Live Wednesday Night! "Humor Me" on mslolradio

Friends,

Be sure to check out tomorrow's blogtalkradio program "Humor Me: Finding the funny while living with MS" on mslolradio hosted by our friend Amy Gurowitz. I am not sure about you, but I definitely use humor as a coping mechanism for living with MS. Amy's guests do too so be sure to listen in for a few chuckles. Oh! One more thing. I'll be on the show too!

Please follow this link for more information MSLOLRADIO "Humor Me: Finding the funny while living with MS. You are invited to call into the show to share your funny stories and laughs.

See you there!

Be well,
Christie

When is it Time to Get the Blue Placard?

I knew it was only a matter of time before I made a very important decision. To do the handicap placard or to not do the handicap placard. That is the question. I have been wrangling with this one for some time, always coming up with reasons as to why my perfectly (dis)abled body does not need to be rescued by a privileged parking space. That’s how I see it.  Here’s why.

First, my symptoms are never that bad. At least that’s what I’ve always told myself. I can park in any spot in the parking lot of Bed, Bath and Beyond and capably walk to the front door. This always leads me to my second point, which is that I really do not want to take a handicapped spot away from someone who needs it more than me. How on earth would I be able to live with myself if I drove my car atop the asphalt spot painted with the universal disabled symbol and actually took it from someone else? I am not sure I could live with the guilt of stealing a spot when I feel perfectly fine. This line of thinking always ends with the forever silent, unmentionable realization that I am a disabled person who might need assistance one day too. 

Nope. Not this MSer. My third point I always think is a strong one. I need the exercise. Walking. Walking is good exercise. The farther out I park the car, the more exercise I will get. I often reason with myself. I do not need to shrink my already limited exercise routine by decreasing the steps per minute that would come from parking so close to the entrance of the mall. Ha, ha! Good one.

Lastly, the place where I need assistance the most is at work yet I adamantly tell myself that I am not ready to come out with my diagnosis to my office mates. Parking in the handicapped area will clearly force me out of the MS closet. I know what you’re thinking, ‘o readers of mine. How much of a secret could it really be if I write publicly on this blog? Minor detail. I remain inflexible. I cannot get a handicapped placard. Everyone will notice me stepping out of my car parked in the blue zone right in front of the office building entrance. It will be so immediately obvious. There is no way to avoid it. Everyone knows what kind of car I drive and they do not have a clue that I live with MS. I always ask myself questions. How is this going to work? Am I ready for this or should I dream up a story that I am recovering from a very serious bike accident? People will believe me, right? Yes I realize that keeping up with a story like this will be difficult and has the potential of getting completely out of hand as I will be forced to describe every elaborate detail of my crash. Besides, I can’t wear a fake cast forever. On the other hand, parking is so limited at my office that many of us are forced to park on a dauntingly steep hill that is an exercise routine all in itself. 300+ steps from the office front door to the top. I counted one day. I still conclude and tell myself: more points to add to my third reason above if I don’t get the placard, right?

This all changed with my recent relapse. Just last week my MS took me by surprise and rewarded me with new numbness, from my waist down. Not full numbness but enough to give the impression that I should probably stop drinking at noon. This is when I decided it was time. I wrote it down on my task list: fill out DMV form for disability placard.  I will let you know how my first parking experience goes when my pretty blue placard arrives in the mail. Stay tuned.

In the meanwhile, I am sure many of you have had similar experiences. I would love to hear from you, to hear your story. How was your experience in getting the disability placard?

P.S. If you live in California, you can fill out the “Application for Disabled Person Placard or Plates” through this link:  Application for Placard.

Best always,

Christie

Don’t Miss the Party!

I recently read an article about chronic pain and social isolation and was reminded that living with chronic pain, while it does stink, should not have to interfere with having fun. For me personally, I get my energy from being around my peeps so I don’t like to miss out on the festivities just because I don’t feel good. Sure, I have good days and bad days and I am aware of my limitations but mustering up some energy to spend time with my loved ones always makes me feel a wee bit better.  And, besides, the party is a great distraction from my chronic pain. Jeanne Faulkner of Quality Health put together some good tips on staying socially connected while living with chronic pain [read more here].

Be well and don’t miss the party!

Best always,

Christie

More Beating the Heat Tips

A few weeks ago I posted some great tips in beating the heat, courtesy of our friends at Pacific Coast Chapter of the MS Society, and recently learned about more ideas as some MSers deal with heat waves and extreme humidity this week.

