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Join us every Thursday for a topic and discussion.
#takethatMS
Multiple Sclerosis
Thursday
Have had an amazing week with my nephews. It was super hot Monday and the MS was screaming bad. Then it cooled down just a bit but enough to make a huge difference.
We made it to hogsmeade and played quidditch with Harry Potter.
Then we danced with minions.
All in all a pretty darn good day.
I had packed two cooling vests and lots of cooling aids but did ok without them.
The next day we pained ceramics to use as decorations for a fence we have. Grandpa went with us and had a great time.
Tuesday
Just said goodbye to a friend. She's nearing the end of her life here on earth. Wow. Truly can't imagine what she's going through or what she wants to hear from me. Love her and inspired by her but not sure I actually relayed that in our conversation.
Spoke at local city council meeting regarding our trails council. As president and trails advocate I feel it my responsibility to promote the trails and ask for continued help in keeping our trails maintained and safe.
Odd week in many ways. MS was really crappy for a bit but I really do blame my diet. Really? Frito lay jalepeno cheese dip and ships. And beer. wow. That's enough to send anyone into emergency. But sometimes it's what the "doctor" orders. And sometimes we need and want to listen and be carefree and live it up for once. We pay enough heed to rules when we live with MS. Sometimes we just want to say "Wahooooo". Life is short. Live it.
Friday
Priceless memories today. Took my dad fly fishing to the Los Angeles River #LARiver down in Atwater Village near Glendale. 15 minutes from the front door.
He used my tenkara and I used my 5 wt. Nothing was caught but it was beautiful.
And then we topped it off with a trip to In and Out Burgers - An LA classic.
Monday
Ok. That was just an amazing weekend. Went to Refugio state park, north of Santa Barbara to camp and fish with a good friend. The weather was looking good all week. About 70f on the coast. And yes, it was gorgeous!
I set up my trusty mountain hard wear tent then the MSR tent my friend rented from adventure 16 in Westwood.
Refugio is lined with palm trees. The Pacific Ocean is just beyond the trees. We planned to cook on an open fire and boy did we.
First we had several salads. Then dry rubbed pan seared steak. Then s'mores. Then more salads. Then mussels with wine and bread. Ok, I was spoiled rotten!
And then this...the Pacific Ocean. I've never lived more then a couple hours form the Pacific and now I know why. Love it with all my heart. Or at least a big part of my heart.
I decided to wet my line and rigged up my 8wt. I chose a red fly pattern and headed out toward the tide pools. I fished the trough just south of the pools and didn't take long before I scored us some scales!
Otherwise known as a Califrnia a Perch, this little guy could've easily been made into dinner but we had enough food and he was sent back to his waters. He was hefty, a good size fr a couple of filets. It was my first fish on a fly in the surf. My adrenaline was goofily amped after I caught him. My hands were shaking so much it was pretty funny. But the barbless hook slipped right out of his lip and he swam away.
Camping is rejuvenating for me. A chance to be in nature, feeling the rhythm of life and enjoying all one can before heading back to the reality of working for a living.
Friday
Woot! Love Fridays. Oh heck I love every day. Yesterday was awesome. Really awesome!
Got spoiled by Melina Healer and took a bit of time to appreciate my life and what I have.
And then went and saw a friend and got my hair done. Yay! It needed it.
Then went and had lunch with another friend and worked an proct together for the La Canada Flintridgre Tournament of Roses and our self built rose float. More on this later.
Listening to a meditation app called Breathe. And I really like it! I plugged in how I was feeling and it shot me a couple of recommended meditations. Wow. So cool!
Thursday
And this happened: Many steps for this girlwithms! Two walks and several errands made for a productive day.
Thursday
Sunday
Had an amazing time yesterday at the Race to Erase MS Forum. Learned a bit, met new folks and connected with old friends.
To find a cure for multiple sclerosis we must do the following:
Stop the progression
Rebuild the myelination
Create a vaccine.
Well, if anyone can do it this panel of neurologists seemed to fit the bill.
I finally met Hennie from Race to Erase MS. And first time meeting Jennifer Ettinger from FitYourStyle.com.
Some key take aways from the forum:
1. Salt is not good for MS. Well, we knew that but OK.
2. Diet should be low in fat and processed food. OK, nothing new here, but good to know.
3. Smoking is not good for any person with MS and should be avoided.
The Key Message for everyone?
