Fibro Warrior – Judi Lieberman

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Judi Lieberman - Fibro WarriorThis week I’m interviewing Fibro Warrior, Judi Lieberman, of Chesapeake, VA. She’s a single lady who lives with her therapy cat, Samantha. She was diagnosed with migraines in 2005, and Fibromyalgia in 2007. She’s no longer working as a result of her illnesses, but she loves to read, blog, and advocate for awareness.

What lead up to your diagnoses?
The migraines got more severe and frequent, so I saw a migraine specialist. We tried preventives, triptans, and Botox, before I was referred to pain management. Body pains (I thought I tore tendon in my knee) and sudden, severe hip pain sent me to the rheumatologist resulting in the Fibromyalgia diagnosis. I tried Lyrica, but there were too many side effects.

What was your life like at that time?
I was working full-time as a Practice Manager for a dental practice. I loved my job, had been there for 6 years, and expected to work there until retirement.

How did your family initially handle your illness?
It’s just my Mom and myself. She is the most caring, loving, empathetic woman I know. She feels horrible that I have to go through this, but she’s always there for me.

What do you feel is the most challenging aspect of Fibro?
Getting people to understand that just because this illness cannot be seen, doesn’t mean it’s not real and debilitating. Awareness is key and spreading the word for more money for funding and research.

Remember Your Mantras

Do you have any other co-existing conditions?
Daily Chronic Migraine, Intractable headache, insomnia, depression, anxiety, and panic attacks.

What, if any thing, have you found/ done that has improved your symptoms?
Nothing so far. I’ve tried holistic, diet, stress-relief, chiropractic, biofeedback, yoga, exercising (when able), swimming, etc. Still seeking that “miracle cure!

How open are you with friends & family about your illness & symptoms?
I share everything with my Mom, who lives with me. I’ve lost many friends due to my illnesses, including my best friend. I’m not sure if they couldn’t handle the missed lunches, movies, parties, etc, or if they got tired and couldn’t handle the person I had become (introverted, depressed, anxious, in pain, etc.)

Do you blog about your illness? If so, what inspired you to do so?
Yes, I recently started a blog mainly to vent my frustration. In doing so, I started remembering things I had forgotten about my “previous life.” Writing inspires me to advocate for better treatments and cures. Raise awareness and hopefully write something that will make another sufferer see themselves and respond or at least relate.

What is the best advice you’ve received about Fibromyalgia?
Find an empathetic doctor!

What was the worst advice that you followed?
Get over yourself! It’s not THAT bad!

 What is your favorite way to cope with your life as a spoonie?
Humor!

What is it that inspires you to keep going, despite your illness?
Hope for a treatment that works. Faith that things will improve. Talking to others with similar conditions.

What is one thing you’ve learned about yourself since your diagnosis?
I am stronger than I ever imagined I could be.

What is the most important piece of advice you would give to someone newly diagnosed with Fibro?
Don’t give up! There are empathetic, informed doctors out there, so do your research and don’t give up!

Is there anything else you’d like the readers to know?
Always keep fighting! Be stronger than your demons! Advocate, educate, make yourself be heard!

Get to know Judi better! You can connect with her on Facebook, Twitter, and on her blog.

Migraines: Myth Vs. Reality

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An Understanding of Migraine Disease & Tips for Migraine Management

Michael John Coleman and Terri Miller Burchfield of M.A.G.N.U.M.

      “One pill makes you larger, and one pill makes you small and the ones that mother gives you, don’t do anything at all,” words the Cheshire-Cat could have uttered, but they came to us from Grace Slick in her iconoclastic lyrical interpretation of ‘Alice In Wonderland’. Over a hundred years ago a fine art photographer took us on a wonderful journey through the eyes of Alice. The photographer-turned-writer drew from his personal experience with the disease he so suffered from, that of Migraine. His name was Lewis Carroll, and one may argue that if it were not for his constant Migraine attacks, he may not have been inspired to give us these gifts of fantasy by writing Alice’s Adventures in Wonderland and Through the Looking-Glass and What Alice Found There.

      After a century of society and the medical community blaming Migraines on their sufferers, advanced technology and the age of information gave us the knowledge to begin to understand this debilitating disease. However, dangerous and outdated myths surrounding the Migraine disease have not yet been dispelled on a widespread basis. Not only are such myths believed by many loved ones and co-workers of those with Migraines, but by those with Migraines themselves (Migraineurs). Furthermore, such myths continue to be unwittingly reported in the media. The Migraine disease is a serious health and disability problem that affects approximately 32 million Americans, most of whom are women, with up to 38 million Americans having Migraine genetic propensity. There is no known cure for the Migraine disease, only treatments for the symptoms. Furthermore, such treatments are not yet wholly effective and Migraineurs may show a diminished tolerance to a variety of medications, treatments, and pain management regiments.

