Last Day of Myasthenia Gravis Awareness Month

Below, is a revised quote posted by a fellow myasthenic who sums up this month and our daily struggle:

Today is the last day of MG awareness month.

However it doesn’t end for those with MG.

I live daily with a shield around me.
One that I keep up so I appear normal.
One I let down for only a few to see the true life I live.

You may see pictures of me working out.
But, you don’t see the affects on me when I am alone.

You may think I am ignoring you when I don’t say hi as you walk by.
But, I couldn’t see you because my vision was so blurry.

You may see me shopping.
But, what you don’t know is without the cart I would fall down.

When you see me walking like a penguin I am not being funny.
My legs aren’t working well so I waddle like a penguin.

When I hand my daughter a bottle to open it’s not to show her strength.
It shows my weakness.

I may not look on the outside like a monster lives inside me. But spend a day inside me and you will scream to get out.

MYASTHENIA GRAVIS is a monster. But we will fight and win.

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Update on My Mellow Mood

I survived the day without the desire to punch someone in the face! I even made it to the grocery store, which is a major accomplishment even on my really “good” days.

I had my one and only laugh-out-loud moment today—in the grocery store—thanks to this sweet little boy (~5 or 6 years old) and his mother checking out ahead of me. The little guy was full of energy and the cashier told his mother that she wished she had half of that boy’s energy. The mom and several of us in line chuckled. The little boy stopped fidgeting for a moment, looked at the cashier, and with the widest grin and brightest face said, “You know why I have so much energy? I have ADD!” His mom laughed first and the rest of us joined in. The cashier said, “You be proud of that and enjoy the energy!” What a moment. Kudos to his mom for buying very healthy foods for him.

Off to a shower and bed now.

My mood today: Mellow

But then, I’ve yet to venture out the front door onto the psychotic streets of Austin. I’d love to make it through the day without the desire of punching someone in the face.

I’m a bit weak and tired this morning but I take comfort in the feeling of mellowness and wading in fond memories of a trip to what was obviously my ancestral home: Bekal, India in the state of Kerala. Oh how I’d love to be there right now on the beach staring out at the raging Arabian Sea with not a care in the world. Sigh…

In the meantime, I’ll wait to hear from my neurologist, hopefully on Monday or Tuesday, with the latest lab reports and fantasize, plot, and plan a miraculous transition to a state of good health and making a living doing what my heart desires to do.Image

Blood work and peeing in a cup

Visited with my primary neurologist today. He’s concerned about my reoccurring fevers. Will have more blood work in the morning and I have the wonderful privilege of peeing in a cup—always so much fun! Not. If I have an infection, it will delay the start of chemo treatment. He calls it “low-dose” chemo. I call it chemo. I’m just not buying this concept of “low dose.” I’ve talked to several  myasthenics who’ve been on one or both of the meds being considered for me (Imuran and CellCept) and it seemed to be 50-50 those who had typical chemo reactions and those who did not. I’d love to be in the latter category. I’m not so concerned about potential hair loss as much as I am about gastrointestinal issues. My GI tract has always been victim #1 and quite fussy. I’ll know more in a few days when the next round of medical fun shall commence.

I was pretty much a limp rag doll in the doctor’s office this morning. Doctor commented that he admired my fight. Even though I went to work for a bit today, I sure did not feel like fighting—or punching anyone in the face. I felt like crawling under my desk and curling up into the tightest ball to get away from everything.

I’ll now curl up in a ball in bed now and go to my happy place — sleep.

Talking Behind My Back While I Suffer

I’ve been homebound today thanks to excessive weakness and a fever. Why fever? I have no idea. Just one of those things I suppose. I slept most of the day and I’m ready for more sleep.

I called my neurologist’s office today to find out what the holdup is regarding a new prescription for me. It appears my two neurologists are not agreeing with each other’s ideas of treatment for me. Lovely. Personally, I’m not in full agreement with either of them! I’ll be seeing my primary neurologist Thursday morning for an in-person discussion of the matter.

My mother said I need to find a third opinion. That would be fine if I had funds for a third opinion. I found an Ayurvedic center that mentioned treatment for myasthenia gravis. I sent them an e-mail to see what they’re really about. We’ll see if they respond.

Lead-heavy arms and legs are not for me. I need my ability to kick and punch. Seriously.

Rough afternoon

Although most of my days these days start out on the weak and wobbly side, some days continue in that state, while others, like today, take a sudden nosedive. Started feeling extra weakness take over around 2 today. Also felt a fever creeping up on me. Fun! Left work a bit early–trying to not feel guilty about it. At home now and barely able to lift my arms. Legs are starting to go the way of my arms now. The evening mouth droop has also set in earlier than usual. Looks like an early evening for me.

MG, if I had the strength, I’d punch you in the face. I can’t even kick you in the face right now! 😦

 

June 21, 2013: The Demotion?

Well, apparently I missed the memo that I was demoted to be a coworker’s personal secretary.

I normally keep my headphones on during the day at work, especially when I really need to focus on whatever I’m working on. I guess this was the wrong day to use my blocking-out-the-world-around-me technique. Said coworker walked around the corner to her cube (she has to pass me to get to her cube) and raised her voice at me asking if her phone had been ringing. Since when was I supposed to be monitoring her phone?

Two more steps and a glance at her phone would have answered her question if someone had called her. I did not hear her phone or anyone else’s phone since I obviously had my headphones on blocking out such nonsense.

I pulled the ear buds from my ears, tossed them on my desk, and responded that I had no idea since I had my ear buds in and that I was not paying attention. Mind you all, I had a surge of rage greater than the energy that could be released from Mt. Vesuvius! Am I supposed to be listening for everyone’s phones now? Really? And people wonder why I’m not happy at my job. I’m constantly having to deal with other people’s weirdness and ridiculous demands.

I placed my ear buds back in my ears, cranked the music even louder, and painfully pounded on my poor keyboard to keep from turning around and punching someone in the face. This sudden surge in anger did not help my MG. I was a super weak mess by the end of the day.

Still full of rage when I left, the tears came on the way home. The rage had to be released in some way. That’s how it happened. I’m not a teary person. I guess I am now because the tears continued after I made it home and until I finally went to bed at the lovely hour of 8 p.m. That’s ridiculously early for me. I started questioning my worth again and wondering why I keep finding myself in situations where people feel they can bitch at and boss me. I’m not going to let this happen again. If I get fired for yelling at someone for being an ass toward me some day, so be it. I’m done!