Easy Like Sunday Morning

“Ooh, that’s why I’m easy
I’m easy like Sunday morning
That’s why I’m easy
I’m easy like Sunday morning”

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This picture looks as close to, an easy Sunday morning, I could dream of! Add a book and nice cuppa tea, then it would be perfect. My Sunday morning topic is self-care, something that I think, as we journey longer on this path with migraine. That we either, become more aware of the need, to do so, or we think, we just don’t have time for.

Personally, I have learned that I must, take time for self-care. If I push, push, push, guess what? Migraine and fibromylgia, will push back even harder, kind of like taking a hit by the biggest guy on the football team. It is NOT a pleasant experience! My trick is to, divide up my household chores, into different days. This makes it easier on my body and less overwhelming.

“Why in the world would anybody put chains on me?
I’ve paid my dues to make it
Everybody wants me to be, what they want me to be
I’m not happy when I try to fake it, no”

Often times it does feel like the world, is trying to put chains on me. “Why can’t you come, you don’t look sick.” What do you mean, you can’t get all your chores done, you’re at home all the time!” And I really love this one! “Well golly gee, it must be nice to get stay at home all time.”
As if I, really enjoy being stuck in my house, about 98% of time and this past year, in my cave, about 80% of the time. Yep, I’m a real sadist, just love, love, this pain! They want me to be, what they think I should be. That is why so many of us with migraine, hide our pain, by putting on a mask. But that doesn’t make us happy and we shouldn’t have to do it! Those are the effects of stigma, plain and simple. I say that it is time to take off those masks, and show our true faces of migraine to the world. 

“Because I’m easy
Easy like Sunday morning
Because I’m easy
Easy like Sunday morning

In doing so, I believe, it will lift a burden off of our shoulders, releasing the stigma. Another way of self-care, shaking lose any mental block, that is holding you back. I recently started learning Mindfulness Meditation, meditation can be an excellent tool, in your migraine tool box. Setting up playlists on Amazon Prime music, that are soothing to listen to, when I’m feeling anxious. I’m an avid reader, my Kindle Fire is my best friend, reading takes me away from the pain. All of these things, make me feel “easy like Sunday morning!” 

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“Self-care is never a selfish act – it is simply good stewardship of the only gift I have, the gift I was put on earth to offer others. Anytime we can listen to true self and give the care it requires, we do it not only for ourselves, but for the many others whose lives we touch.”
― Parker J. Palmer

Live with hope,
Roni


*Songwriters: LIONEL RICHIE

 

 

 

 

Fierce Women of Migraine

“She made broken look beautiful
and strong look invincible.
She walked with the Universe
on her shoulders and made it
look like a pair of wings.”
― Ariana Dancu 

There are many types of women, making this journey with migraine. They come from all walks of life, each one of them, fierce in their own way. None of us have migraine, that is the same, for migraine is not a cookie cutter disease. That is something we must all understand, or we will become discouraged, if a medication that worked for someone else, didn’t work for you. Each of our bodies are different and several of us have comorbidities, that don’t allow us to take some of the migraine preventives, that others can use. Same for allergies that prevent us from using the most common abortives, making aborting a migraine attack very challenging. 

I’m going to insert pictures and a synopsis, of how I feel these everyday women, live fiercely with migraine. This is my brain child, I don’t know these women from Eve. I’m only using them to get my point across. 🙂

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Here I see a loving wife, who does the very best she can, to run her household, despite migraine. As many of us wives, also try to do, while many of you also work an outside job as well! By their body language, they seem very much in love. So I have to think, that her husband would be kind, caring and supportive, of his wife, when a migraine attack strikes. 

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We know that several professional artist, such as this ballerina, actors, and singers, have migraine. They have to work very closely with their doctors, so they can keep performing. I’d say that is pretty fierce and kudos to them for being able to carry on! They are a lot stronger than I. 

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I totally love this picture! I see pure joy in her face, her eyes are looking upwards, as if remembering, how awful her life used to be. The big smile because, after many years, her chronic migraine is now episodic! I can see her breaking out in a happy dance any moment! Did she get to this point by being apathetic? Not on your life, she was fierce and it took hard work and trust in herself and her doctor. 

