My New Normals

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Diagnosis (Part 1)

Something weird was happening with my vision. No big deal. Periodically I felt a brief jolting pain shooting from my left eye. Transient pain. Lately, after my jogs in the…

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All Is Well

Nicole Lemelle

– 21 March, 2013Posted in: Acceptance, Authentic Happiness, chronic illness, health, New Orleans

I can remember years ago when the focus of my life wasn’t multiple sclerosis. There was a time when I wrote emails that didn’t pertain to MS and the subject didn’t dominate my every conversation. But unfortunately those days are over.

It bothers me that my “new” life is all about MS. Sometimes I forget that there’s more to me than multiple sclerosis.

I use to think it regrettable that you guys didn’t know me before MS. I was so active. But now that I think about it, I’m still very active. It’s just a different type of active. I participate in riding horses on a local farm. I’m even presently seeking out more MSers to join me through the National MS Society. I do modified physical workouts, I study the Spanish language, I blog and write and I read incessantly. Lastly I watch as much TV as I can fit into my schedule. I’m not sure if that’s good or bad.

So, what do you do in your free time?

I wanted you to know that life is not all bad. We may have to plan a little more than others, but life is not all bad. The horrible stuff just makes for better reading.

Thanks to you guys, I now know that the woman I am beneath the MS continues to shine through and most importantly that there’s more to us than multiple sclerosis!

Tags: ALS, chronic illness, Morrie Schwartz, MS, MSers, multiple sclerosis, National MS Society, therapeutic horseback riding, workout

Another New Drug

Nicole Lemelle

– 16 March, 2013Posted in: Acceptance, Authentic Happiness, chronic illness, Moving forward, MS, Multiple Sclerosis

What do you think about the new oral pill BG-12 for MS?

It’s still going through rigorous trials and the last I heard it would not be out until March of this year. Moreover, it’s intended for patients with the more common form relapsing-remitting MS. I on the other hand have an advanced case of secondary progressive MS. I have tried many different medical therapies and I’m starting to feel like a pig grubbing on table scraps thrown his way.

“The two new studies, published online in The New England Journal of Medicine, found that the drug BG-12, developed by Biogen Idec, reduced relapse rates in patients with relapsing MS by about 50 percent. The drug also significantly reduced the frequency of new brain lesions often associated with these attacks, and slowed the progression of disease compared with a placebo.”

Will you switch therapies? Or better yet, how emotionally invested are you in what you’re taking now? Personally, I’m not attached to Copaxone at all. I’ve seen a continual decline since I’ve been on it.

I get confused though; because all these drug treatments are simply supposed to slow the progression down, not necessarily halt it. So am I asking for too much from a pharmaceutical treatment? Or are they helping on levels I’m not acknowledging?

I do realize that if I wasn’t actually taking anything, I could be much worse. I just learned of another blogger whose ill health lead him to end his life! Despite all my complaining, I’m nowhere near his physical state and I thank God everyday for that gift. I do respect his choice, as I wasn’t living his plight. I feel deeply heartbroken for him and his family. I somehow think the best homage I can pay is to continue doing what I can. BG-12, Baclofen, Pumo or not. (By the way I decided not to pursue the pump I mentioned in an earlier post.)

This time around I won’t get my hopes up on this BG-12 therapy. I’m going to continue my relatively full schedule of modified workouts, horseback riding, writing and spending time with family and friends.

After all, it can’t get much better than that, right?

Tags: baclofen pump, BG 12, biogen, chronic disease, Copaxone, disability, horseback riding, MS, MS pill, multiple sclerosis, relapsing remitting multiple sclerosis, Secondary Progressive Multiple Sclerosis, switching therapy, therapeutic horseback riding, treating multiple sclerosis

Searching For Positive

Nicole Lemelle

– 11 March, 2013Posted in: Acceptance, Authentic Happiness, chronic illness, health, MS

I hate multiple sclerosis. I hate myself for getting it even more.

I really don’t hate myself I just get so mad sometimes. I just don’t know who to be mad at.

So who’s to blame?

I guess no one.

