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My Hopeful Brain

By Roni Jones

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 on twenty-five different medications. It was a wonder that I even 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 set 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. Plus 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 person 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 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 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 over night. 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 my 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 ~

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I love this bunch to the moon and back!

I continue to live with hope,
Roni

 

 

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

To be honest, in the last few years I haven’t really encountered much stigma and to be fair, I don’t work outside the home. Due to the high levels of head pain and other migriane syptoms, I don’t even leave my house very much. But when I stopped and thought about it, I encountered a boat load 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 stopping the Propranolol I entered Chronic Daily Migraine hell, where I still 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 situation where stigma played a big part, 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, they should be caring of a co-worker who was so ill, right? Wrong! They actually 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. Basically I was to report to the Office Manager at the end of my shift everyday and give an accounting of what I had accomplished that day. They couldn’t fire me due to my illness, but they could fire me if I was 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. Needless to say 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. (might I say Karma is a bitch) Had an affair with his office nurse, the other two doctors bailed on him, 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 just didn’t know what to do with me anymore. And 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 your 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.
  4. The first six months after I went chronic where horrible. I lost my job, had also been diagnosed with fibromyalgia, when I asked my PCP if there was a medication to help with this. His reply was to take hot showers. (this was the PCP whom I had recently fired) I also had a totally 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 actually 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 who practically killed me. By stopping all the medication that I was on, including a MAOI, which is supposed to be weaned off of and started three new ones. For the first week I thought I was going mad, 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 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, evidently he, being the doctor, thought he knew more than I did, about the way I felt. He was totally wrong. He had put me on both, Vicodin and Duargesic 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 doctors? 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 son’s 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.
Almost every one of these situations could have been handled better on my part, if I was more educated about migraine disease. It is my responsibility to educated 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 my doctor, which I’ve done since day one. By advocating for myself and other 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 eachother, fight together.”
Quote ― Janna Cachola

Live with hope,
Roni

*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

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The Perfect Storm

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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

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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 

Mr. Grinch Was A Migraine

christ3You’re a mean one, Mr. GrinchOh yes, Migraine is very mean indeed there is not one little thing nice to be said about Migraine. Not one. Well I guess this is not exactly true, I have met some very lovely and amazing people on my Migraine journey, warriors who have become like family to me. 

You’re a monster, Mr. Grinch, Your brain is full of spiders; Migraine is not only mean it is a monster, one who can take over our lives and become totally debilitating. Leaving us with horrid head pain(spiders), light and sound sensitivity, aphasia, dizziness, gastrointestinal distress and worst of all take us from our families. 

You’re a vile one, Mr. Grinch
You’re a nasty wasty skunk
The three words that best describe you are as follows, and I quote
“Stink, stank, stunk”!;
Migraine disease does not discriminate its reach is long, to include the child, as well as the elder. Coming in many different forms, all of them as nasty and vile to live with as the next. Each with their own symptoms, just like each of us have our own triggers and they all, I quote “Stink, stank, stunk”! 

You nauseate me, Mr. Grinch
With a nauseous super “naus”!
You’re a three-decker sauerkraut and toadstool sandwich with arsenic sauce!; 
Nausea one of the most dreaded of Migraine symptoms and smells are one the most horrible of Migraine triggers, once you step outside of your smell safe zone, all bets are off. I have at least one Migraine friend, who would get dreadfully ill at the whiff of a sauerkraut and toadstool sandwichActually the thought of it rather turns my stomach. 

“How The Grinch Stole Christmas” has always been one of my favorite Christmas movies and “You’re A Mean One, Mr. Grinch” a favorite song. It wasn’t until I was thinking about using the Grinch in a different approach, that I realized how much the lyrics rang the Migraine bells for me. I hope that you enjoyed reading this, as much as I enjoyed writing it! I wish you many “Mr. Grinch” free days between now and Christmas! 