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This granny is fierce, because she wants to be able to spend as much time as possible, with her grandchild. So she takes on the traits of a migraine ninja, to do so. Taking the best possible care of herself that she can. Avoiding her triggers, staying hydrated when outdoors in the sun, making sure she has her medication with if a migraine attack should strike. And having a backup plan for transportation. 

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Yes, healthcare professionals get migraine too and they have to take care of themselves and be fierce, just like everyone else. Maybe even a little bit more, as they have to be sharp, when dealing with patients. Even a few of the migraine specialist, I’ve met and heard speak at AHMA’s Annual Patient Conference, have migraine. Or someone in their immediate family does. 

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I applaud Mother’s with migraine, you may be the fiercest of us all! I honestly don’t know how you do it. Yes I do, you do it out of love, love is a fierce emotion, that will drive us to do, what we think is impossible. The love a Mother has for her child, is the purest, most beautiful thing ever! 

Do you know someone who is living with migraine fiercely! Please comment below, I’d loved to hear about them! 

“She has fought many wars, most internal. The ones that you battle alone, for this, she is remarkable. She is a survivor.”
― Nikki Rowe 

Live with hope,
Roni

 

 

Moody Blue

“Tell me who I’m talkin’ to
You’re like the night and day
And it’s hard to say
Which one is you.
Well, when Monday comes she’s Tuesday,
When Tuesday comes she’s Wednesday,
Into another day again
Her personality unwinds”
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Elvis has been a part of my life since I was born, seriously! My Mother really loved Elvis, they also share the same birthday, and I was born in 1964, right smack dab in the middle of the Elvis craze. I have one of his movies to thank for my first name. Though she always called me by my first and middle name, she named me after my maternal grandmother, she just added an E to it. Roni Anne, so I am an Ann with an E, like Anne of Green Gables, which is one of my favorite two-part movies. My entire family calls me Roni Anne, but in school and in the work place I always went by Roni. Having such a unique name can be cool, but it also can come with some rather embarrassing situations. For example in the sixth grade I was put in the boys gyms class, talk about humiliating! Now I can look back at it and laugh, not so much then.
When I was doing some research for this blog, I knew that I wanted to use Elvis and one of his song “blue” songs. I was amazed that he recorded eighteen songs with the word blue in the title. But “Moody Blue” fit my subject very well. 

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I have struggled with depression off and on, ever since my migraine disease, changed from episodic to chronic. I also was diagnosed with two chronic pain conditions, not long afterwards, and wasn’t getting the help and support from my internal medicine doctor, that I needed. My husband had asked him if he thought a migraine specialist, such as Diamond Headache Clinic would help? He flat-out said no! For the pain of the fibromyalgia, his response was to take hot showers. Not very helpful, uh? Was I suppose to live in the shower? I ended up kicking his butt to the curb! I did eventually go the Diamond Headache Clinic, it was a six-hour trip one way, and a strain on our budget. But I finally started getting the proper migraine care I needed. 

If you remember in my last blog, I mentioned that in 2001, when all of this started, I contemplated suicide. Losing my job, the never-ending pain, an unsupportive doctor, our best friends moving away and our oldest son moving out on his own for the first time. I had also just had a Total Hysterectomy and we hadn’t found the right hormone replacement therapy. I sunk into a pit of despair and depression, if I wasn’t in bed, I was curled up in a ball on the couch. I also began to cut myself, god you don’t know how hard it is to say this. Because I’m very ashamed of it, this something most people do because of  mental pain. Where mine was due more, because of physical pain. I worked this all out with the psychiatrist and there has been no more of that behavior. I contemplated suicide, then I made a plan, in doing so, it scared me enough to reach out and seek help. I’m so very glad I did!! Please if you ever find yourself at this crossroads, seek help as I did, your life is too precious to end it. 