Since I really have no one to point my anger towards, sometimes I just internalize the resentment. I try to stay positive but it doesn’t always work. Everyday at some point, doubt creeps into my mind about my ability to maintain this battle against the catastrophic effects of MS. It causes everything to be put on hold and defers episodes of my life. MS is constantly evolving; sometimes everything is okay and the next day a crisis occurs. It’s like a dark cloud continuously hanging over my head causing me to repeatedly look for a break in the storm.

Everyday I dream of a silver lining that will nudge me forward when it seems that all hope is gone. Those rays of sunshine that help me make it through the day. And just when I am about to give up, it reveals itself. Sometimes it isn’t obvious and I may miss it at first, but once I open myself up to receive it and pay attention…BAM! There it is!

It might be a call from a friend or a message from a stranger on the Internet. Sometimes it’s the FedEx guy delivering a package and asking me how’s my week going. The other day I was feeling tired and weak then I remembered it was my mother’s birthday and I temporarily felt better.

I have never won the lottery but these rays of sunshine that I receive everyday are at least a small blissful equivalent. I believe something positive always appears after something negative has happened. So whenever I’m down because of a symptom I try to look for the positive that I know is coming.

Tags: chronic illness, Depression, happiness, MS, ms sucks, multiple sclerosis, postive

Sad Not Crazy

Nicole Lemelle

– 5 March, 2013Posted in: Acceptance, chronic illness, Depression, health, Moving forward, MS, Multiple Sclerosis, Sadness, Walking

Can I be sad?

Whenever my friends are sad about something everyone around them seems to understand. People tell them, “A good cry will do you good”. Well, when I cry people say, “Maybe you should see somebody about your depression.”

Depression?

What depression?

I’m not depressed!

I’m just sad that my legs aren’t working today. I’m upset that I just slept 10 hours and I’m still too tired to get out of bed. I’m mad that I can’t enjoy a movie at the theater because I have to go to the restroom five times in an hour. That’s not depression that’s a legitimate reason to be disturbed.

Don’t get me wrong, I am all for incorporating psychological therapy into the treatment of a disease. I have in the past used a social worker and a psychotherapist to help me deal with my illness. But that doesn’t mean I’m not a stable person who can’t handle adversity on my own. On the contrary, I believe people who suffer with a chronic debilitating disease are stronger than most. Not because we are born stronger than everyone else but because we have to be stronger in order to live a somewhat “normal” life.

When I cry everyone seems to be worried that I am going to hurt myself. I understand the concern but please step into my shoes. Since being diagnosed I have lost and regained my vision, spent 3 weeks in rehab after an exacerbation and lost my ability to safely walk alone. Now ask yourself would any of these events make you cry?

I just want the same consideration.

So please my friends, just like everyone else, can I also have a “good” cry?

Tags: chronic illness, cry, Depression, loss of vision, MS, multiple sclerosis, progressive disease, Psychology, psychotherapist, rehab, sad, sleep, tired

Grasping For Straws

Nicole Lemelle

– 26 February, 2013Posted in: Acceptance, chronic illness, health, Independence, Moving forward, Multiple Sclerosis

I consistently try to acknowledge that many people may consider me a best-case scenario for living with a chronic illness. Let me also openly say that my family and friends are of utmost support. It’s the never ending dependency on them that’s wearing me down. I want to go about life on my own terms. I want to go where I want, when I want and with whom I want. No questions asked. I realize that sounds like something my younger self would say, but that’s exactly what I sometimes feel multiple sclerosis has dragged me back to. The truth is that Nicole died thirteen years ago when MS entered my life.

I’m embarrassed to truly admit that I’ve only recently acknowledged to myself that I will never be who I use to be.

The dying optimist in me always thought that if I got on the right medicine, did the right physical therapy or perhaps the right diet that I’d somehow see a resemblance of my former self.

Yeah right!