"Having a belief your life has a purpose" has a profound affect on your health
@RacetoEraseMS #EraseMS
Thursday
Had a rock n roll good time yesterday at Huntington Gardens in Pasadena. Met a Client and walked and worked in beauty. Feeling blessed with Southern California!
My favorite was California Gold! Poppies, orange trees and an oak grove. Can't get more California than this picture.
Just a sampling of the beauty we saw on our walk. The gardens are great for waking or wheelchairs. There's plenty of shade to find and lots of sun so depending upon the weather you will find so,eating that works with you.
Tuesday
Restoring and rejuvenating. Yep. Took a few days and recharged the old battery. Been working with folks and rebuilding lives after multiple sclerosis. Lots to learn with this disease. Lots to learn and lots to do. These are some of the biggest concerns folks have with ms and life plans. What are some of you issues?
Here's a day when I felt awesome. You know that feeling? When everything aligns and you feel like the rockstar? This is the feeling we are working on having every day. Let chat and work through these issues. Life is more than MS.
Sunday
MS weighing you down? It sure got a hold of me last week. Talk about fighting a relapse. Wowza. I am Tired from the fight.
How did I survive? By saying NO and setting boundaries. Sometimes the Only way to a healthy life is to be selfish and protect yourself. Just say no thank you. Seriously. Even fun stuff. Put it all on hold until that battery power bar is back up to sufficient. Or incase of the spoon theory, when one has more spoons to use. Personally I like the battery bar and power mode to visualize my health and energy.
It wasn't easy, saying no. Turned down friends and family. Turned down work and fun. But, I was able to do a little each day and that was OK with me. Just 1-2 hours max on the computer per day and the rest of my time spent restoring and rejuvenating.
I did nothing yesterday except go to farmers market.
I literally sat on the couch and rested. Or for me took an absolutely lazy day. How can one not feel lazy when slacking in the couch by the fire reading and playing games?
Hardest part about fatigue and multiple sclerosis is the guilt. At least for me it's the guilt of not being productive. Even though I went to the market, did a little bit of client work and some house work, feeling like a slacker. Hate this feeling and don't deserve it. But it's a tough one to work out of jones system.
Saturday
And it's raining! Anyone in Southern California knows how special this is to us.
I've been dealing with a lot of pain lately. Just not getting past it. Legs on fire. Body on fire. And dealing with a lot of ms crap. Numbness, tingling, pain, fatigue, vision problems and more. Body is inflamed and not happy. I taking certain measures to be healthier but could do more.
Feeling like some juicing and cooling foods might be necessary. Vitamins for sure and where are those mega vitamin D I got from the doctor? Sometimes keeping track of things with ms is the toughest of all tasks.
But I have found a couple of hacks to make taking vitamins and other things easy to keep track of and maintain.
One of my ms life hacks is the Mango app. That's right, it's named after a big juicy mango. So it makes me hungry every time I open it. Hungry in a good way like that moment when the mangos sweetness dances on your tongue and sticky juices trickle down your chin.
This handy little app is great at keeping track of prescriptions in and other ms issues that mar arise.
I use it for medicine and for moods. I Love the mood log.
Mango is actually working on expanding their app to include vitamins and supplements and other goodies we may want to take to alleviate our symptoms.
What are some of the perks you'd like to see in a wellness app?
I spend quite a bit of time in their wellness blog as well at http://mangohealth.com.
Friday
Oh. Wow. Had face cupping for the first time yesterday. Talk about getting my health swagger back!
And more acupuncture. Man, I tell ya, life is better with Melina Healer in my life. I've been blessed with many healers throughout the years, a good team of wellness experts to make living with multiple sclerosis better. And this one just tops the cake! Well the whole team tops the cake. Starts with Melina healer and her amazing Healing Rituals Wellness Center in Montrose, California. This is the same office where I work my life coach clients if we are not at the gardens or somewhere else.
Melina makes her own candles which adds to the beauty and serenity of her space.
Melina specializes in Chinese Medecine which includes many modalities such as acupuncture, acupressure, cupping, Tibetan singing bowls, reiki, energy work and much more.
