Monthly Archives: March 2013

Illness and The Arts: “Parallel Lives”

Okay so I’m not a laugh out loud kinda girl. But this one did it to me!

img035

How these two women carry this 2 hour play entirely ALONE, is beyond me. Their comedic chemistry was amazing. The women I’m referring to are actresses Samantha Beedle and Jennifer Starr Foley, and the play was “Parallel Lives”, by Mo Gaffney and Kathy Najimy .

 In the opening scene,  what could be funnier than two female angels deciding how procreation will work? Who would DO it they ask; the male or the female? Well, duh…alphabetical order! F comes before M, so BAM! the females get it. The guys might suffer from low self esteem now so we’ve gotta balance this out somehow. They’re gonna feel left out of this huge, glorious, wonderful life bringing event. To balance it better, the angels thought, OH…we’ll just make it messy, and add some pain so the guys won’t feel like they’re missing out. Now, they had to decide HOW this would actually happen. They started with the little human growing inside the female’s body for a human YEAR. They bantered back and forth, settling on 9 months. Now that gestation was settled; how will it get OUT? A brilliant idea hits them; a SMALL PORTAL!

Still worried about the guys self esteem, the angels agreed to dump LOTS, and LOTS, and LOTS of ego on them. LOTS! Whew… they are done.

Two Millennia Later

Angel 1 was asked: So…How’s that procreation thing working out?

Answer: its working great, the EGO thing was genius.

Angel 2 was asked: How are the females feelin that small portal idea?

Answer: Oh! They are PISSSSED!

In every scene the play portrays “parallels” that exist in life. How those parallels are intertwined, and what makes them work. I could never do it justice; pen and paper won’t do. These ladies served it well…they BROUGHT IT and then some!

Please enjoy the original actresses, Kathy and Mo’s Angel skit:

The other part of the evening was two things for me; educational and inspirational.

Educational: I learned that some people are just assholes when it comes to “not seeing” a disability. The seats were very tightly placed making it difficult to move through. A gentleman saw me with my cane, stepped aside and said, “After you”. Before I could move through the small space, a nearby wench darted between us. This surely would have caused me to fall if it weren’t for the stellar athlete that I am!

I also learned, that I am “okay” with my friends. They walk slower, just for me, even when it’s cold as shit outside. They carry my stuff when my hands are too full because of my cane. They even go with me to the ladies room and ask, “Are you gonna need any help in there?” Next time I’ll have to remember to STOP DRINKING liquids hours before the event. I can always re-hydrate later. And oh yeah! I learned to call ahead next time to find out about those THIRTY EIGHT steps from the street to the theater. You mean there is an elevator! SWEET! Only, I should have parked around back.

Inspirational: I got out of the house, and was, excuse me…CUTE! Both of those things felt great. Laughter if good for EVERYthing! Depression, back ache, low self esteem, weight loss, weight gain, you name it! Watching these two phenomenal comedians was also good for my “game”. My next performance, I’m going head first. No holding back!

So, I’m going to end this post with my favorite line from the play, (drunken Hank Williams voice) “Well hey there sweetmeat, you look ver-ah, ver-ah pretty tonight. When you gunna git rid o’ that bossman o’ yors  and marry me??”

Your Thoughts:

Please share. What art form most inspires you? What does it inspire you to do? Tell us.

Leave a comment

Filed under Ilness and The Arts

I’m a Neurologists Nightmare!

For 10 years now, I’ve seen two Neurologists; one in the mid-west, one on the east coast. The Neurologists near me just don’t know as much about MS. Here’s the problem: both of my current Neurologists are at major teaching hospitals, and both are heads of Neurology at those hospitals. I am nowhere near a teaching hospital where I live now. This takes me from the expertise of an “Academic MS Specialist” who see’s thousands of MS patients; to a “Non-Academic MS Specialist” who see’s only hundred’s. Which one would you rather have?

large_lecture2

I want my Neurologist to respect everything that I bring to the table. Be able and willing to explain everything so that I understand it, and then…back the hell up! Give me the time and space to do my own research, considering my options.

Maybe I’m a bit of a nightmare, but I’ve got a GREAT personality!

On my first visit to see my “new” Neurologist, I thought he was nice enough, friendly even; that’s a plus. Middle aged, and, this means I could have him for years. The down side of having Academic Specialist is that they are usually on the downside of their career. My mid-west Neurologist has been practicing medicine for 50 years! About half way through our interview, I mean… conversation; when things were going well, I ask the new guy, “Are you married, do you have children? How many? Do you live in the area?”

