coincidence, you decide…. Regardless, i have left her two messages since her welcoming email that requested I call or email to speak with her.
• I called today 3/29 and spoke with her co-worker Rob and gave him the entire run down. He took many notes and said he will speak with all involved parties including Alicia and get back to me with a resolution hopefully, by the end of business, Monday.
• Alicia was able to return my call roughly 10 minutes after Rob. Alicia will be discussing all details with Rob and the management team and getting back to me. Something good will come of this, I am sure.

#Ritz_Carlton #RitzCarlton #AgeDescrimination

I just had a very upsetting experience at Rite Aid Store # 4964 at Grand Central Station in NYC. My privacy went out the window with an arrogant pharmacist using an 8/10 volume level. I was appalled and confused by this treatment and her explanation was it was somehow my fault and nobody was around. Excuse me? You cant see people so they cant hear you? Small aisles and tight spaces means voices travel. Case in point, my wife was not at the counter with me but heard it all happen, in detail. My current vs. old prescriptions and my uses for drugs are items I do not ever need discussed in a public forum, such as Right Aid.

If you are familiar with me and the way I act you will be floored that I kept my cool and handled this moron in the most professional of manners. I politely asked her why she was screaming my information and why my previous prescriptions were in question. She attempted to make this my fault to which I politely laughed at her and told her to call me once she cleared it all up. My wife and I left the store and she began trying to calm me down and as she stated “When you are this quiet, I know someone is about to have a bad day” she was quite right.

I got home and started to research the proper people to speak with at the corporate office. While doing so I came across an online chat with representatives from Right Aid. Perfect solution to avoiding phone calls that go nowhere. I gave them the entire story and they were extremely apologetic and filed a formal complaint on my behalf.

This is far beyond the normal point I would stop at and it was because this woman crossed a line that nobody has previously crossed. Within 48 hours I had the District Pharmacy Manager on the line who was beyond shocked by the ignorance of his employee. I have since returned to this store to fill my monthly medications and I can happily say, I have yet to see Safa there and I am glad nobody else will need to feel the way I did.

#RiteAid #HIPAA #privacy #FixThisShit

Quite similar to that feeling is everyone’s opinions of what I should really be doing for my disease, treatment or drug intake. It’s amazing to feel all of the support and concern I get from my friends and loved ones but can be very overwhelming.

My frustration is that since “you” did not go to school for almost a decade, spend a quarter million dollars on an education or receive some recognition for being the top of your field (in relation to Multiple Sclerosis) but my doctor, has. Those are part of the reason why I blindly trust what my doctor tells me to do regularly.

It’s not negotiable since treatment is what will keep me from progressing faster. Along with treatment is my trainer and she kicks my ass twice a week. The better built I make myself, the longer I will last. It’s an unfamiliar path and nobody really seems to know how to stop it, correct it and damn sure not cure it. Talk about a stressful topic! What they do know is,stress makes it worse. Symptoms are generally exacerbated within moments of a stressful time and as bad as things seem, they will usually get much worse. This is where meditation and therapy come into play. I have found a truly amazing individual who is also helping others I know. He is connected to life on a level I have never even considered existed. The forms of therapy he has me working on have greatly reduced my pain and drug intake to counter the pain.

I have already tried a couple different trial drugs and obviously if they worked I would not have continued “testing” them. It won’t stop my from trying the next one my doctor brings up to me, but I will say that even though they don’t work, the side effects are still troublesome.

I am scared, uncomfortable and in the dark. Imagine how you would feel with a sucker punch like that. Ok, stop imagining because its pretty terrible, I know. Hopefully this will be our year and a cure will be found. If not, at least stress is starting to get controlled.

UPDATE!!!!! So I just received word that

a) we got the place!!!!

b) we move a week from yesterday, fuck!

You read that right, we found a place we love and and we have an offer submitted.

After looking at 6 places last Saturday, we found a great place. It fits all of the requirements we assigned to this move. The only problem is the same one every resident of NYC has, we want more space.

The cool thing is that we all “want” more but we also make do with what we’ve got for, LOCATION, LOCATION, LOCATION! I always wanted a beautiful lobby and entrance to “my building” and now we’ve got it (actual picture of our building) We can both walk to work and part of that walk will even be together.

Thus far, my wife and i have lived in a 150-200sq ft apartment on the lower east side of manhattan. Near one of the hottest areas of New York city but after she moved in with me and Petie, time to move.

The next apartment was huge compared to the first. It also put us on the “nice side of Delancey” along with being in the heart of the hype. The best of restaurants and bars but I am almost 2 years without a drink and my wife is basically right there with me. Without drinks we get a quieter neighborhood and building. This place worked well for a bit until post wedding and we determined, we could step up, a bit.

