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26

A Crabby Night

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“Our greatest glory is not in never failing, but in rising up every time we fail”. – Ralph Waldo Emerson

Last weekend was our 11th wedding anniversary as well as my 39th birthday. One big ball of milestones headed directly towards me. The end of an era. My 30s to be exact while also the celebration of a wonderful partnership with my husband.

The plan was to head downtown. Stay overnight at a hotel and get something to eat. Everything was going great and then came dinner.

Have you ever eaten snow crabs?

Have you seen them before?

Well I have, but sometimes I have selective memory. I forgot how hard it is to eat them. First off, I could not crack the crab. So instead, I pulled each leg off causing juice to fly all over me. Keep in mind that I have problems with fine motor skills. It’s hard for me to button my shirts and hold things. But for some reason I thought I could conquer these crabs.

After I failed at my attempt to eat the crabs, I saw that my table was a mess and I was covered from head to toe with crabmeat. But I was still determined to have a nice dinner. Thank goodness we were at a buffet, so I did have other choices of food. To help out our waitress, I cleaned my immediate surroundings then I politely picked up another plate and started over with a different entrée. So the dinner was not a total loss.

FYI, I did leave a nice tip.

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13

Alive And Well

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“Every man has his secret sorrows which the world knows not; and often times we call a man cold when he is only sad.” ― Henry Wadsworth Longfellow

I visit my occupational therapist (OT) weekly. She’s there to help me develop skills that will enable me to work or simply complete my activities of daily living, such as dressing and grooming. At this point we have become moderately acquainted with each other. I am a fairly outgoing person, when in the mood, and this is the part of me that she sees the most. We were talking the other day and I mentioned that I cry quite a lot.

“What!” She exclaimed. She seemed astounded.

It was nice to hear that she had a completely different perspective of me, one that seems to be closer to the original Nicole.

I like people to know that I do have a life outside of MS. I started this blog in order to highlight and find out whom that person was. It seems like somehow along the way I’ve steered off-road. I’m embarrassed to admit how much time I spend dwelling on things I can no longer do. Or how often I still cry alone.

But apparently, according to my OT, not enough to tear apart my intact personality. So my new goal is to keep that part of me alive and well.

17

Do Nothing

I got a canibus lollipop.

“It’s bad to not do anything for 8 hours but it is sad to not be able to do anything for 8 hours.”

Someone once told me, “Hunger hurts but starving is worse”. So I try everyday to “feed my mind” with some type of activity. I do this because I realize a little activity is better than no activity.

Losing my ability to reflect and imagine is my biggest fear, so keeping my mind active is a top priority for me.

One of my faults is that I probably spend too much time inside the house. I’m also too depended on my husband to find me things to do. So to counteract this, I am always searching for new intellectual pursuits. Sometimes it’s substantial, like writing a 500-word post or speaking at an event. But most times it’s small things like sitting outside watching people walk by. With me, fatigue plays a huge factor so for that particular day; people watching may be all I’m able to do.

I use to be such an active person, so I had to convince myself that physical exercise isn’t the only way to obtain mental simulation. At one point in my life, I would see people sitting around and think they were lazy. Now I know, just because someone appears to be doing nothing doesn’t mean they are actually doing nothing. For me, I use that time to reflect and clear my mind, which lets me sort out future moves. I’m able to find the right paths and create new opportunities for potential endeavors. I call it, actively doing nothing.

So if you ever find yourself being bored or to tired for physical activity, take my advice and do nothing. Because sometimes doing nothing can bring you more to do.

20

Cry Baby

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The soul would have no rainbow had the eyes no tears. ~John Vance Cheney

The last couple of days have been painstakingly rough. Even though I had my depression medicine changed, I still find myself crying all the time. Which is embarrassing. I hate crying in front of my husband.

The funny thing is, nothing has really changed. I haven’t lost any new functionality. But still the crying remains.

One time between sobs, I tried desperately to explain to my husband what was wrong but I had no answers. It’s not only frustrating for me but for him too. This worries me because I believe there’s only so much of this he is going to take. (Probably not true but that’s how I think sometimes.)

Shortly after I tried to explain how I felt, I excused myself to the ladies room. Minutes later, I reemerged with the answer.

My cycle was on!

I was so excited because I realized I wasn’t crazy, just emotional due to hormones. Sometimes I forget that I am an ovulating 39-year-old woman. And yes, it is typical for me to have such a sporadic emotional ride. The doctor has even offered to give me medication for it. Maybe I should take her up on the offer.

Problem solved, until a week later and I had yet another crying spell.

Oh no!

I guess crying comes with the (MS) territory.

23

Jokes On Me

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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.

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.

45

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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