Everyday Life With MS

Experience Tips Real Life Solutions

Swank Diet? MS Recovery Diet? Best Bets Diet? Paleo Diet?


Hi Friends!

 Sorry I haven’t written in a couple of days but I am still recovering from a relapse.  Last night was interesting.  I couldn’t move my knees!  I ended up being a bed bug for the day!  Today is better…so far!  I tend to get worse as the day goes on.  My body fatigues more.  Pace myself…I have to learn what that means!

Have you used any of the MS diets out there?  When I was first diagnosed I changed many bad habits; I kicked my Diet Coke addiction, stopped eating processed foods and never ate anything that came in a package.  I only ate fresh fruits and vegetables and lean meats.

I felt great.  I even trained and competed in a Triathlon for the first time ever.  After my training days were over, I got lazy.  I started with the processed foods again and have never been the same since. 

This weekend I did a lot of diet research on MS diets and found a common thread.  All recommended the following:

  • No gluten
  • No processed foods
  • Low saturated fat diet
  • No dairy

Hmmm….was it a coincidence that I went into remission when I changed my eating habits?  I don’t know but I am going to test it.  Starting today, none of the bad stuff – just fresh, whole foods and no gluten!

Let me know your results if you have ever practiced one of these diets.  Did your symptoms subside?  Were they minimized?

Anxious to hear!

Lora

March 30, 2008 Posted by | Diet | , , , , , , , , | 2 Comments

Everyday Life – Everyone Wants to Help


Hello! 

I have been diagnosed with MS since 2005.  I had almost 2 years of life symptom free!  I felt good and accomplished a lot. 

Almost everyone who knew me, knew that I had MS.  I didn’t keep it a secret.  I wanted people to know and to see how well I could manage life.  Even though you couldn’t tell I had MS by looking at me people still treated me like I had a disability.  I could never say or do enough to let them know that I was OK and life was good.  I wanted the times that I was symptom free to be times when I didn’t have to think any more about the disease other than taking my nightly injection.

Now that I have been relapsing people hover around me.  Wanting to do for me.  No matter how strongly I tell them that I can do it on my own or I will call/ask for help when I need it.  If you know someone who has MS and they tell you they will let you know when they need your help, please respect that.  MS can be debilitating enough on it’s own, it doesn’t need help from others enabling it to be even more debilitating. 

I think one of the things I struggle with most when I am relapsing is the loss of freedom.  There are times when I cannot get out of bed, drive, walk, run, see, think or even care about participating in life.  Since MS can interfere with my life on those levels, I don’t want anyone else helping MS in making my life more debilatating than it can be. 

I once heard a motivational speaker talk about her life with MS.  She was a truly amazing woman.  One of the things she said that has always stuck with me is that one prerequisite of being diagnosed with MS is that you have to have a good dose of stubbornness to go along with it.  I am so stubborn when it comes to what I can’t do.  I will always push the envelope.  I will not allow it to rule my life but I will recognize when I need to slow down.

I started to give up my positive attitude and element of hope not too long ago.  That was totally out of character for me.  My close friends were there supporting me all the way, encouraging me to go after life with the same zest, only differently.  Shift paradigms.  Take what you have today and do the best you can with it even if it means staying in bed all day.  Just don’t give up.  You are here, on this earth, to make a difference and it can be done, no matter what your struggles are.

Keep strong

&

Stay hopeful

March 25, 2008 Posted by | Everyday Life | , , , , , , | Leave a comment

Today is a NEW Day!


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From now on lets approach every day as a new day.  One that is filled with:

  • Hope
  • Happiness
  • Fulfillment
  • Fun
  • Enjoying what we have at the time
  • Not concentrating on our issues

Those are some of the hardest things to accomplish when you are dealing with some pretty heavy symptoms or issues relating to your MS.  Sometimes it’s just easy to have a pity party, but that’s exhausting too.  Live and do what you can today.  Make the most of the day and your family. 

Many times MS upsets our plans for the future…or so we think.  You may have been clicking along on a mission or plan to accomplish something when MS stepped in and changed everything.  That happend to me.  I was on one path and MS led me to another.  My life is completely different from what it used to be.  I can’t say that it’s better or worse, just different.  I am still getting used to the changes. 