Live with hope,
Roni

 

“You’re A Mean One, Mr. Grinch”
Written by Dr. Seuss, Composed by Albert Hague

Stock credit: Storyblocks

Tale Of The Naughty Spoonie

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There once was a spoonie who had much to do

She worked and worked days and nights too

All the while forgetting about her spoon supply

When her work was almost completed she found herself depleted

A trip to the cupboard found it bare

No more spoons where there

As much as I hate to admit it this was me for the whole of the past week. There was so much that needed done. We had our carpets cleaned on Tuesday, so the house had to be decluttered, which it sorely needed. We put our Christmas Tree and other decorations up on Wednesday, so the boys could enjoy it for Thanksgiving. Then finished putting away all of the boxes Friday morning. 

We went to my brother’s house for Thanksgiving on Thursday, (which is our custom)and had a great time. I saw my younger brother sober, from both drugs and alcohol for the first time in years. That was something to be very thankful for! I wasn’t able to stay as long as I would have liked, due to a migraine and my family is very loud. Always have been and always will be, at least I was able to make it there this year. Another reason to be thankful for. 

By the time I got home I could hardly walk, due to low back pain from degenerative disc disease, that flares up now and then, especially when I’m on my feet to long, or have been doing too much. I was also in a severe fibromyalgia flare on top of a horrid migraine. Talk about a triple whammy! Rick rubbed some wonderful CBD Lotion, (a very kind and amazing friend sent me)on the worst pain areas and I went to bed at 7:15. 

We always have our immediate family Thanksgiving on the Friday following Thanksgiving. I woke up in a lot of pain and the thunderstorms we had all day sure didn’t help. I was so angry with myself for overdoing and not being at my best while my son’s were here. I love every moment I get to spend with them. As I should have known they both understood, as did the rest of our crew, everyone jumped in and the meal came together perfectly. That is something else to be thankful for! 

I’m still in a lot of pain today, but I learned a valuable lesson, don’t use up all of my spoons for the week in about two days. If I do I’m going to be in for a world of pain! I like the spoons pictured above, they are not empty spoons, they’re filled with spices. We not only need spoons to live our chronic life, we also need some spice, life without spice is very dull. This is me, back on track living a spicy spoonie life!

Hmmm, since I’ve been naughty I wonder if Santa will still bring me a gift? 

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Live with hope,
Roni

 

Stock credit: Storyblocks

 

 

 

I’ve Got Plenty To Be Thankful For

thankyou2“You simply will not be the same person two months from now after consciously giving thanks each day for the abundance that exists in your life. And you will have set in motion an ancient spiritual law: the more you have and are grateful for, the more will be given you”
― Sarah Ban Breathnack

This melody has been going through my mind the last couple of days, “I’ve got plenty to be thankful for”. It’s the line of a song from a classic movie, starring Bing Crosby, Fred Astaire and Ginger Rodgers, ‘Holiday Inn’. I love the classic black and white movies. Despite migraine and chronic pain, I still have plenty to be thankful for. 

I have a wonderful, supportive husband, a loving family, who cares and gets me. Terrific friends in the migraine community, who are always there with words of support and encouragement. Via text, Messenger, phone calls, lovely cards in the mail and I keep everyone them in my keepsake box. Feeling all that love gives me the strength to carry on in my journey, one day at time. That is how I live while on this journey with migraine and chronic pain, one day at a time. 

I have found that if I try to look too far down the road anxiety sets in. Because I am then dreaming of the day I’m cured of migraine and all the wonderful things I could do again.  That is a great dream for sure, but dreaming too big can lead to disappointment and then to losing hope. I’m very grateful for the hope that I’ve been able to keep burning inside of me. To lose that hope would be a catastrophe of a magnitude I cannot imagine.

Many, many times a year, I receive a blessing of some kind from either my migraine family or my physical family. These blessings mean the world to me, because they were given from an open and caring heart. Building up thankfulness upon, thankfulness in my heart. Have you a story to tell of receiving a blessing just when you needed it, that you are thankful for? Please leave your story in the comments, everyone loves to hear uplifting stories like these. Wishing all of my readers a very Happy Thanksgiving! 

