Christmas · family · Uncategorized

Ghosts of Christmas’ Past

Wow …How do I begin ? Christmas was always my favorite Holiday and I tried to make it magical for my children. One of them used to say “I always knew mom was at it because the Christmas music was blasting” . That was at a time when Mondays were my day off and I was young and energetic. Those days are long gone , as are so many others.

When I was younger , when we moved to NJ , often times there was no money for gifts and I recall the year that I asked for the $1.00 paper cut out dolls from a second hand store …and I got it …along with an orange in my stocking and I was thrilled .

 

That I recall the year that my grandparents were with us , as was often the case, that my grandmother got a black eye wandering around in the night as she was often prone to do .

The year that I was 7 and (SPOILER ALERT) I realized that there was no Santa Clause because I went to say good night to my grandparents and all the gifts , that would be under the tree the next day, were in their bedroom . In those days gifts were not really wrapped and I was a clever child, after all .

The so many Christmas’ spent in Sleepy Hollow where my grandparents always had cracker barrel cheese and crackers and Trappist Monk wine jellies . I still picture myself there and can feel the joy and love .

When my children were young and I was up at 6am , or earlier , to light the light the fireplace and tree because I wanted to see their faces first thing . I worked a lot…Note to moms ..$$ cannot equate with time although I tried the best with what I had and I still do not think they had a clue how far I went to find just what they wanted.

To my very best Christmas memory, spent on an air bed in an empty dining room , with the person I loved most by my side .

 

Today , my family is scattered, or non exist ..I am disabled and don’t have a lot of time left . There is no Christmas here today . I am doing housework, or attempting to ..pain and disability have left me unable to sleep for quite some time. Merry Christmas to all and cherish what you have , for you never know when it may disappear .

family

And if I thought 2016 and 2017 were Bad Years …How life laughs at you

I had great hope for this year .I thought what could be worse than 2016 , 2017 or the past decade of my life .

Goes to prove how wrong you can be. Not even two weeks into the year I lost my mother , whom I had not seen in years , due to injuries that keep piling up and my inability to be of any assistance . The day she died ( guessing that I don’t mince words) it was pouring buckets and my spouse was at a party so he could not leave there to take me to see my mom. Even prior to the more significant injuries this year I could not travel or drive more than a few miles from my home . Injuries inflicted since 2013 have left me incapable of sitting , standing , arm use for extended periods ..like 15-30 minutes .

It bothers me that I was not permitted to have one personal item of my mother’s , which is slightly ironic if you have read previous blogs .

I now sit here waiting for my 4th MRI this year ..and until few weeks ago I thought I had gotten away with one .

This year I have lost further use of my duty ..any arm use or strength due to several more ‘accidental” injuries . I don’t know how someone can be so self absorbed that they don’t think Drs can put one and two together …

I have tried working out ¬†again, dieting to no avail and it is weeks before I actually can see an orthopedist ..I torqued my already damaged left knee doing side lunges the other day so I am bed bound. Thank the powers that be that I finished Christmas shopping prior to that incident . Actually , I have no plans for Christmas so if anyone knows a family of four who would benefit from a bunch let me know . I don’t know why I continue to care about people who don’t care about me . It is far better to give back and help those in need .

And then I saw my granddaughter, love of my life for the first time in a year plus . I wish I had not because that set me back . I was attempting to forget she existed because it broke my heart so much.

Love your children but as a Dr told me many years ago ..you owe them clothing , shelter and love. I believe I scored on all three points even if they don’t recall it a their minds may have been slightly twisted by a twisted person ūüė¶

I have ben here becoming more incapacitated by the moment , incapable of most things, like feeding my self. I cared for many but no one cares for me //Lesson learned

Lifestyle · Uncategorized

Sleep Deprivation…No Joke Folks

I know in this crazy dog eat dog society ( I am from New York..which translates into go go go ) that many get by with few hours of sleep . I did that for 40 years and managed it , I thought , fairly well…Back in the 1990’s Drs that I worked with prescribed me valium to catch sleep . As the mother of three, who often worked two jobs and seven days a week I was pretty toasted at times.

