Monthly Archives: March 2014

Van Gogh sucked too!

Anyone great at anything probably “sucked” at first. Take Vincent Van Gogh, he only sold one painting before he died.van-gogh-starry-nights-1There’s Michael Jordan, Bill Gates, Oprah Winfrey,  Jay Z and…me:) Have faith in yourself if no one else does.

When I took my first Biology class in college, I got an “F”. It never occurred to me to change my major. I don’t even remember thinking there was anything wrong:/ Not with me anyway. As an elementary school substitute teacher, I told a class that they had, “really pissed me off”. How was I supposed to know that wasn’t okay to say? They HAD! The principal let me in on a secret, “you can’t DO THAT!”. That’s when parents call. I found other ways to say LOTS of things. Now, I kinda suck at learning the complete map of Easton so I can deliver these kids safely home on the school bus. I’m working on it. I’m gonna try looking at it as another human body system, like the muscular system or the respiratory system. I’ll think of it in terms of something that I’m more comfortable with…not a MAP. I’ll be sure though not to tell the rowdy little buggers on board, to sit down and be quiet…you’ve pissed me off. I’ll say, ” I’m concerned about your safety, you should sit down, cuz if we crash…you’re gonna DIE!” Better?

Comments: What have you gotten better at over time, and you were terrible in the beginning?

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Filed under Riding Out a Relapse

I want an MRI :/

 

I see my Neurologist today and I’m actually going to ask for an MRI.Fotosearch_k2478801 I’ve been on Tecfidera for quite awhile now and I’d like a comparison picture, a before and after if you will. I’m sure I had one just before I started the new drug. We’ll see what they say.
It’s time now to make that list, the one of symptoms since my last visit. I always seem to forget at least one while I’m there. Because I try to focus on the positive, “in my mind” I make small of issues when they’ve gone away. I’m learning to not “blow them off”. Who knows, maybe they can tell me something helpful. Like how to avoid that wall even when I see it coming!

What helps me to get through an MRI is definitely MEDITATION. If you haven’t tried it already…you should!

COMMENTS: What helps you get through an MRI?

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Filed under MS and Disease Modifying Drugs, MS and Oral Medication, Neurology, Stress Management

Sex and MS

I’m finally doing it, writing about MS and sex.images There’s a LOT to include. LOTS of possible sexual Dysfunctions and I am an expert on none of them so I’ll try to keep my information sharing down to what I have actually experienced. You can find everything else about this subject somewhere else on the worldwide web.

The thing I noticed early on in my MS life was reduced sensation in the vaginal area. Strangely enough, this didn’t freak me out. It was a very localized area about the size of a dime, and only on one side. Since I was having problems with numbness on that side of my body in general (leg, arm, face) this struck me as…just interesting. It helped that everything around that localized area felt quite normal. All things about this disease back then were new to me; this was just one more thing. I DID NOT, however, mention it to my doctor. It was just way too embarrassing to talk to anyone about except my husband.

One of the very first things I worried about when diagnosed was, would I live? would I walk? And, would I have a normal/healthy sex life? For me, that last one was synonymous to, healthy marriage. I was in my very early 30’s and had a long life/marriage, ahead of me. It was all so overwhelming in the beginning that I stopped with, “will I live? and, will I walk”? When I decided the answer to those two things were a resounding yes, I didn’t have the energy to worry about the third one anymore. It was just too complicated. My husband on the other hand… did.

Years later when I brought it up to him, “Honey, do you remember when?” I found out that he not only remembered but, he knew the exact name of what had caused it. I don’t know why I was surprised. He had researched it, and everything else under the sun that could possibly affect our sex life, now that I had MS. How thoughtful of him.

The Nervous System

The human nervous system is divided into two parts. The Central Nervous System (CNS) is composed of all of the nerves found in the brain and spinal cord.

In my very limited knowledge, Multiple Sclerosis is a disease of the Central Nervous System. The inner organs needed for survival, are not generally affected by MS, that is the job of the Peripheral Nervous System, and because of this, generally affects the extremities. This is why MS does not directly affect our hearts ability to pump blood or our lungs ability to bring in air. This is good, yes?

The Peripheral Nervous System (PNS) does consist of thousands of nerves that connect the spinal cord and the brain to our vital internal organs and the muscles that aid in their functioning, as well as to our sensory receptors. Ultimately these nerves DO need to convey their information to the brain, and they want to receive instructions  FROM the brain.(Special sensory receptors are activated by physical modalities such as visible light, sound, heat, physical contact, etc .

More to the point:

Peripheral Neuropathy

Damage to the peripheral nervous system, which again, is the vast communications network that transmits information from the brain and spinal cord, the central nervous system, to every other part of the body. Peripheral nerves also send sensory information back to the brain and spinal cord, such as a message that the feet are cold or a finger is burned, or the vagina is numb. Damage to the peripheral nervous system interferes with these vital connections. Like static in my radio, peripheral neuropathy distorts and sometimes interrupts messages between the brain and the rest of the body.

