Dreams

“Dare to live the life you have dreamed for yourself. Go forward and make your dreams come true.”
Ralph Waldo Emerson

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Dreams, we all them. But no one person, dreams for exactly the same thing. As a young girl, many of us dreamed, of the handsome man we would someday meet, fall in love and get married. Or maybe we had loftier dreams, being doctor, lawyer, astronaut, or even president. But none of us, dreamed that migraine and chronic pain, would be a part of our lives. That every step we took, migraine was right beside us, how it could have the power, to change our dreams. Until we took that power back, by learning all we could about migraine. Finding the right doctor to partner with, to form a treatment plan, that would put migraine back in its place.

Sounds too simple, you say? You’re right, it takes hard work and dedication. Finding the preventative medication, that will work for you. Doing an elimination diet, to find any food triggers. Making lifestyle changes, adding relaxation techniques, biofeedback or mindfulness meditation, and sticking with it. This is what you must do, if you dare to live the life you dreamed of for yourself!

Go forward and make your dreams come true! I have seen this happen, within my circle of migraine sisters. Remember dreams are different for everyone. Two swan with dolphins, one returned to college and received her Masters in Nursing, another took an extend road trip with her husband, still another took two road trips with her boyfriend, something she thought, she would never be able to do, one is very active in a organization called ZimKids, and yet another as returned to college to work on getting her Master degree, and lastly one is very active in a foundation for young women. Starting this blog, was a dream come to true for me.

Your journey with migraine, doesn’t have to keep you from your dreams. You’re in the driver’s seat, make the most of it. Yes, there is going to be rough times and rocky roads, but know that you have the strength and hope, to get through them. Most importantly, you are never ALONE!

“The future belongs to those who believe in the beauty of their dreams.”
Eleanor Roosevelt

Live with hope,
Roni

 

Credit: Images purchased from Storyblock.com

My Warrior Mentor

“Whatever you are physically…male or female, strong or weak, ill or healthy–all those things matter less than what your heart contains. If you have the soul of a warrior, you are a warrior. All those other things, they are the glass that contains the lamp, but you are the light inside.”
― Cassandra Clare

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My sweet Mother, taken from us too soon!

My dear Mom, was my warrior mentor! Born with the genetic markers of Polycystic Kidney Disease, passed to her from her Father. Which is how this disease works, it can only be passed, from parent to child. It lies dormant in the body, until your mid 20’s, when the cysts can then be seen by ultrasound. At this point you know that you have PKD, but there isn’t anything that can be done about it. Other than, do your best to be very careful of what you put in your body, and the effect it could have on your kidneys. The kidneys are the clean up crew for what passes through your body. By making sure what you are eating, drinking, being careful of medications, including OTC, are kidney friendly items. The kidneys get a fighting chance of having more time. There is no cure.

My grandfather passed away at the age of fifty-four from this disease. There were no dialysis machines, no transplant options then. My Mom was ten when he passed, so she remembered quite a bit of what her Father went through. The ugly and ignorant things, said to her Father because he couldn’t work, so her Mother did. He was called fat and lazy, by people who had no idea there was a reason for his weight. Upon his death, his kidneys weighted ten pounds each, from the cysts, that sent him into kidney failure, and caused his death. PKD can cause cysts in other organs in your body, including your brain. 

Mom knew what she was going to face, but she lived life to its fullest, had five children, Lord help her! Made our house a home, no matter where we lived. I can still remember coming home from school everyday, and just feeling safe and content. Sometimes Mom would be in the kitchen and we would have tea and cinnamon toast. We didn’t have a fancy home, far from it, but where Mom was it was a happy place for me.

Mom loved becoming a Grandma, when Nathan was born she was over the moon happy! Then Brandon came along, soon my sister had a son, then my brother added two more grandsons to mix. Mom couldn’t have been more happy. Her second love was cats, which she had loved since she was a girl, you might have noticed the small cat pin on her blouse in her picture! I’ve also seen pictures, of Mom, as a young girl, her cat with a baby bonnet, inside a baby carriage! Mom often fostered kittens for our local Animal Shelter. Her favorite flower was Lilac, we had a Lilac bush in our yard, one day when mowing the yard, Dad mowed it down! Oh my, I thought she might do him bodily harm!! He was in the dog house for a long time after that.

