I can and I will. Watch me.

These words capture very well my MS state of mind. Determined not to let my diagnosis get in the way of doing the things that I love, I think this mantra is perfect for 2013 (and beyond!). Sure I have bad days but Multiple Sclerosis will not stop me. I’ll just take a nap and wake up to a new moment, a new day and do the things I enjoy.

Watch me. 

Photo source: Los Angeles Chinatown Firecracker Run, Facebook, February 2013.

It’s exhausting being a secret agent

I remember sitting at piano lessons when I was a kid, announcing, “I want to be a CIA agent” right before kicking into a Bach Minuet. My piano teacher said, “Oh Christie. That’s all very dangerous!” At the time I was watching a lot of James Bond movies with my dad and I believed this would be a great way to make a living when I got older. I could save the world while leaping in the air, hanging out of spiffy gadget filled cars driving at high velocity speeds and swinging out of tall buildings capturing all the bad guys.

Well, turns out I did grow up to be a secret agent. It is not nearly as exciting as I dreamed about and it is utterly exhausting.

Allow me to explain.

By day I am a number cruncher for a major retailer and, by night, I am someone who lives with MS. I am not completely out at the office with my diagnosis and the only ones I’ve told include my boss and two trusted colleagues. Yet the espionage work has really started getting to me. The discrete phone calls, rendezvous in the middle of the day and disguising my disabilities. I even took a phone call in my car the other day, to chat it up with an MS buddy. My car has tinted windows so I was able to stay undercover, if even for fifteen minutes. It seems that I am constantly managing The Secret, to ensure my office mates do not find out about my health status.

At what point should I blow my cover?

I believe that I haven’t blown my cover yet. Here’s another great example of some stellar spy work. Last month I encountered a colleague in the hallway while trying to quietly leave the office for one of my monthly Friday afternoon Tysabri appointments. I am pretty sure I was wearing the standard issued dark sunglasses. Okay, okay. I realize that this is not very discreet, navigating through a cubicle filled office space while wearing sunglasses but even spies make mistakes. As we passed each other, my colleague said to me, “Lucky.” Success! I tricked him into thinking I was leaving the office for the day, for some fun filled weekend activity like snow boarding in the mountains or driving out to Vegas or camping by the ocean or jetting off to San Francisco. Little did he know I was on my way to the hospital to sit in an infusion chair for two hours while the big T flowed through my veins.

To the best of my knowledge, my MS remains an in tact secret and no one at the office knows. An incredible feat since I was diagnosed over two years ago! This means that I am either doing an amazing job blending in and the government should seriously consider hiring me for some spy work or I am playing a dangerous game with my psyche.

And, like all good secret agents, I must not panic.

Difficult, I know, especially when you get vertigo and double vision during a business meeting. This happened one afternoon, during a meeting with about ten analysts and statisticians. I told myself, as I began seeing about twenty calculators spin around the conference room, “Just blend in, like any good spy, while they talk about their findings and insights and pray that they do not ask you any direct questions.” And I did. I just sat there, calmly, and listened to everyone, nodding my head once in a while in agreement as I waited for the spinning to stop. “Whew!” It finally did pass, twenty calculators reduced to ten, and I managed not to attract any attention.

You can see why I am started to get tired of all this, right? I often come home to utter exhaustion, plop on the couch and just chill. I am convinced that this under cover work is the culprit of my fatigue. It is often on said couch that I ask myself, “At what point do I just blow my cover, let “them” catch me and relax about who I am? I am a number crunching photographer who loves riding her bicycle really, really fast and happens to live with MS?”

I am sure I am not the only one who struggles with being a secret agent. How about you? Are you out at work with your MS diagnosis? Any good stories you want to share? I would love to hear from you.

Hope you’re well and feeling okay.

Best,

Agent C.

P.S. And, if you are a co-worker of mine, reading these words, do swing by my cubicle one day. We need to talk.

It’s always good to be reminded that stressing out is not good for your MS

Whether you are newly diagnosed or have been living with MS for a while, the article I linked below is a good read on the impact of stress on MS. There’s a great list, towards the end, that features ways to reduce stress and ultimately help us feel better. That’s the hope anyway!

True…

• Stress overheats the body, which then may aggravate our MS symptoms

• Stress may also reduce the effects of our MS meds

• Advice? Make stress reduction a priority in your life

I know, I know. Nothing new here but we all know that stress is bad and this article serves as a great reminder.

You can read the article here: stressing-out-ms

Hope everyone is chillin’

Best,

C.

Source: everydayhealth.com, “Stressing Out May Worsen MS Symptoms” Karen Appold, 2/14/13

Has MS ever taken over your refrigerator?

During my two years on Copaxone, Multiple Sclerosis took over my fridge. I couldn’t get out the milk for my coffee without being reminded that I live with this complicated neurological disease. Every time I opened the fridge, I saw that blue box filled with fresh needles. Ugh.

The dreaded nightly routine of administering Copaxone would flush my thoughts as I reached for the salad dressing, grabbed mustard for my sandwich or checked to see if there was anything decent to nibble on. Those Copaxone syringes stared at me even if I tried to tuck them away on the bottom shelf of the door, seemingly out of site. Yet whenever I opened the fridge, the lot of them appeared to yell out “HI! WE’RE HERE TO REMIND YOU THAT YOU LIVE WITH MS. NOW GRAB A SYRINGE, PACK UP THE AUTOJECT AND GET ON WITH IT.”

