When an MSer plays normal

MSer playing normal 🙂

Last Thursday night I went out for girls night for the first time in a very, very, very long time. My sister (Kelly) and her daughter (Dawn) invited me to dinner and paint night ~ I LOVE food and creativity and them,so I was thrilled. Now here’s the kicker ~ these plans started to be made about a month ago, with just the paint night 🙂
I thought “2 maybe 3 hours if I include travel time” and they were driving so even that took some pressure off, surly I could do this! I do that much when we have to go grocery shopping! Okay! So, I prepared, we had the date locked in – nothing for the day before or the day after, whew! Then it got closer, leg spasms started that Monday, I was like NO! Don’t mess up my outing!!! Several warm baths with tea tree and peppermint oils over the next two days and they eased, again, Whew! Then I learn my sweet niece wants us to make it a full girls night out and take us to one of her favourite restaurants for dinner too ~ very sweet and I love food (did I already say that? *giggle*
But also running through my mind was “Oh my that’s another 2 hours at least!” *panic!*breathe* “I can do this” started running through my head like a mantra/ locomotive.
The day before came, we had a few errands to take care of then rested the rest of the day. Ate a good healthy meal, lots of water and soaked in my warm tea tree peppermint oil bath, bedtime early, slept in later than usual, took my time getting ready ~ no, we can’t just jump up and get dressed, makeup etc anymore, this takes thought, even if its just casual! Time came, Kelly arrived and I was still feeling good! YAY!!! We visited at the house for a bit with our Mother, then headed out for our adventure, it was 4:30pm.
We had a blast, dinner was totally yummy, we caught up on the goings on in our lives and giggled and of course ate way too much and still had some to take home. Then off to our painting session, which was also so much fun! We arrived back home about 9-9:30pm, went inside to show off our “talents” to Mom/Grandma, none of us will be hanging in a museum anytime soon, but Mother being the good Mom she is has hung mine prominently in our home *blushes*

Sounds like all went well, right? Well it did! but here is the rest of that MS kicker…. Not only do we have to prepare a day or two in advance, then after we pretend to be somewhat normal, we have to pay for it……. Friday wasn’t too bad, higher fatigue, some muscle stiffness, mostly in arm muscles I haven’t used in I don’t know how long, lol
But now today, Saturday, first apparently the fatigue had gotten to me because I slept nearly 15 hours and still woke up tired! muscles are all screaming and spasming and I have the loveliest shades of bruising you have ever seen thanks to afore mentioned spasms.

So if you have a friend or loved one that has MS, or fibromyalgia, or lupus, or other such chronic painful illness. Don’t take it personally if we don’t accept every invitation, and please don’t stop inviting us, just keep in mind that when we accept we literally have to nearly block off  a couple of days before and after the event, even if it is only 4 or 6 hours…….. and sometimes we really need to do it, so please be patient, we want to hang out, we still want to do stuff other than doctor visits, its just harder now.

Much love and peaceful blessings to all,

Kristine Marie Naef

 

Today is a get up and do day! My Life with MS

Multiple Sclerosis is filled with times of intense struggle followed by periods of calm. During the calm a new normal is found that consists of changing how everyday tasks are done and limiting those things that are not as important. Meds, vitamins, diet, exercise, and working to stay as stress free as possible helps to manage the symptoms and life goes on. Years pass by. Relapses happen. With each relapse a new normal is found and the process continues.

I wish I was one of those people. I wish I could say, like so many do, that I have had MS for 20 years and am still going strong or that it’s been 5 years since my diagnosis and my symptoms are still the same, (through various tests and past medical records my doctors feel I have probably had symptoms as far back as ten years but they were mild then} Until 2010 when my symptoms hit me like a bulldozer and I have never had a period of time when something wasn’t changing. MS has been fast progressing and aggressive for me. I know I’m part of a smaller population of MSers, but I think it’s important for the world to know that not all MS is the same.

Sure, I am encouraged by the stories of people with MS who advance in their careers, run marathons, and are seen on TV giving a face to MS. What bothers me are the numbers of people that think MS isn’t that bad, after all just look at so-and-so on TV or watch this video I saw of how someone drank a special mineral water and now lives symptom free.

