Living with MS – Newly Diagnosed

Posted: January 3, 2010 in health, multiple sclerosis, Pain, Research
Tags: , , , ,

SMACK!!! That’s what it felt like for me when I was told I had MS. Fear, anger, depression, confusion, why, why, why, and a whole bunch more expletive feelings which I will not mention! 😛

I see so many around the net with their well meaning advice to MS newbies. The problem is they are putting their MS on everyone else. Meaning, what happened to them will surely happen to you. And, yes, similar things may happen, but never the exact same.

I watched a video one day and the woman said that MS IS a progressive disease and at some point all will progress! Sorry, BULLSHIT! There are people who have MS and never ‘relapse’ or progress. They can stay in remission and never have another attack. This is the type of information that can send a newbie into a very quick state of depression.

We are all different in our MS as we are in our lives. No two people will have the same exact journey with their MS. It may be similar at times, but never the same.

My advice to newbies, listen to no one, not even me! lol Do your research, talk to your doctor, look into the medications to see if they are right for you. Research, research, research.

What I will say straight out, eat right [no more sugar free, no processed foods, etc], light exercise, yoga for MS, contact your local MS Society, find an MS counselor. My counselor, Margo, has helped me through many a hard time in the past 11 years. Find out about the medications, study up on them.

For me, and only me, I no longer do any injections. There was no proof they helped progressive forms. For me, and only me, the side effects were not worth it. I do however take medications for pain [yes MS can cause pain] and depression/anxiety. I did injections for 7.5-8 years. Since being off of them for 4 years now, I do feel better. BUT, that is my journey and it may not be yours!

You may never end up in a wheel-chariot, you may never need walking devices. So, do not let others scare you. Get your information on your own and never let anyone tell you what you need to do for your MS journey.

I wish you…

Blessings and Hope…

My mini disclaimer: These blogs are from my perspective of my life with Chronic Progressive Multiple Sclerosis. I am not a doctor and will never tell anyone what they should do for their MS. We are all different in our MS journeys as we are in our lives.

Comments
  1. Carol Pack Urban says:

    I think your post would be good for anyone newly diagnosed with a chronic or life altering disease. Very good advice!

    Where would I be if I had believed the doctors and nurses who told me two years ago that I would shortly die from colon cancer? Don’t believe everything people tell you. Your case may be different from someone else’s.

    Thank you for a very good post!

    Like

    • Tracy says:

      I’m very very glad your doctors and nurses were wrong!!!!

      I talk to my doctor, but then do my own research. There have been many meds he wanted me to take that I did not.

      We are our best Doctor as we know our bodies!
      xoxo

      Like

  2. Ruby Cantu says:

    I agree with Carol it is good advice, same with scoliosis…others in my family have it, I just got the very worst of it.

    You offer great advice and I love your delivery!

    Like

  3. Vicki Day says:

    Mz T – I know exactly where your coming from – now on one hand I’m thankful for my condition as it allowed me to step of a very regimented merry go round and actually have a life and expand my horizons – but on the other I’m very angry because it was caused by miss –diagnosis and also because I’m feed up of people telling me how I should be or feel – when I was diagnosed I didn’t suddenly become an imbecile or an one brain cell moron who can’t make judgements or have feelings !
    What angers me the most is those well meaning idiots who start conversations with “ you know what you should do ?” ……… yes step away from you honey your lethal – around 18 months into my diagnoses there was a big thing about not having any chemo or medication and eating carrots and fasting and drinking your own urine – you go to this healing retreat in Mexico and you come back “cured” so for the grand price of $48,000 your cured of cancer – I can’t tell you how many folk thought I should pursue this reckless scheme which was unproven and all built on hearsay – plus the folk who asked if I was eating carrots – it got to the point I bought a small grater shaped like a carrot and carried it in my handbag and used to produce it and smile benignly to these ass holes so they would leave me alone.
    How can you have an argument with someone who thinks the cure for cancer is found in drinking your own piss!
    I’ve been a big fan of Barbara Ehrenreich and she has breast cancer and she has just written a great book I’m trying to get hold of but I read this article on Saturday and laughed out loud as someone who had the balls to say – enough of all this positive shit – let us just adjust and rage and kick ass if we want …….
    http://www.guardian.co.uk/lifeandstyle/2010/jan/02/cancer-positive-thinking-barbara-ehrenreich

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    • Tracy says:

      I had people telling me to go get bee stings!! Really??!! How ’bout NO!

      Drinking of pee…um can we say nooooooo thank you very much!!

      I’m so glad you did what you did so we still have you here with us!! It’s one thing to mean well and another to cause harm! The ‘snake oil’ sellers cause harm. Assholes!

      I love that; enough of all this positive shit – let us just adjust and rage and kick ass if we want!!
      That is a must read for me!!

      Love ya Vicki girl!

      Like

  4. Vicki Day says:

    Tracy – I think with any illness you get the “snake oil charmers” and yes drinking your own piss or getting stung by bees might in a million to one chance cure someone but not everyone …….. So don’t enforce your view – the best selling Sunday newspaper ran an article in their magazine about this place in Mexico and me and my mother received between us 11 copies of people – they all pointed out that I had the money to pay for this miracle cure so what was stopping me – was I being mean or reckless ……… yes I was being reckless by associating with them…….
    When I sadly lost 7 cousins to breast cancer I had people ask me if I was going to have my breasts removed – why? I don’t have that genetic disposition my daughter and sister does ………. So that’s a bridge WE have to cross unaided by unproven tests – yes life is a big bitch but I think my frame of mind is to be very positively angry – not crushingly giddy and deluded.

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