Less Snark, More Education and Empathy

wpid-wp-1421975721526.jpeg So, I saw my GP on Tuesday. Not my favorite person by any means. He is brusque, snarky, condescending, under-educated about Migraines, and misinformed about new therapies and treatments. Why do I still see him?! My lawyer,  who is fighting for my SSDI benefits, says it looks bad if I doctor-hop while waiting on my appeal hearing. I have already changed psychiatrists due to previous doctor being unable to see each patient as an individual and denying my right to medication refill without having an appointment. I had to cancel due to severe migraine (redundant) and my anti-anxiety meds ran out. I called and explained that I couldn’t get off the bed, let alone drive, and that I had no money for a cab and no one to take me. He flat out refused to give me even enough pills to et me by u til I could get in to see him. He quoted “office policy.” I was a dental office practice manager for 6 years. I treated each patient and situation on a case-by-case basis. It can be done. Anyway, I’m seeing a new psychiatrist next week. So, back to my GP issues. Knowing my history, the doctor walks in the exam room and says “So, how have you been?” I replied, “same.” He asked how work was going. I told him (again) that I hadn’t been able to work for almost four years. He said, “Oh, the headaches?” I answered, “No! The migraines!” How could he still not distinguish the difference?! I said, “I can’t just take a Tylenol and go to work!” He said, “So, you get a headache, it’s painful and miserable, then it goes away and you’re fine?” I think I almost yelled back, “No! My MIGRAINES don’t go away! I wake up with it and go to bed with it! It’s chronic and intractable and so far, not treatable!” His answer?! “How about a part-time job?” AARRGGHH! I’m so done! Next appointment is in 6 months, so please, let me have my hearing and benefits before then. So frustrated! I need to find a compassionate, empathetic doctor with knowledge and understanding of migraines and fibromyalgia. Wish me luck!

©2015 American Migraine Foundation

Why support migraine research?iStock_000022158549Small

Migraine is an exceedingly common disorder that causes substantial pain, disability and societal burden. Unfortunately, most of the biology that causes migraine is poorly understood. Many treatments are insufficient, inadequate, or associated with significant risks, such as overuse, abuse or addiction. Ongoing funding is needed to support migraine research and educational efforts are needed to further improve the quality of care of those with headache.

What do we know about migraine?

Recent studies show that migraine is associated with a change in communication (excitation) of cells in the brain compared to those individuals without migraine. However, why and how a migraine headache starts remains a mystery. We do know that once a migraine starts, there is activation of the pain fibers around the tissue (dura) that surrounds the outside of the brain. We also know that there is clear activation of the trigeminal nerve (shown in yellow), and is responsible for relaying pain information from the head and face, to the brainstem region. From the brainstem, pain information travels to the higher brains centers such as the thalamus then on up to the cortex.

Limitations with current therapies

Currently, there is no cure for migraine. Treatments are aimed at reducing headache frequency and stopping individual headaches when they occur. Some of these therapies used to stop the pain can be overused or abused, leading to further deterioration of their headache condition. Prophylactic treatments reduce headache frequency by approximately 1/2 in only about 40% of patients who take these medications. Many of these medications are associated with side effects, which limits their use. Because of these limitations regarding headache treatments, ongoing research is needed to further understand the biology and genetics behind the disease so treatments can be specifically targeted to treat each patient’s headache condition. Additional funding is also needed to further explore new therapeutic options that may work in patients who do not respond or cannot take currently available migraine medications.

Current State of Funding in Migraine

Migraine research receives very little funding. This is true when considering the total amount of funding and funding adjusted for migraine prevalence, disability caused by migraine and the societal costs from migraine. The National Institutes of Health (NIH) is the major source of governmental research funding in the United States. The NIH allocates only 0.012% of its research budget to headache research.

In 2013 the NIH granted only $19 million for migraine research. Diabetes received $1,007 million in 2013. Asthma received $207 million in 2013.

