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

Are Meds The Majority Of My Problems?


It’s almost 3am and I can’t sleep…again.  I was woken from a sound sleep with muscle and joint pain.  Last night was an injection night.  As I wait for the pain to subside, i am wondering…are my meds worth it? 

I take rebif three times a week.  I have low energy levels, brain fog, and confusion.  I think it’s due to lack of sleep.  Would my body be healthier if I went off Rebif?  It would certainly rest when it’s suppose to.  I wonder, am I doing more harm right now?

I am still working on my diet.  It’s so hard.  I must cut out everything I love.  I believe it’s working though.  The last few days have been good days…I’ve almost felt…do I say it?  Normal!

What are your thoughts when it comes to the therapies you’re on?  Let me know.

xo

Lora

August 27, 2008 Posted by | Everyday Life, Pharmaceutical Therapies | , , , , , , , , , , , | 3 Comments

I’m Back – embarking on a NEW journey


I have been really struggling lately – fighting so many symptoms but mostly fatigue.  It’s an effort to do almost anything.  I am totally convinced that diet has so much to do with it.  As I wrote in earlier posts, I was attempting to follow a gluten-free diet.  Easier said than done.  At first I was really good and did well with it.  I began to feel better but then slipped into bad habits.

On Friday, I found the book “Healing Multiple Sclerosis   Diet, Detox, & Nutritional Makeover for Total Recovery” by Ann Boroch.  So much of what she wrote in her book made sense.  After reading her book I took a close hard look at my diet and realized what a disaster it was.  Loaded with sugar and processed foods it’s amazing my body is functioning at all. 

Our grocery stores are jam packed and jelly tight with fatal foods.  It’s no wonder that not only are we obese but are children are following right in our footsteps!  As a nation we have adopted such an unhealthy lifestyle and we are passing it down the generations. 

All of the recommendations in Ann Boroch’s book were amazing.  I have comitted to eating the right way for my body.  I am staying away from sugars, processed flours, red meats and porks.  That means my diet will consist of mostly chicken, fish, vegetables, fruit – but not a lot of fruit as it is a form of sugar and whole grains. 

Today I tried a new grain…Quinoa.  I’ve heard about it but never tried it.  This grain is awesome and has a nutty flavor.  I love nuts so this will end up being a staple in my home now. 

I expect that the first two weeks will be difficult as I detox my body and get rid of the sugar and caffeine.  I love my coffee but I love living life more so the sacrifice will be worth it!

I will keep you updated as I go along on this journey to better health.

xo

Lora

August 24, 2008 Posted by | Uncategorized | , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | Leave a comment

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

Living With Relapses


lora-guru.jpg

 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


lora-guru.jpg

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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