Relaxation Visualized

“The secret of relaxation is in these three words: ‘Let it go”!”
― Dada J. P. Vaswani

Each of us has different ways of relaxing, it could be an activity, such as walking, reading a book, working on a hobby, a favorite place to sit and commune with nature, yoga, and meditation, there are endless possibilities. Today I want to tell you about two of my favorite ways to relax. Both of them are done through visualization, though one began as a real activity. With the added stress of the coronavirus, those us living with migraine disease need to be more vigilant about relaxation and self-care.

I love to lounge in a hammock, gently swaying, reading a book, of course. On our family’s yearly camping trips, the first order of business was to set up the tents, then hang up mom’s hammocks. I would spend many happy hours in that hammock, while Rick and boys went fishing or hiking one of the many trails. I joined in on some of the fishing and hiking, I really do enjoy fishing. As there is no place to hang a hammock where I live, I have to visualize that experience now. By closing my eyes and letting my mind take me back to camping time. The smell of wood burning in the fire pit, breeze flowing against my skin, the sun warm on my face, calls of the birds in trees. Breathing slow and steady, in and out, as I let the memories take me back. I begin to feel the tension loosen from my muscles, and calmness takes over the anxiety. I feel totally and completely relaxed.

This relaxation scenario comes entirely from my mind, I’m not really sure what triggered it, but it works, and that’s all that matters. There’s something about having a bedroom with white lace curtains that blow in the breeze from an open window, that I find to be the ultimate in relaxation. I imagine myself lying on the bed, there’s a light breeze coming in the window, causing the curtains to move in and out slowly. It is quiet and peaceful outside, with no ugly sounds of traffic, just nature. I watch the curtains as they’re gracefully blown in and out by the breeze. I mimic that action with my breaths, in and out slowly, keep breathing, in and out slowing, watching the curtains. I continue breathing in and out until I feel relaxed, and the weight is gone. This visualization is one that I can drop into in a snap when I need it. This is very important when you’re struck with a migraine attack, feeling an anxiety attack coming on, or find yourself in a situation that is out of your control.

I hope that you find one of my methods helpful for you, or even adjust one to make it work better for you. Life with migraine disease is all about finding what works best for you, we all are very different, that’s what makes us unique. Never accept defeat; keep fighting. There is an answer for you.

“Relax, Recharge and Reflect. Sometimes it’s OK to do nothing.”
― Izey Victoria Odiase

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Uncharted Waters

“Life is uncharted territory. It reveals its story one moment at a time.
~ Leo Buscaglia”

The man sat on the end of his bed; in one hand, he held a revolver, and in the other hand, the bullets to put in the gun. He was having yet another horrific migraine attack, feeling that this would never end, he decided the only way to escape the pain, was through death. But before he could place the bullets in the chamber, they slipped out of his hand, dropping and rolling away from him. The sound of each bullet hitting the floor assaulted his ears and brain, all he could do was curl up in agony. He didn’t have the strength to find the bullets and complete what he had started to do.

I read this man’s accounting of this story many years ago when my migraine disease change from episodic to chronic. It was so poignant that it has remained with me all these years. I cannot stress enough that migraine disease is more than a headache, a headache does not drive one to want or sadly, take their own lives.

Due to the coronavirus, many of us living with migraine disease feel like we are in uncharted waters, as far as our healthcare is concerned. I know that I do. Please don’t lose hope, as things have been since the beginning of time, our civilization has overcome many different sicknesses. Polio, Bubonic Plague, Small Pox, and a few more, and we will make it through coronavirus as well.

Uncharted waters for me was feeling guilty or selfish about; my level of pain from both intractable migraine disease and fibromyalgia flares, when there are people dying from the coronavirus. The more I thought about it, I realized that I wasn’t selfish, because I wasn’t taking anything away from the treatment of those who are ill with the virus. I just need help from my headache specialist, but I’m having a very hard time getting that. Some of this is due to the clinic being closed, and the doctors not seeing patients. But the nurses are there handling emails and calls, with the doctors available to answer patient’s questions and concerns. I’m simply not getting any answers to my question.

My head pain level from the intractable migraine has not been below a seven since March fifth, and not below 8-9 since March twenty-seventh. Unfortunately, my fibromyalgia pain stays pretty much on the same level. To bring some perspective, I was discharged from the hospital on February twenty-ninth, after a six-day admission. An admission that was a total waste of time, since the Inpatient Attending Physician, basically threw out my usual treatment plan. Refusing to order the IV Steriods that I’ve been getting for a year and a half. DHE infusions do not work on its own anymore, adding the IV Steriods does the trick.