The amount of funding that the NIH spent on migraine research in 2007 is equal to only $0.36 per person with migraine. Diabetes received $49.38 per person with diabetes. Asthma received $12.25 per person with asthma.wpid-wp-1432820251735.jpeg

My Illness is NOT a Secret. But why should I explain it to you? JUNE 15, 2015 ~ BEKINDLIS

This blog entry moved me to tears! This woman is strong, independent, brave, and everything I hope to be one day!

invisible me

This is a photo of me… photo-shopped to make me grey and invisible, as that is how I am feeling right at this moment.  My illness is invisible, however I am not, and this seemingly gives people the right to ridicule me in public, it’s not fair and I want it to end.  Not just for me but everyone who goes through embarrassment like I did today.

I will not use my walking stick just because it provokes your compassion, I will not do anything to the detriment of my own independence, just so you can see my illness and not take the piss out of me.

You wanna know what happened?


Today, no less than 3 hours ago, I was in the Ramsgate Waitrose store very close to my home (that I traveled to, 1 stop by bus), getting a few bits for dinner this week.  I was having a particularly good day, and went without my walking stick, I knew I would be able to hold onto a trolley in the store, and this is always more helpful than the stick is anyway!  I felt good to get out of the house and mingle in the community a little bit.  I start work again soon, and I’m trying to build my tolerance/strength up.

I haven’t been able to carry a shopping basket for several years due to serious pain building up quickly in my arms.  They are not an option for me so I chose a shallow trolley.

I went to the meat aisle and placed four items into the trolley and went to the checkout, there was a small queue.  I felt ok, calm and relaxed, when the man in front turned, chuckling to himself and said “That’s a bit lazy isn’t it?”.

I looked at him, smiling, bemused…

He went on “Bit lazy isn’t it, all that trolley for those few things?!!”.

I just smiled and shrugged my shoulders.  He didn’t say a word more as he turned and tended to the 3 items he had carried to the checkout.

Normally I would gob off.  Do the… “Actually I have a disability, I can’t hold baskets, it hurts me, holding onto the trolley helps me walk”…. But I didn’t say this, I stood in silence.

Those few chuckled words had reduced me.

Made me feel inadequate.  That man shat all over my good day.

See it was only a few words that normally I could laugh off, explain, educate the misinformed gentleman about my plight and that of thousands others like me.

But in that moment, I was broken, reduced to silence.

I came home and cried.

See my illness really is invisible whilst you can see me.  You see me, Lis, the lady in her mid 30’s, who looks younger, wears eyeliner and modern clothing.  She’s standing in the line, getting shopping for her boyfriend because hes been hard at work and taking care of her for months with little thanks and she wanted to do something nice for him on this sunny Monday afternoon.  He came home to her anger and tears.

Please think next time you see a lazy person, like…

A teen boy in the disabled seat on the bus

A man who gets a taxi just 5 minutes walk down the road

A woman with 2 items in her trolley…

Maybe next time you see a ‘lazy’ person… keep your thoughts invisible too.  Chronic illness, learning disabilities, mental illnesses are very visible when you live with them.

Love Lis x

THE SEMICOLON PROJECT June 18, 2015heatherparrie

wpid-fb_img_1424364439689.jpgToday I went to a tattoo artist, and for $60 I let a man with a giant Jesus-tattoo on his head ink a semi-colon onto my wrist where it will stay until the day I die. By now, enough people have started asking questions that it made sense for me to start talking, and talking about things that aren’t particularly easy.

We’ll start here: a semi-colon is a place in a sentence where the author has the decision to stop with a period, but chooses not to. A semi-colon is a reminder to pause and then keep going.

In April I was diagnosed with depression and anxiety. By the beginning of May I was popping anti-depressents every morning with a breakfast I could barely stomach. In June, I had to leave a job I’d wanted since I first set foot on this campus as an incoming freshmen because of my mental health. Depression took a lot from me, but one of the most difficult things that my mental illness snatched from me was the title of Summer Welcome Leader.