She truly uses ancient healing arts to help restore and purify my mind, body and heart. In fact my body falls into such a deep, safe state that I can feel the healing taking place. Before hand my body gets so excited about relaxing. If I was a dog I'd be wagging my tail.
Being open minded has helped manage my multiple sclerosis. Learning different healing modalities and trying them out has lead to some amazing restoration. I'm looking forward to more of it.
The flowers are from Descanso Gardens where I take walks and client sessions. The beauty, especially this time of year, is astounding. Humbling. Calming. Settling.
One of the many paths at Descanso Gardens. We walk it every week and almost every week we find something new. So....who's going to join me next time?
Let's walk and roll through the gardens. Let's heal with Melina. Let's all say #takethatMS
Saturday
Well, made it through the day. Have had way too much going on and haven't been able to truly rest and rejuvenate. Looking forward to the next week when hopefully my schedule relaxes a bit.
Ever notice how's one friends and family can let you down more than anyone or anything?
Had a horrible weekend and felt left out. My MS was was very bad but no one seemed to care. Friends/family seem to know nothing nor want to know about my multiple sclerosis. That's the tough part. They not only don't know but they don't want to know. Nor do they seem to care about my life in general. I see some of them only about four times a year and now just heard it will only be three times this year and the first one was a disaster.
It hurts so much. To think one's family and friends do not care. Maybe they do but they are remiss in letting us now. Half have yet to watch my interviews with Madeleine Stowe for TakeActionMS.com. Half of them never watched my faith journey as shared to our local church. This has been an amazing year for me yet part of my family seems to care less.
How do we move forward when we want so to share our journey with our loved ones and they don't want to share it with us?
Well, what one doesn't do is go onto Facebook and realize that they these people not liked any of your posts for at least four months. They like everyone else's activities. Share everyone's but haven't liked one gosh dang post. There's an obvious bitch message trying to be presented but not sure what or why.
And then get a load of this one: They are too busy. Just much too busy to watch my interviews. Yet they continue to send me videos of other people. Friends of theirs to watch in my spare time. Wtf? Really?
Haha. Venting feels good and that is one reason to keep this journal. Since they don't read my blog or care about my illness, which has been at an all time high lately, then vent away.
So, what can we do? We can vent to ourselves (and the world) and keep a journal. Writing is very cathartic and helps us through the hard times. Mostly it helps us get our thoughts and emotions straight before we approach these folks that have hurt us. This upcoming crucial conversation is a stressor. Acknowledge this fact and plan accordingly.
Especially with MS, when our emotions can roll like a coaster, it can be very helpful to gather our thoughts, several times, and let our emotions go through their Natural course:
1. Hurt
2. Anger
3. Grieve
4. Console
Yes, it's true, even for a small nit as feeling left out can hurt like the dickens and going through all of these emotions is vital to a healthy return to life.
I was hurt. Am hurt. Am angry. Very angry. But what do I grieve about? Because I was hurt and that's a valid reason. Also because I was beginning to have dark, unhealthy feelings. Like I deserved the illness, I was being punished and they were helping. One negative thought leads to another so remove them from the beginning.
Breathe deep as you grieve. Review the emotions you have felt, the part of you that felt left out and breathe deep. Calm yourself but listen to yourself.
Then, when ready, move to consoling. Really? YES! Cradle your heart in your hands. You didn't deserve this negative weekend. This was their issue put upon your life. Breathe deep. Breathe deep. Gently rock your heart and calm yourself. Talk to yourself and realize it is going to be OK. There is almost nothing more painful then to be with folks who don't seem to care about your life. But that's their loss. And we don't want to be like them.
Instead, let's see how we can be the bigger person. How can we take this damaged heart of ours, fill it with love and move on?
Praying helps for me. Just talking with God. All day. All night when I can't sleep. But I am weak and still have a lot of hurt and anger. This process will take awhile. The fact is I did what I cold. I was present. I was there. I made numerous attempts to engage. These are the actions I could take, and did. Nothing else is in my control.
Breathe deep. Breathe deep. Breathe deep....
Breathe deep and, if you can, go somewhere peaceful and serene. Take five for yourself today. Remember our hearts are fragile but capable of so much.
Breathe deep and love yourself.
Thursday
Another horrid night of pain. Not really sure why as I had an amazing dinner f salmon and asparagus made by my wonderful 83 yr old father. Maybe it was the wine. We did enjoy several glasses while dad cooked and mom and I visited.