      Dr. Joel R. Saper, M.D., F.A.C.P., Director, Michigan Head-Pain & Neurological Institute, summarized for M.A.G.N.U.M. the problems associated with Migraine: “There is no condition of such magnitude that is as shrouded in myth, misinformation, and mistreatment as is this condition [Migraine], and there are few conditions which are as disabling during the acute attack.”

      In addition to being disabling, Migraines can be life-threatening. To put this in perspective, more people died from Migrainous Stroke last year than were murdered with handguns. The World Health Organization in 2004 in a Blue Book report noting that Migraine & Headache disorders are a global public health calamity. Dr Peer Tfelt-Hansen, president of IHS, explained:

“They are common neurobiological and often life-long conditions occurring throughout the world that affect men, women and children. They have been shown to cause a huge burden of disability. WHO ranks Migraine as one of the top twenty causes of years of healthy life lost to disability. And Migraine is but one headache disorder Ð all headache disorders together cause at least double the disability of Migraine alone.”

      Celebrities and historical figures with the Migraine disease include, among many, Vincent Van Gogh, Claude Monet, Julius Caesar, Napoleon, Ulysses S. Grant, Robert E. Lee, Virginia Wolfe, Lewis Carroll, Mary Todd Lincoln, Elvis Presley, Loretta Lynn, and beloved American President John F. Kennedy just to name a few.

      It is important to arm yourself with the real facts and mechanics of this disease to improve your quality of life.

      Set forth below are a few of the most common and devastating myths surrounding Migraine, and the corresponding facts that counter such myths. Once the facts are known, proper treatment can be sought by Migraineurs, both through medication and management of controllable Migraine triggers. You would be surprised how understanding your combination of trigger mechanisms will do more to reducing the number and frequency of attacks than a prophylactic drug regiment (taking multiple drugs several times a day, every day, as a preventative treatment).

MYTH: A MIGRAINE IS JUST A BAD HEADACHE.

REALITY: MIGRAINE IS A DISEASE, A HEADACHE IS ONLY A SYMPTOM. IN ADDITION, THE CAUSE OF MIGRAINE PAIN IS THE OPPOSITE OF THE CAUSE OF HEADACHE PAIN.

      Migraine is disease, a headache is only a symptom. Migraine pain is caused by vasodilation in the cranial blood vessels (expansion of the blood vessels), while headache pain is caused by vasoconstriction (narrowing of the blood vessels). During a migraine, inflammation of the tissue surrounding the brain, i.e., neurogenic inflammation, exacerbates the pain. Therefore, medicine often prescribed to treat a headache, such as beta-blockers, dilate the blood vessels and therefore can make a Migraine worse.

      Unlike a headache, the Migraine disease has many symptoms, including nausea, vomiting, auras (light spots), sensitivity to light and sound, numbness, difficulty in speech, and severe semihemispherical head pain. One Migraine attack alone can last for eight hours, several days, or even weeks.

      Migraine is a genetically-based disease. We first learned this in the mid-90’s, as it was specifically stated in correspondence with M.A.G.N.U.M. by Dr. Stephen J. Peroutka, M.D., Ph.D., President & CEO of Spectra Biomedical, Inc., a group of research physicians dedicated to understanding the genetic basis of Migraine and other illnesses, the “data are unequivocal: Migraine is a genetically-based illness. Individuals with a single parent having Migraine have approximately a 50% chance of having Migraine. This susceptibility is neither psychological nor induced by environmental causes.”

The the really exciting genetic discoveries where yet to come! And it came from down under by an Australian genetic research team at Grithiths University, north of Sydney. The Millennium year was a breakthrough year for Migraineurs as the Australian team, lead by Professor Lynn Griffiths, discovered not one, not two, but three genes for Migraine disease! MAGNUM had the opportunity to interview Dr. Lyn Griffiths, one of the world’s top experts on Migraines and genetics. Dr. Griffiths is the director of the Genomics Research Center at the Gold Coast campus of Griffith University, in Queensland, Australia. She told us that the research clearly shows that almost all Migraineurs have a close relative who is also a Migraineur. Migraineurs have a real ally in Dr. Griffiths as we where very impressed with her resolve for follow her research as far it goes, which just may lead us to a cure in the future.

      A Migraine is induced by various controllable and uncontrollable triggers. Uncontrollable triggers include weather patterns and menstrual cycles, and controllable triggers include bright light, aspartame, and alcohol. The severity and frequency of Migraines for one person depends upon how many triggers an individual must experience before a Migraine is induced. The combination of triggers is different for each person.

