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37

Rainy Days

Rainy Day

As a child I was told that when it rained, it meant that God was crying. And his tears would wash away all of our pain and troubles. And still today, so many times when I pray, I pray for rain.

I also pray for a cure. I ask God to “fix” me. The sad part is I don’t pray for anyone else. Just myself. I know it sounds selfish but that’s what I do. I have become so consumed with getting better that the disease has made me selfish. Sometimes I neglect everyone around me, including the one’s I love the most, and that makes me sad.

My pursuit of normalcy also seems to have me waiting for someone to rescue me. Waiting patiently for Big Pharma to find a cure. Hanging on to broken promises of healing remedies and simple fixes. I hear them all the time. They’re all over the Internet and they come in my emails. These pills will repair your damaged myelin. You need to change your diet. Unblock your veins. Get more sun.

What’s a girl to do?

Who do I believe?

It all seems like a crapshoot and only the lucky survive.

Well, I want to be one of those lucky survivors. I love life no matter how hard it can be. I may complain and feel sad sometimes but that doesn’t mean I want to stop living.

But I must admit that I’m scared everyday. I wake up scared. I go to sleep scared. Everything just seems to be getting more difficult. Sometimes I wonder if this pain will ever let me go. I know I still have a life to live so I must carry on. And no matter how hard it gets on the surface, deep down I always know that I don’t want to give up. I just can’t give up. I can’t give up because I know I am being watched. I know I serve a special purpose.

And every time it rains, I look for that purpose.

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19

Spilled Milk

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To cry over spilled milk is to remain upset about a past loss or dwell pointlessly on past misfortunes. When milk has been spilled, it is gone and cannot be used. I have to remind myself that there is no reason to keep complaining because, just like the spilled milk, my life may never go back to the way it use to be.

For that reason, I’ve decided to move forward and stick with my new routine and drug regimen. It seems to fit me. But in order to reach that comfort level I had to let go of things I used to do. Release the responsibilities I used to fulfill, so I could usher in the person I want to become. Granted, it has taken me years to get here. I think the force that changed me was gratitude.

Instead of concentrating on the struggles, I’ve become vested in overcoming the struggles. When I lost the ability to type I got dictation software. Slowly, I’m coming to terms with this latest new normal. I’m learning to set realistic goals. Something I rarely do. I’ve fallen many times because of lofty intentions that poorly reflect my reality.

Acceptance for me is like a revolving door. I have to enter it again and again. It’s not about what I used to do before multiple sclerosis; it’s about what I do now despite it.

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“I do that because it releases the power that your life circumstances have over you. When things don’t go your way, you don’t become paralyzed by negative emotions such as anger, fear, resentment, or regret.’” -Cloris KyleIie Stock

39

Nature Of MS

MS time is running out

I’ve been so involved with my struggle with this disease that I neglected to realize how it might be impacting my family or how my increasing disability may be emotionally influencing them.

I feel that this especially applies to my father.

Each new phase of this disease slaps him almost as hard as it whacks me.

It must be hard for my parents having to watch from the sidelines. To see their child, no matter how old, go through a difficult challenge. My parents live about an hour away from me. I wonder sometimes if I tell them too much. I do occasionally review with them the things I intend on writing about. I do this because I don’t want anything to come as a surprise to them.

They witnessed firsthand my difficulty feeding myself. They see my husband helping me in the restroom. During weekend visits to my parents’ home, my mom often physically helps me get into the bed. She even sleeps close to my bedroom at night, in case I may need something. She tends to do what needs to be done in all situations.

I have to assure my dad a little bit more.

I realized this when I found out he asked my mom, “Is Nicole dying?”

My mother calmly responded with the truth, “She’s not dying. She’s just getting worse”.

I forget how I must look to other people who do not know the nature of multiple sclerosis.

22

My MS Odds

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Content provided by: Tammy Mahan of Healthline

Who Gets MS
There are almost two and a half million people worldwide estimated to be affected by MS. MS (multiple sclerosis) is not contagious, or inherited although there are a number of factors that determine a person’s risk for the disease. Factors for developing MS include:
•Ethnic background
•Geography
•Age
•Genetics
•Gender

What is MS?
MS (multiple sclerosis) is a disease affecting the spinal cord and brain that leads to a loss of balance, vision, muscle control, and sensation. A person’s own immune system causes damage to the nerves of the spinal cord and brain, which make up the central nervous system, when MS is present. It is an autoimmune disease meaning that it mistakenly attacks normal tissues in the body.

MS Patterns
There are two to three times more women with MS than men, leading to research about the hormone association to MS. Genetics has a role in who develops the disease but it is not inherited directly. There is a one in seven hundred and fifty chance of the general population developing MS; anyone with a close relative suffering from the disease has an increased risk of one in forty. The risk could increase in people that have a number of people in the family diagnosed with MS. The risk of identical twins developing MS is only one fourth, despite the fact they have the same genetic makeup, which means there are a few genetic factors involved.