The recipe came from the Wall Street Jounal for Salmon, Asparagus and twice-baked potatoes.
Wednesday
Oh man. Horrid night trying to sleep. Inflamed and MS at its screaming worst. Took a warm bath at 1am to help relax the muscles. Not sure I ever rested. Not feeling it that's for sure.
But...a great day in front of me. A couple of exciting projects to work on. You know me and projects!
Yep. That me!
Marketing, life coaching, home and more. Love my friends and clients who keep me busy and productive.
Being productive is one of the best things to find on one self especially after a diagnosis of multiple sclerosis. It's the toughest but one of the most important aspects in life, feeling worthy and productive.
Finding something to be productive with can be difficult especially with a chronic illness. There are work projects, home projects and community stuff, such as churches and groups with which to belong. But managing our health while we work is difficult.
I find that even though I appreciate the invisible aspect of MS it can also make the illness very difficult. Oh, you look great! And while that sounds nice after awhile it gets old. Yes I look great but my legs are on fire and I can't use my hands for diddly.
Anyway, a morning ramble to get us started for the day. Find your projects that can help you help others. Let's chat about them. Call me at 818-585-5660. #takethatms
Tuesday
Wow. Slept through the night and zero pain. Zero!
Not even sure why but darn it felt great.
And then today - today is therapy tuesday! Love this day. My new day of restoration and rejuvination.
My appointment with Melina Healer was as amazing as ever. Acupuncture, acupressure, cupping and Tibetan singing bowls.
More to come on this but we are talking a whole new level of wellness and awareness. A level to be obtained and maintained. In fact it has become a priority and will become part of my new financial budget. Thank you Melina Healer at Healing Rituals. Her studies and degree in Chinese Medicine and years of practice know exactly what this Girl with MS needs and wants.
Monday
Ever have one of those days?
9am
I just spent two days with my family and the conversation was quite interesting. Or lack of it.
One person asked me a personal question. The entire weekend. One personal question, "How was your time with your friend?"
And then, nothing else. Not a "how is your MS doing?" or "how's your blog?" "Heard you published some cool webisode (TakeactionMS) with actress, Madeleine Stowe." Something of personal interest. I found it quite amazing. We want to count on our family for friendship yet those closest are often the worst culprits. They don't mean to be but it happens. Monkey in the barrel. That was me - still in awe at how many things I could do wrong in such a short time.
The feelings evoked through these slights were dark, black. Unsettling. With much time together this past year the siblings rejoiced in grand camaraderie. Feeling excluded even more when the family put out 8 chairs for the 9 of us. The whole situation was rude and not fun. Patiently my lips stayed closed and found enjoyment until it was over. It was rough and tough. May not sound like much but feeling like the third wheel is never pleasant.
Well, at least the GWMS blog is doing great! Thank you all! LOVE my readers, viewers and followers.
The MS has been crap lately. Been dealing with an amazing amount of pain. The worst to be remembered. Not much to do but the other day I broke down and took two advils. Those who know me realize this is quite a feat as NSAIDs are usually avoided.
The nights are the worst for the pain. Visually, the cooling flow of a river is in my mind. Here I am fly fishing the Kern River. Way back, before MS, when I was just a young adult, my days were spent guiding folks in a paddle raft down the mighty Kern River. Years later were spent white water kayaking in the Pacific North West (PNW).
I've been also turning my attention to prayers, meditation and music. Praying gives me focus - to thank God and show my gratitude for the good things received. There are always good things, they can just be shadowed by the bad ones. And the writing as we all know is cathartic.
8pm
Well just wrapped up an AWESOME client meeting! This one is for marketing. Love the client. Love the project. Gave a small presentation to the governing body and it was all well received. My schedule is pleasantly freeing up. My penance is paid. Not sure why I felt it necessary to punish myself with volunteer work but for whatever reasons, my desire to work my fingers to the bone for nonprofits has waned significantly. While I'm still involved in several great organizations, I have much more time for GWMS and other projects that will help pay the bills.
Watch this spot!
2 comments:
I hope you get some relief from the pain. I miss you and glad you were able to get away for a few days.
Thank you @RedHEadNut! I miss you too! xoxo #takethatms #mspals msawareness
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