10 Easy, cheap, and manly things you can do to make the life of your chronically ill guy friend a bit better.

First of all we are guys and don’t seem to want your help, can’t ask for it and wouldn’t know how to if we did, but we do need it, just look at us.
Just like the girls we don’t need a lot of money spent on us and would probably only feel guilty if you did, after all we are or were the breadwinners. Christine at BYDLS wrote about being thoughtful, we’re guys we don’t do thoughtful; at least not in public still help and company are appreciated.
Being a guy and being chronically ill is a double whammy, when asking for help it’s hard for us to inconvenience you and even harder for us to look like we need help.
I stole this next part from Christine Miserandino at butyoudontlooksick.com just copied it and outright stole it thanks Christine you are an inspiration to us all.
The hardest thing about chronic disease is that it is chronic. I had a friend who had a really bad flu and she received flowers that very week. With me – since I am sick all the time… I get nothing. Am I any less sick, sad, frustrated, lonely, or bored. NO, I need your love and support now more than ever. When everyone else forgets that I am still in this struggle with my illness….. please remember. It didn’t go away, I didn’t forget. I need you to be my friend.
So like they say at Nike:

Just Do It!

So here is my list enjoy and add to it in the comment section.

1. Come spend time with us you don’t have to do anything just sit there, we are guys we don’t need to talk about “It” or anything else for that matter if we want to we will, otherwise just be with us.

2. Take us somewhere not something big just to Lunch some of us can no longer drive and are prisoners in our own homes. You know us, you know our restrictions so maybe rock climbing is out of the questions but all you can eat wings at Wings R Us would be awesome.

3. We had big plans to fix the drippy faucet or repaint that wall covered with dark blue paint and can’t do these things anymore so come over and Sneaky Pete help us to do it. Remember we are fragile beasts and have to think we are still capable of doing things so at least let us think we are. Oh and don’t just show up with the supplies and expect to get to work we will let that unintended insult fester. Hint: we must shop for our own supplies at the Hardware Store.

4. We already have the gadgets surprise us with a season of one of our favorite series or movies, software, etc.

5. E-Gift Cards to I-store (blech) or Amazon Digital our gadgets need filling this is where we do it.

6. Guys don’t do Sudoku we do math problems and Crosswords keep that in mind and pick us up some Puzzle books, we don’t have the attention span for the ones with one kind of puzzle so get the mixed ones. We like our puzzle books like we like our nuts easy to chew mixed and with the answers at the back.

7. Magazines don’t let us fool you most of us don’t give a darn about car magazines we look at them to look cool in waiting rooms, secretly we would appreciate People, US Weekly, or other pop culture mags.

8. Lotion, lotion, lotion, this is one of those things we don’t get for ourselves and to tell you the truth most of us will go around looking like a lizard before we even think to moisturize. As a guy buying lotion has a certain connotation, so going to the store to pick it up can be embarrassing.

9. FOOD not the hospital stuff, but real good American junk food, even just an order of McDonald’s fries will make us swoon, especially if we have been inpatient for awhile. Check with our doctor and the hospital to make sure this fits in to their dietary plan then ignores it and get us some fries.

10. Just ask, we are not likely to ask for any kind of help be it physical or psychological so just ask if we need anything we are likely to say no but ask anyway.
You Never Know

Mayo Clinic Jacksonville

Good morning children,

I've done my inpatient time at Mayo, and let me tell you first it is an entirely different level of care patient oriented and comfortable.
Room Service you don't order your meals with a stubby mini-golf pencil on a card with one or two options you have a full menu with great and worldly selections. There are Perkins all over the world right.

Well anyway after two days of sleep deprivation and food restriction (only allowed 2 meals), together we pulled multiple nasty syncopes out of me which showed nothing on the EEG.
My Neuro case managing Doc Dr. Shih sent my files over to the Neuro Oncology guys who found some lesions on my brain.
I am going back on the 12th, 13th, and 20th for more autonomic testing and Doc chats.

Sir Ladle duLaq

A brave knight defending his family and aiding the helpless once carried a shining silver ladle of peace. With his mighty ladle he protected the land and all its inhabitants. He protected the children of the land from bullies and their own bad decisions with the aid of his mighty bat and glove. The knight protected his family and friends with his steely will, never ending strength and superior wit and wisdom coming to their aid in their times of need. He protected the world with acts of kindness and strength asking nothing in return.