Sometimes depression is brought on by things that are happening in your life and when those things are righted, you no longer feel depressed. But then there is Clinical Depression, this kind of depression just doesn’t go away on its own. You need to see a professional and get started on an antidepressant. You will need to be patient with this process, sometimes the first medication you try may not work. Don’t ever, ever be ashamed to seek help for any mental health issue. Many of us with migraine, also have other comorbidities, which are chronic pain in nature. These feed into depression, as the lyrics say, “you’re like night and day, and it’s hard to say, which one is you”! Remember you are never ALONE. There is HOPE!

“Oh, Moody blue,
Tell me who I’m talkin’ to
You’re like the night and day
And it’s hard to say
Which one is you.”

Live with hope,
Roni

 

Songwriters: MARK JAMES

 

 

 

Ho~Hum

“Compassion is an unstable emotion. It needs to be translated into action, or it withers. The question of what to do with the feelings that have been aroused, the knowledge that has been communicated. If one feels that there is nothing ‘we’ can do — but who is that ‘we’? — and nothing ‘they’ can do either — and who are ‘they’ — then one starts to get bored, cynical, apathetic.”
― Susan Sontag, Regarding the Pain of Others

 

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In the last few days, I have read some comments on, one of the Migraine Support Groups, that worried me. Comments such as, their doctor had told them to start a new medication, but they hadn’t done so. For fear of the side effects, this was something they should have talked, openly and honestly with their doctor about, before leaving the office. If you have a migraine specialist who will not include you in your treatment plan, it is time for a new one. I will post a link at the bottom of this blog, that can help you find a migraine specialist near you.*
A couple of other comments, purely showed, plain apathy in regards to new information, not being at all excited about the new drug, CGRP, on the horizon. They would rather live in complacency, with the “if it isn’t broke don’t why fix it” mentality. Maybe for them their migraine regimen works just fine, but for thousands of us, that just isn’t so. For myself, it definitely isn’t, I’ve been in intractable migraine for several weeks. My cluster headache friends, continue to suffer greatly. As does my sweet friend Julie, with hemiplegic migraine and maintains the most awesome attitude, I’ve ever seen. My Amiga, kept pushing and pushing to find, the treatment for her intractable migraine. Glory be, she has finally found a treatment that is giving her, the first no pain and very low pain, days in years! 

Like the kitten and the flowers above, they need tender, loving, care, in order to survive and thrive! Each one of us need the same thing, as we make this journey with migraine. We need a good migraine doctor, who will work WITH us. Family and friends, to support us, a reputable source for up to date migraine information. We must never become complacent and think we know everything there is know about migraine. Because new information flows in all the time, read as much of it as you can! So you can survive and thrive! 

Lilac my Moms fave flower, Purple Power!

“Affirmations are our mental vitamins, providing the supplementary positive thoughts we need to balance the barrage of negative events and thoughts we experience daily.”
― Tia Walker, The Inspired Caregiver: Finding Joy While Caring for Those You Love 

Live with hope,
Roni

 

*  https://www.healthcentral.com/article/why-how-and-where-to-find-a-migraine-specialist

 

True Love

“Loving someone and having them love you back is the most precious thing in the world.”
― Nicholas Sparks

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Credit: Trumpeter Swans, photo by Mick Thompson

 

Swans are one of the few birds that mate for life, I love how gracefully they glide through the water. Their movements looking like a ballet, maybe this is why they have actual ballets named after them. Both male and female swans, build the nest when it is time for eggs to arrive. They both also take turns sitting on the nest and it guard it quite ferociously. There is actually one recorded incident of a drowning, due to a man getting too close to a nest and not heeding the swans verbal warnings.
I love Mick’s photo of the swans above, this is the classic, heart shape neck pose so many of us look for. But is not really has common as you think, Mick had to wait hours to get this shot, he will tell you it was totally worth it! The photo absolutely represents true love!

By now you are probably wondering, what true love and life with migraine, has to do with each other? I’ve learned over the past few years, that it has a lot to do with my journey and walk with migraine. First and most important, is my husband Rick, without his support and unconditional love, I would have never made it this for. What a lot of you don’t know, is several years ago, when this all started, suicide was very much in the forefront of my mind. I never attempted suicide, but I had made a plan and in doing that, it scared me enough to seek help, by calling my physicians office. They set me up right away, to meet the intake counselor at our local inpatient, mental health facility. I willing checked myself in. It was the best thing, I ever did for myself, they were wonderful people, who helped me find my way. Rick felt so very bad, that he hadn’t noticed anything, but I had done a very good job hiding it. They also helped him to understand it wasn’t his fault either, that I just needed love and support. Which he has given me hundred times over and over again. 

