I hate when I take a pain pill and decide minutes later I really didn’t need it.

I hate when I’m starving and so nauseous I can’t eat.

I hate when I see that twisted look of pity and sadness on someone’s face when they hear about my condition.

I hate when people say, “I don’t know how you do it.”

I hate when people say, “I get migraines, too.”

I hate when painkillers make my nose itch so bad I want to rip it off my face.

I hate when all the nose scratching leaves a mighty pimple.

I hate insomnia.

I hate mornings after taking sleeping pills and muscle relaxers, when the bed is too comfy and the world is full of jagged edges.

I hate switching painkillers, so I have withdrawal from one and problems acclimating to the other all at the same time.

I hate constipation from too many painkillers.

I hate when I miss something important because of a migraine.

I hate when someone needs me, and I can’t be there because of a migraine.

I hate all the loss migraines and depression cause.

I hate how all those pills make my skin sensitive and my hair thin.

I hate listening to myself whine like this.

I hate that I’ll think of other things to add, right after I sign this as

Payne.

I share this with all of the chronic pain warriors fighting every day for respect, compassion, empathy, and belief. Bless you Payne!

Another Monday. Another week gone. Another started. So stressed about appeal hearing. Trying to stay positive and calm. Not happening. Breathing exercises, positive imagery, keeping busy, nope. It’s so close now. I want time to speed up and to slow down. I am terrified of the outcome. This is EVERYTHING! My life. How I live it. If I can live it. No more options. No other road. No backup. Worst case scenario, denial. Another appeal. Another 3 years. No. Not possible. No money. No possibility of working at any job. Most days getting out of bed in the morning is the hardest part of my day. Some mornings I just don’t. “Sorry Boss! Can’t come in again! Can’t drag my ass out of bed!” Yeah, that’ll go over well! My only contact with the outside world most days is online. Friends have left me. So much pain. Jackhammers and ice picks. My head, neck, shoulders, wrists, hands, fingers, hips, knees. Shooting pains, numbness, tingling, weakness. Ice packs and meds. Not sleeping most nights due to pain. Dozing briefly, then waking up from nightmares. Aphasia, sweating, chills, horrible images left over in my head. Hearing voices and seeing things. All part of Fibro and Migraine. But don’t tell anyone! They’ll lock me up! Medication side effects. Tremor, dry mouth, dizziness, vertigo, nausea, vomiting, stumbling, unable to finish a task or sentence, incoherent, slurring, etc. Depression and anxiety. Causing me to cry uncontrollably, panic attacks, hopelessness, fear of everything and nothing. Unwilling or unable to leave the house. Lonely. Wanting my old life back. My old self. No confidence, no self-esteem, no sense of self. I feel like a burden because I am one. I was self-reliant. I was a functional member of society. What am I good for now?! So much hinging on a stranger’s decision about my life, which they no nothing about. Just doctor reports and impressions. I wish any of them could spend a few hours with me. See what I see, hear what I hear, feel the indescribable pain I feel. Just another day at work for the judge. My future in their hands. So much at stake. Please think of me.

Anna Almendrala
Healthy Living Editor, Huffington Post
Posted: 09/22/2015 10:38 AM EDT | Edited: 09/23/2015 02:14 PM EDT
In August, a startup company called Turing Pharmaceuticals AG bought the exclusive marketing rights to Daraprim, a 62-year-old drug that treats toxoplasmosis, a parasitic infection that can affect those living with HIV/AIDS and cancer.

Led by CEO Martin Shkreli, a former hedge fund manager, Turing jacked up the price of this humble yet life-saving drug from $13.50 per pill to $750 — a stunning 55-fold overnight increase that drew widespread criticism.

Shkreli didn’t invent the practice of acquiring the exclusive rights to an old drug and hiking up the price — in fact, CorePharma, another pharmaceutical company that acquired Daraprim before Turing in 2010, did the same thing — but outrage over his actions have thrust this issue into the spotlight. Doctors, disease experts and patient advocate organizations are banding together to discuss what happens when the price of a pharmaceutical is governed by business interests.

Patient advocacy groups say Turing’s action with Daraprim has put an unjustifiable burden on patients and create unsustainable costs for the health system at large.