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As Mom reached her late forty’s, early fifty’s her kidney functions started to decline, and her Nephrologist told her it was time to start dialysis. First she had to have a shunt placed in her arm, to accommodate the dialysis needles. This was done by a Vascular Surgeon, and then she was off to dialysis three times a week. This is a lengthy process, as you are basically having all of your blood removed, cycled through the dialysis machine, where all the impurities are removed, and then returned back into your body. It was here that Mom ran into her first glitch. Her shunt kept clotting off, making it impossible to use, so she had to be scheduled for surgery, with the Vascular team, to clean out the shunt so she could continue with dialysis. Problem was the shunt kept clotting off, after this happened for about the fifth time. They decided to run some special blood tests, and found that Mom had heparin antibodies. The heparin they were using in the dialysis clinic, to keep her shunt from clotting, was actually having the opposite effect. Through all of this, Mom kept soldiering on, she kept fighting and she didn’t lose hope that sometime very soon, there would be a kidney for her. And all of this pain, hardship, sickness, feeling so weak she didn’t hardly have the strength, to walk from one room to the next, all of this would be worth it, when she got a kidney.

They were getting ready to set Mom up for peritoneal dialysis, which you do at home and is fairly complicated. When she got the CALL, they had a kidney for her! Finally, everything she had hoped for was coming true. A new kidney, no more dialysis, the kind of freedom she had been dreaming of, fighting for! Being a warrior had led her down the right path.


It will be eleven years, this June that Mom passed. She continued to live life to its fullest, while she could. She was a warrior, fighting each new challenge that was thrown in her path. My Mom was a kind and gentle soul, she would never knowingly hurt another person. During the last four to five years of her life, she faced many medical challenges, that were for lack of better word, pure hell. For many of them she was unconscious, due to the nature of the medical condition. Or she would be scared and confused, these were the hardest, the time when roles are reversed. But somehow, someway, she battled her way back, until her body simply gave out. I believe she was a warrior right up until she took her last breath, we don’t know what she was thinking or feeling. But Mom was never a quitter, her warriors heart beat stronger within her, until it was time for her to go. I hope that I have made my Mom proud, and that I’ll be at least half the warrior she was.


“There are three qualities that every individual must have to achieve success: a Monk’s patience, a Warrior’s courage, a Child’s imagination.”
Sharad Vivek Sagar

Live with hope,
Roni

 

 

Addendum: 1/26/2018

Imagine credit purchased: Storyblocks.com

Queen For A Day

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“Rest and self-care are so important. When you take time to replenish your spirit, it allows to serve others from the overflow. You cannot serve from an empty vessel.” ~ Eleanor Brownn

Picture this, it’s 1558 and you have a dozen ladies in waiting anticipating your every need or desire. Your body aches and a nasty tension headache is brewing, after a long day of dealing with, the running of your kingdom. This was the day set aside, to hear grievances, from your people, and solve these problems.  Not to worry, a hot bath and massage is waiting for you. Feeling too fatigued to go the royal dining hall for supper, no problem, supper is brought to you. When you are ready for bed, your ladies in waiting, help you disrobe, and get into bed. Making sure your sleeping environment is cozy, relaxing, free of noise, light and distraction. Throughout the night your ladies in waiting, take turns watching over you, in case you might need something during night. The next morning, the routine starts over again, with your ladies in waiting fetching your breakfast, and maybe filling you in on palace gossip as you eat. You get dressed for the day, with the help of your, ladies in waiting, and because today is a slow day, with nothing urgent to do. You declare this day, a leisure day. For taking strolls through the Palace gardens, reading, a picnic on the grounds, followed by a nap or working on needle craft.

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While all of that sounds really fantastic, I don’t think that I could handle it day in and day out. But letting myself be treated like a Queen, for one day, that I could do. Migraine and Fibromyalgia, which equals chronic pain, takes a lot out of me. Often leaving me with bone deep fatigue, poor sleep, or painsomnia, the inability to tolerate the slightest touch at times, because my muscles hurt so badly. There is not one muscle group, that is immune for Fibromyalgia pain, my breasts even hurt, during a flare. I get charlie horses at night, in my legs and feet. There is a direct correlation between a migraine attack and fibro flare. For me there is also a direct link, to the barometric pressure changes.

Let’s talk about being a Queen for a day and self-care. As the quote I used above say’s, “you cannot serve from a vessel”. How can we help others, if our vessel is empty? How can we even help ourselves? Here are a few ways to practice self-care and make you feel like a Queen for a day.

