Everyday Life With MS

Experience Tips Real Life Solutions

Marbles For MS


The following website is a must visit/must read for anyone who has MS or anyone who knows someone with MS.

http://www.marblesforms.org

Thank you Connor for your creativity and dedication to helping those with MS

xo

Lora

August 5, 2011 Posted by | Everyday Life, multiple sclerosis | , , , , , | Leave a comment

I Am Desparate for Feed Back


Hello All!
I am going crazy trying to figure out what is going on with me.

I recently changed neurologists because I wasn’t getting anywhere with my old neuro. The new Dr. ran lots of blood tests and ordered new MRIs.

Yesterday I had a consult with him and he told me my MRI hasn’t changed since my last one 3 years ago. He told me my symptoms do not correlate with my MRI and as a matter of fact, my MRI isn’t characteristic with MS.

He also tested me for other things like lupus, lyme disease, etc. but everything came back normal.

He told me that my symptoms are psycho-somatic, basically not real and that I have a deeper issue than the symptoms.

I am stunned. Has anyone else gone through this before? Is it possible for me to have symptoms but all tests come back negative?

As I write this, I am fatigued, some of my fingers don’t work like they should and I have tingling all down my right side.

Advice on where to turn now would be soooooo helpful.

Thanks
xo
Lora

June 30, 2010 Posted by | Everyday Life, Fatigue, multiple sclerosis, Relapses, Symptoms | , , , , , , , , , , , , , , | 4 Comments

Have You Ever Wondered How To Talk To Someone with MS?


I came across a blog entitled “AnonyMS“.

The first article I saw was entitled “How to Talk to Someone with MS”.  For lack of a better response…OMG, finally!  Thank you for writing this article and putting this issue into perspective.

Please read the article here.  If MS or any other circumstance for that matter,  is a part of your life, this article will give great insight, reminding all of us that the disease does not define who we are.  Being a wife, mother, sister, friend, co-worker, artist, author, performer, contributor to society  and the many other roles we play defines who we are as a person.

AnonyMS makes a great point when she says “Sure, it’s helpful to have an MS mentor–and chances are, your MS’er has already reached out to someone…”  Many friends and family members may be offended if they are not the person the MSer reached out to.

Having MS is very personal.  You are no longer in control of what your body does.  Some of the things your body does just doesn’t make for good dinner conversation and is uncomfortable to talk about.

Think of it this way…You would never expect a sexual assault survivor to discuss every last detail of their ordeal with you and how they are dealing with it and the treatment options they have selected or not selected to help them cope.  You should never expect the same of someone who has been diagnosed with MS.

Yes, you are a close friend or family member to this person but you are not living the battle they are fighting.  For someone with MS, it is easier to reach out to a total stranger, a blog, or a support group.  Even though no one experiences the same symptoms, they all experience and know The MonSter intimately.

Let your friend/family member bond with their new family found in MS.  If they want to reach out to you, they will, but on their own terms and their own timetable, just like a survivor of sexual assault would.

Your job, be their friend and family member they new before MS, not their counselor.  Talk to them just as you did before The MonSter started to reside within them.

May 5, 2010 Posted by | Everyday Life, multiple sclerosis | , , , , , , , , , , , , , , , , | 1 Comment

Forks Over Knives…


Are you ready to reverse and/or prevent disease? Check this out http://ping.fm/BqqIT

May 4, 2010 Posted by | Diet, Everyday Life, multiple sclerosis | , , , , , , , , | Leave a comment

Tell Your Story Here


I want to know what your MS story is.

  • Are you someone with MS?
  • Tell me your diagnosis story
  • How do you cope?
  • What is your advice to others with MS?
  • Are you a caregiver? – What’s it like being a caregiver and how do you cope?
  • Is your parent someone who has MS?  How does that make you feel?
  • How do you cope with your parent having MS?
  • Are you a volunteer?  How do you help those with MS?

Tell me what it is you experience with MS, how you cope and what you can offer for advice.

I can’t wait to read what you have to say.

May 1, 2010 Posted by | Everyday Life, multiple sclerosis | , , , , , , , , , , , , , | 3 Comments

World Multiple Sclerosis Day


World Multiple Sclerosis Day is May 26, 2010.  Learn More Here:  worldmsday.blogspot.com

April 29, 2010 Posted by | Everyday Life, multiple sclerosis | , , , , , , , | 1 Comment

To Understand it You Have To Live It


Take a moment to live inside my body. It goes beyond the every day trials people may face such as being tired after a long day at work, getting the flu, not understanding a math problem or even spraining an ankle. Those trials have a beginning, a middle and an end. My MonSter is here to stay, living inside of me, decaying my body until the day I leave this earth.

Once there to experience your moment within my MonSter, you will experience:

A fatigue like no other

The constant poking of pins and needles growing to a crescendo of stabbing daggers and swords

Complete weakness – the inability to move, to help yourself to the bathroom or a glass of water when you so desperately need it

Confusion. Something you used to do with ease and perfection is now a struggle and riddled with error

Total isolation

When I am lucky enough to have a good day, I can be fun, happy, active, alert, and make total sense. Demands grow, people forget about the MonSter lurking, and waiting to time it’s next attack. The MonSter attack plan is a shrewd one. Taking liberty to attack at the most inopportune times – completely corrupting the peace that had settled in its place since the last attack.

The MonSter is never fair, understanding or selfless.

The MonSter is always selfish, spoiled, demanding, and hurtful.

If you know someone with MS, try to understand the battle and warfare taking place within their body. Understand their good days will not last forever and for that reason, make their good days all the more sweeter because the bad are just around the corner.

If you have MS and are not being heard, or don’t quite know how to explain what is going on, let me be your words. Share this with those who need to live in the battlefield of MS, just for a moment.

xo L

April 29, 2010 Posted by | Everyday Life, Fatigue, multiple sclerosis | , , , , , , , , , | 2 Comments

   

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