The price increase, which took place in August, has already had a chilling effect on the small patient population affected. A joint letter from the Infectious Diseases Society of America and the HIV Medicine Association wrote that hospitals and pharmacies are no longer able to stock the medication. They also calculate that year-long treatment for toxoplasmosis will now cost $336,000 for those who weigh less than 132 pounds, and $634,500 for those who weigh more than that.

‘IT’S CLEARLY THE BEST DRUG.’
In all, only 2,000 Americans use Daraprim every year, noted Bloomberg. While toxoplasmosis affects an estimated 22.5 percent of Americans over the age of 12, typically only people with immune systems weakened by HIV/AIDS, cancer treatment, organ transplants or pregnancy need the medication.

Dr. Carlos del Rio, an infectious disease expert and professor at Emory School of Medicine and Rollins School of Public Health, says that this new pricing places additional barriers between toxoplasmosis patients and the best kind of medicine to treat it. While there are other, second-line drugs that hospitals will likely use instead of Daraprim, they’re not what he would want for himself.

“It’s clearly the best drug,” del Rio told The Huffington Post. “If I had toxo, I’d want to get Daraprim.”

Even if a patient’s health insurance continues to cover Daraprim at the higher rate, there may be added costs to consumers. Pharmaceuticals costs are a top reason that health insurance companies justify raising their policy rates, and society at large ends up paying for it with more expensive insurance plans, or by contributing a bigger percentage of salaries to health care costs.

“Even though you may not think this impacts you, it really does,” said del Rio. “At the end of the day, whether we like it or not, we’re paying for it with our taxes or our policies are going up.”

In response to mounting criticism, Turing Pharmaceuticals AG says it has created special programs to donate the drug to those who can’t afford it, or create payment-assistance programs, noted USA Today. But that doesn’t address larger system issues, like how federal programs like Medicare and Medicaid pay for the drug, or how private health insurance companies make up the cost.

‘THIS IS A PREDATORY STRATEGY.’
When a drug first comes to market, the pharmaceutical company that created it gets 20 years of “manufacturing exclusivity” — meaning the company is able to make and market its creation exclusively. Once that period expires, any firm can make or market the medication under the “generic” label by going through the Abbreviated New Drug Application, a truncated FDA approval process designed especially for the generics market. This usually lowers the overall price of the medication formulation because it allows more pharmaceutical companies to step into the ring, creating competition — and cheaper prices.

But for diseases that have a relatively small number of patients that may need a given medication, other companies often decide the drug is not lucrative enough to justify wading into generics manufacturing. Toxoplasmosis fits this bill, and the fact that no one else stepped up to create a generic competitor means that Daraprim is essentially treated like a new drug on the market. And because Daraprim is the only game in town, it provides an opportunity for startups like Turing to swoop in, snag exclusive marketing rights, and spike the prices.

“This is just a business strategy, this is not a pharmaceutical company strategy,” said del Rio of Turing’s decision to buy Daraprim’s exclusive rights and raise the prices. “This is a predatory strategy.”

The marketing rights for Albendazole, another antiparasitic drug whose patents had expired, was acquired by Amedra Pharmaceuticals in 2010. The average wholesale price of a daily dose went from $5.92 to $119.58 in 2013, which meant that an uninsured patient who needs the drug for six months would end up tens of thousands of dollars in debt, according to The New England Journal of Medicine. And on Sept. 21, Rodelis Therapeutics agreed to return manufacturing rights for the tuberculosis drug Cycloserine after public outcry over a major price increase.

Pharmaceutical price spikes are also influenced by an ecosystem of mergers and acquisitions that reduce competition in the marketplace. For example, between 2002 and 2013, the number of manufacturers making the heart medication digoxin dropped from eight to just three, according to the NEJM report, and the drug’s price increased over 600 percent.

‘WE NEED TO BECOME AWARE.’
What happened with Daraprim is likely to affect other drugs, noted Joey Mattingly, an asst. professor of pharmacy practice and science at the University of Maryland School of Pharmacy. That’s because the U.S. health care system doesn’t have a unified way to appropriately value a drug. For instance, Daraprim used to cost only $1 per pill, according to The New York Times, but CorePharma acquired the rights in 2010 and started raising its price before Turing bought the exclusive rights from CorePharma.