Now the knight has been dishonored stripped of his ladle and left with naught but an ever decreasing handful of plastic spoons and the occasional spork (for jabbing at stuff). With his world left undefended and his manhood and lust for life gone the once mighty knight has struck out upon his trusty malamute Chewie to right the wronged and help the helpless, that is as long as he has a spoon left, otherwise he is bedridden and napping.

To be continued.....

Disability Denial Letter

The following is the letter I wrote to Mutual of Omaha as a appeal against their decision to deny me Long Term Disability benefits.
Please use or comment on it anyway you see fit.


Vincent Colucci

xxxxxxxxxxxxxxxx
Ormond Beach, FL 32174



October 21, 2011



xxxxxxxxxxxxxxxx
Group Insurance Claims Management

United of Omaha life Insurance Company

Mutual of Omaha Plaza

Omaha, NE 68175



Appeal against denial of Long Term Disability benefits



Dear Xxxxxxx


My name is Vince Colucci, and I am writing this letter to respond to the denial letter of disability benefits that I received on July 13th 2011. My Social Security number is xxx-xxx-xxxx and long-term disability policy number is .xxxx-XXXX.


I am no longer represented by council as they have told me it would be irresponsible for them to handle my case seeing as my payment from your Company would be so small that their cost and fees would be such that after reductions due to SSI payments there would be very little left.



Please allow me to refresh your memory as to my case. On February 4th of this year I reported to work and soon after clocking in began to hear the sound of a nonexistent music box, I blacked out and lost control of my arms and posture. When I came to I felt an incredibly painful tingling as though I had been struck on the funny bone over my entire body. When I was able to come to fully and be aware of my surroundings I had thrown my phone and papers I had been holding across the room. I was incredibly frightened and went to the emergency room. There I was told it was a syncopal event and we all have them from time to time.

Upon returning to work on the 7th I worked my normal day and felt tired but relatively normal, I had a lot to catch up with purging claims files 180+ bankers boxes and fulfilling my duties as to retrieving radiology charts for the facilities on my way back from our Daytona Beach facility to our Holly Hill facility I felt strange and a strong need to cough worried I pulled over to a turn lane and put my work van in park. At that time I coughed lightly a few times and began to tingle all over, then blacked out. When I came to I felt my right hand uncontrollably slapping at the passenger seat and very weak and disoriented. I called for some reason the Member Services Dept. of FHCP and told them what was going on also that I thought I could drive the quarter mile back in. Before I could get very far I approached a red light at which I blacked out again coming to very tingly and with a dull muscle pain all over my body.

Stupidly I continued driving and returned to the facility a very lucky man. I then called my supervisor and asked her to contact my wife and have her meet me in the parking lot to take me to the ER. I was admitted to the hospital several tests were run and I was released.

Since this time both my Primary Care Physician Dr. Wesley Driggers and my Neurologist Dr. Mary June Derbenwick have stated that I can no longer drive, or return to work and that I should observe seizure precautions.



It has now been over eight months since I have been allowed to work at a job that I loved and was good at. I am no longer able to do the things I once enjoyed, walking my dogs, bike rides, cooking meals, or even taking walks by myself. I am now under increased care of Psych doctors as the depression and anxiety of no longer being a competent and confident adult has become too much for me to bear.

I continue to have as many as 4-6 syncopal events a day and in the interim feel weak and bone tired as though my entire body has been overused and abused. I spend much of my time in a neurological fog and feel lost and confused. I can no longer take an active roll in raising my two sons and feel as though I have in a way abandoned them physically.

The mounting stresses of the great financial loss my lack of salary has placed on our family have caused great problems in my marriage and we are very close to foreclosure on our home and having trouble meeting general obligations.



The Doctors still have no answers for me and my condition is worsening starting to effect my digestive system due to peripheral neuropathy and making me less capable of living a normal life much less working. I have requested and been granted a referral to the Mayo Clinic in Jacksonville FL at the end of October and hope in vain for some answers then.