I’ve been consumed with trying to dodge these nasty, hurtful bullets of MS. I’ve been hit a couple of brutal times leaving some long lasting scars behind. Scars I’m learning to live with. My dad’s doctor said in regards to my fighting multiple sclerosis, “It’s like grasping for straws”. Intellectually I understand this, as I am well aware there’s no cure, but what’s my alternative? I’m still here and insist on maintaining the highest quality of life possible for my family and me. But at some point I have to realize that chances are I will not dramatically improve physically. That’s a scary thought, though it’s not the case for everyone. The worse some will see is a limp or maybe not even that. Moreover, this disease has been proven to hit black women harder. The only thing that can continually morph into something better is my attitude and perspective. That in itself brings me a bit of much needed solace, in fact I wish the best-case scenario for all of you too.

So I guess opting to pretend my shenanigans will actually effect change in my outcome is a bit of denial mixed with hope. Each served in the right amount I actually recommend. Yes, I crave my old independence. I sometimes cry for it. I still morn the loss of it. But after I get a grip on reality and become grateful for what I do have, I wipe my tears, take a deep breath and then…continue grasping for straws.

Tags: best-case scenario, denial, family, friends, independence, loss of independence, M.S., multiple sclerosis

No Escape

Nicole Lemelle

– 15 February, 2013Posted in: Acceptance, chronic illness, health, MS, Multiple Sclerosis, Walker

I would love to say one day, “I used to have MS.”

But since that’s not going to happen… at least not this weekend, I think I will stick with reality.

In my quest to escape multiple sclerosis, I’ve been weighing the possibility of getting a Baclofen pump implanted in my abdomen to combat my tight leg muscles. According to the Baclofen pump website,“This technology is to loosen overly tight muscles. The key is a surgically placed pump that continuously delivers medication to your spinal cord fluid.”

Sometimes my legs are like logs and then others times they are “normal”. When they are log like it can be pretty grueling to accomplish everyday tasks. Making it to the restroom on time is more difficult and getting in and out the bathtub is nearly impossible.

In my dream world, I’ll get this pump that delivers a muscle relaxant and then with a little strength training, I’ll be able to walk with a walker again. I just don’t know if that’s how it actually works in the real world. In all likelihood I’m probably not stiff enough for this therapy. Also, I’m not sure if Medicare covers it.

The truth is, my muscles are too weak for walking so tight legs may not even be the main problem. I am currently taking the Baclofen pills so I may just stick to the oral medicine.

Either way, the one thing I’m sure of is that there’s no escaping MS.

But that won’t stop me from trying.

Tags: baclofen, baclofen pump, MS, multiple sclerosis, spastic, spasticity, stiff

Horse-N-Around

Nicole Lemelle

– 12 February, 2013Posted in: Acceptance, Authentic Happiness, Bladder Issues, chronic illness, health, Independence, MS, Multiple Sclerosis, Physical therapy, Walker, Walking

The reason for my outbursts of relatively gloomy posts is because I just can’t seem to get a handle on what’s happening to this MS body. I just want some sort of reprieve. Now, I say this fully aware that things could always be worse. I am learning from your comments and my readings that the essence of who I am is still here. It’s perhaps why I continue to blog through this onslaught of “new normals”.

I just don’t know of any of my MS friends who are continuing to encounter decline. Or do I? Please let me know because I’m feeling alone on this one.

One good thing is that I recently started horseback riding. I began the process of registering a while back. There was quite a bit of paper work involved. I refer to it as legal mumbo jumbo. But once I got past that I was on my way to the horse farm.

Basically, the type of hippo-therapy I am doing mimics the action of actual walking. It works my core tremendously and also the muscles used for walking. I’ve been riding for three weeks. I go once a week for 45 minutes. I had to work up to 45 minutes of course, at first lasting for only 20 minutes. Since starting I find getting up out of the bed easier, so I think I may be experiencing the benefits already.

Though, I may be on this slippery slope, it’s so important who I surround myself with. I try to associate with supportive folks that love and help me in all my endeavors. I mean riding horses with spastic legs, minimal core strength and slight cognitive impairment is pretty risky business.

But listen, if you tell me this may move me closer to walking with even a walker then…SADDLE ME UP!

By the way they call it therapeutic horseback riding and it may be covered by your insurance if you get a prescription from your doctor. So far I recommend it. I guess Ann Romney was on to something.