MYTH: MIGRAINE IS CAUSED BY PSYCHOLOGICAL FACTORS, SUCH AS STRESS AND DEPRESSION.

REALITY: MIGRAINE IS A NEUROLOGICAL DISEASE, NOT A PSYCHOLOGICAL DISORDER.

      Migraine is a true organic neurological disease. A Migraine is caused when a physiological (not psychological) trigger or triggers cause vasodilatation in the cranial blood vessels, which triggers nerve endings to release chemical substances called neurotransmitters, of which the neurotransmitter serotonin (5-HTT) is an important factor in the development of Migraine.

      Dr. Saper stated in his endorsement letter to M.A.G.N.U.M. that “[Migraine] is not a psychological or psychiatric disease but one which results from biological and physiological alterations.” Similarly, Dr. Fred D. Sheftell, M.D., Director and Founder for the New England Center for Headache specifically stated in his letter of endorsement that “Migraine is absolutely a biologically-based disorder with the same validity as other medical disorders including hypertension, angina, asthma, epilepsy, etc. Unfortunately, there have been many myths perpetrated in regard to this disorder. The most destructive of which are ‘It is all in your head,’ ‘You have to learn to live with it,’ and ‘Stress is the major cause.'”

      Misdiagnosis of Migraine as a psychological disorder can lead to a doctor prescribing unnecessary, counterproductive, and even dangerous medication. It is common for a Migraineur to be diagnosed, for example, with clinical depression and prescribed unnecessary drugs, leaving the Migraines unaffected. The continued presence of the Migraines may lead the doctor to believe that the Migraineur is unable to “handle” problems and is still “depressed”, leading to continued unnecessary drug treatment … and so on.

      As mentioned above, the Migraine disease is induced by various trigger mechanisms. Trigger mechanisms can be broken down into two primary categories: uncontrollable and controllable. The Migraine triggers usually work in combinations.

      Remember, Migraine is a disease that involves a heightening of one’s senses, all of one’s senses. A Migraineur is more sensitive to his or her surroundings, including light, sound, smells, taste (chemicals in foods), and touch (including the touch of the atmospheric pressure on one’s body). Awareness of one’s environment is critical for a Migraineur.

      A good example of an uncontrollable Migraine trigger is weather patterns. Germany, for example, offers a telephone number that people such as weather-sensitive Migraine sufferers can call to find out the risk to their health of that day’s weather pattern. A recent study entitled “The Effects of Weather on the Frequency and Severity of Migraine Headaches” conducted in Canada arrived at the following conclusions: 1) “Phase 4” weather, characterized by a drop in barometric pressure, the passing of a warm front, high temperature and humidity and oftentimes rain, is closely associated with higher frequency and severity of Migraine attacks.; 2) a high humidex discomfort index during the summer is associated with an increased frequency of Migraine attacks; 3) wind from the southeast was shown to be associated with more attacks than wind from any other direction; and 4) a number of Migraine sufferers may be sensitive to extreme rates of barometric pressure changes.

      Another common uncontrollable trigger is the menstrual cycle. As explained by Dr. Stephen D. Silberstein, M.D., F.A.C.P., Co-Director, The Comprehensive Headache Center at Germantown Hospital and Medical Center, Migraine usually develops around the time of the first menstrual period, called the menarche. The Migraine appears to be the result of falling levels or reduced availability of estrogen. Migraine sometimes becomes worse in the first trimester of pregnancy, but many women are Migraine-free later in their pregnancy. Menstrual Migraine is often more difficult to treat than other types of head pain. Women who have Migraines only with their period can often achieve relief by taking preventive (prophylactic) medication just before their period begins. If severe menstrual Migraine cannot be effectively controlled by any of these medications, hormonal therapy is a possibility.

      Controllable triggers, on the other hand, include bright light, chemical smells, second-hand smoke, particular alcohols such as red wine and some hard alcohols such as scotch, foods that are known vasodilator such as fish, some chocolate, aged cheese, and foods which contain nitrates and/or the radical vasodilator MSG.

      Therefore, if one avoids controllable triggers during Migraine-weather or menstrual cycles, one may be able to escape a Migraine attack. Another tip: take abortive medication prescribed for Migraine at the earliest sign of a Migraine attack. Oftentimes, if one waits to take the medication until the attack has matured, the medication may prove practically ineffective. The drugs commonly prescribed to Migraineurs fall into two groups: abortive and preventative (prophylactic). There are some common problems and adverse effects associated with a host of the medications. Some of the more pronounced are: from abortive drugs, dizziness from Stadol, tolerance to barbiturates, rebound headache from overuse of Ergotamine and over-the-counter non-narcotic analgesics (e.g., Tylenol, aspirin and NSAIDS); and from preventative drugs, beta-blockers and calcium channel-blockers can trigger headaches/Migraines. Get to know your pharmacist, he or she can be an important source of information.