When does MS appear?
•The ages of twenty to fifty are when most people get the diagnosis of MS.
•MS can be present in teens and young children.
•Scientists are trying to determine why those that are diagnosed with MS after the age of fifty progress faster with the ability to walk being affected.
•MS is less common close to the equator that it is at northern latitudes farther from the equator. There is research being conducted into whether vitamin D provides protection against the disease.
•MS is more common in Caucasians of northern European descent, although it occurs in most of the ethnic groups.
•There are variations occurring in geographic areas that have the same climate, which indicates a complex interaction among the factors such as ethnicity and geography.

Is MS increasing?
There is no evidence being found by epidemiologists to suggest that MS instances are increasing even though the number of people being diagnosed is higher than it was in the past. Improved medical care, increases awareness of MS and being able to more effectively diagnose the disease are the likely explanations for increased diagnosis of MS. The likelihood that physicians will communicate the diagnosis of MS to patients has increased as treatments that are more effective have become available.

Understanding MS Clusters
The perception that there have been a large number of MS cases occurring in a specific area or over a set amount of time is what defines a MS cluster. Areas where the clusters of MS (and other diseases) occur could provide clues to the genetic or environmental risk factors that might be triggers or causes for the disease. There has not been clear evidence produced for triggering factors, causes or MS factors from various cluster studies that have been performed.

Content provided by: Tammy Mahan of Healthline

0

Working Out With Multiple Sclerosis

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Content provided by: Black Health Matters

Though it might seem like exercising when you have multiple sclerosis (MS) is an oxymoron, even a small amount of physical activity can provide great benefits. In addition to being essential to overall well-being, exercise may even ease symptoms, and it could help you stay mobile longer than if you are inactive. Talk to your doctor or physical therapist before starting an exercise program because your workouts should be determined by your fitness level. If you don’t have balance problems and you’re able to ride a bike or run, you should. Here are options if you can’t hit the pavement:

Stretching. MS patients tend to lose range in motion in their limbs as muscles freeze. Stretching your arms and legs every day will help keep them moving.

Yoga. Downward facing dog and the lotus position help relax muscles and keep them flexible. Yoga is also good for maintaining balance. Tai chi’s slow, deliberate movements are another excellent choice for building muscle tone and increasing flexibility. Choose classes for people with disabilities.

Water exercises. Swimming and water aerobics are particularly good for MS patients, especially if your disease is causing increased sensitivity to temperature. And some movements that you’re unable to do out of water are possible in water, where your body is weightless.

Stationary bike. Can’t ride in the next BikeMS event? You can make use of a stationary bike. One study showed stationary bike participants reported improvement in their fatigue symptoms.
Resistance bands. Use resistance bands to duplicate exercises normally performed with barbells. Bands can also be used to assist with stretching.

Though multiple sclerosis may mean a change in physical activity and mobility, it doesn’t mean your life has to stall. If you can no longer continue activities you used to enjoy, talk to your doctor about new ways to stay active or about ways to make your old favorite activities more accessible.

Content provided by: Black Health Matters

0

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

22

Wonder Woman

Wonder Women

This week I am completely energized to keep moving forward.

Last week after a personal ferocious crying storm, brought on by this journey with multiple sclerosis, I eventually made my way to my laptop and …wrote about it. It was my way of trying to move beyond the hurt, getting pass the suffocating isolation and unimaginable fatigue.

Tommy, my husband, on the other hand, uncharacteristically suggested an increase in my anti-depressant. After visiting both my psychiatrist and social worker they agreed upon adding another medication to the impressive list I already drag around. So I’m now supposedly transiently taking not only Lexapro but also Cymbalta. I know I have to give it a few days, but so far things are going fine. No scary side effects and no crying either!

It doesn’t stop there. I have to do my part too. I have to engage in life by participating in as much as I can. Exactly the kind of things you run from when depressed. When I was busy crying I was focused on the things I could no longer do. I just wanted to hide in bed and shut every one out. This is what I got instead.

Long time friends from both high school and college dropped by. We talked about old times and new ones too. Another friend even gave Tommy a break by bringing me to a doctor’s appointment. She was new to my scooter, but graciously learned how to assemble and break it down to fit in her car. She stayed the afternoon; we ran errands and ate dinner at a local restaurant. Tommy even called me thirty minutes into our excursion to make sure I was okay. How cute! In fact for once I was able to bring dinner home for him.

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The point is I opened the door and allowed friends to see me for who I am now, regardless of what I could do the last time they saw me.

Little did I know my latest friend is an actual photographer. She showed up and we had a real photo shoot for Halloween. She even brought over the lights and costume too!