Now that he is dealing with Lupus and osteoarthritis, which causes him chronic pain, I can empathize with him, quite well. He hasn’t let it get him down, in fact he was very relived to finally know what was causing, all the symptoms he had been having. Now is on a medication to help with and slow the progression, of the those symptoms and the Lupus. Just because your spouse or significant other, starts having health problems, doesn’t mean you toss them to the side for a new model! No way, we have been in this marriage for thirty-five years, there’s no way we are tossing all those years away! That is not true love! 

Next I have a different kind of true love, with my migraine sisters. We love, support, encourage, inspire, care for and are always there, when one of us needs the other! I have different ways of contacting each of my migraine sisters, so they are always a phone call, message, text or email away! It is a strong bond, that has not been broken and I love them everyone, they each have a part of my heart! This journey with migraine, would be impossible without them! I do not say that lightly, it is very much the truth!! 

 

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“Two things you will never have to chase: True friends & true love.”
― Mandy Hale 

Live with hope,
Roni

 

 

 

Tears

 “Strength is the capacity to break a Hershey bar into four pieces with your bare hands~and then eat just one of the pieces.”
― Judith Viorst

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I very seldom cry when, having a migraine attack or a fibromyalgia flare. I learned long ago that crying only worsened the accompanying headache and took away strength I needed to fight the migraine attack. These last few months, I have remained in intractable migraine, despite two, nine-day inpatient stays and have had my base line pain level, change from two, to four. I have not lost hope, to do so would be to despair and I do not intend to live in despair! 

Yesterday was an extremely bad day, with a fibromyalgia flare, that made me feel much like the Hulk VS Loki, in The Avengers! Myself being Loki of course and for your amusement!

 

Believe me when I say, there was not a muscle in my body, that did not hurt, not one!! It was quite an unpleasant day. I used all my comfort measures, my distraction techniques and can honestly say, that I couldn’t wait for bedtime, so I could escape in sleep.
Then very early this morning, something happened that has never happened before. I was dreaming that I was in pain and in my dream, I was crying. I actually woke myself up crying and yes, the pain is still here. I don’t always remember my dreams, sometimes I do, sometimes I don’t. I told my husband about it, thank goodness I didn’t wake him, he’s been going through a lot, since his surgery. 

My thoughts on this is, I try very hard to be strong, not to whine or whimper. Maybe there is just a certain point, your body get’s to where it says, hey you can’t ignore me forever! You can’t keep pushing the pain down, down and in your sleep, you are the most vulnerable. Those subconscious thoughts, feelings and pain, overtake us and spring up to the surface, gasping for air! It wasn’t an unpleasant experience, not really, but it opened my eyes to the fact, that I’m not handling my pain as well as I thought I was. I will keep working on learning Mindfulness Meditation, keep writing my blog, it is very cathartic and cut myself a break now and then, to have a pity party. 

“If I can see pain in your eyes then share with me your tears. If I can see joy in your eyes then share with me your smile.”
― Santosh Kalwar 

Live with hope,
Roni

Birds and The Bees

“Let me tell ya ’bout the birds and the bees
And the flowers and the trees
And the moon up above
And a thing called “Love”

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“A successful marriage requires falling in love many times, always with the same person.”
– Mignon McLaughlin

One of my readers, suggested this topic to me, when I first started my blog. She is one of my biggest cheerleaders, always ready with a kind word and lots of encouragement. At the time, discussing the topic of intimacy between a husband and wife, or significant other, was something that I didn’t feel at all comfortable with. I’m still not very comfortable, but I have a feeling, it might be the topic of some interest, that also carries a level of guilt, for those living with migraine and chronic pain. For that reason, I am willing to open a very private part of my life and share it with you. 