MYTH: MIGRAINE IS NOT LIFE THREATENING, JUST ANNOYING.

REALITY: MIGRAINE CAN BE LIFE THREATENING, INDUCING SUCH CONDITIONS AS STROKE AND COMA.

      Migraine can induce a host of serious physical conditions: strokes, aneurysms, permanent visual loss, severe dental problems, coma and even death.

      According to the New England Journal of Medicine, “migraine can sometimes lead to ischemic stroke and stroke can sometimes be aggravated by or associated with the development of migraine.” Twenty-seven percent of all strokes suffered by persons under the age of 45 are caused by Migraine. Stroke is the third leading cause of death in this country. In addition, twenty-five percent of all incidents of cerebral infarction were associated with Migraines, according to the Mayo clinic. Most recently the British Medical Journal reported that after evaluating 14 major Migraine & stroke studies in the U.S. and Canada that Migraineurs are 2.2 times greater risk for stroke than the non-migraine population. That risk goes up to a staggering 8 times more stroke risk for women Migraineurs on the pill!

      Migraine and epileptic seizure disorders are also interrelated. The most intimate interrelationship between the two being Migraine-triggered epilepsy. Migraine affects up to 15% of the epileptic population. In basic terms, Migraine and Epilepsy are both disorders characterized by paroxysmal, transient alterations of Neurologic function, usually with normal Neurologic examinations between events (attacks).

      Not only can the Migraine disease be life threatening, but it can have a devastating and disruptive effect on normal living. Migraine sufferers experience not only excruciating pain, but social ostracism, job loss, disruption to personal relationships, and prejudices in the workplace.

      Oftentimes people think that those with Migraines just can’t handle life, or, in reality, are drug addicts or alcoholics. Such perception can be formed when, for example, people see a Migraineur wearing sun glasses indoors (photo sensitive), lying in a dark and silent room (photo and sound sensitive), making frequent trips to the rest room (nausea and vomiting), leaving early, working late, slurred speech, all what they may think is erratic behavior. According to Dr. Sheftell, “Historically, patients with the most intractable Migraines experience a downward spiral in terms of income and contributions to society at large.”

      Also, a recent study showed that the loss of labor time and lost productivity of Migraine sufferers may exact a significant toll on U.S. business. According to a position paper signed by the American Academy of Pain Medicine, et. al., 150 million work days per year, equivalent to 1,200 million work hours, are lost each year to head pain. The corresponding annual cost to industry and the health care system due to Migraine amounts to $5 to $17 billion.

MYTH: ANY DOCTOR WILL RECOGNIZE AND PROPERLY TREAT MIGRAINE.

REALITY: MIGRAINE IS ONE OF THE MOST MISDIAGNOSED, MISTREATED AND LEAST UNDERSTOOD DISEASES.

      The fact that so many doctors don’t take Migraine seriously can be as disabling to the Migraineur as the disability itself. The leading doctors in the areas of neurology and head pain have themselves stated that this disease is grossly misunderstood and misdiagnosed. In fact, 60% of women and 70% of men with Migraine have never been diagnosed with this disease. This medical ignorance and corresponding inaccurate writings unfortunately perpetuate the myths and misunderstandings about Migraine and convey this to the general public.

      Dr. Saper stated that “Migraine is a serious and underestimated health problem … Patients with Migraine are shunted along an assembly line of misdiagnosis, undertreatment, or frank mismanagement. They are subjected to unnecessary procedures and preventable consequences.” And as Dr. Silberstein wrote to M.A.G.N.U.M., “Migraine sufferers must not only cope with their pain, but also with society’s misunderstanding of the disorder. Migraineurs are frequently dismissed as neurotic complainers who are unable to handle stress. The truth is that they frequently battle against great odds in order to hold down jobs and support families … Young Migraine sufferers sometimes miss enough school so that they are unable to graduate with their peers.”

      Similarly, Dr. Sheftell stated “In addition to misdiagnosis and under-diagnosis, Migraine sufferers will bear the brunt of discriminatory policies by a variety of health care agencies.” Such agencies may deny reimbursement for emergency room visits and for hospitalizations for the most severe sufferers. It is not uncommon for doctors to think that a Migraine sufferer is in the emergency room to receive drugs, and dangerously turn them away.

      Because Migraine is a genetically-based disease, severe Migraine, according to Spectra Biomedical, “will be diagnosable by objective DNA tests with in the next few years. These tests should also lead to a significant improvement in the disease management of this common and often disabling illness.”

