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My Hopeful Brain

By Roni Jones

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! 

Top-Secret

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There’s something about the words top-secret stamped across a file, that invokes a visceral response, we want to know what is in the file. We can’t help ourselves, it’s a wholly human response. Sort of like kittens and their unlimited curiosity, something that I have had a lot of experience with the last couple of months! So why are we so secretive about our pain?

For many years life with chronic migraine and fibromyalgia for me meant, living in isolation, fear of the unknown, symptoms that were frightening and I didn’t understand, darkness, unrelenting pain, stigma of having both the diseases I was now living with being so misunderstood. Sadly it wasn’t family or friends who didn’t understand my chronic illnesses it was my doctor. At that time I wasn’t as knowledgeable about my chronic illnesses as I am now. My doctor made me feel guilty about my pain, accusing me of being a drug seeker, when my husband ask about seeing a headache specialist out-of-state, he told us that wasn’t necessary as my condition didn’t warrant it. Through a series of events that I have blogged about before, I bid that doctor adios and indeed saw the headache specialist out-of-state. Where I finally began to become more knowledgeable about my chronic illness and that was empowering!

Another thing that I have learned that can be empowering is to share your pain with others who are on the same journey you are. For far too long we have hidden our pain because we were afraid of the stigma attached to migraine and other chronic pain conditions. I think that the time for hiding is over no more putting our pain behind a top-secret stamp and filing it away. I think that the Elle magazine #migrainepose furor showed that many migraineurs are more than willing to be heard. A big part of advocating for yourself and others is being open about your pain. How can we talk about caring for the chronic pain patient and the opioid crisis if we never share our own experiences with pain?

The journey with chronic pain is a daily struggle, but I meet each day with hope, that today will not be a high pain day, with thankfulness, for my supportive husband and migraine warrior sister’s, with knowledge, if it is a high pain day I have the skills to deal with it and with empowerment, hoping that the pain I share can help someone else that day. The top-secret stamp has been thrown in the trash!

 

Live with hope,

Roni

 

The Monster Within

“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 

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There is a Monster that lives inside of me, it cannot be seen, but can be felt. This Monster makes his presence known on his time schedule. He loves to come out when it rains, storms, snows or the barometric pressure changes. He can be sneaky and use other people and places as his emissary, too much perfume or strong smells, to let him in.

Make plans to go out with friends or family and the Monster is sure to show up to ruin those. Instead of having a good time, you find yourself lying in a dark room, curled in a fetal position, ice packs on your raging head, trying so very hard not to vomit. Can’t someone make the room stop spinning? My stomach is cramping so badly, diarrhea is not far away, the heating pad becomes my friend. Food does not. The Monster just laughs and laughs, for he is in charge right now. Sometimes the Monster stays in charge for days on end, they days turn into weeks, then into months and years. Before you realize it the Monster has stolen two years of your life. 

Life becomes almost unbearable, depression and anxiety become best friends with the Monster. They work together at making sure you don’t have any strength to fight back against the Monster. I begin to have nightmares about pain, awaking crying, screaming, punching and kicking. The Monster has taken over my waking and sleeping moments, there seems to be no escape.

Well meaning family and friends, make suggestions about cures that worked for their cousins, aunt by marriage twice removed, daughter. These just make me tired of having to explain there is no cure for the Monster.

When I think that I’m at the end of my rope and just can’t do this anymore, that I’m losing hope. One of my sweet friends will contact me, sending messages of hope, inspiration, support and love! These acts of kindness, caring and sharing, will take the sting out of the Monster. And renew my hope again. If you hadn’t already guessed the Monster has a name, Migraine. I will never stop fighting against it, nor will I ever let it steal two years of my life again! Migraine does not own me, it just happens to be a disease I was born with. I will continue to use everything available in my tool box, to live the best possible life with migraine that I can! As well as, being a source of support, encouragement, inspiration and hope, to my fellow migraine warriors.