Sure, MS took over my refrigerator. At times, it seems it has taken over my life. 

C.

New Rule. If you live with MS you should be exempt from bike crashes.

That’s not asking for a lot, is it? After all, we MSers go through so much. Several rides in the MRI tube, really scary spinal taps, daily injections of synthetic drugs to reduce MS flare ups, site reactions to said daily injections, dozens of blood tests, EEG’s, monthly doses of intense infusion therapy with a skinny needle that sometimes really hurts, and not to mention the countless and often unpredictable MS symptoms. Numbness, blindness, tingling, cognitive dysfunction, balance issues, vertigo, tremors, nerve pain, fatigue, and so much more.

October 2012. Sprained ankle while walking around on rain soaked sidewalks in bike cleats! 

January 2013. Minor crash while making a sharp turn on gravel. Major fail!

So, Universe? All I am saying is give MSers a break and let us ride our bikes without incident.

Thank you.

Your friend,
Christie

Niggling about MS weight loss, a recent obsession

I have become completely obsessed with my weight lately. Every time someone mentions to me “you are so skinny,” which, P.S., is so not true, I feel completely insecure, embarrassed and become slightly paranoid really because their comments usually follow with “not that you were heavy before…” Wait, what? These types of chats typically fuel my neurosis about my MS weight. I know it shouldn’t but I really cannot stop myself. I niggle and niggle about my weight, pre and post weight-loss.

It starts with…

Are people commenting on my weight loss because my business casual dress pants are falling off? Well, they are a little loose around the waist and in the butt. Sometimes I feel like one of those people in the weight loss ads, when they pull out their waistband to show off how much weight they’ve dropped. But maybe my loose pants are simply due to a bad dry cleaning experience. Yes, that’s it. My dry cleaners probably stretched out my pants. I have real facts to back this up people. There was this one time when I tried out a new dry cleaning place (read BIG mistake) and they totally stretched out my pants. Bastards. They didn’t even reimburse me after I complained.

The niggling continues with…

Did I look overweight to everyone before? What’s the deal with this? Why didn’t anyone tell me? Why don’t people ever say, “have you put on weight? Everything ok?” Did I grow to such a size that no one felt comfortable enough to tell me? Good grief. I thought people really cared about me, about my well-being! Fuggedaboutit. There is no way I would ever tell someone “you look great with all that extra weight, “ so why do I care so much that folks aren’t telling me?

So the niggling manifests…

Should I be worried that I am losing so much weight, too much weight? How much more can I go? What if this has nothing at all to do with my MS? Maybe something even more serious is happening to me. Naturally, I’ve been googling ‘weight loss and MS’ on our worldwide web yet don’t find many instances of this being a symptom for fellow MSers. Weight gain usually accompanies an MS diagnosis due to lack of activity which is completely normal because when you don’t feel good you don’t feel like doing much of anything except laying down to sleep. Am I right or am I right?

I jog down memory lane to my first year of my diagnosis. Well it’s not really a jog because this MSer does not run, ever. Not even in case of emergency. I’m more of a walk-briskly-kind-of-person. So, I walk briskly down memory lane and seem to remember gaining a little bit of weight back then. But really, who knows? I cannot remember a thing these days due to my brain fog constantly disrupting my memory bank. And it’s not like anyone would tell me I’ve put on weight so I really don’t have much to work with.

Not ever convinced that my weight loss is due to my MS, I continue searching the web for clues as to what’s going on. Google reveals other diseases that are correlated to weight loss. One in particular scares the shit out of me even though the practical Dutch in me realizes that I am not being very practical at all. I see cancer on my screen. It’s at this point I usually tell my sweetie that I am very concerned about my weight loss.

Me to My Sweetie: Should I be worried about my weight loss?

My Sweetie: No, not at all.

Me: Well I have lost like 20 pounds and everyone keeps telling me that I’m sooo little. My pants are falling off and this is really getting embarrassing at the office.

My Sweetie: So you’ve lost weight. I should be so lucky. We can go shopping to get you new pants.

Me: Maybe. I just bought a bunch of pants though and really don’t want to spend any more money. I’d rather spend money on fun stuff.

My Sweetie: I don’t know what to tell you. So we won’t go. But your pants are a little loose. You might want to wear a belt.

Me: That’s a really good idea. But I don’t have a belt. I’ll have to buy one of those too.

My Sweetie: okay..but I thought we weren’t going shopping?

Me: I’m not sure. But seriously, should I be worried about my weight loss?

My Sweetie: No, not at all. You’ve been going to the doctor’s and they aren’t concerned. They would tell you if there was something to worry about.

Me: I know, I know. You’re so right. You’re always right.

We usually go around like this every other day. I am also known to trigger these types conversations after hopping off the scale, which tells me that I weigh XXX lbs. Ha, ha! You thought I was going to tell you how much I weigh? Not a chance. I can tell you that it’s the same weight as yesterday. Or, did that needle dropped down a notch. I can’t tell because I’m near sighted and I’ve got optic neuritis in my left eye, which makes things look a bit wonky. So really, who the hell knows what’s going on?

I will tell you this. According to the NMSS, weight loss and weight gain seem to be related to MS. I am sure my weight loss has nothing at all to do with healthier eating habits, riding my bicycle really, really fast as often as possible, and consuming less alcohol.

How about you guys? Anyone out there experiencing weight loss or weight gain? I would love to hear from you and to hear about your stories.

Hope you’re well.

Best always,

Christie