A migraine attack can be totally debilitating, in and of itself. When migraine switched from episodic to chronic, in 2001, it was like being hit with a ton of bricks. I went from having practically no migraine attacks, to having one everyday. Along with horrid nausea, vomiting, sensitivity to light and sound. In October of the same year, I was diagnosed with Fibromyalgia. 2003 came another chronic pain diagnoses, Degenerative Disc Disease throughout my spine. I was a 40-year-old woman, living in a 90-year-old body. 

Making love became very painful, especially during a fibromyalgia flare. My husband began to have problems with ED, which added a level of frustration and self-esteem issues for him. But looking back, I believe were precursors of his Cardiac Disease, that runs in his family at an early age. He had a Triple-Bypass surgery at age 54, nine months later after experiencing chest pain at work. He had to have a stint placed, to open a 100% blocked artery. His cardiologist told him he had aggressive heart disease, he is now on several medication to control the various medical problems, that come with that. One of those being Nitroglycerin, making all ED medications off limits and unsafe.

We’ve both come to realize that the physical intimacy, of making love is not a part of our lives. There is no guilt or blame on either of us for this. Does it mean we love each less? Absolutely not! We cuddle, hold hands, kiss, our marriage is strong, built on a foundation of love, in the good and bad, in sickness and in health. We are working on our 36th year together, somehow I think we will turn out just fine! 

“Love recognizes no barriers. It jumps hurdles, leaps fences, penetrates walls to arrive at its destination full of hope.”
– Maya Angelou

Live with hope,
Roni

Comfort

 

 

I’ve been doing a lot of thinking about comfort lately. There is the kind of comfort you give a friend when they have lost a loved one. There is comfort we try to pass along to our fellow migraineurs, when they are going through a rough time. Then there’s the comfort we try very hard to give ourselves, when we are fighting the beast called migraine, in a particularly hard battle. These are the battles that we tend to feel the most alone in. 

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Much like a caterpillar, inside its protective cocoon, the environment is just right, to keep the caterpillar, safe and comfortable until it’s time, for it to emerge as a beautiful butterfly! Sometimes we are well aware, that we need some down time, a little time spent inside the cocoon. So we can rest, relax and rejuvenate ourselves. We are of no good to anyone, if we become burned out and ill, from pushing too hard and too far.

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This hound and cat have truly learned the art of relaxation and comfort, and if you own either one, or even both. You know how much comfort they can bring, to your everyday life with migraine. They show you unconditional love, and always seem to know just when we need to them. When we are hurting the worst and need the comfort, their warm little bodies and presence can bring us. The help us keep hope alive in our lives!

 

I have other comfort measure that I lean on, during a bad spell. Now yesterday was a very bad day, a level 10 migraine. With pain that high, I am unable to use my distraction techniques. But I can use some of my comfort measures, my Migraine Hat, the bag filled with flaxseed and lavender, heated in the microwave, this I place on my neck and feels heavenly. PowerAde Drink with potassium, calcium, magnesium, Vits B3, 6 and 12, to keep me hydrated when I’m too nauseous to eat and of course my peppermint tea. 

My distraction techniques include, reading on my Kindle Fire, I love that it has the option to change the screen from regular paper white, to other colors that are easier on yours eyes, I use Sepia. Also I can always turn the blue shade on whenever I want and lower the light level. I have two games that I play, on my Kindle and they are really just mindless fun, something to do to keep my mind occupied, while still having fun. Kind of a brain work out! lol Blossom Blast Saga and my newest addition, that is so much fun Simon’s Cat, you may have seen the Simon Cat stickers on Facebook. I really get a kick out of it, because of the facial expression and body language of the cats.

I usually watch quite a bit of Netflix, but haven’t done as much of that, even with the light turned down, it has still bothered my eyes and the ear buds my ears.  I’ve done a lot more reading, and I’m 1 book away from meeting my Goodreads, reading challenge of 60 books in 2017. 

I wouldn’t call writing my blog a distraction, it’s so much more than that! It comes from my heart and I hope that it is an inspiration to others living with migraine. To know they are never alone and there is always HOPE!

