3:00 am. The world sleeps, perchance to dream. Dreams that bring content smiles. Or perhaps nightmares, causing tossing and turning. But at least dreaming. Recharging for the day ahead. Body restoring itself. Mind at rest. Healthy, rejuvenating rest. A chance to just breathe. In and out. Comfortable and safe. Secure in the knowledge that tomorrow will be a beautiful day. Waking up in a few hours. Refreshed. Looking forward to a new day, a new week, a new outlook. New ideas, new dreams, new plans, new hopes, new goals.
My 3:00 am. The loneliest hour of the day. Pain won’t let me sleep. My thoughts won’t let me sleep. Awake and alone in the dark. Tears. Guilt. Pain. Fear. No dreams, good or bad. No rest. No recharging. No restoring. More pain. Worries about tomorrow. Will I see it?! Do I want to?! No comfort, no safety. Panic. Anxiety. New day, more pain. New week, more fear and guilt. No new medicines. No new treatments. No job. No friends. No life. No money. No self-worth. My hopes, dreams, goals all on hold. No one to root for me, to cheer me on, to hold me, to tell me it’ll get better. I crave the darkness. I feel safe in the dark. No one to see what I’ve become. How far I’ve fallen. How long a trek back to who I was. Who I hope to be again someday. I fear the light of another day. And what it brings.
Another beautiful Saturday. Coffee and migraine. It’s a coin toss to decide how much caffeine to drink. Where’s the line where “just enough” becomes “too much” and migraine improves or explodes?! Preauthorization FINALLY went through after 3 weeks for my new meds so I’ll try to get out today to get them. Praying this one will help. Supposed to control depression, anxiety, insomnia, and pain. Fingers crossed. Scared I’m running out of medication options! So many promising new treatments and drugs on the horizon, but will I see them in my lifetime?! Where’s our funding for proper treatment and research?! So many conditions, illnesses, syndromes begging for money. Where do the invisible illnesses fit in?! We, as patients, have to prove how bad off we are. It’s hard without x-ray, CT scan, MRI, or definitive blood tests to show how sick and in agony we are every day of our lives. Without visible proof, we are mocked, ridiculed, and stigmatized, not only by our peers, but by employers, doctors, SSDI, and judges. If I were in a wheelchair, cast, or had surgery scars, the burden of proof wouldn’t be on me! Well, I’ve had a hellacious week. My therapy furbaby Samantha has a mast cell tumor again. $600.00 to have surgery. Mom developed shingles and is in a lot of pain. I’m trying to take care of them both while feeling like crap myself. Needless to say, my pain, stress, depression, anxiety and panic are through the roof! Great time to be between psychiatrists! Going to try and enjoy the long, holiday weekend regardless of everything. Would love to have plans to go somewhere. Maybe someday. Please see my fundraiser at http://www.youcaring.com/AlwaysKeepFighting and donate if possible! Every dollar is a blessing! I love y’all to the moon and back for your caring and support of me and my Sam! Enjoy your holiday! Enjoy your family and friends. Keep them close. With chronic illness, they tend to disappear. Trying to stay positive.