I got this tattoo as a promise to myself that I would never willingly end my sentence. I got it as a reminder to take this summer as a pause, and then to keep going strong next year. I also got this this tattoo to open up conversations between myself and other humans about mental illness, because as difficult as mental illness is, what’s more difficult is feeling stigmatized. Or like you failed. Or like people are feeling sorry for you. There’s no question that the stigma surrounding mental illness inhibits struggling humans from finding the help that they need, and I find this absolutely heartbreaking because I know I am not alone when I say that depression destroyed my GPA, my relationships with my friends, my involvement on campus, and much, much more.

So if one out of every four people struggle with mental illness, then why did I feel like I was they only person who had ever experienced this before? If 25 of every hundred people I pass on the street have a clinical need for psychiatric care, then why did I feel like I had to hide my shaky hands every time the panic hit my harder than a train or feel like I had to shove every suicidal thought on a shelf behind old dictionaries and behind classic novels where no one could find them? 30,000 people die from suicide every year and that’s more than twice that of HIV and AIDS but still I am embarrassed to tell you that I can’t get out of bed in the mornings.

Let me make this clear for those who don’t know me well: I am not who you would expect to be depressed. Let me say this louder for those in the back: you cannot put me in a box decorated with black nail polish and frequent trips to Hot Topic because you don’t wear depression like a necklace or put on anxiety like a hat. You cannot spot depression because you become depression.

I am depression and I am not the silent girl dressed in all black hiding in the back row of your lecture hall. I am depression and I the perfect picture of a 20 year old sorority girl at an SEC school. I am depression and I am oversized fraternity formal t-shirts and Nike shorts that hang off my frail, starved hips that the Greek town girls envy so much. I am depression and I am the shining face on my sorority’s executive board and the bright smile touring high school seniors around my beautiful, botanical garden of a college campus. I am depression and behind stylish sunglasses too big for my face and a resume too long for a college sophomore, no one ever knew that my illness had crippled me so severely that I spent 20 hours a day wrapped in blankets in my bed, trying desperately to fight away the bitter cold that had taken residence in my heart and mind.

I hid myself away in my 7 million dollar sorority house, tucked somewhere between “you bought your friends” and “can’t daddy’s credit card fix your problems?”. I called 250 women on my campus by the name of sister but I was still lying at the bottom of a lake, unable to breathe while, effortlessly, everyone around me grew gills. Because no one tells you what to do when your life becomes a ten-car pile up on the New Jersey turnpike in rush hour traffic. Because no one tells you how to tell the very people who framed your life and hung it up on the wall for everyone to admire the girl who has it all together that nothing is going right anymore. No one tells you what to do when the good days dwindle so severely that you can’t remember the last time you woke up and didn’t want to die.

I was 13-year old the first time someone told me that suicide was a selfish act. I was 15 the first time someone I knew killed themselves. I was 17 when I realized society conditions people to be disgusted with suicide. I was 20 years old when suicide started to make sense.

Every 16.2 minutes, someone takes their life. In the time you’ve been reading about the crippling disease that made me want to take my own life, someone just took theirs. And still, we shame and stereotype and stigmatize the people who need the most help and teach our children that having to ask for help is something we should feel bad about, when in fact sometimes strength is admitting that you don’t have any left.

Oftentimes I feel like depression ruined my life. It took so much that it’s become a desperate desire for something good to come from this horrible experience. My hope is that, because of my experience, I can be an advocate and champion for mental health awareness. That I can start conversations with girls in my chapter and students on this campus and hopefully influence someone’s life for the better.

I am lucky. I am lucky because I live on a campus where my therapy visits are free and my antidepressants only cost $10 and there’s a disability center that will help me get through my classes. I am lucky because I have a mother who believed me and supported me when I said I was depressed and never made it sound like my fault. I am lucky because I have a sister who drives all the way to Columbia to see me when I need it. I am lucky because I have a job with Mizzou Tour Team and bosses that aren’t afraid to sit me down and make sure I’m eating and sleeping and doing okay. I am lucky because I have Carter and Jackson and Esther and Jordan and Kenzie and Erin and Brittany and Jim and Grace and so many others who in their own individual way have weaved a support network so caring and strong that there was no chance of me ever falling through the cracks.