      Improved health care related to the Migraine disability is one way in which M.A.G.N.U.M. is working to improve the life of Migraineurs. M.A.G.N.U.M. is working with U.S. Senator Charles Robb to include Intractable Migraine in the Code of Federal Regulations “Listing of Impairments” Parts A & B. This is an immediately achievable health care reform on which Senator John Warner (R-VA) & Congressman James Moran (D-VA) have committed to work with M.A.G.N.U.M. on.

According to the world’s leading Migraine disease epidemiologist, Dr. Richard Lipton, of the Albert Einstein College of Medicine of Yeshiva University, — “Education and empowerment are the keys to successful Migraine management. Patients, who understand their disease, identify their triggers and learn to use both behavioral strategies and medications effectively can dramatically reduce their burden of illness.” MAGNUM in working hard to continue to empower Migraineurs by keeping access to quality information about their disease ever available and current.

      We are far from a cure, let alone a sure-fired treatment, for Migraine. But understanding that Migraine is a real and debilitating disease goes a long way toward improving the quality of life for Migraineurs and their loved ones.

      And if you are not a Migraine sufferer, then remember the next time you offer advice to the person in your life that suffers from Migraines, make sure it’s not toxic (i.e., you need to avoid stress, cheer up, don’t drink Coke, or other well-meaning but emotionally debilitating statements). Rather, offer to turn down the lights and the TV, and let them know you understand. Remember: Migraine is an “invisible” disorder. “Well! I’ve often seen a cat without a grin,” thought Alice; “But a grin without a cat! It’s the most curious thing I ever saw in all my life!” Like Alice’s Cheshire-Cat who sat in a tree revealing himself only to Alice, he nonetheless had great impact on her daily travels, as Migraines do on individuals who suffer from them.

( Michael John Coleman and Terri Miller Burchfield are both Executive Board Officers of M.A.G.N.U.M.: Migraine Awareness Group: A National Understanding for Migraineurs, a non-profit health care public education organization dedicated to bringing public and government awareness to Migraine as a true organic neurological disease. Mr. Coleman is a nationally-recognized artist who has suffered from intractable Migraines since the age of six. If you would like further information or would like to help M.A.G.N.U.M. achieve its goals, please contact them at 100 North Union Street, Suite B, Alexandria, VA 22314 phone: (703) 349-1929 fax: (703) 739-2432 web: www.migraines.org )

MRI’s and Migraines

wpid-wp-1432820207013.jpegSorry I’ve been out of commission for a few days now. Even more out of commission than usual. My pain management doctor wants to try a new treatment which I’m all over. But to do the procedure, I needed an MRI. I’ve been dreading it since even without a migraine, they’re so freaking loud. I hoped and prayed for days prior, that the morning of the procedure I would wake up migraine-free (yeah, right!) and feeling at least halfway decent. So, of course, I didn’t sleep the entire night before the procedure due to stress and painsomnia, and had a 9-10 pain scale migraine in the morning. I couldn’t take my usual morning pain pills because I had to drive to the appointment. It was a “cluster fuck” (please excuse the language) from the get go. No sleep, no meds, raging migraine, sunlight, heat index of 110°, bright office, narrow metal tube, and an array of jackhammer, high-pitched beeping, pinging, loud clicking, machine gun firing, etc. I had earplugs, which did nothing to dull the cacophony. The migraine pain quickly escalated to 10+. I felt nauseated and like I might vomit. I started to have a panic attack. I’m not claustrophobic, but all the factors combined and I just wanted out. The technician had given me a button to push if I needed to stop for any reason, but I just wanted done and out. I made it, barely, and half an hour later, came out of the tube. I sat up on the exam table and tried to pull it together. I still had to drive myself home. As I left the building on wobbly legs, still dizzy and nauseated, I was just so thankful it was over. I got home, medicated, rehydrated, and went to sleep. Hopefully the next procedure will help with my migraines, but PLEASE, no more MRI’s in my immediate future! Quiet tests only!