I beg of you to please reconsider my claim as the loss of income has disrupted my life and that of my family and may cause us to lose our home. My disability has become increasingly taxing both physically and mentally and I hope you can understand the situation I am facing as well as the situation of my family. The Long Term Disability Plan that I had held for many years can come to my families rescue in this our time of need.



I once again appeal to you to consider my request on any grounds you deem appropriate and please let me know if you need any further documentation from me or my many physicians.



Thank you for your time I am looking forward to a favorable response and working with you in the future to satisfy whatever questions or documentation you may require.



Yours Truly,





Vincent Colucci



Transcribed by Diana Colucci

Port Chuck, Tea Parties, and Barbecue

Being a huge fan of the Soap Opera General Hospital (I named my sons Luke and Spencer) I of course had to get Diana and I tickets to see the band Port Chuck, made up of four guys from the GH, at Universal Orlando. Slowly but surely this as all things became a Colucci Family + Caravan of hilarity as First my oldest sister and mother then my "brother" John joined in which is great because then John can drive.


The best thing about John driving is watching my mother trying to climb into his bigger than big truck, this would be easier with a stool but is funnier with me lifting her up like lifting my malamute Chewie up onto the our bed while commenting about how big my boner is. You see mom is a youthful 70 something, I don't always know my age without doing the math so don't expect me to know anyone else's. Anyway digress is my middle name, well really its Raymond which was my dad's name but he is dead so I guess its not his name anymore. Damn back on track!

OK, back on track, as we near Orlando we decide to get dinner at a great BBQ place that serves 3lb buckets of meat at a destination called Rt 42 or 46 or something like that. As we pull up we see 40,000 cars in the parking lot, well maybe 200 and signs that a Tea Party Event was in full swing. I know, I love tea too in fact a good cup of double strong Earl Grey sounded perfect right then. pulling into the parking lot we asked one of the guys in the golf carts if he thought the restaurant was busy. Woot no, so park we did. Time was running short but Herman Cain was in attendance and I am a huge fan, I mean this guy ran Burger Kings and Godfather's Pizza as well as the National Restaurant Assoc. and one of the branches of the Federal Reserve, a guy I can believe in and who knows something about the backbone of this country, SMALL BUSINESS. Anywho, Carol (sis) got to shake his hand, she butted in while they were trying to set up his interview for local TV, she is that way. I didn't get to shake his hand but got to cheer, mostly by myself during his interview in a hope he would hear me and sweep me up in his campaign bus and drag me across the country to cheer behind him during interviews. I could be good at that. Well since I didn't get a handshake I licked the handshake of Carol's hand and haven't washed my tongue since. Dinner becomes less important so I won't mention it except to say the 5 of us shared two buckets of BBQ which was awesome.

On to Universal, I probably should have brought a wheelchair that was way too much for me and I payed for it for 5 days in bed with the worst syncope event yet lasting over 5 minutes. The concert was great and Carol acted like she was watching the Beatles in 1963 screaming and crying while I went from crowd to sitting on a stoop so I could black out in peace, then I would get up and go back to the group and be part of the fun.

I want to thank Steve (Jason Morgan) Burton for his wishing Carol Happy Birthday in response to my tweet. Carol turned 50 and in no way looks anywhere near it.

After....... feeling too "drunk" to go any further so maybe soon I will tell more about this night.

Uncontrollable Crying and Oh What The Hell I don't Know

*any italicized comments should always be taken as though they were said by Craig Ferguson*

Good morning class today we will talk about the evolution of the gelatinous tree fungi of Southeast Asia, or to put it more precisely yesterday was great until it sucked!

Anywho Yesterday started out great was having a fun day playing on Twitter, Twitter has the best Angry Birds, and everything was going great.  I even called my mom and chatted.  I know, it's like I was drugged and dragged off and replaced with myself from ten years ago.   That was when everything changed!  On Tuesday for no good reason I went to see a pulmonologist one of my favorite doctors ever Dr. Wahba Wahba.  Being a Pulmonoligist he treated my syncope like a pulmonologist would.  Stating you only cough for two reasons (what the fuck?), he prescribed me something for heartburn which I don't have and THE DEVIL Advair.  An inhaler that looks like you are sucking on a pack of birth control pills really gave me a great feeling of security as to its efficacy. I had had two bad days already on the pill and was feeling the effects of a steroid while feeling as though this was not helping my breathing at all, yet I sucked on.
Suck on young man go into this brave new world sucking on a lavender disk and bravely fight the servants of evil.