The problem is that people struggling far worse than me don’t have half the support I do. Mizzou saved my life. Not everyone has a “Mizzou”. So I will show my tattoo proudly and champion for the people who cannot champion for themselves. Every day that I say no to the dark thoughts depression tries to tangle my mind with, I am winning a battle that society has not made easy to win. I’ve learned a lot from my struggle with depression. Every day is another day of riotous and endless waves of transformation and as much as I wish it didn’t hurt so bad when it hit me, I can’t say that I’d change who I am or the struggles I went through.

Another thing: my tattoo is just slightly crooked. At first that bothered me. And then I remembered that life’s a little crooked, too. And now I love it even more. It’s hard to find a place to end this think piece, but I’ll end it with the quote that I keep on my computer screen at all times, so I never forget. I hope anyone that’s ever struggled with their mental health never forgets, either:

“You are worthy of breathing. Someday you will learn that.

So don’t ask yourself why you can’t be




Because depression took a lot from you and you are still fighting to take it back.”
For more information on the tattoo I got, please visit http://www.thesemicolonproject.com. If you need help, please check out online resources or call the National Suicide Prevention Lifeline at 1-800-273-8255. And as always, ask for help. Never fear admitting you need more than you can give yourself.

Migraines: 36 million affected in the United States

Kym Klass, Montgomery Advertiser

Nearly one in four U.S. households has someone affected by migraines, according to the Migraine Research Foundation.
On about day nine of a 12-day migraine a couple of months ago, I might have confessed to one person that I sat down inside my house at the end of the day and just let myself cry.
I was beyond exhausted, and strained mentally, physically and emotionally. The normal one-to-two-day migraines I have experienced every few months since my mid-20s would not lift, and while manageable — I didn’t miss a day of work, but did work a couple of days from home — there wasn’t an end in sight, and I felt it would never go away. Even my loyal, can’t-live-without prescription, wasn’t working.
The front of my head, from temple to temple, was a constant source of pain, even if sometimes “just” dull pressure. The stabbing-feeling in the eyes (it would alternate eyes, thankfully), and the nausea took its toll. And after the first full week, a friend very quietly said, “I see it all over your face.”
I was beat. And as a woman, I’m not alone.
About 27 million women in the U.S. are affected by migraines. Total, 36 million men, women and children suffer from the disease — about 18 percent of women in the U.S., and about 6 percent of men, according to the Migraine Research Foundation.
June is recognized as Migraine Awareness Month.
Nearly one in four U.S. households has someone affected by migraines, with the disease most common during the peak productive years, between the ages of 25 and 55 years old, according to the foundation. There is a 40 percent chance a child will suffer from migraines if one parents suffers from them. If both parents suffer from them, the chances increase to 90 percent.
Nobody in my family suffers from migraines. But they have seen first hand how debilitating the disease can be.
While I was able to manage through my 12-day ordeal, there have been times in the past that I could not even get out of bed. There was another time when my daughter was about 8 years old, and had to miss summer camp one day because I could not even lift my head off the pillow.
There was a time it took an hour to email in sick to work because the glare of the computer screen was that strong. I would have called, but that would have required more effort.
There are times I can not speak above a whisper. Other times, there can be no televisions on in the house because any noise hurts too much.
There are times I drive while holding my head in my hand, begging for the ride home to go faster.
There was the time just this past weekend — while out of town, and without my prescription — that I started to text a friend to decline a dinner invitation. I stopped the text mid-way through because it hurt too much, and was too exhausting, to look at the phone and focus. My daughter offered to finish the text for me.
It was laughable the next day.
A migraine is a syndrome, a collection of symptoms that arise from a common cause. A syndrome may occur in a complete form, with all of the typical symptoms, in a less complete form, with some symptoms, or in specific groupings of symptoms, according to the foundation. A migraine is classified according to the grouping of its symptoms. Since symptoms vary widely, migraines are often misdiagnosed.