#AlwaysKeepFighting

In regard to the recent wave of support for Jared Padalecki, I, for one, am thrilled. He admitted to dealing with depression, anxiety, panic attacks, and losing friends to suicide. Jensen, as well, has been personally affected. I have experienced all of the above and have not been able to be open and honest for fear of losing friends due to the stigma of mental illness. Jared’s bravery and honesty in admitting his personal fight against these stigmatized conditions changed my feelings about sharing my story.  Jared and Jensen establishing their #AlwaysKeepFighting campaign and enabling open lines of communication between themselves and the #SPNFamily, has affected so many lives already. Bringing these often considered embarassing, hidden, shameful mental illnesses into the light and talking openly about them helps lower and eventually dispel the attached stigma. I have suffered from panic attacks, anxiety, and related depression since my medical issues appeared 5 years ago, and impacted my life so severely. Chronic pain and depression often go hand in hand, which makes perfect sense if you think about it. Being in severe, debilitating pain 24/7 would make anyone depressed and anxious. Being labeled chronic, knowing there may not be an end in sight, is terrifying. Feelings of loneliness, worthlessness, uselessness become the norm. I can’t do the things I used to do anymore. Simple things like going out to lunch or a movie, without fear of having to cancel, leave early, or break down emotionally in front of people is always first and foremost in my thoughts. Sufferers of invisible illnesses, such as mine, which include chronic daily migraine, fibromyalgia, depression, etc., are looked upon as attention-seeking, lazy, liars, and using their illnesses as an excuse to not be a contributing member of society. These impressions are stigmas and falsehoods, due to misinformation, lack of understanding and lack of empathy. Any forum that brings these illnesses to the forefront, to make them understood, to teach employers, teachers, the medical community, and the public to be accepting and compassionate are victories for all of us touched by these conditions. This includes sufferers, family members, caregivers, friends, etc. The #AlwaysKeepFighting campaign brought the #SPNFamily even closer and allowed us to openly discuss our feelings, our personal fights, our battles, our wins and losses, our ups and downs. We can do this in a safe, comfortable environment. Those that need help can ask for it and receive recommendations for doctors, therapists, websites, chat rooms, etc. Just the relief of knowing that you are not alone, others exist just like you, and that you have resources to help is a huge deal. I am forever grateful to .@JensenAckles and .@jarpad for their huge hearts, willingness to make all of us feel like a real family, their boundless love, devotion, dedication, and compassion for helping others. They set an example by always being there for each other, taking care of each other, and truly being brothers by always having each other’s backs. #J2 are my inspiration to continue battling my inner demons and to #AlwaysKeepFighting. 💕

Side note: If you are familiar with #JaredPadalecki, #JensenAckles, or #SPNFamily, Google or search on Twitter. You won’t be sorry!

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“What It Is Actually Like To Be Chronically Ill” by Chanel White

In this onslaught of popular media can you see past the facade of beautiful celebrities with their perfect hair, on point make-up and unscathed bodies during a hospital admission? Perhaps you look at those depictions of disease and believe it is an accurate portrayal. Let’s take a moment to step back from the illusions we are fed by society and familiarize ourselves with the true situations chronic illness sufferers face.

In the real world hospital admissions are not quickly staged over by the seasons changing outside a window, or time lapsed by a fade to black — they linger, and are mind-numbingly monotonous. You are vividly aware of every week, day, hour, minute and second spent stuck in that uncomfortable bed. Much of your stay is spent counting ceiling tiles, stalking your friends on Facebook or simply sleeping because you’re in too much agony to do anything else. There are not always gaggles of doting visitors in your room either; the reality is many people are too busy to drive miles out of their way for a visit to your hospital in another town.

After the first few weeks you are no longer an interesting commodity anyway, but a tired post on social media that people scroll right by. Your room is not quiet — loud beeps break through every hour as your many pumps finish a set of fluids, nurses enter in to take vitals every 15 minutes even during the night and you probably have a roommate that listens to the television much too loud. A private room is a hot commodity you are more than likely not going to get, sometimes you don’t even get a window. And you definitely can’t leave your room, let alone your bed, without an alarm going off alerting staff that you are not where you are supposed to be.

You are more than likely a disheveled, greasy mess; you sometimes don’t get to shower for many days at a time, and sponges baths really aren’t everything they are cut out to be. You wear the same clothes over and over, or have surrendered to the typical hospital garments because you probably didn’t expect to get admitted when you entered that ER. Your hair is matted and sweaty, you probably have remnants of smudged, old makeup caked into your skin, and you most definitely possess large bags under your eyes, bruised arms from blown IVs and an overall exhausted appearance from the loss of sleep.

The hospital is neither a perfect establishment where everything goes according to plan, nor run by perfect people exempt from making mistakes. The wrong medications get sent up to your room which delays your treatment, and the pump that was ordered for your tube feeds doesn’t correspond with the bags ordered so you have to wait another hour to get your nutrition. You may have just had an allergic reaction to the new medication you received and are now back at square one waiting for the doctor to prescribe another. With the way your luck is going your IV may have just blown for the eighth time since arrival and now you have to wait for IV therapy as well. You are miserable, lonely, in pain and wanting nothing more than to escape. Hospitals are in no way a peaceful place of healing like they are illustrated to be on television — and doctors are not always the caring, compassionate individuals you see represented. The reality is a far cry from the impression popular media depicts.

