Lesions Archive

23

Jokes On Me

pointing

Find a place inside where there’s joy, and the joy will burn out the pain.

Do you ever feel as if you are the last one to get the joke?

Then you figure out the reason why you don’t get it.

It’s because; you ARE the joke.

I have finally realized that the MS joke is on me. Sometimes I wish I could just take a ship to mars where I can start a new life and escape my loneliness. I have felt so weak, for so long that I can’t remember when I didn’t feel exhausted all the time. Everyday I’m just trying to keep my head above water. But my MS is so heavy that I’m nearly drowning from the weight of carrying it on my shoulders.

At times I feel like I’m losing all control of my life. Like my lesions and my body have conspired against me to destroy my happiness. While my psyche is in the background laughing and screaming, “Encore! Attack her again!”

It’s like the MS is being entertained by my plight and enjoying every minute of it.

They say it’s better to feel pain than to feel nothing at all. Whoever said that must not have had MS because some days the emotional pain I feel is so bad that I would never wish that feeling on my worst enemy.

Believe it or not, I’m not bitter. I’m just frustrated. I have no problem carrying my personal burdens like everyone else; I’m just tired of being the punch line to this horrific joke.

23

Greater Than Myself

That’s me in church looking for answers.

“There is no passion to be found playing small – in settling for a life that is less than the one you are capable of living.” – Nelson Mandela

Strange how I continue to pray to a God, who has put me or has allowed me to be this way.

I went to my neurologist yesterday, a visit that never offers comforting answers or clever solutions. He does his job. He is a bona fide neurologist. Not God, that’s for sure.

Years ago, when I was first diagnosed, I received an MRI (magnetic resonance image) scan. The MRI is a diagnostic tool used to treat multiple sclerosis. It tells doctors how many lesions or scars you have on your brain (hence multiple). Every time you get a new lesion they proceed to change your medication. I have in turn tried nearly all medications that are offered including chemotherapy.

I nevertheless asked my doctor, “Why have I not had an MRI recently?” (Keep in mind he is the same doctor that already told me, I have too many lesions to count.)

He began explaining that if he did an MRI and it showed new lesions, I’ve already been on all the drugs available. Because of that, there is nothing more they can do for me.

That was hard to hear.

In the past, I would have exclaimed under my breath, “Oh, but you don’t know my God!”

But the truth is neither do I.

I do know however, that through this all, there must be someone greater than myself that has kept me going thus far.

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7 Things That Could Increase Your Risk of MS

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Content provided by: Black Health Matters

Multiple sclerosis (MS) is a mysterious disease. Who gets it, why they get it and how each case of the disease can be vastly different from the next one all have medical experts pretty puzzled.

What we do know: MS is an autoimmune disease that occurs when your immune system attacks your central nervous system. We don’t know what triggers the process, but here are seven factors that might contribute.

Gender. Montel Williams might be the celebrity name that comes to mind when you think about MS, but the disease disproportionately strikes women. And according to the experts, the gender gap is widening. It used to be two women to every one man, but new studies show it is approaching four women to every man. Another recent study says black women are more likely to contract MS than previously thought.

Genetics. Does someone else in your family have MS? Your risk is likely increased as a result of this. The risk is 1 in 750 for most folks. It’s 1 in 40 for those with a close family member with the disease, and 1 in 4 if your identical twin has it.

Birthdate. Spring babies are at higher risk of MS, according to a Finnish study. What explains this phenomenon? Your mom’s low levels of vitamin D during winter pregnancies.

Age. Anyone, including children, though that’s rare, can be diagnosed with MS, but it’s more likely to occur when you’re between the ages of 20 and 50.

Geography. You are at higher risk for MS the farther you live from the equator. Sweden? Check. Louisiana? Not so much. Researchers believe this might have something to do with how much vitamin D we have. Our bodies make vitamin D in response to sunlight. Live far from the equator, you make less.
Smoking status. Yet another reason to give up cigarettes: Smokers and ex-smokers are more likely to be diagnosed with MS than someone who never smoked. The more you smoke, the greater your risk. Though your risk is elevated even if you no longer smoke, quitting can help. The disease seems to progress more quickly in current smokers.