I worked out a little in the morning had a nice healthy salad and settled in to watch the rest of ROOTS with the Commentary on.  Slowly I could start feeling it happen I began to get hot and started to feel the dizzies coming on. WHAM! small cough and out I went full blown syncope came to feeling the worst ever, shaking, that dead feeling all over, and the feeling as though I had hit my funny bone over my entire body.  Not only was this the worst post syncope ever it lasted the longest.

Silly me I thought this would be a good time to call my doctor and report this new found hell to him.  That's when I start crying and I don't mean a tear of sadness and woe swept down my cheek to come to rest below my nose as though Bambi's mother had just died, this was full on what the fuck they cancelled Sports Night Crying.  I mean uncontrollable unconcievable mind numbimg sobbing, and the best part I didn't fell any reason to cry.  It was like a switch was flipped that is when the nurse got on the phone, "calm down and got to the ER".  Yay an ER visit.  I called Diana still sobbing and told her to get home and take me to the ER.   Off we went as my eye and mouth started feeling droopy on the left side and my speech started sounding funny and my left side began to quake like a california bowl of Jell-o.

By the time we pulled up to the ER I had started to feel a bit better but still felt weak on the left side walked in and said I think I had a stroke.  That is when they push a clipboard and pen at you and say, "fill this out, while shoving the leg rests of a wheelchair at your calve muscles without warning and order you to, "sit down".   Now it's abouut 45 minutes of waiting followed by taking my name symptoms insurance proof blah blah blah blah.  Back out into the waiting area I go to sit amongst the half bind drunk hobo and the Krumps with their new baby Foghorn Sirencall Washington wailing like a sheepdog in a testicle screw. Yay, I hear my name and get shoved down the hall in the wheelchair that definately is in need of a throwing out, and brought into an exam room.  Treat time Nurse I Spilled a Jug of Urine Allover Myself in the First Five Minutes of My Shift and Everyone Shall Hear Of It, (long name she must be Swahili they are white right?) came into the room and starts hooking my up to IVs, BP cuff, finger dolphin pulse oxi thingee, and sticky ekg leads. Yay more glue the patchy chest hair had finally grown back.  Doctor Mohammed walks in yells at me for not having my story straight, sorry I am a little confused isn't this Sizzler where's my freekin' steak. and after finally being annoyed by me enough wanders off mumbling something about coffee.  Four hours and one CT scan later he comes back mutters something about my CT looking the same as the last one and wanders out.  OK now what wait around until I die or find a nurse to pee on.  I chose wait and in comes the billing chick while I am still hooked up to shit,  "your co-pay is 75 dollars and how will you be paying for that today?" Diana pipes up all perky, "bill us!", and off Billy the Kid goes.

I should know better when you are an unexplained syncope sufferer everyone likes to treat you like you are in the way and crazy, and every doctor has the same story,  "I know what your problem is, I saw it once in a patient when I was studying to be a doctor/plumber/lumberjack in Tikreet/Mumbai/Garden City, just take this, antacid/decongestant/Phillipino black market birth control pill, and it will go away."  Uh, no thanks doc I think you're wrong and that is not the problem.  They just love hearing things like that and a little added it's above your paygrade makes them wander of stuttering in tongues.

Doctors

So, went See my Personal Doctor yesterday he seems much more frustrated than I am, well I get to live with it. He really seemed to love the fact that the neurologist and the seizure specialist just wrote me off and washed their hands of me.
When you have an undiagnosed syncope issue (passing out) you get used to that kind of treatment. You go to the ER scared to death and they say ah it's just syncope and send you on your merry way. Well five months later with no work, driving, or any activity in which you can possibly hurt yourself and daily blackouts that feel like you are dying I guess you just get used to living with it.

Talking about living the 4th of July weekend is coming up and I used to be a pyrotechnician and special effects guy so needless to say depression will set in in the next week and I won't be very fun to be around. Smelling like hell and being covered in black powder grease and small burns was the best feeling I have ever had. even worse now that I have my arms fixed and can swing a hammer and such I can't work because of the freekin' syncope. NO BLACKING OUT ON THE FIRING LINE! oh well Maybe I'll sit in the house and comfort the dogs if any pyro is shot, in this years drought, at all.