The days not spent withering in a hospital bed are not consumed by enjoying your “loads of free time” due to your inability to work a traditional nine to five job as believed by the general population. Your body is much too tired, exhausted and in pain to leave your house most days. You spend the majority of time on your couch watching Netflix and taking intermittent naps while hooked up to your home IV hydration, supplemental oxygen or continuous tube feeds — with the occasional trip 10 feet down the hall to throw up in the bathroom (but let’s be honest, sometimes you don’t make it to the bathroom).

You cuddle with your cat and stay wrapped in your blanket shivering even though it’s 90 degrees outside because your body can’t regulate your vitals correctly. You spend the remaining hours of the day navigating the complicated backstage workings of the patient health care industry, functioning as our own personal secretary: making phone calls, writing emails, completing loads of paperwork, and sending faxes. Insurance companies, billing departments, research facilities, state disability programs, physicians, RNs and care coordinators are just a few of the people you deal with on a daily basis. Chronic illness is a full time job with no pay, no vacation and no weekends. Every day is a sick day — but you still have to work.

This notion of “free time” doesn’t actually exist for the chronically ill. When not exhausted on the couch you’re in a waiting room at one of your eight appointments a week, getting tubes and needles shoved places they don’t belong, or sitting in an infusion room chair getting your chemo, iron, or saline infusions.

The rare occasions when you do decide to leave your humble abode for a coveted “non-illness-related activity” — it is anything but sunshine and rainbows. First off, putting on real pants can be a serious challenge when most of your days are spent in cozy pajamas. Then there is the fact that you must pack like you’re going off to war even for the shortest of tips… because anything could happen at Target! You’ll need a backpack full of the chronic illness necessities: a mini pharmacy, extra formula, emergency supplies in case your feeding tube or Port gets yanked, an extra oxygen tank if you want to stay out for an extended period of time, warm clothes in case the temperature drops, a list of all your current medications and physicians information, etc. When you finally get to your destination your so exhausted from all the prep you just endured to simply leave the house that you decide to bag the day out anyhow. Maybe you will try again tomorrow. wpid-fb_img_1422824445006.jpg

Note from Judi : This post affected me in so many ways. I cried, I empathized, I got angry, I felt like the author was writing about me. Her perseverance under the weight of her illness made me want to try harder to stay positive and #AlwaysKeepFighting! Thank you Chanel! Hugs for comfort and strength!

OPEN LETTER TO SSDI

wpid-fb_img_1422635977059.jpgMy name is Judi Lieberman. You don’t know me. You’ll never meet me. To you, I am a file number. Among hundreds, thousands of others. Waiting. Me? 11 months. Waiting for someone, anyone, to see my file. Read about my situation. Read the doctor’s letters, treatment notes, medications and procedures tried and failed. My life is literally in your hands.

I wish you could have known me before all of this started. You probably would have liked me. Most people did. I was outgoing, friendly, smiling, empathetic, always willing to help anyone in need. That’s why I entered the medical/dental profession. To help those in pain and need. I worked full time steadily since high school. I worked my way up from receptionist, to assistant, to office manager, to practice manager (my last position). I loved the people contact; the challenge of having someone enter the office in pain and leave with hope and a smile. I loved what I did and expected to continue until I retired. Best laid plans as they say.

I began having fatigue and headaches around 2005. It wasn’t frequent or debilitating and I wrote it off to stress and daily life. As time progressed, things worsened. The fatigue and body pains more often kept me from doing the things I enjoyed. Lunches, movies, etc. I saw my GP, who referred me to a rheumatologist. I was diagnosed with fibromyalgia (now known as Systemic Exertion Intolerance Disease SEID) in 2007. I was prescribed Lyrica, which didn’t relieve symptoms and had severe side effects. Several other treatment options were tried and failed. I continued to work full time.

In early 2008, my headaches became worse and I once again sought out my GP. He referred me to an ENT since I had prior allergy and sinus issues. The ENT diagnosed migraines. I was referred to a headache specialist/neurologist. After trying several preventive medications that failed, we agreed on Botox. It had no effect on me and cost $3,000. We tried beta blockers, anti-depressants, anti-seizure, anti-Parkinsons, antihistamines, abortives, Topamax, triptans, and many, many more. They either didn’t give me any relief or the side effects were so severe that I had to discontinue the meds.

By this time, it was done with medicine completely. I needed relief and couldn’t find it. I continued to work full time. My friends, family, co-workers, and even patients, noticed the difference in me. I tried so hard to hide the pain and depression. But,  I smiled less, I looked down instead of meeting eye to eye, I covered my face and ears, backed out of plans, and generally retreated into myself. I wasn’t acting like myself. I decided to try natural cures. I tried chiropractic, acupuncture, yoga, Biofeedback, vitamins, minerals, supplements, etc. Some eased my mind a bit, but none took away enough pain.