In less than a week, on March fifth, I was right back where I started from, only worse. I’ve developed an awful case of alloydonia on my scalp, that it is so painful that brushing my hair brings me to tears. It is also affecting the parts of my body where fibromyalgia is the most troublesome, giving my IM injections are extremely painful, this has never happened before. I can only wear the softest clothing against my body. And I’m getting Ice Pick Headache at least twice a week, I usually only get them three to five times a year.

The only response that I’ve gotten so far from my doctor is, “Sorry, but in our system, the inpatient attending is always in charge.” Well, I’m sorry too, because that is just not good enough. Their system is flawed, and who paid for that flaw? I did, and I continue to pay for it. The only way I can escape the pain is to sleep, what a life(rolling my eyes)! I told my doctor in an email,(that’s the only form of communication)that I am not living, I’m just existing. Who wants to live like that?

I refuse to let this matter drop, the Inpatient Attending was wrong, he refused to listen to me when I explained, that this medication was useful to me. He did NOT give me the best possible care. On top of that, he knew little if anything about headache medicine. I’ve given the clinic, the doctor, and the supervisor more than enough time to address this issue with me personally. And they have done nothing. Now I’m forced to write to both of the heads of the Neurology Clinic.

I’m tired of people living with migraine disease, being walked on like a doormat. We matter, our voice matters, migraine matters, our pain matters, we will no longer sit demurely in a corner, hiding our pain, those days are over! We are entitled to the best doctors, the best treatments, the best medications, and to be treated with respect and dignity. Not belittled and stigmatized by healthcare specialists when let’s face it, most of the time we know more about our migraine disease than they do. Because we make it our mission to know as much about the disease we live with, as we can possibly do!

“No thief, however skillful, can rob one of knowledge, and that is why knowledge is the best and safest treasure to acquire.”
~  L. Frank Baum

 

#Caturday Sugar

“What greater gift than the love of a cat.”
― Charles Dickens

You may be wondering why I’m writing about a cat on a migraine blog. Many people who live with migraine disease have pets; they bring us comfort and companionship. And for some dogs are their early warning system.  Pets are great for people with other types of chronic illnesses, as well. Studies have shown that ten minutes of petting a cat or dog can significantly lower cortisol levels, the stress hormone.*

Sugar has brought so much joy, laughter, comfort, and fun into our home. No, she never did grow into those long legs of hers, they’re a part of who she is. The same can be said of her long tail. When I hear my husband, Rick, talking and laughing at her as they walk down the hall, I smile, knowing that I made a good decision to adopt Sugar. Rick has been through some rough times in the past year. He lost his oldest son suddenly, last October, during the week before the funeral, Sugar followed him everywhere. When Rick would sit down in his recliner, Sugar, would drape herself across his lap and go to sleep. She knew he needed comfort.

Sugar has been very inquisitive since the day we brought her home and quite fearless in her pursuit of checking new things out. Water has always fascinated her, whether it be the toilet, bathroom sink, the shower, or taking a soak while you’re in it, of course. We’ve had to keep the toilet seat down once she discovered the water in it, or she would have dived right in.  Sugar doesn’t care at all for strange men. She disappears as quick as a wink. Our oldest son popped in one day with their newly adopted puppy, I use puppy in the very loosest of terms, while she was only four months old she was well on her way to becoming a horse. Sugar took one look at this monster and split not returning until well after they had left. Then she took one loop around the living room and decided the monster had contaminated her territory, then found the only spot in the living room that the puppy hadn’t touched and laid down there.  This lasted until the following day when she decided her cat condo was safe.

Oh yes, nothing gets by Miss Sugar. Nothing at all, she doesn’t miss a thing. She will sit and watch Belle while she’s up in Rick’s lap having her one on one time. Sugar watches closely how Rick pets her, likes she’s storing it away in her memory banks. Or she will get up on the very top of her cat condo and look out at her “kingdom,” though Queen Belle has disabused her of that idea. Sugar still likes to watch horses on TV, but only in black and white, not color. She’s so silly sometimes. One thing Sugar is very serious about is her treats. She and Belle get treats twice a day, in the morning and around dinner time. Dinner time is a breeze, Sugar hops up on a bar stool and waits patiently for her treats. But the morning treats are a whole different story, she thinks that she should have those at 5:00 am. To wake me up Sugar walks on me from feet to shoulder. She will repeat this until I get up and give the girls their treats. Sigh. Who needs sleep anyway? Ha! Actually to compensate for Sugar’s early wake up call I go to bed earlier. Living with chronic migraine disease I need to get the best possible sleep that I can. 