Mattingly wrote on his blog that the decision to sharply increase the price for an old, generic drug — in other words, a drug that any other pharmaceutical company could also manufacture — is based on a gamble that no other company will be nimble enough to immediately get FDA approval for a generic competitor for Daraprim. While Mattingly predicts that within the next year or two, other companies will offer cheaper Daraprim generics, the price will never again go back to where it used to be.

Currently, everything that Turing Pharmaceuticals AG has done with Daraprim is legal. To combat rising drug prices on a systemic level, del Rio called on consumers to start educating themselves about the cost of their medicines.

“We as consumers need to become aware of the price that we’re actually paying for medications,” he said. “If this was something we were buying at the grocery store, we would be paying attention.”

So I had a root canal yesterday. I’ve been putting it off for months due to lack of finances. It finally got so temperature sensitive that I couldn’t drink my coffee. Unacceptable! So I found a dentist who gave me a huge discount and completed the treatment in one visit. I’m glad it’s over. The pain this morning was a surprise. Not sure why. I’m so used to worse pain every day from the migraines and the Fibro. But this is different pain. This is temporary pain. It’ll pass. In a few days I won’t feel it anymore. It’s almost welcome in the strange way. Of course my thought process is so screwed up that my normal is most people’s insane. I can isolate this pain to a single area. I feel it. It hurts. I also know it will be gone soon. If only my daily pain were the same. I fear THAT pain will be with me forever. I’m not giving up on finding a treatment that works. I’m not giving in to a life of constant agony. I think I’m just being realistic. All pain is different. My tooth pain (as bad as it is now) will dissipate. My only hope is that one day my chronic pain will be under control. I’ll never be pain-free. That’s what chronic means. But I have to remain positive. That’s the key to winning! Stay strong and #AlwaysKeepFighting!

My SSDI Appeal Hearing is on October 15th. I’m thrilled to FINALLY have a date after almost 4 years! I’m also terrified. What if after all this time of waiting, panicking, worrying, and stressing, they say no?! What if I’m denied yet again?! Back to the end of the line?! I can’t go through this entire process again! Not physically, mentally, or financially. It’s drained the life out of me as much as my illnesses have done. There’s no more money. It’s literally down to the wire. I’m desperate and completely out of options. I’m crying over it daily. (Crying is such a help with a constant migraine too!) I’m sure some of you are saying “think positive” or worse, “stop thinking about it.” Easier said than done, my friends. My psychologist has taught me relaxation, mindfulness, and even hypnosis. It works to a point. Until those thoughts creep back in because they are front and center in my brain. This isn’t a simple answer that I’m waiting for. It’s my future and if I have one. The pressure is unbelievable and constant. I don’t sleep much due to pain and insomnia anyway, but lately I don’t sleep at all. I’ll nod off for a few minutes here and there during the day. At night, my brain is firing on all pistons. I try to make them positive thoughts. I really do try. But this is such a tremendous part of my thought process, that negativity and doubt sneak right in. I don’t know if y’all are familia with an appeal hearing, but the proof is totally on me! Yes, proof! I have to prove and validate my chronic pain and anxiety to strangers. People who have never met me, haven’t seen my struggle to get through a day, haven’t heard my tears and moans of extreme pain. Haven’t seen me try to make it to the bathroom in time to vomit from the chronic Migraine pain and nausea. Haven’t seen me unable to get out of bed due to pain, weakness, dizziness, vertigo, and/or any of the above. How do you prove in a few minutes and words the way my life isn’t mine anymore?! That I’m not the same person I was when I could work, enjoy life, go to movies and lunch with friends, or even smile. These invisible illnesses have taken away my life. They’ve turned me into a shell of my former self. Unless you are with me throughout the nightmare that constitutes a day in my life, it’s impossible to convey through a few words. Especially to people who are not doctors, specialists, medical or psychiatric people at all! The burden is on me to prove that I’m not capable of doing any type of steady work. Why should I have to go through this myself when 2 medical specialists have written letters stating that I may never be able to work again at any capacity?!  What can I say that they haven’t?! The burden of proof should not rest on the patient. Especially when said patient can’t talk about her situation without breaking down and sobbing uncontrollably or finish a thought or find the right words due to migraine and Fibro fog! So yes, I’m terrified. And will be a basket case until and beyond October 15th and I get a decision. Please think of me in the coming days, pray if you do so, and send me positive thoughts! Bless y’all for your caring and support! 