Here's the Story......

I love my job, I was told I was born to do it. I got to lift heavy things which is good because I am "strong like ox" and got to do a lot of filing and had complete control over my days and what I did.

All that ended shortly after 8am on February 2 of 2011. I sat down in my office and checked in to work on my computer, when I began to hear a music box playing louder and louder I got confused, there was no music box. I felt my body stiffen my vision go and had no control as I threw my phone across the room. Coming to I began to tingle all over and became scared shitless. I have done a lot of scary dangerous things in my life and never felt like this before. I've clung to rocks at the end of a jetty while 15 foot waves crashed over head, been a pyrotechnician, got in bar fights for fun and jumped from moving cars. Nothing felt like what I was going through this morning. I think I called my wonderful boss Laura first and told her I needed to go to the ER and then called Diana my brilliant wife.

See here is where it all goes downhill I described what happened to the nurse, D,r whatever in the exam room and they all just looked exasperated like I was wasting their time and resources. They told me I had a syncope episode slapped me on the but and sent me on my way.

I went back to work a few days later and while driving to one of the facilities felt an attack coming on luckily I could pull over and get in the turn lane this time I completely blacked out and woke up with my right arm slamming into the passenger seat over and over uncontrollably.

Needless to say I have been out of work now for 4 months can't drive am not able to ride my bike or really even take walks as I can pass out and hurt myself.
I have sometimes as many a 6-7 episodes a day and if I go a few days without having an episode I become a monster and you better stay the fuck away from me.

This is just the newest problem though I have suffered since around 3rd grade with General Anxiety Disorder GAD best described as having that feeling you get when a cop turns on his lights and siren behind you and your stomach drops to your ass for no particular reason.

Panic attacks were a considerable part of my life and ruined my ability to be a good student and destroyed much of my life as a person. With GAD often comes Agoraphobia and I didn't like people anyway so I guess that was OK.

Parents and schools didn't understand this and just let me suffer, you are smarter than this we know you can do it BLAH BLAH BLAH BLAH FUCKING BLAH.

Well anyway the panic attacks are few and far between but much worse when they do happen thanks to medication.

My parents got a divorce after somewhere around 50 years or so, who knows if they were ever even married and I got my dad who was a bilateral amputee due to diabetes. Of course he had cheated on my mom the whole time they were married and pretty much lied about everything. We found out way more than we should have about him after he died.

I went in to wake him up one morning after he had lived with us for 4 years or so and he was dead, I will never forget the contorted face that greeted me when we turned him over.

I thought I was doing fine then it all started; go to work come home take 2-3 Valium swallowed down with three fingers of scotch and pass out until I had to work again, rinse, and repeat. After months of this I was done I could not see going any further so I tried to have myself committed, they wouldn't take me (there ego take that) so home I went and took a few weeks off of work with the promise of seeing my doctor and a Psych eval. with enough meds and counselling I came through that mess and got better.

Somewhere through these times after, before, during, I had some surgeries to fix my nearly useless arms bi-lateral ulnar nerve entrapment releases and carpal tunnel releases.
Nobody seems to understand the whole I have no idea of time over the past few years and could not tell you when things happened.

My childhood was filled with pain as well I suffered from Severs(sp) Disease and spent time on crutches and could do nothing but walk flat footed from 4th grade through high school. My wonderful mother of course doesn't remember any of this being preoccupied with my alcoholic little sister (who I am not to call a slut). Mom likes to say she never gave up on M. what she doesn't realize is she forgot the rest of us. There is a long period of time where I don't have any memory of my family at all and there are few if any pictures of me from this time and I mean years.

Well after dozens of tests and seeing multiple Dr.s I am no closer to a diagnosis, 3 percent of ER visits present with Syncope issues every year and of that over 30 percent have recurrent issues, now I don't feel like looking this up so don't quote my numbers but they are close. and of that 30 percent some never find out what is wrong with them.

I still can have multiple events a day and never go for more than 2 days without having one.

I don't have much left to me I can't drive I can't work, all the things that I enjoyed and defined who I was are gone. Still though I am Father Husband and Friend so reach out if you need a hand I will be there just try to catch me when I fall.