Once upon a time, there was a lovely, honest girl, with a charmed life that was about to go terribly off track. Here is her story.
In 2010 my world was turned upside down. I went to the doctor and heard the diagnosis that everyone fears: you have a genetic disease for which there is very little treatment available, and there is no cure. I just sat there dumbfounded. My diagnosis was Systemic and Discoid Lupus Erythematous, Hashimoto’s Thyroiditis and Fibromyalgia. Normally, I am very inquisitive by nature, but I was just at a loss for words. The doctor suggested some more detailed tests that would determine the severity of the disease and to better determine a course of treatment and handed me a stack of scripts that I needed to start taking immediately.
I left the doctor’s office in a bigger fog than I entered in and walked in the rain to my car. I sat in my car for a few minutes but before long starting thinking, “am I going to die?” I had just lost my mom to the big “C” and my dad was still reeling from that. How do I call him and give him the news that his daughter might be next? I decided to call my sisters, Mosie and Andi, to meet me at Andi’s house right away because I needed to speak with them. When Andi asked me what was so important I told her where I was and that I was just diagnosed with a disease called Lupus and before I could even get it all out, I started hysterical crying. Usually, I am a strong person and I have a wall that I put up for just such occasions that protect me from people seeing me hurt, but that wall disappears with my sisters. My sister said “come right here, I will get Mosie.” Mosie has worked in a hospital for 15 years and in my family, that means she is in charge of all things medical. After what felt like forever, the tears were done, I composed myself and drove to my sister’s about five minutes away.
By the time I arrived, Andi already had the coffee on, Google search powered up with the Lupus Foundation’s webpage opened and she had started reading off the horrifying stats for Lupus. It seems that 15% of women diagnosed with Lupus die within the first five years of diagnosis. So my sister in her typical fashion says, “Well you have already been sick for over two years so you just need to hold on for a little longer, your chances go up tremendously.” In my typical fashion I responded “Or I only have three years left.” With that, my dad walked in and said, “Hey, how did you make out at the doctors?” But by the look on our faces he knew it wasn’t good news. So I tell my story of woe again but without the tears this time so as not to further upset him. He looked at me and said, “Tee, you are young and up until recently have been healthy. You need to believe that we can get a handle on this and beat it. They come up with new cures and treatments every day and you need to be positive and fight. You are a tough woman and have never let anything hold you back. You need to decide you are not going to let Lupus win.” So I promised to do whatever the doctors told me to do and to look into clinical trials and whatever other limited tools were available to me. We searched the internet trying to find the best doctors in New York and expanded the search to find the best doctors in the world to see where the best treatments and most successful trials were being held. I took a few days off work to deal with my diagnosis and set up a plan of attack. I was going to beat this. If for no other reason but to spite all the negative information I was finding on the internet.
There ended the positive outlook for quite a while. You see, I wasn’t being completely honest with myself or anyone else about how bad I was really feeling. The thing is, Lupus did not just magically appear one day. In retrospect, I had been experiencing symptoms my whole life. I had leg braces as a baby, but never had a reason for needing them. I had tons of painful dental issues as far back as my baby teeth. The dentist said I took after my mom, implying that my dental issues were hereditary. I had terrible ear infections. The doctors attributed them to the fact that I was a swimmer and diver. In high school, I had constant infections which the doctors called, yeast infections, which would get so bad that the skin peeled off under my arms all the way down to my waist. Along with becoming a woman, I had constant horrible urinary tract, bladder and yeast infections. I had a sore on my face the doctor called a dribble stain that would appear, get better, go away and come back again. My weight and blood pressure would dramatically rise and fall. The doctors attributed this to puberty and white coat syndrome. During my freshman year, I was exhausted all the time and needed to nap when I got home every day for six months. Doctors attributed that to the stress of starting high school.
