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  • wulves
    I haven't posted a photo of myself on my profile because I cannot figure out how, so maybe someone can help me with that. TY I haven' t posted my story , I am not feeling up to it. Its long, painful ,and depresses me , I will one day but not tonight. I was dignosed 2 yrs ago, im a retired NYPD police officer, I retired in 2003 , the past year I developed other symptoms in addition to my MS . Horrid symptoms , that are now connected to Ground Zero. I was there for 27 days straight, not as a first responder I was posted there in October to late November,unlike first responders who started showing signs of illness some 5 yrs after , guys like myself are showing signs of illness some 12 yrs later. Make a long story short im in limbo as to what exactly is wrong with me. Along with the MS and PTSD my white cell count is off the charts, I have had 4 surgeries to remove tumors in the past year. Diffculty breathing , pain all the time. I have registered with NYC Ground Zero WTC Health Program but no one have any answers. They say its part of my MS my Nuro says no its Ground Zero related , and so if goes. I dont go to NYC for help from the Ground Zero Health Program , they cant help something they have no idea what is killing us all. A fellow brother officer spent countless hours away from his family to get help from the program , he missed birthdays , school events , and now a lung. The Settlement for damages to himself. $140.000 thats it for a lung , for all the missed birthdays , and family time. Its a slap in the face. No one knows what we inhaled down there the air was deemed safe , what was on those planes inaddition to the souls lost , the fuel ,etc. Stories are surfacing of toxics on board because our airport security was weak then not like now. Its just talk ,no one knows. My MS ,well I read here be positive , do this and that , how ? I try god knows I try , but I will start something positive , and an hour later just quit , why bother its a bandaide on a gaping wound. I'm dying , these tempory fixes and therapy and excercise , work for a few days and then like a punch to the gut , it all comes full circle my MS just takes over. And the loss of trying to stay positive. Tell me how and why to stay positive how to stay inspired. I cannot grasp the mindset anylonger so I sit and watch TV play video games , some days I feel like a million dollers and nothing is wrong , only to be shot down the next day with crippling pain and vision issues mis stepping all over dropping everything I handle ,the anger , and then the exhaustion sets in and sleep. Im sorry for the negativity , but it is so hard to stay positive and try again and again. God bless all of you , i am sorry for what has happen to all of you. I pray for you all.
  • maria1
    Hello wulves, How and why to stay positve and how to stay inspired? 

    ​I have a lot of favorite sayings, one old one is: THE BEST REVENGE IS TO LIVE WELL! I translate that into keeping my attitude to keeping myself feeling good, happy, silly, nutty, weird, unpredictable, funny, annoying and everything in between to keep myself amused, like a happy moron. All I want to do is laugh and giggle. But at 70 there arent too many other things i can get to do. I am an OLD 70, not the young spry chicken I use to be, and besides that I am a fat chicken, aka, Mrs Michelin. 

    ​Staying positive feels better than feeling miserable, yeah, I spent my time feeling miserable, i have been there. "I have been down so long it looks like up to me", as the song goes. Life is filled with ups and downs, we all have our share of downs and the only thing that makes the downs tolerable are remembering all the ups, all those little things we do in our lives instead of all the things we didnt do, like i remember learning how to ice scate, no teacher, just going to the ice rink in Prospect Park and watching everybody else, or watching people swim at Coney Island and copying them instead of standing in the water watching, (too bad I wasnt close enough to learn how to breathe in the water while swimming, giggle). All the little things I didnt miss, catching a tire fishing at Gerristen Beach. Learning how to whistle with two fingers in my mouth, silly aint it? but cool.  See, I got plenty of time to think, though I cant remember what i did before, I sure do remember older times.

    I play plenty of games online lately, I play to win, it helps me stay sharp( I am learning how to spell, finally) But some days I do things, like fold laundry, or dust.(so I can breathe)

    ​When we moved to Missouri 20 yrs ago I learned that because of the weather changes that are so rapid and dramatic here, we have to do stuff outside when we can, not when we want to. That applies to ms too, I do what i can when i can, not when i want to.

    ​We are all dying, so what, nobody gets out of it alive, it is what you do for you, while you are alive, that counts. If I am dead tomorrow I did all I was able to do, with the time i had. All we have is time. I remember buying a hot dog from the vendor on Wall Street, it was the middle of winter, his hands were red swollen and raw. He would stab a dog out of the water and dress it on a roll that plunge his bare hand into the ice chest for a cold soda, both his hands looked like baloons. Sometimes he would still be there at 5pm when i was leaving work. I vaguely remember him, but I vividly see his hands.

    ​You, and all the responders are in our hearts, 9/11 is something that touches us all in the USA and the other nations who lost people on that day. That the government(ours) is not able to show its appreciation is not who we are. We all take it personally and wish there was more we could do for all of you. So I guess that you will just have to be happy with the idea that you are loved by many of us in this nation, that you are not forgotten, you are in our thoughts with our best wishes. As well as our wishes that we knew how to make you feel better.

    ​We never stay positive, we just do our best to make it a habit, a little bit more every day. You/we are allowed to feel awful, we just try not to stay there tooooo long, it is no fun. But, I have had a bit more practice than you, giggle again.

    Staying in the minute helps, this minute right now right here, not drifting to the past or the future, just right now.

    ​I am not into prayer, but you do have my best wishes. maria



     
  • bubbadog66
    Yup, I feel your pains where reasons to be positive feel elusive, as the list of challenging moments just pile up. Being in limbo with no answers to my difficulties causes me to feel insane. The ground zero stuff is heartbreaking...i had a friend who suffered and died from "safe" air he breathed in while overseas in the military a couple decades ago...he trudged along for years without answers...absolutely torturous.
    It's called "practicing medicine" for a reason. My body is my church here on earth and when it experiences trama the hopelessness of no simple, easy solutions yields the negative heartbreaking feelings. The not knowing gets overwhelming....everyone passes the buck onto the next guy's plate. If that same next guy can send it onto someone else's deal it will. Over worked but NOT under paid!!?? I feel like a job task, not a real legitimate person. Like Maria said it is my responsibility to focus on the "good", not the "bad" 24/7. I found that A-Z Gratitude Lists are helpful in that there exists 26 reasons to carry on. Reality is there may never be answers so i must challenge myself to appreciate any and all "good" moments. If i can pull my head out of my own personal justified pity party i might experience comfort in my own skin as a result. Like medicine, it is all about practice, practice and practice again...until moments of relief from the same old same old occur, and they will if i am open to the value of these small moments of serenity.
    Best of luck in your journey to find the answers you NEED! Until then appreciate those small moments that can distract you momentarily from the uncertainty and unpredictability of the big picture. Simple but far from easy...practice, practice, practice....365 days from now the challenges will all be life altering "different"!!
  • MS_Navigators
    We are here for you. There is always someone here who can listen. Thank you for sharing with us.


    You can add or edit a profile photo in the "edit profile" area. So if you can get to the "My Profile" page, you should see an orange button that says "Edit Profile." 
    There is an MS Connection user guide that has really detailed instructions for setting up your profile, if you want to check it out:
    https://www.msconnection.org/MSConnection/media/MSConnection/Documents/UserGuide_v2.pdf