“Life without thankfulness is devoid of love and passion. Hope without thankfulness is lacking in fine perception. Faith without thankfulness lacks strength and fortitude. Every virtue divorced from thankfulness is maimed and limps along the spiritual road.”
― John Henry Jowett 

Live with hope,
Roni

Photo credit ~ Story Blocks

 

 

Even Warriors Need To Rest

“As important as it is to have a plan for doing work, it is perhaps more important to have a plan for rest, relaxation, self-care, and sleep.”
― Akiroq Brost 

I recently took a week-long break from Facebook, no I didn’t have withdrawal symptoms, or cravings to get back on before my week was up! Instead I spent those hours and yes, time spent on social media, can easily add up to hours a day, reading, playing with my new kitty Sugar, having actual conversations with my husband, Rick and generally just letting myself breathe and relax. The last couple of weeks before this had been very stressful for our family. Rick’s oldest son, age 39, died unexpected and under suspicious circumstance. Though I wasn’t close to Kyle, he was Rick’s son and Rick needed my full support. If you are a spoonie, you can see how this situation quickly depleted my daily allotment of spoons. A week of self-care was sorely needed and did me a world of good. 

Now I want to talk about another reason we Migraine warriors need rest. For a very long time I was under the assumption that, letting people know you took a cave day, was the same as admitting defeat. Migraine Warriors are tough, they don’t let a pesky Migraine keep them from living their life, they power through, grocery shopping, cleaning, cooking and keep up with their exercise routine. When I read accounts like these, I thought to myself, what am I doing wrong? During a Migraine attack I don’t even want to see sunlight, my head is staying on my pillow with an ice pack and the only exercise I’ll be doing is the trips to the bathroom to vomit or deal with diarrhea! Believe it our not there is stigma placed on us by our peers, though they may not realize that they are doing so. 

Recently I had an epiphany after reading two blog posts about rest, it completely changed my mindset on the need to rest and still be a Migraine warrior. First rest isn’t a naughty four letter word, it is a necessity for our bodies that battle pain 24/7. I have days that fatigue literally drains me and I feel like I’m walking in wet sand. Living with Migraine and chronic pain can drain your internal battery pretty darn fast. So it stands to reason that one will have to recharge, this is where rest comes in. Grab a cup of tea and a good book, or take a nap. Your body will tell you when it is fulling charged. There is no guilt here, would you feel guilty if you were tired due to cancer treatment? NO you would not! You are still very much a warrior, just a tried one and why not? Fighting against Migraine everyday is very hard work, both physically and mentally! 

If a Migraine attack is severe enough for you to need a dark quiet space use your cave. Again there is no guilt here, your body and brain needs rest and treatment. It is better to try to nip that Migraine attack in the bud, rather than pushing through it and avoiding the  possibility of a longer Migraine cycle. Don’t let the fear of stigma keep you from speaking about your Migraine, you don’t have to go into detail. Yes, speak you Migraine, the more advocacy efforts the less stigma. Shame on anyone in the Migraine community who would make a fellow Migraineur, feeling less of a warrior, if they need a rest, self-care or cave day. We should strive to thrive and by being a supportive and encouraging Migraine warrior, you are helping a fellow Migraine warrior thrive.

I came across this description of a Woman Warrior, while looking for the best definition of warrior. It really spoke to me!

“Women warriors possess a determined spirit, a “can do” attitude that drives their actions towards their goals. When faced with limitations, disappointment or opposition, a warrior woman only gets more determined to make what she envisions happen. She won’t take “no” for an answer and will find a way barrel through obstacles until that “no” becomes a “yes!”

I know many Women Warriors who fit this description when it comes to their Migraine treatment. They are not willing to sit back and do nothing, because one, two, three or six, treatments didn’t work. They keep pushing, advocating for themselves to try more treatments, whether they be infusion or oral. They will not hear “no” or there is nothing more we can do. No way! They will keep looking, researching, never giving up. That is a Migraine warrior! 

Live with hope,
Roni

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Sugar in Dive mode! lol 5 months old & we love her to pieces! 

 

 

**Dedicated to:  Angie Glaser who taught me about the concept of rest and to never be ashamed of it. You inspire me Angie with your strength, openness to speak your mind, loyalty to your friends and willingness to speak for the migraine community! 

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