Then for years, I experienced no symptoms until I was in college. One morning I woke up and had excruciating pain in my left knee. Once again, my mom took me to the doctors and they could not give me a reason for the pain. This pain began to work its way through my leg until it got to the point where I could barely stand on it at times and the pain radiated from my hips to my toes. My mom brought me from doctor to doctor because none of them could identify a cause for the pain. Finally, after my nana insisted I go to her orthopedic, they discovered a slightly herniated disc. Knowing what I know now, that should not have accounted for the level of pain I was experiencing, but whatever the doctors said back then was considered gospel. There was no internet to double check their conclusions or to compare my symptoms with all other known diseases. For several years, I went to dozens of physical therapists, doctors, acupuncturists and chiropractors. Nothing they did relieved the pain. Then one day, it just disappeared.
I went on with my life. I graduated from high school and trade school for court reporting. I became a court reporter and hated it. At this point my back and legs started bothering me again but not nearly as bad as the previous episode. The doctors attributed it to carrying the heavy stenograph machine on the bus and through the streets of New York City. Again, I went through all of the treatment for a back injury with no decrease in symptoms. Fortunately, I was still covered under my dad’s insurance because as a freelance court reporter, I had no benefits. I really hated being a court reporter and not having benefits or paid vacations, sick leave, 401ks etc. only added to my dislike of career choice.
So, I started taking temp positions at different companies in search of the perfect career. I had a strong desire to be successful and in 1994 I set upon the journey of finding my second career. I took an indefinite temp position at one of the best brokerage houses on Wall Street, Donaldson, and Lufkin & Jenrette. The first time I stepped on to the trading floor, I was breathless. I was in love. Without a doubt I knew that this is what I wanted to do for the rest of my life. With a high school diploma and a certificate in court reporting I was determined to become a broker. I knew I needed to really want this and that I was going to have to work very hard at it. Let’s forget the fact that I didn’t go to a ‘real’ college, I was a woman trying to make it on Wall Street in the 1990s. Well, me and Melanie Griffith. Thank God my mom’s theme song was “Eye of the Tiger” and she played it constantly… lol. Watching working girl one to many times, working 12 to 15 hour days for three years and working a second job bartending just to make ends meet had finally paid off and in 1997, I was offered a position on the Mortgage Backed Securities desk for Garban LLC. I was over the moon excited. I felt like I was finally getting my dream job.
I was only there for a couple of weeks when a mystery symptom emerged out of nowhere. I was at my desk training when all of a sudden, I started having a terrible pain in my jaw. Since I was only there for a short time, I didn’t say anything, but before long a trader turned around and asked me what happened to my face. I said, “I don’t know but my jaw is killing me.” I went to the bathroom and was horrified when I looked in the mirror. My face was swelling up very quickly. At the time, I had a good friend who was a dentist and he agreed to take me in as soon as I could get to his office. It took me over an hour and by the time I got there, I was almost unrecognizable. He took a look in my mouth and told me that two of my back teeth were massively infected and that I needed surgery immediately. He got me in to see an oral surgeon who removed the teeth and placed a drain that removed the infection down my throat. By the time I got home I was so incoherent that I worried my sister and brother in law to the point that they came and got me and brought me home with them.
About a week later, I got a little better but the dentist was never able to explain what happened. In addition, I was tired all the time, I had unexplained pain, was nauseated and vomited all the time and lost a lot of weight. I couldn’t understand what was going on. I was working out and eating well, but I never felt good. I was getting weaker and even though I was extremely tired, I couldn’t sleep. I went to my primary doctor, but he couldn’t find anything wrong. I went to a nutritionist and a chiropractor, but nothing seemed to help. My family was getting very concerned so my aunt suggested a doctor who dealt with difficult diagnoses and immunological and infectious diseases. In one blood test, he had an answer for me. He said I had Epstein Barr Mononucleosis. He told me I basically needed to let it run its course and by that time, I was actually starting to feel better so I accepted his diagnosis. He gave me a list of lifestyle changes that would help it run its course a little quicker, but if I continued to eat well, exercise and add some vitamins to my routine I should feel better in a couple of months. His advice seemed to work and within a few months, I was back to myself again.