A rough migraine day is made easier when Sugar keeps me company. Sometimes she likes to get under the covers, and she has a subtle hint for that. She will tap her paw at the level of the cover she wants to go under. Then I lift the cover and under she goes. Just recently, on a horrible day, she slept underneath the cover cuddled up against my back for three hours, right along with me. Sugar can be silly, a stinker, going through the equivalent of the terrible two’s, but we still love her very much. She still hates getting her nails clip, I mean really hates it. I’m not hurting her, and I’m using clippers that make it impossible to clip too short. It takes less than three minutes and probably less than that if she wouldn’t fight against me. When I got home from my last hospital stay, her nails needed to be clipped in the worst way; she was getting caught in things when she walked. I felt so awful to do it then when I’d gone for a week. I wanted to cry, but it had to be done. I keep telling myself that it will get better. When I first started clipping Sugar’s nails, I tried bribing her with Cool Whip, she wasn’t interested in it. Next I tried Vanilla Greek Yogurt, boy did she like that, so much so, that I can’t eat a bowl of it now without Sugar trying to dip a paw in it! 

Sugar discovered the heat vent in the bathroom last year, she would stretch out in front of it like she was the Queen of Sheba. I told Rick she was going to have a rude awakening come summer when the air conditioning came on. Sugar is very vocal we’ve never had a cat that was as vocal she is. I happened to be in the bathroom when the heat came on for the first time, and Sugar was also in there. She let out a string of meows that could only be interpreted as “yay, yippee, yahoo,” has she dashed to the vent. It was hilarious! She has another thing that she likes to do in the bathroom. And that is hiding her “toys” under the rug, her toys are q-tips, twist ties, the rings off of the milk carton and candy wrappers. She picks the rug up with her teeth and uses her paws to slide her toys underneath. When she’s done, she then uses her paws to pat the rug down.

Yes, we’ve bought her toys, and Suger has them hide all over the house, every now and then she will bring one out. But for the most part, she loves playing with her unconventional toys. Sugar is also vocal when playing at first when she did this; I thought she needed something. Then I realized that she was talking to the toy she was playing with. One of her favorite games if playing with a q-tip on the bed, she’ll bat it around, all the while talking to it, bat it off the bed, jump down and get, then start all over again. It is never boring in our house, Sugar keeps us entertained, she’s been a blessing, comfort, joy, source of laughter, and love.

“There are two means of refuge from the misery of life — music and cats.”
― Albert Schweitzer

 

https://www.sciencealert.com/petting-a-cat-or-dog-for-just-ten-minutes-can-lower-your-stress-hormones-study-finds

Thing One And Thing Two

Let’s suppose that “The Cat In The Cat” was a migraine. He arrived on a rainy day, with promises of lots of fun and games. Within no time at all, he has wrecked the entire house. The fish keeps telling the children and The Cat, the he must leave. Instead of leaving, The Cat, opens a tiny box and out comes Thing One and Thing Two.

The Cat arrives on a rainy day, many people living with migraine disease, cite barometric pressure changes as one of their biggest triggers. I know that it is my biggest trigger and a very frustrating one, since I have no power over Mother Nature. Promising fun and games, that’s a good one. It sure doesn’t feel like any game I’ve ever played, while I’m worshiping at the porcelain throne. Or curled in a fetal position, with a heating pad on my stomach, trying to calm gastric distress. When my head pain is so intense, I really wonder. Could my head actually explode? Aphasia that lasts an entire day, making a simple conversation, sound as if you’re using, two tin cans and length of string to communicate. Being extremely photophobic I retreat to my cave(aka my bedroom), complete with room darkening shades and curtains. From my migraine toolbox, I can pull things that help me to be more comfortable. Ear plugs or noise cancelling headphones to block out any outside noise. A soft blanket, fans to keep me extra cool, I can’t tolerate being hot when I have an intense migraine. Medication set up and ready to use, lavender essential oil for my diffuser and even a bit of lavender linen mist, lightly misted on my pillow. The Cat often arrives and wrecks havoc on my days, but I have tools to get rid of him, though not totally. Due to the fact that I have intractable migraine, with a baseline of 4. I just started Aimovig last week, yahoo, I know that it can take at least three months, maybe longer, to see any changes. My next step is to see a doctor at the Pain Clinic, in the same building as my headache doctor, for trigger point and nerve blocks. I can’t give up and must keep looking for ways to help reduce my overall chronic pain. I have a secret weapon who won’t let me stop, she will keep on my tail, giving me a little push when need be. Thank goodness for friends that care enough, to give you that gentle nudge in the right direction.