Many women with migraines tend to have attacks triggered by skipped meals, bright lights, stress and anxiety, alcohol (often red wine), caffeine (too much or withdrawal) and hormonal changes during the menstrual cycle, according to womenshealth.gov. It also lists lack of sleep (or too much) and weather changes as triggers.
Despite the 12 days, I know I’m lucky. I know I don’t have it as bad as some others.
Migraine sufferers experience visual disturbances, nausea, vomiting, dizziness, extreme sensitivity to sound, light, touch and smell, and tingling or numbness in the extremities or face, according to the foundation. While the symptoms and degree of severity depend on the person, I know I’ve got it pretty easy.
There have only been a few times when I didn’t think I’d live to the next day — and those who suffer know that is not an exaggeration.
I believe my first migraine was at age 26. I used to call them “one-day headaches,” because I didn’t know what they were. All I knew was that it forced me to the couch, leaving me unable to do much of anything. No type of aspirin worked. Aspirin is a joke to me now. Nothing over the counter works. Without knowing what was wrong, I used to just wait it out. And the next day, it was gone.
Over time, the migraines would sometimes increase to “two-day headaches.” But never three. Never, ever 12.
The one-to-two-day migraines continued for about nine years before it affected my vision. Sitting at a computer screen working, my vision became blurred in one eye. I thought something was wrong with the website I was on, so opened a new window. Same thing. I turned away from the computer, held a hand lightly over the “good” eye, and realized I was seeing water spots.
And I thought I was going blind — which is funny today. But not at the moment.
Nausea quickly settled in, and then the pain in the front of my head. I thought: “That’s the ‘one-day headache I usually experience,'” and called my doctor.
After blood tests, vision tests, a brain MRI and a lot of unanswered questions, I was finally diagnosed with having migraines.
Still, the question remained: What was causing the migraines? Over time, I noticed they intensified in pain and frequency as the weather changed. And when allergy season peaked. And after paying attention even further, noticed if there were several nights of little sleep, I would be burdened by another one.
We discussed these triggers when I finally saw my doctor last April on about day nine of my migraine. Allergies were at an all-time high during that time, with my doctor having noticed an increase in patients visiting for allergy relief. We relieved some of my allergy symptoms with antihistamines, and I was prescribed new migraine meds.
It worked. And three days later, I cautiously moved forward. I waited for the migraine to return, but it didn’t. And slowly, slowly, the exhaustion from being so sick eventually wore off as well, and I started to feel normal again.
This is one of the hardest diseases to try and explain to someone, because it is not a headache, and it’s hard for us to hear you compare your headache to our migraine. “The migraine sufferers” is not an exclusive club — it’s just one you don’t want to belong to.
Thankfully, sadly, we’re not alone in this. There are millions of us laying in dark rooms with cold cloths on our necks whispering quietly to others. There are millions of us continuing to work despite the pain and discomfort. And there are millions of us waiting for the pain to lift.
Kym Klass can be reached at 334-240-0144 or by email at kklass@gannett.com. Follow her on Twitter @kymklass, on the Living Well page on Facebook, or on LivingWellByKym on Instagram.
What is a migraine?
a recurrent throbbing headache that typically affects one side of the head and is often accompanied by nausea and disturbed vision.
But, really:
A migraine sometimes feels like there is a vice on each side of your head, and someone is cranking it to make it tighter and tighter until the pain is unbearable.
What not to say to migraine sufferers
1. “Do you still have a headache?” It’s not. A headache. Yes, that’s a two-word-two-sentence answer. Because sometimes it hurts that much to talk. The best question to ask would be: “How are you feeling?” and let the person answer, if they can.
2. “I think I had a migraine once.” You don’t “think.” Either you know, or you didn’t have one. Did you feel like vomiting? Was your vision blurred? Did your head feel like it would explode when you lowered your head below your heart? Did you feel you could not open your eyes? Could you not speak above a whisper?
3. “I had a headache that felt like a migraine.” No, you didn’t.
For more information
To learn more, visit the Migraine Research Foundation online at http://www.migraineresearchfoundation.org.

There is No ‘Epidemic’ of Painkiller Overdoses

There is No ‘Epidemic’ of Painkiller Overdoses
June 12, 2015
By Ken McKim

There is no “epidemic” of opioid overdoses. If 16,000 deaths in a year is an epidemic, then we really need to focus on the pandemic that is the over 100 million people in the U.S. who suffer from chronic pain.

