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!
Progression of a Thanksgiving, family close. Been a few years since we've all been together and it was a beautiful day. MS has its benefits despite its annoyances. One for me is getting closer to family. I have a rocking family and my two nephews give me a sense of life not experienced before.
While it's not all rosy, life with MS brings benefits. Yesterday I was a guest on a new radio show, Life's Journey's with Tim Manson, the 7 Minute Motivator. Tim is an executive coach, has MS and has found solace through horses his entire life. Sound familiar? But man can he can motivate! I was moved to tears seconds before Going on air.
I come in about 15 minutes into the show but don't miss the beginning. Tim is amazing!
While preparing for this radio show and because it is Thanksgiving here in the USA, my attention toward gratitude has been overwhelming. My new mantra:
Go to sleep with a thankful attitude and you will wake with gratitude.
And then, after break, he brings me back on and honestly, I felt like Catniss being introduced as the Girl on Fire in the Hunger Games. Or the prize filly at some famous Thororoughbred sale. Goosebumps. Pride, but just enough. I'm sure I was sitting an inch taller when he was done.
Before the show I spent the morning doing a little chatting about being thankful. I got the body moving just a bit and the energy in a good rhythm for the day.
So thankful. Much gratitude.
Amazing what one person can bring to one life. My limited time with Tim was motivating. I can see why he is successful as the 7-Minute Motivator!
Click here to learn more about Tim Manson's services, as a motivational speaker, his business, Innovative Horozons and his amazing EAGLES program with horses and executive leadership.
So much to be thankful for this year! But now it's Time to get back to the kitchen, prepare for friends and family and all the good stuff coming up in the next 36 hours.
Happy Thanksgiving Everyone!
Here is a quick list I wrote for my thankfulness with MS. More to come...
MS Thanksgivings and Blessings. A start...
Learning to stop and smell the roses
Working for self. Creating flexible life.
Redefining role as career woman to that of freelance designer, marketer, photographer and easy going gal.
Appreciate going from Uptight to more chill.
Thankful for becoming a life coach and helping others with MS.
Learning to not let stress take over my life
Not stressing the little things
Learning to set boundaries. Most difficult me thinks.
Spending time with family. Adjustment but worth it.
Thankful that I lived life to the fullest until I got sick
Thankful that I can be flexible with my bucket list to work with my MS
Thankful for the double blind USC study.
Thankful for friends and family.
Thankful to social media ms family. The only ones who really get it.
Thankful for the research and information about MS from all types of traditional and alternative approaches.
Thankful that I wake up.
Thankful for my community, neighborhood, friends.
Thankful that I've learned to feel more complete by being able to do a little freelance work, volunteer time and me time
Thankful for realizing the importance of Me time!
So thankful for renewing my relationship with God. Strengthening it.
After twelve years of this disease it still amazes me how the emotional roller coaster can come full swing without a moments notice. Ever get that feeling? There are triggers for sure: fatigue, general MS, menstration, not taking care of ourselves, etc.
But then bring on the external factors. Family members who are rude or inconsiderate, friends of the same. Work situations. Not that they necessarily intend to be mean but with MS sometimes the smallest trigger can feel like an avalanche.
I recently felt this way during my birthday. While my friends were there in full force, new and old, the family chose to spend the week without me. No celebration at all. Not even an offer when they returned. Not even an offer for dinner. A card was mailed but never received.
While being 47 is not a mile marker so to speak, every day is a mile marker with MS. It was very hurtful to be ignored at a time that should be about family. It was a bit predicted as last year I had to set some boundaries and limits for my MS and it upset the family. I was actually told that my boundaries didn't matter and they further hoped that I had a miserable birthday next year because of my actions to protect myself. Pretty harsh words and sad part is I don't even think they remember saying it. Words really can be the mist violent weapon. I am guilty of snapping myself. And something I am always working on. Being kinder with my words.
While I had a nice day it was a worst day. A terrible week as my moods fell dark. Too dark. I scared even myself.
It's times like these that I fall into my recluse mode. I write, paint, draw, doodle, watch falling leaves and sleep. Depression brings sleep and boy could I feel it. I also fought a virus and then got bit bit by a dog and on antibiotics. Guess I just was scheduled for a down week all the way around.