Now for Thing One and Thing Two, they are depression and anxiety. When I’m in a long cycle of intense pain. I find myself feeling much more depressed, I refer to these times as “breakthrough depression”. It is during this time that I do not want to interact with people. Or as some have said, “I don’t feel like peopling today.”  That is okay, up to a point, when I cut myself off from people too long, that makes me feel even more depressed. Depression is a sneaky bugger, it can come out of nowhere and blindside you. Much like Thing One did, popping out of that tiny box and proceeded to turn everything upside down. If you are thinking, “this can’t happen to me, I’m on an antidepressant”, oh but it can. I’m on an antidepressant for clinical depression and have been for over three years, it doesn’t make you impervious to bouts of depression now and then. If you find yourself depressed and having a really rough time with it. Reach out to someone you trust and just talk, sharing with another person helps to lift and ease some off the load, that you’ve been carrying by yourself. If you’re not on an antidepressant, this would be a good time to reach out to your doctor, there is absolutely no shame, in seeking help for depression.

Thing Two anxiety, that voice that sometimes will just not shut up. Blah, blah, blah, on and on. Usually about the same thing, that I was sure that I had handled already. It was done and over, but evidently not to my anxiety. Then there are the panic attacks, those are a whole different animal. They don’t skedaddle very quickly, I use deep breathing exercises and make myself a cup of Chamomile tea. The act of making the tea, helps to center me, slows my breathing down. If these methods don’t work I have medication that I can use. But I always try the deep breathing exercises and tea first, they usually work for me. Some folks know what can trigger a panic attack for them, and are able to lower the number of attacks by avoiding those triggers.

 

“The sun did not shine. It was too wet to play. So we sat in the house. All that cold, cold, wet day.”  ― Dr. Seuss 

 

 

Photo: Storyblocks

 

 

Full-Frontal With Chronic Migraine

Full-frontal definition: Completely open and honest; candid.

Today is Chronic Migraine Awareness Day, nineteen years ago my migraine disease, turned from episodic to chronic, a stage that it still remains at today. In honor of this day, I am going to give you, a full-frontal of my life with chronic migraine. Completely open and honest, holding nothing back. It won’t be pretty, but chronic migraine isn’t at all attractive.

Let’s begin at the begin again, my life with migraine disease started going very wrong, when I developed Adult-Onset Asthma. I had been treating my episodic migraine very effectively with Propranolol for several years. Unfortunately, beta-blockers and Asthma do not mix and I had to stop the Propranolol. From that day forward I entered Chronic Migraine hell, for the last nineteen years I have not had a pain free day. I wrote about the stigma I encountered from doctors in those first few years. In a blog called, “Advocacy Beats Stigma”. Years that I felt like I was walking in total darkness, unable to find the help I desperately needed.

The first five months after going chronic were some of the most difficult I’ve ever encountered. I was in and out of the hospital, while inpatient I had consults with a Neurologist who prescribed medication, a psychiatrist who prescribed medications and my PCP who also prescribed medications. All in all, I went home with twenty-five different medications. It was a wonder that I knew my own name. I lost my job, our best friends moved away, our oldest son moved out to live on his own. I had a total hysterectomy, was diagnosed with fibromyalgia and became extremely depressed. When I did get out of bed, I sat huddled in the corner of the sofa. I began to have suicidal thoughts. I was in so much pain, physically and emotionally. I began to cut myself, it seemed that no one around me, even noticed how depressed I was. It was like I was a piece of furniture, as long as they had dinner to eat, everything was fine. This was my thoughts and feelings, not necessarily theirs and I now know that depression is a liar. It makes you feel, see, hear and believe things about yourself that just are not true! And my hormones were still out of whack from the hysterectomy.

When I actually made a plan to commit suicide, it scared me so badly that I called my PCP office. I spoke with the Nurse Practitioner, who I knew well, he was very kind and listened to me. He asked me if I was willing to go to the hospitals inpatient Mental Health Unit and I was. He called and set everything up, all I had to do was speak with the intake counselor and voluntarily admitted myself. That was the first step in the right direction, in my chronic migraine journey.  I’m so very happy I took that step and am still here today. Life is precious, despite Chronic Migraine.

It took over nine years to find the right doctor for me, he is not a headache specialist, he is a Neurologist with a subspecialty, in headache medicine, and a Head Professor Of Neurology. I use a teaching hospital and have never regretted doing so. I like to think that the residents that I see on their Neurology rotation, come away learning more about chronic migraine, than they may have. Some of the residents I have followed through their Neurology Internship, to being a full-fledged Neurologist.