For example, car crash fatalities in 2013 claimed more lives than opioid overdoses (there were 30,057 fatal motor vehicle crashes in the United States in 2013 in which 32,719 deaths occurred according to IIHS). As this qualifies as an epidemic by some people’s twisted logic, I suggest we handle reducing car crash fatalities in the same manner that we regulate the prescribing of painkillers.
Effective immediately, you will have to own your car for two months before you can get a license to drive it. To obtain a driver’s license, you must first establish a history with the DMV by visiting them at least two times per month for two months, paying $40 per visit during the two-month period you are waiting to get approved for your license.

Once you have your driver’s license, you will only be able to purchase gasoline at particular gas station with a signed fuel-certificate from the DMV, which will allow you to purchase what the DMV thinks is an adequate supply of gas for a 30-day period.

For each new 30-day supply of gasoline you must obtain a new fuel certificate from the DMV, which will require another $40/five-hour appointment at the DMV.

If you try to take your DMV fuel-certificate to a different gas station than you normally use, your fuel-certificate may be refused and your name entered into a national database as someone guilty of “fuel seeking behavior.”

Additionally, you will not be able to refill your gas supply after 3PM on Fridays, weekends or holidays. Your gas allotment must last for the full 30-day time-frame specified by the DMV. If you run out of gas before that 30-day period is up, you will not be able to get another fuel-certificate until the 30-day calendar period has ended. So remember, you should not be driving anywhere except to and from work, with possibly a once a week trip to the grocery store.

NOTE: Asking for more than your allotted fuel allowance will also constitute “fuel seeking behavior” and the DMV may choose to no longer see you.

The DMV also reserves the right to randomly smog check your vehicle at any time. If your vehicle fails the smog inspection, your driver’s license will immediately be revoked.

NOTE: You must pay the cost of the smog inspection yourself.

I’m sure this will result in an immediate drop in automobile deaths. You’re welcome.

How to prevent the financial pain of migraines By Chris Taylor

Mon Jun 15, 2015 3:14pm EDT
NEW YORK (Reuters) – If you have never experienced a migraine, consider yourself blessed by a thousand angels.

Sarah Hackley wishes she could say that. The Austin-based writer and editor suffers from headaches so severe, “it feels like someone is jamming an ice pick into my temple while dropping an anvil on my head.”

Nowadays, she gets attacks at least twice a week, sometimes daily. But twice in her life time, the 31-year-old mom of two has experienced migraines that lasted for an astonishing two years.

Migraines may not exert just physical pain or emotional duress. They could hurt the pocketbook, too, and blow up the most careful financial planning.

Hackley quit her job, working part-time from home, and has spent many thousands of dollars visiting specialists around the country. She isn’t saving much for retirement.

“Migraines are a huge deal for your finances, because they influence what you can do,” says Hackley, author of “Finding Happiness with Migraines.”

Saving is already hard for most Americans. Throw in a debilitating condition that can leave you bedridden, wracked by pain, sensitive to light, noise or smells, and unable to work. How will your bank account fare then?

“Part of the suffering is that migraines take such a huge hit on people’s lives and finances,” says Carolyn Bernstein, clinical director of the Comprehensive Headache Center at Beth Israel Deaconess Medical Center in Brookline, Massachusetts.

“You are unable to go to work, you are using up all your vacation time, and you are prevented from being able to advance in your career,” Bernstein says.


These recurring headaches torture a surprising number of people – about 36 million Americans, or 10 percent of the population, according to the New York City-based nonprofit Migraine Research Foundation.

Each year, that translates to 113 million lost work days, a cost to employers of $13 billion, and $50 billion in annual healthcare services.

Migraines can torpedo finances at multiple stages of your career. They can affect your education, by encouraging sufferers to drop out; your prime earning years, by hampering productivity and promotions; and your golden years, with the pain pushing you into early retirement.

