Authentic Happiness Archive

MS and Relationships

– 6 May, 2013Posted in: Acceptance, Authentic Happiness, chronic illness, health, MS, Multiple Sclerosis

I’m sure we’ve all felt this way in one way or another. You don’t have to have a chronic disease to feel this way. I want to be all that can be for those whom I love around me. Due to one excuse or another I find that I am not.

I just realized, I’m not the big sister I want to be. I may be falling short. I’ve been so wrapped up in what’s going on with me.

You know I rely heavily on my husband, Tommy. If you follow this blog you also know that my parents are more involved in my life than I’d like to admit. But I don’t often talk about my dearly beloved little sister. She’s six or seven years younger depending on the time of year. She’s taller than me and she has an adorable 10 year-old son. Actually, she was taller than me long before I was in a wheelchair. She’s opinionated and feisty. Even family members tend to think she’s the oldest. She always owns the room with her bigger than life personality. I admire that.

I worry that I’m not giving my “little” sister the attention that she deserves. People I trust have rightfully called me selfish in the past. I have to consider that I’ve let my illness cover up the rest of me; including my fragile relationships. My sister and I have the same ups and downs as most siblings; I may just scrutinize ours a bit more.

I have a lot of work to do in living with MS and letting people in at the same time. I know that who I am inside, multiple sclerosis cannot touch… unless I let it. I know that she loves me too, despite MS. As a matter of fact, I’m sure that my disability matters more to me than her.

So, as I sit here anxiously awaiting her short visit from out of state, I cross my fingers and hope that all goes well.

I can’t wait to see her!

Tags: chronic illness, MS, multiple sclerosis, sisiter

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

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.

Tags: Ann Romney, horse, horseback riding, insurance, MS, multiple sclerosis, therapeutic horseback riding, walker

Just Tired

Nicole Lemelle

– 22 January, 2013Posted in: Acceptance, Authentic Happiness, health, Moving forward, MS, Multiple Sclerosis

Tired of MS

I feel as if I’m writing today with a imaginary gun pointed at my head. Ironically, I say that because I’ve finally reached a point in my life where things are okay. Well, I’m embracing my limitations.

So, with that being said I did’t feel I had anything to share. I’m happy. Who wants to hear about that??? It’s sad, but my most popular posts are never the upbeat ones! My husband on the other hand really wants me to keep writing. In fact he is acting as if it is detrimental to my continued well-being and also this marriage! How about that? He says I don’t do well without having something constructive to contribute to.

Now, in the past this may have been true. But I refuse to admit this to him.

Meanwhile, I have finally started reading a book another blogger at Diva on Detour recommended to me some time ago. It is called “You Are Not Your Illness”.

It took me so long to open it up because deep down I really did believe I was my illness. I had trouble seeing it any other way. But I love some of the lessons I’m gaining from this book. One of the very first things I read is that God has chosen me for this journey. I never thought about it like that. It was always, “Why me?” But to hear that I was chosen seemed to shift responsibility back to me. Meaning, I can do the best that I can with this and possibly even help others out there in similar situations.

It’s funny that I would say that, because that’s exactly what I’m doing here. I’m just tired that’s all. Just tired.

Tags: chronic illness, limitations, MS, multiple sclerosis, writing

Imperfect Present

Nicole Lemelle

– 7 January, 2013Posted in: Acceptance, Authentic Happiness, chronic illness, health, Moving forward, MS

I am playing the cards that were dealt to me.

2013. Happy New Year. Wow, we made it! To be honest, I never thought I would be this disabled ever! But here I am and I’m going to give it my all. Don’t get me wrong I do get down because of my situation. Things just aren’t the way I would like them to be but I know that my attitude today is of utmost importance. I truly believe in diligently playing the hand you’ve been dealt, multiple sclerosis and all!

My new surroundings make things nice. Even though right now I’m truly content, I still just keep waiting for things to not be so difficult and trying. When is it going to get easier? I know I have a progressive disease, but that doesn’t make it any easier to accept the new found limitations I face.

In the beginning, like most I was relapsing remitting, now I’m secondary progressive. What’s next? Do I just continue to slowly lose abilities?

The sad thing is, I think so.

That’s why in the face of this unforgiving reality it would behoove us to make the most of what we have. Even if what you have is unacceptable to your former self.

The answer for me is to strive to be continually grateful for my imperfect present.

John Lennon always has great quotes.