http://www.butyoudontlooksick.com
My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
Cartoon image of Christine Miserandino holding a spoon
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.
© Christine Miserandino

The storm rages on. Fierce, wild, wicked, dangerous. Dark, shadowed, black, endless. Unforgiving, destructive, deadly, demonic. Strong, so strong in its fury. Relentless in its wrath. Tearing down what once was stable. Turning it into mere rubble. In seconds, doing more damage than ever thought possible. Unstoppable until it’s ready to move on. No amount of pleading, begging, crying, screaming will make it abate faster. It’s here for as long as it chooses. Maybe forever. Leaving me torn apart and broken in its path. The storm is in my head. This is depression and anxiety. This is my life.

Patient-reported outcomes from the 2015 Migraine in America Survey
By Migraine.com—September 9, 2015
The Migraine In America 2015 online survey gathered insights from 4,502 patients currently diagnosed with migraines in hopes of better understanding their symptoms, treatment experience and life impact. Those surveyed came from across the U.S. They were primarily female and over the age of 40, as well as being married with children. The 2015 survey continued to illustrate the challenges and impact of migraine among patients, building upon findings from previous Migraine in America surveys.

Diagnosis

Migraine has been a long-standing challenge for these patients; most have been experiencing migraine symptoms for at least half of their lives. A total of 59% started experiencing migraine related symptoms before reaching adulthood and ¼ had identified a specific incident that coincided with the start of their migraines. Over half of patients surveyed experienced initial migraine symptoms of head pain, as well as sensitivity to light and/or sound.

Almost half of patients went at least 5 years between initial symptoms and diagnosis. It was typically the patient’s PCP/family physician making the initial diagnosis, with very few having been diagnosed by a headache specialist. While 65% had been diagnosed with chronic migraine (the most prominent classification reported in the survey), only 62% of patients surveyed fit the classification based on their migraine frequency.

Symptoms

Migraine is more than headache pain – patients experienced a myriad of migraine symptoms (on average, about 16 different symptoms). While symptoms varied somewhat across migraine attacks for many patients, most typically included head pain, sensitivity to light and sound, as well as difficulty concentrating and sensitivity to smell. Over half of patients experienced 8 or more migraine attacks each month, and almost half experienced migraine symptoms on 15 or more days a month.

Almost all patients had identified triggers for their migraine attacks, particularly the environment, stress and light; 77% had taken special steps to avoid these triggers. Additionally, almost half reported they are more apt to experience the first signs of a migraine attack at a certain time of day, and about a 1/3 noted that they experience more symptoms during a migraine attack at a certain time of day.

Nearly all patients surveyed reported suffering from other health conditions, typically allergies, anxiety and depression were the leading comorbidities. A total of 1 in 3 patients suffered from both depression and anxiety.

HCP Engagement

Nearly all patients were currently under the care of a physician (specifically for migraine). Over half were satisfied with that relationship and ¾ were comfortable talking with their healthcare professional about their migraine symptoms. PCPs / family physicians and neurologists were the predominant healthcare professionals patients had seen for their migraines. Interesting that less than half of patients have seen a headache specialist at some point over their journey.

Less than half of those surveyed have visited an ER or an urgent care facility in the past year for their migraines. Among the few who were not currently seeing a healthcare professional specifically for their migraines, the prominent reasons included being able to manage on their own and having given up on doctors.

Treatment Experience

While patients reported feeling as if they had tried everything to manage their migraines – with prescription medications, OTC drugs, complementary and alternative therapies – they continued to seek out new approaches to treat and prevent migraines, and are willing to keep trying new options.

Abortive / acute prescription migraine medications and OTC pain medications were used by over half of patients, with preventive prescription migraine medications and rescue prescription migraine medications also commonly used. Among those treatments tried and abandoned, complementary and alternative therapies had the highest abandonment rate, followed by OTC pain medications and preventive/prophylactic prescription medication. Among preventive migraine medications, antiepileptic drugs were currently used about 1/3 of patients and antidepressants by about ¼.

Amid abortive / rescue medication users, triptans were currently used by over half and anti-nausea medications by almost 40%. Over 2.5K respondents had used a triptan within the past 3 months and ¼ had used 2 or more forms. Three out of 4 of patients who use abortive/rescue medication cited they would initiate treatment within an hour of suspecting they were getting a migraine. Over ¾ had withheld taking a medication to spare it for another time.

Self-medication was currently being used by about 1 in 10 patients surveyed, whereas 1 in 4 patients were currently using complementary and alternative therapies for their migraines. Among current therapy users, sleep/rest and dark rooms were prominently employed, however dietary supplements were used most frequently and consistently by their users.

Migraine Impact

Migraine was most often described as “debilitating” and impacted all areas of patients’ lives – work, career, family relationships, social activities and self-esteem. Depression and anxiety were common among patients surveyed. While almost 60% of those surveyed were still employed in some capacity, a majority of those surveyed were classified as “severe disability” on the MIDAS scorecard.