“Step into my shoes follow my journey, my mountains, my valleys, my surprise potholes & if  you keep going the way, I keep going, perhaps you’ll understand my choices & strength.” ~ Karen Salmansohn

Live with hope,

Roni

 

 

Photo credit: Storyblocks

The Painful Truth of Pain

“You may encounter many defeats, but you must not be defeated. Please remember that your difficulties do not define you. They simply strengthen your ability to overcome.”

~ Maya Angelou

 

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September is Pain Awareness Month and I am extending an invitation, to join me on my journey navigating chronic pain. Let me first warn you that, this blog will be longer than my usual blogs and some of the things that I discuss are not at all pretty. But to make this an accurate accounting of my pain journey, I can’t leave anything out.

I’ve had migraine disease since I was 16 years old, episodic and treated well with Propranolol for many years. Then as life often does, it threw a curve ball in the form of Adult Onset Asthma. I did okay for a couple of years with inhalers and was able to stay on the Propranolol. Until I started having more asthma attacks and being hospitalized, at this point my doctor took me off of the Propranolol. We tried a couple of different beta blockers, but I couldn’t tolerate them and breathing is kind of important. 

It was at this time that everything went to hell in a hand basket. My migraine became uncontrollable, this was seventeen years ago and I knew virtually nothing about migraine, except that it caused my head to feel like it could explode and I vomited all the time. The first thing my Internal Medicine Doctor did was treat the pain with Demerol injections. Nothing was mentioned about a preventive to take daily, so when I would get another horrid migraine I would call his office and ask about a pain shot. Next thing I know my doctor was talking about me being a drug seeker. When it was he who started giving me the Demerol for pain! 

On top of all of this, the doctor’s office I was working for tried to fire me while I was in the hospital. The head of Human Resources let them know that they could not do that. The Family Practice Clinic I was working in, was owned by the hospital that I started working for when I was 16. To make a long story short, they found another way to fire me. When I was discharged from the hospital that last time, before going back to work, I had seen three different doctors as consults. Between all these doctors, I left being on twenty-three different medications. Yes twenty-three, that was not a typo! It’s a wonder I knew which way was up!

They used the excuse that I wasn’t doing my job properly, not because of my illness, but because I was overmedicated. Move along now, you’re defective you can’t do your job properly, as for the 21 years you’ve worked for this hospital, they don’t mean crap! The many times that I had worked a double shift, in a department because someone called in. My loyalty to the hospital counted for nothing! That was one of the lowest days in my life! One of the doctors was especially unkind to me, a couple of years later I heard he had started getting migraines. Then he had an affair with his office nurse, the entire practice split up. He no longer works for that hospital. The hospital itself was bought out by SSM a few years later and is now in the process of being bought again by The University of Columbia, the hospital I use. Karma is a bitch!

In July of that year I had a Total Hysterectomy, in October I was diagnosed with Fibromyalgia. When I asked my doctor what could be done for the pain, his response was to take hot showers. So helpful…like a person can stand in the shower all day. Now remember I had a hysterectomy, fibromyalgia and chronic migraine. Giant moods swings from the surgery and horrible pain from the chronic migraine and fibromyalgia, neither which were being treated. I was also deeply depressed, very deeply depressed. Our oldest son Nathan, had just moved out on his own. Our very best friends at that time, moved away. I retreated into myself and sat curled up in a ball most of time.  I started cutting myself, it was something I could control, I had absolutely no control over anything else in my life.

I was headed for a crisis, I just didn’t know it at the time. I started having thoughts of suicide and of course I kept all of this to myself. The depression, hopelessness, cutting, the big black hole that I felt myself falling into. Driven there by such horrible pain, with no end in sight. All I wanted to do was escape it all! I had no one to talk to, who was going through the same thing I was. No one to reach out to, it was just me and my thoughts. But when my thoughts actually took me to the point of making a plan to commit suicide, it scared me so badly that I called my doctor’s office. I really didn’t want to die, I just wanted help. Their Nurse Practitioner was there and I knew him very well and vice versa, he was gentle and very kind! He set everything up with the intake counselor at our local Psychiatric Unit. That phone call was the best thing I’ve ever done for myself! I spent seven days inpatient there, the Psychiatrist helped me more in seven days, than my Internal Medicine Dr. had in a year. He started first with the depression and anxiety, them the pain issue, he actually prescribed pain medication for me. Basically because he realized that all of my problems stemmed from the same source. Pain! Treating my pain, depression and anxiety, made a world of difference. No more cutting, no more suicidal thoughts, I began to feel like myself again. I continued to see him and a therapist for quite a while, as for my Internal Medicine Dr. I fired him and got a new one. By not listening to me, he almost caused me to take my life. I learned a lot from that and will never again put up with a doctor who is not willing to listen, or treats me with disrespect.