I knew Dr. Burger was the right doctor for me when we started talking about preventatives and he wrote the name of three medications on a piece of paper and handed it to me. Asking, “Which of these three would you like to try?” YES! Not another doctor just telling me to take, this, this and this. But a doctor who was willing to work with me on my treatment plan. Now I was getting somewhere. No, my migraine disease didn’t disappear overnight. It’s still a work in progress, I have many, many allergies that make treating my Chronic Migraine challenging, as well as other comorbidities, such as Fibromyalgia and Degenerative Disc Disease. Along with Clinical Depression and Anxiety, Dr. Burger has never given up on me, in fact, he treats all of my comorbidities, except for the DDD.

I have times that I struggle badly, with status or intractable migraine, I’m usually in a fibromyalgia flare as well. During long cycles of migraine, I get what I call “breakthrough” depression. I retreat to my cave, needing the quiet and the dark. I don’t feel much like peopling either. Whether it’s on Facebook, Twitter or in person, I just want to be left alone. During intense pain I have had nightmares, waking myself up, crying, kicking and punching, I can tell you these are rude awakenings for my husband.

For a little over a week now, I have been in a very bad struggle. We’ve had severe, intense thunderstorms, for one period they lasted for three days straight. Then on and off again. With barometric pressure changes being my biggest trigger and the storms containing lightening. This has really knocked me out, my head pain has been very high, as has my body pain from fibromyalgia flare. The only way I’ve been able to get any relief is when I’m able to sleep. Dang it, I’m sick of sleeping my life away! I’ve been extremely nauseous, along with gastric distress, this is very debilitating for me. I get horrible stomach cramps.  Eating is hit and miss, mostly miss. I have been able to tolerate Vanilla Greek Yogurt, peppermint tea, and other fluids.

My nerves feel like they are on the outside of my body, so much so, that I do not want to be touched. For fear that I might fly apart in a million pieces.  My mood is all over the place, sometimes I just want to sit down on the floor and cry. I feel hopeless and defeated.  And wonder, how much more of this can I take? I’m so utterly exhausted, even though sleep is the only way I can escape the pain. A lot of this is depression and anxiety-related, and depression talking, depression never gives pep talks, always the opposite.

Do you know what keeps me going? What won’t let me accept defeat or hopelessness? Why I won’t let Chronic Migraine win? Something that is more precious to me, than anything in the world. If a picture could paint a thousand words ~

I love this bunch to the moon and back!

 

 

 

 

My Disease Is Invisible I Am Not

“When you have an invisible disease, your sickness isn’t your biggest problem. What you end up battling more than anything else, every single day, is other people.”
― Heidi Cullinan

I live with an invisible disease every day of my life, it goes where I go, eats when I do, or can’t, sleeps when I do or don’t, is with me when I’m in pain, when I’m nauseous and vomiting, when I retreat to the dark and quiet place. It’s with me when I have cancel outings or family gatherings, it feels my despair and sadness at having to do so. And the loneliness and isolation that descends upon me, the times that hopelessness creeps in. You see my invisible disease is chronic migraine, it is always with me. It cares not that I have to cancel plans, or suffer pain, nausea, vomiting, stomach cramps, diarrhea, aphasia, alloydonia, sensitivity to light and sound, feel isolated and alone. It is just doing its job.

Chronic Migraine is an invisible disease, no one looking at me can say, “Ah yes, poor thing she has chronic migraine.” My disease may be invisible, but I am not. I have the same hopes and dreams, that every other well person has. I would love to get up every morning without pain. To be able to fully embrace the day, with no worry of impending worsening of pain. To make plans weeks and months ahead, without the caveat of migraine.  To be the person I once was, chronic migraine has changed me in so many ways. I lost the “old me” nineteen years ago when I became chronic. Medications and constant pain can do this to a person, I had to find a new normal. I am not invisible.

These are words I long to never hear again. But you don’t look sick, Ha, that’s because you don’t know how to read migraine eyes. Your pain level can’t be that high, doctor you need to learn more about chronic pain and how those who live with it everyday, handle it! It’s just a headache take an Advil, would you like me to knock you upside the head with an iron skillet. Then tell you it’s just a little bump, take an Advil? It’s just a woman’s thing, they’ll stop when you hit menopause. Right, and the Easter Bunny is real too! You’re just faking it to get attention. Sure, I love puking my guts out, the feeling of having my head pounded on by a hammer, light searing my eyes like acid, the sound of a pin drop like a gong, my speech garbled, horrid stomach cramps and having to hide in a dark, quiet room. I am not invisible.

Yes, my disease is invisible, but follow me around for a few days, I am not invisible. You will see the signs of my disease, they are not pretty, some of them are even a bit scary. You will see right away, that this is a disease that you would not want to live with every single day of your life. I have no choice, I was born with it, it’s in my DNA. But I strive everyday to live the best possible life with migraine disease that I can. I work closely with my headache doctor to form a treatment plan. My husband is extremely supportive, always has been, and I know that he will always be there for me. Just as I always be there for him. I have a strong support group online in the migraine community and some ties that are as close as sisters. I try very hard to be supportive, caring, encouraging and inspiring to others with migraine disease. I. Am. Not. Invisible.