Those of you who follow me on Facebook or Twitter know of my obsession with the television show ‘Supernatural!’ My reasons are many. I started watching from the first episode in 2005. I had read about it and seen previews. I’ll admit, the two lead actors had something to do with my interest. Then, as I got several episodes into it, I felt a connection. If you’ve never seen the show, at it’s heart it is a story of two brothers. Sam and Dean. When Dean was four years old and Sam was six months old, their mother was killed in a house fire while the boy’s father, John, watched. The three of them made it out safely and from then on, the trio’s mission was to hunt down and kill the Supernatural “being” that killed Mary. John eventually sells his soul to a demon to save a dying Dean. The show then revolves around the brothers and their willingness to sacrifice, kill, and die for each other. Their eternal bond. Their resolve that “don’t think there is ever anything that I would put before you, ever!” Their “Family don’t end with blood!” is a common theme as friends, allies, fellow hunters, help the boys to survive. This story resonated with me. Maybe because I’ve never had, but always wanted, someone who cared so deeply for me. A soulmate if you will. Someone to understand my feelings, my hopes, my dreams, my failures, my setbacks, my wins, my world. Someone to empathize, encourage, and embrace me for just being me. No stigmas, no doubts, just complete and utter love and devotion forever. These brothers are not real, I fully understand that. But the actors who portray them are. And over the 10 years that Supernatural has been on, Jensen and Jared have forged as strong a friendship, brotherhood, “soulmate” status as Sam and Dean. From strangers meeting at an audition, to brothers for life who have admitted to being willing to jump in front of a bullet for the other. Both have admitted to bouts of depression during their lives, for varied reasons, at different times. They have, together, created a charity t-shirt campaign called AlwaysKeepFighting! This campaign opened lines of communication on subjects long stigmatized, kept hidden, and not spoken about. Mental health and suicide awareness. Both actors have lost friends to suicide and depression and felt the need to share and give back. This honesty with their fans made me love them even more and forge a common bond to share. Just this weekend, Jared had to cancel several Convention commitments in Europe to rush home and be with his family. He asked for support and understanding. He also asked for stories from fans about their struggles with depression and anxiety. Tweets, Facebook posts, letters, etc poured in for this beautiful, selfless, empathetic, compassionate, wonderful man! I wish nothing but happiness and inner peace for him and hope that being home with his loved ones is just what he needs to regroup, recover, and rest. Battling these invisible, horrible, frightening inner demons is the hardest thing I’ve ever gone through. It would be easier with a “soulmate”, best friend, sibling, but none of these are available to me. So it is my Twitter, Facebook, and #SPNFamily that I commiserate with, cry with, hope and dream with, share daily struggles with, and just be there to always keep fighting with! When the inner voices get too loud, I reach out and there is always someone available to drown the bad voice with positivity and love! I thank them all and love them dearly! #AlwaysKeepFighting #StayStrong #StopTheStigma
I was asked why there was a “stigma” attached to migraines. My answer was because it’s an invisible illness! If doctors can’t see it, they don’t believe it! Blood and bone are visible and easily treated! Doctors are visual. They heal, repair, and fix what’s broken in front of them. If they can’t see anything wrong, it’s that much harder. When there are no definitive tests, blood work, obvious answers, they’re stymied. This stigma is attached to all of these conditions, syndromes, illnesses including, but not limited to Fibro, CFS, chronic migraine, intractable headache, Lupus, etc. Too many to list. You must find an empathetic, compassionate doctor with knowledge of these conditions and a willingness to take on your particular case, fight for the patient’s rights and spend the extra time with the patient. The doctor must be willing and prepared to take on the insurance company, who will doubt the diagnosis, demand expensive tests that won’t show anything, and drag their feet with approval and payment of claims. The doctor must also be willing to deal with the hassle of the ludicrous amounts of paperwork involved. To say it’s hard to find such a doctor is a huge understatement. I’ve been very lucky. My pain management doctor is caring, empathetic, very well educated in my particular illness, and I’m thankful to have found him! “Stigma“ is also the shame and embarrassment that the patient feels while fighting to be believed. People in general tend to doubt what they can’t see. “It’s just a headache!” “Take a Tylenol!” “Why can’t you work?!” It’s embarrassing and completely discriminating to have to prove to others, including Social Security Disability Insurance, that what you have is real, chronic, horribly painful, and debilitating. And life-changing. I’ve lost many friends to my illness. What I presumed to be good, long-term, even “best” friends. They couldn’t handle me sick. Well, at least now I know who my true friends are. Be aware of how you treat everyone! Not all disabilities are visible! Our illnesses are real and so are our tears!
OED definition: (Of a person) having a physical or mental condition that limits their movements, senses, or activities.
Merriam-Webster definition: A condition (such as an illness or injury) that damages or limits a person’s physical or mental abilities. Limitation in the ability to pursue an occupation because of a physical or mental impairment.
ADA definition: A person who has a physical or mental impairment that substantially limits one or more major life activity.
SSDI definition: to meet our definition of disability, you must not be able to engage in any substantial gainful activity because of a medically-determinable physical or mental impairment that is expected to result in death, or that has lasted or is expected to last for a continuous period of at least 12 months.
I have a letter from my pain management doctor stating that his evaluation of my condition(s) shows inability to perform any gainful activity for the length of at least 12 months, most likely permanently. But the burden of proof ultimately rests on me and my “testimony” to just how “disabled” I am. People deciding my fate don’t see the pain, vomiting, vertigo, loss of vision, stumbling, staggering, tics, weakness of limbs, inability to make a fist, to hold objects without dropping them, to complete a conversation that is understood by the other party, my loss of words, use of inappropriate words, my side effects from my meds, etc. They don’t live with me and they don’t see my daily struggle just to take a shower or get dressed without agony or breaking down in tears.
