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5

Shared Plights

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“People will forget what you said, people will forget what you did, but people will never forget how you made them feel.”
- Maya Angelou

I had my usual visit with my hygienist last week. Well, actually I haven’t been to see her in six months. So, I really didn’t remember who she was. When she entered the room we had to reintroduce ourselves to each other. I should say, she remembered me, but my MS mind didn’t remember her.

She asked me how my husband was doing, actually calling him by name. Then she asked how my MS was treating me. I told her everything was fine.

I, in return, inquired about her life. She looked at me and said, “I’ll tell you this because you can probably relate.” Then she continued to share with me her very personal recent medical encounter with ovarian cancer and subsequent chemotherapy. I was only expecting a small talk reply so you can just imagine how taken aback I was.

Immediately I realized how tenuous it was for her to even be at work. According to her story, it seemed like she had pain, got diagnosed, surgery, chemotherapy and then was right back to work all within a few weeks time. Of course, it wasn’t actually that streamlined, but it sure sounded like it.

I couldn’t help but feel a shared since of underline hope with her as she told me her story. We talked more as she cleaned my teeth and then we parted ways.

Although our plights can be significantly different, it seems at the end of the day we all just want to be heard. I think it helps us to free our innermost concerns and worries with those that can understand the best. And that’s usually someone who is in a similar situation.

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Swallow Test

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I have been having trouble swallowing liquids for about a year. It was never anything serious. I would sometimes cough after swallowing drinks.

But then, I began coughing vigorously. I was choking on everything I swallowed. Then one day while taking one of my many pills, I choked on a capsule. This time I couldn’t clear my throat. I couldn’t speak. My husband was in another room so I began banging on the dresser with my hand. Luckily he heard me and was able to help clear my throat of the pill.

This really scared me. I thought I was going to die. I called my neurologist and told him about it. He explained that lesions might have damaged my nerves as well as the area of the brain responsible for coordinating swallowing. He suggested I see a speech therapist.

Days later, after hearing my story, the speech therapist seemed very concerned. She explain, when swallowing difficulties are present, food or liquids that you eat may be inhaled into the windpipe instead of going down the esophagus and into the stomach. And once in the lungs, the inhaled food or liquids can cause pneumonia. She thought this might have been happening to me, so she set up a swallow exam.

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The swallow test involves a radiologist watching an X-rayed esophagus so they can document any noticeable swallowing difficulties.

They fed me food and drinks and X-rayed my throat as I swallowed. It wasn’t some great meal either. The food and drink had a substance called barium in it. The barium coats the esophagus enabling the hollow structure to be seen on the X-ray.

Oh, by the way, the barium tasted terrible.

Next, they captured a series of X-rays to visualize the pathway the barium took to get to my stomach.

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Start to finish; the test was about an hour long.

After seeing the results, my doctor and speech therapist confirmed I was having problems swallowing thin liquids. Because of this, I have an increased risk of catching pneumonia. The suggested plan of action is to thicken my liquids to a nectar consistency. Also, substitute thin liquids with thicker liquid choices such as cream soups for plain broths. And when taking medication, crush pills and mix them with applesauce or pudding.

I bought the suggested thickening agents and I’m supposed to use it with all liquids.

Has anyone else experienced swallowing problems?

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51

Pride Wins Again

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After my husband paid the bill, the receptionist slowly ushered him to the side and whispered, “It’s getting hard for us to pick her up. We need you to stay if she comes back.”

If?

I have talked about going to the hair salon a couple of times. I consider it one of my few real treats. The problem is, lately the hairdressers have to help me out a whole lot. I need help getting in and out of the chairs for washing. And drying my hair is the worst part. I am already weak and once I get under the hair dryer it zaps all of my remaining energy right out of me.

But nothing compared to what happened during my last visit. I asked the hairdresser to stop so I could use the restroom. I probably needed someone to close the door, help me pull my clothes down and physically get me to the toilet.

But I didn’t say anything. Nothing.

I just rolled to the restroom alone. Was it my pride or did I really think I could do it myself? I’m not sure. But as the urgency to micturate increased, I began to panic. Once I entered the restroom, I realized I should have asked for help. Then before I could make it to the toilet, I fell on the floor and urine spilled from me. It was all over the restroom floor then migrated into the hairdresser area.