Its been a couple of years, we got married and its that time of life again, new house. This time we are going to get into a nice, clean and new apartment right near our jobs. We have had enough of the craziness and would like to just walk a few blocks to work and bring Petie if we felt like it. I would also like to experience getting a box delivered to my house instead of the office. For that, we will have a door man. It’s a luxury I never thought we would be able to have. The last peice is being built as we speak but it would be a lot better if it was already there when we move in, a brand new gym. Exciting does not even come close to explaining it.

We will also both be able to walk to work and sleep in until 8am on weekdays as opposed to 6:30am wich we (try to) do now. We know it will not last forever but after the craziness on the LES and the lack of a kitchen for years, its time to experience how the other half lives, for a hot moment.

You are the reason I put it all out there. I expose what I think I would have appreciated being told or reading about back when I received my dx. I write these personal topics because I know they are reaching people who are not able to say it for themselves. People who are uncomfortable, scared and just lost. I write for the people who thought they were only ones dealing with this. It’s important for both the people going through this and also those who are unfamiliar with what actually goes on.

The only thing I dont write for is, sympathy. All I have ever wanted to accomplish with this blog is helping others, sharing my views and experiences. All I have ever wanted to do is help others and my writing makes me feel like I am finally in the right direction. Being in the Army, helped and being a volunteer Firefighter also helped, but this is something big.

I remember the first set of tears I shed the moment I was told, “I think you have multiple sclerosis” by a fairly uncertain and socially awkward Chinese Neurologist, who originally told me I was too stressed and prescribed me Xanax. Yeh, that guy.

So if that is what I had to deal with, I know someone had it worse. There is also a chance that “someone” may also be a private soul, that does not want to discuss this or just doesnt have a support structure like some of us lucky people do. Whatever the case, these people are out there and friends to some of us. My writing is for them.

Nobody should been left alone with only the doctors explanations and their own mind. It’s just not enough, people need information and strive to find answers. With a diagnosis, you constantly want answers. The issue I have is, what would the answers get you. I have had many unexplained situations in my life and looking back, I dont think answers would have improved many of them.

Sometimes what you dont get, is answers but it doesnt mean we cant talk about it.

I see a personal trainer twice a week and she knows how to make me sweat, professionally.  I have heard the same thing from all of the MS trainers “strengthen your core!” and that is precisely what I am doing. If you are wondering, yes, it hurts a lot in the beginning because these have been used for quite some time.

Yoga is also part of this new world I have been thrown face first into. If you ever think for a moment that Yoga is easy my guess is you have never tried it or are just plain doing it wrong. It’s a hell of a workout and really lets you know what kind of shape your body is (not) in.

I tend to laugh when I get hurt and because of that trait my trainer thinks I am generally stoned. I laugh when I lose my balance while Cher (my trainer) is testing strength levels in each leg. Laughing when I fall over, get dizzy, need a nap or whatever the case is how I mentally smile and cope with my issues.

Laughing is the easiest way to handle the generally disorganized array of issues MS brings to the table. It still doesnt explain why its funny but it helps.

Its taken a while to get here but the terminal feeling in my legs is the daily aggressive constricting pain I have.  The picture on the left completely represents how my legs feel (if they were lizards.) It’s in both legs and really doesn’t go away. Sadly the doctors only answer is to mask it/cover it up with drugs.

I would do absolutely anything to go back to a few things. First off, being comfortable in bed. I reamember what life was like prior to this diagnosis and it was just plain easier. One of the ways was geting comfy in bed. These days I am rolling over and over, stretching out and then curling up into the fetal position where I stop for a few minites. Under a blanket to just a sheet meaning hot, cold, hot, cold. I wake up shivering and other times soaking wet in sweat. Nobody can explain why and nothing really helps. The best trick I have learned is, Bamboo Sheets. Truly life changing if you to deal with heat sensitivity.

When I go to see my neurologist each month he asks “How is everything going?” and each month its the same answer because nothing really  changes all that much, The pain continues and presents itself in the exact same manner and location. The doctor is pleased because no new lesions have shown up but as for my quality of life, he is quite concerned by the pain. Narcotics are not a long term answer for me but for now they are out of ideas. All I know is that I need my legs to work and will continue to hurt and fight in the gym if it means I can keep walking.

I had what I think is my 12th infusion yesterday and the bad news is I feel much worse ever since. My legs are a mess, wobbly, unreliable and quite concerning. Other strange part is this is the first time I have slept after the night following my infusion and at length, about 10 hours. For me, a lot!

You name it, I have tried it with almost every pain medication out there. I think the spasticity meds work but I need to remember to take them but yesterday was the first time that i completely forgot to take anything for pain.

It’s a Good feeling.