“There is no exercise better for the heart than reaching down and lifting people up.”
― John Holmes

Live with hope,
Roni

Advocacy Beats Stigma

 

“Stigma is a process by which the reaction of others spoils normal identity.”
Quote ~ Erving Goffman

In the last few years, I haven’t encountered much stigma, and to be fair, I don’t work outside the home. Due to the high levels of head pain and other migraine symptoms, I don’t even leave my house very much. But when I stopped and thought about it, I encountered a boatload of stigma, when my migraine change from episodic to chronic. My episodic migraine was controlled very well with a beta-blocker, Propranolol, for many years. I didn’t require an abortive medication. At that time, I hadn’t even heard of abortives or rescue medications. My education in migraine disease was sorely lacking. I had to stop the Propranolol when developing Adult-Onset Asthma, beta-blockers, and Asthma are not friends. After halting the Propranolol, I entered Chronic Daily Migraine hell, where I remain nineteen years later. 

This is when I encountered stigma and remember my migraine disease education was practically nil at this time. Let me list a few situations where stigma played a big part, and I just wasn’t aware of it at the time.

1. In the workplace, I was working in a Family Practice Clinic staffed by three doctors and owned by the hospital that I had worked for since I was sixteen. These were doctors, and they should have been concerned, caring, and compassionate for a co-worker who was so ill. None of that happened. They tried to fire me while I was in the hospital. Human Resources told them that they couldn’t do this. So they devised another plan and had it all in place the day I came back to work. My orders were to report to the Office Manager at the end of the day and give her an accounting of the tasks I had completed that day. They couldn’t fire me due to my illness, but they could fire me if I were deemed incompetent of doing my job. The first two days I couldn’t find the office manager anywhere in the clinic, when pulled into a meeting the next morning, and asked why I hadn’t checked in with the office manager. I told them that I had been unable to find her, to which she replied, she had been in her office. She flat out lied. They fired me because of this; I was devastated. A small side note: One of the doctors was extremely unkind to me. Since that time I discovered, he started having migraine; I wouldn’t wish this on anyone. (but might I say Karma is a bitch) Had an affair with his office nurse, the other two doctors bailed on him, and he is no longer working for that hospital system, he is now the doctor at our local Women’s Correctional Facility.
2. My PCP at the time, I believe, didn’t know what to do with me anymore. Started getting rather snippy with me. He put a note in my patient chart saying; I was a “possible drug seeker.” While he was the one who started giving me the shots of Demerol, which helped. If you’re getting something that helps your pain, wouldn’t you ask for it when you’re in pain again? Of course, now I know that opioids are not the right treatment for migraine. I was forced to get a new doctor.
3. An ER doctor told me it was my fault that it took so much pain medication to resolve my pain. As a side note, I never go to the ER for a migraine attack any longer. The treatment plans my head specialist, and I have worked together on, gives me the tools I need to use at home. 
4. The first six months after I went chronic where horrible. I lost my job and was diagnosed with fibromyalgia three months later. When I asked my PCP if there was medication or treatment to help with fibromyalgia, his reply was to take hot showers. (this was the PCP whom I ended up firing) I also had a total hysterectomy, our best friends moved away, and our oldest son moved out. I was in so much pain, with no help or hope on the horizon. I became extremely depressed, when I did make it out of bed, I would sit huddled in a chair. I began having suicidal thoughts. When I made a plan, that scared me to my toes! I called my doctor’s office right away. And voluntarily admitted myself to our local Mental Health hospital wing, this was the best thing I ever did for myself.
5. I’ve had doctors tell me that I was too complicated for them. One Neurologist practically killed me. By stopping all the medication that I was on, including an MAOI, which is supposed to be weaned off of and started three new ones. For the first week, I thought I was going mad, and my mood was all over the place from extremely mad to crying over nothing. After six months, he didn’t know what to do with me either; he started me on Ritalin as a hail Mary, his words. I tried a couple of doses of the Ritalin; they made me feel like my heart was going to jump out of my chest. He didn’t set up a return visit after starting me on the Ritalin. Then dropped me as a patient without notifying me. In the six months that I saw him, I lost forty-five pounds, because I was unable to eat.
6. My new PCP wouldn’t listen to me when I told him I was over-medicated; he being the doctor, thought he knew more than I did, about the way I felt. He was wrong. He had put me on both Vicodin and Duragesic Patch. I could barely function. I weaned my off of the Vicodin, got a new PCP who helped me wean off the Duragesic. I could finally see the world clearly, no more lost days or entire weeks. I did what was best for me.
7. Recently while in the hospital, a doctor who was assisting with a procedure told me that he would have a hard time believing me if I told him my pain level was nine. Too many doctors don’t understand chronic pain patients and the way I and others deal with it. 