Finding a good headache specialist is not an easy task, especially if you live in a rural area. My sister had some contacts in the Chicago area, who told her about The Diamond Headache Clinic. So I was able to make an appointment and she drove me there for my first appointment. Chicago is a six-hour drive one way from where I live. My appointment was with Dr. Seymour Diamond. I went prepared to stay and I was admitted. Their standard operating procedure is to take new patients off of any medications that have addictive properties. It took me seven days before I started having any withdrawal symptoms, but when they hit, WOW! Not pleasant at all! I went to Diamond for three years, until an insurance change caused me to be unable to continue. I learned a lot about migraine will going there, much more than I had before. Their inpatient program included, group therapy, biofeedback, physical therapy, dietary classes, art therapy, pharmacy classes, tai chi, they covered the whole migraine.

I’ve been with my current headache specialist for over tens years and I absolutely love him. From day one, he has worked with me on my treatment plan. He is kind and considerate, he doesn’t just treat my migraine, he also treats my fibromyalgia, insomnia, depression and anxiety. When I’m in a long migraine cycle and need to come in for DHE infusions, plus the other medications we add-on. I can just email his office nurse, to let them know what’s been going on and they set up the admission. He has never once doubted my word or questioned me about the need to be hospitalized. We show each other respect, a partnership that has worked very well for more 10 years.

The hospital that I use is a teaching hospital, so I’ve seen many residents over the years. And have educated many about migraine, during my last hospital visit, I had a resident who for whatever reason, couldn’t wrap his brain around fibromyalgia. As I tried to answer his questions, his arms began to cross against his chest, I knew then he wasn’t buying what I was selling. My husband even explained that during a flare, the slightest touch from him caused me great pain. I just left it at that, fibromyalgia is often stigmatized as much as migraine is. As he watched me struggled with pain over the next couple of days, his demeanor changed, he became more considerate of my pain. His seeing was better than words I could have continued to throw at him.

Barring a miracle, I’ve come to accept that I will live with chronic pain everyday of my life. My baseline migraine pain level is a three, pain from fibromyalgia fluctuates depending on, the weather or if I’ve done too much. I also have degenerative disc disease throughout my spine, I have been dealing with a lot of low back pain from that. Sometimes the pain is so bad that I can hardly walk, I feel like a 54 year woman in 90-year-old woman’s body’s. I have an appointment with Pain Management to work on some of these issues.

How I live that life, is up to me. On my good days, I enjoy time spent with my husband and my kitties, Belle and Sugar. Reading, which is my passion!  On bad days, I will still enjoy time spent with my husband and kitties, I just might be asleep on the couch! I will still read, unless migraine pain level is too high. But I will never again allow migraine to steal two years of my life! I am not trying to trivialize pain, not by any means, living every single day with chronic pain is hard, no it’s hell! I’m so very thankful that I don’t have to do this alone anymore! I have support now, friends who know what’s it’s like to go through such pain. Friends that I can reach out to and I know that I will never, ever get to that awful place I was years ago, when I felt the only way was to end to my life. Supporting and encouraging one another is vital, I’m living proof! Tears are running down my face as I write this, if only you could see inside my heart and understand how much I love all of my fellow pain warriors. Never give up on one another!

“Pain nourishes courage. You can’t be brave if you’ve only had wonderful things happen to you. ”    

~ Mary Tyler Moore

Live with hope,

Roni

 

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