After that I was fine for years. I went on to pass my Series 7 and Series 63, went to school at night, still bartended on the weekends and became a Mortgage Backed Securities Broker. My career was right on track but my firm went through a merger and my desk decided to move to another firm, Tradition NA. Since that firm had not been in that market prior to my desk arriving, I received a promotion to MBS operations manager and MBS Broker. I was loving life. My career and social life were great, I felt great and I was optimistic for the future.
Then the unthinkable happened. It was a beautiful Tuesday morning that turned into a nightmare. We had moved out of the World Trade Center after the merger, but my office was right next door. I was running a few minutes behind that morning and I walked right into the middle of hell. The first plane had already hit and my boss, concerned for my wellbeing, suggested I walk up a block and come around. However, the information we had said it was just a Cessna that clipped the side of the building, so I continued walking towards the trade center thinking I could pass through the other building. As I got closer, I saw how bad it really was and decided to call my mom to let her know I was ok. With the roar of the fire and emergency services, I couldn’t hear on the phone so I ducked behind a median to make a quick call. As I completed dialing, I heard another roar and looked up. Another plane was heading right towards me. I was paralyzed by fear and knew there was no way for me to get away. When the plane hit, I was thrown and the back of my hair and sweater were burnt, but I was alive. I began to run for my life. I was lucky. I was able to get off the island and back to my home where my entire family was sitting around the phone. My little nephew said, “We were waiting for you Aunttee. We heard on the TV that you had a bad day at work. I was waiting for you to come home because I think you need a hug.” I held that little boy for hours that day so thankful that I was lucky enough to see my family again.
I thought that would be the worst thing that ever happened to me, but I was wrong. I left my job for fear that it would happen again. I began working as a medical transcriber at a local radiology practice and went back to college at night to finish my degree. I was sure I could never go back to working in Manhattan, but I missed the job I loved and knew I wasn’t done with my career. Three months after the terror attacks I awoke to tremendous pain and almost no mobility on the left side of my body. At first I thought I had a stroke but I had no neurological symptoms. I went to the emergency room and was told I had multiple herniated discs. The doctors attributed it to being thrown on September 11th, but in retrospect it was much more. Lupus was beginning to take hold.
Again, it got better, but this time, it did not fully go away. I went on with my life, finished school and went back to the financial world. I accepted a position at a firm in the same industry, but fortunately, it was not located in New York City. I was hired to develop a new department for MBS allocation and clearing, but because of the amount of time that had passed, I no longer had my Series 7 and Series 63 licenses, so I had to take the exams again before I could even think about being a trader or broker again. My health seemed fine at this point so I went back to school to prepare to take the exams again. I kept my job at Regional Radiology for a while to earn extra money because I had bought my first house right before 9/11 and with the decrease in my salary, I had to work a lot harder again, but eventually, I passed the exams and got my licenses back and went on to work with another team to create another new department at Pershing for Prime Broker operations. That was the beginning of the end for my career.
Little by little, I was getting more symptomatic. Then in 2007, I lost my mom and had surgery. I believe the stress from these two events brought Lupus from lingering in the background to a full time flair. My limbs and joints were constantly swelling, my hair was falling out in clumps, I had a rash and sores all over scarring my whole body, but especially my face.
For three years, I went to doctor after doctor. None of them were able to give me any real answers. They would give me diagnoses based on whatever symptom was most prominent at the time of my appointment. They told me I had adult onset acne. I was menopausal even though I was only in my mid-thirties. I had chest pain so I had high blood pressure. I had swelling in my joints, so I had bursitis. I had pain so I had degenerative disc disease. My favorite diagnosis was depression. When they told me that, I lost it in the doctor’s office. I was so upset that I screamed at the doctor. If I didn’t go into a complete depression after 9/11, I wasn’t depressed now. I knew my own body. I knew when something was wrong. I told the doctor if he didn’t figure out what was wrong with me, I knew I was going to die. I knew they were missing something. Once again, he sent me for more blood work. This time they checked me for everything. I had never had so much blood drawn at one time. Finally, I got a real diagnosis that explained all of my symptoms in one disease. I had Lupus, but my story was only beginning there.