Did you notice that all the stigma I faced was from healthcare providers? Not one person in my family has ever made feel, less than a whole person, or guilty if I’m unable to make it to a family function. They are the best! My sons have always been supportive also. My husband has never made me feel like I am not a good wife. He will not allow me to talk about feeling guilty; he tells me I have nothing to feel guilty for. I didn’t ask for a life with chronic migraine. 

Almost every one of these situations could have been handled better on my part if I’d educated myself more about migraine disease. It is my responsibility to educate myself. Then when faced with stigma such as these, I’m able to advocate for myself, speak up when I believe a doctor is doing something that is not correct, like having all my medications stopped abruptly, especially the MAOI, or being started on Ritalin. In the case of being over-medicated, I did advocate for myself, even if it meant finding a new doctor. The more I know about migraine disease, the more I can advocate for myself and get a better treatment plan by working with my current doctor, which I’ve done since day one. By advocating for myself and others living with migraine disease, I’m sowing seeds of knowledge, hope, encouragement, caring, support, and beating back stigma. 

“If you have a voice, use it
If you have legs, stand up.
If you have feet, step up.
If you have each other, fight together.”
Quote ― Janna Cachola

 

*Stock picture: Storyblocks

 

 

 

Up The Hill

“ Speech has power. Words do not fade. What starts out as a sound, ends in a deed.”  ~  Abraham Joshua Herschel

How approprate for Headache On The Hill, our words have power they do not fade. They may start as a small sound, but end in a deed. This in a nutshell is what we do at Headache On The Hill. We use our voices to explain what living with migraine is like, then we are able to put forth the ask or “deed” we wish of our legislator’s.

Yes, we could just put all the information and details for our asks, we had two this year, have it delivered to every legislator in all 50 states. That would miss one very important thing, our voices. How can we ask them to care about allotting more funding  from the HEAL Initiative to Headache disorders, when they may not know anything about migraine. Or the statics of migraine disease and headache disorders, migraine is the second leading cause of all global disability. Migraine disease and headache disorder currently receive 0.6% of the $500 million dollars Congress appropriated for the HEAL Initiative, which is for opioid and pain research.

They heard my personal stories, the battles I fought, some I have won some not. The debilitating pain, days to weeks spent in a quiet dark room, missing family events, losing my job of 27 years, losing friends, longing for my old life before chronic migraine became a part of it. Multiple doctor visits, inpatient hospital stays, the many different medication I’ve tried, implanted devices to help with pain, but failed. The feeling of guilt when I lost my job and could no longer contribute to the family budget. And how realized I was when I was approved for SSDI.  This you cannot get in a letter, you must tell it face to face. When our asks are brought forward they will remember each of our faces and our stories.

They will also remember us when our second ask is brought forward, to reform Social Security Administration Evaluation of Americans disabled by Migraine and Headache disorder. Currently the Blue Book contains no listing for any Headache disorder. Remember Migraine is the second leading cause of all global disability. As it stands those with migraine and headache are told to compare their impairments to the listing for epilepsy! Say What! We are asking for a reform of the SSA Blue Book for fair adjudication of headache disorder claims. This is a very important ask, so many living with migraine and headache disorders, are unable to work and filing for SSDI can be a nightmare. With headache disorders added to the Blue Book, the process should be somewhat easier.

This was my first Headache on The Hill, I still didn’t have my strength back after being in the hospital eight days. Then I picked upped a stomach bug on the flight over, I was in pain the entire time. But I’m already looking forward to next year, this was such empowering experience. Feeling like I made a difference for the whole migraine community, not just myself. To be in a room filled with over 170 people just like me and they were there because they cared. Seeing so many of my migraine sisters and getting real vs virtual hugs. The whole process was amazing and I couldn’t have gotten through the day without Darby O’Donnell. She was my sidekick as I was the only person from Missouri, Darby used to work for Senator Kit Bond, who ironically is from my home town.

Live with hope,
Roni

The Perfect Storm

Life with migraine disease is not for the faint at heart, the very nature of this disease is such that you must don the cape of courage and fight like warriors of old. Many of us with migraine disease, also have comorbidities, other diseases or disorders that can directly or indirectly affect the way we treat these diseases, as well as migraine. As you may get an inkling, this is no small task.