I was so embarrassed!

Two women from the salon had to come into the restroom and help me.

After that incident, I really understand their reservations about having me as a customer. I can be a handful. And I must give it to them; they went above and beyond. Often, it’s like they were nurses to me. For this reason, when they voiced their concerns, I could not complain. So when they asked my husband to remain in the salon for the next time I come, I was just ecstatic that I could even return.

I guess MS won this round but I’m not giving up. I just hope my husband starts staying in the salon while I get my hair done. This is huge because I know he doesn’t want to stay there for hours at a time. I’m there for 2 to 4 hours, depending on what I’m getting done. Hell, I don’t want to stay that long either!

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52

Consumed By Deficiencies

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“If you change the way you look at things, the things you look at change.” – Wayne Dyer

I have a standing appointment with my psychiatrist every other Friday. The sessions last for 50 minutes. Just long enough for me to get my point across and work through life’s dilemmas.

I have been seeing her for a while now, so she has a pretty good direct grasp of who I am and what I’ve been through. So you can imagine how baffled I was when she said, “Nicole, you are obsessed with your deficits.”

She thinks I identify too much with multiple sclerosis. But let me tell you, I can’t imagine not identifying with it. It has changed the course of my life. I’m just trying to follow its lead.

I see her for adaption problems. She is teaching me coping skills to facilitate my abilities at dealing with what I can no longer do. Like not being able to walk or drive.

She’s not a big fan of my blogging either. Because I’m constantly highlighting my problems, she believes the blogging is keeping my deficits in the forefront. That got me thinking; maybe this blog does cause me to focus even more on what I cannot do. I hope not, because I really love blogging.

My conundrum is that I disagree with her about my blogging but I still enjoy our sessions. She really does help me through the tough times. She pushes me to believe that I’m more than just Nicole with MS. I’m Nicole whom is an avid reader. I am a regular at my local library. They know me by name. What can I say? I’m a nerd at heart.

I also study Spanish, horseback ride and go to the gym twice a week. She made me realize that all of these things are important and they are bigger than my MS. Because of that, I will continue to see her, even though she is not too crazy about this blog.

23

Parade Days

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Last week I was in the hospital for two days after having an adverse reaction to my latest prescription. The symptoms were so bad that the doctors first thought I had a stroke. It wasn’t until all of my test came back negative that we linked my sudden change in health to the new medication.

Before this happened, I was excited because it is Carnival time. I have been going to Mardi Gras parades in New Orleans, Louisiana for over 30 years. But this year just wasn’t the same. I can’t put my finger on it but I didn’t have as much fun as usual. My guess is, since I really hate being in a wheelchair, being at a parade in a wheelchair just wasn’t enjoyable. I don’t like when people stand in front of me blocking my view. It’s funny because everyone is nice until the floats start throwing trinkets. Then it’s every man for himself. Also, bladder issues can cause a real headache especially since the portable restrooms provided by the city are not wheelchair accessible.

But my best guess at the source of my newfound melancholy feelings toward attending parades is the fact that I have been extremely tired lately. I am so weak these days that it’s hard to enjoy myself at events, especially ones that take so much energy. Parade days are all-day affairs that can last 5 hours or more. And there are usually multiple parades. The recent one I attended was actually three different parades. This is something I did all the time, but nowadays it’s just too much for me. And being only one day removed from the hospital didn’t help either.

After I made it home from the parades, I decided I would not attend anymore because they are just too taxing on me.

Moments later, following my declaration, I saw a picture posted by Steve Gleason* at a Mardi Gras parade. He helped me put my overreaction into perspective. So now I have decided that I won’t totally stop attending Mardi Gras parades. I’ll just adjust how long and how many I attend.

Happy Mardi Gras Everyone!

*(Steve Gleason is a former New Orleans Saints football player who is now battling ALS – Lou Gehrig’s disease)

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Putting a Rest to MS Myths

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Content provided by: Black Health Matters

Medical discoveries happen so fast that it’s easy to understand how some people don’t have time to stay on top of the latest news and might still believe outdated myths and misconceptions about multiple sclerosis. We debunk five of the most common MS myths.

Myth 1: People with multiple sclerosis shouldn’t exercise.