I went to a sleep Dr and had a sleep study back in 2011 , I believe. What I recall about that the most was the room that you were in , which pretty screamed “hospital green “..I was hooked up to all the sleep monitors and jarred at 4:30am with a you can leave now . I asked if I had done anything super embarrassing and was assured that I had not .

Meeting with the sleep Dr afterward I was advised that I was a sleepwalker with narcolepsy. Although , the sleep walking part runs in family I dismissed it as a no way . I was told that I never stopped spasming or moving throughout that period.

Flash Forward to October 2017 where I go back to a sleep Dr . because now I have started  to sleepwalk ( and I have witnessed others doing this and it is pretty freaky, I will admit) . I have done laundry and cooked meals with no recollection of doing such.

The sleep Dr I saw last Halloween was not of much assistance.. She essentially told me to get my sleep act together , which really was not of much help .

Since then i have seen a psychiatrist who has put me on massive doses of melatonin ..to little avail ( it worked for  a bit but not long enough. The sleep Dr had recommended three weeks of a minimum of 7 hours of sleep per night . At the time, I laughed however  I am no longer laughing .

I am not a large person, by any standards , however , what I have been advised to take should knock out a horse . Still no sleep .

I have talked to other Drs in addition to this one and they all agree that after 14 days of the sleep I have been experiencing for years you start to zone out , become incoherent etc . Do ¬†get credit for recognizing this and that it is happening ? ¬†I have often used the terms “stupid tired” or “fall ¬†on my face exhausted”. What rather amazes me is the lack of direction from professionals …Seek the best and do take sleepy lightly, lightly.

family · Lifestyle

Broken…Beyond Repair and redemption (?)

Do you realize what it feels like to be entirely broken…mind , body and soul . As much as my nature leans toward empathic, I ¬†have always stated that I knew what something felt like until I stepped , or walked , in someone else’s shoes .

I have been battling severe and complicated spinal cord damage for 12 years .It is difficult to go from being a real go getter …always on the move to the point of ” I have no function” Even those, who should be closest to you seem to not truly understand the extent of damage done . Extensive and major damage was a quote from my neurologist of almost 12 years back in May ..and there were more damages to come.

I guess being hopeful , or optimistic, or hoping that ¬†you have good karma ,,,because you are a good person, who cares about others doesn’t really factor in the grand scheme of things .

I was pretty dragged into a surprise event in NYC the other night . Two years after I requested , that this not transpire again. I have had three new injuries since April 29, 2018.

I keep attempting to go to the gym and Physical therapy but I have had to cancel both a number of times this past month .

Do you know what it is like to have every muscle fiber and every ¬†joint absolutely SCREAMING in pain to the point that you can no longer deal with it? ¬†I am extremely grateful to the security guard at MSG who took me under his wing the other night …

 

Why is it that the person ‘who “cares about you the most ” would you even place in such a situation..10 hours travel , sitting , standing when you are incapable of doing any of those for 10-15 minutes ? I don’t understand that and I will l never claim to . Yes, I did want to see that performer , but was 5 or 6 injuries ago. It seems these days I count every as injury related ..and no one seems to understand the age , the time, the extent of the injuries . The fact , that as much as I try to fight I can no longer recoup …slip sliding away ..

Lost the most important person in my life..the one who gave me hope and joy ¬†almost two years ago . This was due to similar pain and the realization that that individual was out of my grasp due to pain, which was excruciating . It ha snot been recommended for years that I travel as I did …what I did for love…and I will soon be a distant memory to her .

Sometimes you make some one your world and love them because they bring you the only joy that you have known in an otherwise traumatized life . I don’t wish bad Karma on anyone , but it is a ¬†bitch

Sometimes your actions and responses are based on pain, even beyond the pain threshold of someone who has experienced it greatly …or hurt hurt , When you come to the realization that the people who care the most, actually care the least

family · Lifestyle · respect yourself · sanity · Uncategorized

Feeding Your Heart and Soul

A steady diet of feeding your heart and soul is just as imperative as feeding your body. Perhaps more so . Anyone who knows me , knows that I have a voracious appetite and I often wonder why .

