Tag Archives: Relapsing Remitting MS

MS and Anger: “Falling the Fuck Apart”!

So you wanna know about “anger issues” when dealing with Relapsing Remitting Multiple Sclerosis? This question caused me to go back into my blog post’s and find this post. I knew I MUST have written about it SOMEwhere. I did…and it’s a joke. “To Not Unravel”, clearly, it was early on in my blogging and I hadn’t come to terms yet with how “politically correct” to be. Well, I’m over THAT! How bout ” Falling the Fuck Apart”.

First Christmas as a new Mom, Ho, Ho, Ho.

First Christmas as a new Mom, Ho, Ho, Ho.

When first diagnosed I was cool, but about four years into it, I became a beast. As my husband would say, “A PitViper”. I was unbearable…even to myself. I had no idea it was my MS. I thought I was just exhausted (I now know, THAT WAS MY MS) I had two small children though, and I thought it was just life, not MS. That was until one day I noticed my brain was boiling. I sat down on a footstool in the kitchen and called my sister-in-law, the nurse. (What the hell was I thinking; I should’ve had my Neurologist on speed-dial) She told me to eat some bread and take some ibuprofen. I did that and went into a quiet room to meditate. The boiling feeling stopped.

Now that I’m twenty years into it, I realize “Hindsight truly is 20/20”! That wasn’t the first time I had noticed the “boiling” sensation and I NEVER mentioned it to my Neurologist but, I did recognize that this problem was:

  1. Physiological
  2. In my brain (where I now understand much more about the presence of lesions)
  3. Something that I could stop, with the right tools, knowledge, and sometimes drugs.

The doctor that I DID go to about this was my Psychologist. Yes, it was MS related. Although I didn’t know that at the time, what I did know was that I had to have someone to talk to about it. That someone had to have enough skill (and sense) to know that, I wasn’t crazy. She listened (once a week) and then threw me headfirst into “Mindfulness Meditation”. That is what saved me.

Is this the face of a beast?

Is this the face of a PitViper?

I started with the book “Full Catastrophe Living” by John Kabat Zinn.

JUST DO IT, and remember these things:

  1. Regardless of what anyone else thinks, you are not a bitch (or bastard)
  2. You are still be a good mom, dad, daughter , sister, or brother.
  3. The MOST important thing in MS is that you’ve GOT to take care of yourself…”By Any Means Necessary”.

 COMMENTS:

Have you experienced anger issues with MS or any other Illness?

Have you come to manage it, and if so…how?

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Filed under Mental Well-Being, Stress Management, Uncategorized

Video #2- “What MS is NOT!”

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I’ve created this video to talk just a little about some of the things you do NOT have to worry about with an MS diagnosis.

Comments and Questions. I’m a pro at this Vlog business now…any questions?

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Filed under Diagnosing MS, MS and Family, MS and Genetics, MS and Pregnancy, MS Symptoms, Uncategorized

Video #1- “What Multiple Sclerosis Is”

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I’ve created this video to talk about what MS is, and the different courses that the disease can take.

CORRECTION IN VIDEO!

When explaining Secondary Progressive MS , I say, “There are fewer relapses”. Correction- “There are fewer periods of remittance”.

Please leave comments and questions. I am a Vlog Virgin :)) Well, not anymore!

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Filed under Diagnosing MS, MS and Disease Modifying Drugs, MS and Genetics, MS and Pregnancy

Tecfidera Doubts, I don’t THINK SO!

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Tecfidera has only been approved for about month. I started taking it 5 days ago, and, wouldn’t you know, eyebrows are already raised. There have been some reports floating around about a possible connection between Tecfidera and the development of progressive multifocal leukoencephalopathy (PML), a viral infection of the brain that usually leads to death or severe disability.

This is what I have found so far, only 4 psoriasis patients in Europe who have been treated with drugs that contain Fumaderm over the last 19 years have developed PML. 347 MS patients using the drug Tysabri, which also contains Fumaderm, have developed PML. That’s since Tysabri was approved in 2007, only 6 years ago to treat Relapsing Remitting MS (RRMS). So, it seems to me that PML does not become a threat to my health unless it is used in Tysabri, to treat my MS.

My reality is:

I’ve had RRMS for almost 20 years.

I began taking other disease modifying drugs (DMD) about 17 years ago.

Until now, I’ve not been overly concerned with progressing to Secondary Progressive MS (SPMS). What makes now different? I stopped all DMD roughly 2 years ago. A little more than 1 year ago, I entered the most severe relapse that I’ve had to date, and it has lasted more than a year. Could it be that the DMD’s had delayed my progression to SPMS. By stopping all DMD drugs, could I have allowed SPMS an opportunity to take hold?

I did not take the earliest approved oral DMD because my Neurologist encouraged me to be patient and wait for Tecfidera, based on the limited information there was about ALL of these drugs. He deemed Tecfidera to be the best for me. He also wanted me to continue the DMD that I was using, until Tecfidera was approved.  I did not.

So here I am, 5 days into Tecfidera, with this new information. I am not the least bit deterred.  In a perfect world I would give any new medicine more time on the market before I used it, but my world is not perfect. I am now 50 years old and at a crossroad. If I were to wait 10 years before going back on a DMD (so the drug could be on the market longer), I would be that much closer to SPMS. I’m not willing to wait any longer. All of the data indicates that taking Tecfidera is not a life threatening-risk.

As MSers, these are the most difficult decisions to make.  No one should be judged for the choice they make, unless you are willing to take the disease, life WITH IT, and all of the uncertainty of its future.

I wish us all well,

Estizer

 

 

 

 

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Filed under MS and Disease Modifying Drugs, MS and Oral Medication, MS Drugs

Searching for the Phoenix

My name is Estizer Smith. I am a photographer and a teacher.  A mother and a wife who happens to  also have Relapsing Remitting MS. I enjoy performing and writing a great deal. A current relapse has taken me away from many of these things temporarily and it’s been suggested that I blog while I wait. Oh…I’m waiting to find the Phoenix (read my “About” page). MS is a …challenging disease. I plan to focus on all the things you can do with MS because in the 20 years that I’ve had it, I’ve done a lot of them. I especially like the open mic forum because it gives me the freedom to sing a song (I won’t) write a poem, tell a story or whatever moves me. My goal with each post is to be Funny( I’m gonna struggle here), Honest, Informative, and Uplifting.                    I’ll do my best! 

Searching for the Phoenix

I’d love for you to follow me on Facebook: MS-Open Mic and

Twitter: Estizer Smith

Site content is not intended to be a substitute for professional medical treatment. Never disregard professional advice or delay seeking it because of something you have read on the MS-Open Mic site.

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