We have done a fairly good job at informing the world that MS exists, but not so good at explaining that it can be cruel, painful, debilitating, and that a cure has not yet been found. Yes, I agree that not everyone will end up in a wheelchair unable to manage life on their own, but it happens and we have to be sure we are sharing both the good and the bad with the world so they know the truth and not just the positive, brave side we like to portrait. Being positive doesn’t mean denying how you feel and hiding those feelings from others. It’s acknowledging the ugliness of MS and choosing to push through anyway.

I never asked to get sick, to have to quit my job, to live day by day with struggles. That was never a part of my long term goals in life. I work hard every day to stay positive, encourage others and even encourage myself. But you know, some days I have to talk myself into getting out of bed. It’s true. I have even been known to argue with myself as I work up the strength to get a shower to start my day.

It’s hard. But even in the impossible, I see good things around me. I see people smiling because I said something funny. I see strangers extending a helping hand when I’m struggling to get the door open or needing help to get something from the top shelf. I see love in action and joy in some of the strangest moments.

No matter how difficult your day is, look up from your struggle and take a deep breath. What are some things in life that make you smile, that warm your heart, that bring you joy? Hang on to those things today. It won’t make the day easier but it will make the load lighter. MS is different for everyone, but pain is pain, struggle is struggle, change is change. Today is not a “give up” day…it’s a “get up” day.
Kristine Marie Naef

You Are Not A Broken Toy

Terrific blog!

Kelsey Horton

You are not a broken toy.

Your arm is not imprinted with the bite marks of a brother or friend or dog or frazzled mother.

You are not plastic.

You were not manufactured on a nameless assembly line.

You are not abandoned in a spider-haunted corner of a child’s closet, a casualty of the newest talking gadget.

You are not tattered, shredded, being held up to the light to see if you belong in the garbage.

You do not have batteries that whirl and grind in alarming noises.

There is nothing broken about you.

You do not need one more workshop, one more degree, one more drink, one more chance to prove yourself this time.

You do not need to hammer yourself into a mold.

You do not need to tone it down.

You do not need to act out the desires of your parents.

You do not need to…

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Just some thoughts…

Someone asked me “what makes me angry about the world?” Wow! So much to choose from.
First and foremost I guess would have to be the way people treat each other and other living things from their egos and hate rather than with compassion and understanding. So seldom do we humans go beyond the surface news, media or even our own bruised egos to even try to see from the others point of view. I hate injustice based on ignorance or even worse bigotry or any kind for that matter.
I get angry that we cannot trust our “journalists” to give unbiased reports of what is actually happening in the world, or even locally. I have to watch/listen to several different venues and even then I just try to find a thread of truth in the lot of it and then make up my own mind. I get just as angry that so many will take the “word” of some celebrity as gospel and go with that rationale simply because that person is popular or worse because they’re cute! We need to think for ourselves and ACT on that!
There is also upset that (in my opinion) hardly any of our so called “world leaders” have any integrity or courage to just simply do the right thing not just for the citizens of their own countries but of the world! Can it really be so hard to do? I do not think so and I also believe it would solve much of the worlds problems. Perhaps we should all ban together and bring into power Mothers and Grandmothers ~ we don’t give a shit about heroics rather we are far more concerned with our children’s safety and if anyone misbehaves ~ we’ll put their butts in a corner or if really bad to bed without dessert! Who would argue!?! No one wants Mother’s evil eye!!!
There is so much more, but that’ll wait for another time.
Peaceful blessings,
Kristine Marie