“A library is a good place to go when you feel unhappy, for there, in a book, you may find encouragement and comfort. A library is a good place to go when you feel bewildered or undecided, for there, in a book, you may have your question answered. Books are good company, in sad times and happy times, for books are people – people who have managed to stay alive by hiding between the covers of a book.”  ― E.B. White

Live with hope,
Roni

 

 

Choose Kindness

We’ve all heard of the Fairy Godmother, who dispensed wishes to those in need. But let’s think a moment about, how nice it would be to have kindness fairies, who went about spreading only kindness! You are probably thinking, what do I need a kindness fairy for, I’d rather have the Fairy Godmother, who could grant me the wish of no more migraine. While that would be utterly amazing, unfortunately, we don’t live in a fairy tale.

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This is my vision of a kindness fairy, soft, gentle, caring, full of goodness and light. A person you could trust, see how gently she holds the flowers? Like they were as precious as a newborn baby, or a kitten or puppy, more precious than a hand full of diamonds. A kindness fairy should be able to instill confidence, in those around her. Be real and sincere, when showing or giving kindness. Even in the written word, people can tell when someone is being real or just giving platitudes. When someone in the migraine community reaches out for help or questions, they need a kindness fairy who is totally 100% commented, to giving them their very best. When you have a migraine friend who is going through a rough time, or someone in a support group you belong to. Build them up with so much kindness, encouragement, support and inspiration, that they will feel like “Queen” for the day! 

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Once you start making kindness a part of your everyday life, it becomes natural to you. Kindness costs us nothing at all, but the rewards are priceless! Seeing a fellow migraineur blossom with new-found courage, hope and inspiration, makes your heart swell! Don’t just use your kindness fairy in the migraine community, there are many, many people, suffering great hardships right now. And all of these tragedies have affected every American, who could use a kind word, a smile and a helping hand, even if it’s just to open a door. It is amazing how these small gestures of kindness can lift a persons spirits. Don’t let the negativity, we see in the newspapers, online and TV, coming out of DC, bring you down! It is not worth the stress and the possibility of worsening your migraine, do what you can to help and try to put the rest away.
To my migraine sisters, who were affected by any of these tragedies, my thoughts and love are with you and yours! 

“Attitude is a choice. Happiness is a choice. Optimism is a choice. Kindness is a choice. Giving is a choice. Respect is a choice. Whatever choice you make makes you. Choose wisely.”
― Roy T. Bennett

Live with hope,
Roni

Wounded, But Never Alone!*

“A friend who is far away is sometimes much nearer than one who is at hand”
― Kahlil Gibran

 

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The last couple of weeks have been extremely difficult, I had to watch from afar, as a dear friend, mentor and someone I love very much, go through a horrible situation. It was truly heartbreaking! I wanted so badly to be there, so I could wrap my arms around her, to let her know she was not alone! Something she tells those of us in the migraine community all the time. “There is HOPE!” “You Are Not ALONE” 

Right now her heart and soul are wounded and she needs time to heal, as we all would.  Many in the migraine community have reached out, to show their love and condolences, with food, phone calls, many, many phone calls, cards and messages. That is what I love about the migraine community, it is strong, we pull together, to support one another, we show love and a caring spirit to those who desperately need it. We have a, all for one and one for all, mentality! This is the kind of life my friend lived on a daily basis, because she loves and cares for those in the migraine community! 

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This kind of love, support, encouragement, inspiration, and kindness, is unlike any that I’ve seen, with other illnesses. We build bonds and friendships, that last years and stay strong. I don’t ever want to take any of my friendships for granted, because they are a true blessing. A blessing that has helped me to grow stronger, in my life with migraine. A walk I know, that I will never have to make ALONE, and there is always HOPE! 

“Because everything of value that we will know in this life comes from our relationships with those around us. Because there is nothing material that measures against the intangibles of love and friendship.”
― R.A. Salvatore

Live with hope,
Roni

*Dedicated to Teri Robert, my very good friend, mentor, a most dedicated patient advocate for migraine and headache disorders, you’d be hard pressed to find! I love you, my dear friend!