Moving forward Archive

The Other Side

– 13 May, 2013Posted in: Acceptance, chronic illness, Depression, health, Moving forward, MS, Multiple Sclerosis

“There is no need to suffer silently and there is no shame in seeking support.” – Catherine Zeta Jones

Sometimes I need help navigating this maze I’m living in. At times I feel lost. Lost in the unknown. Lost in a realm of uncertainty.

Sometimes I need help with things you can’t see. Things no one can see. Feelings I barely know are there. When these feelings manifest they can take over my life. Causing not only anger and resentment but also an unexpected sense of physical and mental pain. I try my best to fight back the pain, but sometimes it can be overwhelming.

I’m just so tired of MS right now. Everyday something is being taken from me. My vision, strength, and cognition are all up for grabs. I just want to escape.

But, how do you escape from the demon when it lives inside of you?

Still, I know that somewhere in my sadness there is happiness. I know this because some days I feel rich even in the midst of my pain. I have discovered that happiness comes from within. On those days that I find happiness, the pain disappears. I just need help reaching that point.

I need help getting to the other side of the pain.

Tags: catherine zeta jones, cogntion, Depression, fatigue, help, MS, multiple sclerosis, sadness, strength, support, vision

MS Milestones

Nicole Lemelle

– 29 April, 2013Posted in: Acceptance, chronic illness, Depression, health, Independence, Moving forward, MS, Multiple Sclerosis, Sadness, Walker, Walking, Wheelchair

Today is different. I’ve been having increasing difficulty typing. I previously promised myself that if this ever happened I would use assistive devices available to me. That is, no matter how humbling it may be. Because like it or not I’m not the same woman I used to be!

Now, today is different because I’m using dictation software in order to complete this post.

I guess you can say it’s a milestone of sorts. In fact over the course of the last few years every time I had to start using a new device I considered it a very big deal. Whether it’s my cane, walker, wheelchair, scooter or power chair, I had to accept my new reality. Or as we say every year it seems to be something, and here once again is one of my new normals. To be honest though, I saw this one coming. More often when I’m tired, I’m require help to do normal, easy, simple tasks; for example buttoning my shirts or putting on my own deodorant or sometimes even feeding myself! Thank God for my husband and my mom.

Fortunately, with this computer program I simply speak into the microphone on the computer and it in turn types what I say. I really, really didn’t want to use it or anything else. It was hard to accept any kind of help at first. But, I figured in order to keep with what I preach… I had to. Writing has become my outlet from MS. I’ll be damned if I let multiple sclerosis shrewdly yank that away from me too.

At first for me, like many others, multiple sclerosis meant only blurry vision. But look at me now. I imagine I’m going to accept my new typing limitation and move on to embrace this dictation software on my computer. I may even be drawn to purchase brand name fancy software. Who knows?

I’m even having problems using my computer mouse. My hands just will not listen to me. I did however read about a device that moves your mouse with your eye movement.

Maybe in a few months I’ll be ready to tackle that one.

Tags: computer program, hands, loss of vision, MS, multiple sclerosis, scooter, typing, vision, walker, walking, wheelchair

The CCSVI Option

Nicole Lemelle

– 22 April, 2013Posted in: chronic illness, Independence, Moving forward, MS, Multiple Sclerosis

I remember years ago when I was first diagnosed my neurologist confidently told me we’d probably see a cure in my lifetime. Now after thirteen years, I’m beginning to doubt him.

That’s the main reason I’m consistently looking for different options. I have always been told and believed that multiple sclerosis was a neurological disease. Well, there has been increasing talk that it’s in fact a vascular problem. I’m not going to pretend to be well versed in this, so I’ve pulled the following from The CCSVI Alliance website.

“CCSVI stands for “Chronic Cerebrospinal Venous Insufficiency,” a condition where people have obstructed blood flow in the veins that drain the central nervous system (the brain and spinal cord). Research indicates that CCSVI is significantly correlated with multiple sclerosis.

As a result of these venous abnormalities, the blood flow rate through the central nervous system back toward the heart may become slowed, and blood may reflux back toward the brain and spine. People with CCSVI have one or more blockages of the veins that drain blood from the central nervous system.”

The doctor who came up with this believes that by clearing the obstructions symptoms will be alleviated. This is similar to procedures commonly done in the heart.

Please understand this is an extremely simplified explanation I’m offering here. That’s exactly why I attended a free Doctors’ Roundtable: Exploring CCSVI & CSF in Neurological Disease this past week in New Orleans. It was hosted by The CCSVI Alliance. I was hoping that the event would provide a clear idea of what to do, but I must admit that I am as confused as ever.

I would love to hear what you guys think about CCSVI.

Tags: blood flow, CCSVI, central nervous system, Chronic Cerebrospinal Venous Insufficiency, MS, multiple sclerosis, Neurological Disease, neurologist, treating multiple sclerosis

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

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

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