I went to every specialist I could find. Some even took away the diagnosis only to give it back to me when it would flair again. It was horrible. I was exhausted all the time. I could barely eat. My hair and skin were a mess. I couldn’t walk. I couldn’t sleep. My body was in a constant state of battle. They tried all sorts of medicines that would make me even sicker. I was losing my memory. I couldn’t stay awake at my desk. I was missing days or leaving early for doctor’s appointments. My life was a mess.
I decided to take a short leave from work to get my health under control. I stayed out for as long as I could and went back. I really tried but I realized pretty quickly that I could no longer do my job. I was staying late every night just to finish the work that had once come so easy to me. The job I loved, I now hated.
In the beginning, my coworkers were very supportive, but after a while, they were tired of covering for me and began complaining to our managers, which I completely understood. Our job was difficult enough without adding someone elses’s workload to it. One morning they asked me to come into my Sr. VP’s office where they very nicely told me that they appreciated how hard I was working to keep my job, but in their opinion, I was not getting any better. The financial industry was in turmoil, and I was advised on my disability options. I was so upset. I felt like if I stopped working, it was the beginning of the end for me. In my head, as long as I was able to go to work, I was ok. But I wasn’t. Jeez, I even had Tupperware in my car to vomit in so I didn’t have to pull over to get sick every day. They told me that I was welcomed back as soon as I got my health under control, but because of the very nature and prognosis of Lupus, we all knew they were just being kind. I already knew my doctor would support the decision to apply for permanent disability because he had brought it up multiple times prior to my bosses telling me to do it.
Although I was losing my career, I wasn’t too worried about money because in addition to federal disability, I had a year of 100% paid leave saved up, and I had paid into a long term disability insurance my entire career that was supposed to pay me 70% of my salary until I turned 62 and provide medical benefits until I became eligible for Medicare.
I was lucky in the fact that my Social Security disability was approved on my first request. This is not typical. Most people have to appeal it several times before they get approved, but I won the first time. Another lesser known fact about Social Security Disability or SSDI is that you do not automatically get medical insurance or Medicare when you win your case. It takes 30 months from the date you applied before you are eligible to purchase Medicare. Which is another misunderstanding. Most people think that it is free but it is not. I pay 15% of my disability award to Medicare every month. Medicare also only covers 80% of medical care and only a percentage of the medicines.
Again, I was not too worried about my finances because I had a good amount saved in investments, and I owned a home, and I had the private long term disability insurance. I SHOULD HAVE BEEN WORRIED. A week after receiving the letter from SSDI letting me know that I had successfully proven to them that my Lupus had disabled me, I received a letter from my private insurance company, that stated they did not believe that Lupus had disabled me. I sent them tons of evidence to the contrary. I sent them test results, letters from every doctor and specialist (including the leading Lupus research team in the country at NYU), letters from coworkers, family and friends detailing the effects of Lupus on my ability to work and take care of myself.
Then an even bigger blow. I received a letter from the my employer stating that not only were they taking away my medical insurance, they were doing it retroactively for six months. So, now all the tests and procedures and treatments I received were not going to be paid by the insurance I thought I had. These bills were now my responsibility. I was blown away. How could they do this? How could this be legal? What was I going to do? I had a mortgage to pay and the housing bubble had just burst. I was taking about ten different medicines and seeing three plus doctors each month for treatment. Where was I going to get affordable health coverage when SSDI was only about 15% of my last year`s salary. And let us not forget, at this point, I was the sickest I had ever been in my life. I could barely get up and take a shower. Going back to work was just not an option at that point. I couldn’t take care of my house, do laundry, go shopping by myself, etc. Up to that point, I had paid people to do all that for me. I could no longer afford to do that. Luckily, I had friends and family who were very supportive, but how long could I expect them to help me? Lupus is lifelong. People have their own lives and families. You can’t expect them to take care of you forever. That is why we buy insurance. It is for the rainy days. Well it was pouring in my world and I was now stuck with no umbrella in a hurricane.