  • A few years ago for Christmas, my son’s gave me a gift certificate for a spa treatment. Heavenly, it included a facial, full body massage, manicure and pedicure. Since the therapist was really thorough and took a medical history, she knew I had Fibromyalgia and didn’t dig in really hard in the problematic areas. It’s important that your massage technician knows your medical history. If a full body massage is too pricey(and they can be), go for an upper body massage.
  • This is one of my favorites; Turn off your cell phone, get comfy in a pair of PJ’s or sweats, read a good book, or have a movie or TV show marathon, with popcorn thrown in there sometime.
  • Self-care days should be, a break from all social media. Facebook, Twitter, Instagram, your Websites, Blogs, etc., will not crash and burn if you don’t make an appearance for one day. This includes your cell phone, leave it on for possible emergent calls, but no peeking!
  • Order take out for supper, no muss no fuss!
  • If you’re a hot tea drinker, indulge in your favorite relaxing tea today.
  • If you have a favorite sweet, but hardly ever eat it, self-care day would be the day to do so.
  • Depending on the weather, if you feel up to it and maybe your spouse or a friend, wants to come along. Take a stroll through your neighborhood, breathing in the fresh air. I have found this to be helpful, when I’m feeling a little down. I’ll take pictures of flowers, or anything else I find interesting. It lifts my spirits every time!
  • Get your hair done, try something different, go a little wild. It can really boost your self-esteem. While your there get a manicure and pedicure, if your salon offers them. There’s something decadent about having, a manicure and pedicure, especially a pedicure having your feet rubbed, feels wonderful!
  • Maybe you just feel like napping, that’s perfectly fine. This may be your body’s way of telling you, that your energy stores or depleted and need to be recharged.
  • Never ever, feel guilty about taking self-care days, ever!

By implementing a self-care day, you are making yourself Queen for a day! I believe those living with chronic pain on a daily basis, should be Queen for a day, at least once a month. More often than that, if your pain levels are higher and stay high for long periods of time. We are not doing ourselves, or our families, any good if we continue to push ourselves to a breaking point. Again, you cannot serve from an empty vessel! This includes your family, the migraine and chronic pain community, and most of all yourself. So allow yourself to be Queen for a day, and image sitting in that beautiful throne, in a mystic place, where all is calm, quiet and serene. After you’ve been Queen for a day, you are energized, your hope level on full, you feel peace, love and joy, your vessel is full and overflowing! 

“Self-care is not about self-indulgence, it’s about self-preservation.” Audrey Lorde

Live with hope,
Roni

Images purchased from Storyblocks.com

Migraine Ninja

“Achievement. Just another skill of a ninja.”
― Jarius Raphel

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A ninja has many tools at his or her’s disposal, all of them deadly, not counting the physical skills they have trained, long and hard for. Without their skills and weaponry, a ninja is just like every other person you pass on the street, ordinary. Ninja’s can be traced back to 14th century, Japan where their talents were used to spy and infiltrate the enemy. They moved like ghosts, getting the information they needed, to protect their families and homelands. I dare to say, they never slacked off on their duties, there was far too much at stake.

I can see many correlations, between a ninja and a Migraine Ninja. Let me list a few and see if, I can make them as clear to you, as they seem to me.

  • A Migraine Ninja also needs tools, and we are proactively adding more tools, to our box all the time.
  • The first line of defense, we add to our tool box, is our daily preventative. This is our most powerful weapon against migraine. Without it we would be a ninja, stripped of almost all of his weapons.
  • Next would be our abortive and rescue medications. Combined with our preventative, these are extremely powerful weapons against migraine.
  • For some the addition of Botox and nerve blocks, are added weapons in the fight against migraine. More tools to be added to our box.
  • Ninjas of old spied on their enemy, in order to gather information. As a Migraine Ninja, we most continue to learn as much as we can, about our disease. This a tool, but also an armor, to protect against spammers and the like. How can you stand up for yourself, advocate, if you don’t understand your migraine condition?
  • Be proactive, find ways to decrease the stress in your life, with relaxation techniques. Learn some kind of meditation, I have found Mindfulness Meditation, with the app Headspace, to be very helpful and easy to follow. I also practice Biofeedback, and find listening to music, Jazz, Easy Listening, Adele, and songs from the 50’s, to be calming when I’m feeling anxious. As well as, Chamomile tea.
  • Even as a Migraine Ninja, there will be times, that you feel depressed and anxious. Especially if you have clinical depression, living with chronic pain is not easy. Sometimes you have to pick yourself up, mentally kick your bum, and pour your own hope. If you are feeling overly depressed and anxious, and you’re not on any medication, there is no shame whatsoever, in seeking help. If you are on medication, and still feeling deeply depressed, I would say a chat with your doctor is in order.
  • Giving up is just not an option, I’ve worked too long and too hard!
  • The real joy comes, when you are able to help, encourage, inspire, uplift, bring hope to someone feeling hopeless,  on their journey with migraine. That feeling, knowing you have brought hope, back into someones life. It is more precious than gold, showing kindness is what a Migraine Ninja does, everyday in any way!
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A woman set free, from hopelessness!


