Tag Archives: Monsters INC.

Fear and MS

Monsters, INC

Let’s talk about scary! When I was first diagnosed with MS, I made a conscious decision to stay far away from all things MS. It all scared the begeebee’s out of me; I wouldn’t even read the National MS Society magazine because of those scary aids and pictures in the back for mobility assistance devices. To think that one day I might need one of those was too much for me. I’m ashamed of the fact that I was even afraid of people with MS, although I didn’t know any. I couldn’t face seeing what I knew might happen to me.

For the first six years or so, I didn’t get the magazine. One day I was in my husband’s home office and I went in a drawer and found not porn magazines… but 6 years worth of National MS Society magazines! He had been getting the mail every day, as a part of his routine, so I just never noticed. In that time he researched everything he could about MS, my symptoms, and my drugs.

The most important part for me is that he never let me know…ever. Not one statistic or sad story…nothing. I think he saw something in spite of my upbeat, optimistic, cheerleader self, that was dark, and it came with my diagnosis. It was fear. Over the next few years, I took it in, in very small pieces. I eventually found a very good doctor whom I could talk to, and I trusted. It was always about just me and what was going on right in that moment. Never about what could happen.

But now, I want to know EVERYTHING, so bring it on! I have a better understanding why MS is called the “snowflake” disease. Like snowflakes, no one person with MS, is exactly like another. I also realized that not everything I read was going to happen to me.

My practical advice to you is:

1)      Be your own advocate. Learn all that you can about this disease; be sure, though, to keep it just to what is happening with you in this moment. You can eat an elephant, only one bite at a time.

2)      Find good doctors; shop around. Communicate well with them and insist that they do the same with you. You will create a “team” and you are the Quarterback.

3)      Stay away from the internet, except my blog of course (LOL). As I come across blogs to suggest, I will post them. There IS good information out here, but limit your surfing. Carefully choose a few blogs to follow that have the tempo that suites you and ONLY do research using legitimate science and health sites.

4)      You will need help; you will need support. Get it – a spouse, a friend, a mother, a sibling, even a child. You may need to say “I need you. Please stay informed about this disease for me. Or with me”. Explain that it is overwhelming and frightening. Explain the “snowflake theory” as well. For goodness sake, whatever you do, don’t get someone as freaked out as you.

5)      A Clinical Psychologist has also always been a part of my team. Again, shop around.

6)      Last but not least…ask me! I will do my best to help you with whatever information and support that I can.

7)      Oh…and breathe!

COMMENTS and THOUGHTS:What was your experience when first diagnosed? Will you share your strategies to overcome the fear?

Advertisements

3 Comments

Filed under Uncategorized

Monsters, INC.

There are monsters in my closet, waiting to emerge.

monsters_wp_04_1024

“You’ve got active lesions in your brain”. That’s what my neurologist said to me as we looked at my brain MRI. My response: “So what…that means nothing, you’ve probably got’em in your brain too. Have you ever looked?”

I learned a long time ago that MS symptoms and lesions didn’t necessarily go hand in hand. You could have symptoms with no lesions, or lesions with no symptoms. You could have many lesions with very mild symptoms, or a few lesions with lots of symptoms.  So…I think the “monster in my closet” approach is one way that doctors try to scare new patients into taking these disease modifying drugs(DMD).

Don’t get me wrong; I love the drugs! I’ve been on them since they were first approved by the FDA. I believe they are ONE of the reasons that in the twenty years that I’ve had RRMS, I have not progressed to SPMS. Statistically 50% of all patients 10 years into the disease, do progress from RRMS to SPMS. I wonder if that statistic was calculated before the development of the first disease modifying drug in 1994. If so, I would expect that statistic to be even better for patients diagnosed after 1994 who have had the benefit of these drugs.

The good news is active lesions along with symptoms, means that I’ve NOT progressed into SPMS. If I were symptomatic, with NO active lesions this far into the disease, that would be indication that I had moved from RRMS into SPMS. So, YAY for my active lesions! This also says to me, this relapse will end (remit).

The moral of this story is…make no decision out of fear. I will choose a new DMD very soon; not because there are monsters in my closet waiting to emerge, but, because I believe these drugs have had a positive effect on the course of my disease.

IT’S NOTHING PERSONAL; IT’S JUST THEIR JOB.

Thoughts and Comments:

Have you decided to use any of the DMD’s?

If so,do you feel that they have helped at all?

ps. I’d love for you to join me on Facebook: https://www.facebook.com/pages/MS-Open-Mic/579107032117769?fref=ts

and Twitter: https://twitter.com/EstizerSmith

10 Comments

Filed under MS Drugs, Neurology