Hold on Buddy, keep your pants on! My husband’s in the room! I explained quickly that I’m not being fresh. I want to know these things because I need to know if you’re vested in this hospital, this area, and this life before I commit to you. I’ve been with one Neurologist for 10 years and the other for 15. THEY are not going anywhere; are you? His answers to all of my questions were satisfactory and now it gets sexy. They all want to get you naked as soon as they can. That’s our brain of course, so I agreed to the obligatory MRI.  I probably should have been more coy; you know, played hard to get. The problem is, when you’ve been doing this as long as I have, you lose all inhibition.

I listened to his “elevator spiel” on all the new medicines, and even said I would take one. I was looking at the floor, shaking my head NO, while my mouth was saying, “Yes”. He looked at my husband and said, “She’s a real handful…huh?” WHAT! Because I’m not jumping into bed with you? The medicine I had agreed to take was Ampyra; the walking pill. Ampyra is the only medication to date indicated as a treatment to improve walking in patients with MS. It arrived and sat on the kitchen counter for weeks. Like sex…he still had to wait until I was ready.  I was scheduled to see him in three months with a report. To my surprise, he called beforehand. He wanted to talk about my MRI, and how the new medicine was going. “Um…it’s not”, I say.

What I needed, I had gotten. A little space, and time to consider my options. A phone call and a little more coaxing at this point were perfect. It was like getting a box of chocolates! My other Neurologist never gave me chocolates.

After waiting a couple more weeks, I gave in and took the pill.

I can be a nightmare; but I’ve got a great personality!

Your Thoughts:

Have you ever felt like you knew more than your Neurologist?

Have you had a Neurologist tell you something about MS that you simply KNOW to not be true?

4 Comments

Filed under MS and Oral Medication, MS Drugs, Neurology

“WAIT!! Can I talk?”…my MRI

Fotosearch_k2478801

I’m on the table, all strapped down and the conversation goes:

Nurse: “What kind of music would you like to listen to?”

Me:“None, I’m okay.”

As they begin to roll me in I say

Me: “WAIT!! Can I talk while I’m in here?”

Nurse: “Whaaat?”

Me: “I have to rehearse my script!”

Nurse (puzzled): “Only if you’re talking to us, and that’s when we ask you something.” Walks away with a huff!

So FINE! I say my script to myself, but I’m sure when I got to the part where I, snap my head and put my hand on my hip…the MRI picture of my brain will be a liiiitle bit fuzzy :/

I’ve had so many MRI’s of my brain I just go to sleep, but not today! The play is in just 3 days.

Oh, the MRI? Not a big deal. I’ve seen a “new” neurologist, and of course he wants new pictures. I haven’t decided to give him the job yet. He’s still in the probationary stage, but he’s got potential. He’s pushing all new meds. THAT takes me some time to research and consider, so, he’ll just have to be patient. Right now…I’ve got a PLAY TO DO!!

CLICK HERE for the MUST SEE Video: Understanding your MRI

How many MRI’s have you had?

Were you diagnosed without an MRI?

COMMENTS:I’d love to know your thoughts.

2 Comments

Filed under Diagnosing MS, MS Drugs

Today, my MS won

I’m Sorry Kate;Vday5 today, my MS won.

Dress rehearsal for the play I’m performing in, “The Vagina Monologues” was today. I was STOKED! I’ve been practicing my script everywhere! I’ve recited it for my beautician, my doctor, and the lady at the dry cleaners. I’m taking it to the GROCERY STORE next! I am reeeea-dy!

I get to rehearsal and…You Want Me To WHAT? You want me to DANCE! Ugh…yeah. I know I told you I would when you called me on Tuesday, but not THIS! I don’t know WHAT the hell I was thinking.

When I walk into rehearsal there are women shaking their bottoms all around me; from Emma who is 9, to Angela who is 69! They’re learning and teaching the dance to each other, and having a blast.

“Break the Chain” dance video:

http://www.youtube.com/watch?v=fL5N8rSy4CU

Now, what Kate asked me to do on Tuesday was this: will you dance just some? You can join in with us on the “cha, cha, cha”, and then do your own thing in place while we do the rest. When I saw all of the activity that would be going on around me, I freaked. Just standing there, I would stick out so much. I might as well be “pole dancing” in the middle of the floor!