There was a time when everyone—experts and people with MS alike—believed physical activity would make the disease worse. Doctors advised against an active lifestyle and families kept their loved ones sheltered indoors. Now we know better. In fact, research shows it’s actually better for you to keep it moving. Being active may even ease some symptoms of MS and help you stay mobile longer than if you’re largely sedentary. Choose activities you enjoy and do them most days of the week.

Myth 2: Women with MS can’t (or shouldn’t) get pregnant.

Three times more women develop MS than men, most often during their childbearing years. Imagine how unfair it would be to say to these women that they should pack up their ovaries and go home. Experts say women with multiple sclerosis can get pregnant and might even find some of their MS symptoms disappear during pregnancy. Singer Tamia says this is what she experienced while she was pregnant. If you want to have a baby, but you’ve been diagnosed with MS, know this: There is no research that links a mom’s MS with a negative outcome for the baby. Just talk with your doctor about your medications and the possibility of a relapse within three months after childbirth.

Myth 3: Multiple sclerosis is contagious.

Some people are under the misconception that MS is catching, like that stomach virus that laid your entire family low last Thanksgiving. But scientists have tried—and failed—to transmit the disease in the lab to research animals, so the likelihood of it spreading in your home or community is pretty remote.

Myth 4: Multiple sclerosis doesn’t cause pain.

Though there are still some health-care providers who don’t include pain on the list of MS symptoms, people who have it will tell you different. And if you need the science to back up the folks who should know, here it is: Research published a year ago in the Journal of Neurology found that people with multiple sclerosis can suffer with long-term chronic pain.

Myth 5: Multiple sclerosis always causes permanent disability.

It’s difficult to predict the degree of disability MS will cause for any one person. Today’s medications slow disease progression for many sufferers. Add a variety of mobility aids and physical therapy to your arsenal, and the words “permanent disability” might have to be banned from your vocabulary. You may learn what many others with this disease know: Sometimes you’ll might need your walker or cane, and some days you can dance circles around your non-MS friends.

Content provided by: Black Health Matters

17

When My Will Is Weak

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It does not matter how slow you go so long as you do not stop. –Confucius

MS is like a thief in the night, stealing the fortitude of its victims. It especially takes advantage of those who have given up or can’t muster the strength to fight anymore.

For me, everyday is a battle with MS. My struggle is not only a movement in opposition to a debilitating disease but also a fight for a fulfilling quality of life. I use every available tool and possible weapon in my personal war against MS. Medicine, food, exercise, and spiritual guidance all play an important role. Most of the time this arsenal is very effective and shields my body from the impinging effects of the disease. But every now and then I am sucker punched with a new symptom that knocks me for a loop. When that happens I try to gather my thoughts and seek counsel from my life advisors, which include family, friends, doctors and my spouse. When my decision-making skills are weakened by sudden medicinal changes these people are able to recognize that I am at my most vulnerable and provide much needed support.

New symptoms steer me towards worse case scenarios and distract me from solutions. I become despondent, believing that my latest flare-up will take over my life. Whenever I am in this situation, MS becomes my personal devil. It spits fire at my soul, burning away pieces of my spirit. First, my confidence and ambitions are damaged. Then my faith and hope are tested until my essence is destroyed to the point that my former self is no longer living. I become a different person who struggles to establish a new purpose. Flashbacks to the individual I used to be haunts my contemporary identity and grow to be the foundation of depression. Malevolent thoughts rage an internal battle that deliberately attempts to control my existence. Suddenly my inward struggles become just as stark as the outward ones.

Every outing is a circus where I am the sideshow freak on display for everyone’s amusement. My life reflects a car wreck that is highlighted by twisted metal and broken parts. As people pass they look and discretely stare, hoping to get a glimpse of my damaged remains. My mind goes a thousand miles an hour, with only the most awful circumstances passing through every few minutes. My entire being is pushed to the edge where I start to conceive alternatives to continuing in my living hell.

At this point I am usually at the end of my rope. Without intervention I am apt to make horrible and regrettable decisions. I have been known to change medicines, begin fad diets and try to isolate myself from the outside world. My support group has been my savior in this situation by not allowing me to become out of touch. I am blessed to have such a compassionate collection of people in my life. They don’t pity me they help me. They stand strong for me when I cannot. They fight for me when my will is weak.

Originally appeared on MultipleSclerosis.net