Everyday Life With MS

Experience Tips Real Life Solutions

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

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

Trouble Breathing


Hello –

Still recovering from the drug mishap courtesy of Caremark.  New developments include trouble breathing.   Has this happened to anyone else before?  Let me know.  I’m not sure if it’s a drug issue or an MS symptom.  Thoughts and comments welcome!

July 10, 2008 Posted by | Pharmaceutical Therapies, Symptoms | , , , , , , , , , , , , , , , , , | 1 Comment

Life Is Hard Enough Without Help From Your Pharmacy


Ok, I’ve been having a hard time for about the last year.  I’ve tried everything from diets to holistic healing.  I started feeling better about two months ago until my mail order pharmacy was acquired.

I’ve been on Rebif Since October 2007.  Pharmacare my mail order pharmacy took great care of me ensuring I had my meds when I needed them until they were acquired by Caremark (CVS).  That’s when things took a turn for the worse!

Caremark called and insisted that I have my Neurologist fax over my prescription so they could fill it.  I was running very low on my prescription.  As a matter of fact, I only had two injections left and I was messing around with prescription faxes and requests – a lot of red tape when all I really needed was to take care of my health.  Caremark was more interested in their paperwork!

My Doctor’s office complied with their request and faxed the only prescription written for me regarding Rebif.  The prescription was dated October 2007 and instructed a titration pack for two weeks followed by a maintenance dosage.  The date this transpired was May 2008.

Caremark sent a titration pack to me.  I was desparate for my meds so I began taking it.  I never checked the box/dosage since I had been on maintenance since October 2007 – 7 months ago – I was operating on Auto Pilot.  Plus…Pharmacare had always taken such good care of me.

I started feeling really sick.  My symptoms got worse, I had major hot flashes, couldn’t sleep, had severe aches and pains in my muscles, bones and joints and fatigue like you wouldn’t believe (above and beyond the normal MS fatigue which is hard enough to deal with on it’s own).  Anyway, you get the picture.

By chance, a nurse from Sereno called to conduct her routine check-in.  She is great!  She always gives me some great tips to help ease any side effects I may be feeling.  While we were talking, she had me check my box of Rebif which is when we discovered I was taking titration doses. 

Yikes!  When we discovered the error, she put herself into action and got me a new box of Rebif immediately. 

When speaking with the folks at Caremark, I got a half hearted apology and the excuse of “The person who made the mistake is only human”.  Well, excuse me but I am only human too and her “mistake” has cost me 6 weeks of my life, extreme pain, fatigue and loss of time with my 7 year old daughter – something that can never be replaced.  And guess what?  I am still not over her mistake.  I haven’t completely adjusted to the correct dosage of Rebif.

Any of you who know what it’s like to adjust to the maintenance dose of Rebif knows what I am going through.  Lucky me, I got to do it twice!

Anyway, I really wanted to know what Caremark was going to do to make sure this didn’t happen to anyone else.  To date, I haven’t gotten an answer.  I also wanted the executives as Caremark to know what has happened but I have only been able to speak to “supervisors”.

I did report the mishap to the FDA but still, I want to know what Caremark will do in the future.  This is a serious problem and should be dealt with swiftly…hah!  Accountability today is a joke!

Has anyone had this experience with Caremark or any other pharmacy?

July 8, 2008 Posted by | Pharmaceutical Therapies | , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | 3 Comments

Swank, Paleo, Bible Diet?


Hello!

I’ve been doing my own version of the SwaPalible diet.  Yes, a combination of the three.  Really, what they all boil down to is eating nothing processed.  Eat whole foods and eat natural.  If you can’t pick it or grow it – don’t eat it.

I repeat to myself on a daily basis – garbage in – garbage out.  If I feed myself garbage, I can expect my body to become garbage. 

Prior to my relapse in July, I followed this diet pretty closely – eating nothing but whole foods.  I felt wonderful.  Then, I got lazy.  I paid for it.  Now, I am working at eating only what’s good for me.  If it improves the quality of my life, I need to embrace it.

xo

Lora

April 23, 2008 Posted by | Uncategorized | , , , , , , , , , , | 2 Comments

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

   

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