I want to say I’m sorry Kate, because I:

  1.  sat around and pouted
  2.  started a coupe with 2 of the other girls to revolt and not dance, and then…
  3.  (this is the big one) answered you with a “hell no” when you simply asked me, “do you think you can get Kevin to help with this part?”

I don’t even think I said it (the hell no) loud, but, the room F-R-O-Z-E! I looked at the 3 little girls in the room with a, gasp; and YES, they had heard me! They were frozen little statues, staring right at me! Then one of them said, “Oh shoot! I’ve heard worst then that! and with that, the dancing and the chatter commenced. All except Kate’s face had gone back to normal. It was stuck on, shock, frustration and disappointment.

You see, Kate is our director; she is nothing but, talented, sweet, and kind. In return, she deserves nothing but the same; and on my good days, that’s all I offer. THIS was a very bad day; I took it out on Kate and, I’m sorry.

This was one of those times when having an “invisible” disease is problematic. When we started rehearsals several weeks ago, I was just coming off of using my cane. Kate saw very little of it; and probably doesn’t notice my extremely careful gait. How could she? I work very hard to look normal; like everyone else. In the beginning, I always did my monologue from a chair… no one else did. Now, I stand to do my monologue TOO. What Kate doesn’t know, is that a strong wind would knock me over, or…make me dizzy. More realistically; a sharp turn, a dark room, an uneven floor, or…lots of women dancing very close and all around me. That would do the trick. It wasn’t until I got home that I realized, what had thrown me into such a foul mood. Not Kate or the dancers. It was me being blindsided once again, by my MS with its very subtle nudge. “Remember me. All the pretending in the universe and you won’t be able to do THIS; or even, play it off! You lost your cool, the whole room saw it, and froze.” Today…my MS won.

4 Comments

Filed under Mental Well-Being, MS and Domestic Violence, Stress Management

My Zen Colonoscopy and Endoscopy

I had to have a colonoscopy and endoscopy because I have Iron Deficiency Anemia. The concern is that, I might be bleeding inside? I entered into my “Zen place” as if on automatic pilot. I could afford to be upset by NOTHING.

Black-woman-meditating1

The “prep”, which everyone says is so awful, was a piece of cake! I had to drink a Gatorade/ Miralax mixture and a tiny bottle of stuff that tasted like Sprite. All laxatives. Then, just stay near the bathroom, and wait. I don’t know what all the fuss is about.

The actual procedure was even easier. Because my husband and I were running a little late, I entered into my “Zen place”, as if on automatic pilot. I could afford to be upset by NOTHING. At times of potential stress, I am quite good at this. I keep my mind in this moment only. Not 5 minutes behind, nor 5 minutes ahead. I focus on my breathing, taking very slow, deep breaths. I speak very little, and when I do, it’s much slower and even in a slightly different tone of voice. Deeper. At times like this, my “Zen place” is a great buffer against stress. It keeps me calm.

We get to the hospital and the staff is amazing. They begin to prep me immediately.

Nurse 1: Do you have any religious or cultural beliefs that might make this procedure difficult for you?

Me: Well…um, it’s not religious, but, it may make the procedure a little difficult for me. I am depressed and having some separation issues as well, so I need to have my husband with me when I go to sleep, and when I wake up.

Nurse 1: Oh don’t you worry! When you wake up, I’m going to go right out and call him in for you.

Me: No…you don’t understand (sniff, sniff) when I go under and when I wake up, I need him to be (eyes fill now-voice cracks) RIGHT HERE! (Hand on bed-rail indicating…right here!) and tears begin to fall.

Nurse 1 and Nurse 2: Oh weeee understand, and don’t you worry! One of them summons Kevin, who is standing near by, to come to the bed. We’ll have him right here now, and when you wake! The last thing we want is for your blood pressure to go up, so that’s NO problem!

Great…I’m calm and back in my “Zen place”. Nooow, they can start the I.V. to put me to sleep.

I look at Kevin standing by me and say, “Honey, this stuff is not working. I’m not EVEN sleepy!” He says, “That’s because it’s over!

I don’t know what all the fuss is about!

To learn more about relaxation techniques for stress relief, click this link. There are many ways to find your “Zen place”; which is best for you?

Leave comments please. I’d love for you to share how you respond to stress, and what keeps you calm.

 

4 Comments

Filed under Long Loving Marriages, Mental Well-Being, Mind-Body Connection, MS and Depression, MS and Iron Deficiency Anemia, Stress Management