“Grant That I May Radiate Thy Light, Thy Love,

Thy Healing, Thy Joy, and Thy Peace,
to All Those Around Me
and All Those in My Thoughts
This Day and Ever More.”
– Jonathan Lockwood Huie

Live with hope,
Roni

Light Conquers Darkness

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“At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us.”
Albert Schweitzer

Through every journey with migraine and chronic pain, there are dark places. I know this to be the case, with myself. Living with chronic pain, day in and day out, is very hard. Not just on our bodies, but on our mental health as well. I try very hard to keep my hope strong, to feed my mind with positive, uplifting, inspiration, messages. Practice Mindfulness Mediation, biofeedback and other relaxation techniques.

Even with these proactive steps, the darkness can creep in and sometimes blow out my light. Clinical depression can be, a hard monster to battle, especially if your light is out, and you are feeling hopeless. The last couple of weeks, have been a struggle. I’ve had laryngitis, for two weeks now. It vacillates from being able, only to talk in a whisper, to sounding like a very sick chipmunk! It’s been hard to talk to my husband, phone calls are out of the question! This has added another layer, to the isolation I was already feeling, due to intractable migraine. Which fed the blue moodiness I was feeling and didn’t like at all! 

Every time I feel myself in a situation like this, it is not long at all, before one of my migraine sisters, contacts me with a word of encouragement. Without knowing what, I’m going through on any given day! That encouragement is enough, to rekindle my light and hope! This was a message I got recently, when I was feeling really low.
Everyday…
You are loved.
You are thought of.
You are prayed for.
Love you!

Sharing encouragement, inspiration and hope, makes sure that the light always wins, over the darkness. While it may seem that you are walking through, a very murky, gloomy, dark forest, there is a light at the end of that path. Hold on to your hope, the ones who love you, and never forget, you are not ALONE EVER!

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“There are two ways of spreading light; to be the candle or the mirror that reflects it.”
Edith Wharton

Live with hope,
Roni

 

 

Pour Your Own Hope

“You may say I’m a dreamer, but I’m not the only one. I hope someday, you’ll join us. And the world will live as one.” John Lennon

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For some time now, I’ve found myself, feeling a little lost, out of touch, moody and blue. While I know the reason for these feelings, it doesn’t make them any easier to deal with. Being in constant pain, and having clinical depression is the reason. Dealing with intractable migraine and an increase in fibromyalgia flares, are causing my depression to kick up a notch. In my mind I know this, understand this, but it really doesn’t help.

After another long day of pain, listlessness, feeling as if I were a hamster running on its wheel, getting nowhere. Except I don’t have the energy, to run on a wheel, my fatigue is bone deep. I thought to myself, snap out of it sister, where is your hope? Hope isn’t a tangible thing, you can’t feel it, touch it, see it, you must have faith that hope is there. You can see hope at work, in the many who live with migraine and chronic pain, as they actively seek new treatments, other ways to manage their pain. Hope keeps them looking, instead of just sitting down and doing nothing more, accepting the status quo.

It dawned on me. that when your hope is low, you have to find a way to pour your own, to fill your “hope tank” you might say. Seek out quotes and sites, with inspiring, encouraging, uplifting messages. I find many such quotes on Twitter, Princess Sassy Pant’s & Co, Karen Salmansohn, and other Facebook pages. The “hope quote” I’m closing with is one of my very favorites!

“Hope is a thing with feathers, that perches in the soul
And sings the tune without the words
And never stops at all”
Emily Dickinson

Live with hope,
Roni

 

Be Kind

“It’s so easy to laugh. It’s so easy to hate. It takes strength to be gentle and kind.” Stephen Morrissey

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My motto for 2018 is, be kind! Sounds rather simple, you may be thinking, but if you look back over 2017, there were so many actions that took place, that were far from kind. A lot of folks, look to the leader of our country, for guidance during challenging times. Sadly that didn’t happen, folks become more uncertain and others saw it as a chance to, further bigotry. If there was ever a time to start, showing kindness, even small acts of kindness, it is now.