As with migraine disease, our comorbidities may have triggers of their own, certain physical activities, changes in weather, that cause a flare and increase pain. Some of these disease can be so painful at times bed rest is actually needed to help calm oversensitive nerves. It’s really important to try to understand that, when a person who is living migraine, or chronic migraine, along with a chronic pain disorder, their lives are extremely difficult. And they often feel very alone.

Feeling alone is my next topic. With chronic pain disorders, migraine disease and comorbidities. Many of us, myself included have various levels of depression and anxiety. I have clinical depression, which is heredity, from my maternal side of the family. I take daily medication for both depression and anxiety, medication in itself is not a cure-all, at least I don’t believe it to be. I use mediation, biofeedback, calming techniques, the Calm App and mindfulness to help control breakthrough feelings of depression and panic attacks. The simple process of making myself of cup of Camomile tea ia calming. My oldest friend is a weapon, books, reading helps to take my mind off of depressive thoughts and corral anxiety. For how else can you escape reality for a bit than through a book, into the world of mystery, adventure, love and history?

All of that being said, I do have times despite my best efforts, when I have breakthrough depression. These times usually come when I’m in an intractable migraine and fibromyalgia flare, that has been active for some time. It becomes the perfect storm! My head and body pain is horribly high. Stomach distress begins to kick in, awful cramps soon followed by diarrhea. I become extremely crabby, which is not my normal personality, on days like this I stay in my cave, my husband doesn’t deserve to be the target of my moods. Depression starts to creep in, telling me things such as; get over yourself, no one cares about you anyway, who are you trying to kid, you’re all  your own sucker. Why don’t you just do everyone a favor and disappear from Facebook and Twitter. How can you look at yourself in the mirror? You’re fat and ugly nobody would want to be your friend if they really knew how you looked. Then comes the feelings of being so overwhelmed/anxious  by the smallest everyday activities, to the point that I want nothing more but to stay in bed with the covers over my head. I don’t want to talk to, see, interact with people, leave my house, zip nada!

This is my Perfect Storm! 

The wind is slowly starting to change direction and blow this Perfect Storm away, it won’t happen overnight, but it will happen. Each one of us living with migraine disease have the makings of a perfect storm in our lives. Please take my example and don’t let it get beyond your capabilities to deal with it on your own. Seek help, there is absolutely no shame in doing so. No matter what your mind might tell you, YOU ARE NEVER ALONE! 

 

Live with hope,
Roni

 

Photo stock: Storyblocks

Twas Days After Christmas: A Spoonie Tale

‘Twas days after Christmas, wrapping paper, bows and boxes are strewn all through the house. I had just laid down with visions of sleeping, until Spring arrived again.

When out in the driveway there arose such a clatter,
I moved as quickly as I could from the bed to see what was the matter.
To the window I went and to wondering eyes I saw, “A Maid For You” van, driven by Santa Claus! Yes Virginia, there is a Santa Claus! 

Santa with eyes that twinkle! Dimples merry, 
cheeks like roses, nose like a cherry!
His little mouth drawn up like a bow. And his beard was as white as the snow; He had a broad face and a little round belly,
That shook, when he laughed like a bowlful of jelly.
He was chubby and plump, a right jolly old elf. 

Being Santa he knows the struggles of migraine, chronic pain and spoonies everywhere, as well as our tendency to overextend ourselves during the holidays. Even if we don’t overextend ourselves, the added activities and stress of trying to appear “normal”, takes a toll on us. We need time for our bodies to recuperate and stop fighting against us, we are in no way lazy, but are trying to survive with the diseases we were given. We quickly use up or spoons, so when all of the festivities are over, we are left feeling utterly wiped out. With no energy to deal with the mess left over from Christmas, personally all I’ve want to do is sleep, hoping this will help make the beast go away. Unfortunately this hasn’t worked, the migraine and fibromyalgia flare are still here. 

Santa’s gift of “A Maid For You” is like manna from heaven! Too bad this is a fictional part of my story. Every spoonie I know would love such a gift. My advice to you, don’t be so hard on yourself, guilt has no place here, if you need help ask for it, get comfortable with saying no, when decorating do only what you have the energy for, shop online thus avoiding possible triggers. I receive so much joy from giving gifts to my family and my migraine sisters. Shopping online allows me to find that perfect gift for each person. Make sure that you have spoons left to enjoy spending time with your family, that is more important than a beautifully decorated house. 

Wishing you and yours a Happy and Healthy New Year!

“Tomorrow, is the first blank page of a 365 page book. Write a good one.”
― Brad Paisley 

Live with hope,
Roni

 

Stock picture: Storyblocks