Everyday Life With MS

Experience Tips Real Life Solutions

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

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

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

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

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

   

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