Because every peripheral nerve has a highly specialized function in a specific part of the body, the symptoms that can occur due to nerve damage is endless. Some people may experience temporary numbness, tingling, and pricking sensations (paresthesias), sensitivity to touch, or muscle weakness. Others may suffer more extreme symptoms, including burning pain (especially at night), muscle wasting, paralysis, or organ or gland dysfunction. People may become unable to digest food easily, maintain safe levels of blood pressure, sweat normally, or experience normal sexual function. In the most extreme cases, breathing may become difficult or organ failure may occur.

Even more to the point, I experienced:

Vaginal Paresthesias

In this case, temporary numbness in the vaginal area, and based on my research…this could have been much worse.

So…don’t sweat the small stuff!

Speaking of my research, these are the websites that I used. You can call me an internet snob but the truth is anyone can put up a site that says anything. For matters such as these I prefer to stick to more reputable sites like:

girlBooKimages

The National Institute of Health

http://www.ninds.nih.gov/disorders/peripheralneuropathy/detail_peripheralneuropathy.htm

The Center for Disease Control and Prevention

http://www.cdc.gov/search.do?queryText=peripheral+nervous+system&searchButton.x=0&searchButton.y=0&action=searc

The U.S. National Library of Medicine

https://www.nlm.nih.gov/

COMMENTS: Your comments are more than welcomed, they are needed. This disease can cause a million weird things to happen and nothing helps more than knowing that you’re not alone. I never mentioned this to my doctor but I DID discover on one blog post out of the millions I had read (exaggeration) that it had happened to someone else. I didn’t leave a comment and I don’t know her name but, gee, am I grateful that she hit the “publish” button.

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Filed under Awesome Sex, Uncategorized

Not taking my Ampyra anymore?

Totally Random Thoughts:

I’m considering not taking my Ampyra anymore.Ampyra_and_pills Any thoughts?

I sometimes feel like I would walk better if I just tried harder. Maybe concentrated more. If I were to gain some weight I wouldn’t be so easy to blow off balance.

Your thoughts:

Love, marriage and MS:FBwcB “In sickness and in health”, takes on a whole new meaning.

Your thoughts:

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Filed under MS and Marriage, MS and Oral Medication

The Best Cure for A Lousy Day

Laughing helps 😀

Good Time Stories

If yo are having a bad day and you are feeling depressed, sad or down and out, then today’s video is just for you! While you watch it, you won’t be able to be anything but a little happier!!

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I don’t know how much time I have left, so I want to run fast”

RUNNER-4master675

http://www.nytimes.com/2014/03/04/sports/for-runner-with-ms-no-pain-while-racing-no-feeling-at-the-finish.html?emc=eta1&_r=0

This young lady inspires me to make everyday count; live life to the fullest and have no regrets. Do it now, life is short.  To not worry about what anyone else thinks when they see me stumble, even fall. She inspires me to go to the gym, and work harder while I’m there.

Comments:

What’s your take away?

RUNNER-4master675

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Filed under MS and Exercise, Uncategorized

MS and my new job update

At least once a day I feel overwhelming excitement, love and connection.magic_schoolbus At least once every other day I feel fear, anxiety, and sadness. And then every three days, I wonder if I can do this. But NEVER have I felt like… I can’t.

The overwhelming love and connection comes from the kids. Some can’t wait to say “what’s YOUR name”. Like Thinn, the little Asian 5th grader who left her seat, going against the flow of kids entering the bus, to sit next to me. We talked only 10 minutes or so but, when she left the bus, she stood on the sidewalk after the others had left; staring at me. I was so happy that I saw this and could wave goodbye as the bus pulled off. Her face said that, that was what she was hoping for, as she bounced up and down to wave back.

The fear and anxiety come from having a hard time walking up the walkway, fearing that people must see me struggling; holding on to the hand rail constantly, even when it’s wet, cold and icy. Losing my balance when I get to the end of the rail, grabbing for the only thing there now…snow. Not very supportive, that stuff. Could have been a disaster but, I caught myself just in the nick of time.

The sadness comes from not being able to do the simple things that I used to take for granted: walking up a hill, in a straight line, or climbing up steps. It’s like losing a friend. Not a BEST friend, but still a friend.

The self talk creeps in now, with the doubt, that voice that wants me to give up. The voice in my head that feels sorry for me, has little faith, and doesn’t think I can do it.

I speak to NO one at work. It’s not safe, so I hear no other voices to shut this one up. I have made a couple of friends at work, and after close examination, do feel I can talk to them…a little. I go to Doc with my negative self talk, and he says, “Sounds to me like you’re trying to talk yourself out of this job.” The voice in my head screams, “No Doc! No! That’s not it at all!” but, I realize he’s right.  That’s the voice in my head… not the real me. The real me has a kind voice, is a cheerleader, and super supportive with 100% faith that this is the RIGHT thing to do. The real me focuses on all of the positive moments that support this idea, this kind voice; like Thinn, on the sidewalk. Every now and then, I talk to Doc for a reality check of what the other voice is trying to do, make me fail. Then, I turn it off.

KindrgrtnBsComments:

Have you gotten back into the workforce after having to be out of it for a while? Were you successful? What roadblocks did you encounter? What did you find helpful in sticking it out?

 

 

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Filed under Stress Management, Uncategorized