Living Out Loud

Yesterday I wrote a bio-type blog ~ it was part of a writing challenge I have started to get me more comfortable with writing. It didn’t work! lol
I was about as uncomfortable as it can get due to recent events that have taken place in my life over several months. What I wrote was about a 4th grade level!
I have never been known for being insecure, or holding back rather quite the opposite. But the fear instilled in me over the last few months made me water (as in flood) it down, so here is a second bio ~
Hello everyone!
I am Kristine Marie Naef, owner/creator of Wow Words Of Wisdom with Kristine Marie, here on WordPress and on facebook. Many of you already know that I have MS, multiple sclerosis, also I have battled breast cancer and with these fun things came a serious bout with sever clinical depression( with an attempt, thoughts of suicide which caused a brief but very needed stay in hospital) these are situations that have happened in my life, but they really aren’t all there it to me, not hardly!
There is so much more~
I grew up in a most loving and encouraging home, mostly in California, yes I am a beach baby, with my Mother and two brothers and a sister ( I am the baby, which in its self should explain a lot! lol) We also spent about ten years in Arkansas to help with my Grandmother as she aged so she could remain on her beloved farm for as long as possible. My Mother always told us kids that we were brilliant, capable and could do anything we wanted to ~ I am so certain there were times as a teenager that she regretted ever having said that to me, as I took her at her word, just perhaps a bit earlier than she had ever meant, lol
But I survived it all, and so did she! 😉
When I came back to California in the early 80’s I met a wonderful man (at least I thought so!) and we settled into life and within a few years we had a son, the center of my heart ~ I left the man, but kept my son. He brought me more joy and terrified me more than anything I could have ever have imagined ~ just a complete joy to be around. He was (and is) bright, handsome,witty, intelligent and thoughtful, and much like his Mother, extremely opinionated! But I can honestly say that nothing else I have ever done has, or will, ever be as important as raising him. Yes, I am proud, even though we have had some very hard/painful times in there too ~ I have always loved him and always will.
During the years I was raising him, I also opened my own construction clean-up and property maintenance company, which ran quite successfully for nearly 14 years, until the MS began to show its self more intensely.
That brings us here to how Wow got started ~ I wanted to give others a place to feel safe to open up about their own stuff going on in their lives, a place to share ideas, cultures, different beliefs, everything. A place where even if we disagreed there would be respect, compassion and understanding. I think I, with all of your help, have created just such a space.
I thank you all so much for being here with, for our holding each other’s hands as we continue on our life journeys, together
Peace and loves best to all
Sincerely
Kristine Marie

Find your peace, even if you have to walk away

Who I am

 

 

 

 

 

 

 

 

 

 

 

If you have been a friend of Wow for even a year, then you already know that my name is Kristine Marie Naef, and that I have multiple sclerosis and have battled breast cancer, and that I have most recently been battling severe depression ~
But those things are NOT who I am, they are challenges I have.
Who I am, is a woman that turned fifty this past August and is still learning, growing, screwing up, discovering new things about myself and the world around me.

This thing we call life isn’t always easy, or even pretty.
But it is always exciting, fascinating and most importantly it IS worthwhile! I am worthwhile! Even with all my blunders, mis-steps, failures and mistakes, I am still worthwhile and my life matters!
No, I probably won’t ever change the world (although I’d sure like to!) I may not ever be world-known, I’m okay with that.
But what I can do is try to bring some comfort to others, simply by being there to listen, help where I can (if they want it) and continue to learn and grow ~ in love, compassion and in my truth.
For my grandson, I am the best thing since sliced bread~ for me, he is my heart and easiest way to get me to smile. For my Mother, I am her confidante, loyal daughter and friend ~ for me, she is my hero, my teacher, my confidante and my very best friend.
I wish I knew all the answers, but I don’t. However, I do know this ~ We are all going through something and its a little easier when we know someone cares, someone sees us, acknowledges us.
I do care, you do matter and I am so grateful to be able to reach out to you, each one!
Peaceful blessings,
Kristine Marie

How To Use Fear As Fuel

Terrific idea! 😊

Unfuck Your Life

Hello World! How many of us have wanted to do something, but fear stopped us? How many times have you been nervous with butterflies, but didn’t know how to calm them down? Fear used to stop me from doing so many things. Not Anymore! I learned how to use fear and nervous butterflies to help me manifest the things I want in my life.

How to manifest while having those nervous butterflies? Last year my fiance took me ice skating for the first time in my life. I am not a fan of ice. The thought of ice skating terrified me. Blades on your feet and ice seem like a bad idea; I tried anyways. When I got to the ice rink, there were no handles or railings, just some snow piles in certain areas. I just stood there in the snow, watching my fiance smiling and having fun on…

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I am angry and everyone should be!

