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  • thisiscrazy

    My MS story has been random.  My symptoms and opportunities were many but mostly put off because I thought they were in my head.  I was diagnosed after a car wreck because I had trigeminal neuralgia I thought was from the wreck. Fast forward 6 months I'm seeing an MS specialist who is pushing me to change DM meds because he wants to be more aggressive because I have brain stem lesions (no noticeable side effects).  When he scares me with this news I consider the change with the caviar that I have another MRI first.  Besides I feel good.  Dizz all the time but decent.  I've been on Copaxone surely it's working.  Well I have my requested MRI and low and behold not only is my occipital lesion have new active demylinization but I have a new lesion on my right optic nerve.  I have no new symptoms though.  The neurologist started on Decodron 4mg times 30 pills, yes 30, times three days.  Well I just finished day 1 and I can officially say that sucked big time.  Now all I can think is that I get to do that again and it will probably be worse.  
    Now come the questions...
    what do you do to get you through taking high dose steroids?
    how do you deal with these surprises?
    how do you not get mad when you feel like your body is failing you?
    ive spent since March getting healthy, working out as much as I'm able, giving myself shots, changing my workaholic habits, changing eating habits and loosing 30 (and still counting pounds.  

    this is more than about steroids.  I try to live in the moment but this has me fearful I will go blind in my right eye!  Well if the steroids don't rip me apart.  Lack of sleep probably won't help my symptoms either.  Ok rant complete!  Thanks for reading if you made it this far.  Any feedback would be great!

  • maria1
    gee, I wish I lost 30 lbs when I was on steroids instead of gaining twenty. 
    grin and bare it
    first i get mad then, i work on accepting it - but I ahve been at it longer than you.

    If you wanna  stop feeling sorry for yourself, think about walking into any nursing home or va hospital, or think about Helen Keller, or Stephen Hwaking, or what you are suppose to be doing with your life, or tell me to shut up, or all of the above. You will go through the grieving process a million times a day, dont stop it, mourn the loss, wallow in it, cry, yell scream rant and rave, pound a pillow, feel the pain, experience the loss, cry. I ahve often thought about why humans suffer loss, what is in in our make up that makes it hurt so much, I dont know why.

    I just know that we have to figure out what to put in to replace what we have lost THAT is the challenge. We hate giving up that which we love and now we have to put something mediocre in its place, ugh, and make it meaningful. I would much rather be skiing! But we dont get a choice, it is forced upon us and we have to choose to make it better or live in misery.  And sometimes misery is a warm place. Writing makes it better, emptying the head of all the noise makes it better.

    I dont wanna was my mantra for a long time, like the little kid I craved my 'normal' life, I dont wanna, I dont wanna, I dont wanna. I took my good fortune for granted and ASSumed I had that right to have the perfect life as I saw and wanted it, now Ii spend my days working on what to fill my life with, and my body says mostly words, words that keep my mind calm or laughing. I make fun of myself no matter how expensive my mistakes, i laugh at myself and the things my body does to me and my surroundings. I laugh at everything I break and count how long it takes me to break everything. i observe my new routines or lack thereof.

    But mostly I see and do my best to make things better for those around me. My partner recently told me that I made his life miserable for a very long time because of all the drugs i was on and the way they were affecting me, that is twenty five years of misery he went through, how is that for a legacy! now I am only interested in making up for him not laughing for twenty five years.

    We are not in this alone, we are sharing this journey with others and look at what it is also costing them, How is that for a rant?
  • thisiscrazy

    I would like some feedback from others on getting through the steroids.  I'm beginning to think roughing it through is just how it has to be like you said but if others have suggestions I would love to hear the feedback.

    I'm prefacing the rest of my response with the fact that I have read so many of you responses to others and seen so much positivity.  I actually like reading your responses and fantastic feedback.  I was very surprised at your response here, so here goes.

    The humor of you response is that my career is that I run a nursing home.  That is my job.  A job I love but is extremely high stress and difficult to do if you are not present.  Being sick puts that at risk.  I've seen the worst of the worst cases of MS and many other debilitating diseases. I was a social worker for many years before that, so I am very very aware.   