Especially among the migraine community, this is a time to lift one another up, not tear them down. Using the various migraine support groups, that host and leaders, have worked so hard, to make a safe, calm, supportive place, is unthinkable. And so very wrong.

These are stressful times, and while stress alone, doesn’t trigger a migraine, when added to other factors, causes a cumulative effect, that can trigger a migraine. Before you fire back at someone, use these THINK  guidelines.

  • T ~ is it true?
  • H ~ is it helpful?
  • I ~ is it inspiring?
  • N ~ is it necessary?
  • K ~ is it kind?

If you cannot answer yes to these questions, then it’s probably best not to say, what you had in mind. Because these kind of comments, have a way of biting you in bum, somewhere down the road. And you’re left with a mess to clean up and a boatload of stress!

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My Mom always said, “you can catch more flies with honey than vinegar”! Why anyone would want to catch flies, is beyond me! But I got the moral behind the saying. Being kind, takes a personality with more honey, than vinegar. Bee’s are busy little creatures, going from flower to flower, spreading pollen, that eventually creates the amazing honey, I love to drink in my tea every morning.

Just like the bees, we can be busy spreading kindness, as we go about our day. Kindness isn’t necessarily difficult, a smile and thank you, to the gentleman who held the door for you, helping an elderly woman, put her groceries in her car, a quick complement to a woman, as you pass her, about her fabulous boots. Complements about adorable babies/toddlers, as well as, a person dog. Keeping track of which migraine friend, who hasn’t posted in a day or two. This usually means, the migraine beast has them in their cave.

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I have several migraine friends and a few who are, as close as a sister. I didn’t need to use honey, to start or retain our friendship. We have much in common, namely we are on this migraine journey together. But I don’t take their friendship for granted, like any relationship you have to be present and work on it. “Bee” there for each other and always be kind. Showing kindness and bring joy and happiness, to another person, is an awesome feeling, it doesn’t have to cost you dime, but the reward goes on forever!

“Kind words can be short and easy to speak, but their echoes are truly endless.” Mother Teresa

Live with hope,
Roni

 

 

Out With the Old In the New

“Let’s start the New Year right
One minute to midnight
One minute to go
One minute to say goodbye
Before we say hello”

I’ve never been one to make New Year’s resolutions, for the most part, they’ve always gotten broken. I think it’s much more productive, to look back at the old year, and think of the mistakes/missteps I’ve made, and use those examples, as to how I can do better this year.

The one thing that I have challenged myself to do, the last the last two years, was enter the Goodreads reading challenge. I have beat my challenge in 2016 by 20 books and in 2017 by 19. I love to read, I can thank my third grade teacher, Mrs. Anderson, for awaking the love and magic, of reading within me. Everyday she would read a chapter or two, from one of the Little House on The Prairie books. I became enthralled in the story and wanted to know more about this family. Every summer after that I would spend reading, different sets of novels, Nancy Drew, Hardy Boys, Dana Girls, etc. My Mom was an avid reader also, something that we took great advantage of, when she was deep into a book you could ask her just about anything and get the answer, uh-huh! As I got older she introduced me, to some of the authors she liked to read.

I always have a book ready to read, on my Kindle Fire. When I’m going through a bad migraine cycle, I have days that I can’t tolerate being on the computer or watching TV. The Kindle Fire has these, nifty little gadgets, that allows you to change the page color, lower the light or even go ahead and turn on the blue shade. I can usually read, reading takes me away from the pain, for a while. I enter into a new world, that the author has written, in a book you can go anywhere, be anything, live another life, explore the world, and all you have to do is open a book! I will be forever grateful, to Mrs. Anderson for sharing this gift with me. Which I shared with my son’s, I started reading to them when they were, only a few months old. They are both avid readers, it’s a gift that keeps on giving.

As you think about the New Year and all it may hold, don’t heap a bunch of resolutions on your head. Think of all the things you did right, and keep on doing those. As for the things that didn’t go so well, think of them as a life lesson, and don’t repeat them. Living with migraine, is tough enough on us already, don’t make it harder on yourself. Breathe, relax, use biofeedback, learn some form of meditation, it’s not easy at first, but worth the work.

The quotes I’m using are from a movie, Holiday Inn made in 1942, one of my favorites, I love the Classics!

 

 

“Let’s watch the old year die
With a fond good-bye
And our hopes as high
As a kite”

Live with hope,
Roni