I recently celebrated my 50th birthday, no that isnt what I am angry about ~ I am feeling and looking great considering the last 6 years! lol
I went to the east to spend three weeks with some very dear friends, and we had a blast! Even through trip confusions, rearranging of plans/dates, business demands, and one very painful bad back~ we had a GREAT time! I am so glad that I was able to share this very special birthday with these awesome women and a couple of incredible men.
Here is what I am really angry about~~~
One of these dear, beautiful friends is literally in hiding for her life and the life, safety of her children~ they are held captive to the fear imposed by domestic violence and enforced by our own authorities here in the USA! She has taken extreme steps to protect herself and children, court appointed new identities for them all, restraining order (to which the police when contacted CALLED the aggressor and GAVE AWAY her city! He is not even a citizen in this country but since its not a felony to nearly kill your spouse the system wont even deport him. Forcing her to gather her children and whatever belongings would fit in her car and RUN in the middle of the night, again! So now she no longer feels the police are any help, just create for more danger~ imagine if that officer hadnt let her know that he’d been so reckless!  So she and her children live in fear while he does whatever he wants~ are you angry yet???
This is not ok, not with me…. I am not sure what I am going to do about this, but I can promise you and my sweet friend and her kids that I WILL be doing something.
I saw the fear they live in first hand (mind you just a small bit but still) we were giggling and visiting in a back room of her home one evening and we heard a slight noise on her porch~ the look that came over her and the children, their whole demeanor changed from light fun and happy to – I’m not sure how to explain it, it became a feeling of urgency to protect, prepare for the danger that might be there, waiting for them.
Now that turned out to be nothing, just some night noise that you or I would have ignored. But my friend cannot afford to ignore any sound, movement.
I am attaching a collage I made of just a bit of the celebrations~~~ I have included pictures with this dear woman (altered heavily) so her identity is not revealed ~ I did that to hopefully drive my point home. We have got to start protecting the victims of domestic violence and stop protecting the creeps that are being violent!

Celebrated my 50th!

When darkness tries to take over, hold on!

