What a wonderful week of family, friends and the foes of MS. Yes, wonderful even with the nagging MS stuff going on: The emotional roller coaster, the fatigue, the foggy brain. Not to mention clumsy foot, balance issues leading to a broken toe. But despite all the MS foes, this was a grand Holiday.
While I love Santa and the stocking he provides, it's often the intangible gifts that mean so much during the holidays. The gift of life, of friends, of family. Even if our family is just one other person, or that most of our friends are acquaintances on Twitter, we do have a family.
My morning chat from Christmas Morning:
Yesterday included some great food with me grilling a wonderful piece of beef tenderloin from Sprouts market. Love their meat! Grandma made all the fixings and family helped with the dishes. Girl with MS had to take several rests during the day. By now my young nephews understand when "Auntie Nonnie" needs an MS break.
We did it! The emotional roller coaster has subdued. Gifts exchanged. Tears of joy and love shared. Frustrations as well, but all in all a Cherry Merry Christmas.
Just another haircut?
by Jennifer Digmann
A British survey conducted by the hair care line Tresemme found that the average woman spends a staggering $50,000 on her hair over her lifetime. In addition, each year we women spend an average of $800 between shampoos and conditioners, styling products and haircuts. Plus, those of us who color our hair tack on another $330 a year.
Outrageous, isn’t it?
What’s worse is that after I read this statistic, it simply served as a reminder that I needed to make a hairappointment. After all it has been almost 6 weeks since I went short with my hair. Okay, maybe it is not as short as some people expected, but it is short to me.
Since being diagnosed with Multiple Sclerosis more than 16 years ago, my hair length is just another causality of this progressive disease as I’ve had longer hair (middle of my back) most of my life. My hair being cut short is kind of like my driving, working and walking –none of which I am able to do anymore.
Please understand that I haven’t just given in to the disease. I have had oodles of physical therapy to maintain as much as possible, but it gradually has taken these things from me.
Because my arms and hands don’t function as well as they used to, I have made concessions to the disease. It started with simplifying my hairstyle (keep in mind I am a child of the lots-of-Aqua-Net-big-hair 80s, so you can imagine what I mean). Then Ibegan to ask my husband, Dan, for help. And while he could blow dry and flat-iron my hair with the best of stylists in town, how fair was that daily demand to him? So I have learned to accept and appreciate my natural curls. But it was not until the haircut I received 6 weeks ago that I felt totally confident with my “do,” and with doing it myself.
My stylist, Elizabeth, put all of the pieces together in one hairstyle. A little shorter than shoulder length, minimal styling products, wash-and-go curly hair. And you know what? I love my cut! Plus, I have been getting lots ofcompliments on my new shorter style. Yeah, sure that wasn’t why I did it but going shorter and being complimented on my hairdo is a nice perk.
More than anything, cutting my hair has allowed me to regain control over something that my body was letting MS take away. I’ve regained control over my hairstyle, which I like. Bonus, it boosted my confidence, which I love.
First dinner party of the season. Not a big one but enough to make this Girl with MS think about a lot of things, mainly how to manage this illness during the next 24 hours...
House is decorated thanks to mom and her elves. We took it slow but spent the last few days decorating and cleaning. My office is usually set up at this table but now it's time to put it away. Oh bummer! Hate when I have to put my office away. (we are only talking about a laptop here...keeping life simple with MS)
Tonight I'm making a slight twist to my grilled salmon. The salmon was caught fresh in Canada by a good friend. Usually I make a bit of a mayo, worcestshire, herb sauce for the top. Today I went gonzo with the herbs in the garden and made a sorrel pesto with parsley, chives, basil, arugula, garlic chives, pine nuts and olive oil.
I just puréed it in the Cuisinart adding olive oil as needed. Remember to taste along the way. The salt, Saltverk, was a gift from a friend and is from Iceland. It's sea salt flakes and is the only salt produced 100% geothermal energy. Love this stuff! Like snow flakes of mineral yumminess.
We had a pretty hefty piece of fresh salmon. I covered it in the pesto and let it settle for awhile. We knew it was too much for tonight's dinner but left over salmon makes great patties, salad and dip.
Remember to let the fish rest for a bit after taking it off. I don't follow any rules here but prefer to tent with foil and just let everything settle into place. Its important to warm the platter so that the cooked fish isn't stuck on a cold surface right away.
All I had to do was grill the meat. Mom made the green beans, mushrooms and bacon mixture; the citrus wild rice pilaf; and the brownie tart with anglaise sauce. I forgot to get a picture of the tart but I had two servings and I rarely eat dessert!
Well, anyways, it was a lovely evening. I managed my MS during the day, kept activities low so my energy would maintain. I left the party early as I needed to go to bed but that's OK. I slept very well. And actually woke up feeling a bit stronger than yesterday. Since when does waking up after a party feel better than before?
Maybe I'm actually learning how to do this. How to live my life with this disease as it progressively attempts to steal it away from me.
|STATS, Pasadena where Christmas never dies...|
Love the juxtaposition of the local hoods around town. No two alike!
How did it get to be December? November flew by as usual. As did the rest of the Fall. One of my favorite times of year, the Fall. But then I pretty much love every time of year.
|Joshua Tree, CA by Caroline Craven|
The holidays can be tricky with MS. The emotional roller coaster, the disease itself, the losses that result. MS is not for sissies. Throw in the holidays and one could have TNT on their hands.
It's easy to get wrapped up in the festivities, duties or even the burdens of the holidays: you're feeling good, things are rolling along and you're getting it done!
Until one day you wake up and, well, start freaking out. "How am I going to get it all done?" The money, the chores, the obligations. It can all be so everwhelming. And throw in an unreliable and random disease like MS and the simplest thing such as getting out of bed can be impossible.
MS is often called the invisible disease. Folks think you look great so you must be and feel great. Nothing could be further from the truth.
I had a lovely Thanksgiving this year but my MS threw me for a couple of loops. The emotional roller coaster seemed unending. Up one morning, down the next. And I mean really down. I don't like feeling that down. Weakness and pain wrecked havoc on my body as well. Hit with a 24 hour bug, the flu like symptoms lasted days and sucked the life out of me. Energy gone, balance gone, I envied the elderly man leaning on his wheeled walker while I held up the wall of the church with my back.
"How am I going to get back to the car?" Weak from the flu, weak from MS, my legs were trembling. I had no cane. No walker. No friend to hold onto. Stealing the last bits of energy, I rallied forth and made it to the car to wait for the family to drive us home. All the time thinking, how am I going to get everything done for holidays when I can barely walk a block to the car?
Oh how I despise this part of the disease: being forced to slow down despite what you may want to do. No one likes to be dictated. MS is a disease that will teach you to live under a dictatorship. But like any life we live by our choices...so what is it going to be?
Here's my game plan for surviving this years MS dictatorship:
- Listen to my body
- Listen to my MS
- Make Priotities
- Set limits and boundaries
- Be flexible with expectations
- Be compassionate and easy on Me
Today I'm taking charge of my own MS dictatorship for the next month. One day at a time.
The holidays will arrive whether I'm well or sick, so time to do this right and get on with life. Time to manage my MS like an iPhone battery: to conserve and preserve energy to maintain quality of life with MS.
Off to get the day started and take my own advice!
Let's do this!