Despite feeling they had tried all options to manage their migraines, patients continued to seek out the latest migraine treatments – 17% were aware of new migraine treatments that may be coming out soon. Patients also turned to migraine specific websites or their healthcare professional as a resource to learn about or manage the disease.

Summary

Data from the 2015 Migraine in America survey illustrate that migraine continues to have a profound impact on patients’ lives. While the majority of survey participants reported that they take both preventative and abortive medications, more than half still experience 15 or more headache days per month. Unfortunately, patients with migraine continue to face challenges in meeting their healthcare needs, such as lack of access to headache specialists, treatments that lack efficacy, and the stigma associated with living with an invisible illness.

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Severe fibromyalgia affects people with higher body mass index to a disproportionate degree, indicating that weight contributes to the severity of symptoms. Multidisciplinary treatment that combines medical and complementary features is the only effective treatment for severe fibromyalgia.

Severe fibromyalgia can have tremendous impact on quality of life. An August 2011 study published in the journal Health and Quality of Life Outcomes looked at 203 patients with varying levels of fibromyalgia pain, sleep disturbance, depression, and anxiety using a total of five different questionnaires. The study found that 66% of patients could be classified as suffering from moderate to severe fibromyalgia and that the severity of symptoms was directly related to quality of life in terms of productivity, happiness, and general self-esteem. People with moderate to severe fibromyalgia missed an average of 1.8 work days per month, which is roughly three times the average for the general population. Fifty percent of patients in the study reported disruption to their employment as a result of their disease.

Weight and Severe Fibromyalgia

While the cause of fibromyalgia is unknown, there are certain risk facts that seem to have an impact on the severity of symptoms. One of the most important is weight. In a 2011 study in the journal Arthritis Care & Research, doctors at the Mayo Clinic found that an increased BMI led to more severe fibromyalgia in terms of symptoms and quality of life.

What is very interesting about the study is that of the 888 patients involved, the BMIs were almost evenly distributed between normal, overweight, obese, and severely obese, suggesting that weight does not cause fibromyalgia. However, the difference in the severity of symptoms across weight groups was statistically significant and suggested that even if weight does not cause fibromyalgia, it certainly contributes to the severity of the symptoms in people who have the disorder. Patients with greater BMIs complained of more physical dysfunction, more lost days of work, more pain, more stiffness, and greater levels of depression.

The results in relationship to weight suggest that exercise may have multiple mechanisms of positive impact in fibromyalgia. It is well know that exercise, even without weight loss, is associated with a decrease in the symptoms of fibromyalgia. It appears that an added benefit of exercise may be that weight loss can decrease symptoms and reduce the severity of fibromyalgia.

Sleep and Severe Fibromyalgia

According to the Mayo Clinic, people with fibromyalgia sleep roughly one third less time than the average individual, a value that increases to almost one half in patients with severe fibromyalgia. In a 2011 study in the Journal of Sleep Research, a correlation between quality and duration of sleep was made with symptom severity. Interestingly, the study also made a correlation between symptom severity and physical activity.

Fibromyalgia is a vicious cycle because flares of pain are generally accompanied by fatigue, both of which reduce an individual’s motivation to exercise. Through no fault of their own, these individuals end up stuck in bed or milling about the house as they try to find relief from their pain. Unfortunately, this all-too-understandable reduction in activity only serves to worsen the symptoms of fibromyalgia. One of the best ways to avoid this vicious downward spiral is to find a fibromyalgia support group. The bond between members can help motivate individuals to keep pushing forward through the tough times and can help to minimize the potential for closing off one’s self at home as pain intensifies. Studies show that symptom severity is dramatically decreased in patients that are active in support groups.

Age and Fibromyalgia Severity

A study in Nursing Research in September of 2011 found an interesting correlation between severity of fibromyalgia and age. Middle aged adults are more likely to have severe fibromyalgia than are older adults. It seems that symptoms are worse at onset of the disease and slowly but consistently decrease over time. The study looked at 533 adults over the age of 50 with fibromyalgia. The group closest to 50 years of age reported more symptoms and more functional limitations as a result of the disease than did older individuals. The reason for this association is not clear.

Treatment in Severe Fibromyalgia

The mainstays of therapy in fibromyalgia are important regardless of severity. Patients need to be aware of sleep, eating, and exercise patterns, take prescriptions medications on a regular basis, and remain active as part of a well-rounded treatment regimen. What is interesting, however, is that the more severe fibromyalgia is, the greater the necessity for a multidisciplinary approach. In other words, those who suffer from mild symptoms can get away with only engaging in a few of the treatment options. For those who suffer from severe fibromyalgia, however, a treatment program must include multiple aspects if it is to succeed.

A July 2011 study conducted in Spain found that patients with severe fibromyalgia required medical treatment, massage, exercise, and thermal therapy to achieve relief in terms of pain, social function, and overall health. While this was only a pilot study, it seems to suggest that severe fibromyalgia is best treated with a combination approach and that medication alone is not enough.

