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.

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!

 

June 18, 2013: Depression Reigns

Depression has reigned for two days. It’s so difficult to be somewhere where I just do not and cannot fit in no matter how hard I try. I must find a way to get away from the empire at which I am employed.

I’m an afterthought in our section –when I’m thought of at all. People think I’m joking when I say I feel like the red-headed stepchild of my agency section. I’m dead serious.

I’m so tired of fighting everything every day. I fight with myself, I fight myasthenia gravis symptoms, I fight everyone (except my family who has seen and heard me at my worst) regarding my illness everyday, … Myasthenia gravis is an “invisible” illness. It bites! No one gets how this thing feels from one minute or hour to the next. I don’t care that I have a fake smile plastered on to please the masses and to avoid the, “Smile, it’s not that bad” comments when I don’t smile. Yes, you idiots, it IS that bad sometimes. Deal with it! Try struggling to lift your legs to get in your car because your leg muscles are very weak. Try trudging across a parking lot to walk into a building on a hot and humid day feeling as if your legs, which are lugging around invisible 100-pound weights, are going to collapse underneath you at any moment. Try looking at yourself in the mirror at the end of the day and looking at a face that looks as if it has been the victim of a stroke because the muscles have lost their tone during the day. Try reading something while seeing double or experiencing extremely blurry vision. Try talking loud enough for people to hear you, but you can’t because your diaphragm and/or throat muscles are too weak to help you project your voice.

Try holding a pen or pencil to write only to discover that you can’t grasp it. Try pulling your slacks up in the morning and struggling to curve your hands enough to be able to grasp and pull them up. Same with putting on socks or shoes! I drop things often because my muscles just give out in my hands and arms. Don’t tell me, “It’s good exercise” for me to have to stop and bend over to pick up whatever I dropped. That is not the damn point. It’s frustrating, plus I don’t have a lot of money to replace crap I break. Just because I’ve gained 45 pounds while being on this stupid medicine called prednisone doesn’t mean I’m lazy and need to exercise or that I need to go on one of the many diet fads going around. If I could exercise the way I used to or even half the way I used to, I would. Four miles of walking every other day and weight lifting the days in between—it was awesome! Exercise these days makes my muscle weakness worse. Read about and talk to other people who deal with this disease you ignorant, stupid, assuming idiots!!!!!

I’m trying so hard to keep it together. I’m trying to be optimistic about future treatments—even possibly chemo. It’s very difficult given the one treatment I was so excited about in February nearly killed me. Chemo itself could kill me—if the crap I’m fighting every day these days doesn’t kill me first.

I need a break, desperately. It’s hard to take a break when you don’t have leave available to use for vacation time thanks to having to use it for sick leave as you accrue it.

Tomorrow’s the first day of our annual functional exercise at work. God help me maintain my composure!

June 13, 2013: Wall of Weakness Punched ME in the Face!

Got up for the day feeling kind of ok. By the time I got dressed, ate breakfast, and about to put on my shoes to walk out the door, sudden overall weakness hit me along with double vision. Seriously???!!! Why???? This is so frustrating! I am so tired of dealing with this. It is not fair. Now I’m fighting guilt for not being able to go to the office today. I have so much work to finish. Even if I could work from home, I wouldn’t be able to do anything thanks to double vision.

Talk to me or I’m going to punch you in the face!

No, I  didn’t threaten the Austin nurse. but I did call again on June 10 to insist on her reading the results to me. She did. The tests all reconfirmed myasthenia gravis. Now how hard was that? Seriously! Ok so what next?

The San Antonio doctor recommends I try CellCept, which I’m unclear on whether or not it’s a form of chemotherapy or if it’s another type of immune-supressant. My Austin neuro had mentioned it before but had also highly recommended trying Imuran, which I know is a chemo drug. I’m not too thrilled to try either one knowing what a lot of people experience on them. My poor system is waaaaay sensitive. I can handle hair loss, but I can’t handle digestive upset–especially of the nausea kind. I don’t look good in green.  I’ve had a challenging enough time with Mestinon and prednisone creating nausea. I should buy stock in ginger ale and the ginger grower’s association (is there one of those?).

I asked the nurse if I could pick up a copy of my reports, she hesitated but agreed to leave copies of my labs up front for me to pick up the next day. I picked them up this morning. Now, I have to wait until I can see my Austin neuro to make an official decision on what to do next. I know it’s ultimately my decision. At this point, I have no idea what decision I will make.