Autoimmune disease clusters. Some autoimmune conditions tend to occur together. That means if you have inflammatory bowel disease, you might also develop MS. There is some good news on this front: The link between lupus and MS doesn’t appear to be as strong.

Content provided by: Black Health Matters

62

Fatigue Factor

tired

Trying to explain what MS feels like is like trying to explain what the color pink tastes like.

Even if you give an exact description of your symptoms and flare-ups most people still don’t understand the nuances of the disease. Illustrating the various sensation distortions and twinges to someone can make you feel and sound wacky. I usually just say Multiple Sclerosis is like an uninvited stranger who enters your house and slowly destroys everything.

The most significant symptom that I try to get across to people is the fatigue factor. For me it is my biggest enemy and lately it has been getting worse. I never used to get this tired. Some days I’m fine and other days I don’t physically have the energy to stand up. It’s as if my lesions are sucking the life right out of me.

The other day, after saying goodbye to my husband, I was so tired after closing the door behind him I laid down in the foyer doorway until he came back 15 minutes later. He almost hit me with the door when he entered the house. He asked me why I was on the floor and I quickly said I was cleaning something I had spilled. I doubt he believed me but luckily he really didn’t make a big deal out of it. Unfortunately these types of episodes are becoming more and more common for me.

Multiple Sclerosis is an insufferable disease and I am beginning to realize that its effects are out of my control. Despite that fact I will listen to my doctor, continue on with my life and pray for the best. It’s just one of those things I’ve been handed and can’t change.

We all have burdens in our lives I just wish mine didn’t come with a fatigue factor.

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Types of Multiple Sclerosis

Healthline

Content provided by: Healthline

What’s Your Type?

Multiple sclerosis (MS) is thought to be an autoimmune, inflammatory disease affecting the central nervous system and peripheral nerves. It can be unpredictable and in some cases disabling. But not all forms of MS are the same. To help distinguish between the different types of the condition, the National Multiple Sclerosis Society (NMSS) identified four distinct disease categories.

Four Forms
To accurately define the different forms of MS, in 1996, the NMSS surveyed a group of scientists who specialize in MS patient care and research. After analyzing the scientist’s responses, the organization categorized the condition into four primary types:

relapsing-remitting
primary-progressive
secondary-progressive
progressive-relapsing

Common Category

The four categories defined by the NMSS are now relied upon by the medical community at large, and create a common language for diagnosing and treating MS. The categories’ classifications are based on how far the disease has progressed in each patient.

The most common type is relapsing-remitting MS. According to the National Institutes of Health (NIH), this form affects around 90 percent of people who have MS. The NMSS provides a slightly lower estimate, suggesting that approximately 85 percent of patients have this condition at the time of their diagnosis.

Progressive Types of MS

While the vast majority of people with MS have the relapsing-remitting form, the NIH reports that around 10 percent have one of the three progressive forms of the disease: primary-progressive, secondary-progressive, or progressive-relapsing. Each of these three types indicates that the disease continues to worsen without improvement.

The NMSS estimates that approximately 10 percent of people with MS have primary-progressive MS at the onset of the condition, and only five percent have progressive-relapsing MS at initial diagnosis. Without treatment, about 50 percent of patients who begin with a diagnosis of relapsing-remitting MS will advance to secondary-progressive disease within a decade of their diagnosis.

Relapsing-Remitting MS

When you have relapsing-remitting MS, the most common form of the disease, you may experience:

-clearly defined relapses or flare-ups that result in episodes of intensive worsening of your neurologic function

-partial or complete remissions or recovery periods after the relapses and between attacks when the disease stops progressing

-mild to severe symptoms, and relapses and remissions that last for days or months

Primary-Progressive MS

This form of MS progresses slowly yet steadily from the time of its onset. Symptoms stay at the same level of intensity without decreasing, and there are no remission periods. In essence, patients with primary-progressive MS experience a fairly continuous worsening of their condition. However, there can be variations in the rate of progression over the course of the disease—as well as the possibility of minor improvements (usually temporary), and occasional plateaus in symptom progression.