“When migraines are out of control, they can set people up for a lifetime of underachievement,” says Dr. Richard Lipton, vice-chair of neurology at the Albert Einstein College of Medicine in the Bronx, New York.

Part of the challenge is that migraines are mysterious and individual in nature.

Still, there are a few key strategies migraine sufferers can use to minimize the financial hit.


“See a doctor and get treatment right away,” advises Lipton.

A tailored personal strategy might include taking preventive medication on a daily basis, avoiding triggers that could range from missing meals to getting irregular sleep or drinking alcohol, and having additional medication on hand for when the migraines hit.

To control ongoing healthcare costs, consider medical savings accounts. You will be forking out for everything from deductibles to co-pays to out-of-network services, and you should at least be using pretax money to cover all that, saving you on the order of 30 percent.

Bernstein provides this example: If you are on three different medications to control your migraines, each one with a co-pay costing $10 a month, that’s $360 for the year.

Add in physical therapy 10 times a year, each session with a $25 co-pay, for another $250 annually. Other treatments like acupuncture could prove effective, but might not be covered by your insurance plan.


If attacks are causing you to be away from work fairly consistently, you may be seen by higher-ups as someone who cannot be counted on, and miss out on plum assignments or promotions. Or worse, be first in the firing line if there are staff cutbacks.

As a result, “ask your doctor for a letter to give to your Human Resources department,” advises Bernstein. “That way you won’t get penalized for having migraines. Once it’s documented, you have some degree of protection.”

As for Sarah Hackley, she is able to work only a few hours a day, or a migraine is triggered, laying her out for a full week.

But with the help of doctors and fellow sufferers at online communities like Migraine.com, she can at least manage her money and her migraines.

“It’s an expensive condition, but all the support out there is invaluable,” she says. “You can’t put a price on that.”

Daily Struggle To Live

wpid-wp-1432820269510.jpegwpid-wp-1421975721526.jpegIt’s not JUST a headache! It’s a Disability and should be treated as such! I’ve been unable to work for four years, stay in a constant state of severe pain, cognitive dysfunction, visual disturbances, nausea and vertigo. My symptoms have not been relieved by any treatment so far. These include homeopathic, chiropractic, acupuncture, yoga, biofeedback, vitamins and minerals, supplements, Botox, physical therapy, acupressure, ice, heat, 30+ medications including preventive, abortive, pills, injections, patches, narcotics, anti-inflammatory, anti-depressants, anti-anxiety, beta blockers, anti-seizure, anti-Parkinsons, nasal sprays, IV treatments, etc. I’ve seen neurologists, headache specialists, rheumatologist, sports medicine, Johns Hopkins University Headache Clinic, ER doctors, psychiatrists, etc. I have been fighting for SSDI Benefits for over three years, the past 10 months with the help of a lawyer. The average wait time in Virginia to go before a judge for an appeal hearing is 12-18 months. I can’t get Medicaid or any assistance at all until SSDI Benefits are approved. How am I expected to live?! Buy food, pay bills, get prescriptions, pay doctor co-pays and coinsurance?! There is something seriously wrong with the system. I have worked steadily for 30+ years and have paid into Social Security the entire time. Where are my benefits when I need them?! Why does it fall on me to have to prove how sick I am when multiple doctors already stated it as fact?! Why am I perceived as lazy, faking, and not sick enough to not work?! My illnesses are invisible. I don’t have cancer or anything that shows up on an MRI, CT scan, or blood work. So it’s my word against SSDI. I have to show them that I’m not able to work any type of paying job. To show them that I’m not just lying around the house, eating bonbons and watching soaps. I wish they could be here with me for a day. To see my struggle to get out of bed in the morning after little or no sleep. The pain in my back, hips, legs, head. The spasms, nausea, fear I won’t make it to the bathroom in time. The tears, the frustration, the anger. Taking handfuls of prescription pills, too nauseous to eat, but guaranteed to vomit if I don’t. The falls, which cause more pain. The fear that I won’t be able to get up. The furniture walking so I won’t fall when the dizziness hits. Skipping meds on the day of an appointment so I am in agony, but hopefully won’t get pulled over for driving erratically. The sunglasses and hat to block the light and glare, rain or shine. Hands over my head to hold back the pain. The paper bag in case I have to vomit. The fear of losing my license and being totally homebound, as I have no money for cabs and can’t use disabled transportation since I’m not “officially disabled. The uncontrollable crying that hits anytime, anyplace. The guilt, fear, loneliness, hopelessness that make me feel like giving up. My reasons to fight are fading from my mind in the face of each new day with no pain relief and no financial relief. But most of my suffering is done alone. I have no one to bear the burden for me. I will fight for my benefits at the hearing. I will try to convey how my life is a mockery of what it once was and maybe someday I could be whole again, with some assistance and empathy. I’m not asking for sympathy, just compassion for my situation. I only want what’s due to me, nothing more. Well, there’s my rant. I have to stop now as my head is pounding as usual and it’s time for more meds, which will blur my vision so I can’t write. I am trying my best to stay strong and positive and to keep fighting. It’s getting harder every day. I hope I’m strong enough for long enough. Thank y’all for reading and for your caring and support. My fundraiser is http://www.youcaring.com/AlwaysKeepFighting and my blog is carryonandalwayskeepfighting.wordpress.com 💔 Please help if able. My situation could just as easily have been yours.