My bosses noticed the changes in me. I admitted to the migraines and explained that they had progressed from episodic to chronic; almost daily. The Fibromyalgia brain fog and fatigue was making it hard to sleep, hard to concentrate, and caused me to make mistakes at work. I struggled through day to day, taking what meds I could. Finally in 2010, I couldn’t take it anymore. I was under tremendous stress as the practice was being sold and the current employees were being replaced. I was suddenly out of a job. After 6 years, and plans to retire from there. The depression hit me hard and the Fibromyalgia and migraines exploded from the stress of the unknown.

I had some savings and decided that while I looked for some type of work, I would go back to college. I started going in the evenings until my symptoms got worse at night. I switched to days until that became too difficult. I finished up my double AA in Certified Registered Medical Assisting (clinical and management) online.

By this time it was early 2011. I had been to Johns Hopkins University to see a specialist. I had seen an orthopedist, 3 rheumatologists (2 of which also diagnosed RA), 2 chiropractors (1 who practiced acupuncture and acupressure), a sports medicine specialist, and several physical therapists. I had been diagnosed with Lyme Disease, Lupus, Chronic Fatigue Syndrome, rheumatoid arthritis, Fibromyalgia, and intractable migraines. Some of these diagnoses were later retracted; as there are no definitive tests besides blood levels. The doctors agreed on RA, Fibro, and chronic daily migraines.

Along with all of these syndromes, chronic pain, body aches, vertigo, insomnia, etc., I fell into a severe depression and started experiencing panic attacks. I found a psychiatrist and psychologist to prescribe psych meds and provide counseling and support. The hardest part of dealing with my family, friends and the public are that all of my illnesses are invisible. There is doubt, derision, and stigma attached to diseases that aren’t visible to the naked eye. I’ve often wished I had cancer or something that shows up on an MRI or requires a wheelchair. How sick is that?!

Anyway, when I realized I couldn’t work a job due to the mornings I couldn’t get up out of bed, the insomnia, vertigo, vomiting, nausea, falling from weakness in legs, severe pain, numbness, aphasia, to where I couldn’t finish a thought or vocalize a rational sentence, I filed for Disability on my own. I was, of course, denied, as most (85%) of people are on their first application. I hired an attorney and we refiled. Denied again.

I was stuck! In constant pain, depressed, anxious, panic stricken, and lost! I had depleted my savings, sold my car, given up my apartment, moved in with my elderly mother, who is on a limited income herself. I had tried to fundraise. No one seemed interested. I needed a “me!” Someone whose joy in life is helping others rise above their misfortune. Someone empathetic, compassionate, can’t stand to see anyone in pain or alone. I was lost, hopeless, helpless, ashamed, tired, so tired, worthless, useless, unable to find a reason to keep fighting. Where was my “hero?!” My stranger who hugs me, lifts me spiritually, makes me feel like my life has purpose, tells me that I would be missed if I were to no longer exist?! No one showed up.

It’s now been 11 months since I last filed with SSDI for an appeal hearing in front of a judge. I no longer smile very often. I feel like I have PTSD. I jump at loud and, duck away from the light, keep my head down, avoid friends, family. I’m not who I was. I’m broken. I’m not living my life, I’m surviving. All of my hopes rest on someone I’ve never met, who has never met me. To them, I’m a file. This person will decide if I deserve benefits that would allow me to buy food, pay my daily living expenses, see my doctors, pay for prescriptions, get through my life the best that I can until I find proper treatment, medication, or cure.  I don’t know if this judge has ever had a chronic medical condition or know someone who has. If they will understand what it takes for me to get out of bed everyday instead of rolling over and giving up. If the judge has ever been so enveloped in darkness that they can’t even imagine ever seeing the light again. I hope for compassion. But unless the judge is or knows a chronic pain, sufferer/survivor/warrior; I’m not sure it can be understood or even believed how bad it gets.

I’ll never be the same person that I was, even if one day a cure is found for all that ails me. I’ll always have to fight the feelings of depression, anxiety, panic, fear, loneliness, worthlessness, and have to deal with doubters, deniers, and stigmas. Benefits will help me financially. Emotionally, it will take the rest of my life to rebuild.

At close to 4 years since this whole process began, my reasons to keep fighting are dimming. I’ll keep plodding along, not really living, just getting by. Please show me empathy and understanding. I am a real person, not a file. My name is Judi Lieberman.

Possible Relief?!

06/18/2015

by Judi Lieberman

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!