Changes are good because they offer so many areas of opportunity.  You just need to be creative.  Think outside the box and then put it into action.

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Think in terms of:

  • What did I always want to do/learn but never had the time because of my busy life before MS?  If you had to slow down your life because of MS it’s hard to discover what it is you should be doing to be productive.
  • How can I make a difference in my life or someone elses?  Could you be a resource for someone?  An advocate?
  • What hobbies or interests do you have?  Expand on them.

Tell me what it is your struggling with and let’s come up with a plan for you. 

Remember, change is GOOD!

March 22, 2008 Posted by | Raising a Family | , , , , , , , , , | Leave a comment

Relapsing


Tingling, tremors and brain fog!  Oh my!

That’s been life these past 3 days including the usual loss of balance, blind spots and falling asleep standing up!  Yikes!

I started a three day course of solu-medrol and finished it today.  It’s my third treatment in six months.  I haven’t really seen a huge improvement with this treatment – ever.  I still have the symptoms that originated 6 months ago plus some more.  Has anyone else had this experience with solu-medrol?

For me, solu-medrol is a sedative.  I fall asleep during my treatments and I am really lethargic the rest of the day.  I also get the metallic taste and for me it lasts and lasts as well as nausea. 

If this treatment doesn’t solve anything in the next month or so, my Neurologist is going to put me on a clinical trial.  I will let you know what it is when I find out and tell you if it’s something worth checking out.

In the mean time, let me know which treatments have worked for you.

Stay positive,

Lora

March 21, 2008 Posted by | Pharmaceutical Therapies, Relapses, Symptoms | , , , , , , , , | Leave a comment

Living With Relapses


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 In 2005 I was diagnosed with RRMS.   I didn’t relapse for almost 2 years and now I can’t stop.  Yesterday I started my third treatment of Solu-Medrol hoping to slow down the progression of the disease. 

Relapsing is hard, it’s caused me to change my life completely.  I have gone from highly active to very sedentary.  I hardly leave the house and I had to quit my job.  I love to work, network, etc. but MS has taken that away from me…to an extent.  I refuse to let it completely take over my life.  I decided that I would work from home which would give me the freedom to rest when I need to.  I searched on the internet for valid stay at home jobs.  Those jobs are far and few to come by.  So, I created my own company and have lots of work that keeps me right here on my couch or in bed when I need to be there!

I have a company called Virtual Assistant On Demand.  Basically people outsource projects to me such as

  • blogging :o)
  • power point presentations
  • online advertising
  • PR
  • Brand development
  • Website SEO

Anything that involves a computer.  Check out www.virtualassistantondemand.worpress.com for more info.

If you need help transitioning from commuting to telecommuting, let me know…I will help you.  It’s a lot easier to be home, the struggles are still there but you can manage them to an extent, taking some pressure off.  Let me help you.

Be strong, have faith, look for that silver lining…it’s there.

xo

Lora

March 20, 2008 Posted by | Fatigue, Relapses, Working | , , , , , , , , , , , , , , , | Leave a comment

Welcome To Everyday Life With MS


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Hi!  My name is Lora, I am 39, a single Mom of a 7 year old, starting a new business and have RRMS. 

I was diagnosed with RRMS in August 2005.  I was in remission for almost 2 years using Copaxone.  In July 2007 I relapsed and as of March 2008, I haven’t gone into remission.  It’s not easy…at all.

I am always on the computer looking for information and others who have experienced what I have.  Most of all, I am looking for tips on what helps. 

On this BLOG I would like to exchange ideas with regards to MS and:

  • Diet
  • Raising a Family
  • Various Therapies
  • Excercise
  • Fatigue
  • Having a Career
  • Insurance
  • Disability
  • Relapses
  • Symptoms & how to deal with them

And, so much more.  If you have ideas of what you would like to see discussed or you have ideas, please let me know.  I find that know how others deal with their diagnosis and the tips they have found that really help.

March 15, 2008 Posted by | Uncategorized | , , , , , , , | Leave a comment

   

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