I don’t think my children realize the extent to which they fed my heart and soul. I could not have loved them. Perhaps I could have loved them better but I was a working mother of three ..sometimes holding down two jobs ..working seven days a week and still trying to fit in motivation , education and time together. It was not easy . My (former ) daughter asked me years ago how I did it and I honestly replied “I don’t know, I just did ” because I wanted the best for them and they are all successful in their own rights . I wanted them to have the lives and opportunities that passed me by and I made that my mission as a mother .

They are all off and on their own ..in July 2009 a baby girl was born with the ear of a fairy , and I was called upon to take care of her for lengths of time , which I never minded , because I adore children, but I adored her most of all because the love was reciprocated . For seven years that child fed my heart and soul and was EVERYTHING to me . She has siblings but I don’t really know them and they don’t know me.

As many may be aware , I have extremely severe medical conditions, the least of which is spinal cord injuries since 2008 , over and over . I spent 11 years in physical therapy ( I just returned after a break) I am a fighter . My Diagnosis in 2006 was eventual quadriplegia ..I also have two bleeding disorders, one of which I found out recently was a ¬†form of hemophilia. That might explain those multiple experiences of hemorrhagic episode and , yet< I was trying to be such a devoted mother that I recall making cupcakes for Valentine’s Day for my daughter’s class….one of my sons on my hips and clenching my legs together due to hemorrhage. There is not much I would not do for them (I draw the line at illegal ..why I left my long time high paying job) .

I have been seeing the same neurologist for almost 12 years ..every 2-3 months since 2006 to monitor my strength and progress , or lack there of . He is one of the top Neurologist’s at a top Hospital in the USA ¬†but his hands are tied . NO epidural injections ..no surgery ..no EMG’s with direct needle sticks into my neck or spine. ¬†I know that he has seen the light dim from my eyes over the years . As he stated to me in May of this year ” So many injuries (accidental , of course ) ..so much extensive damage” . I have fought a long battle with this ..there are days that I am at the gym and I feel like giving up, but I push myself ¬†although my inspiration is gone .

I fought to be there for my fairy princess , and comrade in fun but she is out of reach ¬†and LOL my children never really did speak to my DR ..and he tried to reach one of them …I was injured, more severely three years ago and I have never recovered . In fact , I have had further injuries ,. June 4th of this year ..seems to have affected C1-2 . To state that I am not frightened would be a lie because that is pretty much death

I attempted suicide a year and ¬†a half ago ..February 13, 2017 ..why (?) many may ask ¬†Because I was number 1 in my both my pre-med and US classes ..and had 30 years experience working in the medical field . Because I know how severe my spinal condition is ..as some one who has worked out for 40+ years , I know my body ….I know it was done and that was before two injuries ( not my doing) on April 29 and June 4, 2018 , which made me leery of getting in a car with any other driver..and I am limited . That incident on June 4th seems to have affected the use of my right arm..dominant arm and my left side is severely nerve damaged . However, again , I digress ..Once upon a time my ¬†(former ) ¬†daughter said ” I thought your Drs all hated you” To which I responded ” Where did you ever get that impression?” ¬†When I attempted suicide ( i really think the vodka messed me up as I was never a drinker …empty calories ) the Head of Cardiology at our local Hospital ( which is also not rated as shabby) stayed by my side the entire time that I was in the Emergency Room ¬†( he later told me you knew what the hell you were doing) ..My Dr’s actually hold a great respect for me and what I have been through and endured . Physical condition and strong mind have been credited to my survival , and that is years in the running .