Beat the Heat Tip #8: don’t want to swim at pool parties? Dip your legs in the water instead. I am not comfortable donning a bathing suit in public so I opt for sitting on the ledge and resting my legs in the water. It feels so good, especially when it’s 100 degrees outside! Now if I can just get the cannon bombers to stop splashing so much and reduce my anxiety about getting pushed in so my hearing aids don’t get wet, I’d really feel nice. Yelling “I’ve got $10,000 worth of equipment in my ears, don’t you dare push me in!” always seems to dissuade the soon-to-be pranksters.

Beat the Heat Tip #9: @LickingtheHoney mentioned my blog post recently on Twitter (thanks!). Here’s what she wrote: “@lesionjournals Love keeping cool tips. UK climate makes this easier, but I find I can't beat wet hair.” Great idea, thanks!

What are some of your tips in beating the heat? Let us know! 

Best always and stay cool! 

Christie

Will my medication turn my hair green?

Me, grateful that my hair is not green

My hairdresser told me last night while I was getting my hair done that she thinks my medication has affected my hair color (yes, I dye my hair but I really like to think of it as an artful expression because I really only have chunky caramel highlights). This she told me as she peeked under the shiny foil folded in-between my hair follicles, the hair color burning my scalp. When I heard this I thought to myself, “Shit. Does that mean my hair is turning green? This will not bode well at the office on Monday. Who’s really going to take me seriously with my new look as I present to my VP the financial impacts of the latest company strategy? Will he focus on my bright green hair or on the ROI?” I had to ask, “My hair’s not turning green is it?” She calmed me and replied, “No, it’s just taking longer”. Well that was a relief to hear but begged the question, should I be more worried about my hair turning green or the fact that my cheeks turned lobster red from sitting under the dryers for too long? I think we MSers are not meant to be cooked quite like that. 

Best always,

Christie

How to Beat the Heat

Great tips for beating the heat came through on Tweeter this past week, from our friends at the Pacific Coast Chapter of the MS Society. And, they reminded us “…heat generally produces only temporarily worsening of symptoms and does not cause more disease activity or damage to nerves”. The tweets below are great reminders on how to stay cool. Thanks for sending these out mspsc and stay cool everyone!

Top 7 Tips to Beat the Heat:

• Beat the Heat Tip #1: Drink plenty of fluids. Water is the fluid of choice. Avoid caffeine as this acts as a diuretic.

• Beat the Heat Tip #2: There are a number of cooling products including vests, neck wraps and bandanas available for purchase.

• Beat the Heat Tip #3: Wear lightweight, loose-fitting and breathe-able clothing. Wearing light colors can also help.

• Beat the Heat Tip #4: Make sure to do your outdoor activities during the cooler times of the day, usually early morning or evening. 

• Beat the Heat Tip #5: Try an aquatics class. Check out some options in your neighborhood. 

• Beat the Heat Tip #6: Don’t want to spend the money on a cooling product? Try a wet towel stored in the refrigerator or cooler.

• Beat the Heat Tip #7: Try pre-cooling. Soak in a tub of cool water for 20-30 minutes before heading outside.

(slapping forehead) I suppose drinking gallons of coffee and wearing flannel yesterday was not a good plan.

P.S. most electric companies offer discount programs for MSers. After all, AC is a blessing during these fiery months! I just downloaded an application from SDG&E’s website: sdge medbaseline program.

P.P.S. Did you know? The cost of an air conditioner is tax-deductible with a document from your physician. Thanks for letting us know mspsc. I did not know this and gaining this knowledge right now was perfect timing – we need a new AC!

Watch my new video on WEGOHealth.tv!

I recently participated in a new project with WEGO Health called WEGOHealth.tv – it’s a different kind of online video platform dedicated to presenting the authentic voice of the online community by sharing advice, information and wisdom from Health Activists. 

The videos on WEGOHealth.tv are all about getting at the heart of the conversations we have here, putting our mission into motion and brining our passion to life.  

I invite you to take a few minutes to watch my video and share it with others in the community: http://bit.ly/mCsZ9b. We had fun filming and you're sure to enjoy it. 

I’d love to hear what you think! Is there another video we should make about questions we’re seeing in the community?

Best always,

Christie