I have sent the letter from my pain doctor, along with all of my medical records to SSI. These records include diagnoses of Chronic Daily Migraine, Intractable Headache, Fibromyalgia, Rheumatoid Arthritis, Depression, Generalized Anxiety Disorder, and Panic Disorder. These records are from my Psychiatrist, Psychologist, Pain Management Specialist, Rheumatologist, Neurologist, Headache Specialist, and GP.
Since first filing for Benefits in 2011, I have been denied, I appealed and was denied again, and finally hired a lawyer. I am in month number 9 of an approximate 12-18 month waiting period for an Appeal Hearing in front of a judge to determine if I am eligible for Benefits.
These almost 4 years of waiting have resulted in my losing my apartment and moving in with my Mother, selling my car, depleting my retirement account and all of my savings that I’d worked to earn for the last 30+ years. I’ve had no income at all since January 2012. I’m not eligible for Medicaid or any state or government assistance until my SSDI is approved. My medical insurance, which I couldn’t live without, is almost $500.00 per month. My deductible is $750.00 and my co-insurance is 30%. My prescriptions are tiered and range from $15.00 to $400.00 per month for each of usually 7 or 8 of them.
Why should I, or anyone in a similar situation, have to try to deal with this, in addition to already being too sick to work, or even get out of bed some days?! I worked hard and steadily for 30+ years to save for my retirement. It’s all gone! Why must I fight a system that I put money into my entire working life to get back what I’m owed in my time of need?! The added stress of this long, drawn-out fight may well put me in the hospital, as my medical and emotional well-being is severely compromised.
My conditions are all exacerbated by stress, and not knowing if I can pay for my insurance or for my next prescription, is not conducive to healing or stress relief.
I have always considered myself a strong, independent, self-sufficient woman, and now, having to rely on others and practically beg for every dollar I get is demeaning, embarrassing, and enough to make me consider ending the fight and myself. I’m not at that point yet, but seeing my future, my fate, resting in the hands of people who don’t know me, don’t have any reason to care about me, and don’t see my struggles on a daily basis scares the living hell out of me!
I’m not that strong, independent, self-sufficient woman anymore. I’m always in pain, I’m basically homebound, I rely on prescription drugs to make it through the day, I don’t have friends (they couldn’t handle the “new me!”) I go out when I must in dark glasses and a hat covering my face and nose to avoid light, noise, and smells that usually drive me back into my home in tears of pain, frustration, and defeat. I used to travel, visit museums, dream about my future…. Not anymore. I fear my future, and depending on the outcome of my hearing, may not have one.
I was a good person, always putting others before myself, helping those in need, compassionate, empathetic, and caring. I don’t know who I am now. It’s a life of darkness, fear, and pain, and I pray for a way out! I miss my life! I miss the me I used to be, and I hope I can find her again someday soon!
Today was a beautiful day! Sunny, breezy, not a cloud in the sky! I’ll bet it felt wonderful to be out there. I wouldn’t know. I was stuck in bed, unable to move without back spasms, jackhammers working in my head, nausea, vertigo, and severe leg pain. I was loaded up with painkillers and still couldn’t sleep. I tried to read, but couldn’t focus. I tried tv, but had no concentration. I wound up staring at the ceiling and crying, which did wonders for my head. Then I heard something. A jingle, like a bell. My furbaby Samantha jumped up on the bed. She put her paw on my arm and meowed softly. She proceeded to lay down next to me and started to purr. She kept one paw on me and fell asleep, still purring. I must have dozed off. When I awoke, it was 2 hours later, and my Sam was still laying next to me. She was awake, but I don’t think she left my side the entire time I slept. She looked at me with those huge green eyes and started to purr again. I realized I didn’t hurt so bad. My head felt better and I managed to sit up without pain. My babygirl had done her job again, without ever having had any training. She instinctively knows when I’m at my worst and need her nearby. She’s my angel, my therapist, my secret keeper, my confidante, my best friend, my pain relief, my comic relief (she always knows how to make me laugh!) She’s the heartbeat at my feet! I don’t know what I’d do without her! #PetTherapy #ChronicPain #ChronicLife