Light At The End Of The Tunnel?!

Don't you cry no more!
Don’t you cry no more!

After an extremely severe bout of depression and hopelessness, I finally have a glimmer of light at the end of my tunnel! I saw my pain management doctor on Tuesday. We agreed that more aggressive treatment was needed. If my insurance company approves, I need an MRI of my neck to allow anesthesiologist to perform various nerve blocks and, if pain recedes, to “burn” nerve endings to stop migraine pain for at least 6mos., possibly permanently. Also waiting on approval for a Lidocaine/Ketamine nasal spray to be used daily as a preventive. Assuming procedures are approved, I’ll post the copay and coinsurance amounts, if not, I’ll post the cost for each procedure along with doctors documentation. If I can’t raise the money, I can’t do either option and doctor would like to try both. I’m still waiting for an appeal hearing date from SSDI. I cannot work and have no other form of income. I’d rather stay here in Virginia for the procedures, since doctor agreed to perform them, and save the cost of traveling to Philadelphia for an inpatient stay. Please help me find some relief from this never ending pain to allow me to live my life once again! Donate! I’m desperate and out of options! Any amount is a blessing and greatly appreciated! Anonymous welcome. Thank y’all for your caring and support! Always Keep Fighting!

Days Go By

I never realized how important routine and structure is in my daily life. That is, until I was without it. I’ve always either been in school or worked since I was a teenager. I had a reason to get up in the morning, a purpose, a goal, a means to an end. I’ve never been a “morning person”, but I’d always get up when the alarm went off. I worked jobs that I loved, jobs that I liked, jobs that I tolerated, and even jobs that I hated. They were all stepping stones in my path to where I thought I’d wind up in the future. I learned something from every job; some good things, some brilliant things, what to do, what not to do, and some things I’ll use for the rest of my life. Some things I incorporated into my personal life. Ethics, loyalty, reliability, punctuality, responsibility, and many others. Since my various illnesses caused me to leave my last job, I’ve been unable to return to the working world. I want to, I feel I have to, I just can’t, physically or emotionally right now. And that’s where the big problem comes in. Besides needing the income, the benefits, the “daily grind”, etc., I need the people contact. I crave it! I do not do well alone. I never have. I get too deep into my own head and that’s terrifying for me. I need to be around people and feel needed and have a sense of purpose. I need a routine and structure like some people need drugs. I feel lost and alone and empty. My days blend into one another until I don’t know if it’s day or night, weekday or weekend. I hate living in limbo like this. I need to find proper treatment, relief, a cure. I miss my life! It’s going on without me since time doesn’t stand still. I’m sad for the missed days, months, years, I’ll never get back. I don’t want to lose anymore time. Please help! http://www.youcaring.com/AlwaysKeepFighting wpid-wp-1432820304823.jpeg