My 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.