The severity of fibromyalgia is tightly linked to weight, age, and activity level. While no one can control how fast she ages, weight and activity are well within the control of the individual. As both are related to exercise, the tie to severity between these further supports the notion that exercise is one of the most important aspects of any fibromyalgia treatment regimen. Severe fibromyalgia is a major personal and societal burden that deserves more attention in research.

“This is my struggle! I just pray everyday and hope someday I’ll be healed!” said Michelle Frazier in response to Tracy H.’s Migraine Journey published on Migraine Again. If only we knew what the future holds. We all want to know when this migraine pain is going to stop — and if it ever will.

Will it get better? Will it get worse? Will my vacation, birthday or wedding day be a migraine disaster? Will I be able to enjoy chocolate or wine or bright sunshine again? Is there any way I can stop chronic migraines in the future? That’s what we want to know. Yet doctors can’t give you a definitive answer, because migraine attacks are generally unpredictable. A new study is finding what increases your risk of progressing from episodic to often disabling chronic migraine – something every migraine sufferer should know.

Common Migraine Life Cycle
According to The Migraine Research Foundation, migraine is most common during the peak productive years, between the ages of 25 and 55. While 1 in 10 school age kids have migraine, The Migraine Trust reports that most people have their first attack during their teens or early twenties. It is rare for migraine to start later in life. Typically, migraine becomes less severe and frequent, and may even disappear, by around the age of 50. For some women this is associated with their menopause, for others it may be retirement or reduced stress.

How Migraines Progress Over Time

According to a 12-year retrospective study on how migraines progress over time, 3 of 10 of migraine patients who had been getting 1 to 6 attacks per month reported their attacks had stopped.  That’s great news!  For a third of us, migraines may be temporary.

The researchers, led by Dr. Carl Dahlof of the Gothenburg Migraine Clinic in Sweden, found that of the remaining patients who continued to experience the headaches 12 years later, most had fewer, briefer, and milder attacks.  That’s also good news.

• Fewer Attacks for most:  80% reported a change in attack frequency, with 80% of them having fewer migraines and

  

  Depending on your age and how you treat it, migraine can get worse – or much better. (Source: Stewart et al 1994)

  20% having more.

• Shorter attacks for most: 55% reported a change in duration of attack, with 66% of them saying their attacks lasted shorter periods of time and 34% saying they lasted longer.
• Less intense pain for most: 66% said the pain intensity changed, with 83% of them experiencing milder pain and 17% experiencing more severe pain.

Now, the bad news:  a small percentage progressed to the more disabling form known as chronic migraine, defined as having migraines more than 15 days a month.  The American Migraine Prevalence and Prevention Study (AMPPS) found that 2.5% of the US population suffers from chronic migraine – including many of us. Another study is underway, the Chronic Migraine Epidemiology and Outcome Study (CAMEO), to follow 12,000 chronic migraine sufferers and discover the factors that increase the likelihood of episodic migraines turning chronic.

What You Can Do Now to Stop Chronic Migraines in the Future

According to Dr. Richard B. Lipton, director of the Montefiore Medical Center Headache Center and professor of neurology at the Albert Einstein College of Medicine, in New York City, the CAMEO study revealed “not surprisingly, among people with episodic migraine, the worse you are, the more likely you are to continue to progress. So high frequency and high disability are important predictors of progression.”

Dr. Lipton told Migraine Again that there are several risk factors patients should be aware of that increase likelihood that episodic migraines will turn chronic and disabling.  These include:

• Comorbid conditions, including depression, anxiety, asthma and rhinitis
• Adverse childhood experiences and highly stressful adult life events
• Use of opioids (e.g. Fiorinal/Fioricet/Tylenol with Codeine, Dilaudid, OxyContin, Percocet) and barbiturates (e.g. Amytal, Nembutal, Seconal) to treat attacks
• Allodynia, the experience of ordinarily non-painful stimuli as painful
• Obesity

So what can you do?  Patients are often advised to manage risk factors for progression to chronic migraine when possible, such as losing weight, treating depression/anxiety, and avoiding risky medications.  And to be patient: many people eventually outgrow them, often in their fifties and sixties.  Many women expect that menopause will finally bring relief, but that only happens for about half of migraine sufferers.  In fact, surgical menopause actually increases the odds of migraine continuing, says Dr. Susan Hutchinson, Director of the Orange County Migraine & Headache Center, Irvine, CA.

Learning from Each Other

That’s what’s so great about the Migraine Journeys you’ve each shared this past year.  Each is different. Each is a poignant real-life, true story of one person’s struggles, lessons and victories with migraine.  Each is a sliver of that crystal ball we’re looking for to tell us what our migraine future holds.

It takes strength and a good attitude to tolerate migraine pain every day, every week or every month.  Until your pain improves, you can help someone else understand what lies ahead bysharing your Migraine Journey.  It’s easy, takes about 7 minutes to answer a few questions, and we don’t use your name to protect your privacy.

Your Migraine Journey could offer a warning, relief idea or comfort to someone else.  Can you help someone else stop chronic migraines before they start?

 

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!