But Today was a good day for falling leaves and the sunset helped improve my mood.
I didn't like being on mood stabilizers. I felt too numb but this emotional roller coaster is a disaster. I have woken up crying every day for a week. This is not like me. But it so like my MS.
Time for a change!
Doing some meditation and positive visualization this morning. Some major mood altering!
Remembering what it was like to be riding that Tennessee walker. Visualizing the physical rhythm of riding helps me calm down inside.
Also, to pull myself out of a slump, is to think of positive times, feelings and emotions. And remembering to be loving and kind to myself even if others are not.
Gentle, kind, watery, soft, flowing...I shall be as kind to myself today as it takes to put color to paper. I can do this!
While this is a group for moms with MS it was great to see a supporting husband in the mix. Two women were recently diagnosed, within the past couple of months. It's been twelve years since my diagnosis. Another lady was diagnosed eighteen years ago. The years make quite a difference from that initial shock to eventual comfort and ability to laugh at this disease. The years have also provided a plethora of new medicines and knowledge.
Driving past the turn off Dodger Stadium. Funny how I get anxious just looking at this photo. Country lanes are so nice...
MS is challenging enough. Throw in children and that's a whole different story. Its one thing when a person with MS can take a "me" day. Or just some "me" time. But MSrs with children don't have that option. Children are demanding no matter how perfect they can be. Well once a month these moms can get together to vent, cry, laugh and be with someone who truly understands.
The group was founded by Kim Zolotar and AnaMarie Strand a couple of years ago. Both with MS, both with different symptoms. Typical for MSrs as we know.
True inspiration. Moms with MS plus me. I have nephews and can relate to 1/10th of what these women have gone or are going through. Feeling very blessed to have heard their stories.
The first part of the session was interesting question and feedback throughout the group. Especially the newly diagnosed which is always great for us old timers to hear. To remind us what it felt like in the beginning. And to be able to provide support, information and help.
The challenges of motherhood were apparent. The discussion lively and filled with support.
Then I came on board with my workshop on "Managing MS like Managing an iPhone Battery". A casual discussion on tools we can use to preserve our delicate Ms batteries. These ladies had some great I put!
I got a lot of great feedback from the ladies. One of the best ideas was to remember we need to not only have Plan A but Plan B and Plan C with MS being so random and all. Now trying to explain that to a four year old, well, that's just difficult.
We also discussed the importance of taking Disease Modifying Drugs (DMDs) such as Copaxone, and how it's helpful and healing for us to know that we are doing something for our disease. Copaxone is a popular shot used for MS. I was on it when first diagnosed and I know that feeling. I was eager for any help. Give me any opportunity to not have to go through this hell again.
It's not only drugs and medicine that can make us feel like we're doing the right thing. Massage. Nutrition. Taking time to smell the roses. Reducing life stressors. Retiring. Learning to live on a shoestring. Many, many life choices affect our health. This group gets that concept and it was refreshing to hear their ideas, solutions and issues.
Moms with MS is a support group that meets the second Tuesday each month from 12:00pm - 2:00pm in Rancho Cucamonga, California. Some folks drive as far as Victorville to attend. And I can see why. I walked away feeling inspired and wanting a similar group within my community.
And as if that wasn't enough. Feeling inspired, grateful and now a "Motivational Muse", my friend and I went to explore some of Rancho Cucamonga.
She took me to one of her favorites, the Wine Tailor. If you are into wine, I highly recommend it. The patio is just lovely and I believe that have music and events at night. We grabbed some cheese and fruit from the market next door and enjoyed some lovely wines and great discussion.
Time flew by as it does when life is good. I had an event in the evening and needed to return and my lovely friend drove me back to the homestead under a pretty amazing sky.
When I hit the pillow that night I was equally both physically and mentally exhausted. Not to the point that I would be wiped out the next day but sleep came deep and long. Lingering in my dreams in the morning reminded me of how nice that feeling is, to be truly tired in so many aspects. Especially with MS.
It came up during our workshop. How often the body is failing us and the mind can't stop. Or vice versa. And how difficult it is to get a good night sleep. If we could just get a good night sleep....