Continue reading →

I’m stuck. Drowning. No one around to help. Anxiety. Panic attack. Fear of the unknown. Terrified of the future. Out of control. Scared of everything. Worried about everything. My brain is going hundreds of miles an hour. My feet aren’t moving. I can’t go forward. I can’t go back. I don’t want to stay here, stuck. I have to make a move. Trust myself to make the right decision. Pull myself out of this mindset. Take control of the fear and panic. Fight the depression and anxiety. Control what I can. Deal with what I can’t. Take a deep breath. One minute at a time if that’s what it takes. Slow my thought process. Concentrate on one thing at a time. Get through the next five minutes. Then the next five. I can do this. I’ve done it before. Deep breaths. Calming thoughts. Inhale, exhale. Put one foot in front of the other. Take my time. Find one thing to be positive about and hold on to that one thing tightly. Stop overwhelming myself with doubt. Know that I am not alone. And that I’ll be okay. Just not today. #AlwaysKeepFighting 

By Teri Robert patient

patient educator/advocate, author Chair, American Headache and Migraine Association

If you’re reading this, someone close to you is a Migraineur, someone diagnosed with migraine, a genetic neurological disease. Migraine is one of the most misunderstood, underdiagnosed, and undertreated of all diseases. Unless you’ve experienced the pain and other debilitating symptoms of migraine yourself, it can be difficult to understand until you learn more about it. It is not an exaggeration to say that some people have taken their lives to escape the pain. In addition to sometimes extreme head pain, migraine can be accompanied by other symptoms including nausea, vomiting, dizziness, extreme sensitivity to light and sound, temporary loss of vision, inability to concentrate, difficulty in speaking/finding the right words, depression, panic attacks, and far more.

The slightest movement can cause such pain that migraineurs have described it as “an ice pick in my eye,” “my head breaking into pieces,” and “my brain is exploding.” To put it plainly, migraine can be be absolutely devastating.

Here are some basics about Migraine Disease that you should know:

 Based on the most recent U.S. census statistics, Migraine disease affects more than 37 million people in the United States alone.

 Migraines are NOT headaches. Migraine is a genetic neurological disease, similar in some ways to epilepsy. The head pain of a migraine attack is only one possible symptom of an episode of migraine disease, just as a seizure is only one symptom of an episode of epilepsy.

 Migraine disease is NOT a psychological disorder. The disease and all its symptoms are neurological in origin and very, very real. Migraineurs are not neurotic, lazy, “high-strung,”overly emotional, or faking. They are in very real pain and physical distress.

 Not all doctors have the experience and knowledge to properly treat migraine. Finding a doctor to properly treat migraine is one of the most important, and sometimes most difficult, steps in treatment.

 There is NO CURE for migraine. Most migraineurs, with the help of a qualified doctor, can find preventive regimens that will prevent many, but not all, Migraine attacks.

 Migraine abortive medications such as Imitrex, Zomig, Maxalt, Amerge, Axert, DHE, and Migranal, do not work for all migraineurs. It is sometimes very difficult to find medications that will relieve the pain and other symptoms of a migraine attack.

 Migraine attacks can be dangerous. Just having migraine disease increases the risk of stroke, heart attack, and other cardio- and cerebrovascular events and diseases.

 A migraine attack can, in rare cases, actually be fatal. An otherwise healthy 21-year-old member of our community died of a migrainous stroke in November, 2001.

 Migraine disease can be disabling for some migraineurs to the extent that they qualify fordisability income or qualify for accommodation under Americans with Disability Act. There are many whose disease is so severe that doctors are unable to control the attacks, and the migraineur is unable to work or participate in “normal” daily activities. When a migraine attack strikes, most migraineurs desperately need a dark, quiet place to lie down.

 Migraine attacks can be triggered by many things:

o Perfumes and fragrances from other sources are a very common Migraine trigger.