Hi! I am Kristine Marie, most of you know me through my fb page ~  https://www.facebook.com/KMN.W.O.W.WordsofWisdom and I hope it encourages, inspires and makes you smile and just feel good! I love doing that and talking with you all. But there’s a little something I have been going through, and I know from talking with several of you that you will understand, maybe even see yourself or someone you love in my experiences….
There will be light!                                                                                                                 Me depressed?!  Ha there’s no way! I am positive, strong spiritual beliefs, faith, I can shake this off. “I just need to think clearly, everything is scattered and irrational, but I’ll be fine.
I don’t need “help” ~ I got this”
Those are all famous last words of a fool ~ this fool.
I don’t know why depression surprised me so, no one else seemed surprised, well only that it had held off for so long.                                                                                                   A very sweet counselor at a local mental wellness center explained rather well as she tried to grasp all that had taken place in my life since 2009, well really since 2004. I will spare you all the details and give the “shortened” version.                                                      First I began to notice a numbness (yet painful) feeling in my feet, along with a feeling like my brain wasn’t fully connected at times in 2004 ~ it progressed and began to affect my speech and I would mix up my words and I knew it but I couldn’t correct it, a very strange and frightening feeling. It got to the point I could not ignore or make excuses for it.               That was in 2009, I closed my property maintenance business, which I had owned and operated for 14 years and I LOVED my work! But I just couldn’t do it anymore, I knew I was getting unable to do the kind of physical work it required. Then my doctor and I went to work on figuring out what the heck was happening~ 18 months of aggressive testing and watching my health deteriorate, we had our answer.                                                       In 2010 I was diagnosed with MS *multiple sclerosis* or as I call it *my body’s bully! I was told by some wonderful specialists that there was no cure for MS and that the damage done could not be reversed at this time but that I could hold the progression off a little bit with certain medications. That meant no more surfing, skating, dancing or worst of all ~ no playing and running with my grandson! I was told I would need my walker forever and that because the relapse I was in I could expect to still end up in a wheelchair, everyone seemed quite surprised that I wasn’t already. This information was unacceptable to me! I wasn’t going to just let this thing come in and wreck my life, I was still young and strong and I had things I wanted to do!!! I’ll talk more about what happened after that another time, this is still the shortened version remember!?! Lol
Now I had family around that supported and love me dearly, I know that and I am ever so grateful for them. However there is a terrible aloneness with something like that. I didn’t want to spend my days trying to explain this thing that had taken over my life and turned it not only upside down but inside out as well! Feelings of “what do I do now? What can I do? What use am I? And the biggie ~ why did this have to happen to me!?! I had no answers. And for the first time in my life I felt useless, and afraid. Those are two emotions I honestly had never felt before in my life, I blame my Mother! She raised me to believe I was a miracle, a wonder, capable of anything I set my mind to~ but I hadn’t set my mind on this. But I was determined to not live in that cloud of grey! So, I went to work on strengthening my legs again, I mean come on ~ I had been so active all my life surely I could do something! During this time some very personal and emotional things happened too, some devastating, others glorious ~ like my grandson being born! I celebrated the good and wonderful, and “handled” the ugly, or so I thought.
In 2012 I surprised my general doctor and neurologist by using my cane more and no aids at all when I am at home! I only need my walker when I will be walking or standing for long periods of time. That’s another thing I will talk more about later.                                       Well I have always been an over achiever and love to multitask, ha ha, so in June 2013 I was diagnosed with breast cancer. I feel so blessed 1) that we caught it early (stage 2b ductal carcinoma) 2) that where I live we have the greatest cancer treatment center and team of doctors are just incredible, efficient and caring, truly caring. Now eight surgeries, and nearly eight months of chemotherapy, I am doing really well. I felt like whew! I got this handled, life is good! And it is, I truly believe that!
That’s why I was so shocked when a few months back that ugly old dark cloud started coming back around. How dare it! Didn’t it know I had beaten all this crap and I wasn’t done yet either, I was and am still fighting to get back to where I can run and play with my grandchildren ~ that darkness didn’t belong here! I was getting healthy and stronger and we were getting out to socializing again and I had/have so many who love me and cheer me on, this thing didn’t belong! It was silly to be sad when everything was going so right! I had to shake this off. I was fine. I was happy, there was much to celebrate. This had to go. And that’s what I did, I shoved it down and told it to go away, and pushed it under the carpet. Yeah that didn’t work too well. I remember the day (not the date, just what had been going on) I was sitting at my computer writing a short little note to go with a facebook poster with my own quote on it for a fabulous, amazing, energizing group I belong to that were featuring my poster and I was listening to the two women who founded this incredible wellness site that is the group, they were talking about “having a joyous life despite adversity and I was cheering them on and agreeing with every word they were speaking…. It was about a half hour show they were doing, and it was about 15 minutes in that I stopped writing because I could not see for the down pouring of tears. I cannot even begin to find the words to express just how I felt in that moment, or all the days after. I tried to hide it, and I did a pretty good job of it, mostly. Everyone who loved me knew something was “on my mind, bothering me” but no one knew what. How could I say that after all I (and they) had come through, that now I was feeling so incredibly, overwhelmingly sad? I would cry uncontrollably for hours, hidden away. Then wash my face and pretend everything was great. Then finally, I couldn’t pretend all was well anymore and thankfully I was talking with a friend who suggested I get some help, which I did. First going to a psychologist, I did learn some valuable things from her, but more medications just wasn’t what I felt I needed. I needed to address all that had gone on, yeah even mourn for the life I had before MS and the cancer and everything, lost relationships, relationships that have been deeply damaged. Everything.
Now I went a different route by using Emotional Freedom Techniques, or EFT (often known as Tapping or EFT Tapping) and I am not selling anything here, what works for one may not work for all. But for me, this is working, and it’s working on getting rid of rather than covering up the ugly thing we call depression. I will tell you right now, it is most effective (as anything is) when you commit to it completely. And that’s hard! I mean really really hard! But you only get out of it what you put in, energy wise .After a couple of months of working on this, I am slowly getting back to me again and I cannot tell you how great that feels! It’s not gone, I still have a lot of work to do on me, but I can see the light at the end of this tunnel, I am feeling joy again, I feel hopeful for the future, and I am even playing with my grandson!

With loves best energy, Kristine Marie

Please, if you are in need of mental health services, please contact a licensed professional in your community. If there is an IMMEDIATE CRISIS such as a child or adult currently being abused, suicidal or homicidal thoughts or actions, or any other mental health emergency, CALL 911, or contact 1-800-SUICIDE (1-800-784-2433) or 1-800-273-TALK (1-800-273-8255).

Please do not wait, you have every right in the universe to feel better, peaceful blessings

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