Secondary-Progressive MS

Secondary-progressive MS is more of a mixed bag. Initially it may involve a period of relapsing-remitting activity, with symptom flare-ups followed by recovery periods. Yet, the disability of MS doesn’t disappear between cycles. Instead, this period of fluctuation is followed by a steady worsening of the condition. People with secondary-progressive MS may experience minor remissions or plateaus in their symptoms, but this is not always the case.

Progressive-Relapsing

In this relatively rare form of MS, people experience their condition as steadily worsening, yet also experience clear relapses in the form of acute flare-ups. In some cases, there is no recovery from these flare-ups, although in other cases there is recovery. The difference between progressive-relapsing MS and relapsing-remitting MS is that in the former type, the periods between relapses involve continuing progression of the disease.

Type Casting

Early MS can be difficult for doctors to diagnose. As such, it can be helpful to understand the characteristics and symptoms of MS at the time of initial diagnosis—particularly since the vast majority of people with the disease exhibit characteristics of relapsing-remitting MS.

Although MS currently has no cure, it is not normally fatal. In fact, most people who have MS never become severely disabled, according to the NMSS. Identifying MS early at the relapsing-remitting stage can help ensure prompt treatment to avoid developing more progressive forms of the illness.

Content provided by: Healthline

101

Why I Cry

Why I Cry

I feel like crying all day. I’ve been at it for 2 hours, so I’m well on my way. My husband says I’ve been acting differently. I guess he should know because he understands me better than anyone else and that sometimes includes myself. Once again he is right. I am acting different. But, it’s not because of something he did. It’s because I am different. I am a different person. Perhaps he’s thinking of the old me. We both must miss the old me. But no one misses her more than me.

That’s why I cry.

Right now I don’t know who I am. I know who I was. But I can’t find that person. Sure there’s pieces of the old me here and there but the package has changed. The person I see now is a stranger. That’s not me in the mirror. I’m not like that. That person looks older than me. That person looks broken. That person needs help.

I’m independent. I’m strong. I’m authoritative. The person I see in the mirror is none of that. No one listens to her. No one takes her seriously. When she talks she stumbles on her words and her speech is slurred. When she is amongst strangers you can feel the pity in the air and see it in their eyes as they speak to her. But how can you blame them because when I look at her I pity her too.

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I know I should embrace her but it’s hard. Every picture, every memory, every conversation about the old days leaves me longing for my past self. I guess I have to get to know her. So as I sit here looking at her in the mirror she cries for me.

She cries with me.

And even though I’m trying to accept her I still wish she would just go away and bring the old me back. But until then I will recognize her as me and hope everyone else will as well.

As we cry together.

24

Forever Grateful

I don’t know how I would be able to manage this horrific disease if I didn’t have so many beautiful people in my life. I receive so much love and support and I would like to thank my family, friends, and Internet buddies for all their encouragement and assistance. I wrote these words especially for you.

You always see the smoke before the fire
When my spirits are down you lift them higher

You remember for me when I forget
You steady the needle before you inject

You talk for me when I can’t speak
And hold me up when I am weak

You stand for me when legs will not
Just hearing your laugh makes the pain stop

You’re my best friend, my shinning star
When I need help you’re never too far

You say you understand when I know it’s a lie
But I appreciate your empathy it helps me get by

You still ask my opinion when a decision is made
Even though my past judgments should make you afraid

You’re always there anytime of day
When I reject everyone you come anyway

I hear you cry when you think I’m not there
You carrying my burden just isn’t fair

Despite all my moaning, complaining, and strife
You still keep me in your life

This disease is so very hard to live with alone
You have embraced when most would disown

Thank you family and friends for all that you give
I will be forever grateful for as long as I live