If you live or work with a Migraineur, please refrain from wearing fragrances around them.

o Bright and/or flickering lights, especially fluorescent lighting — some migraineurs need to wear sunglasses, even inside.

o Many foods can be triggers, especially foods prepared with MSG.

o Loud noises and crowded places can also be triggers.

o Changes in weather are triggers for many migraineurs.

o Cigarette smoke, exhaust fumes can be strong triggers.

o Each migraineur’s triggers vary. There are many other potential triggers. This list is just a beginning.

o Stress: There is still some controversy about whether stress itself is a Migraine

trigger or an exacerbating factor that makes o Perfumes and fragrances from other sources are a very common Migraine trigger.

If you live or work with a Migraineur, please refrain from wearing fragrances around

them.

o Bright and/or flickering lights, especially fluorescent lighting — some migraineurs

need to wear sunglasses, even inside.

o Many foods can be triggers, especially foods prepared with MSG.

o Loud noises and crowded places can also be triggers.

o Changes in weather are triggers for many migraineurs.

o Cigarette smoke, exhaust fumes can be strong triggers.

o Each migraineur’s triggers vary. There are many other potential triggers. This list is just a beginning.

o Stress: There is still some controversy about whether stress itself is a Migraine trigger or an exacerbating factor that makes migraineurs more susceptible to their other triggers.

The Migraineur(s) in your life need your help and understanding. They need you to realize that they cannot help being ill, they are not “having headaches for attention,” and they are sometimes unable to care for themselves. If they need medical attention, they need someone to take them and be with them. As well as being extremely painful physically, migraine can be devastating emotionally and to relationships and careers. Since the disease is so misunderstood, migraineurs often feel alone, isolated, and desolate. They also often feel guilty because they are not able to “be there” for their family and friends as much as they want to be and because they may have to miss days of work. The migraineur(s) you know need not only your help with getting their medicines and any medical care they may need; they need your moral support every bit as badly. A good, solid support system is as important to Migraineurs as their health care teams. YOU are very important to them. That’s why it’s important that you understand Migraine.

If you have any questions or need more information, please email me at teri@terirobert.com.

Sincerely

Teri Robert

©Teri Robert, 2001 – Present

Last updated February 3, 2015. 

http://www.HelpForHeadaches.com • http://www.HealthCentral.com/migraine • http://www.MigraineAdvocacy.org

Well, it’s Labor Day weekend. End of another summer. No beach trips. No cookouts. No concerts. No movies. No outings that I would probably have had to cancel anyway. Not worth the stress of “this could happen”, “what if?!”, or disappointment. Better to stay home. My safe haven. My bubble. The only place I can control. Dark, quiet, scent-free. I miss the movies, but the lights and noise level would chase me home. The concerts were so much fun, but too loud and so many people wearing so many scents. The beach was my favorite. But the sun, which I once loved, is now my enemy. All of the simple pleasures in my life have turned into stressors. Reasons for panic and anxiety. Unneeded worry. All chasing me back to my house. My cage. My jail. Don’t get me wrong, it’s comfortable, cozy, relaxing, and safe. But once in awhile, even inmates get yard time. I’m lonely. My only contact with the “outside world” is my computer. I’m blessed to have such good, loyal, understanding, empathetic online friends. My “real life” friends have all abandoned me. No reasons given. Embarrassed?! Tired of my constant cancelling?! Unable to handle my pain?! Whatever the reason, they’re gone. My best friend, secret keeper, confidante, “let’s grow old together” friend, gone. Without a word. It’s easier online. They can’t see my tears, my fears, my hurt, my pain. We talk about it, but it’s not the same as face to face. I see a psychologist. She helps me put things into perspective. My losses, my grief, my fears, my hopes. And yes, I do still have hope. I have to hold on to something. Have a purpose. A reason to wake up and face each new day. Praying for relief, a cure, strength, positive thoughts. Helping others going through similar circumstances. It helps me to help them. To feel like I make a difference to someone in physical and emotional pain. To someone depressed, anxious, panic-filled, like me. We’re strong for each other. Hold each other up. Always reachable. Through new meds, side effects, tests, diagnoses. Bringing laughter to a dark time. But always praying for better days ahead. We must. There is no alternative. Not for me. #AlwaysKeepFighting