Now what? I have a disease that costs thousands of dollars a month to treat but not cure, a mortgage, the expense of living in New York, etc. I started looking for lawyers. Every employment lawyer I spoke to in Staten Island wanted a $30,000 + retainer to even take my case. The disability insurance is Federal and my former employer`s medical benefits are covered under state law and even though it is completely illegal for them to retroactively cancel my benefits, it seems there is nothing I can do about it. After months of sitting down with lawyers, I finally found a lawyer who was willing to take my case and take his fee out of my award. However, instead of the customary 33 1/3%, it was 40%, and he could only take the part that is federal. He advised me that it is a tough case because if we go in front of a jury, I don’t “look” sick enough. I wondered, what is sick supposed to look like? I have a disease that kills over 15% of its victims in the first five years and the ones that survive live in pain and exhaustion for the rest of their lives. I have plenty of medical tests and doctor’s testimonials, the federal government and their doctors agree with my doctor’s assessment, my employer told me I had to retire on disability, but yet there is almost no way to make the insurance company honor their end of the contract.
At this point, I had gone through all of my savings, borrowed against my 401K, put my house up for sale and I am behind on all my bills. Every doctor I went to wanted cash up front to treat me because I no longer had insurance and when I applied for assistance in my state, I was denied for everything but $15 a month in food stamps. Guess I can forget about the fancy diets my doctors want me to stick to. It is ramen noodles for me.
One light in all of this was that my chiropractor, Dr. Robert Valinoti, continued to treat me for free until I was able to secure insurance. My primary also tried to handle as much as he could without sending me to specialists. As long as my disease stayed along the same tract, I could see him and he would continue to write the prescriptions that my specialists normally would write. I was not able to monitor how these treatments were doing because I could not afford the diagnostic testing that is strongly recommended while taking these medicines. This became an issue when one of the medicines affected my eyesight. Had I been monitoring my blood, I probably wouldn’t be wearing glasses right now.
Then to top things off my identity got stolen from when I had to provide my SS number at my local hospital. The thieves took my Federal tax refund and hit my bank account twice before they were caught. When I went to the IRS for assistance, they decided I claimed too many medical bills and audited me. REALLY??? Didn’t they see I became disabled? Wouldn’t that explain the increase in claimed medical bills?
So what do I do now? Well, my lupus attacks my joints and bones the most, so weather is a huge factor in how I feel. As many see on the news living in New York in the winter is not for anyone with a rheumatologic disease. The cold and dampness in the winter and the humidity in the summer time is torture. So I decided to leave almost everyone I love and moved to Las Vegas, one of the warmest and driest climates in the country. My best friend, Christine, lives here so I knew I would have some support here.
Since living here, I have seen some great improvement with pain and mobility, however, doctors and support for people with lupus are severely lacking and I have issues with multi-tasking, recall and short term memory. Please understand too that when I say great improvement, that means, I am not completely confined to my home and bed all the time. There are still more bad days then good, but I keep pushing to feel better and get better.
There are two small groups here that help people with Lupus and through volunteering at the Colors of Lupus, I was able to meet others with Lupus and have made some wonderful friends. With the help of these friends, I decided to start the Charm Foundation. This foundation differs in that it is strictly for the patient. We want to just help people, not doctors, researchers or pharmaceutical companies. They have the Lupus Foundation fighting for more treatment research. We need advocates to fight for the rights of patients that have no one to insure that they receive the benefits and treatments they already paid for and provide the extras that they need because of the way the disease has impacted their quality of life.
I am still pretty sick most of the time, but I am tired of being a victim to a society that gives up on their disabled because they do not fit into what they think sick “looks” like. We formed a group of people with Lupus, to show people without Lupus or who love someone with Lupus, how to fight for us when we are too sick and tired to fight for ourselves. Lupus is one of the only diseases where I see the organizations expect the disabled to fight their own battles in addition to battling a disease that has no end. We need to find people to fight for those who cannot fight for themselves before it is too late. We have a whole generation of young people fighting to survive this deadly disease without having the tools to do it. It is estimated that over 15,000 people have Lupus in Las Vegas, 1.5 million in the United States and over 5 million worldwide. Ninety percent of these are women. We need to start making this invisible illness seen.