I do not believe that my children will ever truly know what I have endured , and how hard I fought ..because I loved one little girl so much  I would die for her , as I would have died for them ..She was taken from me and no one realizes how severely disabled I am ( at least  not my family ) Drs have made attempts to reach out for years to little avail

if you really knew me , I may be one of the most loving selfless people you may ever know ..but I am uber tolerant and gullible and easily discarded ..it appears ..and all the while I begged ..Hurt me ..I know a lifetime of it ..but please do not hurt a child …ignored ..my granddaughter is better off believing that I am dead , rather than the fact that I may have abandoned, or no longer love her?

When you lose the capacity to enjoy any hobbies..when you are in pain 24/7 for years..when you sleep deprived due to that you do begin to give up . Music can feed my soul but that is off limits as well, unless I am driving ..the few that I can . Without heart and should food you will wither away

 

Uncategorized

The Day The Music Died

Contrary to the Don McClean hit Single “American Pie” , and coincidentally I learned in the past few years that one of my relatives was his Godmother , Fun family fact. The Music died for me on July 26, 1986.

I was raised in a very musical family . In fact , close relatives managed, and performed at the original Metropolitan House in Manhattan, NY. The Victrola was used frequently. As soon as I was able I bought myself a stereo, which I listened to constantly , through head phones . I own sever al hundred + albums, cassettes and Dvd’s but I am limited in my use of them .

LOL, if my children recall me blasting music and singing, with them, on Friday nights, when we were alone. Also the night we built volcanoes and diaroma;s on the kitchen floor and danced in circles …Doubtful

I grew up with music. I was our churches youth soloist. I was offered a part on Broadway ( no self confidence) so I did not go there .

Much in demand I regret not singing for Aunt and Uncle’s Wedding . The song was “Morning is Broken” by Cat Stevens. I regret my mother’s request that I sing Danny Boy for my father’s funeral in 1995 .

What much , or most of my family, did not realize was that after I was wed I was not permitted to play music in my own home ..because it was noise. Actually, today I was informed that I could play a CD while someone was out of the house tending to a cat . Sometimes, I drive, within my new limitations, 2-3 miles …just to listen to Cd’s in my car .

 

Red Flags Folks . I do believe that all of my children have an appreciation of music . I don’t think they realize from whence it came ¬†Hell I even came to love a rap CD that my son left in my 2003 Crv ¬†(best car ever) …before it became his ……..

 

Okay well, I am off and listening to a CD which I have not heard for 30 years ..just ordered it and permitted to play while I am alone …

family · sanity · self preservation · Uncategorized

To My (Former ) Daughter

It is my understanding that you miss your mother ..and that from a pathological liar …IDK who would not miss a “drop and run mom” ¬†who was there for you every step of the way ..who worked her ass off trying to give you every advantage of life …who encouraged you ( when you applied at Alliance ) Why would they not hire you ? You are the best person for the job.

 

I miss the daughter that I had before her marriage , which is eerily similar to mine ( in a somewhat gentler , kinder way ) ..My dear ..you lost your way as I lost mine long ago …history repeats ..

 

People want forgiveness for transgressions that they don’t understand . If they actually picked up a phone and returned a (very ) concerned Drs call, then they might . But moms, be wary . I miss the grandchild that I knew and I know that she misses me too and that is what breaks my heart .

 

SIL has mother issues ..knew that years ago ..but could not even say to me that he was sorry ( so whatever) when my mom passed away . It was my mother …you should have offered your condolences but you ignored that instead . My granddaughter, the one that I know clung to me and it broke my heart. If my daughter had ever responded to a Drs call she might actually realize the reality of the situation ¬†but she could not be bothered ..

 

Maybe you do , and maybe you don”t miss that drop and run mother who would laid down her life for you or any of your children .

 

IDK but ¬†I am in the thought process that if your in laws cared then they would have been there for you when they were ten minutes away . Disabled, I drove hours …too disabled to do anything now ..and you might be aware of that if you ever bothered to pick up the phone and return a call from more than a few Drs concerning your Mother’s Health

 

You are the one who wrote your mother off …now I am facing quadriplegia …I missed the years I may have been a functional part of your lives. Thank you for abandoning me in my time of greatest need..something I would never have done to you. So much for daughters being he one to take care of their aging disabled parents