    I don't feel sorry for myself but I am mourning.  I'm positive around my family and minimize a lot.  However I'm scared.  I'm extremely lucky in a lot of ways but my fear is something I am working through.  I can walk but i have lesions in life threatening areas and this week I dealing with a new lesion on my optic nerve.   I thought this site was fortalking things out and support.  I appreciate your response but you are right it is judge mental and negative.  I'm sorry your early years with your diagnosis sucked and you took too many prescriptions and focused on negativity.  I'm happy for you that you have changed that focus.  Don't worry that's not my path.

    I said I've lost weight that was before starting the steroids and I've done that to push myself to be healthy in everything else so I can get as healthy as I can be.

    I'm sorry if my post rubbed you the wrong way or if you are just having a bad day.  Thank you for sharing your struggles and failures so I could learn from them.  No matter how negative my response may seem I appreciate that you responded with your honest feedback.  Thank you.

  • maria1
    Hello thisiscrazy, I accept your comments and appreciate you taking the time to respond to my post, communication is the important, even for me.

    You asked the questions: what do you do, so I answered the post as what I do, the whole thing is not about you, it is about me, it is my answers to how I cope with my life, and the process I go through to change my thinking when I begin to go into a funk. I dialogue with myself, the cows dont answer back so I never get the feedback. You see my words and negative and judgemental, I dont really think that way about it, it is the steps I take to climb up, I first must go down. I do my best to avoid , avoiding feeling bad, i allow myself to wallow as a luxury, like taking a bath.

    I am sorry we were in different places I should have waited and thought more before posting. Thank you for giving me the opportunity to clarify my hasty response, It is nice to have someone take the time to answer. maria
  • thisiscrazy

    It's ok.  I get it.  I think we were both in a bad place at the moment.  We can blame the roids for me! 😉. I am wallowing a little.  Mostly just because of fear.  I want to fight but every time I try to fight back and do more I keep getting knocked on my ass.  I tried to run a 5K and got a black hole in my vision and dizziness increased.  It was stupid.  It was too hot.  I had suspicions my MRI wasn't great but I pushed myself and ran anyways because I still can run.  I want to keep doing it for as long as I can.  I don't want to quit but my body tells me to quit. I hate that I need to slow down.  I've been an athlete my whole life. I know this is my new reality but I don't want to not be in control.  Ok there's my pity party.

    I'm sorry if I seemed pushy back.  You are right we all have our own ways of expressing and if we can take anything positive out of this I'm glad you were able to express your experiences to help you.  Vent away and I will be more accepting next time!🤣

  • maria1
    Cool, you get it. Once you get through (someone said when you are in hell keep going) the emotional upheaval of ms you can move on to controlling your mind, it is all in your mind, whatever is going on in the body is directed by the mind. Tell your mind to fix it. Calm like a Tibetan monk is the goal, when the mind is at peace it can work on repairing the broken wires. If you run your car at 110 the engine gets hot, the wires get hot, and the tires get hot, and they all burn out, same with the brain, a hot Latin emotion does not work for fixing what ails us. And once we get through the emotions we can return to a better place. Sometimes it takes a while to fix a problem but it does get better. There was a time I could not walk, then there was a time when I could not see, and the time I could not pee, now I am at a time when my hands and arms dont work. Drugs sometimes help, when we can not fix the short in the wiring, it does give us some relief but it is us talking to our mind, finding what is going on with us, and how to make peace with our psyche that solves the problem.

    I often wonder if the dmds are placebos for our minds to have a safe space to recouperate or if it does delay the disease? Still debating that one, the financial strain is so great, all the drugs, all the doctors, all the tests, how does one find a place of peace? Each sector of our lives we analyze, family, friends, careers, joys, we reevaluate all that we can to adapt to our new world, we eliminate toxic relations, we shed the unnecessary, we fight for what we want, then eventually we accept what is, and find a new peace is adapting to what we are able to do, not what we want to do, sure we still feel the pain and pangs of missing what we love, but then we realize that causes suffering so instead we celebrate the great memories we have, for me a cold crisp morning beign the first to get to the top of the mountain, I did it! I skiied with a personal joy like no other, and I can replay that tape and smile at the me I use to be because I brought myself those moments of joy, and they are bigger today than they were yesterday. And even those things I will never share, the dumb, ignorant errors of youth that some regret, the super stupid things we do when we dont know better, even those are part of who I am, and I can laugh at the foolishness of ignorance and youth, like stepping in the puddle!!!

    And that you thisiscrazy for giving me the opportunity to refine my thoughts, dialogue works.